Making Cancer Pay The "PRICE"

Update

2010-03-04T15:52:00.000-08:00

I will be hosting a RAW, drug-tested powerlifting meet at the Blackfoot Inn on July 31st. This is a National qualifier for the World Championships in Las Vegas, but all lifters of all abilities will be welcomed to the event. I don't care if you've been lifting for years, or if you have just begun to lift, if you share my desire to test yourself under a bar, you are welcome here.

This event is also dedicated to giving 100% of the proceeds to the Alberta Cancer Foundation. I refuse to take a single penny for my time organizing this event, and my personal goal is to raise $25,000.

If you would like to compete at this event, or if you wish to provide sponsorship or volunteer help, please email

rawpowerliftingcanada@hotmail.com

My long term goal is to give back all the money that the Alberta taxpayers spent on my treatments. By conservative estimation, I figure that I owe Alberta about $300,000, and I will not stop until every last penny is paid back. After that, the sky is the limit, and I intend to dedicate myself to raising as much money for the Alberta Cancer Foundation as I can.

Happy Lifting everyone.

Day +1851 The Last Post

2009-12-05T16:25:00.000-08:00

So Hello Again

I guess if we go by the chart, I’m on day +1851 post bone marrow transplant. That means 1851 days of joy, pain, tears, laughter, boredom, and practically every other emotion you can name. To be honest, I have no clue as to how to even begin describing what’s happened to me in the last 1594 days since I last wrote in this journal. I guess in the absence of any formal plan we should stick to chronological order. And I have to apologize in advance. I have a lot of people to thank so bear with me if this starts to sound like an Oscar acceptance speech.

When I last wrote here our family consisted of myself, my wife, my two kids, two cats and two dogs. There have been some additions and subtractions to the roster since then.
Sad news first. We lost one of our cats. Bruno was an adventurous soul who enjoyed long excursions away from home. Well, he took off for nine months a couple of years ago, and then in August of 2007 he decided to make the trip permanent. Caity and I recently decided to get two new cats and our furniture has begun to depreciate at an exponential rate. They have added that little bit of needed chaos Caity and I seem to crave since the whole transplant recovery thing.

The other news is nothing short of a miracle. In 2007 we increased our daughter count by 1. Apparently, after being declared 100% sterile, my body decided that it wanted to heal that part of my anatomy as well. Addison Megan Lyon Price was born in October and is one of the most beautiful creatures I think I have ever seen in my entire life. It’s amazing to go back and read how happy I was with just two kids. Now I can’t imagine my life without her.

I still work downtown in the Oil and Gas Industry, but I’m at a new company. After 4 great years of working at Storm it was time to make a change. It was one of the most difficult decisions I’ve made to date because the people at Storm are an amazing group of people, but after doing the same job for four years, a person requires a change of scenery in order to continue growing as a person. I want to publicly thank Brian Lavergne, Don McLean, and the whole group at Storm for supporting me and standing by my side during my darkest hours. I don’t think you’ll ever understand how hard it was for me to leave, but I hope you understand why I had to do it.

My current employer is Iteration Energy and once again I find myself working with some of the greatest people I’ve ever met. Brian and Carmen Illing have been absolutely amazing in supporting my powerlifting endeavours, and I am continuously blown away by how wonderful they are as people and as employers. The work has been hard, but I’ve learned so much more than I ever thought possible, in the last year and a half. I also get the pleasure of working with people I consider friends, more than I consider them co-workers. 6th floor? You guys ROCK!!!!! I don’t know what I’d do without you.

Getting back to family, my wife is the amazing woman she always was and has stepped up the fight against Cancer. She’s done the Light the Night Walk for the Leukemia and Lymphoma Society, twice, and is currently signed up for the Ride to Conquer Cancer (have you seen the link? It’s at the top of the Blog, Hint hint, wink wink nudge nudge). She continues to be my rock, my pillar of strength, my provider of sage advice and ass kickings. After everything we’ve been through I think I can honestly say that we are a 7.5 year old married couple with 40 years of experience and I wouldn’t trade a day of my time with her for anything. I love you Caitlin Marie Price, you are amazing.

About two years ago, Caity gave me another one of her famous kicks in the ass. I had started weight lifting again and she encouraged me to return to powerlifting. I had been making moderate progress in my basement but because I wasn’t getting out of the house, I was getting a little disgruntled with my lack of success. After several days of searching the Internet I found the single hardest working group of people I’ve ever met in my entire life. The guys and gals of the Independent Powerlifting Association are simply the best of the best in Canadian Powerlifting. If you want to truly learn how to train properly, there is no other place in Canada to do it.

Training with the right people makes all the difference because they push you in ways you couldn’t or wouldn’t push yourself. Since joining with them, I’ve competed in 4 National competitions and 2 World Championships. This November, I found myself at the top of the podium in France at the 2009 World Championships, getting a first place medal placed around my neck. Not bad for someone who 5 years ago was living at the Tom Baker Cancer Centre with tubes going into his chest!!!!

I continue to beat my previous totals with each competition and my goal is to attempt the 90kg bodyweight Bench Press World Record at the next Nationals if my training goes well. I can do it in the gym, it’s just a matter of finding the energy to do it in competition. Currently, my best numbers are as follows.

Competition Squat: 315kgs/693lbs
Competition Bench: 215kgs/473lbs
Competition Deadlift: 235kgs/517lbs

My lifts in the gym are much better than that, but that’s the trick to competing, trying to get all the best parts of your training to appear on one single day. I’m still waiting for that magical day to happen, but until then, I’m happy with the fact that I’m continuing to progress in my lifting.

So why do I choose to powerlift? I’m not sure what the answer is anymore. It hurts, it leaves me aching for days, my cardio is crap, and I don’t fit into any clothes or airplane seats comfortably. All I do know is that I love doing it. I love the feeling of the bar on my back, I love seeing stars in my eyes and hearing popping in my ears when I’m at the bottom of a lift. I love the way my face and neck get covered in tiny bruises from exertion after a really big squat. I think deep down, I love the fact that for a brief moment in time, it makes me feel like a superhero. In the heat of the moment, under a very heavy weight, there’s no time to worry about life or work or whether or not I’ll have enough cash set aside for retirement. It’s just you and the moment, nothing else exists. It’s peaceful, in a weird sort of way I think that’s the best way to describe it.

I want to personally thank Brian Johnston, Mario Piattelli, Corey Evans, Gary Bobrovitz, Lora Greco, Matt Arter, Michelle Senger, Andrea McDougall, Norm Lewis, Peter Jakobowski and everyone else for putting your time and energy into helping me get to where I am today. I’m really hoping I didn’t forget anyone because to train with this group of amazing athletes is an honour I do not take lightly.

Another facet of my powerlifting life is volunteering with the Special Olympics. If you get the chance, you need to do this yourself. It is one of the greatest experiences I’ve ever had. Thanks to Paul Manual, a member of the Calgary Police Service and Head Coach of the Calgary Special Olympics Powerlifting Team for encouraging me to take this experience as far as I can. In 2010, I am acting as Head Coach for Team Alberta for the Special Olympics National Games in London, Ontario.

If you were a reader of my blog back in the past, you’d know that I talked about volunteering with organizations focused on beating cancer. I did the Light the Night walk last year, and to be perfectly honest, I don’t think I could do that again. The entire time we were walking, my brain was bringing up emotions that I wasn’t ready to deal with. It left me very uncomfortable and that makes me very sad, because events like Light the Night are deserving of as much support as we can give. I hope that one day, I’ll be able to join my wife in the fight to end cancer, but I hope you understand that I’m still a little emotionally worn out from the last one. For now, my wife Caitlin fights for the both of us. She’s currently doing the Ride to Conquer Cancer (have I mentioned that yet?). If you felt so inclined, you could click here to send some money her way.

So, have I recovered fully from the last 5 years? I honestly don’t know. Physically, I still get sick a lot more than most people, and according to all the research Caity and I have read, the 5 year mark is where the chronic graft vs host starts creeping back into your life. Google “chronic graft vs host” and it’ll put a sour mood on your day, I guarantee it. I would say however that I came out of the entire thing mostly unscathed. My GI tract is still a little messed up and requires a daily shot of Metamucil to keep things normal, but other than that, my body is treating me fairly well. I’d have to say that the bone marrow I got was some top notch stuff from a decent human being. I had the great luck to finally meet him a couple of years ago, and yes he really is an amazing person. I’d thank him here, but he’s done so much for me that I wouldn’t know where to even start. I’ve met his whole family in fact, and they honestly treat me like one of their own. I can still remember the first time I met the whole clan. My bone marrow Donor’s father was cooking an amazing barbeque in my honor, and I thanked him for making me feel like part of the family. He looked at me for a minute with a puzzled look and simply stated

“You ARE part of the family”

In their minds, I have their blood inside me, so I’m part of the family, no questions asked. To this day, I can’t think back on that day without getting emotional. They’re an amazing close knit group of people with so much love in their hearts. Not only did I get a second shot at life, but my family tree grew a new branch or two overnight. And in case you were wondering about Addison’s two middle names, Lyon is a family name on Caity’s side of the family, and Megan is my donor’s mother’s name. When Addison was born, we asked my donor to provide us with one of Addison’s middle names. Without him, she would not exist so it seemed fitting and appropriate that he get to be a part of the naming process.

So that’s about it. I know a few of my friends were excited to hear that I was writing again, but this is a one shot deal. I came out of retirement to make sure that people coming to this blog knew I was still alive and kicking. For those of you who have been recently diagnosed with cancer, or are currently deep in the fight, I hope this helps to show you that the fight can be won. The important thing is to never give up permanently. You are allowed to give up for brief periods of time when you get knocked on your butt, but that’s when your friends and family kick you in the ass, and tell you to stand up again. And you WILL fall, make no mistake about that. You WILL have setbacks, you WILL have days where you really wonder if you want to go on. I can’t tell you why you need to keep getting up again (that’s for you to figure out), but you have to find something to fight for. For me, it was my wife and my kids. For you, it will be something else, but in your darkest hours, you need a singular thought to focus on when life gets too much.

And for those people on the sidelines watching friends and loved ones go through the process of fighting cancer, please know that frequent ass kickings are required when dealing with one of us. The human spirit can only be strong for so long, and when we aren’t strong we rely on you to get us through the really dark times. Never underestimate how important you are to your friend or loved one and never give up on us. I believe with all my heart that my wife pulled me through this, and I really have to wonder where I’d be today if she hadn’t been there for me. She was there for me when I was doubled over puking my guts out, she sat quietly beside me in the hospital when I was mostly unconscious and hallucinating from the medications and the pain. But most importantly, she was there when I couldn’t (or wouldn’t in some cases) go on any longer, she never gave up on me, and she never allowed me to quit.

And I can’t end this note without thanking, Elli Armstrong(my mom), and Jim & Sandi Price for putting their lives on hold to come live at our house for three months. When I went into the hospital, these three people came to live with Caity to help out with the twins, and to give Caity the time she needed to come see me every night. If we hadn’t had the three of them, I’m not sure how we would have made it through the first couple of months, and to this day I still feel like I owe each of them more than I’ll ever be able to repay.

After all is said and done, I know I’m supposed to end this blog with something witty and poetic. The problem is that cancer is neither witty or poetic. It’s one of the most terrible aspects of the human condition I’ve personally experienced and I don’t believe that I am equipped with the correct words to truly explain how I feel about it. I could end with the same words I ended my last blog entry on “Goodbye everybody, I'm Adam Price...Cancer survivor”, but that’s not right. Quite honestly, upon reading it again, I find it a little ego-centric. I guess the only real way to end this blog is with the only words that are left in my heart on the subject of Cancer.

Thank you Caitlin Marie Price, for saving my life. I will always love you.

Day +257 The End....For Now

2005-07-25T14:09:00.000-07:00

I've been getting a lot of subtle and not so subtle hints that I'm not writing enough on this website right now. People want to know what I'm doing, how I'm feeling, various opinions on life, but the truth of the matter is that I'm sick and tired of writing about my cancer. I'm a dry well, and I just want to forget that it ever happened and pretend like I've got a normal life again. I go back to work part time in September, and full time in October and with life the way it is right now, I simply don't have the time to write a daily journal. Besides, in my humble opinion there are far too many people out in cyberspace who feel the need to broadcast their deepest darkest secrets to the world. I'm really trying not to put myself up on a pedistal, but I feel that what I have been writing about was much more important than John Q Public's opinions on shopping malls and the latest celebrity gossip. I've said what I needed to say in order to help others out there like me, and now I'm going to get on with my life.

I now consider myself to be cancer free, and if that ever changes I'll be back at the keyboard telling it like it is. I've even got a digital camera now, so if I do end up in the hospital again, I'll be sure to take pictures of all the fun stuff.

Goodbye everybody, I'm Adam Price...Cancer survivor.

Day +242 A New Beginning?

2005-07-10T14:06:00.000-07:00

So, I need to explain about that last week before I get any more emails yelling at me that I'm already a day late. Let's start from the top.

I finally was strong enough to take the motorcycle training course that my family got me for my 30th birthday back in February. It was a lot of work, and I slept very well after each day of riding, but I ended up passing and am now fully licensed to operate a motorcycle in Canada. The next part is the actual purchase of the motorcycle, but I don't think that will happen for a while. You'll see why in a few paragraphs.

The next item on the list was the bank. As many of you know, Caity and I bought stock in my company last year, and July 1st was the end of the hold period for us to be able to sell the stock and turn a profit. Well, the bank managed to screw up practically every aspect of what should have been a simple set of transactions. The even lost my stock certificate for a month, which sent me into a dreadful panic. I guestimate that I've spent about 5 hours at the bank getting things sorted out, and another 5 hours on the phone trying to fix other mess ups. The good news is that we now have a nice little chunk of cash in our bank account that is about to disappear just as quickly as it entered our lives.

The sperm test was quite an experience. I went to the lab, and was given a specimen container and a room number. I entered my designated room to "produce a sample" and noticed that there was a TV set up, and several naughty magazines available to help produce the sample quicker. Now, I'm a normal guy. I was first exposed to pornography when I was about 10, and I've seen, read, and watched just about every naughty thing you can do with the human body in my travels as a testosterone filled under-sexed teenager. As a result, I require a certain "level" of visual stimulation in order to get the job done so to speak. I hit the power button on the TV hoping for the best, only to be filled with disappointment seconds later when the most famous bunny symbol in the world appeared on the screen. For those of you who don't know what I'm talking about, the Playboy symbol manages to accomplish two things at once in the heterosexual male brain. Number one, it tells the brain that it is about to see naked breasts. Number two, it tells the brain to expect not much else in the way of visual stimulation. Hugh Heffner may be known around the world for pornography, but his idea of pornography is so mind numbingly dull and boring, I'm amazed he's still in business. I know many husbands will laugh at this, but I actually got the job done by thinking about my wife. Yes gentlemen, my wife is that damn beautiful to me, and I still find her the most stunning creature in the world today.

Oh, and by the way. Despite the fact that sperm testing is the only reason for the existence of the lab that I went to, there is nothing more embarrassing than walking out into the waiting room to hand the technician a sample of your swimmers. There isn't a thing you can say to the nice lady as you give her some of your sperm that makes the experience less awkward.

Now to the big thing that happened this week. With the fresh injection of Canadian currency into our bank account, Caity and I decided that it was time to go house shopping. We figured that it would take us a couple of months at least to find what we wanted so we set up the first group of viewings for last Wednesday. Well, it just so happens that the first house we walked into was the house that we ended up making an offer on. Yes folks, we started looking for a house at 1:00pm and by 7:00pm we had an accepted offer of sale in our hands. We did go look at other houses after the first one, but nothing even compared to the first one. It was everything we have ever wanted in a house, and both of us can see ourselves growing old there. If the extra cash hadn't come along when it did, we probably would have needed to wait a few years before moving out of this one, but when you find yourself with the means to get the house of your dreams, you usually end up going for it. Besides, after this move, we never have to deal with another real estate agent, or house lawyer ever again. We also don't have to pack up all of our belongings and live like nomads ever again which makes me very happy. This time however moving might not be so bad as we're hiring movers to the job for us, rather than enlisting the Price family and the caravan of minivans that usually happens when one of us moves.

Finally, we move on to the car accident. Now, let me start this off by saying that Thursday was the six year anniversary of my last car accident, which means that as of Thursday my insurance rates go down. I'm sitting at a stop light on my way home from the latest bank fiasco, and there is a car in front of me. The light turns green, but the guy in front of me didn't go, so I was happily waiting for him to start moving when I was hit from behind. I guess the guy behind me figured that he didn't need to wait for the people in front of him before he proceeded through the intersection. No body was hurt, and the guy who hit me from behind was going 20kph at the most, but he still had enough force to throw me into the guy in front of me. Both of my bumpers were destroyed, but luckily there was no other damage to my car. My insurance company is saying that my insurance rates will not be affected by the accident, and the guy behind me is going to be paying for any costs that my insurance company won't cover, so other than a bit of inconvenience, I'm not affected at all.

It's a good thing that I'm not working right now, because dealing with life this last two weeks has been a full time job. I've found out though, that I'm a lot stronger than I used to be. I'm able to get through a full day of life right now like a normal person. The only problem I have is that I need a full day of rest between busy days in order to function. It's much better than I was a month ago, and I'm taking that as a positive sign. I'll most likely be better next month and the month after that, so all I need to do is keep moving forward and I'll be back to normal in no time. I had a talk with my replacement at work yesterday, and we both agreed that October 1st is an acceptable back to work date for me. We're going to use September as a warm up period where I come in for a few hours a day, every other day to get back in the saddle.

As far as working out goes, life has been so tiring as of late that I haven't been to the gym in about a week. I think I'll stick to my weights downstairs for a while though, because my body made it very clear to me that I'm not ready to go back to the gym full time. That being the case, it makes no sense to spend 90 dollars a month on a gym membership if you don't use it all the time.

If you want to live in a very pretty house that is only 10 months old, check out our MLS listing. Our number is C3178369. We want 239,000 for it, but if you mention our website we'll throw in two very lovable dogs for free. Oh, and we're selling our car as well, new bumpers and all. Everything in our lives is priced to sell people, so lets see some wallets opening.

New house, new minivan, bank troubles, car accident, dealing with lawyers and insurance companies. You think that Caity and I would be avoiding stress at all costs after what we've been through. I guess we've become so used to being completely engulfed in stress that we can't live without it. I wonder if there's a support group for stress junkies out there.

Yep there is!!!!

Day +240 Not Such A Typical Week

2005-07-08T14:05:00.000-07:00

So, I haven't written in a while and I'm sorry about that but I've had a busy week. Here's a quick summary of where I've been for the last 10 days.

I got my motorcycle license, I spent about 5 hours at the bank sorting out finances, got my sperm tested, bought a house, got in a car accident, and had to crash clean the house we live in now to prepare for showings next week. My hospital visit was the same as always, and I don't have to go back until September. So not too much for the average week. I'd love to elaborate on everything, but I'm wiped out. I'll fill you in tomorrow.

Day +230 Workout Aftermath Redux

2005-06-28T14:04:00.000-07:00

I'm able to walk again, but there's been a lot of cursing between Sunday afternoon and now. Every step was followed by a curse word and stairs were a near impossibility for most of Sunday afternoon. For those who have no idea what I'm talking about, I worked out my legs on Sunday for the first time in almost a year and a half. I'm actually so weak right now that they wouldn't let me squat on Sunday. I had to use the machines, and while I'm disappointed about not being able to squat, I'm glad I didn't. I ended up struggling with such a small weight that I was almost embarrassed to be there. And while I was struggling with my pathetic body, the big boys were doing 500+ pound deadlifts. However, every day I workout is one step closer to being back in the action, and while it's easy to be embarrassed about what I can lift, the true test of my character is that I keep going back. I haven't been to the gym since Sunday, but Okotoks is in a flood emergency, so I think I'll just force myself to work out in my basement until I can get my car to the gym again. Caity and I need to sell that thing in a month, and I bet the resale value would decrease a bit if it were 10 feet under water like the rest of Okotoks.

I've got my monthly hospital visit tomorrow, and on Thursday I have to make a pit stop at the fertility lab to see if I've got any swimmers left over from the chemotherapy. I'm actually hoping that I'm sterile, because that means I don't need to go in for a vasectomy. I've had so many medical procedures in the last year that I'm starting to consider them a normal part of life. I've never been to the fertility lab to make a "deposit" before, but it should make for an interesting afternoon. At the very least, it should provide some funny material for a journal entry so stay tuned for that one.

Sorry for the short, uninspired journal entries as of late, but how many times can I write that I'm tired and weak before I bore the crap out of everyone in cyberspace? But if you look at it from another perspective, if I've got nothing to write about, then that means that there's nothing new that's wrong with me. In this case, no news is most certainly good news

Day 227 Workout Aftermath

2005-06-25T14:03:00.000-07:00

I haven't hurt this bad for a long time. My body is not on the same page as me when it comes to working out, and it's fighting back with a vengeance. My chest hurts, my arms hurt, my neck hurts, my back hurts, and tomorrow when I go to do squats, I'm sure my legs will hurt. I've been working out for most of my adult life, and I was prepared for the fact that when you don't work out for a while, the first week back at the gym is usually uncomfortable, but this is full blown, just been in a car accident kind of pain.

It's also taking a lot more out of me then I can remember being normal. I guess my body just doesn't have the stamina it used to, and I find that I've got the energy for the workout, but then I lie around all day afterwards like a lump. There is supposed to be a neat little side effect of exercise that increases your energy, the more you work out. That's why the person you know that runs marathons always seems to have the energy to run a marathon at any given minute of the day. Well, I have the feeling that my body has forgotten how to do that. So, I'm in a ton of pain, I'm tired, and I'm going back for more. I seem to remember chemotherapy being easier than this.

That's it for today, it actually hurts to type if you can believe that. Wish me luck for tomorrow.

Day +225 A Much Needed Kick In The Ass

2005-06-23T14:00:00.000-07:00

I've been in a foul mood of sorts lately. With my sinus infection rearing it's ugly head again, I'm back on the heavy anti-biotics. The pain in my head hurts so bad sometimes it feels like my bottom teeth are going to fall out. I've also been under considerable stress as of late, due to various issues I've had with my bank. They MISPLACED my stock certificate for almost a month, and Caity and I are itching to buy the Honda Odyssey we've had our eye on, so I've been rather distressed that neither my bank or myself had any idea where my money went.

With those two issues now resolved I am feeling lighter today. My nose is still plugged up, but at least I'm not wanting to surgically remove my eye socket with a hammer anymore.

I wanted to talk today about kicking a cancer patient in the ass. I don't want to speak for other cancer survivors, but I've been sitting around doing nothing for a long time. I did this because it doesn't hurt to sit on the couch, it doesn't make me dizzy, and it doesn't make me realize my limitations. Well, Caity gave me a swift kick in the pants yesterday and told me that I WAS GOING BACK TO THE GYM. I've got weights in the basement, but the bench press bar currently has about 300 pounds on it. I can't even make it budge, and the effort of removing some of the weight actually makes me breathe heavily. I used to look forward to working out, now I'm just intimidated by the whole thing.

So I made the trip to Okotoks this morning to go back to Bruce Grieg, my former powerlifting trainer. All the people I used to train with were there, and I basically gave then the 2 minute summery of the last year of my life. I don't know why I was nervous about going back there, but I think I was feeling sorry for myself knowing that there's no way I can keep up to the big boys anymore. All I got when I walked through that door was support, and it made the super light workout feel like an accomplishment, rather than a shameful experience. I'm super tired right now, and my chest feels like it's going to fall off, but I'm going to try to make it to the gym tomorrow. That's all I'm going to worry about for the next little while. It's like when I was in the hospital in November. The nurses told me that the only two things I HAD to do daily were walk and shower. I can remember laughing at them before the transplant, but as time went on, I honestly wondered how on earth I was going to make it all the way across my room to take a shower. Well, now the hospital shower has changed into working out at the gym. Bruce and Wendy have a ton of experience with sports injuries, so they're starting me off the same way as if I was injured. They also provide a ton of motivation, and I find myself looking forward to getting under the squat rack, even if I only squat the 45 pound bar. Anything I do right now needs to be viewed as an accomplishment, and I think I was too pig headed to start working out before because I couldn't compete with my former self. It really makes me realize that I've been holding on to an image of my older self. That person was very strong, but the person I have become is much stronger, just in a different way. I've been mourning the person that I was, but in time, I hope that the physical strength will come back.

If you know or live with a cancer survivor, you might have to kick them in the ass, because after chemotherapy, a La-Z-Boy is more appealing then anything else in the world. After so many setbacks and problems, us cancer survivors just want to relax and forget about what we just went through. It's hard to know when to kick a cancer survivor in the ass, and I wish I could give you a better idea about when it's time to kick, but that's something you're just going to have to figure out for yourself. You might kick too early, but I doubt you could ever kick too late.

Thank you to my wife, for magically knowing the right time.

Day +220 Rubber Bracelets Everywhere

2005-06-18T13:58:00.000-07:00

A family friend just came back from South America and brought back the Spanish version of a LIVESTRONG bracelet for me. It's purple, and I haven't heard anything about a purple bracelet so I decided to do a Google search on rubber bracelets to see how many varieties of cancer bracelets are out there. I wish I hadn't, because I have now lost something that used to be a very powerful symbol for my recovery.

Now, I know there are other colours of bracelets out there. There's a pink one for Breast Cancer, there's a red and blue one for Teens Fighting Cancer, and I think there might be one for AIDS, but I was unprepared for what I found on THIS WEBSITE. Not only do they have about a hundred different colours and varieties of bracelet representing everything from "Remember 9-11" to support for the troops in Iraq, but they also have coloured bracelets with the words "QT PIE", "FLIRT" and my personal favorite "PIMP". This may not bother some of you out there, but I find myself greatly offended by the number of joke bracelets that are available out there right now. These bracelets are nothing but a pathetic attempt to capitalize on the growing popularity of bracelets like the LIVESTRONG bracelets. I know it may not mean a lot to some of you out there, but by wearing a "QT PIE" bracelet, you cheapen the meaning that my bracelet has to me. I'm sure you wouldn't consider wearing an AIDS pin that had the inscription "EZ RIDER" on it, so what makes you think that a cute slogan on a rubber bracelet is any more acceptable?

The people who market these joke bracelets care about only one thing. They care about how much money they can get into their grubby little hands before the next trend comes along. What they don't understand is that their actions have an effect on people who have rallied behind the symbol that their mass production happens to be destroying. I don't mean to take away from the meaning of the little ribbons that people wear on their shirts, but how many different colours of ribbon are there now? Do you even care what they mean anymore? A while ago, a ribbon meant support for AIDS, or breast Cancer, but what do you do when you see a mauve and teal striped ribbon? It could be something like supporting the end of poverty (also represented by a white rubber bracelet), or it could mean something as stupid as "I LOVE MY CAT" (a light blue rubber bracelet)

The same thing is happening with the LIVESTRONG bracelets. They're getting lost in the crowd because rather than coming up with a new symbol, someone simply took a good idea and made a cheap copy. Unfortunately, like all powerful symbols, the marketers went too far and made a bracelet for everything from "Zodiac Signs" to "I'd rather be fishing". What's the point of wearing a yellow bracelet if nobody has the faintest idea what it represents? Hopefully, the yellow bracelet will stand out amongst all the rest of the garbage that's out there, but it's lost a lot of meaning for me this day.

I can remember hugging the toilet bowl in the hospital as I dry heaved for 20 minutes from the side effects of chemotherapy. I can remember between heaves staring at my LIVESTRONG bracelet reading it over and over to give me the strength to last just one more minute. Thank you to everyone responsible for producing those other bracelets. I hope that you sell enough "QT PIE" bracelets to make up for the fact that you've destroyed a major source of my strength that kept me from giving up my fight in the hospital.

They say imitation is the sincerest form of flattery, but I'm having trouble believing that right now. This is probably one of those times where Caity would say I'm being a bit "Dramatic", but hey not to worry, there's a bracelet out there for that isn't there?

Yep, they've thought of everything.

Day +214 Teething...Again

2005-06-12T13:58:00.000-07:00

It's been a while since I felt bad for someone else. I'm used to looking around the room and seeing everyone else looking, sounding, and generally feeling better than I do. I beat the sinus infection I had, then proceeded to catch another cold. I just beat that one, and now my kidneys are killing me. People keep asking me when I am coming back to work, and the only thing I can say is that I still don't know. I catch EVERY cold I come in contact with, and I doubt I would be a very reliable employee.

"Sorry boss, I've got to call in sick again. I know it's the 18th day in a row, but I just keep getting sick"

Anyway, the past few days I've felt very sorry for someone else. That someone is my baby girl Kayla. She's cutting a top tooth right now and she doesn't understand why her head hurts all the time. She keeps crying and rubbing her head, and there's nothing I can do to explain to her that the pain will go away since she doesn't understand language yet. I was up with her until 6 am last night holding and rocking her as she sobbed quietly in her half-sleep. I'm starting to understand how Caity felt when I was in the hospital and there was nothing she could do to ease my pain. At least I knew what was going on, and I could express myself in other ways than just screaming.

I know it's irrational, but I feel like a horrible father. Aside from giving her baby Tylenol, and holding her until 6 am, there's nothing I can do to help her. And despite giving her Tylenol, she still cries herself to sleep. I know that Caity and I are doing everything we can to comfort her, but it just doesn't seem like enough. So let's see here, I'm weak, tired, sick, and I can't make my daughter's pain go away. I haven't contributed a thing to the gross domestic product of this country in over 7 months, and my insurance company is cursing themselves for not invoking the pre-existing condition clause in my contract. I feel completely and utterly useless right now. I'm most likely over tired, so take this entry with a grain of salt if you would.

I know that she is just cutting a tooth, and it's nothing to be worried about, but I have a new found respect for what my family and friends went through when I was sick. Feeling helpless sucks shit, and if I could, I'd take all of her pain away and put it on my already full plate of uncomfortable side effects, sickness, and symptoms. I'm tired right now, really tired, but I'm staying up because I know as soon as I go to bed, she'll start crying. It's happened twice in two days, so my fuzzy logic says that if I stay up, Caity will get some sleep. I'm the last person in the world who should be losing sleep right now, but I need to feel like I'm doing something right.

Anyway, before this entry gets more depressing, I'm going to end it (the journal entry that is). Night night everyone, and sweet dreams to my babies. PLEASE

Day +211 I'm not Weak, I'm Strength Challenged

2005-06-09T13:54:00.000-07:00

I missed something in my entry yesterday that I wanted to talk about. It's something that every living thing in the world has, and I think I just broke mine. What I'm talking about is the "fight or flight" response. You know, that feeling you get when you find yourself in a dangerous situation. You either turn and run, or stay and fight. Well, I've had to rename my "fight or flight" response to "fight or fight". I find myself almost looking for fights or confrontations, despite the fact that I'm weaker than shit. I don't know what the problem is, because I'm usually a mild mannered person. I'm no longer on the Prednisone so that's not the reason. It's also not directed at my kids or my wife, just random strangers. I found myself walking in downtown Canmore a couple of days ago, and I chose a specific portion of the sidewalk on purpose that made others move out of the way. I also was walking in the woods with the dogs a few days ago (one day after a bear killed a jogger in the same area) and I found myself looking for bears. I actually wanted to pick a fight with a bear!!!! How stupid am I?

Now, just so you realize how weak I am, I was wrestling with Caity last week and she easily overpowered me. Time after time, I would try to flip her over, but she would just casually grab my arms and pin me without too much effort. So for those of you who worried about what I might do to a complete stranger have no fear as I'm no threat to anybody. If I did pick a fight with someone, the newspaper headline would read something like this.

"Cancer Patient Picks Fight With Old Lady And Gets Ass Kicked"

I have a feeling that my weakness might be the problem. I used to be so strong, and I never had any fear, but I was also really calm then as well. Right now, I couldn't defend myself if I tried, and it's frustrating. I had a dream a couple of weeks ago where I was shopping in a mall and someone ran by and kidnapped one of my kids. I tried to chase him down, but I just couldn't keep up. I can't remember if I mentioned this in a previous journal entry, but when I went to my company's annual general meeting in downtown Calgary, I was afraid the entire time I was downtown. The two block walk to the C-train station (it's an aboveground subway system in Calgary) was terrifying, because I knew that if anyone wanted my wallet, they could easily have taken it, or worse. I pose no threat to anybody right now, and it's not that I want to be threatening, I just want to know that I could stand up for myself.

I don't think I look frail by any stretch of the imagination. I just don't have the energy to do anything harder than a walk right now. Caity says I've got the body of a swimmer right now, and she has commented on more than one occasion that I've got nice abs, but if you'll bear with me for a second, I'm going to use a bit of descriptive writing to paint a better picture about how I feel.

If I was a car before my transplant, I think I would have been a Hummer. Not the new ones mind you, I'm talking about the original super large version that took up one and a half lanes of traffic. I wasn't very speedy, but I was built like a brick house and I loved it. Now, I've got the body of an H3 (the really small new Hummer), but I've replaced the motor with a hamster in an exercise wheel. I can sit there and look ok, but I can barely move under my own power.

We're going back to Calgary today and I think I'll start lifting weights tomorrow. If you want a really good laugh, read my workout log over the next few days. It will probably say something like this

Day 1 - Went downstairs to the gym. Felt tired and had a nap. Went upstairs. No weight lifted today, but at least I made it all the way down the stairs.

This sucks.......

Day +210 Adam the Activist

2005-06-08T13:52:00.000-07:00

This last week has been a difficult one to say the least. The good news is that I'm over my cold, and the subsequent sinus infection I got as a result. The bad news is that I've become what I hate the most. An activist.

Now I'm all for supporting a cause, but it's the lunatics that make once proud organizations like PETA and Greenpeace the butt of the jokes on late night talk shows. People who go too far in their quest to support the organization they love. Now I haven't rammed an oil tanker with my 25 foot speed boat, and I haven't poured red paint on a fashion model wearing a fur coat, but I did the one thing that I hate, the one thing that makes me want to walk up and slap the person doing it, I got angry and vented my frustration on a customer service representative.

Now, you may or may not have noticed the weird things happening on the website lately. Well I tried to upload Caity's new journal on Saturday night, and Shaw was experiencing trouble at the same time. My first attempt timed out after only 10 seconds, same with the next one and the next one. The last error message I received was that I was not allowed to upload any more because I had reached my storage limit. That makes perfect sense of course because I have so many different kinds of graphics and fancy content on this site, I must have reached my 70 Meg limit (despite the fact that my entire web backup file is only about 2 MEG). Anyway, I followed Caity's advice and slept on it, and in the morning I tried again. I got the same storage limit problem and decided to call Shaw (long distance from Canmore) to talk to a tech guy about my problem. The first guy I talked to basically told me that it was all my fault and that I should really learn how to set up a web page properly. I finally talked to a second guy who looked at my file and proclaimed that I had screwed things up by uploading 7-8 main pages. To make a long story short, every time the server timed me out it left a partial copy of my webpage on my server. When I spoke to the third tech guy, he actually listened to my story of the frequent time outs and declared with some amazement that I did indeed have 7-8 main pages along with duplicate copies of most of my other files. With his help I erased the entire thing and uploaded everything from scratch again.

Everything looked fine at first, but then pictures would disappear, my journal could not be found and my main page went missing despite a fourth tech guy stating in that slightly arrogant tone that my main page was in fact there, and there was no way that I was having the problems I was talking about. Anyway, it finally looks like whatever was wrong with the Shaw server is fixed now, but I'm still left with the memory of my behavior towards the Shaw tech support. Now, some of them were a bit snotty and rude, but for the most part they tried to help. Many of you don't know this but I sent a good chunk of my university life working as a customer service person for a grocery store in Guelph. I've had people try to return an Easter Turkey in June after they forgot it in the trunk of their car for two months. I had an elderly gentleman throw a can of baked beans at my head because they were 30 cents more expensive then he REMEMBERED them being priced on the shelf (he was wrong by the way). I've had people swear, spit, and call me names and I actually had one person promise to wait for me outside the store so he could kick the crap out of me. Just for the record, I was always polite, and did my best to help the customer. I actually won two customer service awards for my efforts, so I wasn't the typical "no service" customer service person you frequently meet in life today. Usually the customer service person gets stuck with all the frustrations and anger that have built up in the customer before the customer even gets within bean can throwing distance of the service desk. It was after I got promoted from that position that I promised to be nice to all the customer service people I encountered. Despite all of my frustrations as a customer, I promised myself that I would never take it out on someone who was there to help me.

Well, I stepped over that line and I feel like crap about it. I became an activist over the weekend, and I couldn't figure out why the Shaw people couldn't understand why my website was so important. After only six hours of the problem with my webpage started, I wrote an angry email stating that I would go to the president of the company if the problem wasn't fixed ASAP. I think that I forgotten somewhere along the line that not too many people care about Leukemia. Let's be honest, there are a lot of worthwhile causes that I simply don't give a second thought to because it doesn't affect my life. I can't turn down a cancer related charity despite my best efforts, but I routinely shoot down door-to-door canvassers for the CNIB and the Multiple Sclerosis society because I just don't have any passion for their causes. I don't think that's a bad thing because I would most certainly be broke if I gave a 20 to every person who knocked on my door or phoned me during dinnertime. People choose to support charities that have affected them in a personal way, and I, unfortunately got stuck with a cancer that few people care about. Admit it, when was the last time you did a 5k run for Leukemia. And that's ok to me because more than likely you know more people with breast cancer and that's why they can successfully get such an amazing turnout when they hold a charity run.

I was an activist over the weekend. I was one of those annoying people who can't talk or think or do anything that doesn't involve their charity. I was one of those fired up angry university kids you see on the evening news getting pepper sprayed by the police for getting carried away. The truth is that I've never been passionate about fighting anything in my life more than I want to fight Leukemia. I'm blown away how emotional I can get when the subject of cancer comes up, and I think I need to learn to control myself a bit more or else no body will ever take me seriously. There needs to be more in my life than a fight against cancer, if I'm going to be of any use to anyone.

So just to set the record straight, I sent another email to SHAW, apologizing for my behavior and asking for their forgiveness. I didn't treat them nearly as bad as some people I know treat customer service people (you know who you are!!!!!) but I crossed the line that I had set for myself so that's all that matters to me. I hope that the person I talk to at Shaw regarding donating web space isn't a tech support guy, because I'm shit out of luck if that's the case. Caity and I have a new code word that will let Caity tell me when I'm being an asshole about my fight against cancer, and some of you would really laugh if you knew what it was. If you knew however, it wouldn't really be a code word now would it?

On a side note, in my attempts to get information about support groups from the Canadian Cancer society, I stumbled across a program called CancerConnections which links up survivors with newly diagnosed patients in the same area. If I am accepted, my name will be given to newly diagnosed Leukemia patients in order for them to get one on one help and support from someone who knows what their going through. I can't start until November since you have to be one year post treatment in order to volunteer, but the person I've contacted is willing to do all the prep work and training so that as soon as November 10th comes along, I'll be ready to help.

One last note about my wife's journal. It's a good read for anyone who's watched or is watching a loved one go through what I have, and it has a perspective into the fight against cancer that I simply cannot provide. She's watched it all go down, and most likely remembers more of it than I do. She's only going to write once and a while, but I'll always make note of any new entries on her part at the top of the main page. I'm glad she's writing, because it's amazing how differently we see the last 2 years of our lives. I honestly was not aware of most of her feelings because she was protecting me, but she's had just as tough of a fight as I've had (maybe more) and I'm even less sure I could have done what she's done. She doesn't like to be called strong, but I'm lacking a better word for how I would describe her.

Anyway, that's about it for me today. Off to play some Texas holdem' on PartyPoker.com. I only use fake money, but it's still a lot of fun. Besides, Caity won't let me watch it on TV. She can't understand why a grown man would want to watch other poorly dressed grown men play poker on TV. I can't say I understand it either, but there's got to be a reason why it's the most watched "sport" on TV these days. There's something very exciting about watching a guy push all of his chips into the pot when you're sitting on the other side of the table with pocket kings. If my success at poker keeps up, I might consider entering a tourney here or there. Just for fun of course.

Day +203 You Want Me To Sell Lottery Tickets? Really?

2005-06-01T13:47:00.000-07:00

Well, I'm feeling a bit down right now because the volunteer information session at the Tom Baker turned out to be a dud. don't get me wrong, I think that what they're doing is a wonderful thing, but my vision of volunteering did not include working in the gift shop, or selling lottery tickets. There were about 100 teenagers at the meeting and I think they'd get more benefit from volunteering in that capacity. I've also never been a great fundraiser so the thought of hosting a fund raising event does not appeal to me at all. There are many other people in this world who are exceptional at that sort of thing. My high school friends Pete and Brad are going to be chopping their lovely hair to raise money for cancer, and a little girl across the street from us in Canmore will be jumping rope for cancer research, but I guess I was hoping for a more intimate way to help other Leukemia and bone marrow transplant survivors, being one myself.

I keep thinking back to the time before I had my bone marrow transplant. Every part of me was tested to get a baseline of my bodily functions so that it would be easier to tell if any part of my body went wonky after the transplant. They even tested my mental state, and here was where I found the most dissatisfaction. I must state for the record that my shrink is fantastic. She is caring, and compassionate, and able to deal with a broad range of topics, but I don't think she is a cancer survivor. She never had a bone marrow transplant, I know that for sure. I remember asking her if there was a Leukemia and/or bone marrow transplant support network and she couldn't think of anything like that in Alberta. I remember walking out of that appointment feeling very alone, and helpless, and despite some of the wonderful emails I've received from many bone marrow transplant survivors, there still seemed to be something missing.

Now, those of you who know me well, know that when I get mad about something I generally say stupid, impulsive nonsense that I usually end up regretting. After the information session tonight, I phoned up Caity and basically stated that all I wanted was a Leukemia/Bone Marrow Transplant support group in Calgary, and if there wasn't one I might as well just go and start one myself. Usually, after I've finished my rant about this or that Caity will say something like "I love you" with a tone that when translated, generally means something like "You're an idiot, but you're my husband and despite the stupid, jackass thing you said, I still want you to sleep in the same bed as me". This time she said only one thing.

Well, then let's start a support group.

Now the drive back to Canmore took about an hour, and the further I drove, the better the idea sounded. So, I'm not sure how I'm going to accomplish this, but I'm going to start a support group in Calgary for Leukemia/Bone Marrow Transplant patients and survivors. I know that Caity and I can't do this on our own so we're going to need some major help. Here's what I believe we need to make this a success.

1. A decent website with a decent name. Members.shaw.ca/caityadam is fine for my own personal website, but this needs to be professional. I have no idea how to get a website name, or anything of the sort. Shaw has been nice enough to do all of that for me up to now. Another problem is that right now, I'm at the leading edge of my website design capabilities, so anything more sophisticated than this is way out of my league. My dream website would have a working forum, where people could publish their own questions, comments, concerns etc. The website would also link to various UP TO DATE medical resources so that a person about to go in for a bone marrow (or stem cell) transplant wouldn't be stuck fishing through 10 year old data like I had to. It would also include survivor journals like I've written here that tell it like it actually is. A person in my shoes does not want to read a generic pamphlet on what to expect when going in for a transplant, and despite their best intentions, I found the Canadian Cancer society's website to be completely lacking in soul and personality. I had to go fishing (once again) for survivor journals and all of them were based in the U.S. which didn't prepare me at all for the experience at the Tom Baker. Every hospital has a different way of doing things, and it would have been nice to know a bit more about how the Tom Baker handled people like me BEFORE I went in.

Another thing the website needs is a section (or sections) dedicated to the friends and family of bone marrow transplant patients. Life isn't all fun and games after you leave the hospital because you're extremely limited to where you can go. If a relative is sick with a cold, I can't go over to that person's house or see any of the people that live there. Anyone who has been around a sick person is also not allowed in our house which makes it very lonely at times. I was not prepared for the isolation I would have to endure both in and out of the hospital, and even 200 days post transplant it still gets in the way of me having a normal life. That's why the forums on the website would need to be very user friendly since it would be next to impossible to get 10-15 immonu-suppressed patients in the same room without causing severe panic. I still get nervous when I have to leave the house and I'm sure that it would stop me from going to any support group meeting that was held in the Calgary area.

2. The support of the Tom Baker medical and support staff. This is something that I'm going to have to do the legwork on. I need to get the help and support of the psycho-social department, as well as the backing of the doctors and nurses at the bone marrow transplant clinic if this thing is going to fly. A kick ass website is going to be no good if nobody knows about it. I'm already working on a mission statement to present to both departments, and I hope that I'll get the support that I need to get this up and running. My goal would be to have my website included in the list of resources they give to you a month before the transplant. You could read about the protocols and procedures used at the Tom Baker, then get on the internet and hear the patient's point of view about everything. I read about the procedures, and then went on the websites they provided me, but I still had the same questions unanswered, even after that. I even went so far as to call some of the help numbers they had provided in their "RED BOOK" but the help lines did nothing but ask for my address so they could send me more generic pamphlets.

I'm really trying not to disrespect the hard work of the people at the Tom Baker Cancer Centre, I just needed more than they were able to provide. They couldn't answer the questions that I needed answered. Even my consultation with the Bone Marrow Doctor a month before the procedure didn't help because, like I said before, she had never been through what I was about to go through. She didn't know that I was going to have to deal with five months of nausea, so the best thing she could say was "you might have some nausea, but we don't know how bad or how long it will last." I know they tried to prepare me for everything, but how safe would you feel if you were about to skydive for the first time, and your instructor had never skydived in his life? When I went skydiving a couple of years ago, my instructor had over 5000 recorded jumps, so I felt better knowing that even he had to have jumped for the first time at some point so he knew how I was feeling.

If I was to have everything I could ever want, I would want some of the Tom Baker staff contributing to the website. I can't imagine how valuable a Unit 57 nurse's thoughts and feelings would be to a future bone marrow recipient. That might be going a bit too far and it might break a few rules regarding professional distance between patients and medical staff, but this is just a wish list, so I can ask for anything I want at this stage of the game.

3. Someone willing to go the extra mile for new patients. That would be me. I'm so fired up about this project that I want to do everything I can to make sure that somebody in the future will have the tools that I didn't have to make the whole experience seem a little less overwhelming. I cannot stress enough how alone I felt when I tried to do research on what I was about to endure. You can't even find mortality statistics about Leukemia, because Stats Canada puts Leukemia in a potpourri category called "OTHER BLOOD CANCERS". There are only about 300 bone marrow transplants done at the Tom Baker each year, but that happens to be my area of expertise, so that's where I feel the need to donate my time and energy. If I had breast cancer, I'd be wearing a pink bracelet and putting my energy into that cancer. It's not my fault that I got a cancer with such a low incidence rate, but that doesn't mean that those 300 people a year don't deserve the same amount of help that a breast cancer survivor gets.

I'm in great need of help here, and I don't know how to make my dream a reality. I know I only have a small following of people that read this website on a regular basis, but if you or someone you know can help me get this thing moving I would be in your debt forever. In a couple of days, I'll post a copy of my mission statement on here for all to see. Armchair editors are more than welcome and I will take any advice you may have with an open mind, and an open heart.

On to other matters, my latest blood tests say that the incidence of the Philadelphia chromosome in my blood is 0.002% That basically means that it's completely gone as far as they can tell. I'm not sure, but somehow I knew in my heart that I had beaten Leukemia for the time being. I was throwing the remission word around this afternoon quite liberally to family members, but after some thought it really means nothing. I haven't been fighting Leukemia for a long time, I've been fighting the effects of an organ transplant. Truth be told, Leukemia never really bothered me like some cancers bother other people. It made me a bit tired, and I lost some weight, but I never missed a day of work because of it. All of the problems I'm encountering right now are transplant related, so I can't really say that I'm still fighting Leukemia can I? My head and chest cold are nothing to worry about. My doctor told me I was doing fine, and prescribed 10 days of anti-biotics to clear the whole mess up. I was really starting to worry about it, until Caity got the same cold. I know for a fact that Graft vs. Host is not contagious, so as soon as Caity got sick, I knew that I was out of harms way. It's still really uncomfortable though, so I'm hoping that the Sobey's pharmacy stocks the drug that I need so I don't have to wait another week before getting treated. I actually gained weight from my last appointment, and with no signs of nausea for the last three weeks, my appointments have now been spread out to once a month. Yeah!!!!! My vein in my right arm will finally get a chance to heal properly. I'm surprised I don't have track marks from all the blood testing they've been doing on me.

Well, I've got to spend some time with my lovely wife now, as she hasn't seen me all day. Night everyone.

Day +201 Anniversary? I missed it? Damn....

2005-05-30T13:46:00.000-07:00

Somewhere in the last few days (or the next few days) is my 200th day post transplant. Caity just read this and double checked my math and it looks like my 200th day post transplant was the 28th. So Yee-Haw for me I guess. I know that I feel a lot better than at day 100 post transplant, but I also know that I've got a long way to go before I'm back in fighting shape. Or any shape for that matter. I'm at a loss for words at the fact that it's been over half a year since I went in for the procedure. Time has really flown by, and although most of the trip was very unpleasant, I would have to say that it was worth it because I'm still alive to type this today.

So what wondrous insights do I have from my experiences that I can share with you as a 200 day veteran of a bone marrow transplant? Nothing except don't get cancer if you can avoid it. If you've been reading my journal and you haven't found the desire to eat better, or get more exercise, or do something to help your future self out, well then I'm not sure why you keep coming to my website. Believe me when I say that you DO NOT want to be celebrating a 200th day anniversary for any type of cancer related procedure. All that means is you've just spent the last 200 days of your life in a very uncomfortable state to put it mildly. You haven't been able to work, you aren't allowed to go to any public places, and you end up missing a lot of interesting things because you've been stuck at home watching daytime television.

Now, I've been known to fly off the handle in this journal from time to time, and there have been times when I've made a few people mad, but I'm trying really hard not to go into another one of my rants. Unfortunately, I know people out there who read my journal every day and do nothing for themselves to prevent something like this from happening to them. I realize that there are some habits out there that are almost impossible to break, and my heart goes out to them if they ever get sick. If science comes up with a reason for why people get Leukemia, and it turns out it's from eating chocolate, well then I'm going to feel really stupid for eating so much chocolate all those years ago. I guess what I'm trying to say is that I almost lost the chance to watch my kids grow up, and the only reason I'm here right now is because of a procedure that was invented only 20 years ago. If this was 1970, I would have lived for about half a year and that would have been it and Caity would be a single mother of two. I got very lucky in the fact that I got a type of cancer with a very high cure rate. There are some other forms of cancer out there that aren't as friendly, and I really feel sad for anyone out there unfortunate enough to get stuck with them.

If I could have one wish, it would be to give everyone in the world the power and strength to stop just one horrible habit before it's too late. It's not too late to throw out that pack of cigarettes, or stop pissing your money away buying fast food that has no nutritional value. It's never too late to get off your ass and get some excursive. It's never, ever to late to look at your friends and loved ones and realize that you want to be around to see them as long as possible.

I'm trying really hard not to sound preachy. My only goal here is to prevent someone from having to go through what I went through. Believe me when I say that no habit is worth going through chemotherapy. Trust me, I know what I'm talking about. If you don't believe me, then I can count ten people who have been through much worse and I'm sure they'd back me up on this point.

This entry hasn't been directed at any one person in particular, but if you think I'm talking about you, then maybe you should look in a mirror and set some new priorities in life. I do know several people I wish I could help, but all I can offer them is my love and support, and the knowledge that if they ever needed any help with anything I would be the first person to step up and offer any help I could. Like I said before, if it means that I help one person avoid a stay at the Tom Baker I'll do anything and everything I can. Don't believe me? My email is at the top of the page. Hold me to what I've just said, you won't be disappointed. Send an email to both addresses if you want, I'll answer any and every email I get.

On that note, I wanted to let everyone out there know that I'm going to start volunteering at the Tom Baker in the near future. It's one four hour shift a week, so I think I'll be able to handle it, but I hope that helps you see how committed I am to beating this stupid disease. There's an information session on June 1st that I'll be attending, and then it sounds like they interview each person individually to see where they would fit the best. I'm not sure where they'll place me, but with my experience as a bone marrow transplant recipient, I'm hoping that I can be put in a place where I can help the patients as well as their friends and family that have to go through the procedure.

I'll stop preaching now, and be on my way. I hope this entry hasn't fallen of deaf ears because you really have no idea how horrible life can feel like if you're not careful. They say that one in three people will get cancer, so let me be the cancer statistic instead of you and do something to fix your current lifestyle. Do it for your family, do it for your friends, and do it for yourself so that the next time I go to the Tom Baker Cancer Centre, I don't see you there.

Take care.

Day +200 Let Me Explain...No, There Is Too Much. Let Me Sum Up.

2005-05-29T13:43:00.000-07:00

Well, it seems like this website (and Pete Rainford) are reconnecting me to old friends, old mentors (the Youngs), and a whole bunch of new friends. Since you could spend hours looking through my journal before you found anything, I've decided to put up a brief summary of my life since April 27th 2003.

First time the word Cancer was used to describe me - April 27th 2003

First night in the hospital ever - April 27th 2003

Estimated blood tests since my diagnosis - 200 (I guess about 1.2 litres of blood in total)

Number of Bone marrow biopsies - 5

Total days in the hospital due to cancer - 40

Number of doctors I know because of my cancer - 7

Estimated cost to the Alberta taxpayer and my insurance company - close to $400,000 dollars (thanks by the way)

Number of holes drilled into my bone marrow donor's hips and thighs - close to 200

Number of times I've vomited due to cancer - I've lost count. I would guess close to 1000 times since November 2004

Number of times I brutally choked on dead pieces of my esophagus - 6

Pounds lost since Nov 2004 - 40

Number of medications I've been on since April 2003 - about 30, not all at once though (daily max was about 12 at a time)

Number of times I thought I would die - 0

Those are just some of the things that I can remember that have happened to me in the last 2 years. I consider myself lucky since I know people who are in much worse shape than I'm in right now.

Getting back to the present day, I'm still fighting my head cold, but I think I might be getting better. Last night I don't remember waking up from choking on my own mucus so I consider that to be a step in the right direction. Caity is being an absolute wonder by letting me sleep as long as I want to, so I owe her bigtime when I get better. I've been feeling a bit stronger as of late, and I think that's due to the fact that I'm eating normally again. I've decided to lay off milk for another couple of months since every time I have a glass I don't feel well. My doctors at the Tom Baker say that a lot of people get Lactose intolerant after what I've went through, but they say it's usually temporary. I love milk, but I love not puking even more, so we're drinking lemonade, and taking calcium supplements for a while longer.

Caity and I went for a long walk at the dog park yesterday. Normally I'm wiped out by the end of a walk, but lately I seem to be feeling better and better after walking. I'm avoiding going for a hike in the mountains for a while since flat ground is still a challenge for me, but I'm trying to take very small baby steps, and I'm also trying to be proud of what I've accomplished, rather than disappointed about what I can't do yet.

That's it for today, talk to you later.

Day +197 The Incredible Shrinking Adam

2005-05-26T13:41:00.000-07:00

We're still in Canmore house-sitting for Caity's parents, and I have picked up a brutal head cold that won't go away. With everything I've been through in the past six months, you'd think nothing would amaze me about my body, but the volume and colour of the snot that I blow out of my head on an hourly basis scares me. I wish I could describe the mucus to you in better detail, but basically it's the colour that makes you say "Oh crap, something is very wrong with me". It sounds like Caity is starting to get it as well, so hopefully I can shake this before Caity goes down for the count. It's hard enough taking care of the twins when we're both healthy (I use that word loosely for myself), but I'd hate to see what this place would be like if we both felt like I do now.

I'm starting to notice that I'm swimming in the old clothes that used to fit me so well. For last year's Stanley Cup Finals, I got a Calgary Flames shirt a size too small to show off my body, (I was 205 at the time and stronger than I've ever been in my life) and it's loose on me now. I've got to wear a belt with all of my pants and shorts, and I didn't really realize how much muscle I had lost until I started to notice myself in the mirror after a shower. I'm still a respectable 168, so I look like the average Joe, but there was something very empowering about always getting asked to move furniture or heavy boxes at work. I was the tough guy, the muscle man, and now I'm just another average Joe. Maybe I was overcompensating for being a skinny runt in highschool, but I enjoyed the fact that I had to buy special dress pants so that they'd fit my legs.

The twins are giving me a run for my money on a daily basis. Kayla's teeth finally broke through, and Ara doesn't seem to be fussing as much despite the absence of any teeth we can find. We're working on adding unsweetened applesauce to the diet, and so far they're both not dead or sick so it seems to be working. Other parents have told us to start with veggies so that they don't get used to the sweetness of fruit, but we tried strained peas a couple of days ago and they smelled so bad that I was disgusted. Healthy or not, I will not serve my kids something that I wouldn't eat myself.

Speaking of eating, I'm on par with what I should be eating now. I have been nausea free for two weeks now, and I've been working on incorporating snacks into my daily intake. Right now, I'm still eating whatever I want, and I seem to be holding my body weight for a change. I'm still holding off on any weights or hard cardio since I've made the mistake of trying too much too soon, but I figure that if I give my body a couple more weeks with a full tummy, I should be able to start back at some light weights and easy cardio. This is going to be very hard for my ego to swallow, but I'm going to set my dumbbells at five pounds and just go from there. Every week I'll add five pounds and that should put me back up to where I was before in oh......about two years. Sigh....

Well, since the kids are sleeping finally, it's time for my nap as well. I've started lying down every time the kids go down, and it seems to be helping with the energy levels. Oh, and despite the fact that I can't ride the motorcycle due to lack of insurance, I still have to start it every couple of days to charge the battery. Sitting on an running motorcycle, and not being able to ride it is possibly the most cruel and inhumane thing I can think of. It breaks my heart to know that I have to wait until Jim gets back before we can transfer ownership, AND INSURANCE to me. Damn you Jim, damn you for making me fall in love with that two wheeled monster.

Anyway, off to bed. Two naps in one day.....how sad.

Day +192 Teething

2005-05-21T13:40:00.000-07:00

It's been a rough couple of days. The twins decided to both start teething two days ago and they've been very difficult to deal with. I understand why they've been crying and screaming, but somehow at 5 in the morning yesterday that didn't seem to make it any easier. I spent three hours last night (from 2 to 5) rocking and cuddling a baby in pain, and I'm not sure who it was harder for. Kayla has now broken the surface on two bottom teeth and is feeling much better, while Ara is still working on two bottom teeth of her own. I hope they feel better soon, because I can't do much more of this without breaking down and crying.

On another sad note, my motorcycle riding is done. We found out today that Jim doesn't have it insured, so there's no more riding for me. I could deal with the driving without a licence fine, but the fine for driving without insurance is just too high for me to take the chance.

That's it for today, I don't have the energy to write much, plus there are other issues that I can't deal with in this medium that are really bothering me. I hope to get my shit together in the next little while, so hopefully there will be a better entry in the furure.

Goodnight, and vote for BO on Tuesday if you watch American Idol.

Day +189 Enema Juice goes WHERE?

2005-05-18T13:37:00.000-07:00

I wish I could describe the energy that I feel right now. We're in Canmore house sitting for a month, and Jim (my father-in-law) told me to start the motorcycle every couple of days to keep the battery charged. Well Jim, after a trip to Harvey Heights and back I'd say the motorcycle is fully charged. To be fair, you never said the motorcycle had to be stationary while it was running :-)

Anyway, I've got a feeling inside me right now that I haven't felt is a long, long time. The wind in my face, the feeling of speeding down the road on two wheels, I guess the whole experience gave MY batteries a recharge. It's most likely the adrenaline, but I really hope this feeling lasts a while, because I actually feel like my old self right now. I feel powerful, I feel strong, and I feel like I could conquer the world.

My hospital visit yesterday was long but interesting. The CMV virus that I was fighting was a NEW virus for me. That was why I got soooooo sick a while back. It turns out that both my donor and I were CMV negative, and somewhere back about a month ago, I managed to pick it up. My immune system has managed to fight it off, and I'll never have to worry about it again. I'm back to being tested for all the other viruses that could cause problems, and unfortunately they decided to have the bloodwork continue AFTER I had come back from my first round of bloodwork. So I got poked in the same vein twice in one day, and I had a bone density scan, and a chest X-ray. I really felt like a lab rat there for a while.

But here's the funny part about yesterday. There's a sore on my tongue that might or might not be Graft Vs. Host, so I got a mouthwash to swish with four times a day. Unfortunately, the mouthwash they gave me is usually used as an enema. That's right, I get to hold enema liquid in my mouth for four times a day until the sore goes away. I didn't want to ask what doctor thought of that idea, but they say it works great so who am I to argue. Besides, it has no taste, so I just have to get past the mental aspect of swishing with a colon cleanser.

Well, it seems that the energy rush is starting to wear off, but at least for a brief time I felt like my old self. If Jim doesn't mind, I think I'll recharge the batteries on that motorcycle everyday. Don't worry, I'm staying away from populated areas, highways, and downtown, and yes, I'm practicing all of my turns and emergency stops every day before I open the throttle and drop the hammer on that 250cc beast. I know he never said that the motorcycle was to be ridden, but he never said I couldn't so I'm choosing to read between the lines on this one. Besides, if we consider riding a motorcycle to be part of my cancer treatment, it's far less dangerous than most of the stuff I've been through in the last six months, right?

Thanks Jim, for making me feel alive again.

Day +182 Don't you come anywhere NEAR me with that Needle

2005-05-11T13:36:00.000-07:00

I think that's the last fast food I'll ever eat. Usually Wendy's is my comfort food, but after my latest doctors visit today I needed a mental boost. It was tasty, but it left me feeling very unsettled. A word to the wise...if you ever want to eat fast food again, don't watch the movie Super Size Me. I felt disgusted with myself after I had eaten, and proceeded to go to the grocery store and pick up everything that I could find that was organic and or natural. At least I'm on day 2 without any significant nausea so that's a plus.

I also got myself a new family doctor. Because I'm a new patient, he wanted to do the standard tests which included bloodwork, and I told him in no uncertain terms that there was no way in hell I was signing up for that. I've been poked by a needle 4 times in 7 days, so I told him that if he wanted my medical history he could call the Tom Baker and get it for himself. I tried to do it as politely as possible, but I swear to God, if anyone comes at me with a needle in the next week I'm going to break their arms. I know that I'm normally known for my good sense of humor, but I've had enough for a while. Currently I can count 6 healing needle marks on my arms, and I'm starting to worry if my veins will hold out for much longer. Today, it hurts to swallow a bit, and they must have used a lubricant to get the tube up my butt yesterday, because my bowel movements have got an exit velocity that is comparable to a surface-to-air missile.

My father-in-law was nice enough to scan my colon pics into his computer and he emailed them to me this morning. You can find them in the pictures section of the website. I also included pictures of my retinas that were taken back when I had my laser eye surgery in 2001. I'm going to start a collection of my body pictures since I've always been a biology nut. That really does explain why I work as an accountant doesn't it? Yeah, it doesn't make much sense to me either. I think that I'm interested in biology, but I'd never, ever want to work in the medical profession. Pictures of my colon are one thing, but pictures of other peoples colons have little to no interest to me. There are also new pictures of the babies standing, but don't worry, the graphic pics of my body are tucked away on a different page, so you don't have to worry about seeing my babies and my colon on the same screen.

Anyway, I'm babysitting tonight while Caity gets some much needed socializing time out with her friends so I'd better cut this short. Talk to you later.

Day +181 The GoLytely Experience

2005-05-10T13:34:00.000-07:00

Sorry for the lack of an update on Sunday with the GoLYTELY but it was really hard to get more than 10 feet away from the bathroom to get anything else done. Needless to say, I hope I never have to go through that again. As far as the scope went this afternoon, I wish I could report anything special from the procedure, but because I'm taking sleeping pills in order to get sleep, they jacked up my sedatives in order to make sure I'd be under. It's taking a while to wear off so I'm sorry if I botch the spelling or general coherence of this entry. I did get pictures that my father-in-law is scanning for me as we speak. They managed to find some colitis (inflammation of to large intestine) and I won't know the results for two weeks.

I have a need right now to get lots of stuff off my chest, but I just don't know where to start. I'm not even sure if there is anything specific wrong with me mentally, but it feels like my brain is really trying to struggle with an important issue. It's most likely a residual effect from the drugs I got this afternoon so instead of trying to bitch about something I'm unsure of, I'm just going to leave it for a day or so.

Tomorrow I've got bloodwork at the Tom Baker at 9:00am and then a visit to my family doctor to get a requisition for a semen analysis. I want to see if I've got the swimmers left. I know I wrote a journal entry a while ago where I regretted the possibility of not being able to have more kids, but I have come to the realization that I have two of the most beautiful kids in the world, and I like our current family where it is. Besides, with our track record, if we wanted another baby, we've got to be prepared for at least two more. Two sets of twins is a bit more than we're financially able to handle, so if I am producing sperm still, I've got a vasectomy in my very near future. God, I'm getting tired of people cutting into me.

Right now, I've got a sleeping pill in me and it is having no effect. I guess after a double dose of Valium and Morphine, a simple sleeping pill is the equivalent of taking medication from a Pez dispenser. Let's hope that I'm not up for too long tonight.

Day +178 The Right Attitude

2005-05-07T13:30:00.000-07:00

Ok, what the hell? I'm not on any anti-nausea medication right now and I don't feel like throwing up. Personally I think my body found out that a large hose is about to be inserted up my bum on Monday, and is trying desperately to talk me out of it. Guess what body, we're going through it whether you like it or not.

So right now I'm sitting here eating my lunch which consists of white cranberry cocktail, and vegetable broth. I can't have any solid food until Monday night, and I can't drink anything red or orange since that will hinder the detection of any bleeding in my G.I. tract. Tomorrow morning I get to start drinking my 4 litre jug of GoLYTELY (see main page for picture). I have to drink it at a rate of 8 ounces for every 10 minutes. For those of you wondering that's 133 consecutive shot glasses of laxatives consumed at about one shot per minute. And yes that means that there will be 4 litres of wonder fun coming out of me at about the same pace. Logistically, I doubt I'll be going to the Price family Mother's Day barbecue since I want to be as close to a toilet as possible.

So how far up (and down) will these hoses be going? Well, I've got some pain on my right side which means the scope has got to go all the way around and down to my appendix. The hose going down my throat will be traveling through my stomach and partway into my small intestine. The G.I. doctor flat out dismissed my request to have the cameras meet in the middle. I think she thought I was nuts for the request, but I sure made the reception staff laugh a lot. They said I had a great attitude and they wished more people were like me.

Here's the part that I have trouble with. While talking with the reception staff at the G.I. lab we got on the subject of cancer diagnosis. I guess while scoping people they sometimes find colon cancer. So the people who work there sometimes have the misfortune of informing a patient that they have cancer. Some people take it well, and some people just assume it's a death sentence. This goes out to those people who just assume they're going to die.

WHAT THE FUCK IS WRONG WITH YOU?

That kind of mentality is just mind boggling to me. I've been through a rough time, but I'm fighting, and if I do say so myself I'm winning. Even if I don't win this fight, I think I still fought it well, and if I die I want to go down kicking and screaming. I've had my low points where I questioned whether or not I could do it, but I will be fighting this thing right down to my last breath. With all the statistics showing that cancer is becoming more and more treatable, I don't understand why you wouldn't choose your glass to be half full. Anyway, getting back to my conversation with the receptionist, I guess she's been doing this for a long time and she confirmed that those people who think they're going to die usually get their wish. I guess the biggest lesson I've learned from this whole experience is that the mind is stronger than anyone really thinks. I've lost 50 pounds so far, and I can barely lift my kids up sometimes, but I would argue that I am stronger now than I ever have been in my entire life. When I get my physical strength back, everyone in the powerlifting world better stand back and watch me kick all sorts of ass. I used to question if I would ever get back under a squat bar, but I have no doubts about it now.

People to this day still accuse Lance Armstrong of using performance enhancing drugs to get where he is today. People, I've got to warn you about something. NEVER INSULT LANCE ARMSTRONG IN MY PRESENCE. He is my idol, my hero, and I will kick your fucking ass if you bad mouth him in front of me. He went through more hell than me, and that's why he's the tough bastard he is today. Survive cancer and you'd be amazed at what you are able to do. That's his edge, and now that's MY edge.

And if you thought Lance Armstrong was tough, you've seen nothing until you've met my wife. I DARE you to take her on because she's been fighting right alongside me ever since this started. It's hard enough to fight cancer, but I think it's harder to watch a loved one do it and I doubt I could do what she's done. I take a backseat to her when it comes to strength and I would really fear for someone's life if they ever crossed her. Other than Lance Armstrong, she is my idol. Everyday she has a family to raise and a husband to care for, and she does it with a smile. She is my rock, my base, and the reason I'm here to type this today. Oh, and if you thought I'd kick your ass for insulting Lance Armstrong, that's nothing compared to what I'd do to you if you insulted her.

Before a heavy lift, my training coach Bruce would put on an AC/DC tape and blast it at full volume. There's a whole lot of AC/DC on the radio right now so that's probably why this journal entry is a little more angry. AC/DC just gets my adrenaline surging and really gets the blood boiling. I'm going to call it a day, but I'll have a running dialogue describing my laxative experience up tomorrow. We're also going to try and get a camera into the scope room on Monday to get pictures of me getting scoped. Don't worry, we'll only take pictures of the mouth scope. I don't want my butt on the internet. Yet :-)

Day +175 CYTOMEGALOVIRUS!!!!!!!!

2005-05-04T13:26:00.000-07:00

I'm still sick right now, but at least I know a bit more than I did on Monday. I've got a virus called cytomegalovirus, and it can be quite problematic, but guess what? Chances are you've got the same virus that I do. I've been told that 80% of the population has this virus but most of the time it is kept in check by your immune system. Most of the time, it's as harmless as the virus that causes cold sores, but in immuno-compromised people like me it can be a bit of a problem. Here's a direct quote from a medical website I found.

What are the signs and symptoms of cytomegalovirus?

Active infection in otherwise healthy children and adults can cause prolonged high fever, chills, severe tiredness, a generally ill feeling, headache, and an enlarged spleen.

Most infected newborns have no symptoms at birth, but, in some cases, symptoms will appear over the next several years. These include mental and developmental problems and vision or hearing problems. In rare cases, a newborn can have a life-threatening infection at birth. Infants and children who get CMV infection after birth have few, if any, symptoms or complications. When symptoms do appear, they include lung problems, poor weight gain, swollen glands, rash, liver problems, and blood problems.

People with weakened immune systems can have more serious, potentially life-threatening illnesses, with fever, pneumonia, liver infection, and anemia. Illnesses can last for weeks or months and can be fatal. In persons with HIV infection, CMV can infect the retina of the eye (CMV retinitis) and cause blindness.

Sounds fun right? Yeah, I'm looking forward to this. On the bright side my scope (both up and down) is scheduled for Monday to check out the pipes. It sounds like I've got to spend my weekend "cleansing" and I can only assume that means enemas, enemas, and more enemas. At least I don't have to collect any more fecal matter. Two jars of it are currently sitting in my fridge and if you will permit me, I'd like to describe what I went through to collect them this morning.

Have you ever pooped into a large plastic container? I had to for a while in the hospital so they could measure the volume that was coming out of me. The container in question is like a half moon that fits onto your standard toilet bowl so you can sit down and collect specimens in relative comfort. My first issue with this type of receptacle is that the container is less than 4 inches deep. WHEN WAS THE LAST TIME YOU HAD A POOP THAT MEASURED LESS THAN FOUR INCHES!!!!! There is nothing more annoying than having to stand up to finish your bowel movement so that it doesn't smear all over your backside. My second issue with the collection container, is that is DOES NOT FIT MY TOILET. Within 10 seconds, the container slipped and fell into the toilet. So, I had to haul a dripping plastic container filled with my own feces out of my toilet to transfer my "deposit" into two smaller specimen containers.

Here's where I learned to appreciate the fact that we normally poop into water. Water does not allow smells to escape very well, and since there was no water in the container, the smells were allowed to permeate the upstairs bathroom with an astonishing speed. Since I'm still fighting nausea I don't deal with smells like that well, so I headed downstairs for a breather, and to retrieve my Popsicle stick and jar to extract the samples. I must point out at this time that some of the drugs that I'm on are incredibly effective at increasing the potency of fecal smells so by the time I got back upstairs to collect my samples, the entire upstairs of my house had become inhabitable due to the odor. 20 minutes later, with nose plugs firmly attached, and all the windows in the house open and both bathroom fans at full power I tackled the task of filling my specimen containers. One of my cats came bouncing upstairs to see what I was up to, took one sniff and ran away. I haven't seen that cat in over 8 hours. I can't blame him though.

So, several hundred dry heaves later, I came downstairs with samples in hand. I really feel sorry for the poor bugger who gets to test those samples. What a shitty job that guy must have.

Anyway, enough about my poop, let's move on to my day. I spent the entire day watching TV and downloading game demos off of the internet. For those of you who are into video games, DOOM 3 is possibly one of the most graphically impressive games I've ever seen. It also has some of the most pathetic game play I've ever played. You're in almost complete darkness most of the time, and while you ARE given a flashlight to see where you are going, you have to put the flashlight away to pick up your gun. So with gun in hand, you get to stare at a pitch black screen while monsters surround you and beat the crap out of you. I loved Doom and Doom 2, but the game designers really dropped the ball when they created this piece of garbage.

I've also been spending my day trying to get back into the habit of consuming food. I seem to be able to drink water and skim milk, but anything heavier than that and I start having difficulty getting it down. Right now I'm slowly working on some pasta, and it seems to be going down alright, but it's most definitely a fight to keep solids down. As of today, I have officially dropped below 170 pounds, however I am losing weight slower than I was 2 weeks ago so I guess that's progress. There's got to be something really wrong with my body, if Zofran (21 dollars PER PILL) doesn't get rid of my nausea. My guess is that I've got an infection, or some kind of sore in my intestines that is getting irritated and causing the cramps and general discomfort. I hope they find something when they go exploring because I'm in great need of some answers.

Well, The Hunt for Red October is on, and it's one of my favorite movies (even if it is edited for television), so I'm going to go. Stay tuned, as I'm going to see if I can get some video from the scope to put on the internet. Admit it, you want to know what my bowels look like!!!!!

Later

Day +173 Home Alone

2005-05-02T13:23:00.000-07:00

I'm in a cold, empty house right now. I'll get back to why it's cold and empty in a second, but let's start from the top.

I've been having a rough go of it lately. The nausea isn't going away, and last night I had one of the largest (volume-wise) bouts of vomiting I can recall in a long while. Caity had the unfortunate timing of needing to go to the washroom just as I was needing to puke so I chose the next best thing, the kitchen sink. There is nothing worse than picking out the big chunks from the drain of a kitchen sink, so I advise that if you need to puke, choose another receptacle to deposit your vomit.

Anyway, Caity and I decided that enough was enough and went to the hospital today. They ran the standard blood work, and this time I stood my ground and basically said to the Doctor that I was not well, and I wanted something done about it. So now I've got to collect my poop, and send it to the lab. I've also got an appointment with a G.I. scope (camera up the bum) as well as possibly a camera down the throat. I really hope they wash it first. If they do the two cameras at once, I'll see if I can get them to take a picture of the one camera with the other camera in my small intestine. It will be like the ceiling of the Sistine Chapel only inside my G.I. and with camera snakes instead of fingers.

So now, I'm on the same anti-nausea medication that they give patients DURING CHEMOTHERAPY, and it seems to be working slightly. I'm also down below my lowest hospital weight. I've been trying to eat for the past four days, but for all my hard work, I just keep slipping away. Our scale (which Caity bought last Wednesday) tells me that I'm skinnier than what I used to weigh in high school. I've gone from being a 220 pound man who can squat 600 pounds to a 175 pound man who breathes heavy at the top of my house's single flight of stairs. On the upside, the doctors at the Tom Baker don't think it's graft vs. Host. They don't understand why this nausea is still lingering but at least the testing process has started. It's probably a silly little problem with my intestines that can be fixed up in no time, but I'm finding it difficult to be patient while they figure out what's wrong. I know that a couple of weeks doesn't sound too bad, but I've had nausea or fatigue, or diarrhea or all three at once for the past six months straight. I know that I joked in an earlier journal entry that the transplant process would be like a bad flu for six months. Well, I'm almost at the six month mark, and I feel worse that when I left the hospital. I now understand that this is not a joke. There is nothing funny about what I'm going through, and I'm running out of ways to find this life acceptable. I was actually hoping to be back to my old self by July 1st. Now, I'm just hoping that I can have a couple of days off from the hell that I currently live in. That brings me to the cold empty house.

Caity packed up the kids and the dogs and took them to Canmore. She said that I needed a vacation from all the stress of life, and even though it broke my heart, I have to agree that I could probably use the rest. I wish there was a happy medium that would allow me to spend time with my kids and then go away when I need to, but with twins, everyone is on the go, all the time. I am also not very good at sitting down and watching others take care of my kids.

So, I'm sitting at home, just me and the cats. The house is surprisingly low on baby furniture, since we stuffed everything into the Ford Focus just in case Caity is out there for longer than a few days. It's amazing how much we can stuff into a station wagon. Right now, Caity is in the car with two carseats, 3 bags of clothes, two baby swings, an Exersaucer, a Jumperoo, two 60 pound dogs, two high chairs, two baby backpack carriers, a double breast-feeding pillow, a full-size playpen and numerous small bags filled with baby feeding supplies. I used to laugh at my sister-in-law for hauling around so much baby crap, but I now understand why she did it. Every piece of baby equipment gives you one more option to entertain a fickle 7 month old. You can only play peek-a-boo for so long before you need a break, and if a large plastic saucer will distract the kid for half an hour, you do whatever it takes to get that half an hour. If it means that you don't have room to bring a change of clothes for yourself, then that's what you do.

Anyway, I'm going for a nap. I don't have to worry about any feedings, crying, or any other distractions so I can sleep as long as I want. On the other hand, no one will be there to smile at me when I wake up, so I'm not sure if I got the better part of this deal. I already miss my babies and my wife terribly, but I've got to take this time and get some rest so that Caity's efforts will not have been in vain. If you're reading this in Canmore Caity, I want you to know that I love you with all of my heart, and I wish there was a way that I could thank you for giving me the break that I need. I miss you so much, and I wish there was another way to do this.

When you get home, I want some SERIOUS baby-daddy time.

I love you so much.

Adam

Day +168 Pools are worse than Westjet

2005-04-27T13:21:00.000-07:00

So, this is the two year anniversary of my cancer diagnosis, and it passed by without too much fanfare. I suggested going out to celebrate, but Caity was hesitant about celebrating one of the worst days of our lives. Go figure.

My doctor's visit today yielded no new positive results. Right now, my energy levels are at an all time low, and according to the hospital records, I've been losing about 2/3 of a kilogram every week for the past two months. I was told by the dietician that it was anything goes right now as far as diet is concerned. I've never heard a dietician ever say it was alright (and highly recommended) to mix ice cream in with my weight gain shakes that I now have to drink. She said as plain as day that it didn't matter what I ate, just as long as I got enough calories right now. It's frustrating mostly because on paper my blood tests indicate that I'm in perfect health. Right now, there's nothing left to do except treat me for anything that pops up that might be harmful to my health. Other than that, I've got to just except that I'm going to have low grade nausea, and no energy until my body decides it doesn't want to be tired and pukey. When will it stop? Anywhere from one day to the rest of my life. Well, at least they've given me a range to work with.

I have one bit of advice for anyone out there in my situation. Don't set deadlines for yourself. All you're going to do is set yourself up for failure. I was supposed to be back at the gym by April 1st. I was supposed to be done my internet course by the end of April. Currently, I haven't worked out in almost a month, and I have barely broken the spine on my textbook. Right now, just getting up before noon, and going for a walk in the dog park are two parts of a very successful day. That's about all I've got right now.

I also found out that I'm allowed to go on a plane right now, but I've got to wait a full year before I'm allowed in a public pool. We all know that planes are germ factories, but just how bad are the conditions in a public pool that they pale in comparison to a crowded Westjet flight? That means no aqua-tots class for me. I'm going to miss watching the kids play in the water, but the thought of spending for than 10 seconds in the kiddie pool really grosses me out. Did you know that waterproof diapers do nothing but keep the poop out of the water. That's a lot of kiddie pee in the kiddie pool.

That's all I've got in me tonight. I'm really wiped out, and I need some sleep. Goodnight.

Day +162

2005-04-21T13:20:00.000-07:00

I think I've started to write this journal entry about a dozen times, and every time I end up erasing it. I keep tripping over old ghosts from my past. So I'll just say this past week has been a great week, and a lousy one as well.

The source of the joy has been the visit from my biological father. He came up to Calgary, and got to meet the Price family, and the twins. He and I have only met two times before, but it sounds like there will be many more meetings in the future, and I really look forward to that.

The lousy part of the week comes from the low energy I've been experiencing. I'm exhausted, and I have really dry skin all over me. My favorite pastime right now is scratching my body raw in places and pulling the dead skin bits off of my lips. I did manage to go for a small walk in the woods today. I even tested out the double baby harness that Caity and I bought. My back feels like murder from having two 14 pound babies strapped to my chest for half an hour, but all in all I think I did all right all things considered.

Well, I'm on baby duty until Caity gets back from skiing, so I'd better make this quick. I'm going to wait until my doctor's appointment on Wednesday to write again. Hopefully this skin issue isn't graft vs. host coming back, but we'll know more on Wednesday.

Day +155 The Amish

2005-04-14T13:18:00.000-07:00

I had my last weekly trip to the hospital yesterday. From now on, I only need to go every 2 weeks, and soon it will be only once a month. I have no idea what I'm going to do with the extra time that is now on my hands. I'm so used to waking up on Wednesday and just expecting most of my day to be spent waiting at the hospital.

Oh, and for you other bone marrow transplant patients out there....at five and a half months post transplant, it is STILL not safe to eat spicy Jamaican patties unless you are willing to pay the price out the back door the very next day.

Actually, I'm not too concerned about the liquid fire coming out of my posterior since I've had MUCH worse in my lifetime. Let me take you back to my university years to tell you a story about the "FIRE STICKS"

It was in the formative years of my relationship with Caity that we discovered the fire sticks. We went to the St Jacob's Farmers Market one day for a look around and we came across an Amish deli of sorts. Homemade links of sausages hung from the windows and every sort and variety of smoked, cured meat product was available. Now, I've always loved a hot pepperoni stick and I found a variety called FIRE STICKS on one of the shelves. Being accustomed to false advertising in today's marketplace, I chuckled at the name and handed over my money.

Now, I guess the Amish have never heard of false advertising, because these things were INSANELY HOT!!!!! It was like the Amish sausage maker had learned how to stuff hellfire and brimstone into a meat flavored stick. But that wasn't the worse part. The worst was yet to come, and whether or not I wanted them to the FIRE STICKS would revisit me the next day......at work.

For those of you who didn't know, I had a job in the cash office of a grocery store in Guelph during my university years. The cash office was tucked away in the front corner of the store, and it was a small room with no windows to the outside world. In that room was all of the money the grocery store had on site and it was my job to keep it balanced and organized. Whenever I left the office, I had to lock all of the money up in the safe before I was allowed to leave. It was in this room that I had felt the first signs of gastro-intestinal trouble. Luckily for me, the staff washroom was on the other side of the store which made getting to the washroom in time a very difficult chore. Of course, on the way to the washroom, I got stopped by an elderly woman looking for horseradish. I think that's the hardest I've ever had to clench my butt cheeks together, but we found the horseradish. She probably wondered why I took off in a sprint to the back after we found it, but I didn't care. This was a matter of life and death now.

So after my first bout of liquid fire poo, I returned to the cash office, unlocked the safe, and pulled out all of the cash I was working on, just in time for the next wave of fire poo to hit. I had to lock up all the money again and make it to the washroom...again. This time, I sprinted the entire way, as to avoid as many shoppers as possible. I'm not sure how it was possible, but the second bout of fire poo was worse than the first. This went on for about an hour until my intestines were thourally emptied, and my back end felt like someone gave my butt 1000 paper cuts and then poured Tabasco sauce on it. It was only after I was sure that I was "cleansed" that I phoned the future Mrs. Price. She informed me that she had been going through the same thing and was currently sitting in a cold bath to find relief. We learned that day, to never EVER fuck with the Amish. If that's what they did to their customers, imagine what they could do to their enemies?

I wish the story ended there, but we never threw out the fire sticks. A week later, I was craving meat, and all we had was... you guessed it FIRE STICKS. Without thinking, I ate 2 or three, and then spent the rest of the night sweating and panting like a fool. Both Caity and I had to work the next morning and when Caity came home after her shift and checked the phone messages she heard this message from me.....

"Note to self.........THROW OUT FIRE STICKS!"

Remember folks, never fuck with the Amish, because sooner or later, they'll get you in the end.....

Day +150 Leukemia as a Plot Device Part 2

2005-04-09T13:13:00.000-07:00

Well, everyone is sick here with some sort of cold. It's kind of weird because we've been hiding out in this house for the last couple of months hoping to keep the germs out. Now, nobody will come visit us because WE'RE sick. It's like we're in an alternate universe, but I don't have an evil Spock goatee.

Speaking of sickness, did anyone watch Third Watch last night? The reason I'm asking is because one of the main characters just got Leukemia. Now, everyone who reads this will already know of my hatred of movies and TV shows that use Leukemia as a plot device, but I've got a different problem about this one. Now, I've never seen Third Watch before, but Caity's mom loves the show and is here helping out while we're sick. After one show, I can honestly say that I won't be picking Third watch again as I found it highly unbelievable in every plot line they had. The worst plot line revolved around a female detective who was dying from Leukemia, but was too stubborn, scared, or whatever to get medical treatment. She finally went to the hospital, and the cameras decide to show us cancer patients sitting in dark, gloomy halls with IV's going into them. Every once and a while one of the patients would give the cameras a weak smile, and most of them looked like they were on death's door.

Now, if you're THAT sick from the Leukemia, or the chemo, or the Graft vs Host, YOU ARE NOT SITTING IN A DARKENED HALLWAY. YOU ARE IN A HOSPITAL BED!!! If anyone follows Third Watch, let me know how this plot line pans out, because I'm interested to see how accurately they portray Leukemia treatment. And at least this time the person with Leukemia isn't a murderer, rapist, etc. etc. like on CSI or Law and Order.

So let's get on to ACTUAL Leukemia treatments. I am now on only four types of medication, two of which are to fight the side effects of the other two medications. The doctors switched me to a lower potency anti-biotic which has been rumored to have less side effects. Right now I'm fighting a cold, and the effects of the new medication, so once both go away, I should find that I'm able to do more than I was able to do on the old medication. As of next week, my body is free of imuno-suppressents, so it will be the first real test run as to how well my new immune system functions on it's own.

And another thing. I think I've become a hospital addict. I go there so much I seem to miss it when I'm gone. I miss it so much that I'm signing myself up for more medical procedures. I've had varicose veins in my testicals since I was born, and that causes blood to collect down in the sack area. The good part is that it makes my testicals HUGE and MANLY, the bad part is that it hurts a lot. Before the vein problem was diagnosed, I had been to the hospital 2 times to get it looked at. The pain was so bad the first time that I went to the Emergency room. The unfriendly doctor squeezed them a few times VERY HARD and told me I was fine. After I was diagnosed with Leukemia, I had the boys looked at again, but this time they took me more seriously. An ultrasound from a VERY ATTRACTIVE woman finally found the problem. There is nothing more awkward then having one of the most beautiful woman you've ever seen repeatedly rubbing your groin with the ultrasound gun. (Think unsexy thoughts, think unsexy thoughts, think unsexy thoughts)

Anyway, to make a long story short, the solution to the problem is to cut into the testicals and shorten the veins, but this carries a high risk of causing infertility. Well, at the time Caity and I were in the baby making process so the procedure was delayed. Now that we've got the twins, the plan is to go in for a procedure that will be a vein shortening/vasectomy combo. It will probably take six months to actually see a specialist who will then book the procedure for a year down the road, but at least the ball (pardon the pun) is rolling.

That's it for today. It's the season finale for Battlestar Galactica, so nobody bother me from 6-7 pm.

Have a great weekend

Day +146 What do you mean it's not real?

2005-04-05T00:15:00.000-07:00

Ok, a little late, but that's ok. Let's get back to the topic at hand shall we?

I think that I would be dead right now if I was still living in the old rental house Caity and I lived in. There was mold everywhere, and I've yet to see another house in such a bad state of repair. I really wish I was kidding, but this house was gross. It also was only 475 a month for the entire house and it had a big backyard for the dogs, so I really shouldn't complain. Living in that house for a year allowed Caity and I to save for the house we're in now.

For those of you who don't know, Caity and I built a house in the SW corner of Calgary, and everything is brand new. There's no mold, no mysteries about what toxins may be in the air, it's probably more sanitary than the hospital room I lived in. I think that living in a clean environment has really helped keep the germs away from my fragile little immune system. Right now it looks like everyone including the twins is under the weather right now, but most of the time it's pretty easy to keep away from nasties in here.

Now, regarding the twins, they keep us BUSY!!!!!!! If I was left to my own devices, I would be a beached whale, permanently affixed to the La-Z-Boy watching Star Trek all day. With the kids, life is always moving, even if nobody in the house actually is. We're always holding them, or changing them, or entertaining them, so it's hard to notice some of the side effects that I usually experience throughout the day. I look at the clock and it seems to jump ahead by hours instead of minutes and before you know it, it's midnight, and the kids are in their cribs fast asleep.

I can understand the difficulties of producing twins on command for every bone marrow transplant patient, so I suggest that you find something else to keep you as busy as twins. Try making a time machine, or set a goal to figure out if the answer to the ultimate question is really 42. Both of those tasks should approximately equal the time requirements of raising twins. I guess if you break it right down to the basics, the morale is to not let yourself dwell on the cancer. If you can ignore it, you actually forget that you were ever sick.

And honestly, aside from trying to figure out financing for my company's stock plan, life hasn't been too stressful. Mind you, I 've been under the influence of a marijuana derivative for almost 5 months now, so that might be why I'm so relaxed.

That's it for today, and thanks to Jenn Jasinski for making me forget wrestling is fake for a few hours. Wrestlemania this year was a blast thanks to Jenn and her enthusiasm.

Day +143 Reflections

2005-04-02T00:13:00.000-08:00

Don't move into a new house, have twins and schedule a bone marrow transplant all in the same month unless you really, truly enjoy being overwhelmed by stress - Me Nov 1st 2004

That's one of the first things I wrote in this journal of mine. It was even the opening quote in the Calgary Herald article on me in November. It is also 100% wrong. I would like to retract that statement and replace it with this one.

~~Don't~~ Move into a new house, have twins and schedule a bone marrow transplant all in the same month ~~unless you really, truly enjoy being overwhelmed by stress~~.

I don't have time to write about my change of mind since we've got Battlestar Galactica on in half an hour, and then dinner at the Cooper residence, but stay tuned as the answer will be up in the next 24 hours.

Later.

Day +141 Money, Drugs and Power

2005-03-31T00:11:00.000-08:00

I just came back from my last appointment at the hospital and it seems that I've been pushing myself too hard as of late. My workout program might be the cause of my increased morning sickness. I'm up to level 15 on the elliptical machine for 30 minutes, but I pay for it over the next two days as my body tries to repair itself. I'm finding this rather frustrating since it feels easy while I'm working out, but the recovery time is slow and I hurt more than I should afterwards. I keep thinking that July 1st is a little early for a return to work date, since I have yet to live through one whole day without feeling like shit somewhere along the line. I try not to go out when I feel like hell, so most people don't even realize that I'm sick anymore. Nobody but my wife and some close family see the real me, and I think I need to stop hiding how I feel to myself and to others if I'm going to make this recovery work.

I was up until 5 last night. It seems we're still fighting with the insomnia, but I've discovered that Shaw's video on demand service has freebees during the week. I saw a cool show on sea snakes last night. Hey, it's free I'm not going to argue with that. Besides it was narrated by David Suzuki, the sexiest Canadian alive today so how could I say no?

So, getting back to this go back to work plan, I need to give some of you an explanation as to why I wanted to go back so soon. I was able to purchase stock from my company last year before we started operations. The stock has a one year holding period which means that I can't sell it until July 1st of this year. The stock currently is about 3 times its value, and I bought about 50,000 dollars worth of stock. If all goes well, Caity and I are looking at a sizeable reduction in our mortgage in a little under three months. I wanted to be back at work so that I didn't feel guilty about taking a huge payday while not contributing to the success of my company. It looks as if that was too big of a goal for me to accomplish. It seems that I've completely underestimated the recovery time I would need to beat this thing. So I'm looking at September 1st as a new starting point. It gives me two more months, and allows me more time to really recover, and not just put on a good show for a couple hours during the day. My doctor says it's up to me when I want to return to work, but she did caution me on the dangers of returning to work too quickly. I can really set myself back if I push too hard, so I'm slowing things down.

As of today, I'm no longer pushing myself at exercise. The elliptical will be at a moderate pace and moderate difficulty, and the weight program will be changed to rebuild specific areas of my body like my hips and rotator cuff. Those two areas cause me a lot of pain since the muscles that hold the joints together are weak and loose. I'm going to stick to lifting babies instead of iron. They actually get a laugh out of being hoisted overhead.

I'm trying not to see this as a setback. I'm trying not to be disappointed with my body because of what I see as slow progress, but there are some days when I just want to look up to the sky and scream "Haven't I been through enough?" I'm tired of being tired and pukey all day. I'm tired of feeling like a drain on the resources of society and I want to be productive again. This current state of affairs is killing my soul, and I don't want to do it anymore. The sad thing is that I already made the choice to do this last July and it's too late to go back. I never thought I would look fondly back at the days when I had my own bone marrow. I can't complain about the new stuff since it hasn't killed me yet, but it's really taking a lot more energy to sustain then the old stuff. If it weren't for that pesky bout of CANCER, my old bone marrow would be perfectly good. Oh, well at least I'm not dealing with Gleevec anymore.

Speaking of medications, my levels keep going down. I've been off the Prednesone for two weeks now and I'm slowly getting used to the lower energy levels. I'm down to 50mg 2x daily for the Cyclosporin and I get to drop 25mg per week until I'm off it. I've got to stay on two other medications for a full year post transplant, but I'm really hoping that most of my side effects are from the Cyclosporin. It would really suck to have nausea for a full year so I'm hoping that I'll feel more human as the Cyclosporin tapers off.

That's it for today. I'll write again soon.

Day +131

2005-03-21T00:09:00.000-08:00

I felt like a human being today. I woke up and felt pretty good so I cleaned the kitchen and bathed to girls. After that I made an appointment with the bank to nail down some short term financing for the summer until our stock can be sold. In other words, I had a normal person day. I was productive, I was out in public and I was downtown. It was great. I would have stopped off at work, but it was past 4 when I was done at the bank, and Caity was picking me up with kids in tow. It's amazing what you miss when you're gone for a while.

I'm finally getting over my scare with pneumonia. The lymph nodes in my neck are not as sore, and I actually did a 40 minute workout on the elliptical machine at level 13 last night. I'm going to be starting a very basic workout schedule this week and when I say basic, I mean basic. My last attempt to start a workout program ended up in disaster so I've got to start from square one this time. I feel like one of those old ladies on television that does aerobics sitting in a chair. My shoulders have no strength in them at all, same with my hips and since I'd like to go back to the gym in April, I need to at least get my body warmed up to the feeling of lifting weight again.

Right now, I'm going solo with the kids since Mom is out at a movie. We came to the conclusion that we don't get out enough, but finding a sitter willing to take twins is difficult. We're also having trouble trusting strangers with our kids, but we feel that the Price family sitters have been overworked as of late and need a break. We've found a lady who baby-sits other twins, and has come highly recommended by the twin's mother so that makes me feel a bit better. I can't remember the last time I got out of the house with my wife that wasn't a trip to the hospital. I'm even willing to go out to a girlie movie if it doesn't involve drawing blood or getting x-rayed.

So if I keep getting better, it will be time to think about going back to work soon. I wish I knew what the hell was going on with that. The doctors are not willing to give me a firm date, and they've basically said that with bone marrow transplant patients, 50% are back to work within one year. My long term disability benefits are covered until December so I could theoretically ride this baby until Christmas without breaking any rules. Technically I'm making more money on disability than I was when I was working. I only get 66% of my salary, but I don't pay to commute, and I don't get taxed on my disability income. Problem is that I've never been great with sitting on my butt. My dad raised me too well to pull something like that, so I'm still aiming for July 1st as a start date. I want to make sure that I can handle a full day's work first, so we'll see how my fatigue changes as I drop some more of my medications over the next month. I really am looking forward to getting back to a normal working man's life, I just don't know when that date is yet.

My only regret for wanting to go back to work, is that I'll miss my kids. I've had such a wonderful opportunity staying at home and watching them develop and I know that not many men get this chance. I think that's why dads are more distant with their kids than moms. It's simply a matter of staying home and being with them. If you watch them enough, you start to see and hear the things that only moms seem to notice. Caity is still the master of that ability, but I like to think that I know my kids better than most dads out there. It's been a blessing being well enough to enjoy the twins this last couple of months, and that's the biggest thing I'll miss when I go back.

However, they're both going ape-shit right now so I've got to go feed them. I won't miss the screaming, but I will miss everything else.

Day +128 Slacker

2005-03-18T00:08:00.000-08:00

I've been informed that I don't write in my journal enough anymore. In my defense, I live the same day, day in and day out. I'm stuck in the movie Groundhog Day is seems with Caity and I doing the same thing every day. It's not our fault though. Having one baby is a chore, but we've discovered that twins are more than the sum of their parts. Together they form a super baby, requiring at least two and a half times the care of two separate babies.

I'm more than likely exaggerating the work requirement of twins, but some days it seems like they are too much work. I'm having a rather significant bout of fatigue lately and that makes everyday life seem harder than it really is. Right now the best I can manage is to go to the dog park and watch TV all night. The reason Caity and I sit around and do nothing except go to the dog park once a day is twofold.

Reason #1

I'm too tired to do much, and getting out of the house has become more difficult. You try finding places to go with 5 month old twins and an immuno-suppressed husband that can't be around crowds or sick people.

reason #2

We're freaking poor right now. My long term disability gets paid once a month at the end of the month. Since I went on long term disability at the end of February, I don't get paid until the end of March. Combine that with Caity's reduced maternity benefits, and we're effectively working on 1/2 an income until I get my monthly deposit.

Truth be told there is a reason number three. I'm still afraid to go out in public. I'm afraid of getting sick again and ending up in the hospital fighting a nasty virus. Take pneumonia for example. Pneumonia could seriously complicate (and shorten) my life, and it turns out that someone who was in my house not more than a couple of days ago has come down with pneumonia. Right now, the glands in my neck are swollen and sore, but I haven't developed a fever yet so Caity and I are just sitting around waiting to see if I get sick or not. It seems like only the kids in the Price/Bregliano/Cooper family are getting sick, but since my immune system is essentially the youngest in the whole family, I'm almost expecting to get it. I've read how nasty pneumonia can be on a bone marrow transplant patient's body, and I do not want that by any stretch of the imagination.

So I'm afraid that I'm going to get sick and die, but more than that, I'm angry at myself for letting the rules slide when it comes to my recovery. I've been living a little wild (well, for a recovering transplant patient) and that needs to stop. I've come too far to be stopped by a little nasty piece of viral RNA.

That's it for tonight. If I remember, I'll complain a bit more about being tired all the time in my next entry. It really sucks and it's a constant hurdle in my quest to regain a normal existence. At least my hands aren't cracked and bleeding anymore. It makes for easier cleanup when I can actually touch cleaning products without wincing in pain.

Day +124 Regrets

2005-03-14T00:07:00.000-08:00

I'm not exactly sure how to go about writing this since it's totally off topic from what this journal is supposed to be about. I've most likely been reading too much of Pete Rainford's blog since he has such an eloquent way of talking about life as it happens, and I publish the first draft of whatever garbage pops into my head. In fact, I blame Pete's magical wit for my latest dissatisfaction with my journal. I've caught myself reading his stuff and thinking "Wow, that's some good writing. how can I top that? But I keep reminding myself that, well, Peter Rainford is Peter Rainford and there's no sense in trying to out-write him. Pete, I love you man, but I just can't compete with your rapist wit (see Carrey, Jim - Dumb and Dumber).

I'm off the Prednesone now so my insomnia is not drug related. It happens to be baby related. Now, I've made no attempt to hide the fact that babies aren't my most favorite thing. I've been successful at avoiding them for most of my life up until recently, and I thought that I had my feelings in order when I went into this whole baby thing with Caity. I would tolerate the babies until they were old enough to walk and talk, and then the fun would begin. I've always considered myself a "toddler man" and Caity and I agreed that she would take the first 2 years of their lives and I would handle them from 2-13. When the twins were born, something happened inside me (see Carrey, Jim - The Grinch who Stole Christmas) and I knew I was forever changed. I didn't really understand what had happened until a couple of nights ago.

I was walking the dogs at about 11:00pm at night. I think it was the same night that I threw up 6 times, but it could have easily been yesterday. Anyway, I'm walking all alone, in the dark, in the middle of a huge field, and I'm staring at the night sky looking for planets, familiar constellations etc. like I usually do at night in the dog park, when I have a "moment". You know, those times when you just stop what you're doing and think "I'm the luckiest man in the world!!!". I'm alive, I've got the perfect little family (a beautiful wife, two gorgeous kids, two affectionate dogs, and two even more affectionate cats). I've got a brand new house, a mostly new car, and a great job with a great company. How could life get any better?

I know. We could have another kid...

and that's when I realized what I had done. I didn't save any sperm before my chemotherapy sessions.

I'm not sure why, but I feel a great sense of loss over not saving sperm. I know that other parents know what I'm talking about when I say that your own kids have a special look they give you every once and a while that makes everything ok. One look, and all the crying, all the diaper changing, all the baby puke is all worth it. And here's the kicker. They flash you "the look" more and more as they develop. I would say that right now, almost 80% of my time with them I get "the look". If I could listen to the thought process inside my daughter's heads, this is what I imagine "the look" sounds like.

"Hey, this is a neat toy. I wonder if I can fit it all in my.....OH MY GOD!!!! YOU'RE MY DAD!!!!! I KNOW YOU!!!!! THIS IS THE GREATEST MOMENT OF MY LIFE THIS IS....hmmm I wonder if I can fit this toy in my mouth...."

I never said it was a long moment but to me it's pretty powerful. I imagine it's nothing compared to walking in the door to your own house and being greeted to squeals of joy and loud yells of "DADDY", but right now I can barely handle "the look" without getting emotional. Every look, every smile, every giggle I get from my kids is one more thing that I might not have been around for if things had gone badly with the transplant. Yes, I still hate the crying, and the fussiness, but it's all worth it when I pick up one of my daughters and they look at me like I'm the greatest thing in the world. That's why I was feeling regret for not saving sperm. I now understand why everyone was telling me to store some away before the transplant. Creating a life is the greatest thing I've ever been a part of, and I no longer have the option of making more. Well, there's a slim chance that some of my production capabilities are still intact, but from what I've been told, chemotherapy is very effective at destroying any desires one may be entertaining about having more children.

So that brings us back to the dog park in the middle of the night. I stopped, and thought about being sterile, and I almost wanted to cry right then and there. As a man, we rarely feel comfortable crying in public. Other men tend to point at us and laugh so we have to cry in private. I was so sure that I only wanted two children before the transplant that I never seriously entertained the idea of banking sperm. Now, I might not have the option of creating more. If I had been given chemotherapy when I was diagnosed, I most likely would not be writing about my perfect little twins today. Caity and I are very lucky that we got to be parents at all, so I shouldn't be so down about the whole sperm issue, but if you could feel how happy my kids make me when they smile at me, you'd understand why I'm sad at stopping at two. I really wish I could go back to pre-transplant Adam and tell him to bank sperm, but it's too late for that.

You know what? I've got some pretty nice kids, and I actually enjoy spending time with them. I never thought I'd say that about a baby, let alone two of them. I still reserve the right to be ambivalent towards other people's babies, but as far as my babies are concerned, they will always be the apples of my eyes. They are my sun, my moon and my stars. They are two of my three favorite women of all time, and I don't know what I would do without them.

By the way, is it too early to get emotional when I see a commercial about a young bride and her father on her wedding day? It is?

Oh, shit, I'm in trouble.

Day +123 Leukemia as a Plot Device?

2005-03-13T00:05:00.000-08:00

Caity told me I had to write about this, and I guess it's no more embarrassing than anything else I've admitted to in this journal. We're watching Extreme Makeover - Home Edition right now. It's the one with the 8 year old cancer patient that just wanted the design team to makeover the hospital wing she stayed in. So the design team decided to completely redo her house as well without telling the family. So, it seems like every time the subject of cancer comes up I get a little emotional. I get all sappy anyway with this show, but when they deal with cancer, it really affects me. I was sitting here crying away at a particular moment and Caity offered me a paper towel to dry my tears. This was my reply.

"No thanks, I like the texture of a receiving blanket better"

God, I suck.

On the other hand, you really notice how much the subject of cancer comes up in the plot lines of a lot of prime time shows. Every CSI incarnation has had a murderer who had Leukemia, I've seen the same thing with every Law and Order out there (except for the new one with the actress who played Lillith on Cheers). Even M.A.S.H. had an episode where a young private (played by a strapping young buck named Patrick Swayse) finds out he has Leukemia When you find yourself crying after watching an episode of Law and Order you know you've got some unresolved issues.

That's about it. Gotta go cry some more.

Day +122 Pukie Returns

2005-03-12T00:04:00.000-08:00

I've got to tell you about the fun day my family had yesterday. From the moment I woke up I knew that something was off. I think if I had been any other person I wouldn't have thought twice about how I was feeling, but because of what I've been through I knew that it was not to be a good day. Well, I was right about it being a bad day since I broke my old post-hospital puking record of five vomiting sessions in 12 hours. I threw up six times in 12 hours yesterday. Fun huh? Caity had a problem with the other end of the plumbing and between the two of us, we were running to the bathroom every half hour. I actually had to specify which toilets in the house were to be used for vomiting, and which toilets were to be used for diarrhea. The simple reasoning behind that was so that I didn't have to spend large amounts of time with my head in a smelly toilet bowl. When you feel as nauseous as I felt yesterday, you don't need any more help getting things out of your system and sticking your head in a smelly toilet is not something you need when you're puking your guts out. The upstairs guest bathroom is officially the puking bathroom if anyone is coming to visit in the next little while. That means no number 2's are allowed in there until I feel better.

That being said, I have other news for my fellow Graft vs Host sufferers. I think I've solved the problem of itchy hands. For those of you who don't know, I've been dealing with a rash on my hands for about a month now. It was really itchy at first, and then the lines on my hands and the joints of my fingers dried up and cracked open. I've literally been drenching my hands in Gold Bond Medicated Skin Lotion (in a green bottle) and it seems to be helping. That stuff smells quite a bit so I've been using Caity's Oil of Olay face cream to keep the skin on my face from doing the same as the hands.

So I've been dealing with cracked, bleeding hands for about a week, and now I've got to deal with weak fingernails. During the month of November, my fingernails growth was disrupted by the chemo. As of last week, the weakened nail sections have grown out to the point that the weakest part of my nail is at the tips of my fingers. They catch on everything and just basically hurt all the time. All I can do is wait for my fingernails to grow out, so that I can chew off the weak thin parts.

Yes, I'm a nail-biter. I have been for as long as I can remember. I've tried everything under the sun to stop, but in the end I've just decided to wash my hands before I chew. My doctor at the Tom Baker is a nail-biter as well, so she didn't seem to give me too much flak about it being un-hygienic. I thought about using that clear nail polish that tastes horrible, but given the fact that I can lose my lunch at any given moment, adding another foul tasting substance doesn't sound too appealing.

So that's about it for today. We're staying in tonight to recuperate so it's a full night of TV watching and snacking. That's ok by me since it's almost time for Battlestar Gallactica. So we've got chocolate Snackin Cake, pink lemonade, and lots of leftovers. Let's just hope that I'm hungry.

Day +118 Manly Puff

2005-03-08T00:02:00.000-08:00

I got an email today from a girl named Ashley that touched me more than I thought possible. I'm not going to print that email here, but it will be saved in my personal section that I don't publish. With your email Ashley, you have confirmed to me that my diary has indeed helped someone and I thank you for that. Plus, she thinks that I have really cute babies so that's another reason why I like getting emails from her so much. Ashley, if you're reading this, I'm always here if you want to chat, and I'm glad that you're finally becoming as happy as you deserve to be.

As far as any medical updates go, my rash has changed and moved to my back and legs in the form of pins and needles when I sweat. It's like getting hit with hundreds and hundreds of little arrows from a marauding Lilliputian army. Go borrow Gulliver's Travels from the library if you missed that last joke. Seriously though, it hurts like a M.F. if I let the sweat stay on my skin for more than five minutes, and has actually made me cry out in pain at times. My remedy for the sweat problem is to super-exfoliate with my Oil of Olay bodywash and puff.

Ok, done laughing? Yes, I am a puff user. I don't think it makes me any less manly. In fact, I think that forcibly scraping layers of skin of my body twice a day sounds more manly than simply using soap. The only unfortunate thing about the puff is that it does not come in manly colours. I think mine is a mauvy-purple which is about as non-manly as I'll go in the palette of possible puff colours. I'm still looking for a camouflage patterned puff, but until that day comes, I shall use mauve and be happy about it. It's all about the skin scraping power of the puff anyway, and my mauvey-purpley puff is still pretty rough on the skin. We've got a pumice stone brush as well, but that's a place I'm just not prepared to go to at this stage of my life.

Let's move away from the discussion of beauty products and talk about something more dear to my heart. What's with all the mucus? I'm serious here, are there other bone marrow transplant survivors that have uncontrollable post-nasal drip? I've been told not to worry about it unless it increases or changes colour, but I'm almost considering skipping lunch permanently due to the sheer quantity of snot that I snort back every day. I'm not sure what the nutritional elements of snot are, but I'm most likely getting 100% of my daily recommended intake. It's obviously not helping with my energy levels since all I want to do is sleep these days. I don't think it's a cold since I've had it for too long, so it's most likely GVH. The only thing to do now is to hope that it goes away with time or buy shares in Kleenex.

I promised Caity I'd make this one short, since I disrupt her sleep when I come to bed late. Tomorrow morning I'm off to get my monthly IV of immuno-globulin which means I've got to go in early and be pre-medicated with Benidril (sp?) to avoid the total body rash I get when I receive blood products. This is also the first time I've needed anything IV since my line came out, so that means that they've got to go and poke around for a vein in my arm. I've got big "easy to hit" veins, but what I wouldn't give to have my central line magically re-inserted just for tomorrow. Oh well, if I can withstand the manly pain of exfoliation I can deal with a little needle, right? Anyway, off I go stealthily to bed. I'll most likely step on a cat or two on the way up the stairs, and run into the crib in the bedroom on the way to bed like every night, but that's the life I live.

P.S. I love my puff, so don't give me any sh*t about it alright? :-)

Day +113 Energy Levels and my hatred of Commuting

2005-03-03T00:00:00.000-08:00

It looks like I didn't explain my remission status very well. I've had a few questions on it so here's what the makers of Gleevec have to say about it.

To date, Gleevec treatment has led to hematologic remission (control of WBC levels) in almost all patients. In about half of CML patients, Gleevec treatment is also associated with cytogenetic remission, in which the Philadelphia chromosome becomes undetectable. However, molecular remission (elimination of CML cells as determined using a more sensitive molecular method called PCR) occurs in less than 10 percent of people who receive Gleevec. Overall, it is estimated that about 80 percent of people receiving Gleevec still have the Philadelphia chromosome, either because it was never eliminated or the mutation recurred.

So there you go. I never promised anyone that my ramblings would be acurate or factual. Like the great Obi Wan Kenobi once said "What I told you was true, from a certain point of view".

As far as today goes, I woke up with what felt like a sunburn on my face. It turns out that I just had dry skin, combined with a little swelling which made the skin feel tight. I've never had that side effect before, but I've come to expext weird things from my body for a couple of days after a medication change. I'm down to 5mg of Prednesone as of yesterday and with every decrease comes a coresponding decrease in energy levels as well. I also have chosen to remove the anti-acid pill, as well as the "bowel relaxer" from my drug regimen. It seems that the Tom Baker Cancer doctors consider those medications optional right now, and I'm not taking anymore drugs than I need to.

So other than that, I'm tired, sore, and unmotivated. I'm still going to go work out on the eliptical machine tonight. I've made a promise to myself that I will get on the thing 5 times a week. Now that Caity and I live so far away from downtown, I'm going to have to get in shape if I hope to ride my bike to work in the summer. It's about a 20km ride each way, and if I'm not training my body to lift stupid amounts of weight, I might as well train it to ride stupid distances to and from work every day. The easy solution would be to simply take the bus like all the other commuters to cheap to drive, but I would rather roll in glass than get packed in beside smelly overweight businessmen and women for two hours of each work day. I hate public transportation. I fully support it as a means to reduce polution, but I refuse to use it unless I absolutly have to.

Well, the call of the baby beckons me, so I must attend to the problem. Ara has learned that pushing large volumes of air past her vocal cords makes a loud, obnixious noise, and she can hold the same cheese-grating tone for a good ten seconds if she wants to. It usually ends up morphing into a fit of rage, like right now for example. Ok, Ok, I really gotta go. Duty calls.

P.S. Kayla, if you're reading this in the future, don't think that you behaved any better, you just happened to be sleeping when I wrote this.

Day +112 Remission?

2005-03-02T23:59:00.000-08:00

Remission. It's an interesting word. I find myself having trouble saying it without getting a little choked up. There's a lot of emotion behind that one little word that I didn't know existed untill I heard the word used to describe me this morning. I am, as of February 3rd 2005 am in cytogenic remission. That basically means that there is no sign of the Leukemia in my body. According to another, fancier, more expensive test, I still have the genetic material that causes the cancer, but they can't tell how much there is left. The doctors told me that there was a slim chance to be at this stage at the three month mark, and they prepared me rather well for the test results to be Leukemia positive for the next 6 to 9 months. Now that I'm here, I find myself at a loss for how and what to feel. I mean, it's not like I can go back to my normal life yet. I'm still recovering from the whole bone marrow transplant deal which seems to be the only thing I'm fighting right now. I still can't go back to work, and I still can't go out and enjoy a movie, or a trip to the mall. Nothing has changed, yet in the same breath, everything has changed.

Speaking of change, I am as we speak regrowing my shimmering golden locks of hair. Last week in Canmore my hair just decided to come in so I'm letting it go to see what it does. As of today, it feels like a really close buzz cut, with only a few small thinner patches on the back of my head. I find myself rubbing my head constantly, simply because the feeling of hair is still a new sensation. Oh, and yes for those of you wondering, there is new hair everywhere else as well. And when I say everywhere else, I mean everywhere else. My shoulders and back are covered in a soft fine baby hair. I have a full chest of hair and it goes ALL the way down to my toes if you know what I mean. It's really itchy at times, but luckily the rash on my hands itches worse so I don't notice the back hair itch as much. I'm hoping that all this extra hair will fall out as I come off the drugs, and I promise that I will never EVER joke about my chest hair as "looking like a chemotherapy patient" ever again.

Day +110 Starting Slow

2005-02-28T23:56:00.000-08:00

I haven't updated in a while since not much new has happened to me. I was starting to lift weights, but I've found that holding weights in my hands is a new experience in discomfort. why you ask? Well, it seems that Graft vs Host loves to go after the palms of the hands. So I've got a rash on my palms right now, and the sensation alternates between itchy and sore. The steroid cream seems to help a bit, but I'm going to stick to the elliptical machine for a while to build up my stamina, rather than leaving little bits of hand all over my weights downstairs. Oh, did I forget to mention that the little bumps on my hand tear off easily? It's probably much worse than it sounds, but it's still a bit annoying.

I think another reason I'm going to lay off the weights is that I'm not ready to lift the way I want to yet. I don't have the energy most days to complete a workout. Caity tells me that I should start slow and build up to my former self, but it's really frustrating when you can't get through a set without feeling like you're going to faint. So here's the new plan. I'm going to build up my body on the elliptical, while lightly training all my weak points that I found during powerlifting training with Bruce. I found that my shoulders, lower back, triceps, and grip were all weak points when I was powerlifting. Weak points cause injury, which I found out several times, so I've decided to take this recovery time and make strong points out of my weak points. That way, when I come back to training to become best in Canada, I will have a solid foundation in which to really build a powerful body.

Now, I was blessed with a body that responds (or used to respond) well to weightlifting. I think I've been able to retain that ability since I'm up to level 10 on the elliptical after only a couple of weeks using it. I remember a time when I could go for an hour at level 20 with the calories burned per hour display flashing "999". I'm not trying to brag, I just want people to realize just how much cancer takes away from the average individual. I also want to make it very clear how difficult it is to adjust to the "new you". A 45 pound weight plate used to feel as light as a cloud (my biggest squat used 12 of them). Now, the effort in loading one plate on each side of a bar to bench press 135 is a lot of work. I keep having dreams about going back to the gym and re-joining the gang, but I'm not even in their league right now. I would do nothing but slow down the process, so I've got to build myself back up a bit. Oh, and I want to say Good Luck to those of you competing in Okotoks on March 26-27th. If anyone in the Southern Alberta area wants to check out my passion, give me an email, and we'll go down to Okotoks together to watch the lifting.

That's about it for today. Sorry about the lack of gory medical details. I get another dose of immuno-globulin next week, and they've got to pre-medicate me beforehand so I'm pretty stoned during the process. I'll bring the laptop then and write an entry while I'm high, that should make for an interesting read.

Day +106

2005-02-24T23:55:00.000-08:00

clI've got nothing new to add, I just figured that I would let everyone who reads this know that I'm not dead. Life is going on as usual, and there's nothing new to report medically. I'll sit down and write on the weekend.

Hope everyone is doing well.

Day +102 Back to the Basement

2005-02-20T23:53:00.000-08:00

So this one's going to be short. I've been puttering down in the basement for the last two days seeing what I can do with my weights now that the central line is out and I think that I can accurately state that I lost 2/3 of my strength because of the transplant. Every excersize that I've tried has been about the same. 2/3 of what I used to be able to do. Now to be fair, Caity wants me to tell you that I'm now as strong as a normal person. I'm not sure how that's supposed to make me feel better, but she told me to write it. so that's it for today. Downstairs for 1/2 an hour on the eliptical, and then we'll attempt some light squats in the afternoon with a bit of arms and shoulders thrown in if I feel up to it.

Day +100 A Major Milestone

2005-02-18T23:48:00.000-08:00

So this is it. 100 days post transplant. We celebrated by waking up at noon, walking the dogs, and sitting at home watching TV and cuddling the girls. Basically the same routine we always have. We kind of celebrated the 100 day post transplant at my birthday party, but I am amazed at the lack of fanfare in my own head about the event. I made it 100 days with a new organ in my body. The fact that I'm still alive is a bit amazing. But that's just it. I'm not jumping up and down in celebration. I didn't even realize that it was day 100 until about three or four hours ago, so that just goes to show you how meaningful the day was.

Here's the problem as far as I'm concerned. 100 days seems like a lot, but it's not that big of a deal when you're told that it will be a long, long time before I'm declared cured. In my attempt to downplay to bad aspects of my cancer, I think I end up downplaying the good. Don't get me wrong, I'm very happy I'm alive, but celebrating 100 days might just be like the Japanese celebrating after Pearl Harbor. If they had known that the U.S. had a nuke, I bet the partying in Nagasaki and Hiroshima would be much more subdued.

Comparing cancer to a nuclear explosion made sense when I first starting writing that last bit. Cancer in most cases hits with a force that no one really expects. It devastates the soul much like a shock wave rips through buildings and flesh. Those who survive the first blast walk the earth pulling out clumps of hair while trying to figure out where their house went. Some of the survivors never make it more than a couple months before giving up, while some fight with every fiber of their being and live. And sometimes the fighters die to.

Now imagine watching that first Nuclear bomb fall from the plane knowing that in a minute, someone you love will be dead. You've now entered the world of the cancer patient's family and friends. It is for that reason that I think I downplay what the cancer effects to people in everyday conversation. No one wants to hear about the bomb. It's too hard for them to hear, so they think "Oh, he was mis-diagnosed" or "It's just like a six month flu". sorry people, it's CANCER. I caught family members and friends on several occasions downplaying the diagnosis when I first told them. My personal favorite is still "It's a good kind of cancer" That one still cracks me up.

Getting back to the role of the Cancer patient's spouse or family, I think they have a harder time with this than the patient. I admit openly to not remembering much about November. I also will admit to not remembering much about December or some of January. I went through some really horrible times, and I only faintly recall a few of them. I don't even dream about them. The rest comes back to me in flashes while reading what other people are currently going through. Caity doesn't like it when I read other people's journals out loud, and I often wonder why until I realize that she remembers every day that I was in the hospital as clear as a bell. While I was enjoying some wonderful hallucinations in my hospital bed, Caity was watching her husband die. Now, we all know that I didn't die back then, but who could have reassured Caity that her husband would indeed make it to 30. All a person in Caity's position can do is hope for something good to come from all the bad.

People ask me all the time when I'll be out of the woods. I laugh to myself every time I hear that. I will never be out of the woods. I have seen my own mortality and I can never go back to the normal world. With cancer deaths rising, rampant obesity, deadly viruses and numerous other diseases floating around, I have to ask you something...

Are YOU out of the woods?

Seriously, do you read this at work, and then think "Wow, poor bastard. Good think I'm not him". I don't smoke. I don't drink. I don't do drugs. I used to work out everyday and I could squat 600 pounds. I got cancer. Caity got a cancer patient for a husband. She lives even healthier than I do and she now has the joy of wondering when she's going to become a single parent for the rest of her life. She didn't even get cancer and she's suffered more than I have.

I guess in my own rambling way I'm trying to make the point that while being a cancer patient sucked a huge amount of ass, I would go through it all again if it meant never having to see someone else go through it. 250 people get diagnosed with my form of Leukemia every year in Canada and I always used to say that I'm glad the cancer picked me, rather than some single mother of two with no health benefits from work. I'd like to change that to include all my family and friends. I would take another three years of treatment if it meant that I never had to see any of my family or friends sick.. I'm not going to get my wish however. Someone close to me, on some future date will get sick and I'll have to watch them from the bedside while wishing there was something I could do.

After you read this, don't send me an email in hopes of disrupting any suicide attempts I may be considering. I'm of sound mind and body, and I'm not going anywhere despite what the tone of this journal entry implies. I want you to stop what you're doing, lean back in your computer chair, and think about how lucky you are. Find anything that you feel lucky for and hold that thought for a few seconds. If you happen to be religious, say Hi to your deity of choice. It's up to you. As for me? I'm going to think about how lucky I am to have a full tank of hot water waiting to fuel my extra-long shower tonight.

Why don't I use today's 100 day anniversary? It's just a number. It's like the odometer in your car. Rolling past the first 100000 kms is cool, but in the end it really doesn't mean much if you get squashed by a Mack truck three days later. 200th day? Big deal. The five year "official" cured date? Oh well.

"When I have lived to the end of my days, only then will I know that I have beaten Cancer." Adam Price. Feb 17th 2005

Day +98 Prednisone Increase...HULK SMASH

2005-02-16T23:45:00.000-08:00

Welcome to 4am again kids, which can only mean one thing. A Prednesone increase!!!! That's right. I had to go to the hospital yesterday to get a rash checked out. It's one of the ways the body lets you know that you might have Graft vs Host so they take it pretty seriously. Anyway the rash had gone from just my wrists and elbows to all over my arms and on my palms. It's not contagious, and it's not too itchy but the protocol at the Tom Baker I guess is to stomp on the Leukemia before it has time to do any damage. So here I sit, at 4am, buzzing from the 5 fold increase in my steroids, and a 50 mg increase in my Cyclosporin. I get to go back again in about 7 hours for my weekly checkup, so hopefully I can get this rash to go away within that 7 hours. I'm getting tired of feeling like the Incredible Hulk. Luckily there's no rage like last time, but I'm going to have to refrain from watching Everyone Loves Raymond. When you're on Prednesone, NOBODY LIKES RAYMOND. In fact, you're suddenly able to find fault or criticism with practically everything in life. It's amazing how much garbage there is on TV, and it's even more amazing that I somehow don't have the energy to get off the couch, DESPITE the presence of bad TV.

Oh, has anyone else noticed that TLC (The Learning Channel) has become the car restoration/tacky home reno channel, while Discovery has become the custom bike building/extreme engineering channel? I swear, every time I turn to one of those channels I'm guaranteed to find a car/motorcycle/home/build/renovation/contest/realtv/extravaganza. Don't get me wrong, I usually find those shows rather appealing, but lately I just want to get out of the house and live. I'm tired of sitting in the La-Z-Boy, waiting for the day to end so that I can go to sleep. I'm tired of watching immature men with fragile egos trying to make something practical into over-glorified junk within an insanely short time period. If this keeps up, I might have to go back to professional wrestling. Sorry Caity.

Speaking of which, she just sat down beside me to feed the kids. I rarely get to see the 4 am feed because Caity lets me sleep, but it's really neat to watch. She's got a whole system of blankets and breast-feeding supplies laid out in advance on the couch. All she does is sit down with the babies and everything is within arms reach to breastfeed. It reminds me of a hospital room right before an operation (kind of). Everything nice and neat.......and covered with black Labrador hair. Morley, it seems does not respect the surgical environment, and enjoys sleeping on all the supplies and blankets that Caity carefully lays out each night. All the soothers and such get re-washed.

I've now got Ara in my lap. Let's see if she wants to write anything.

fgfhghjdfdsp0-ikok''

Ok, so she doesn't have her father's natural ability, but it is a pretty good start for a 4 month old. Anyway, I've got to change the child's diaper now so I'm going to sign off.

Later

Day +94 Happy Birthday To Me

2005-02-12T23:44:00.000-08:00

BEST BIRTHDAY EVER!!!!!!!

Ok, I'm being serious here. Guess what I got for my birthday. Guess how much my wife and my family and friends kick ass. Here's what I got...

Money for MOTORCYCLE LESSONS and use of Jim Price's MOTORCYCLE for one season. That's right folks, I'll have my license as of May and I'll be able to boot around the city to my heart's content. Doesn't that just rock?

Honestly, I really have no words to describe how I feel about my birthday. I know that I make a lot of references to wanting a motorcycle, but it's simply amazing that my friends and family acted on it. Don't worry Mom, Jim's motorcycle doesn't do highway speed so I'm limited to 80 km/h and slower. But that's fine by me.

Ok, let's get off the motorcycle talk and get to something else. I woke up this morning with no nausea. I can't remember the last time that happened so it was quite a shock to me. The only things I did different that I can think of are that I had grapes to take my 7am medications and Hailey totally killed me last night with her 3 1/2 year old energy. I must have done 30 flights of stairs as well as throwing around and running after her from about 5pm to 11pm. So, by adding a light meal in the morning and really tiring myself out before bed, I seem to get no nausea. I'm going to try it again tonight to test my hypothesis, so if you suffer from early morning nausea stay tuned for the results of my little experiment.

I've got nothing else right now. Talk to you later.

Day +93 My Lawnmower Impersonation

2005-02-11T23:40:00.000-08:00

Warning: Most of this entry is me dealing with a moral issue and not the fact that I had my central line out today. This entry was written for the sole purpose of helping me work through some issues and is not directed at any individual or group. I'm very sad at the situation that has come up and I need to deal with it, or at the very least get it off my chest.

There are times that I hate the written word. I hated English class because I believed it to be an educational farce. I could read, I could write, but what I didn't appreciate was trying to pull the proper meaning from a story based on the teacher's point of view. I even wrote an essay that criticized the content and marking style of my English class in grade 12 ( I got an A by the way for that paper). Ironically, OAC English was the highest mark I ever received in my entire academic career. Interesting how I can be talented at something I despise.

I guess I went into my journal writing to provide a voice for my soul. I put it on the internet so that my story could help another cancer patient get through his or her day, knowing that someone else has traveled that same road and lived to tell about it. I needed to be true to myself, and capture the passion of the moment in all of it's glory or ugliness. That sometimes meant a swear word or two. Tonight I got a taste of how my words affect other people.

I know I offended someone with my words. They have written me and told me so. So what do I do? I've never met this person so I could simply ignore the complaint and go on my merry way. If I had the ability to do that there would be no need for this journal entry at all. But I can't, and that's the basis for the whole reason I'm up and bothered at 1:30 in the morning.

I once read a poster in my grade 4 French room (with Mr. Garside for those of you from Winona Public......une, duex, troix, SOTE!!!!!) that had a quote on it that has always been a part of my life. I'm going to have to paraphrase here because I don't recall the exact words.

"Swearing is the act of an ignorant mind trying to convey an intelligent thought"

It went something like that. In a nutshell, I suppose it would mean that if you take the time, and think before you speak, swear words are not necessary. I believe this with all of my heart, but there are several problems with this theory.

1. Life sucks sometimes. I've had some days in the past three months that could only be described by the F word repeated over and over and over again. I spent most of Tuesday wishing I was dead in between vomit sessions so if that doesn't call for a huge F@#$, I don't know what does. I've also been writing with a one draft concept. If it hits the screen, it stays in the journal. And for those bad days that I had I offer no apology to the content in this journal. I wanted to capture my true feelings, and some of those feelings were darker than I've ever felt. I could probably go through and edit out the swear words in this journal but it would lose something very important if I did. Cancer does horrible things to the body, and I can think of no better a disease to swear at then that.

2. The second problem is that there are a large vocabulary of words some consider quite offensive while I consider them to be rather benign, if used in the right context It's like certain hand gestures mean different things in different in different countries. All I can remember is that you never make the peace sign in England. I believe that the OK sign in certain cultures represents a particular orifice at the end of the large intestine. Anyway, I never realized until tonight that what I consider inoffensive may bother some people. I always thought I was a minimalist when it came to swearing. In fact, at one point I could stop a room silent if I swore because nobody expected that from me. I certainly don't try to use the BIG FOUR LETTER WORDS in everyday conversation but I never stopped to think about those words that fall into the gray area. You know the ones I'm talking about. We've all giggled at one point or another in our lives while looking up these words in the dictionary. Then to our shock and alarm, we realized that the "But it's in the dictionary!!!!" excuse didn't fly too far with the parents. Well, it looks like I'm guilty again, but this time it means something different, something more important.

I believe in this journal. I believe that it is helping me, and I believe that this journal is helping others deal with the daily garbage of cancer and survivorship. I owed the cancer community a huge debt, and this is how I felt I could best repay that debt at the time. I've only ever seen positive emails about my site, and this is the first time someone said anything to the contrary. So now this is why I'm stuck. This is why I'm still not in bed at 2:16 in the morning. How do I vent my anger, my disappointment, my pain and be true to how I'm feeling without alienating some of my audience. Like I've said before, I've been through days that made me dream of dying. I may have received my highest marks in English class, but I know of no other way to describe the road I've been down (and still travel) than with the words I chose.

I wish that I could keep this journal a little cleaner. My daughters will read this one day, and I want them to be able to know what their dad went through without having to put this journal on the shelf until they're ready. However, I cannot in good conscious describe Tuesday's vomit session as simply "unpleasant". there were days when I went straight to the computer after cleaning the puke of myself in order to catch the mood. I have to continue to write what I feel to be true to my feelings, and if that means a swear word or two, well then I can't apologize. I am however going to make a strong effort to get rid of the casual swearing that I'm sometimes guilty of typing. I have never meant to do anything with this journal but help, and I hope that those of you out there who read this will understand when they see an inappropriate word or two.

I think I'm done with the venting. As for the central line, well he and I have parted ways. My central line now sits on my kitchen counter in a bio-hazard bag. I had to keep it because it was in my body so long it became a part of me. I've actually caught myself reaching for it even though it's not there. I guess I really liked playing with it but I'm not sad to see it go. The cats kept playing with it at night when I slept, and the babies kept ramming their heads into the plastic clips on my line. This is very helpful when you're trying to calm them down at night. Nothing says calm and peaceful like banging your head into a sharp plastic clamp. (Maybe that's why Caity has better luck calming them down).

The line removal went a bit slow since my muscles were too big (I swear to God, the doctor said that....ask Caity she was there!!!!). He kept pulling out the scissors and scalpel to cut me deeper and deeper in an effort to get past my huge neck muscles and get at the line. I wish I could describe the moment he pulled the tube out. They had me focus on my breathing and on the third breath the nurse hauled up on the head rest causing me to get to almost a sitting position. At the same time the doctor did a "Lawnmower pull" and out it came. Think of a foot long tube coming out of your body real, real fast and imagine what that feels like. Even with the freezing there was still a lot of sensation when the tube came out. They also had to make another incision in my upper chest to get at the mechanism that locks to your tissues. I've explained it before, but I'll rehash to save you from trying to find the date that I talked about it. My central line was tunneled, meaning the tube came over my collarbone, and went under the skin about four inches towards my right nipple to reduce the chances of the line being pulled out. They add a device that allowed my tissue to grow around it and lock it in place to make it even safer. I guess there was a lot of tissue on the piece since he cut and snipped for what seemed to be an eternity to remove the piece. After that bit was removed it was basically pull and your done. It was ten times better than the line going in for those who are wondering. For those of you with a tunneled central line, it is a hell of a lot better coming out, trust me. My shoulder is sore and stiff, but other than that the healing process so far has been much better than when the line went in.

I have one more apology to make before I go to bed. This goes out to Jennifer McAllister(Morrison) who made me the fantastic necklace that supported my central line for almost 2 months. I'm sorry, but I have to put it away with the central line pieces. That necklace replaced the white medical string that the hospital provides and helped me downplay the "medical look" of the central line. I may have looked like a guy with cancer, but I felt a little more normal while I wore it. Jen, I love you with all of my heart, I'm looking forward to seeing you soon if your trip is still on, and I'm sorry that all of your hard work has to get filed away in my scrapbook pile. As normal as it made me feel, it became a part of my central line, and as a result needs to be put away so that I can move on.

Thanks for letting me ramble tonight. I had no intention of offending anyone tonight or ever with this little website . In fact most of this entry was centered around the fact that I did offend someone, and was feeling a lot of guilt for it. I learned a lot from the email I received tonight, and I thank the writer (you know who you are). You made me examine a lot of different aspects of my life, good and bad, and that's a great and appropriate 30th birthday present for me. I can't promise that I'll kill the swearing here, but I will try to remember that while this website is mine to do with as I wish, my outgoing emails need to have better attention to editing. I cannot simply blast off emails using the same language I use here without considering the recipient.

And about that "I'm so great at English" stuff I mentioned at the top of the entry. Yes, I am that DARN good and Yes I really think compulsory English in Highschool is a waste of time. I'm sorry to all the highschool English teachers I just offended. Wait a minute....no I'm not.

Night night

Day +92 Last night with the Central Line

2005-02-10T23:38:00.000-08:00

It's 2:30 in the morning and it's about 12 hours until I get my central line out. I'm having trouble sleeping because as much as I hate this tube inside me, it's become like a part of my body, and I'm actually going to miss it. It's saved me from at least 100 arm pokes and IV lines, so I owe it some thanks at least. I'm also getting another round of immuno-globulin and most likely more fluids before the line removal. It almost seems like they're trying to get as much use out of the line while it's still there. I can't say I mind because that's one or two pokes I don't have to worry about. I'd be really pissed off if they took out my line an THEN wanted to give me an IV. Watch, now that I typed it out, that will actually happen.

I've got a great story on vomiting that's up next so for those of you uncomfortable with the subject, please avoid the paragraphs in red..

So, I woke up on Tuesday morning to Caity giving me my Anti-nausea pill. For me it seems to work better if I take it at 7 am so that when I wake up around 11 or 12, the pill has already taken on the nausea so that I can take my morning pills. If I take the pill at 12 when I wake up, I'm useless until about 7 pm. Well, on Tuesday I woke up and took my pill, but I felt very strange. About half an hour later I woke up to a level 9 on the nausea scale. To refresh everyone's memory, the nausea scale is a 1-9 with 1 being the least nauseous, and 9 being the "you've got ten seconds to get to a toilet" level of nausea. 0n Why no ten? well, I figure that a 10 on the scale means that you're most likely already puking so a rating scale at that time is rather irrelevant. A 10 on the nausea scale is like a nationwide nuclear war warning system that beeps to tell you that you're in the process of being vaporized.

Well I happened to do that same activity another 4 times throughout the day, and when I wasn't puking, I was wishing I could. I blew so many blood vessels in my eyes that I looked like I got punched in the face. The total food and liquids intake for the day was a glass of water, and a bowl of chicken soup which I ate at around 8 or 9pm. It looks like my body did a 180 degree turn today and decided that I was to feel better. I still woke up feeling like hell, but I assumed that it was severe dehydration that made me feel shitty this morning. As a result of all this feeling sick, I now have a ton of energy and it's 2 freaking 30 in the morning and I'm wide awake. Oh well, better for you since it gives you something to read about while you're avoiding work.

Well, no more talk about vomiting, let's talk about rashes. I seem to have finally got one. The bumps are the same color of my skin, and they reside on my wrists, and elbows. I have no idea why it chose those two spots, but I'm sure that Dr. Chaudry will be happy. He's wanted me to rash ever since I was in the hospital so this will be an early Valentine's Day gift from me to him. It's not too itchy, but every once and a while I need to rip into one of the bumps. Nothing, and I mean nothing is better than a good scratch don't you think? I would want that to be my dying wish if I ever go the way of the dinosaurs. One good back scratch before I die, that's all I ask. It's like the joy of ripping of an itchy scab. Even though you know that ripping the scab off will cause it to bleed more and increase the chance of scarring, I will rip off any itchy scabs I get. I've got a few scars left on my body from some of the bigger scabs I've pulled off in my life, but all in all it was worth it.

I'm going to try sleeping again, but before I do, I want to give a shout out to Adam, my 11 year old brother-in-arms who started his fight to beat Leukemia last Thursday. He's got a central line, and if he followed the same schedule I had, he'll be going through chemotherapy starting Friday. I want you to know that I'm thinking about you constantly in hopes that you get through this with flying colours. I know that I have only communicated with your parents, but I want you to know that I will be here for you anytime, any day. I'm only three months ahead of you in the journey to beat this disease, so I can still vividly remember everything you are about to go through. It's going to be worse than hell at times, but if you need me, even just to talk about your symptoms I'll be here for you.

FYI - Young Adam's parents have followed my example, and have started their own website. I will link it to my site if I get permission from the family to do so. Once I've got the website linked, I hope that all of you will open your arms and sent some cheer his way like you sent me. I admit that it was exhausting checking my email at times, but all the emails I got helped significantly in my recovery and morale while I was hospitalized.

Adam gets admitted tomorrow, most likely at the same time my line gets taken out of me. I'd go on about my nervousness with my central line removal, but there is a young man out there in Calgary somewhere that's got more important things to worry about. I remember how nervous I felt when chemotherapy first started and I feel embarrassed to whine and complain about a little procedure while I know what he prepares for a month from hell. At least it sounds like he's got a wicked entertainment system that can play video games and television at the same time. I highly suggest Mario Sunshine as a time waster. With my High school friend Pete Rainford giving you hints, you'll beat the game in no time.

You know what Adam? I think there are a lot of things you'll be BEATING in the near future. Kick some ass my young friend, kick a whole lot of ass.

Day +87 Bone Marrow Biopsy...Again

2005-02-05T23:36:00.000-08:00

I've been a bit tardy with my latest entry so here it goes. I'm recovering from my bone marrow biopsy nicely. I find that walking helps so I've been taking the dogs to the dog park a lot in between vomiting sessions. Yes, I still have that alloying problem of morning sickness. The doctors told me to watch it and call them if it gets worse. Oh good, I get to enjoy a morning and afternoon of nausea for who knows how long. I puked today and it was "unpleasant" to say the least. I figured I was finally over the worst stuff this morning so I heated up a Jamaican patty with a side order of HP sauce and chowed down. Within seconds I was up to a 9 out of 10 on the nausea scale. A 9 by the way means that you've got 10 seconds to find a toilet or pail, but you really don't have a choice anymore as to whether or not you're going to puke. It's happening, so you might as well get comfortable, grab a pillow for your knees, and settle in front of the nearest toilet. For some reason, after I puked I was able to eat the other Jamaican patty, and a Rolo ice-cream cone with no problems whatsoever.

Here's the part that I don't get about vomiting. Once you're done, you can eat anything and get away with it. I could be so nauseous that I can't stand, but after I threw up, I could enter a chicken wing eating contest and most likely win. What is it about vomiting that turns off the nausea effect in the human body? I've puked enough in the past 3 months to write a paper on the subject, but I still have no way of telling why I feel so good after I puke. One of my friends suggested that my head cold may be causing my Estuation tubes to block up, thus throwing off my sense of balance, thus causing nausea, thus causing vomiting. However, this still does not explain the fact that I feel fine at night. If my tubes are blocked and causing me to be nauseous, why aren't they bothering me at night?

Anyway, enough of the puking talk, lets move on to the bone marrow biopsy. Once again it hurt like hell since the doctor needed three tries to penetrate the bone marrow. I guess my powerlifting bones are still intact. On the third try he broke into my hip bone and the pain I experienced was a shocker. For some reason, this biopsy hurt much worse than any I can remember. The marrow extraction happened with an equal amount of pain that I was slightly unprepared for. It actually made me jump!!! The entry wound is healing nicely, and I am only slightly limping as of tonight. I blew a lot of blood vessels in and around my eyes due to the puking but other than that I feel pretty good.

I have to go back to the puking subject for one more issue I have with the whole process. I have so many blown blood vessels in and around my eyes that I look like my wife beat me up. It's a lot of hard work for me and I don't understand how babies do it so effortlessly. I got puked on twice yesterday and both times I felt that the baby in question was not bothered in the slightest before, during and after the puking. How is it that I blow more blood vessels in my eyes puking than I ever do powerlifting 600 pounds, and a baby can smile, puke, and then go back to smiling as if nothing ever happened? That's one ability I'm sad that I lost along the road of life.

Lets get away from puking permanently and talk about the website for a paragraph. I'm starting to get pictures of the babies on CD so I will load the site up with some of the cute ones in the next few days. We had a professional photographer come to our house with her lights and digital camera so any day now a CD shaped package should be in our mailbox. We've used her services before and she rocks. I can't promise a date for the professional pictures, but by Monday I should have some new stuff to help you make it through a Monday morning.

Here's an interesting note. I have a site meter installed on my site and it looks like I get three times as many hits on the site from 8-5 Monday to Friday. This means that most of you are checking this at work and causing your productivity to fall at your respective place of employment. All I have to say is...well, I really don't care when you read this, I'm just happy that this diary is still entertaining people. If I know there's an audience out there, I feel a little obligated to write in here. It helps me deal with life, and I'm creating one hell of a historical record that I can read later in life. Thanks everyone, you really are a big part of my healing process.

Well, that's about it. It's close to bedtime and the twins are fussy tonight. Caity is doing great by herself right now, but I'm going to give her a hand getting them to bed. I don't really feel up to doing much in the daytime, but I'm actually starting to enjoy the whole infant thing so I like to help at night when my energy levels are better and there is no chance of hurling vomit at my own babies. Although it would be poetic justice if I did, since they've puked on me enough times.

Goodnight

Day +84 - Is it OK to Hate Accounting?

2005-02-02T23:30:00.000-08:00

Well, I haven't written in a while because I think I've got a sinus cold. It's been doing some pretty nasty things to me since the last time I wrote anything like making me feel like I was back in chemotherapy. I've been puking, and generally feeling like shit for the past 3 days, but luckily no fever or rashes, so the doctor's aren't worried. I'm feeling a bit better tonight and I took a Tylenol Cold and Sinus, so now I'm just waiting for the kids to go to sleep. The weird thing about this sinus cold is that the symptoms change every day. Sometimes it's nausea, sometimes it's a headache. I know I'm not supposed to think that it might be Graft vs Host, but it's hard not to think the worst when you're not feeling well. Lance Armstrong said once that everytime he got sick just after his chemotherapy, he would worry about the cancer coming back. I'm a bit worried as well, but I've got my bone marrow biopsy in two days so I'll know for sure in just a few days how good (or bad) the prognosis really is.

Other than that, I'm stuck in a time loop. You know what I'm talking about. It's every science fiction TV show's favorite plot line. It's where the same day happens over and over again. The babies are finally starting to get the routine of the house and I think the routine is what's causing me to go stir crazy. I need to start my course sometime soon, but I took a flip through the textbook and it's written like a third rate college textbook. Oh, and you'll be glad to know that the online multiple choice questions I have to answer are not time limited, and in the exact order of the textbook, so I can simply flip through the textbook at my leisure and guarantee myself 100% on the online portion of my class. I love classes like this because they really help me stretch my mind (whatever). To make matters worse, the subject is managerial accounting, which is about as exciting as it sounds. It's an interesting life I live. I enjoy my job, yet I clearly have a burning hatred for the subject I have to learn. The good news is that I'm more than halfway done my prerequisite courses for my CMA designation. I'm hoping I can put a dent in the last remaining courses before I go back to work. I figure that I can sit around and read a textbook just as easily as I can sit around and watch TV. Sure, I may still wake up at noon and feel like shit until about 7pm but I can read. I know I'm not in any condition to return to work (unless they allow me to work a 2 hour day) but hopefully I'll be able to come back to work a little more educated and more mentally ready to jump back into the rat race.

That's about it for tonight. It was a whole lot of nothing, but at least it was something.

Day +78 Roasting Chestnuts

2005-01-27T23:28:00.000-08:00

NEW Letter to Donor OLD Letter to Donor

Surprise, surprise here we sit again in the pitch black living room of my home with nothing but the glow of the laptop to keep us warm. Well, I should say hot because this monster puts out a hell of a lot of heat. I learned my lesson though from a few nights ago and am now wearing pants to type this. They should really put a warning label on laptops.

"WARNING - OPERATING THIS MACHINE IN THE ABSENCE OF PANTS CAN RESULT IN EXTREME HEATING OF THE GENITALS AND THIGHS"

Don't worry people, I was wearing shorts last time. I still got bloody hot, and I think I singed some thigh hair.

So, unless they didn't turn off their computer tonight, I'm joined at this ungodly hour by Amy and/or Ryan. Geez guys, go to bed already. Even my kids are asleep, which is getting harder and harder to accomplish at a decent hour these days. It looks like the twins are night owls just like their old man. I'm actually surprised that Caity has adapted so well. It used to be hard to keep her awake past 10pm on a Saturday night, and now she's outlasting me. Well, not that beating me up is a hard thing to do. I'm so weak compared to when I was powerlifting it's pathetic. I know a lot of people say that I look normal, but when you're used to squatting close to 600 pounds, being "normal" is not a positive thing.

Like I've said before, the only tangible thing stopping me from getting back to the weights is this stupid central line. I grow more and more weary of it as life goes on. It seems to be the one remaining roadblock to my rehabilitation. I'm not saying that I'm going to be lifting 600 pounds again any time soon, but I know my body and my mind, and I will not be happy until I'm throwing around some iron. I miss the gym so much, and it's hard to have this thing sticking out of me, reminding me that I'm not allowed to lift.

Now, my problem with the central line right now is this. I have to go into the hospital once a week to have the damn thing flushed. 9 times out of ten, that's the only reason I needed to be there in the first place. I've received fluid a couple of times, and immuno-globulin two or three weeks ago, but I haven't used it enough to warrant leaving it in. I realize that if anything were to go wrong, my central line would let them administer drugs much quicker than a regular I.V. but I'm starting to be of the mindset that the central line has served it's usefulness and needs to go....NOW. Of course, I'm not going to get my wish. I'm pretty sure that Dr. Chaudry wants to wait until after the results from the bone marrow biopsy come back before he pulls the thing out of me.

Enough of the central line, I'm really up because I was typing another letter to my donor. I still haven't sent the last one yet, so I'm printing them both off and giving them to Blood Services at my appointment today. It was interesting to try and find my first letter to my donor in my journal. It took me a while, but I got to revisit a few days in the life of Unit 57 while I was searching. I was a real big mess back then wasn't I? You might not notice it, but I can feel the difference in my writing styles from back then to now. Before, I was happy to make it through a single day and it came through in my entries. Now, I'm more cynical, and I've got more things to complain about. I probably don't have more things to complain about, I probably was so glad to be alive that complaining didn't seem right some how.

Adam in the hospital "Life is good, life is great, I'm so happy to be alive"

Adam now "Fuck this is taking forever, why is this taking so fucking long, I want my old fucking life back"

Sorry for the swearing but that's how my inner voice talks. I've discussed the possibility of toning the swearing down with my brain, but it doesn't seem to work. That's probably why you'll see the occasional swear word in here. If I were dictating this, we'd be much more kid friendly, but as it stands I type without moving my lips so you're going to have to deal with the swearing. I actually think that my inner voice is a reincarnation of Sam Kinnison. God how his material tainted me at summer camp. Teenage male camp counselors and bootleg copies of Andrew Dice Clay and Sam Kinnison are what caused the pirate language that came out of my mouth during, and after summer camp. Mom always wondered where I learned most of my swearing repertoire. And nursery rhymes are forever tarnished thanks to Mr. Clay.

I'll never be able to repeat "Old Mother Hubbard" without hearing the altered lyrics in my head (and maybe smiling and giggling to myself a bit). As a matter of fact, I don't know if I even know the real words to "Old Mother Hubbard". Don't bother emailing me with the real words, as I like my version better.

That's about it for me folks. Let's take a moment to remember those who made summer camp so memorable. May they rest in peace

Goodnight Everyone

P.S. I know that Andrew Dice Clay isn't dead, but his career is, so it's OK to speak of him in the past tense.....OHHHHHHHH

P.P.S. I happen to love the movie "The Adventures of Ford Fairlane". Say anything bad about it and the koala gets it!!!!

Day +76 Back to School

2005-01-25T23:27:00.000-08:00

Caity's journal entry is up, and that's about all I have to say. Read it for yourself.

Other than that it's been a boring predictable day. The chores were done, the dogs were walked. Same old day, just like yesterday. God I'm bored.

I signed up for one accounting course from Athabasca University. I've taken the subject before but it's been so long since I covered Managerial Accounting that I decided to take it over again. That, and I don't recall getting a great mark in Managerial Accounting in university. That was during my 3rd year "Get me the fuck out of this hell hole" phase of university. It was a time in my life when I valued a weekly paycheck over a university education. I worked more than I should have and my marks suffered. But that's another online journal topic that is long past it's shelf life.

So, we'll see how I do with the one course. Athabasca has some pretty cool options regarding deferred exams and extended time to complete courses, and the nice lady in customer service didn't think I would have any problems stretching out deadlines if I found that it was too much to handle. You get away with a lot when you throw around the word "Cancer" in everyday conversation. The only people it doesn't work on are bitchy female cops who stop you for speeding on the way home to throw up. Yes, that happened 2 weeks ago, and yes, I'm still bitter.

I'm going to bed. I'm tired enough that I might not need a sleeping pill tonight, but you never know. I don't like taking sleeping pills because I find that I don't get as restfull a sleep, and I don't dream as well. Plus, I find that it's harder to wake up in the morning after taking a sleeping pill. I can live with sleeping untill 11am, but when your first look at the clock tells you it's time to start thinking about what you want for dinner, there becomes a problem. Caity lets me sleep as much as I need, but it's really hard to get things done when you find yourself eating breakfast at 3:pm.

Anyway, goodnight.

Day +74 Insomnia

2005-01-23T23:25:00.000-08:00

It's insomnia time again, and while I wait for a sleeping pill to kick in, I'm going to unload some emotional issues. This may get weirder as the sleeping pill starts working, but bear with me.

I've got hair. It's coming in everywhere. You can actually see the change in my scalp colour as the hair starts to come in on my head. I've also got this fine baby hair that Caity and I just noticed tonight that appears to be all over my body. My moustache hairs are incredibly dark, and it's starting to look like I'm growing a really bad moustache if I don't shave for more than 24 hours. In fact, there is a colour change in the skin under my nose due to the darkness of my moustache hairs, so it always looks like I've got the makings of a really bad "1970's porn stache". Oddly enough, with the "porn stache" growing the way it is, you'd think I'd have SOME hair growth down below the belt.

Now I know I shouldn't be complaining about hair growth right now. Most people in my situation would love to see progress like this. All I can say right now is that it's uncomfortable. The hair folicles on my head and face are so used to being hairless, that the introduction of new hairs is actually a bit uncomfortable. My face and scalp feel like they are being stretched by all the new hair coming out of the skin. With the extra hair comes increased sensations, and my new head hair is tickling me when I put my head on my pillow at night. I'm getting the good old ingrown hairs on my neck from shaving too much, and I'm seriously considering getting laser treatment to permanently remove my beard and moustache hair when I get better. I've actually toyed with the notion of staying bald, but it's getting toughter and toughter to shave my head with the increase in new hair. It's not emotionally tough, it's just that the razor is having to cut more hair, so it doesn't slide across the top of the head like it used to. To all the ladies out there, shaving your head is kind of like shaving your underarms. Hair goes every direction, so you've got to shave up, than down, then change the angle and shave again. That's right, my head is exactly like one big armpit. How's that for a flattering analogy.

So I'm fighting with the notion of having hair again, and I'm getting a little nervous about February. February 3rd is my bone marrow biopsy date. They've got to go into my hip again with the big Fucking needle to get some samples. We find out how the transplaqnt really did at that point, but I've been told that Chronic Myeloid Leukemia likes to hang around for months if it wants. I'm not sure how anything could survive the shit they've put into me, but for some reason, CML seems to be the most stubborn of all the Leukemias (so I'm told by Dr. Chaudry). The bone marrow biopsy will however determine if I can come off a lot of drugs and get this central line out of me.

By the way, if those of you who have had a central line wouldn't mind emailing me with exactly how they take it out of me, I would be most appreciated. I keep seeing some masked Doctor standing over me assuming the standard "starting the lawn mower" position and just giving a good heave on the end of my line. That might work for some central lines I guess, but mine is tunneled under a good 4 inches of skin, and there's some kind of locking system that my tissues have know doubt grown around. Have you ever seen the movie Dune? Well, for those of you who haven't, I'll sum up for you. There's an evil Baron and he likes to put heart plugs in all of his slaves. A heart plug is basically a cork for the aorta. There is a pull tab placed on the exterior of the skin, and if the Baron wants to see you die, he simply pulls the tab, and your heart pumps it's contents all over the place in a spectactular mess. That's about what I'm expecting when it comes to the line removal. I know I'm being melodramatic, but I'm up at 3:21 am and I've got a little blue sleeping pill working it's way through my system, so let's have a little slack here ok?

The other issue I'm dealing with is the whole 30th birthday issue. I am on the fence and I'm not sure what to do. 30 is a big deal for most people. It just so happens that my 30th birthday is 3 days away from my 100th day post transplant. The 100th day post is a really big deal for Bone Marrow Transplant patients because that means that it's more than likely that you've gone through the worst and aren't likely to die anytime soon. At least that's what the statistics say. So February is a very big deal for me, and I thought that I should celebrate with a party.

Here's the problem.

I'm still a little afraid of crowds. I realized this when Shannon came over to watch a movie. She brought Presley, who is a bit more than a year old and the stereotypical germ factory that keeps young moms and day care workers from enjoying an illness-free life. I found myself pushing him away when all he wanted was a hug. I guess I'm still uncomfortable about being around people or high-risk persons. Christmas was a scary time for me, and I'm not sure how many people really knew how uncomfortable I was being in a crowded room during that time. I'm getting much better, but my reaction to Presley showed me that I'm still a little afraid of the scary bugs that are out there.

So my dilema is this. I'm facing 2 events in my life that most people would celebrate, and I want to enjoy this time with my friends and family, but I'm nervous about having a party. I also find life to be rather tiring on a normal day, I'm not sure if I've got the energy to host a big bash. On the other hand, my mixer has new beaters in it finally, and I find cooking very theraputic, so a big party at my house would be great. I've got a recipe book full of nothing but appetizers that has not been used to it's full potential, and I think I would have a blast making tasty treats for all my friends and family.

You know what, SCREW IT. If I can eat a 7-11 hotdog, I can have a big freaking party. A HUGE PARTY!!! One condition though. I don't want any presents. This is a celebration of life, and I don't want to lose sight of what I'm really celebrating here. I know some people can't resist buying a little something like a card, but it would mean more to me if you avoided the whole card issue in the first place. I never quite understood why they were so damned important to give to people, and I can't see why we as a society keep giving Hallmark a reason to exist. If you want to say Happy Birthday, come up to me and say Happy Birthday, it's as simple as that. Besides, like I've said before, Hallmark has yet to come up with a decent card that says "Congrats on going through Hell and Back".

So, to sum up, party YES, presents and cards NO, date and time?

I'll tell you tomorrow.

Day +73

2005-01-22T23:24:00.000-08:00

God I feel like shit today. Yesterday was the first day of the lowered Prednesone dosage (down to 20 from 30) and all of my energy is gone. I hurt all over and I've got a hell of a headache. This is my body's friendly way of saying it's not happy with the lowered dose of steroids. I'm actually quite astonished by how much I can be affected by a difference in 10mg of a drug. As usual, the lowered steroid dosage makes me pee like a racehorse, and I was up 4 or 5 times last night. I officially have no water left in me. That's probably where the headache is coming from.

Never fear my faithful readers, this to shall pass. It usually takes a day or two to adjust to the new steroid dose. We'll do this same dance next week, and then again the week after. For those with poor math skills, that means that I should be off the Prednesone by February 3rd, unless they've got a different plan for the last 10 mg. With this last drop, Caity says she can see the real me coming back. I have to admit, I'm feeling more and more like the old me as time goes on. I've thrown out the rage'o'meter because there's been no rage. There's just been a whole lot of tired. I get 12 hours of sleep a night thanks to the Supermom, and I still feel like shit until about 5pm.

As the drugs go down, I think my brain is coming back. I'm feeling really non-stimulated intellectually right now, and I need something to do about it. I was hesitant to take some more of my accounting courses, because I was finding that I did not have the brain functions to concentrate on making dinner, let alone a professional accounting course. I'm still stupid a lot of the time, but I'd really like to start getting back to my life.

You know, I really am blessed right now. Caity and I have raised ourselves a neat little family here. I spent the first hour of m day this morning holding Kayla, while Caity sat beside my with Ara. I was petting Newton (our fat cat) while Bruno (Newton's smaller brother) curled himself up at Caity's feet. Both dogs were on their beds on the floor beside us, and the sun was shining. It was one of those moments when you look around and say, "you know what, I've got a pretty good life". Cancer has given me this time with my kids and today I'm finding it hard to not enjoy the fact that I'm on disability. I've gotten to know the twins in a way that most fathers don't. Don't get me wrong, I would never go through chemo again even if it meant a whole year off work with full pay, but it has had some perks.

Well, that's about it for me today. I do have one other note I want to add before I go. Watch the new Battlestar Galactica series on the Space channel. I was a huge fan of the original series, and they've done an amazing job with the new one. It's like what Tim Burton did for the first Batman movie. It's dark, moody, and the camera shots are amazing. I admit that I love my TV viewing and I watch more than I should, but I would give up all other TV to watch only this series for the rest of my life. Well, the new Battlestar Galactica series, and classic Star Trek reruns......and everything on FoodTV but that's all!!!!

Day +71 Mobile Blogging and Greek Food

2005-01-20T23:22:00.000-08:00

Today we're coming to you from the Tom Baker Bone Marrow Transplant Unit, thanks to the power of laptop computing. I usually end up sleeping when I'm here, but I've always wanted to capture the feelings that I have when I go to these appointments.

The first thing I need to talk about is the way the Foothills hospital makes me feel when I see it. I feel like I'm visiting the World Trade Centre site when I first see the Foothills hospital. It sounds bizarre, but to me it makes sense. I went into the foothills a strong, "healthy" person and all that is left is the rubble left from the assault on my body. The hospital is a reminder of who I used to be, and just seeing the building makes me a bit queasy.

Now, the hard part is when I walk into the building. The feelings I have outside the building change completely when I'm here in the Bone Marrow Transplant Unit. I feel protected, safe, and in good hands. I think just knowing that I'm being examined by the best is comforting and that's why I usually get the best sleeps here. I'm not sleeping today, however but nothing would give me a greater pleasure than to crash on this uncomfortable bed and let the sound of the ventilation system put me to sleep.

I've got to talk about the nurses down here before I continue. I know I've said that the nurses on Unit 57 were the best in the world. Well, spending time in the Bone Marrow Transplant clinic has shown me that the superior quality of nursing in this hospital is not limited to Unit 57. These guys rock down here as well.

That being said, lets get to the actual procedures that happen to me when I'm here. I get directed to a bed and sit there until a nurse comes by to assess me and draw blood. She checks to make sure I don't completely suck at changing my own central line dressings, and she draws blood and flushes my lines to make sure the central line is still working. After that, we pull out my binder (and yes it's as thick as a 3 inch binder now) and go through all the problems of the past to make sure they are being or have been treated. They have this huge checklist that they go through that has every conceivable health problem known to man. We go down that list which takes a few minutes, but I'm glad they are so thorough in their weekly investigation. Us Bone Marrow patients don't have such a great memory sometimes, and it helps to have such an extensive list to check off so I don't end up at home saying "Shit, I forgot to tell them about my toes falling off last night".

After the checkup, comes the waiting. We wait for the doctor to come around and see us. This usually means a wait of over two hours. I would normally have a bit of a problem with this, but then again, it's not that bad if you've got something to do. Besides, the blood tests need to come back before the Doctor's can do anything, and the people who work in the lab here probably see more blood in one day than a slaughterhouse, so I'm quite happy that it only takes 2 hours.

Well, we're in the waiting period right now, so I'm going to save this, and play some Diablo II. It's an older game, but really worth picking up on the discount rack. I'll pick this entry up after I've seen the doctor.

Back again. The doctor was kind enough to drop my Cyclosporin to 150 from 200 twice a day. He also dropped my Prednesone by 10mg instead of 5mg. Tonight and tomorrow will be hard as my body adjusts to the lower dosages, but the good news is that those are the two drugs causing most of the side effects. Big drops in both mean that life should get better. They've scheduled a bone marrow biopsy for the 3rd of February. No word yet on when the line can come out. Dr Chaudry wants to wait until he sees the results of the biopsy before he'll "pull the plug" so to speak.

So now I sit in the Foothills pharmacy, typing away as a severely over-worked pharmacy staff run around trying to get everything for everybody. There are shopping bags full of medications to be picked up by poor bastards like me. I would estimate that there are about 50 full-size paper shopping bags full of drugs behind the counter, and they were most likely put there today. Everyone is polite and courteous, but you can tell that the pharmacy is in desperate need of more space and personnel. Sitting in the pharmacy gives me a chance to observe everyone who comes in. It's a new hobby of mine, since I spend one day a week at the Tom Baker, and until we got the laptop, I had nothing to do but stare at people.

The pharmacy is in the Foothills Hospital side, and there is a great difference in the atmospheres of the Foothills side, compared to the Tom Baker Cancer Centre side. The Foothills is much more lively, and seems to be brimming with life. People are pushing their way through others to get to their appointments, others are standing in lines getting frustrated at the long wait and bitching about how they need to overhaul the health care system. Over at the Tom Baker side, there are no lines, no one is pushing, no one is rushing to an appointment. The patients are running on autopilot, and the visitors are feeling a mixture of sadness and joy. They are sad for their friend/relative/spouse/child, but they are secretly grateful that they don't have cancer.

I forgot to make a journal entry regarding Tuesday's charity dinner at Mykonos. Great food, great people, and I got to meet the owners son who is one month or so ahead of my in the recovery process from a Bone Marrow Transplant. We actually met once before on the day that I was discharged. We actually met right here in the pharmacy as we were both waiting for the over-worked pharmacy to fill our mighty prescriptions. He's the first person I've met that knows how I feel, and I guess I was expecting the two of us to embrace, and be best buddies instantly. We have so much in common after all. I'm actually finding that I want no contact with anyone who is going through what I am. I guess I thought that after I got out of the hospital there would be a person to greet me at my house with a membership badge and a secret handshake. I was part of the Cancer survivor's club. Well, the club doesn't exist, and I think that some cancer survivors feel the same way and just want to stop talking about cancer and get on with their life. I know there are people who feel differently about this than I do, but I just don't want to be reminded about my cancer right now. I know that I flip-flop on this issue so it might be better to ignore everything I just typed. I guess wanting to get back to the gym, and get back to work and get back to being normal.

I've got my drugs now. I've moved rooms as well. I'm now sitting in the "pool room". It's actually the connecting tube between the Tom Baker and the Foothills. The reason I call it the pool room is because the walls are tiled in dark blue, and the floor has that high-school pool floor tiled look. There's a big fan somewhere around here that adds to the atmosphere, so whenever I walk through here I feel like someone should be yelling at me to do 4 more lengths of backstroke.

Well, I hope you enjoyed your tour of the Foothills/Tom Baker Cancer Centre. I've been here for 4 hours now and the total trip[ time away from Caity and the twins is about 6 hours when you factor in drive times. Week in and week out the day long wait gets a little tiring, but I'm not going to complain in the slightest. These guys and gals saved my life, and I think that's worth the wait.

Day +68

2005-01-17T23:21:00.000-08:00

Well, we're typing this on the NEW COMPUTER!!!!! I'm sitting in my Lazy-Boy, with no wires, no big monitor. Just me, and a laptop. I can now update as much as I want and look after the kids (sort of) at the same time. I really have nothing to say about anything else, I'm just happy that I can sit in my living room and do this. It's not very nice in our unfinished basement and I think that's why I don't update daily.

Actually, I do have medical info to report. The nausea is gone now that I'm back on the Nabalone. No rage to report despite being left with the twins this afternoon, and the twins and my niece tonight. It's as if the last drop in Prednesone was the one that crossed the border between "rage" and "no rage". I've been rather calm lately, and it's a nice change of pace.

It's also nice getting visitors. We seem to be getting the full family rotation as we had a visit from the Bregliano's yesterday, and the Cooper's (minus Troy) today. Troy finally drilled his Skull bowling ball today, and he was giving it it's first test run on the lanes tonight. I hope Eddie worked well for you Troy. We'll have to go out and play a game or two when I get this central line out so I can watch the skull take out some pins.

It's sad really when you think of it. A benign game like bowling is still bad for my health. It would be a different story if my central line was on the other side. As it stands, the right arm is temporarily out of commission with the central line in my chest. Large movements of my chest, shoulder, and arm can put stress on the central line and cause bleeding, clotting and overall bad stuff to happen so I'm staying away from straining the area as much as possible. Mark my words, as soon as this thing is out, I will be at the gym making up for lost time. Well, that may be a bit ambitious, but we're going to at least get the dust off of the home gym downstairs.

That's about it. We're trying a new baby technique tonight. If a baby cries, we stick a boob in it's mouth. It seems that the more people we talk to, the more stories we hear of fussy babies in the evening. We've been trying to calm them down with rocking, bouncing, and other soothing techniques. I'll let you know how it works. I think we're on feed #4 for the evening. That's about one every one and a half hours. They normally feed every four hours.

That's about it. Talk to you later

Day +64

2005-01-13T23:20:00.000-08:00

So, I've got to write this before I puke to retain all the frustration I've got right now. I ran out of my Nabilone(anti-nausea med) yesterday so I'm cold turkey as of this morning. I was at the Tom Baker for my weekly exam and I've been getting more and more pukey as the day goes on. The problem with all the puking I've done in the past 2 months is that I now need a certain level of nausea in order to puke. So, I'm driving home from the hospital and I'm counting the seconds until I can pray at the porcelain alter, and I hit a speed trap. The cop took forever, and I ended up getting charged $136.00 dollars for a 20 km/h speeding ticket. So now, I'm at home and the nausea is here but not high enough to warrant a puke. I'm still waiting to take my morning medication but I want to wait until I throw up before I do since I know that one of the medications makes me more nauseous. Wonderful.

On a side note, this goes out to the gentleman in the waiting room at the Tom Baker BMT clinic today wearing the hospital gown. It's a really good idea not to sit with your legs spread open while wearing a hospital gown in a waiting room full of people. I know I complained a couple weeks back about the Westminster Dog Show being on TV in the waiting room, but THAT was one dog I was not prepared to see today when I walked into the Tom Baker.

Oh, and another thing. I walked into the Tom Baker with NO RASH AGAIN!!!! I have been plagued by a misdiagnosis since I was admitted to Unit 57. I'm a pink blotchy boy normally, but the doctors have been convinced that I've had a rash for two months. Well, I made sure that the nurse wrote down that I had no rash so I had some ammunition when the doctor asked to see my rash. Well, the immuno-globulin that I got today is a blood product, and guess what happens to me after the immuno-globulin goes in? A RASH. And once the rash has fully manifested itself, who comes into my area? Dr. Chaudry. At least he didn't prescribe anything else for my rash like is the norm for my visits to the Tom Baker.

Today is officially day +64 for me. 64 days since my transplant. Wow huh? In another month, I'll have the central line out, and according to Doctor Chaudry, I'll most likely be switched to a long-term clinic with fewer visits per month. I guess they think I've gone through the worst of it and I now just need to put the time in to heal myself. It's neat to hear other people's perspectives as to my condition. My little air bubble that I had in my liver is called "that scary liver issue" by the doctor which leads me to believe that I was a lot worse than I may have known. All I remember is feeling bad, but if you listen to Caity and the doctors talk, you'd think I was on death's door for a while there. Hell, maybe I was, but at least I don't remember it. We're still waiting for Supermom Caity to do her infamous entry, but I can sum up what she would write if she had an entry.

"Hi, this is Caity, I thought my husband would die for about two weeks in November"

That's about the sum of what I think Caity would write. Maybe it's better that she not write an entry. I still haven't gone back and read my old entries. It's going to be neat to see my perspective on life back then when I finally get around to reading them.

It seems as if I'm not going to have any luck puking today so, I'm going to go smell some babies. They need a bath, and my increased sense of smell really reacts bad to stinky baby smell. There's nothing like diapers and sour milk combined to make one throw up. At least I'm better then that poor bastard that was in the next room at the Tom Baker. I could hear him and the nurse talking and I guess all the skin on the bottom of his feet has fallen off. That sounds horrible. I realize that I went through hell and back, but I hear stories everyday about cancer (and other) patients who have been through worse and continue to go through worse than I ever got. I hope that my journey with cancer is coming to an end, but I hope that I will be able to keep up my good attitude if we have to go to war again.

I still haven't heard from anybody how to make my flying pig fly on the main page. How about some help here?

Day +63

2005-01-12T23:19:00.000-08:00

I am having too much fun with this website. I'm starting to see the allure behind running a website now that I get to express a bit more of my personality to the world. Don't ask why I wanted a flying pig as a link, I just thought it was damn funny. Same goes with the links picture. How can anyone resist laughing at a picture of sausages when clicking on the links page. Oh well, I'm laughing anyway, and that's all that counts.

So I get my first transfusion tomorrow. The Tom Baker phoned me yesterday to tell me that they want to give me an infusion of immuno-globulen since mine are low. They say that this is normal and routine, but if anyone else knows any better please let me know. I'm not happy about receiving more fluid from a stranger, but I know that the Tom Baker tests everything before they use it. I'm not afraid of catching anything, I'm just still a bit creeped out by someone else's fluids floating around inside me.

It's been a pretty boring day other than that. It's -40 C with the wind chill so I'm not going out at all. Other than beating my mother-in-law Sandi at Scrabble, I've got nothing to brag about. I've done nothing but add pictures and content to the website. I'm going to keep playing around with it in the next few days so stay tuned for more pretty pictures and neat content. Oh, and don't forget to check out the Team in Training website. They're the ones who are raising 38,500 dollars for Leukemia research by running a marathon in Alaska. They're still taking donations so if you want to donate, contact Heather and Shelley at hlmc@telusplanet.net. My sister-in-law Shannon and possibly my brother are going to be running in the Alaska Mayor's Marathon in June with the Team in Training. I'm going to buy some roller blades and tie myself to Shannon when she runs just so she's got some challenge when running the marathon. Come on, who else is training for a marathon pushing a 80 pound running stroller up a hill in snow in the middle of winter? I'm going to be like that little person they put in the back of those long rowing boats that beats on the drum to keep the tempo. If Shannon is nice to me, I might be willing to carry the snacks for her. She needs to ask nicely though.

Talk to you tomorrow

Day +62

2005-01-11T23:17:00.001-08:00

Okay, we're back in action. Although in the last 3 hours this web page has moved computers, crashed 2 times, and disappeared completely for 15 minutes, I think I've got it working right.

So, lets get to the heart of the matter today. I'm a 7C right now, and I'm feeling a bit twitchy. I'm not raging any more now that I've learned that it's okay for a baby to cry. I've been told by more than one parent that putting a inconsolable baby down to cry herself out is a good thing sometimes. The two times I lost my cool, I was trying to make two babies stop crying at the same time. That's a hard task for anyone, let alone a steroid-influenced, cancer patient.

Caity has really stepped up to the plate since the Super Grandma team has gone home. She does the nighttime feeds by herself so that I can sleep, and in the morning she takes the babies downstairs and sleeps on the couch so that I can sleep in. Once again I find myself in a situation, where I am pissed that I'm too tired to help the way I want to, and someone else is picking up the slack for me. Every morning I wake up and feel like shit for not being able to get up in the middle of the night to help out.

Now, I must say that overall, I'm not enjoying the newborn baby experience that much. I still find a lot of the kids behaviors frustrating and irrational, and I long for the day when I can interact with them a lot more. We are getting smiles from the twins, but I'm looking for the ability to use sentences, the ability to walk, etc.etc. I love my babies with all of my heart, but I'm not enjoying the maintenance aspect of the twins. They take a lot of work, and a lot of time and if I had more energy, or patience, I'm sure I wouldn't mind so much. I still have hope for my abilities as a father as the toddler age looms closer and closer. I've always been great with the 2-11 kiddy crowd, and I know that I've got to put my time in now to fully appreciate when I've got 2 little girls climbing all over me in a couple of years. Those of you who know me as "Uncie Adam the world's funnest uncle" will have to take a back seat to my beautiful girls when they're your age. God that's going to be fun. This is how I see things in the future. Dad comes home from work and walks in the front door. He immediately gets bowled over by two dogs and two blonde haired beauties screaming DADDY!!!!! That's what gets me through the day. That's what I'm living for.

Caity and I made a trip downtown today to go to her place of employment for her yearly performance appraisal. She got 100% by the way. While she was in her meeting, I took the kids to my work and paid a visit. Once again, I have to say that it was good to be back in the office, but I was bagged after about half an hour. That was precisely when Ara decided it would be a good time to have a cry session. I found myself boarded up in one of Storm's kitchens, rocking a screaming baby trying to heat up frozen milk in the sink waiting for Caity to call on the cell. Oh, that reminds me.....

Caity and I went out and bought a cell phone. A nasty, disgusting tool of the yuppie that we swore we would never get if our lives depended on it. We got it for the ability to stay in contact if I was alone with the kids and Caity was out. She's still a little wary of leaving me alone with them due to the rage thing but with the cell phone, at least I'm able to call and get "talked down" from doing something stupid. It was also for the emergency situations on the road that we might find ourselves this winter. So with me feeling much calmer, and Caity feeling more comfortable leaving me alone, it looks like the cell phone will be a useful tool after all. I've caught myself finding excuses to use it for non-emergencies like twice tonight at the grocery store. God I'm a yuppie now!!!!!! At least I'm not sad enough to carry it around on my hip all the time....yet.

I've got one more thing that I need to get off my chest. A few people have commented that I shouldn't talk about my rage sessions in my journal entries. The main reason I've heard is that it can cast suspicion on me if anything were to happen to my babies. Having a web page that documents me flying off the handle is just what a court would need to make my life a living hell. I have one thing and one thing only to say to that.

How dare you.

I have become mad, yes. Madder than I've ever been before in my life? Yes. But I would never, ever allow myself to hurt my babies. This journal was meant to act as therapy for me, and a learning tool for those going through what I did. If I don't mention the anger, I am doing a great disservice to myself, and to those who read this. I hate to say it people, but the anger is a real issue that lots of people in my situation are dealing with. It is a side-effect of the drug therapy I am on, and it is not who I really am. It has taken me a long time to accept this, and I hope that others out there can accept this as well. Life is hard of a cancer patient, and anger is just one of the shitty things that we deal with.

This is who I am. I'm a guy struggling with the after effects of a bone marrow transplant. I'm hitting bumps in the road and I'm getting around them. If you want to keep a closer eye on me when I'm with my kids, fine. I can deal with that, it's a free country. You can do a lot of things in reaction to what I've written, just don't question the love I have for my kids. They're a pain in the ass sometimes, but they're mine and I wouldn't give them up if my life depended on it. Hell, I'm not even sure why they frustrate me, they haven't even started asking to borrow the car yet.

Okay. I've joked, I've aired some more dirty laundry, and I've possibly just helped a jury of my peers convict me at a future date. I've accomplished quite a lot today don't you think? Honestly, for those concerned, I don't believe the anger to be an issue anymore with the decreasing steroid dose I'm on. I just felt that it was important to write about it. I would like to offer strong caution to those of you on steroids out there. At high dosages (I started at 75mg of Prednesone, I'm at 35mg right now) and dosage changes you will need to deal with anger. If you get anything from this journal entry, please get it through your skull that this is a serious thing. I've been to a shrink, I've talked to the whole family about it, and I've got a network of people I can call if I find myself on the slippery slope of rage. I'm taking this shit seriously, and you should to.

That's it, I'm done preaching. Goodnight everyone.

Day +62 Technical Difficulties

2005-01-11T23:17:00.000-08:00

It looks like we lost a bit of info (a journal entry or two), but the website has been successfully moved over to my new website. I would have put up a few more entries, but we've had some computer problems at the Price household. My monitor blew up last night, and we've been trying to track down some pirated Microsoft software to run Microsoft Frontpage for my tired, tired computer. I'll put up another entry in a couple of hours, I just want to make sure I can publish this one before I risk losing a huge, emotional entry. Talk to you in a bit.

Day +57 Equal Share

2005-01-06T23:15:00.000-08:00

Well, we're all alone here now. The Supermom's have gone home and it's just
Caity and I. She's still fighting a cold, and I'm at about a 6C for today
(6 out of 10 in energy, C is for aggression level from A being Incredible
Hulk type stuff, and E being a Cheech and Chong movie). I've been cleaning
like a maniac for the past hour so there will be nothing left for Caity to
do tonight. I love her dearly, but when she cleans the house, I feel like I
should be helping. It doesn't matter if I've already had a huge, busy day,
it drives me nuts if she's cleaning and I'm not. I feel like I'm not
contributing, but she likes to clean during good TV times so I hope my
pre-cleaning will make the evening go more smoothly.

I must note however, that Caity has said on more than one occasion that she
knows that we both share the work in the house and she doesn't understand
why I get so guilty when she cleans. I don't know either, but I'm going to
be vacuuming the unfinished basement in about 10 minutes so there will be
NOTHING left to do for a couple of days. I want to sit naked in front of
the television, and watch trash TV for 2 days while cuddling my children. I
want to never see another television show shown on Home and Garden
Television again (sorry Mom). Likewise with any news show. I know I'm
supposed to be informed and all that, but I've got enough death and
destruction going on inside my body right now, I have no time for watching
the same Tsunami videos over and over again while people pretend their
presenting powerful journalism. I'm trying not to be a bastard here, but
while the Tsunami was a horrible thing, some of the parasite reporters out
there are treating this like 9/11 and the sideshow it became. I'm almost
surprised I haven't seen a 9/11 retrospective piece on the news in the last
month. What's wrong NBC, did you burn out all your video copies of the
towers falling down?

Ok, let's get back on track. Where was I? Oh yeah, naked in front of the
television. Don't worry, when I'm cuddling the babies, I'll put underwear
on. I guess the point of all this is I want the world to go away for a
couple of days. I don't have another appointment at the Tom Baker until
the 13th, and other than some small errands, Caity and I are free. No
Christmas parties, no big trips, just us, the kids, the dogs, the cats, and
a freezer full of M&M meat products with new Jamie Oliver cook wear to cook
it in.

Health wise, I'm making the leap again to drop the Nabilone as my
anti-nausea. I've got a neat little pill that I take 4 times a day now that
basically gives anything in the stomach a gentle push through the proper tube
before it becomes a nausea factor. I'm finding however, that the gentle
push is sometimes a bit more than gentle coming out the other end. I've got
about a 5 second head start right now before I'm on a toilet or, well you
know. The you know hasn't happened yet, but I'm glad that I've got a
bathroom on the main floor.

That's about it health wise. I'm looking into getting my own website, since
I'm more than capable of handling the publishing on my own. When I get my
own site, I'll get Jim to post a link on his page so I stop taking up all
the prime space on his photo website.

I'm off for today. Gotta clean the bathrooms.

Day +54

2005-01-03T23:13:00.000-08:00

I've been told that my entries have been too negative lately, and looking back, I guess they're right. Truth be told, I haven't been as bad as the past few entries would indicate, it just so happens that I use my emotions as a tool for writing these entries. If I'm pissed off, and the computer is free, everyone gets to read a pissed off entry. Well, we've come up with a new measuring system for my current state of mind. Here's how it works.

The system is a alpha-numeric system with the number representing my energy level from 1 to 10, and a letter from A to E representing my rage level. A is bad, E is good by the way. Today (or more specifically right now) is a 8D. Good energy, good rage factor, so generally I'm a pretty happy guy right now.

Oh, and thanks to everyone who emailed me with "Fatherly" advice. Special thanks to Rob and Kelly, Pete Rainford, Al Diebel, and Cherie Geering for the awesome emails that made me feel like I wasn't a monster or an outsider. I'm not a fan of cyber-emotions, but if it's the only tool I've got to thank each of you, consider yourself cyber-hugged. Oh, and I've got to put Shannon Cooper at the top of the list. You have a very powerful gift Shannon, and everytime we talk you make me feel great. Just stop phoning around dinnertime okay?

So, my mom is leaving in two days, so I should be writing a lot more after she goes home. The computer at my house is in the unfinished basement, and my mom has been sleeping down there. She's actually got a pretty good setup, but she goes to bed so early that when my night owl instincts take over and I want to write an entry, the computer is usually off limits since my mom is sleeping. I'm moving the computer up to the upstairs tomorrow, so that I will write more and not have to go downstairs into the cold, cold basement.

My new hair is coming along nicely, however, I wish the thirteen hairs on my chin would talk to the rest of my hair regarding growth rate. I've got a perpetual 12 year old boy mustache and goatee despite shaving every day, however my head hair is whispy and sparse. I'm happy to have hair since it gives me something to rub that's still polite to rub in public, but it would be nice to have more.

Well, I'm done here. I'm watching a CSI - Miami where there's a parent that might have tried to suffocate her child so I'm going to go away from the TV. It's hitting too close to home right now. I think I might just give up on CSI shows since last week was a CSI - Las Vegas about a guy with Leukemia. What's next, CSI a show about a couple who has twin babies? How about a show about a guy who works as an accountant in the Oil and Gas Industry? Give me a call if you need any production advice, I seem to be living bits of every show you make, so I might be able to help with the details.

Goodnight Everyone

Day +52 - Too Far Away

2005-01-01T23:08:00.000-08:00

I hope that every shower I take in the morning will wash away some of the anger and frustration I'm currently feeling. It feels like someone has stolen my life and replaced it with an existence that is not supposed to be mine. I can remember a time when I would wake up late on a Saturday and roll over to casually kiss my wife. It would then be a leisurely walk at the Southland dog park, some house stuff, and then Caity and I would stare at each other and figure out what the hell to do at night. I can remember a time when I was tired from the 5 am workouts, not the 4 am feedings. I remember a time when coming up to Canmore for 4 days was an exciting idea, not a stressful endeavor.

I know that that life is dead to me. I have new responsibilities and I have new limitations on myself, but for some reason I'm not dealing with it well this week. My short fuse is back and I'm worried about being with the babies due to my temper. I can't understand why life is so hard for me to deal with right now.

Let me paint a picture for you.

I'm in Canmore, and it's a beautiful snowy day. It's almost as beautiful as a painting outside. I have family all around me taking care of my babies, and I have absolutely no demands on my time right now. It's like the ideal vacation for some, but again I feel alone and isolated. All I can think about is how far away I am from the Tom Baker in case anything goes wrong. I want to close my eyes and curl up in my own bed, and shut the world out until all this silliness is behind me. And once again, I have to let everyone know that it's nobody's fault but mine. I'm stuck in my own brain, and I am making everyone around me miserable. I'm not being much of a husband to Caity, and I know that I'm not doing the kids justice with my temper. I'm snapping at my mom, and I'm not sure how I'm really interacting with everyone else.

I'm going to go out on a limb here and say that the mental part of cancer is much harder to deal with than the physical. If I go throw up right now, I'll feel much better physically, but my brain has no way to throw up. I'm mad at what life has thrown me and I have nothing to yell at. I'm still not able to work out so that throws away the only way I've ever found to burn off the aggression.

I've cooled off a bit after reading my entry. Everything I've written is still valid, but I'm a bit less wound up. Hair is still growing in so I'm happy about that. I'm going to go cuddle my babies and maybe repent for all the things I thought about doing to them at 4 in the morning.

Day +51 Happy New Year

2004-12-31T23:07:00.000-08:00

Happy New Year everyone.

And Happy New Hair to me. I've got the wispy new baby hair starting on my
head, so I'm taking that as a good sign. I can't remember if my last entry
was a happy one or a sad one so I'm going to sit on the fence for this one.
There's some sad, some happy, and some angry, so here comes the roller
coaster.

I've been riding an "almost" fever for half a day now and I'm scared that
I'm slipping into the Graft vs Host thing. I was doing so well, and then
this morning I woke up with a sore lymph node. I haven't really gotten off
the starting blocks today and it's already the new year in Ontario. It's
most likely just a little bug that I will fight away with my limping immune
system, but I can't help but think about another round in the hospital. It
really is hard to separate the logic from the irrationality of emotion. I'm
trying to be smart about this. I mean, I'm just tired, and my lymph node
doesn't hurt anymore, but I am having trouble not being panicky. How am I
going to go through life if I retreat into a bubble every time I get a
sniffle?

I'm starting to feel fragile as well. I can't really describe what changed
to cause big indestructible Adam into, nervous wreck in any public situation
with more than two people Adam. Caity and I have been living a life of
cancer and babies for so long that if you can't converse with us on those
two topics, you're screwed. Case in point, we had John, Jen, Amy and Ryan
over for chocolate covered bananas with sprinkles and I felt completely left
out of everything. I was nobody's fault, but I just felt like I was an
outsider that didn't quite fit it. When we talked about cancer I was fine.
When we talked about babies I was fine. But I don't have a life outside of
that and this was made very clear to me that night. I love all four of
those above -mentioned people, but I was unable to enjoy the night to the
fullest due to whatever this mental funk is. I really do have a full-time
job as a parent/cancer patient and it shows.

On a happier note, my babies are adorable. They're crying and generally
carrying on right now upstairs, but we're in Canmore, and the Supermom trio
is in full force, so I'm taking advantage of it. They seem to be changing
every day, and all the crying and bad sleep all gets forgotten when I get a
smile from one of them. There are times when I think about making a series
of videos for them in later life. Kind of like the movie "My Life" starring
Michael Keaton as a terminally ill cancer patient. Two problems, I don't
own a video camera, and I'm too lazy right now.

Speaking of cancer patients, Caity and I did a neat thing for Christmas. We
bought a TV/DVD combo, and some DVD's and donated them to the Tom Baker's
Unit 57. My brother threw in a Playstation 2 and the nurses put the entire
thing on a portable cart. It is Caity's and my desire to add to the cart
every little while, so that people who can't get out of bed in Unit 57 can
have something to do. If I had the money, I'd buy out the current TV
contract the Tom Baker has and give everyone free TV while they are there.
It cost me almost 300 dollars for one month of TV and phone in my hospital
room, and I think that is just highway robbery. Whoever runs the TV/phone
department, needs to pull their head out of their ass and realize that
cancer patients just might deserve a few breaks in life.

I think I need to go to my shrink. This whole journal thing is great, but
I'm really starting to feel myself fall in to an emotional pit and I want to
pull myself out before they need to throw me a rope. I've never been fond
of psychiatrists, but I think that I'm just going to have to go for it. I
t5hink if I was female, I wouldn't even be typing this. Why are males so
stubborn and stupid when it comes to doctors and hospitals? I've never had
anything but great care in the hospital, and the head shrinker isn't even
going to give me chemotherapy, so why am I nervous? Hell, all this is going
out on the internet to strangers and I'm sitting here concerned about
talking to someone who is under a legal obligation to keep everything I say
a secret. See, this is why I'm going nuts.

Ok, I'm done or tonight. Have a great new year everyone. Let's hope that
Caity and I never EVER have a year like this again.

Good Bye 2004. You gave me a lot to think about.

Day +42 Missing the Mary Jane

2004-12-22T23:04:00.000-08:00

Well, I feel like shit today. I'm off the Nabilone (marijuana derivative to
help with nausea) and my steroid dosage was dropped again. I feel like a
heroin addict coming down off a high. I'm really shaky, and my body can't
figure out whether to sweat profusely or shake in uncontrollable chills. I've
found that the only place I feel comfortable is in the shower lying in the
bath and letting the water hit me from above.

The appetite is down as well. My mom says I should not worry because I'm
starting to eat like a normal, inactive person. I did have some fresh
tomatoes with dinner today, but I had to wash them with dish soap to clean
the skin. I've never washed produce with dish soap before and I am positive
that the lemon fresh scent of Sunlight does not mix well with Sun dried
Tomato and Oregano salad dressing.

Another negative part of today was that Caity discovered that I'm not
actually growing hair. The stubble that I had on my head has started to
fall out with light rubbing so it looks like I'll be bald for a while. I
know I haven't expressed much of a concern for my hair, but it really is one
of the most visual signs that I'm sick. The only other part of me that I
hate to look at is the central line, but I've gotten used to that, and I
know that it'll be gone in a month. It's the hair that's bugging me, but
I've found that shampooing with a anti-dandruff shampoo helps a bit wit23 h the
humour aspect.

Today I'm done with feeling bad. I want it to end. I'm not having the fun
I used to and I'm finding that it's harder to smile and joke about what's
happening. I don't have the energy to take care of my own kids and I'm
tired of being tired. Sorry for the sourness of this entry, but today is
not a happy day, so this is what you get. If it weren't for the fact that
it was Christmas, I might consider going back to the hospital and sleeping
there. I have this worried feeling that something is not right, and I'm
just sitting here at home oblivious to the fact that I'm slowly dying and
the doctors at the Tom Baker could be doing something right now if I was
there.

Anyway, sorry again for the entry, but if I'm going to write about the good
times, I've got to write about the bad times. I think that I'm going to
give back the book Maureen (the shrink) gave me. The guy who wrote it
climbed Everest, then got Acute Myeloid Leukemia. That's one level higher
than I got, but the guy writes like every day was glorious. His wife cooked
all of his meals and spend 14 hours a day at the hospital. He also rode the
stationary bike at Unit 57 for hours and reading the book generally made me
feel like shit. I basically just lay there and typed in the hospital and
here is this guy riding and energetic, and happy. I don't want to be a
bastard here but after reading the first 50 pages about how positive and
happy and strong this guy is I want in my heart to yell out a huge "FUCK
YOU" for making me feel like a second class cancer patient. I guess I'll
come back to the book in a while, but it was not doing much for my morale.
He is a very good writer though, and his wife wrote every second chapter so
I guess that's a slight fuck you to Caity and her ever looming and still
unpresent journal entry. Well, we do have twins and mountain boy just had
his wife, and I would never, ever, question Caity's dedication to her kids
and me. She is beyond any criticism, comment, or complaint in my eyes and I
would take her over any home cooked 14 hour day hospital visiting super
wife.

That's about as much negative energy as I'm willing to vent in one sitting so
I'm going to bed. I've been there most of the day, but it's time to take
the medications and hit the sack. I'm really fighting the urge to take a
Nabilone, but I will also never allow myself to bend to a craving.

Now that's a joke!!!!

Goodnight, and thanks. I feel a bit better getting that off my chest

Day +40 A Colony of Doctors

2004-12-20T23:02:00.000-08:00

Well, I just got back from my latest hospital visit and all is well. My
levels are holding and other than some low potassium levels I'm ok. I
actually got a good sleep at the hospital while the potassium was dripping
into me.

I noticed a neat relationship between ants and doctors. Please understand
that I hold no disrespect for any doctor I've ever met, I just happen to
notice that you act collectively like a ant farm.

Let me explain.

At first I'm sitting in a room by myself. After a short time a younger
doctor (scout ant) comes in, asks some questions and leaves. You wait for a
little while longer, and all of a sudden, doctors are coming out of the walls.
There is a steady stream of doctors entering the room who are most likely
following the scent trail left by the first scout doctor. Like ants, they
attack in groups so that even if you take out a few of them, there are more
to take their place. There are younger "worker doctors" flanking the
"soldier doctors" swarming around my room. They're up my shirt, in my ear,
up my nose. I'm surprised that I haven't been carried away yet since
doctors, like ants possess super strength. I'm sure there must be a "queen
doctor" living in the dark basement of the Foothills Hospital pumping out
worker doctors and such, but I'm not strong enough right now to go exploring
in the Foothills basement, and I don't think I would go unless I had one of
those exo-skeletons like Ripley had when she kicked the holy crap out of the
Queen Alien in the movie "Aliens".

I'm not sure if I'm done being silly, but I'm not done writing so lets
continue.

For those of you concerned about my lower GI tract, I have good news. The
pipes are working in perfect order now. We've survived dairy products,
fruit, and my homemade chili. I actually went and had a Wendy's Spicy
Chicken sandwich today. I'll keep you posted to see how long that one stays
in me. As for everything else, the insomnia is still around, but we've
switched up my anti-nausea meds, and lowered my steroid levels so that might
help.

I think that I'm starting to get used to the decreased energy. I was told
to expect a "mourning" period regarding my activity levels. I fought it for
a while, but I think that was making my short fuse shorter. I've seemed to
come to terms with the fact that I'm not going to be 100% for at least six
months, and I seem to enjoy the quieter times in life more. I love cuddling
my babies, and I find myself contemplating life and daydreaming about the
summer, my 30th birthday in February, Christmas, etc. I've been changed by
this experience, and I'm not sure what the final person will be like, but
I'm starting to get to know him, and he's not too bad. He seems to take
more pleasure in the simple things in life, and it's a refreshing way to
live, rather than bitching and whining about what you don't have, or how
life continues to deny me my motorcycle that I so obviously deserve.

While I'm thinking about it, I have some advice to future residents of Unit
57 in the Tom Baker Cancer Centre. Get yourself a cool necklace. Your
central line will need to be supported by a tie around your neck so there
is no pulling on the insertion point, but the Tom Baker gives you the
equivalent of a white shoelace that you safety pin your central line ports
to. This white shoelace will stick out of every shirt you own, and it looks
like it's from a hospital. I just got in the mail an awesome necklace made
by one of my best friends, Jen McAllister(Jen Morrison). It's a shell
necklace that has orange tinted shells. Orange by the way is the colour
that represents blood and bone cancer so the necklace is even more
meaningful. But I'm serious, if you've got a central line, get every bit of
medical junk off of there that you can. You'll feel so much better. It's
bad enough to look in the mirror every day and see the bald head, the skinny
legs, the sunken eyes, but you don't need a whole bunch of medical junk
hanging off your neck.

Oh, I remember what made me laugh in the Tom Baker today. I was walking out
of the bone marrow transplant department, and I had to walk by the waiting
room for the main ground floor area. Now, this is a big room, and at any
one time, there are about 30 people waiting. Well, the place was packed
today, and the one TV in the corner of the room had been turned to the
Westminster Dog Show or whatever that dog show is. Now, cancer patients
don't look like a very happy bunch, but you could tell that whoever had
changed the channel to the dog show was done and gone, and everyone else was
staring at the damn dog show simply because we've all read everything in the
waiting room. I felt so bad for everyone there, but at the same time,
nobody had the guts to stand up and change the channel. I find that TV's in
the Tom Baker are usually tuned to strange things. The CT Scan room usually
has the shopping channel, and I've seen the weather channel on more than
once in X-ray. I'm guessing it's a motivational thing for the patients.
They get so tired of the shit TV that they make a quicker recovery. I also
heard a rumor that "CODE MAUVE" is actually hospital code to warn hospital
staff of upcoming quality television programming about to appear on a public
TV so that they can change the channel to something more mind numbing.

So, just take this entry with a grain of salt if you find anything
insulting. I love the doctors, I love the Tom Baker, I just found today
rather like a Seinfeld episode. Weird observations about life were
everywhere. The Tom Baker really is a fantastic place, and I owe them
everything, but today was damn funny.

Oh, and if you drive a black Lexus, you're balding, and you like to have
full volume arguments on your cell phone headset as you burrow your way
through traffic on 16th Ave at stupid speeds let me give you some advice
about today.

I make YOU look unhealthy right now. You really need to relax.

Day +37 Steroids and Temper

2004-12-17T23:00:00.000-08:00

So I haven't written in a while and I figured that I'd talk about some
stuff. Life has been great the past week. I am slowly getting used to the
new habits of my daughters, and my energy seems to be holding in there. I
have to take a breather every once and a while after a big walk, but I
successfully did a light mountain hike (really light) with my daughter Ara
in a snuggly. The grand parents wouldn't let me go out without two ski
poles for support, but I did the whole walk.

For those of you who don't know, my sister-in-law Shannon will be running a
marathon in Anchorage Alaska in June to raise money for Leukemia research.
My journal caught the eye of one of the team's organizers, and she asked if
the team could run in my name.

Now, bear with me because this is a blatant cash grab here on my part for
what I believe to be a pretty good cause. The team's goal is to raise
39,000.00 for the Leukemia and Lymphoma Society. These 7 people are busting
their asses to help out strangers like me, and if you would like to provide
a donation to them in any form, please email them at this address.

hlmc@telusplanet.net

Their next events are a lottery featuring gifts and donations from various
Calgary businesses (gift certificates and prize donations are also greatly
appreciated), and a fund raising dinner at a Calgary restaurant called
Mykonos on January 18th. Dinner is 30 dollars per adult, and I'm going to
be there so why not come down for the evening. Give me or Shelley Herman
(the email address above) a buzz and we'll hook you up. Mykonos is a Greek
restaurant that kicks a whole bunch of ass so why not make the trip. If you
ask nicely, Caity and I might even bring the twins!!!!!

No joking aside, I've met two of the organizers of the marathon team and
they, like Mykonos kick a whole bunch of ass. I know that everyone out
there has a particular charitable organization that touches them
emotionally, and I am no different. That is why I will continue to mention
them in my web journal so get used to hearing about their progress.

Lets talk about energy now. For anyone going through what I went through,
be prepared for a huge boost in energy when the steroids kick in. The only
problem is that this is a false energy. It doesn't actually exist according
to the doctors at the Tom Baker, and I have to learn to stop before I get
too tired doing any one thing. It's hard to control your activity levels
when you spent the better part of November on your back. I just want to go,
go, go, but I'm still unprepared for how quickly and abruptly my body lets
me know that it's tired. I don't get tired slowly, it's more like a sudden,
abrupt stop in any energy output whatsoever. Follow that by periods of food
cravings that (I've been told) can be compared to a pregnant woman. Oh, and
don't forget the insomnia that we're currently experiencing, and you've got
the entire package.

sort of.

I've got one big problem that I'm having a bit of difficulty with. The
drugs I'm on are causing me to have the temper of a 2 year old. I've always
been a cool head, with the exception of sudden, abrupt pain like a stubbed
toe causing me to get pretty mad, pretty quick. I've found lately that
every annoyance is like a stubbed toe. The anger comes on so strong and
quick that it's sometimes all I can do to stop myself from punching a wall.
Caity and I talked about my rage relating to the kids, and I will admit that
I've had to put down a child and walk away for fear of doing something I'd
regret. You don't have to email me about that little bit, because it's the
last I'm going to talk about it. I am not happy about being called a
potential danger to my children by a team of doctors. I am also not happy
about Caity carrying around anti-psychotic pills in case I go off the deep
end. My levels of steroids were dropped on Monday, and I have noticed a
cooling off so to speak regarding the anger so I'm guessing that as the
steroids come down, my rage, and my false energy will dissipate. Besides,
Caity and I have re-discovered an old way to blow off steam, so I doubt
you'll be reading about me in another newspaper article about how I went
nuts and killed my whole family.

So that's it about the anger, agreed? I normally would open the floor to
any discussion, advice, help etc, but I really want to keep the historical
records of this part to a minimum. It's being dealt with, and I'm very
embarrassed about it so that's it.

Just so everyone knows, I had a great day today. In the past 24 hours I've
broken two major rules the Tom Baker gave me. The first one is my secret,
the second one I will share with you.

Caity and I had a date at one of our favorite restaurants, Chez Francois (Canmore).
They did our catering when we had our wedding and I am never disappointed
when I go there to eat. My god is the food good there. Anyway, I was told
to stay away from restaurants because I can't see if the food is being
prepared properly. Well, aside from a waiter with limited English who had
no idea what "immuno-suppressed" meant, the food and the dining experience
was one of the best I've had. We were also the only ones in the restaurant,
so contact with bugs and germs was at a minimum (5:00pm on a Thursday
afternoon, so the emptiness was no reflection on the quality of the food).
Aside from the physical enjoyment of eating, I think it was the first time I
had been out in public without worrying about germs. Caity and I had the
world to ourselves for two whole hours and for a brief period of time, I was
normal. I wasn't a new dad, I wasn't a cancer survivor, I was on a date
with the woman I love.

I have some other advice for anyone in my shoes. Get your ass back into as
many emotional relationships as possible. Allow yourself to cry at those
damn Canadian Tire Christmas commercials, get in an argument with someone
who pisses you off. Find whatever makes you blow emotionally and keep on
doing it. I think one of the side effects of cancer treatment is that you
retreat into yourself. I never realized it, but I was so into my own fight
that I turned off any other emotions. I'm letting myself cry, letting
myself laugh at anything that I find funny. Do whatever you want. If
you're embarrassed about doing something weird or silly think back to a time
when you were so sick, you didn't even notice a nurse prepping you for an
enema in the hospital. Then re-think why you aren't doing what you need to
do.

Now, if killing small puppies is your thing, I would suggest a different
hobby to let off steam. There are still some things in this world that do
not qualify for therapy and I figure that if chiropractic care is STILL not
fully covered by insurance or Blue Cross here in Alberta, puppy beating has a
long way to go before it hits the mainstream. All I'm saying is find what
works for you and find it quickly. I'm kicking myself for not doing it
sooner.

So, with insomnia still baring it's teeth I shall continue.

Actually, it's been a while since I checked out Rob Glatts's page so I'm off
to be the reader, not the writer. My next doctor's appointment is on
Monday, so I'll have another entry up by then. Oh, and Caity should have an
entry in here soon about her experiences with me in the hospital and
everything else. She's been promising to do this for a while, but her time
is rather limited so I'm not upset.

If there's anything that anyone wants to know, I'm taking requests now.
Since the medical info is slow now, I figure that I can open up the floor to
questions and that will give me the topic to write about. I've forgotten a
lot about what happened in the hospital, but I've got enough people out here
to fill in any blanks I can't remember. Don't feel shy about emailing if
you have a question, since I love to write in this thing. I'm just running
out of topics.

That's it. Remember, give Shelley an email if you can help out a great
cause. In any case, have a good night.

Day +31 Letter to My Donor

2004-12-11T22:59:00.000-08:00

>A letter to my donor.
>
> Hi There;

I wanted to wait to write you to make sure that I could write with
> happy news. So far, it looks like all of your hard work and pain are living
> within me quite successfully. I was amazed when I saw the amount of marrow
> you gave me. I've had a few bone marrow biopsies in my time, and I can't
> imagine how much that hurt to get all that marrow out of you.
>
> I really wish that I could convey how special your gift of bone marrow was
> to me. You really have no idea what kind of positive effect you have had on
> me and my family. I hope that one day, I will be able to provide more
> information regarding how great your gift is. But for right now, all I can
> say is that I'm doing great, and I have been discharged from the hospital
> and am living at home. I would love to say that life is returning to
> normal, but until the shock of being alive wears off, I think I will
> refrain from labeling anything as normal.
>
> I do have a strange question for you that I am hoping will make it past the
> bone marrow letter police; "do you enjoy fruit?" The reason that I ask, is
> I've always been a meat and potatoes kind of person, and all I can think
> about these days are fruits and vegetables, so I'm wondering if I've picked
> up on any of your eating habits. I'm not sure how legitimate the science is
> behind the effects of a bone marrow transplant on appetite and taste, but
> there has been a dramatic shift in my food preferences so I thought I'd ask.
>
> Anyway, I've got to go. Please keep in touch, as nothing would please me
> more than being able to one day travel to wherever you are and shake your
> hand. You've saved my life, and I want you to know that I am forever in
> your debt.

Day +31 There is no "I" in Team

2004-12-11T22:57:00.000-08:00

> So, here I am after what seems like a long absence from my journal. Life
> has been rolling along at a busy pace over here and it's taken me a while to
> get used to my new role as a parent again. It was quite intimidating to
> walk into my own house and witness the sheer mom perfection that was the
> team of Caity, Sandi (Caity's mom), and Elli (my mom). They were a well-oiled machine that was
> processing babies at an alarming rate and it was all I could do there for a
> while to sit back and watch the process. Sandi has gone home and it sounds
> like my mom is gone as of Jan 6th. I was a bit worried at first about
> being left with a strange wife and strange babies in a strange house, but
> now that I'm finding that my strength coming back, I'm not so worried
> anymore. I was really concerned that I would be baby #3 on Caity's care
> list so the fact that I'm getting stronger is a real positive impact on my
> mental state.
>
> I wrote a letter to my donor today. I'm not allowed to include any personal
> details so the letter is basically a "thanks for the bone marrow" type of
> thing. Hallmark was coming up short with the funny organ donor cards so I
> had to write my own. It's somewhere in or around this journal entry
> (wherever Jim puts it) so give it a look if you want. On the other hand, if you
> know of any male living in England, Scotland, or one of those Northern
> European countries who just gave bone marrow, pass along this website so
> that he can get a glimpse of how much he has impacted my life.
>
> Medically, I can't really complain about much. I'm still having a bit of
> trouble regulating my temperature at night time. Sandi said it sounded like
> early pregnancy or menopause, but combined with my weird food cravings, and
> increased sense of smell, the joke is that I'm pregnant. That wasn't bone
> marrow the put into me, it was eggs!!!! It's going to be like that scene
> from aliens all over again. OK, most likely not, but I don't remember much
> about what happened to me in the hospital.
>
> I had a talk with Caity a day ago. We really were not feeling like we were
> a team at all so we spent a few hours in the morning just talking. I guess
> there were days that I was in the hospital that I had a lot of people really
> scared. It's hard to really think about how sick I was. I remember not
> feeling well, but Caity has stories of me hallucinating in my hospital bed,
> and twitching and "dancing". She has promised to write an entry with some of
> her more memorable "Adam moments". Hell, up until yesterday, I've been
> yelling at the TV at Ralph Klein (Alberta's premier) about how his stupid
> stand on gay marriage will affect his election results. I found out last
> night that the election was over two weeks ago. I guess he already won the
> election. Congrats Ralphie.... Now how about pulling your head out of your
> ass and realizing that gay marriage is just as legit and should be embraced
> rather than shunned in today's society.
>
> Anyway, on another subject, Caity and I are finding "our team" again, and I no
> longer see her as just the mother of my children. I wish I could really
> explain how easy it is to get inside your own problems and forget about
> others. Caity was so busy with the kids and the house, and I was busy with
> my fight, and I think we forgot that we were husband and wife somewhere
> along the road.
> Well, we're back as a unit and I think that's helping the house more than
> anything. I really do still think that she's the most beautiful person I've
> ever met. I'm just glad I'm getting the chance to get to know her all over
> again.
>
> That's it for today folks. I've got a doctor's appointment on Monday, so
> that will be the next update. Have a great weekend, and if you happen to be
> weightlifting in Okotoks on Sunday morning, I'll see you there tomorrow.
> I'm just coming for a social visit, but I see myself as a blank canvas for
> Bruce to mold into a champion, so I want to make sure he's got all the
> information about me so that we can plan my return to action. I'm not
> allowed to lift anything anyway until my central line comes out so I'm
> still a month away from any weights.
>
> later.
>
>
>

Day +27 Bye Bye Unit 57

2004-12-07T22:56:00.000-08:00

Well, about 30 seconds ago I got the official discharge from the ward which
means that I'm now going to be driving into town everyday to get my meds and
vitals done at the outpatient ward, while spending all my other time at
home.

Right?

Wrong!!!!!!!

I'M TOO HEALTHY FOR THAT BABY!!!!!! I GOT BUMPED RIGHT OUT OF OUTPATIENT
CARE TO THE WEEKLY AND MONTHLY CARE STATUS!!!!! My next hospital visit is
on Thursday. That's right, I shocked the doctors so much with my recovery
that I skipped a grade so to speak. I drove myself to the hospital today,
and I even stopped by the office yesterday to see everyone.

I wish I could describe the love I feel when I walk into my office building.
Maybe it's because the first thing you see is Wendy's beaming smile.
After that, it's really hard to have a bad day. Anyway, I walked into the
office and everyone came out to see me. I picked up some news releases for
changes to the company, and had a great chat with everyone. I know people
out there are saying

"GEEZ ADAM, you've got a goldmine of time off to rest and recuperate and
the first thing you do no more than 10 minutes after they release you from
the hospital yesterday is to go to work"?

Well, yeah it is a bit creepy I guess, but my job is that important to me.
I love the people I work with, I love the people I work for and believe it
or not, I love accounting, and I've learned so much in the past couple
months working with Don. Just getting back into the building and walking
around the office brings a person back to the real world. It's been a while
since I was in the regular person's world, and being at the office yesterday
reminded me of one of the main reasons why I fought so hard to stay alive.

I definitely overdid things a bit yesterday, and paid for it with a nap and
a long sleep in my own bed last night. I think I'm still a little winded
from all the walking yesterday but I'm sure that will go away when my red
blood cells return to normal and I build up some bulk on my body.

Speaking of bulk, I have a pair of stretchy jeans that used to make my
power lifting ass look sooooooooo good. I've got them on and it looks like
I'm wearing painter pants. Such stupid, thin little legs I've got.

Well, since I'm off till Thursday, I will declare a brief rest in the
journals until then. I'm going to spend some time with my girls today, and
kick Caity and the Super-Super-Mom's out of the house for a while. I
declare it to be father-daughter day at the Price household.

Later

Day +25 - Home

2004-12-05T22:54:00.000-08:00

It figures. I'm in here on the verge of getting out and rejoining society,
and it looks like there's a new pill on the market to take over where my
poor little Gleevec failed me the first time. Oh well, I'm actually not mad
at all. I'm very happy to see such huge advances in cancer research and I'm
glad that Leukemia happens to be one of the cancers that they seem to be
blowing large holes in these days.

In fact, I would say that I have valued every day I've spent in here. I
would be far less of a man if I was still just taking a few pills and going
on with my day like a regular human being. I am not a regular human being.
I am a cancer survivor. I never wanted to use that term before since all I
was doing was taking a few pills a day. However, now I have been through a
round of chemo, I have spend over one month in a hospital bed, I have had to
deal with more vomiting and runny shit than most people do in a lifetime,
and I've got another six months of wondering if the procedure worked.

Today I feel I have earned the right to call myself a survivor.

Do you know in the movie the Princess Bride, when Weasley and Buttercup are
surrounded by Humperdink's men after they emerge from the fireswamp? Well,
Leukemia is my fireswamp. I've been through the chemo, I've been through a
lot, and the reason I call myself a survivor is that I KNOW I could do it
all over again if I had to. Don't get me wrong, the Tom Baker is not a
place I'd like to build a summer home in or anything, but I have been tested
by this building and this disease, and I know I have proven something very
important to myself.

I'm 175 pounds today. I entered into this whole thing at about 205 so my
joke about going on the 30 pounds in 30 days weight loss plan seems to have
come true. Instead of the 6 pack abs and the chiseled chest I thought I
would have :-) I seem to have completely lost all the muscle tone in my lower
body. My body went and pulled all of the nutrients it required over the
past month from my muscle tissue instead of my fat. So I've still got some
paunch, but my ass and thighs have completely disappeared. I went to run
upstairs today at home and made it to the tenth step before collapsing on the
second landing for a breather.

For those of you who just caught that last line and are still processing it,
let me type it again.

"I went to run upstairs today AT HOME!!!!!"

That's right people. The reason for my absence is that for the past two
days, I have had a 6 hour day pass at home. I have re-bonded with my kids,
I have cuddled with my wife, and I have eaten very well. My doctor is very
optimistic about sending me home to sleep tomorrow and I am all for it. It
is amazing how much more energized you feel outside of a hospital. I step
out those double sliding doors at the entrance to the Tom Baker Cancer
Centre and although nobody can see it behind the surgical mask, I'm grinning
like an idiot every time. Now that my appetite is back, I can start taking
more medications by mouth. Once I'm more self sufficient and the doctors
decide that I'm ready, I'll be transferred to unit 58b. It's an outpatient
clinic for cancer patients and it's just down the hallway. Patients drive
in every day, and get their meds and vitals checked and then get the hell
out of there. All I know is I can't wait to crawl into bed beside my
wonderful wife and hold her until I fall asleep. My platelets are also
strong enough to support some light weight lifting. Get ready body, you
thought cancer was hard on you, wait till I'm done with you.

Prediction: I will be 225 pounds of solid muscle by next Christmas.
Caity's mom says that I'm perfect just the way that I am. In fact, aside
from the bald head, most people say I look rather normally built for a guy
right now. But, as most of you have already determined, I don't usually let
myself be satisfied with the concept of normal. 2005 will be a rebuilding
year, but wait till you see me then.

Speaking of seeing me in 2005, I want to alert readers to a slight change I
think I might make to the format of this journal. Once I go home, I want to
concentrate my time on re-building what I have lost, so I will be cutting
back on the entries. I will post a couple times a week, but I'm finding
that I have too much drive right now to stick my ass in front of a computer
screen and type for three hours. Those three hours will now be spent
working out, and I will take advantage of the fact that I'll have my kitchen
back again to cook some serious power food.

Now, this timeline only works if I am able to keep the big forms of graft vs
host disease away. Aside from that, it's waiting for my medications to go
away so my new immune system can start fighting on it's own. I do have
white blood cells right now, but they are reduced in effectiveness, by the
immuno-suppressant drugs, so places like offices, malls, movie theatres,
sports stadiums will be dangerous to me until I can fight germs on my own.

Well, that's about it. Here's hoping that this is one of the last times I
find myself alone at a public computer in the patient wing of the Tom Baker
Cancer Centre.

Adam (Survivor) Price

Just a quick note to all you guys. I just got my blood counts from this
morning.
Blood Product Normal Yesterday Today

Red blood cells 130ish 109 109 (needs work)
Platelets 150-500 61 66 (able to shave with a razor now)
White blood cells 4-7 1.2 3.5 YEAH BABY
WBC-Neutrophils over one is good 0.9 2 POINT FUCKING 8 BABY

I am not on any big immuno-suppressant drugs, I have been cleared to
run around willy nilly with no surgical mask. Everyone is going to see my
smile tomorrow, and I've been given the expressed written permission to kiss
the hell out of my wife. I blew everyone away with today's blood work I
guess, because they've been waiting to tell me ever since I left.

Anyway, I'm off to talk to my beautiful wife in the common room since I let
the cable and phone go in my room. I've also got to go find a non-used TV
around here so I can watch Extreme Home Makeover tonight. My right eye is
still a little blurry, so I can't read the Lance Armstrong book I got, but I
think cranky buddy boy over in the next lounge is getting pissed off with
the lack of television on TV. Luckily he looks, really tired so I should be
able to catch Extreme Home Makeover after he goes to bed. Some part of me
hopes that he is doing well, but frankly, I'm too happy about my blood
numbers to worry too much about others tonight.

Night everyone

Day +23 Part Two

2004-12-03T22:52:00.000-08:00

Oh yeah, I forgot to mention one more thing about today. I'm eating!!!!!! Good lord I love apples. I used to hate apples, but I can't get enough of apple related products. I'm starting to branch out into strawberry, peach, and melon, but good lord do I have craving after craving for fruit. Meat makes me gag, starches are unappetizing, and don't show me a vegetable, but I LOVE FRUIT!!!

On a sad note, we might have met the death of Adam's Chocolate cravings. The thought of chocolate is not appealing for me. I'm having a bit of difficulty looking at chocolate on TV, or smelling it in the hallway. I saw a commercial for a chocolate product this morning and all I could think about was how nice a fresh fruit flan would be instead.

That's right. the world's worst chocoholic on the entire planet just thought how nice a fresh fruit flan would be.

mmmmmmmmm FLAN

Goodnight

Day +23 Progress

2004-12-03T22:51:00.000-08:00

HOLY CRAP! Did we have a breakthrough in the last 24 hours. Sorry about not writing yesterday, but I was in a bit of a world of hurt. besides, I've got so much to tell you about what has happened to me.

So let's start as we always do with the medical side of things. We did a second CT scan today to check the progress of the air bubbles in my liver. What the doctors failed to tell me two days ago is that air in the liver is much more serious than I was lead to believe. Anyway, I'm happy to report that the air bubbles are gone and I've been put on steroids to fight the fevers. I would have liked to have dealt with the fevers earlier, but I understand that the doctors needed to rule out all infections before it would have been prudent to change tactics.

When I woke up this morning, I could have told them that I was feeling better. I really wish I could explain how much better I feel than yesterday. I actually refused a wheelchair ride to the CT scan and chose to walk all the way from the Tom Baker to the Foothills Main building for the scan. I used the hospital porter as a guide and a backup in case I was not able to make it all the way. I then got up and walked back to the Tom Baker.........

OUTSIDE!!!!!!

I can't even tell you how strong I felt being outside for the first time in a month. I think an armed gang of thugs would have had a tough time bringing me down this morning. The CT appointment was actually quite fun since all the staff knew about my anal adventures to come. I had the doctors in a bit of a panic about my bowels so today I've also had my first ever enema, my first ever adult diaper, and my first ever anal probe. I know there's a more proper name for it, but come on, someone shoved a foot long tube up my butt and took samples by cutting small pieces out of my bowel wall. We also found a polyp, which the doctor was more than happy to deal with free of charge out of the goodness of his heart. Anyway, let's get back to the CT scan for the moment.

On the front of my patient file is my schedule for the day. That means that everyone in the CT department knew where I was going after the scan. I think they used every single butt joke in the English language. Thanks to everyone in the CT department, cause you made my day.

As far as the rest of it went, the enema was an enema. The best way I can describe it was like being a Tim Horton's cream filled donut at the cream filling stage. It wasn't bad, it just felt "original"

And you know, while I'm on the subject about fun appointments. The anal probe was really cool. I was awake and got to watch the entire thing on the camera. It's not every day that you get to see the inside of your own ass right, so I had to go for it. They had a nice little drug cocktail for pain and anxiety, that probably made the whole experience much cooler than it was. But come on, I got to see the inside of my own butt!!! The doctor who did it was also named Price, so we had a lot of fun on that point as well. Come to think of it, it was most likely the drugs that made it more cool, so scratch that whole last part about anal fascination .

Emotionally, I'm doing great as well. I had a real problem earlier on in the week, which I'm happy to say was cured by a lot of visiting by my mom. Mom, you will never know how you helped me get through the hard mornings. Don't forget Caity, she's up to doing her supermom/supersupporter/super person routine as usual. I figure that she's about ready to evolve into a being made up of pure energy anytime soon, since no human could do what she does day in and day out.

Now, how about something a bit more serious for a bit. I wasn't sure about this week when it first started. I tried not to let anyone know too much about how I was feeling, but I was about 50% ready to call it quits. It's amazing how much a two week old fever can effect a persons will to fight. I didn't want to tell Caity about that, but luckily, I got to wrestle through a lot of my problems with Mom. I'm happy to report that I am officially 100% back to fighting spirit.

Fuck you Leukemia, if that's the best you got, then your best isn't nearly good enough.

Day +21 Mystery Fever

2004-12-01T22:49:00.000-08:00

So Caity is typing this for me while I dictate it. Seeing as I've been laid up for most of the week with chills and fever. I tried to be a bigshot last night and make it through without any nausea drugs and i was rewarded with vomiting every 1/2 hour throughout the night. The nurse came in in the morning decided to but me on the heaviest anti-nausea drug they have. The only problem with this drug is you can only take it once a day. It's 9:30 PM right now and i have yet to throw up since they gave me the drug but i can see myself doing so shortly. The doctors are a bit concerned about what is causing my fevers. Apparently, after my CT scan yesterday they found a small pocket of air in my liver. Normally in a healthy human being you barely register that you have air in liver, but in me they think that this my be causing my fever.

I guess i should talk about how i woke up yesterday. I realized that yesterday was the 4 week anniversary of my center line insertion. What amazes me is how many times the staff chose not to use it. Now i realize with certain procedures there certain requirements but my first vivid memory yesterday morning was blood being drawn from the central line, left arm and an IV started in my right hand...all at the same time!!

Apparently the CT guys don't like using the central line and hence the IV insertion. The CT experience wasn't as bad as I thought it would be. I was expecting a 10 ft. long tunnel of darkness but instead it was just a tiny room i was passed through. The only lousy part of the procedure was the fluid i had to drink an hour before hand. I think the hospital staff find it amusing to trick the pukey guy into a variety of nasty liquids.

So in general physical terms the doctors say i am doing above expected with regards to my blood levels. The only thing they are waiting for now is to get this fever out of the way so i can go home. Another interesting phenomena is the lose of patches of hair. Surprisingly enough i have tons of stubble on my head. What i am noticing however are the bald patches on my arms , legs, testicles and most of my pubic hair making me look like a 12 year old.

Emotionally however i am not doing well. I seem to be crying much more than usual and for silly things....like the Canadian Tire commercial where the man wants a small Christmas party and it turns into a big one. At the end of the commercial they wife tells the husband they are expecting another child by the next Christmas. As soon as she does this I begin to ball like a little child. I', becoming very tired of this place. I find myself waking up in the morning and crying because i know where i am. Every hospital room has its own ambience...lighting to come and go in the night. It's because of this that i know i am in a hospital room. I used to dream about being at home but now all i can dream about is my hospital bed. Caity brought the kids here 2 days ago and instead of reacting in a fatherly way my 1st reaction who are these babies. I didn't recognize them as mine. They are twice as large as my babies The only memories i have are of the twins as premies. i feel like i am missing out on so much. And i feel guilt that i am imposing this on everyone else.

So to close i am going to half heartedly promise to write in my diary tomorrow.

Thanks for the emails

Sorry for the tardy responses.....I haven't been able to check up in a couple of days

PS: Wendy, thanks for the hats

Day +19 Caity's Post

2004-11-29T22:48:00.000-08:00

Today was a hard day. It is not easy to see the best father in the world be too sick and tired to take joy in his children. Elli and I took the twins to see Adam today at the hospital in hopes of giving him a boost. Unfortunately the nausea persist and he had another fever today. In addition it is difficult to keep hydrated when even water is difficult to keep down.

On the brighter side his counts are rising slowly but surely, Adam and I took 3 laps around the ward which is 3/13 of a km, and he consumed a quarter of an instant breakfast tonight.

Even with all those positives, some days it is hard to stay strong. But I have faith that tomorrow will be better.

Good night Folks

Day +17

2004-11-27T22:47:00.000-08:00

It amazes me how much energy I've lost in the past 3 weeks. I used to
quietly chuckle when the nurse said I had to walk around the ward 5 times
per day and have a shower. I thought this was silly, since 5 laps around
the ward and a shower is nothing right?

Well, it requires a hell of a lot more energy then I've got right now. My
day so far has consisted of sleeping, and entertaining nurses and a few
visitors. It is nowhere near the energy depletion that I am currently
feeling. I have a feeling that these next few entries will be shorter than
what you're used to, but I'll write as much as I can.

The days are starting to get to me. I'm pretty sure that I sleep so much
just to get away from the life I'm currently living at the hospital. And it
doesn't matter when or how I wake up, I find that most times, I need to
figure out where the hell I am. My hospital room, while familiar, has this
emotional connection with me. Right now, I'm in the lounge, which is a
public area that everyone can go. I generally feel ok out here because I
would not come out if I was about to puke. My room is different.
Everything in that room reminds me that I'm a little closer to death than
most people out there. I can't eat anything that comes from a hospital
tray. Every little nook and cranny of the ceiling has been studied by me
during hours of chemotherapy. I'm probably just being irrational here, but
the thought of having to go back to my room makes me want to cry.

So what do I do? My hospital room is a constant reminder of just how bad a
person can feel. On the other hand, when I'm outside of my room, I'm
terrified that I'm going to catch a bug from someone else. This could all
be a product of my tired brain, but I'm really not dealing well tonight.

Oh, and it may be against the rules, but I want to thank my wife Caitlin for
cuddling with me for two hours tonight. When I'm with my wife, nothing
seems as bad. Even though I've been over-sleeping, I had the most restful
nap in her arms tonight.

I'm done. Goodnight

Day +16 Engrafting

2004-11-26T22:45:00.000-08:00

Well, yesterday I officially engrafted. There was an increase in my white
blood cells up to 1.2 and I actually had some new Leutrophyls floating
around. Bone marrow does not do this sort of thing unless it's happy and
nuzzled into one of my bone cavities so all the doctor's are very happy.

This has led to a bit of a fever and a few days of nausea again, but now
that I've learned how to puke with that gross chunk of dead skin in my mouth.
I kind of have to puke like I'm swimming the front crawl.

1. Head goes down and vomiting commences
2. Lift head up and turn it to the left like an Olympic swimmer. This will
cause the flap to dislodge itself from my airway and lets me get a few
breaths in before I've got to go for it again. No puking so far today and
it's almost 11:00pm. (Knock on wood)

Here's another medical tidbit that I don't think I've mentioned. from
November 2nd to today, I've lost 10 KG's. Luckily it's come mostly off
the pot that I had, so I'm not too upset.

I wish I could write more but I need another good night of sleep. Hope you
guys don't mind out there.

Thanks

Day +15 Stoned

2004-11-25T22:45:00.000-08:00

STONED!!!! too many drugs

Day +14 And off goes the Esophagus

2004-11-24T22:43:00.000-08:00

Hi Everyone

Don't look for a funny entry here as I'm in a rather somber mood. I was
given the authorization to go for a day pass since my counts were doing
great. I was getting ready to pack when I coughed once. That one cough,
must have dislodged a piece of dead tissue or something else, because my gag
reflex kicked in and made my vomit. The only problem with this particular
session was the fact that the whatever it was in my throat was letting barf
out, but no air back in. So for about 30 seconds of this I thought I was
going to die. The doctors and nurses do not seem to be worried, but I'm not
terribly excited to go to bed. If I cough once in my sleep and that thing
starts choking me, Who the hell is going to know I'm in trouble. I realize
that they've dealt with this a thousand times before, but this is my first
time and I'm really scared.

My best description of what it feels like is this. Someone has shoved a
ping pong ball into my throat and every time I breathe the ping pong ball
blocks the air from getting to my lungs. I've managed to find positions in
which I have a partial airway, but it hasn't worked very well on the first
two attempts.

I think I've learned to be tough around here in other ways and with other
procedures that they do to me, but I feel like a 6 year old boy on a scary
amusement park ride. I don't know when this is going to end, and while it's
happening I'm not sure if I'm going to live through it.

With the amount of emails I got today, I doubt I will be able to get an
reply out to everyone so I apologize in advance. I do however have a very
important question regarding my current choking problem. If you or anyone
you know has a suggestion on how to more effectively deal with the problem I'm
having I need to know ASAP. If you could change the subject line to
"choking", I'll know which ones to read first. Thanks in advance for your
help.

Thanks for reading, but I've got to cut this short. I'm starting to have a
bit of nausea, and I need to get to my room right now.

Adam

Day +13 - No Entry

2004-11-23T22:26:00.000-08:00

No entry....too drugged and feeling lousy!

Day +12

2004-11-22T22:25:00.000-08:00

Well, not that I thought it would happen at all, but after receiving zero
emails for pictures of my "other balding locations" I've decided to close
the competition.

I think I'm better than yesterday. I had a pretty good fever there last
night but the doctors are not too excited about that. I may be wrong, but I
think my hair loss has ceased. I still have all my leg hair, and arm hair.
Only the tough itchy ones stayed behind "down there". All my limbs are
really itchy, but that is most likely caused by the anti-biotics.

Oh, and I just gave my IV a quick glance and I currently have 6 hanging bags
and one mechanised syringe pushing stuff into my body.

And my appetite is returning. All I need to do is get my self loaded up on
painkillers and hope I can still taste the chocolate as it pours into me.

I also might be able to come home tomorrow if my counts jump overnight.

Well everyone, I'm going to get some sleep. I'll be back tomorrow with a
well rested article.

Take Care

Day +10

2004-11-20T22:23:00.000-08:00

Hi there everyone, this will be short because I'm getting really tired. The
sores have move down into my throat, making swallowing an unpleasant
adventure. I also threw up twice from a fever, and let me tell you
something about pain.

Nothing quite hurts as much as warm bile, burning it's way passed the sores
in my mouth. I think that's what made things worse today. Dr Chaudry made
a bold prediction today. He proclaimed that today and possibly early
tomorrow, the pain will be at an all time high. After that, patients start
to show significant signs of recovering, and the body is able to start
healing itself again. I can do two more days of this. No problem.

We discovered small black dots all over me today, and that was because my
platelets were down to 10. It was as if the SMURFS had a pogo stick contest.
Once the doctors saw the low platelet count, they added some anonymous
platelets from another good soul. I now have parts from two different
people inside me. As my red blood cells start to fall hard, I'll get red
blood cells from another kind soul. So people, go out there and give till
it hurts!!!!!

Just kidding, once again thanks for all the emails and have a good night.

Day +10 The shedding

2004-11-20T22:22:00.000-08:00

Saturday November 20 2:30 AM

So my hair is falling out in clumps. As I write this I am completely bald
on my head, and becoming more and more like a 12 year old boy by the second.
I was expecting the hair on my head to fall out all at once, but I was not
quite prepared for the mass exodus of pubic hair. It's really itchy as
well, so I'm making Professional Baseball players seem polite by comparison
with all my "scratching".
Another bit of news I have to report is the solution to the mouth sores. I
now have four lines running into my body, and one of them is a painkiller
called Fentanyl hooked up to a trigger. I get a little at a time, but then
I can press the button for an instantaneous burst of numbing. I love my new
drug. It also has a drowsy effect that knocks you on your ass which is fine
by me, since my first memories of today started at around 4 o'clock. That's
right, I slept through two food deliveries and who knows how many
assessments on my vital signs. At this rate, I could probably sleep through
the entire hospital stay if I can get someone manning the special button
while I sleep.

The article my Aunt Lise wrote about me was published in the Hamilton
Spectator today. I got absolutely crushed by the email from the Hamilton
area and I want to thank everyone of you for your support and prayer. I
spent 2 hours checking my email today and writing back to as many of you as
I could. If I missed a couple, I'm sorry, but please know that I loved
every email that I got. I also met a soul mate from Calgary who just happens
to be a lot like me. His name is Adam, he's 13 and he also has CML. Well
Adam, you know what this means don't you? You and I have to fight this as a
team. Let me know if you want to pair up and kick the crap out of CML,
because I'm looking forward to working with you.

I'm going to call this a short one today. It's already 2:30 in the morning
and I need to push my magic button again.

Tomorrow, I'll have a picture of my new bald head up on the website. Caity,
this means you need to bring your father's camera to the hospital. And just
so everyone knows, the head shot of me bald is a freebee. Pictures of any
other balding areas will be supplied to the highest bidder.

That's about it people. I'm going to bed.

Day +9 Mmmmm Chocolate

2004-11-19T22:15:00.000-08:00

Holy crap can the human mouth hurt or what? Let us recap what I learned
today.

1. Morphine makes me very sleepy and gives no pain relief what so ever.

2. A day in the hospital goes by much quicker when you're only awake and
coherent for 5 hours of it.

3. The ice machine maintenance person does not read my journal. No ice
for Adam today.

4. You cannot kill an ant by dropping it from a high distance. The ant's
body reaches terminal velocity after 4 inches, so they hit the ground at the
same speed no matter how high you drop them.

Sorry, I got number four from the new show on Spike TV called "Hey! Spring
of Trivia". It's a trivia show from Japan that has the same post-production
modifications as Most Extreme Elimination Challenge. Same over-dubs and
sound effects just a different venue.

So let's jump into the medical side of things. I am a model of perfect
health right now if you don't look in my mouth. My tongue has swollen and
there are indentations in the tongue from pressing against the sides of my
teeth. I have to manipulate my tongue (get your minds out of the gutter) in
a twisting motion to make closing my jaw possible. The sores underneath my
tongue are a constant reminder that no matter what kinds of tasty things are
stuck to my upper lip, nothing is worth the pain involved in licking it off.

On a negative note, the eating of pudding has become too painful. Pudding
consumption has ceased for the time being.

On a much more recent positive note, I've discovered that you can dissolve a
chocolate pudding into one of my instant breakfasts. The new recipe
consists of one cup of CHOCOLATE milk, one CHOCOLATE pudding, and one
CHOCOLATE instant breakfast. This stuff is incredible, but I'd get some
insulin ready if you want to try this in the privacy of your own home. I
don't even get to taste most of it. In order to eat at all, the straw has
to be completely past the sores on my tongue. I get that slightly sick
feeling that lets me know that I've had too much chocolate, but other than
that, there's not much in the taste category. The nurses are happy that I
can get anything into me right now, so I'm going to stick with my all
chocolate diet.

I want to say Hi to a couple of my new friends. Lisa, I had a great phone
conversation with you and I hope that we keep in touch. I also have another
inspiration that I met due to this website. Ashley, from right here in Wild
Rose Country has gone through more in her life then I could ever go through,
and she's still kicking ass and taking names.

Ashley's email brought up a feeling in me, and I wanted to talk about it a
bit before I forgot. A lot of people email me to express how sorry they are
that I got this. I've actually been thinking about this for a while and if
I had the choice, I would take having cancer over watching someone go
through it. I see how people look at me when they see me. I see fear,
helplessness, and confusion in many of those around me. They look at me
like I looked at Caity when she was delivering our twins.

I was in the operating room with Caity tucked into a small space where they
could not fill up with machinery. My job was to sit there and coach. The
word coach implies that I had the prior knowledge and experience to
successfully guide Caity into motherhood.

Two words, BULL SHIT

I was a mess. I didn't know if I was coming or going. All I could do was
sit there and act on instinct. Caity thinks I handled it well, but I think I
could have done more. I felt helpless as the doctors worked on Caity
because I knew that I did not have the ability to help in any way.

I think that this is how friends and family of cancer patients feel when
watching someone go through this. There's nothing they can do to ease my
mouth sores, or calm my belly when I vomit, or protect my kidneys from
chemotherapy damage. Once I had that first shot of Chemotherapy, I became
100% dependant on the Hospital and it's staff for my survival. All friends
and family can do now is stand back, rub my head and hope to hell that
things go the right way. I've never done well at watching someone I love in
pain. For me, knowing that I can't help makes me feel weak and powerless.
At least this way I get a little bit of control over the situation right?
Well, I've said it before, and I'll say it again. My wife kicks ass.

Well, it's midnight now so I'm off to bed. Lisa and Ashley, take care of
yourselves and be strong.

goodnight.

Day +8 Here come the Sores

2004-11-18T22:10:00.000-08:00

Thursday, November 18, 2004 12:19 AM

> Well, so much for the uneventful day. The mouth sores have come in with a
> vengeance. They run all along the sides and underneath my tongue. I'm not
> even going to bother describing what kind of pain I feel when I yawn. I
> asked the doctor how long to expect this to last, and I was told that once
> my levels start coming up again, the sores should go away. But I'm looking
> at about a week before my counts come up.
>
> To deal with the mouth sores, I was put on Codeine this afternoon which did
> nothing. I am now on IV Morphine to help the pain and I've got a substance
> called a "Pink Lady" which is a mixture of Maalox and some kind of local
> freezing medicine. This stuff coats every pipe and then numbs it right up.
> I was NOT ready for that sensation last night and almost pushed the nurse's
> button because I thought I was going into anaphylactic shock. I'm not
> kidding, that Pink Lady stuff really knocks the nerve endings out!!! I did
> find out however regarding my mouth sores that things will most likely get
> worse before they get better. Lucky for me, I can deal with the pain. It's
> the nausea that I can't stand.
>
> On the nausea front, my shallow-bottomed green puke bucket has not seen
> action for almost a full week. My back muscles have finally healed, and you
> should see the abs I'm getting. I guess losing 10 pounds in a week and
> constantly puking does wonders for melting the fat off the abdomen. I
> thought I looked good before, but man I am one sexy beast right now. It's
> too bad that some of these medications that I'm on "quiet the beast within",
> or I'd be living it large on Unit 57 ;-)
>
> While we're on looks, I have an open question out there regarding hair loss.
> I still have all my hair, and it hurts to pull it out. I was under the
> impression that I would see some kind of hair loss by now, but not a hair
> has fallen yet. Are there any warning signs like itching that signify that
> you are about to lose your hair? I'm not concerned at all about losing my
> hair, I just want to know if it's going to happen this week or not.
>
> Anyway, I know that I talked a little about the emails I've been getting
> last night, but I received some tonight that really touched my heart. There
> is one person I have been in contact with that knows a four year old boy who
> BEAT Leukemia. This has been the hardest thing I've ever done, and I'm old
> enough to understand what's going on. I don't believe there is a measuring
> device capable of coming close to measuring that little boy's strength.
> Gavin, I don't even know you, but YOU are my new inspiration. Everything
> that I'm going through, you probably went through so my goal now is to be as
> tough as you. Hang in there kid.
>
> There was another person I wanted to give a shout out to. Lisa, I was
> serious in my email to you, please get in touch if you need anything. Your
> situation is a bit different than mine, but I figure that we may be able to
> compare notes and kick the shit out of this stupid disease.
>
> I'm actually quite surprised how quickly this entry hit the page. I've
> honestly been having trouble writing this last little while but I think I'm
> over my writers block. I'm pretty sure that the stress of knowing that way
> more people are reading this than I originally imagined got to me the last
> couple of nights. I can remember sitting down to the keyboard and drawing a
> blank about what to write. However, thanks to everyone who emailed me in
> the last couple of days, because you have given me the fuel to keep going.
>
> I have one last thing that I want to say before I go to bed. The nurses
> here kick all kinds of ass. Anyone who is able to deal with all the bodily
> fluids that I produce is worthy of a medal in my eyes. I guess knowledge of
> my website is passing through the nursing staff here, and I have been
> instructed to mention the following fact.
>
> The following message is brought to you by the Nursing Staff of Unit 57
> THE ICE MACHINE IS
> BROKEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
>
> Since I will also be requiring the services of the ice machine in the next
> two days to sooth my poor mouth, I must join forces with the nursing staff
> and request that the ice machine be fixed as soon as possible. It should be
> mentioned, that in the event of civil unrest at the Foothills Medical
> Centre, due to the ice machine fiasco, this web diary, and it's contents
> will become rabid supporters for any causes the nursing staff wish to
> support. I figure it's the least I can do for the people who clean up and
> process everything that comes out of me.
>
> All joking aside, to all the staff on Unit 57, I owe you my life. This
> place does not scare me because I have seen the kind of people who work
> here. I know in my heart that I could not have better care anywhere else.
>
> So lets fix that Ice machine people.
>
> Goodnight

Day +6 Eye of the Tiger

2004-11-16T22:09:00.000-08:00

November 16^th 11:00 pm

The mouth sores started today. It’s nothing I can’t deal with right now, but it’s starting to get uncomfortable. My lip corners are cracking and making anything thicker than pizza a living hell. I’ve passed the time by eating pudding, pizza and instant breakfast shakes. I’ve discovered that if you mix a chocolate instant breakfast with a hot chocolate powder and chocolate milk, you get quite a fulfilling snack. It’s the equivalent of pouring chocolate tar down your throat, and hoping that you don’t suffocate. Of course, if your going to go, chocolate should be involved in some way, shape or form.

At the other end of things (literally), my body has been making me feel equally unpleasant. My body is starting to clean out the system so all the dead cells are exiting my body in the best way they know how. I’ve had at least 10 full size “movements” in the past 24 hours. The reason I think it’s dead cells is because I’m sure my digestive system was rather empty as of day three in the chemotherapy. Anyway, all the traffic down there has caused to area to get “irritated”. And …..You know, unlike the nipple story I know when to draw a line with this subject.

NEXT!!!

Ok, I can’t believe how many people have emailed me. I’ve tried to put all of them up on the website, but if I missed yours, or you want information changed or removed please email me. It took me about an hour to simply check my new emails for today. I’ve had offers to help from complete strangers and I’m just starting to understand what it means to be a cancer survivor.

I’ve been walking the line between survivor and denial for quite a while. I always had the thought that there was no way I would ever look as bad as a cancer patient. I mean look at them. They’re frail, they have no hair, they can’t even take care of themselves. Right?

Wrong.

Walking around in here I’ve seen some people who fit the stereotype I just mentioned. The only way they don’t fit the cancer patient stereotype is when you look in their eyes. I’m not sure what exactly the “Eye of the Tiger” is, but Rocky had it, and every single person on this ward has it. I’ve gone through nothing compared to some of the patients in unit 57, and they’re still fighting as hard as day one. And if they win the fight against cancer, is that enough? For many, the answer is no and they go on to fight cancer on a larger scale. There seems to be an unwritten mentorship program because at least half of the emails I got today were from survivors offering their help and guidance.

I wanted to thank everyone for your emails, they really made my day. Once again it was a slow day for medical news, and I’m sorry I couldn’t provide any more detail into the “posterior problem”. It’s only 11:30 but I think I will turn in early.

Once again, to everyone out there who is reading this. Thanks from the bottom of my heart.

Day +5 Front Page of the Herald

2004-11-15T22:07:00.000-08:00

November 15, 4:30 PM

My face was on the front page of the Calgary Herald today.

My email inbox maxed out with words of encouragement from complete strangers.

It's been a neat day so far.

Well, I guess that neat doesn't really describe how I'm feeling right now.
I'm blown away. I knew that the Calgary Herald was going to be doing a
story on me, but I figured that it would get hidden somewhere in between
tire advertisements at the back of the weekend section. I guess this kind
of subject is more interesting than I thought. Oh and I just want to say
publicly that Sarah Chapman writes one hell of an article. One of my
biggest fears in doing the interview was to have my words twisted to fit a
particular tone the editors were looking for. This article was 100% dead
on. Again, what can I say, I'm speechless.

I also really want to thank everyone for their kind words today. My hotmail
was crushed with emails from complete strangers with pages of encouragement.
It's a new project of mine to answer every email I get, and it's almost a
full time job. I'm a day behind right now, so I'm not ignoring you if you
don't get a reply.

So what do we talk about today? Medically speaking, I'm right on track as
far as things are going. Oh, and I managed to fight through the nausea last
night so there was no need to eat lots of pudding. I still ate a full
family pack of pudding last night anyway...just to be on the safe side
right?
My mouth is starting to get a little raw, so the mouth sores are in my near
future after all. Dr Tang is quite happy with my blood levels, and I'm
taking the fact that I'm on my third consecutive day pass as a positive
step. I'm actually starting to become too comfortable in the hospital. I
woke up last night with a blood pressure bandage on my arm in mid-cycle.
Apparently, I had slept through a "blood letting". Someone was actually
able to walk into my hospital room and bleed me at will without my noticing.
I think I'm going to attach little bells to my central line.

I'm calling this one short tonight. This newspaper article is giving me
emotions that I'm having trouble dealing with right now. I also want a
quiet evening with the wife if you don't mind. Once again thanks to
everyone who emailed me today. Your words mean a lot.

Goodnight

Day +5 Things I want in my Hospital room

2004-11-15T22:06:00.000-08:00

>I don't even know what day it is anymore. The problem is that I can't
> figure out if that is a good thing or a bad thing. It's like being in a
> casino. They don't use windows or clocks in there to get people to stay
> longer. The only difference between a cancer ward at a hospital is that in
> a casino, row upon row of slot machines spit coins on casino patrons. In a
> hospital, row open row of cancer patients spit lunch at the poor Personal
> Care Attendants. Sorry, I think I promised to not talk about vomit this
> time.
>
> Oh, well onto today's topic. My friend Chantal sent me an email today
> asking me a very good question
>
> If, other than your children, there were three things missing from your
> hospital room that you wish you could have, what would they be and why?
>
> Wow, deep question. Stay tuned everyone because I'm just going to blast
> this response out. I honestly have no idea what the three things would be
> yet so you'll find out when I do.
>
> Item #1 - Apartment style furnishings. Right now the room is a standard two
> bed hospital room. There's a hospital bed, and hospital floors with
> hospital tables and chairs. I know this is probably considered more than
> one item, but I would like it if the room was designed to minimize the
> hospital content. A microwave or portable grill would be nice as well. I'm
> getting used to living in a hospital, but it sure doesn't do great things to
> morale.
>
> Item #2 - I realize that renovating an immuno-suppressed ward is a difficult
> procedure, but I would have really liked an internet connection in my own
> room. The two public computers they have now do the job, but there are
> times when I couldn't walk to the bathroom in my own room. How do I
> communicate with the outside world if I can't walk across the ward to some
> public computers.
>
> Item #3 - This last item was initially very important to me, but has fallen
> off the top ten list of things I would like in my room. I thought that I
> really wanted my dumbbells so that I could exercise a bit. Well, I had
> trouble going up a flight of stairs in my own house this afternoon, so I
> don't think I could use them even if I wanted to right now. So, that being
> said, the last thing I would want in my hospital room is.........
>
> A comfy bed. I could have lumped this in with all the furniture and items
> mentioned in item one. I sleep a lot here. I mean I really sleep a lot and
> that bed hurts my back after a while. The hospital keeps giving me day
> passes, but all I really want right now is to curl up in my own bed, and
> cuddle up to my wife.
>
> I can feel the next wave of badness coming on, so I'm going to wrap up for
> tonight.
> Shit, I'd better go get some pudding.

Day +4

2004-11-14T22:05:00.000-08:00

Sunday November 14, 1:30 AM

> So I got to go home today for 6 hours. I wasn't sure how many more times I
> would be able to get a day pass so I tried to make this day count. I
> watched TV, and fell asleep in my own bed for a while. It's really good
> that I'm getting all these things important things out of the way before I
> get sick again.
>
> As you can tell, I'm rather disappointed with my visit home. I really wish
> I had done more today, but all I wanted to do is sleep. I was also having
> another problem. Everywhere I looked, all I could see were dirty objects
> that I wasn't allowed to touch. Don't get me wrong, my house was spotless
> when I walked through the door, but I seemed to have developed a fear of
> public places. I'm worried that someone is going to sneeze on me and make
> me sicker than I have to be. I kind of feel like John F Kennedy near the
> Schoolbook Depository when I walk outside. I imagine little animated bugs
> like in the RAID commercials hiding in the shadows just waiting to get me.
> OK, I might be going a little "dramatic" with my comparisons, but there
> definitely is a fear associated with being outside. My hospital room has
> become my sanctuary. In there, I feel like I'm in a safe little bubble where
> nothing can hurt me. I realize I've always been an introvert, since I can
> spend days in my hospital room and be perfectly happy, so we'll see how much
> I enjoy the next three weeks.
>
> I also have an announcement regarding the status of my various arcade
> accomplishments
>
> Super Mario Sunshine - Finished
>
> Classic NES "Legend of Zelda" - Beaten level one and three. I cannot find
> the level 2 fortress in Zelda. Found all the other levels but I'm trying to
> play in order.
>
> I'm in the market for a Game cube game that's baseball oriented. If anyone
> knows of a good title for Game cube baseball, please let me know.
>
> I have one final thought for the day and then I'm going to go to bed. I am
> currently detached from all cords, pumps, IV bags, tubing, and accessories,
> without counting my central line implant. I was able to walk around, run up
> the stairs, and just be me for one day. The doctor's say that they're going
> to try and switch up all my medicines to pills and drinkable liquid. My
> only job is to drink enough water to stay detached from the IV. It's also
> easier to relax mentally when you don't have tubes and pumps that follow you
> around. I actually think I'm all better today simply because I don't need
> an IV.
>
> This game is turning out to be much more mental than I thought. I realized
> this last week when a simple bout of vomiting had me on the ground. You're
> body can be as tough as it wants, but the fight belongs to the mind. I want
> to thank everyone for their support, and their constant flow of emails. I
> know that I don't get back to anyone, but please note that I read every
> letter that comes in. If I get a few letters asking the same question, I'll
> write a few words on that topic.
>
> I'm running out of thoughts to write about at this second. If anyone out
> there has a question they would like answered, just send me an email and
> I'll address the question in the next journal entry I do.
>
> And don't worry folks, the gory stuff will come back next week when my new
> bone marrow starts engrafting. On deck for next week's entries are stories
> on hair loss, severe fevers, infections and mouth sores.
>
> It's 1:30 am and I'm going to bed.

Day +2 Puking for Dummies

2004-11-12T22:03:00.000-08:00

> So I could say that I was taking a day off my journal yesterday to celebrate
> Remembrance Day, but the truth is that I just got lazy. Caity tried her best
> to get me to write an entry, but to be perfectly honest, there hasn't been a
> lot to say for the last two to three days. I've felt tired on occasion, but
> other than a little fatigue I'm the old me again for the next little while.
> It will be around the end of next week when the shit is going to hit the fan
> again. I'm going to say this now, and get it off my chest.
>
> To any and all remaining Leukemia cells inside my body. If you thought last
> week was hard, wait till next week. I know I'm strong enough to take
> whatever hits me, but are you?
>
> The reason that I'm so confident in my abilities to take the next two to
> three weeks, is because after 3 days of continuous vomiting last week, I
> actually started to make a game out of the constant vomit rather than saying
> "Or poor me, Boo Hoo". I've actually taken the time to study what my body
> does while vomiting so that I could be more ergonomically efficient the next
> time around. I figure I should share the secret of the perfect vomit, since
> my research has seemed to help matters.
>
> Step one: Detecting nausea: If you feel nauseated, instead of fighting it
> and willing it away, go right for the bucket. Your body has come this far
> and you more than likely will lose the battle. The visual stimuli of the
> barf bucket should provide adequate mental stimulation to the central
> nervous system to induce vomiting.
>
> Step two: Getting comfortable: The best position I've found for is
> actually quite a classic pose. Visualize the sculpture called "The Thinker"
> and then give him a bucket in the outstretched hand. You can be seated on a
> stool, but I prefer the bended-knee wedding proposal type stance, to the
> more classic "Vomitary Missionary Position"
>
> Step Three: Cleanup: Vomit will get everywhere. Despite your best
> attempts, you will be covered in splash back if you vomit in a shallow bowl,
> or toilet. The best receptacle for vomit catching would be a very deep
> cylindrical tube about three feet long. At that distance, the energy left
> in the rebounding vomit drops would not be sufficient to cause a high enough
> splash back.
>
> What's wrong? Not everyone has a three foot tall saucepan? Well, I was
> only given a six inch deep bucket and learned very quickly that a "close to
> the bottom of the bowl" strategy would require more cleanup than I was
> really willing to accept. I did discover that by angling the bowl in your
> hands and vomiting on the elevated side, part of the energy stored in the
> traveling vomit was dispersed by the friction of sliding down the bottom of
> the bucket. You might have also seen bartenders use this trick when pouring
> beer.
>
> Step Four "Prepping for next time": Prep work? To puke? Well, yes and yes.
> After bringing up 4 consecutive times, I started wondering if there was
> something I could do to myself that would ease the next wave of nausea that
> hit. Here is the secret.
>
> Eat two chocolate puddings right after vomiting to grease the pipes for the
> next time. You would not believe how well this works. To me, the worst
> part about vomiting is the taste of the bile. If you eat a couple of
> chocolate puddings, it gives the stomach something to bring up, rather than
> dry-heaving teaspoon sized globs of bile for five minutes. For those more
> adventure oriented than me, try adding a breath mint to the chocolate
> pudding. I'm not saying I'd want to throw up chocolate mint all the time,
> I'm just saying it makes the time go by a little better. It's the same
> concept at the dentist with the fluoride treatments. They always give you
> the choice of flavored fluoride foam, and none of the flavors ever taste
> quite right. If you think of it in these terms, it's not such a bad idea is
> it? Try it, you'll like it.
>
> Here we go on an obscure tangent since I have a weird announcement to make.
> It turns out that my Aunt Lise called the Hamilton Spectator regarding my
> journal, and they apparently want to get her to write the story. Now the
> Calgary Herald is in on the action. They interviewed me and took my picture
> this morning in the hospital. I guess the photographer was not to fond of
> my smiling in every picture. I think he was looking for the sickest looking
> pictures for some added drama. Whatever picture the Herald uses, please
> note that I smiled for most of them.
>
> So how do I feel about this jump up in viewer ship? Well, if it helps one
> person out there get ready for a bone marrow transplant, than I've done my
> job. When I was getting ready for this procedure, I found several websites
> with pictures and journal entries based on the days of the lives in Leukemia
> patients. It's sad to say this, but I'm almost 100% convinced that one of
> the hosts of a diary website that I viewed in my preparation is dead. For
> some unknown reason, his website is now locked and cannot be viewed anymore.
> I loved his diary the most because he was a young father, had CML and his
> Gleevec chemotherapy ended up failing him just like me. His name is Rob
> Glatts, and he really helped me out. I know it's a long shot but if anyone
> out there knows who Rob Glatts is, please let me know, because I'd like to
> shake his hand.
>
> Another new update in the Price home as my mom has finally come up again
> from Ontario. I know have three moms looking after my babies. I'm not
> worried at all since all three of the moms have helped mold me into the
> person I am today. If they can get togather and bring up two more me's the
> same way, I'd be happy with that. I'm also glad that my mom is here because
> that takes the pressure of Jim and Sandi. Those two need a holiday in my
> humble opinion
>
> Anyway, back to my mom. I don't think she's really doing well with all
> this. She walked into my room today, and as soon as she saw me, her
> trademark smile disappeared. I can't imagine this being terribly easy on a
> mom. If one of my twins was sick, I'd probably be dealing with it just as
> well. The only thing I can say to my Mom, and everyone else out there is
> that I FEEL FINE. I will be bad but I am more than ready for it. I know
> that this is a tense situation for everyone involved, but let's stick to
> worrying about stuff that is months down the road. I am not dying, I am
> simply the only male in the galaxy that is told to stay in bed and play
> videogames. I get anything I want brought to my bedside, and I am pampered
> and attended to with great care. I can eat 10 pudding cups in one day and
> people applaud me. You know, you word it like that this whole thing doesn't
> sound too bad does it?
>
> Well, aside from the nausea it's not too bad.
>
> Goodnight everyone.

No Entry - Too Sick

2004-11-11T22:01:00.000-08:00

Chemo Day 8

2004-11-10T22:00:00.000-08:00

> Well, Adam is back in the good life as of about 3 pm today. The last of the
> chemo is still trying to figure out which end it wants to come out, but
> today I had power to turn off most of the nausea I had. I walked around the
> ward, I even spent ten minutes on the exercise bike. I was even able to
> play a game of cribbage with Caity. She won, but at least I was able to
> focus on the game today.
>
> Oh, and for the record, last night I hit the triple crown of vomiting,
> urinating, and having diarrhea at the same exact time. Since then however
> I've been great. It's quite an interesting sensation when you've just
> finished chemo. You've just spend 7 days in complete and utter hell, and
> even the slightest relief anywhere in the body is a wonderful feeling. The
> doctor's say I should have at least a 5 day period before the worst of the
> procedure hits. This means I get to hang around the hospital pass time
> until the infections, flu's, and the Graft vs Host disease sets in.
>
> For those who don't know about Graft vs Host, here's the Cole's notes
> version. In a liver transplant, my body's immune system would recognize the
> new liver as foreign and would attack. In a bone marrow transplant, I'm
> getting a new immune system which will eventually start to attack all the
> foreign things it finds, like all the rest of me.
>
> Yep, that's right. I'm sitting around waiting to get brutally sick again.
> GVHD likes to attack the kidneys lungs, liver, eyes, and stomach, so when
> that time comes, I'll be put on every known anti-rejection drug on the
> market to protect myself from any long term effects of the transplant.
>
> Damn, I forgot to talk about the transplant itself. Well here's what
> happened.
>
> A nurse woke me up at about quarter after twelve in the morning this
> morning. In her hand was an IV bag filled with one and a half LITRES of bone
> marrow. The only thing I could think of when I saw that much bone marrow
> was how sorry I was for the other guy. My donor had the bone marrow biopsy
> from hell it looked like. On the bright side, the stuff was fresh and there
> was lots of it, making my chances even higher that this will succeed. It
> must have come from somewhere close if it was fresh, so everyone ask around
> to see if someone you or your friends know has just given up one and a half
> liters of fresh A+ bone marrow.
>
> Anyway, over the next three hours, someone else's bone marrow slowly dripped
> into my veins. I really am a mixture of grateful and disgusted feelings
> with the whole process. While I am very happy that yesterday was hopefully
> the brand new start to my life, I am a little disgusted from watching
> someone else's marrow drip into me for three hours. At least with a heart
> transplant, everyone doesn't stand around staring at the donor heart for
> three hours. It goes in and that's that. Not this drip, drip, drip of
> someone else's bits.
>
> On that same token, I want to publicly thank the donor of my new immune
> system. I don't know you at all but I have a feeling that your in Canada
> somewhere. It could be my unique gift of intuition that freaks out everyone
> or just a wild guess. Here's what I think.
>
> 18 year old male.
> Lives in BC or one of the North Western states
> Brown hair, blue eyes.
> 5'10", and 185 pounds
>
> If anyone wants to start a donor pool, that's my pick. And just for the
> record, I have not experienced any ESP from my donor. We are not swapping
> stew recipes with our brainwaves, though I guess some small part of me
> wished we could.
>
> Ok folks, it's 11:00 pm and I need to sleep. But just so you are aware of
> just how focused I am on entertaining you with my wit and prose, I actually
> was typing this as my nurse was drawing blood through my central line.
> That's right baby. Bleeding won't even stop me from my task.
>
> This is getting silly. Goodnight

Adam>

Chemo Day 7

2004-11-09T21:59:00.000-08:00

Well have no fear Adam is back. My lovely wife was kind enough to bring the laptop to the hospital so I could work on it from bed. So let me inform you of all the wonderful things that I got to do on my days off from writing.

I am currently stuck in my bed all the time with the exceptions of sudden and violent bouts of nausea and or diarrhea. My main problem has been guessing which end to point towards the toilet, since both the diarrhea and the nausea feel exactly the same at the very beginning. I'm starting to get the shakes which is a common side-effect from the ATG, but makes it that much harder to get anywhere in a big hurry.

On a happier note, Today was my last chemo day. I really hope that I never have to go through that again. I will admit that despite my best efforts I came to pieces on more than one occasion. I think that November 7th was the hardest since I was aware that after the last bag of Busulfin came off I would never be able to back out of this procedure. I was also the most messed up on the 7th. I haven't been dreaming so my only active memories of the seventh and eighth are of blood and vitals being drawn, puking, and watching the walls spin. I actually had some soup today!

So it sounds like I've got a three day break before they start hitting me with more severe drugs so I'm going to relax and enjoy my wife's company for the night.

Chemo Day 6

2004-11-08T21:58:00.000-08:00

As I drove home from the hospital tonight from visiting Adam, it occurred to me that somewhere in the world a stranger was possibly giving himself to us at that very moment. And even if it wasn't at that very moment my thoughts and thanks went out to him for his selfless act. Tomorrow is the big day, which in reality is going to be fairly anti-climatic, as the transplant itself is just another drip hung and infused into his central line over about half an hour. After that it is a 2-3 week waiting game to see if the transplant has taken. If all goes well Adam will be able to leave his DNA places and outwit the best CSI!!

With that little ditty to think about, the update on the man who really counts right now. He started the day off not bad but it seems the ATG has a delayed effect and by the time I visited tonight he was feeling pretty lousy again. With extreme nausea, fatigue and some vomiting. He did however manage to ride the recumbent bike for a couple of minutes earlier in the day. I'm not sure he still prefers his place to mine, but he is hangin' in there.

Any ways folks it's time I went to bed but lets all spend the next 24 hours thinking kind thoughts to the stranger out there who is about to become our hero.

Caity

Chemo Day 5

2004-11-07T21:57:00.000-08:00

Hi folks,

Your lovely host for this evenings entry is Caity, as our regular host wasn't feeling too well today. Unfortunately I'm not generally as witty or entertaining as Adam so I'll just work on the facts. As we all know from yesterdays entry today was a biggy with regards to the wonderful ministrations. As far as I can tell Adam actually handled the nasty bunny juice (ATG - an anti-rejection drug) quite well. If you can say having a rash, a fever, nausea, vomiting etc as fairing well. But if you read the list of side effects you'd realize this was quite well. The good news is that the protocol we had originally received from the hospital wasn't entirely accurate and today was the last day for the busulfan and fludarabine the two other chemos. In addition, the side effects from the ATG are supposed to be less on the second day.

All in all Adam's day consisted of lying in bed drifting between wakefulness and sleep, and regular trips to the washroom, with a little bit of vomiting. With each of the substances coming out of him being measured and recorded. For those of you that are aware of Adam's specimen quota theory, I believe that bone marrow transplant doctors would win hands down. For those of you that don't know the theory, it goes something like this:

Each month doctors have a contest to see who can collect the most urine samples, vials of blood, fecal samples, you get the picture. Each type of sample is given points based on it's invasiveness. The doctor who gets the most points wins the contest. We're not sure what the prize is but Adam figures it's a new Ferrari!!

Anyways I must be off to bed and hopefully tomorrow our regular host will be back.

Chemo Day 4 - First Post from the Hospital

2004-11-06T21:55:00.000-08:00

>I figured that I should be writing this now, since I really want to capture
> the moment in all of it's glory. I'm sitting in the patient lounge in a
> hospital gown because I've just thrown up all over myself. My street
> clothes are a complete mess and they don't make these gowns to fit someone
> like me. So let me sum up from head to toe.
>
> My eyes are bloodshot and sore, my mouth tastes like bile, my shoulders are
> squished back because hospital gowns are never wide enough to fit me, my
> stomach is doing somersaults, and my ab muscles just had the workout of a
> lifetime.
>
> Is this worth it. I know it is, but I've got to keep reminding myself that
> it's going to get better.
>
> I've also made the decision to stay in the hospital tonight. My bed at home
> is so much nicer, but I don't know if I could survive another car ride to or
> from the hospital. The nurse has promised to hit me with a ton of Gravol
> later on today so I'm going to just lie there and rest like a good little
> boy.
>
> This is going to be a short one today, because I've still got to phone Caity
> and get her to bring up my overnight bag. I'm also starting to feel another
> ab workout coming on and I'm guessing the rest of the patients don't want to
> tip-toe past vomit in order to get to the TV.
>
> And the best part of all this? I get three more days of it.
>
> Why couldn't I have just bought an ab machine

Chemo Day 3 - Part 2

2004-11-05T21:51:00.000-08:00

It's 11:30 pm and I feel much better. I guess all it takes is a long, hot shower and a simple plate of food to breathe some life back into me when my nausea goes away. Tonight's meal is peas, corn and some sous-plis (sp?), Julio's specialty. I won't give away what they are because it is my understanding that he is trying to sell the recipe. Trust me when I say that I would rather eat Julio's sous-plis than any of the best Swiss chocolate. If you had them, you'd understand what I'm talking about.

Anyway, once again I am bothered by the fact that I missed something in my last entry. Maybe it's because I felt like hell when I was writing it, maybe it was the lack of flow the entry had in my eyes, I'm not sure. The only thing I know is that there is a desire to write, and I'm not ready for bed.

Tomorrow's chemo will be day four in the seven day protocol. Guess what folks, that means that tomorrow is HUMP DAY. After all is said and done tomorrow, I will have finished more days of chemo than I have left. The only problem is that Sunday, Monday and Tuesday I get ATG, the most feared chemo for someone with my type of cancer. ATG is the clean-up hitter to use a baseball analogy. The proper name is Anti-thymocyte Globulin, but all the nursing staff call it the terrible bunny juice, since they make it using rabbit parts. I wish I knew how they make it or what part of the rabbit they use, but unfortunately they told be when I was deep in the trenches today.

The basic fear behind ATG is the fact that it is almost guaranteed to illicit severe reactions in almost everyone who gets it. It also comes at the end of one hour of Fludarabine, and three hours of Busulfin which is historically my worst time of the day. It's also a four to eight hour drip, meaning that on Sunday, Monday and Tuesday my daily chemo time will be eight to twelve hours long. I actually didn't do the math on this one until about 5 minutes ago so I'm actually a little nervous right now.

Fuck it.

I've had a topic in my head for a while now that's being dying to get out. It's something that has been bugging me for a while but I haven't had the desire to talk about it. I have a problem with one word in the English language that has been used to describe me on more than one occasion.

HERO

I hate this word. I was called it at the Lance Armstrong charity dinner I attended, I've been called that several times by several well-meaning people, but I am very uncomfortable with the notions that it implies. I'm going to use an analogy here so bear with me as I set it up.

There's a burning house down the street at the end of your block. You can hear the screams from someone inside. If you run into the burning building and rescue the other person YOU are the hero. I, my friends am the guy inside the house. Through no fault of my own my house is burning and it's my shitty luck that it happened to me. I am being rescued by the amazing doctors and nurses at the Tom Baker Cancer Centre and the Foothills Medical Centre. THEY are your heroes people, not me. I'm just the poor bastard who's got to rebuild his house. Call me a fighter, call me a survivor, call me a cab (ha ha) but don't call me hero.

On a similar note, I would like to give a mention to someone who inspires me. This may be surprising to most people, but it's not Lance Armstrong. The person I'm thinking of has achieved more and suffered more than Lance ever will. This person will forever in my eyes be my inspiration. I'm just lucky enough to be married to her.

Caitlin has seen my highest highs and my lowest lows. She has been stronger than a rock when it has come to my cancer. In the last month alone, she has given birth to twins, moved into a new house and had to wake up everyday with the possibility that she might have to raise our children by herself. She has provided me with the luxury of getting a full night's sleep for the past week, and has allowed me to absorb myself in my healing while she handles everything from the groceries, to dealing with my case manager regarding disability payments. I look at what she goes through everyday and think to myself "I'm glad I'm not in her shoes". You say that I'm strong? I dare you to spend one day in her shoes, because I doubt that there are many people out there who could do what she does.

I am the luckiest man on earth. I would gladly take on the hardest chemotherapy if it meant that I could spend just one more day with her.

I love you Caitlin Marie Price, with every fiber of my being.

We'll get through this.