Day +230 Workout Aftermath Redux

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

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

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

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

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

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

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?

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.