Day +78 Roasting Chestnuts

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

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

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

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

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

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

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

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

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

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

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

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

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.