Day +19 Caity's Post

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

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

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

STONED!!!! too many drugs

Day +14 And off goes the Esophagus

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

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

Day +12

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

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

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

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

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

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

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

>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

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

> 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

Chemo Day 8

> 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

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

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

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

>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

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.

Chemo Day 3

Today was the day that the doctors told me that I would start to feel the effects of the chemo. Now I've had my fair share of the flu and I also had those two mystery fevers that I thought were the result of some bad Dairy Queen, but I've never felt like this. Toward the end of my chemo today I was feeling rougher that I'd ever felt in my life. Just when I thought that I was turning the corner, the nausea hit. Now, I wish I could put into words how bad this nausea was, but I lack the literary ability to do it justice. The nurse asked if I needed some Gravol, and I happily accepted thinking that I would be back to feeling like my old self in no time.

Now, for those of you who have taken Gravol before, you should be familiar with how drowsy it makes you. At first you start to feel a little sleepy, and as time goes on you more than likely will be heading to bed. Keep in mind this is with the pill form. I got to experience these effects in super fast-forward since mine came in IV form. Imagine if you will all the effects of Gravol kicking in within 30 seconds. I'm not entirely aware of how I ended up in bed when Caity came to pick me up an hour later, but it was the only place I wanted to be on the car ride home. Every time we braked, accelerated, turned, changed lanes, my brain responded like my neurons were the snow in a snow globe. I think it's a sure sign that you're really sick when all you can think of on the car ride home from the hospital is how badly you want to go back to the hospital.

My counts fell for the first time since we started this interesting adventure. I didn't remember to bring the numbers home today, but everything is falling at the right rates. I was able to completely forget the name of my doctor. I was told that the attending physician's name was Dr Gigi, so when a doctor walked in 5 minutes later, I happily chirped "How's it going Dr Gigi?"

"I'm Dr Savois. I spent two hours with you a month ago remember? I was the one who talked you into this"

Oops. Oh well, I've got several drugs I can blame that one on. I did however find out the main difference between Dr Gigi and Dr Savois. Dr Savois was kind enough to point out that unlike herself, Dr Gigi was 6 feet tall, male and African-American. I really hope doctors don't hold grudges.

I must confess that I don't want to be writing today. It's taken me an hour to get this far and I'm having trouble keeping a reasonable flow to this entry. The two things keeping me going are my insatiable need to entertain the masses and my desire to read a complete set of entries when I'm old and gray. It's like when I would drive down to Okotoks at 4 in the morning every day to work out with Bruce Grieg, a world record holding powerlifter. It was hell every single time, but the efforts were worth it. Actually, that's a good topic for today so here we go.

Powerlifting for me was a way to prove that I was a normal human being. After training with Bruce for four months my max lifts were as follows.

Squat 595 pounds

Bench Press 315 pounds

Deadlift 450 pounds

Now I'm pretty proud of those numbers. I enjoyed the fact that I could lift more weight than most healthy individuals. I also enjoyed the fact that no one at the gym knew that I had cancer. I was pushed just as hard as a healthy person and I was able to keep the pace. In April, I had to choose school over working out to prepare for my new job, but I could have had a good shot at the medals in the Canadian National Powerlifting Competition if I had kept training. In fact, that is my first goal I want to attain when I am better. It also happens to be the thing that drives me to get through this.

I WILL BE WEARING A GOLD MEDAL FOR POWERLIFTING IN TWO YEARS.

God help anyone who dares to stand in my way.

Chemo Day 2

So, after yesterday’s miserable journal entry, I’ve decided to take a different road with today’s segment. Today’s entry will be filled with bad jokes, a little sarcasm, and a personal detail that will make my mother-in-law blush. Oh, and by the way, I want to give a public thanks to Pete Rainford for solving the Mario Sunshine problem I was having yesterday. Unfortunately, there are more levels left than I thought and I’m getting sick of that little mustached man and his silly little jumping. If I see Mario one more time I will personally make it my goal to get better just so I can track down the inventor of the Mario franchise and break his freaking neck.

On to today’s medical adventures. I had my second day of chemotherapy today, which consisted of a one-hour drip with the Fludarabine followed by a three-hour drip of Busulfin. For those of you who have been following my personal little soap opera, Busulfin can cause seizures, which is why I’ve been taking the anti-seizure medication called Dilantin. I also got to bring a new friend home from the hospital today. Her name is Ivy. She is a three litre bag of saline attached to a mini-pump, which is attached to my central line. Apparently, all this chemo has the ability to dissolve my bladder if given the chance, so I’m stuck with this traveling companion for a while. I also have to drink twelve to twenty glasses of water as well, so I’m planning on sleeping on the toilet tonight. I’ve considered simply getting Caity to get me a pack of Depends adult undergarments, but she’s already changing two sets of diapers. Besides, I don’t think the change table could hold my weight.

Now what everyone has been waiting for, the personal, mother-in-law blushing detail. I can’t even believe that I’m going to write this. Anyway, before you read this, go back to the November second entry to remind you of where exactly my central line is placed. Now what you don’t see in the picture is the fact that the one tube that comes out of my body separates into three lines with three ports. In the picture the three ports are held up with tape and a necklace to keep them from being caught on anything. If the dressings and the necklace were removed the ports would hang about 3 inches past my right nipple. Everyone got it? Ok. So I’m lying on my back in the hospital while the nurse is cleaning and redressing my bandages, and the lines keep slipping off my chest. Every time they fall, the nurse picks them up and places them back on my chest. Unfortunately, in the process of rolling down my body, the lines repeatedly brush my right nipple. Well, to make a long story short, my body rather enjoys stimulation in that area, so I found myself trying desperately to “quiet the loins’ so to speak. Every guy out there knows exactly what I’m talking about. Let me tell you that there is nothing more embarrassing than being at half-mast in front of an oblivious nurse.

Well, I’ve now doomed myself to being called “Nipple boy” for the rest of my life. Oh well, it’s the price I pay for baring my soul to the Internet. Just a hint boys, there is nothing better for “calming the loins” than rubbing alcohol on a fresh incision. Try it next time, the girls will love it.

That’s about it for today. Who knows what I’ll have for tomorrow, it might be sad, it might be happy, but like I promised myself from the start of this project, it will all be the true me. I might think about toning down the sexual references in the future, but honestly, this is the most fun I’ve had writing one of these. See you tomorrow.

Chemo Day 1 - Part 2

Well, I had a nap and ate some awesome turkey soup and cabbage rolls courtesy of Shirley and Wayne Sands with some of Shannon Cooper’s homemade bread for dippin’ so I’m feeling up to writing some more. I’m also clean for the first time in two days since I was not allowed to shower with the gauze bandage on my central line. All in all, this is better than I’ve felt in a while. I must admit that I don’t have a pre-determined topic for this entry, but I had the need to do something productive. I’m also completely stumped on one level of Super Mario Sunshine so I’ve given myself a self-imposed time-out from the Evil Box of Addictive Death. If anyone can give me any advice on how to get past Ricco Harbor - Yoshi's Fruit Adventure I would be in your debt forever.

There is one thing I forgot to mention about today’s chemo session. I guess I wasn’t able to put things into words this afternoon regarding watching bio-hazardous materials drip into my body. I recall the nurse getting into full protective gear to administer the Fludarabine. She said it was a precaution in order to protect herself if it happened to spill. So, if I understand this correctly, the stuff floating around INSIDE my body is apparently hazardous to the touch. I don’t know about you, but that leaves me a bit concerned. Another disturbing fact I neglected to mention is that the chemotherapy was not at body temperature when it entered my central line. I was able to feel the cold liquid travel through my vein and into my heart. It was almost exactly like a cold beverage on a warm summers day when you can feel the liquid hit your stomach. This unfortunately was significantly higher on the creepy scale.

Actually, I do know what today’s topic is. It’s about the people I care about who are not able to see me for a few months. I’ve been living day to day for the last few months, and I guess I hadn’t fully grasped the full ramifications of being immuno-suppressed. My youngest nephew Presley (Shannon and Troy’s kid) is scheduled to have a chicken pox vaccination in the next little while. Unfortunately, the vaccine contains live viruses, which means that he, and his entire family are forbidden from seeing me for three months. That means Christmas as well. Presley is only one year old so he and I haven’t gotten to know him as well as I would like, but I have fallen madly, totally and completely in love with Hailey (Shannon and Troy’s older daughter). She’s a little over three years old and we’ve developed this special bond that I can’t quite explain. It’s the same with Heather and Marco’s son Mateo who is about the same age. Nothing makes me happier than getting down on the ground and playing with them. Maybe it’s the laugh that only 3 year olds can make, maybe it’s the way they see everything in the world as a new discovery, but when I play with them, my problems disappear and the world becomes a simple, beautiful existence. Anyway, the realization set in this evening when Shannon phoned me. I guess they were trying to explain to Hailey where I would be going and how long I would be gone. The first words out of her mouth were “I’m really going to miss him”.

Now, I’ve had a few great relationships in my life that have ended badly. I’ve also experienced the loss of loved ones, but I think I died a little today when I spoke to Hailey on the phone.

“I’ll miss you Uncle Adam”

“I love you Uncle Adam”

Tonight was hard…very hard.

Chemo Day 1

So, it’s 12:30pm and I just got back from my first round of chemo. My central line is looking good and it feels much better today. It still hurts, but I’m able to function without any Tylenol 3’s which makes me happy because Tylenol 3’s cause constipation. My brain is slowly turning to mush however, as I forgot all of my daily medication at the hospital. As I type this Jim and Sandi (In-laws) are on their way back to the hospital to get them for me. This is actually quite fitting since I wanted today’s topic to be about support and the people who have stepped up to the plate to help out.

I’ve always valued my independence, and I will admit to seeing my grandparents in the nursing home and thinking how glad I was to be in control of my own life. I always said that if I ever ceased to be able to take care of myself I would rent a plane and go skydiving without a parachute. There’s never a plane around when you need one is there….

Anyway, I know things are going to get much worse before they get better and I’m slowly coming to the realization that help is one of the greatest gifts one person can give another. Caity and I are way over our heads with newborn twins and this whole transplant thing, and if it wasn’t for people like Jim and Sandi Price and my mom, I’m not sure where we’d be right now.

I’m going to start with my mom first. She’s already been up here to help with our move into the new house and she single-handedly cleaned the old house, which was a horrible, horrible two-day job that Caity and I were dreading. She went home about two weeks ago because the twins were still in the hospital and there was nothing for her to do. She’s planning on coming back up on November 11^th to help Caity out with the twins and I think she’s staying until I’m able to function on my own. For those of you more doped up than I am right now, that is a three to six month commitment. I know she’s my mom, but I’m still amazed at how quickly she volunteered her services without giving the slightest consideration to her own life. She and Dave just bought a new house in Halliburton and are renovating, plus it’s her first year of retirement. I must admit that I’m feeling rather guilty for taking her away from what is supposed to be her down time.

Now on to Jim and Sandi. I can’t remember a single day since I’ve known them that I haven’t felt like a part of the family. Their love and support has been unconditional and I can honestly say that Caity and I would not be in this beautiful city right now if it wasn’t for their extreme generosity with their time, money, and continuous help. If I were to list all the times they have come to our rescue, we’d exceed the maximum storage capacity for Jim’s website. Right now they are living at our house for the time being to help with the house, the twins, and providing emotional, not to mention vehicular support with my daily hospital visits. I’m not sure if I mentioned this, but several of my medications are making me quite stupid, so I need a chaperone anytime I need to go anywhere. Since Caity is physically attached to the babies food supply, that leaves Jim and Sandi to do all the shuttle work to and from the hospital (two hour round trip not counting time spent in the hospital).

I wish there was a way to adequately thank them for everything they’ve done for me. Ask any of their children or friends and I’m sure they would say the same regarding everything that Jim and Sandi have done for them. If everyone was to find a way to pay them back for all their help and support, I’m sure they would be the richest people on the face of the earth. My only wish is that Caity and I can become half the parents they were, and are to their kids and extended family.

If you read that last part about Jim and Sandi, then hopefully you’ll understand why I chose to take their last name when Caity and I got married. A lot of people have questioned my reasoning behind the whole name change, and some actually think it was a personal slight against my father who adopted me when I was very young. All I can say to that is that without my father’s upbringing, I would be doubting my chances at survival right now. He is the one who taught me about strength, dedication, and belief in my own abilities and I can honestly say that he is the reason I’m the tough sonofabitch I am today. I know I don’t tell him enough, but I truly love him dearly and rely on his strength to get me through a lot of my life’s little (or big) hurdles. I just wish I were more able to tell him that in person.

Speaking of love and support, I hope nobody minds that Jim and I have been posting your emails to the website. Our friend Nancy came up with the idea and I think it’s a fantastic addition to the journal. Speaking of additions, now that I’m on the heavy chemo, I’ve decided to include with every journal entry, my blood levels, and current medications. This is for those clinical types who enjoy the little details that will rule my life for the next six months. My blood work today was still normal today since nothing significant s happened yet, but tomorrow’s numbers should show a drop in my levels. It looks like I’ve got a couple more days with the twins and my lovely wife before my counts fall low enough to require full time hospitalization.

There has been some debate as to whether or not I’m getting a phone in my room since the cost is very prohibitive. I’ll start getting severe mouth sores in a week due to the chemo as well, and I’ve been told that talking and eating are going to be a constant adventure in new levels of pain yet to be discovered. Think of having canker sores that cover the inside of your mouth and tongue and go all the way down to your stomach. They’ve got a public phone in the lounge that I can use to call home and check messages, and I’ll have my email as well but chances are I’ll have just enough energy to do the journal and not much else. Well, we’ll see. After all I am one tough sonofabitch!!!

Bringing you up to speed

Well look at that. I’m already late on my journal entries. I’ll make it up today by talking about quite a few topics one of which will be the procedure I had today to install the central line. But first I need to catch up from yesterday regarding how I was diagnosed and all the things that have lead me up to the brutal pain in my upper chest and shoulder that I am now feeling.

I guess it was the beginning of April of 2003 where I first figured out that something was not quite right inside of me. I was working for a company called El Paso Oil and Gas on the 7^th floor of the Petrol Canada building in Calgary. At lunchtime I would run the stairs of the building since it was too cold for a run outside. The building was 47 floors of usable staircase. I was up to 2 “laps” of the stairs by then. Id feel exhausted after my workout but I figured it was simply the fact that I was climbing about 100 flights of stairs every second lunch hour. After a while I could barely manage one lap and I simply figured that I was overworking myself. We had a Chinook in Calgary after that and Caity and I tried going for a jog at lunch hour together. Now Caity is a fit girl, so I figured that she’d give me a good run for my money, but she was literally having to stop and wait for me every 5 minutes or so. Once again I figured that I was just overdoing things and left it at that.

Around the same time Caity and I decided to redo the floors in our rental house. It had old peel and stick tiles on the floor that were slowly starting to unstick, and we discovered underneath the tile was hardwood flooring. So we proceeded to rip up the tile and plywood and refinish the wood underneath. In the process of doing that I hit my shin with a hammer. I got a bruise from the hit, but come on, why wouldn’t I bruise, it was a hammer after all right? Problem is I can’t remember the last time I had a bruise, hammer hit or not.

On Easter weekend I came down with a mysterious fever, which included massive amounts of fluids exiting my body from both orifices. I got the same thing again a few weeks later but coincidently I had eaten Dairy Queen products before both fevers. I figured that the Dairy Queen I went to was not terribly concerned with hygiene so I vowed to stop eating there. I still to this day get a little queasy when I see a Dairy Queen.

Well, I started feeling worse overall and finally made the call to get a family doctor and get a checkup. I found a new clinic opening up and made an appointment, which is incredibly lucky considering the doctor shortage that Calgary has been experiencing for the longest time. First on the list was a history and bloodwork since I hadn’t been to a doctor in over 5 years. Come on, I’m a guy, we don’t get sick right? I had to fast the night before my blood work and I don’t deal well with lack of food in the slightest. I woke up in the morning to discover that Calgary’s ever-consistent weather had dumped over 30 centimeters of snow on the ground. There was no way in hell that I was going to fast again and our car has traction control so off I ventured into the unforgiving weather

An hour and a half later I made it to the lab, which is 5 minutes away from our house in good weather. On the way there I was almost hit by a bus and 5 other idiots in SUV’s who thought they could drive in a blizzard. There was no lineup at the clinic so I was in and out within 5 minutes. Another hour later and I was back home binge eating to my hearts content. That’s when the phone call came.

“Mr. Price?”

“Yes”

“We need you to come down to the doctors office right away”

“Why?”

“We can’t discuss that over the phone, but it is rather urgent that you come down immediately”

“Are you kidding me? Have you seen the weather out there?”

“Right now Mr. Price. You must come right now”

So Caity and I bundled up and braved the roads again to head to the doctors office. Within 5 minutes at the doctors I was told that my white blood cell count was 270,000 (normal is 7-10 thousand) and my spleen had grown down to my hip bone and was in danger of popping. The family doctor was hesitant to make a diagnosis other than “some kind of blood cancer. We were also informed that we already had a room reserved At the Peter Lougheed Hospital and we were to go there immediately. Shock is an understatement for what we were feeling that day as we slipped and slide our way to the hospital. We were ushered through the emergency room and into a room where I would experience my first bone marrow biopsy.

Now, about the bone marrow biopsy. It is the worst feeling I have ever felt. The basic procedure is to take a big F**king needle and jam it into your hipbone right above a butt cheek. Than the needle gets twisted and ground into the bone until it penetrates the outer bone and hits the soft marrow. Now with that big needle in the marrow, suction is applied and the bone marrow is sucked out. It’s the suction that’s the worst part. I can only describe the sensation as A BIG F**KING NEEDLE SUCKING OUT YOUR BONE MARROW!!!!. And that’s about it. It also hurts for about two days afterward and the nurses seem to have the need to capture the most possible back hair under the bandage as possible to make ripping it off that much more enjoyable.

After a couple of days in the hospital it was confirmed that I indeed had Chronic Myeloid Leukemia. There are other forms of Leukemia you could get but luckily CML is one of the less aggressive forms. Lucky me huh? At least I didn’t have to lose a nut like someone else I know J. The treatment from then on was a drug regimen that consisted of Hydroxyurea (a general blood cell killer to bring down my counts) and Allopurinol (to protect my kidneys from the increased waste being generated from all the dead blood cells). I stayed on various doses of that for three months and then switched to a wonder drug called Gleevec.

Now, even though Gleevec didn’t work for me it is one of the latest cancer fighting drugs on the market. It actively targets the cancer cells and leaves the rest of me alone. I just want to publicly thank the Novartis drug company for giving me the time to create my two bundles of perfection. Without Gleevec I would have needed the transplant much sooner and would likely never have been able to reproduce.

Gleevec is hugely successful in 99% of those who take it. It has actually been known to produce complete remission is a few of those who take it. I happen to be the 1% that it didn’t work on. It brought my leukemia cells down to 12% of total (Leukemia cells were 100% at the time of diagnosis), but my doctor was expecting 0%. 0 percent does not mean remission in this case since the body can be Leukemia free and still WANT to produce more Leukemia cells. In my case, the Leukemia was proving resistant to the treatment and had the potential to become more aggressive in the near future. A bone marrow transplant at this stage has a success rate of about 70% while the success rate of a more advance Leukemia is about 10% to 15%.

So that brings us up to today. Please keep in mind that what you’ve read so far is a very simplistic view of what Caity and I have gone through. If you want more info about the actual biology behind Leukemias or their treatment, there are a lot of books out there written by doctors. I am not a doctor. I’m also on a heavy dose of Dilantin and Tylenol 3’s so if your looking for more details regarding anything you’ve read, call me in a year, or go buy a book. I can however suggest several websites that were instrumental in preparing me for what was to come.

Anyway, like I promised somewhere in this entry I’ll talk about my central line insertion that happened earlier this morning. I now have a tube that enters my body about 2 inches above my right nipple, snakes under the skin to above my collarbone, and takes a left turn into a vein that leads directly to my heart. And yes, for those who were wondering about my nervousness from yesterday, I did it with nothing but local anesthetic. Currently I feel like I’ve been shot in the shoulder with a high-powered rifle. I can however say that I now know why everyone loves Tylenol 3. It’s my new best friend. It still hurts to do most head and neck movements and I had to ride home from the hospital holding the seatbelt away from my body, but the pain is nothing like it was before.

I want to send out a sincere thank you to Ted Parker and Wayne Sands who phoned me last night regarding my fear of the central line procedure. Both of you really helped me out last night and I made it through the procedure mainly based on the courage you gave me.

Well, the next round of Tylenol 3 and Dilantin is kicking in and I’m having trouble concentrating or hitting the right keys on the keyboard. I’m going to go, put my feet up and watch M.A.S.H. re-runs on TV. Tomorrow I’ve got my first round of chemo so tune in tomorrow for my thoughts on that. Same cancer time, same cancer channel.

First Post

My name is Adam Price and I have Leukemia.

This is the part where everyone says "Hi Adam" in unison. Sorry, bad joke,
but this online journal is a kind of therapy so I figure it applies here. A
word of warning to those who don't know me. My main coping mechanisms are
bad humor and complete and utter denial so don't expect anything worthy of
the Pulitzer price in this.

I was diagnosed with Chronic Myeloid Leukemia in late April of 2003. It's a
pretty scary sounding cancer but to be perfectly honest, up until recently
it hasn't impacted me very much. I've been to the doctor more times
than I can remember, and I've cost the Alberta Health Care system almost
50,000 dollars in drugs, but other than it's been business a usual.

My last bone marrow biopsy confirmed that the drug therapy I was on was not
completely effective in fighting the cancer and I made the choice to have a
bone marrow transplant. For those of you who don't know me very well I'd
like to point out that in the last month Caity and I have just moved into
our first new home and my lovely wife Caity also gave birth to two of the
most beautiful girls I have ever seen. I'd like to share some words of
advice before we get into the meat of things here.

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.

That being said, I think that because of everything I just mentioned above,
I'm better prepared for the stress of being sick. I've eaten so many Tums
in the last month that I was starting to consider it a food group. The
funny thing is that now that the twins are born and we're moved in, I feel
much better than I thought I would seeing as I'll be going through hell and
back in just under a week. I've heard from more than one source that a bone
marrow transplant is kind of like having the worst flu you've ever had for a
full year. Well, we'll find out how hard it is in a little while. In the
meantime there's a lot of preparation that needs to be done before the
transplant can take place. I've still got to get my central line put in,
and the week of chemo before I get any new bone marrow.

I'll go into more detail about the chemotherapy as it happens. As for the
central line, I need to discuss this one a little if you will indulge me.
The central line is an IV in your shoulder area that taps directly into the
inferior vena cava. Instead of poking me every time they need to take blood
or give me drugs the central line allows them to poke me at will without
damaging my veins. I'm not sure why but I'm more nervous about the central
line than anything else. Maybe it's the visual of these tubes sticking out
of my upper chest that I'm not crazy about. I really wish I could explain
the apprehension associated with the whole central line procedure but it
sure is the one thing that has got me stressed right now. The central line
goes in on Tuesday so check back on Wednesday to see how I did. I think I'm
going to get just a local for the procedure so I can give you all the gory
details first hand.

Well, it's 1:30 am and unless I want to sleep my last normal day in bed
sleeping, I should go to bed. Tomorrow I figure I'll cover how I was
diagnosed and all the various procedures and drugs I've had in the last year
and a half.

Goodnight Everyone.