Friday, December 31, 2004
Day +51 Happy New Year
And Happy New Hair to me. I've got the wispy new baby hair starting on my
head, so I'm taking that as a good sign. I can't remember if my last entry
was a happy one or a sad one so I'm going to sit on the fence for this one.
There's some sad, some happy, and some angry, so here comes the roller
coaster.
I've been riding an "almost" fever for half a day now and I'm scared that
I'm slipping into the Graft vs Host thing. I was doing so well, and then
this morning I woke up with a sore lymph node. I haven't really gotten off
the starting blocks today and it's already the new year in Ontario. It's
most likely just a little bug that I will fight away with my limping immune
system, but I can't help but think about another round in the hospital. It
really is hard to separate the logic from the irrationality of emotion. I'm
trying to be smart about this. I mean, I'm just tired, and my lymph node
doesn't hurt anymore, but I am having trouble not being panicky. How am I
going to go through life if I retreat into a bubble every time I get a
sniffle?
I'm starting to feel fragile as well. I can't really describe what changed
to cause big indestructible Adam into, nervous wreck in any public situation
with more than two people Adam. Caity and I have been living a life of
cancer and babies for so long that if you can't converse with us on those
two topics, you're screwed. Case in point, we had John, Jen, Amy and Ryan
over for chocolate covered bananas with sprinkles and I felt completely left
out of everything. I was nobody's fault, but I just felt like I was an
outsider that didn't quite fit it. When we talked about cancer I was fine.
When we talked about babies I was fine. But I don't have a life outside of
that and this was made very clear to me that night. I love all four of
those above -mentioned people, but I was unable to enjoy the night to the
fullest due to whatever this mental funk is. I really do have a full-time
job as a parent/cancer patient and it shows.
On a happier note, my babies are adorable. They're crying and generally
carrying on right now upstairs, but we're in Canmore, and the Supermom trio
is in full force, so I'm taking advantage of it. They seem to be changing
every day, and all the crying and bad sleep all gets forgotten when I get a
smile from one of them. There are times when I think about making a series
of videos for them in later life. Kind of like the movie "My Life" starring
Michael Keaton as a terminally ill cancer patient. Two problems, I don't
own a video camera, and I'm too lazy right now.
Speaking of cancer patients, Caity and I did a neat thing for Christmas. We
bought a TV/DVD combo, and some DVD's and donated them to the Tom Baker's
Unit 57. My brother threw in a Playstation 2 and the nurses put the entire
thing on a portable cart. It is Caity's and my desire to add to the cart
every little while, so that people who can't get out of bed in Unit 57 can
have something to do. If I had the money, I'd buy out the current TV
contract the Tom Baker has and give everyone free TV while they are there.
It cost me almost 300 dollars for one month of TV and phone in my hospital
room, and I think that is just highway robbery. Whoever runs the TV/phone
department, needs to pull their head out of their ass and realize that
cancer patients just might deserve a few breaks in life.
I think I need to go to my shrink. This whole journal thing is great, but
I'm really starting to feel myself fall in to an emotional pit and I want to
pull myself out before they need to throw me a rope. I've never been fond
of psychiatrists, but I think that I'm just going to have to go for it. I
t5hink if I was female, I wouldn't even be typing this. Why are males so
stubborn and stupid when it comes to doctors and hospitals? I've never had
anything but great care in the hospital, and the head shrinker isn't even
going to give me chemotherapy, so why am I nervous? Hell, all this is going
out on the internet to strangers and I'm sitting here concerned about
talking to someone who is under a legal obligation to keep everything I say
a secret. See, this is why I'm going nuts.
Ok, I'm done or tonight. Have a great new year everyone. Let's hope that
Caity and I never EVER have a year like this again.
Good Bye 2004. You gave me a lot to think about.
Wednesday, December 22, 2004
Day +42 Missing the Mary Jane
help with nausea) and my steroid dosage was dropped again. I feel like a
heroin addict coming down off a high. I'm really shaky, and my body can't
figure out whether to sweat profusely or shake in uncontrollable chills. I've
found that the only place I feel comfortable is in the shower lying in the
bath and letting the water hit me from above.
The appetite is down as well. My mom says I should not worry because I'm
starting to eat like a normal, inactive person. I did have some fresh
tomatoes with dinner today, but I had to wash them with dish soap to clean
the skin. I've never washed produce with dish soap before and I am positive
that the lemon fresh scent of Sunlight does not mix well with Sun dried
Tomato and Oregano salad dressing.
Another negative part of today was that Caity discovered that I'm not
actually growing hair. The stubble that I had on my head has started to
fall out with light rubbing so it looks like I'll be bald for a while. I
know I haven't expressed much of a concern for my hair, but it really is one
of the most visual signs that I'm sick. The only other part of me that I
hate to look at is the central line, but I've gotten used to that, and I
know that it'll be gone in a month. It's the hair that's bugging me, but
I've found that shampooing with a anti-dandruff shampoo helps a bit wit23 h the
humour aspect.
Today I'm done with feeling bad. I want it to end. I'm not having the fun
I used to and I'm finding that it's harder to smile and joke about what's
happening. I don't have the energy to take care of my own kids and I'm
tired of being tired. Sorry for the sourness of this entry, but today is
not a happy day, so this is what you get. If it weren't for the fact that
it was Christmas, I might consider going back to the hospital and sleeping
there. I have this worried feeling that something is not right, and I'm
just sitting here at home oblivious to the fact that I'm slowly dying and
the doctors at the Tom Baker could be doing something right now if I was
there.
Anyway, sorry again for the entry, but if I'm going to write about the good
times, I've got to write about the bad times. I think that I'm going to
give back the book Maureen (the shrink) gave me. The guy who wrote it
climbed Everest, then got Acute Myeloid Leukemia. That's one level higher
than I got, but the guy writes like every day was glorious. His wife cooked
all of his meals and spend 14 hours a day at the hospital. He also rode the
stationary bike at Unit 57 for hours and reading the book generally made me
feel like shit. I basically just lay there and typed in the hospital and
here is this guy riding and energetic, and happy. I don't want to be a
bastard here but after reading the first 50 pages about how positive and
happy and strong this guy is I want in my heart to yell out a huge "FUCK
YOU" for making me feel like a second class cancer patient. I guess I'll
come back to the book in a while, but it was not doing much for my morale.
He is a very good writer though, and his wife wrote every second chapter so
I guess that's a slight fuck you to Caity and her ever looming and still
unpresent journal entry. Well, we do have twins and mountain boy just had
his wife, and I would never, ever, question Caity's dedication to her kids
and me. She is beyond any criticism, comment, or complaint in my eyes and I
would take her over any home cooked 14 hour day hospital visiting super
wife.
That's about as much negative energy as I'm willing to vent in one sitting so
I'm going to bed. I've been there most of the day, but it's time to take
the medications and hit the sack. I'm really fighting the urge to take a
Nabilone, but I will also never allow myself to bend to a craving.
Now that's a joke!!!!
Goodnight, and thanks. I feel a bit better getting that off my chest
Monday, December 20, 2004
Day +40 A Colony of Doctors
levels are holding and other than some low potassium levels I'm ok. I
actually got a good sleep at the hospital while the potassium was dripping
into me.
I noticed a neat relationship between ants and doctors. Please understand
that I hold no disrespect for any doctor I've ever met, I just happen to
notice that you act collectively like a ant farm.
Let me explain.
At first I'm sitting in a room by myself. After a short time a younger
doctor (scout ant) comes in, asks some questions and leaves. You wait for a
little while longer, and all of a sudden, doctors are coming out of the walls.
There is a steady stream of doctors entering the room who are most likely
following the scent trail left by the first scout doctor. Like ants, they
attack in groups so that even if you take out a few of them, there are more
to take their place. There are younger "worker doctors" flanking the
"soldier doctors" swarming around my room. They're up my shirt, in my ear,
up my nose. I'm surprised that I haven't been carried away yet since
doctors, like ants possess super strength. I'm sure there must be a "queen
doctor" living in the dark basement of the Foothills Hospital pumping out
worker doctors and such, but I'm not strong enough right now to go exploring
in the Foothills basement, and I don't think I would go unless I had one of
those exo-skeletons like Ripley had when she kicked the holy crap out of the
Queen Alien in the movie "Aliens".
I'm not sure if I'm done being silly, but I'm not done writing so lets
continue.
For those of you concerned about my lower GI tract, I have good news. The
pipes are working in perfect order now. We've survived dairy products,
fruit, and my homemade chili. I actually went and had a Wendy's Spicy
Chicken sandwich today. I'll keep you posted to see how long that one stays
in me. As for everything else, the insomnia is still around, but we've
switched up my anti-nausea meds, and lowered my steroid levels so that might
help.
I think that I'm starting to get used to the decreased energy. I was told
to expect a "mourning" period regarding my activity levels. I fought it for
a while, but I think that was making my short fuse shorter. I've seemed to
come to terms with the fact that I'm not going to be 100% for at least six
months, and I seem to enjoy the quieter times in life more. I love cuddling
my babies, and I find myself contemplating life and daydreaming about the
summer, my 30th birthday in February, Christmas, etc. I've been changed by
this experience, and I'm not sure what the final person will be like, but
I'm starting to get to know him, and he's not too bad. He seems to take
more pleasure in the simple things in life, and it's a refreshing way to
live, rather than bitching and whining about what you don't have, or how
life continues to deny me my motorcycle that I so obviously deserve.
While I'm thinking about it, I have some advice to future residents of Unit
57 in the Tom Baker Cancer Centre. Get yourself a cool necklace. Your
central line will need to be supported by a tie around your neck so there
is no pulling on the insertion point, but the Tom Baker gives you the
equivalent of a white shoelace that you safety pin your central line ports
to. This white shoelace will stick out of every shirt you own, and it looks
like it's from a hospital. I just got in the mail an awesome necklace made
by one of my best friends, Jen McAllister(Jen Morrison). It's a shell
necklace that has orange tinted shells. Orange by the way is the colour
that represents blood and bone cancer so the necklace is even more
meaningful. But I'm serious, if you've got a central line, get every bit of
medical junk off of there that you can. You'll feel so much better. It's
bad enough to look in the mirror every day and see the bald head, the skinny
legs, the sunken eyes, but you don't need a whole bunch of medical junk
hanging off your neck.
Oh, I remember what made me laugh in the Tom Baker today. I was walking out
of the bone marrow transplant department, and I had to walk by the waiting
room for the main ground floor area. Now, this is a big room, and at any
one time, there are about 30 people waiting. Well, the place was packed
today, and the one TV in the corner of the room had been turned to the
Westminster Dog Show or whatever that dog show is. Now, cancer patients
don't look like a very happy bunch, but you could tell that whoever had
changed the channel to the dog show was done and gone, and everyone else was
staring at the damn dog show simply because we've all read everything in the
waiting room. I felt so bad for everyone there, but at the same time,
nobody had the guts to stand up and change the channel. I find that TV's in
the Tom Baker are usually tuned to strange things. The CT Scan room usually
has the shopping channel, and I've seen the weather channel on more than
once in X-ray. I'm guessing it's a motivational thing for the patients.
They get so tired of the shit TV that they make a quicker recovery. I also
heard a rumor that "CODE MAUVE" is actually hospital code to warn hospital
staff of upcoming quality television programming about to appear on a public
TV so that they can change the channel to something more mind numbing.
So, just take this entry with a grain of salt if you find anything
insulting. I love the doctors, I love the Tom Baker, I just found today
rather like a Seinfeld episode. Weird observations about life were
everywhere. The Tom Baker really is a fantastic place, and I owe them
everything, but today was damn funny.
Oh, and if you drive a black Lexus, you're balding, and you like to have
full volume arguments on your cell phone headset as you burrow your way
through traffic on 16th Ave at stupid speeds let me give you some advice
about today.
I make YOU look unhealthy right now. You really need to relax.
Friday, December 17, 2004
Day +37 Steroids and Temper
stuff. Life has been great the past week. I am slowly getting used to the
new habits of my daughters, and my energy seems to be holding in there. I
have to take a breather every once and a while after a big walk, but I
successfully did a light mountain hike (really light) with my daughter Ara
in a snuggly. The grand parents wouldn't let me go out without two ski
poles for support, but I did the whole walk.
For those of you who don't know, my sister-in-law Shannon will be running a
marathon in Anchorage Alaska in June to raise money for Leukemia research.
My journal caught the eye of one of the team's organizers, and she asked if
the team could run in my name.
Now, bear with me because this is a blatant cash grab here on my part for
what I believe to be a pretty good cause. The team's goal is to raise
39,000.00 for the Leukemia and Lymphoma Society. These 7 people are busting
their asses to help out strangers like me, and if you would like to provide
a donation to them in any form, please email them at this address.
hlmc@telusplanet.net
Their next events are a lottery featuring gifts and donations from various
Calgary businesses (gift certificates and prize donations are also greatly
appreciated), and a fund raising dinner at a Calgary restaurant called
Mykonos on January 18th. Dinner is 30 dollars per adult, and I'm going to
be there so why not come down for the evening. Give me or Shelley Herman
(the email address above) a buzz and we'll hook you up. Mykonos is a Greek
restaurant that kicks a whole bunch of ass so why not make the trip. If you
ask nicely, Caity and I might even bring the twins!!!!!
No joking aside, I've met two of the organizers of the marathon team and
they, like Mykonos kick a whole bunch of ass. I know that everyone out
there has a particular charitable organization that touches them
emotionally, and I am no different. That is why I will continue to mention
them in my web journal so get used to hearing about their progress.
Lets talk about energy now. For anyone going through what I went through,
be prepared for a huge boost in energy when the steroids kick in. The only
problem is that this is a false energy. It doesn't actually exist according
to the doctors at the Tom Baker, and I have to learn to stop before I get
too tired doing any one thing. It's hard to control your activity levels
when you spent the better part of November on your back. I just want to go,
go, go, but I'm still unprepared for how quickly and abruptly my body lets
me know that it's tired. I don't get tired slowly, it's more like a sudden,
abrupt stop in any energy output whatsoever. Follow that by periods of food
cravings that (I've been told) can be compared to a pregnant woman. Oh, and
don't forget the insomnia that we're currently experiencing, and you've got
the entire package.
sort of.
I've got one big problem that I'm having a bit of difficulty with. The
drugs I'm on are causing me to have the temper of a 2 year old. I've always
been a cool head, with the exception of sudden, abrupt pain like a stubbed
toe causing me to get pretty mad, pretty quick. I've found lately that
every annoyance is like a stubbed toe. The anger comes on so strong and
quick that it's sometimes all I can do to stop myself from punching a wall.
Caity and I talked about my rage relating to the kids, and I will admit that
I've had to put down a child and walk away for fear of doing something I'd
regret. You don't have to email me about that little bit, because it's the
last I'm going to talk about it. I am not happy about being called a
potential danger to my children by a team of doctors. I am also not happy
about Caity carrying around anti-psychotic pills in case I go off the deep
end. My levels of steroids were dropped on Monday, and I have noticed a
cooling off so to speak regarding the anger so I'm guessing that as the
steroids come down, my rage, and my false energy will dissipate. Besides,
Caity and I have re-discovered an old way to blow off steam, so I doubt
you'll be reading about me in another newspaper article about how I went
nuts and killed my whole family.
So that's it about the anger, agreed? I normally would open the floor to
any discussion, advice, help etc, but I really want to keep the historical
records of this part to a minimum. It's being dealt with, and I'm very
embarrassed about it so that's it.
Just so everyone knows, I had a great day today. In the past 24 hours I've
broken two major rules the Tom Baker gave me. The first one is my secret,
the second one I will share with you.
Caity and I had a date at one of our favorite restaurants, Chez Francois (Canmore).
They did our catering when we had our wedding and I am never disappointed
when I go there to eat. My god is the food good there. Anyway, I was told
to stay away from restaurants because I can't see if the food is being
prepared properly. Well, aside from a waiter with limited English who had
no idea what "immuno-suppressed" meant, the food and the dining experience
was one of the best I've had. We were also the only ones in the restaurant,
so contact with bugs and germs was at a minimum (5:00pm on a Thursday
afternoon, so the emptiness was no reflection on the quality of the food).
Aside from the physical enjoyment of eating, I think it was the first time I
had been out in public without worrying about germs. Caity and I had the
world to ourselves for two whole hours and for a brief period of time, I was
normal. I wasn't a new dad, I wasn't a cancer survivor, I was on a date
with the woman I love.
I have some other advice for anyone in my shoes. Get your ass back into as
many emotional relationships as possible. Allow yourself to cry at those
damn Canadian Tire Christmas commercials, get in an argument with someone
who pisses you off. Find whatever makes you blow emotionally and keep on
doing it. I think one of the side effects of cancer treatment is that you
retreat into yourself. I never realized it, but I was so into my own fight
that I turned off any other emotions. I'm letting myself cry, letting
myself laugh at anything that I find funny. Do whatever you want. If
you're embarrassed about doing something weird or silly think back to a time
when you were so sick, you didn't even notice a nurse prepping you for an
enema in the hospital. Then re-think why you aren't doing what you need to
do.
Now, if killing small puppies is your thing, I would suggest a different
hobby to let off steam. There are still some things in this world that do
not qualify for therapy and I figure that if chiropractic care is STILL not
fully covered by insurance or Blue Cross here in Alberta, puppy beating has a
long way to go before it hits the mainstream. All I'm saying is find what
works for you and find it quickly. I'm kicking myself for not doing it
sooner.
So, with insomnia still baring it's teeth I shall continue.
Actually, it's been a while since I checked out Rob Glatts's page so I'm off
to be the reader, not the writer. My next doctor's appointment is on
Monday, so I'll have another entry up by then. Oh, and Caity should have an
entry in here soon about her experiences with me in the hospital and
everything else. She's been promising to do this for a while, but her time
is rather limited so I'm not upset.
If there's anything that anyone wants to know, I'm taking requests now.
Since the medical info is slow now, I figure that I can open up the floor to
questions and that will give me the topic to write about. I've forgotten a
lot about what happened in the hospital, but I've got enough people out here
to fill in any blanks I can't remember. Don't feel shy about emailing if
you have a question, since I love to write in this thing. I'm just running
out of topics.
That's it. Remember, give Shelley an email if you can help out a great
cause. In any case, have a good night.
Saturday, December 11, 2004
Day +31 Letter to My Donor
>
> Hi There;
> happy news. So far, it looks like all of your hard work and pain are living
> within me quite successfully. I was amazed when I saw the amount of marrow
> you gave me. I've had a few bone marrow biopsies in my time, and I can't
> imagine how much that hurt to get all that marrow out of you.
>
> I really wish that I could convey how special your gift of bone marrow was
> to me. You really have no idea what kind of positive effect you have had on
> me and my family. I hope that one day, I will be able to provide more
> information regarding how great your gift is. But for right now, all I can
> say is that I'm doing great, and I have been discharged from the hospital
> and am living at home. I would love to say that life is returning to
> normal, but until the shock of being alive wears off, I think I will
> refrain from labeling anything as normal.
>
> I do have a strange question for you that I am hoping will make it past the
> bone marrow letter police; "do you enjoy fruit?" The reason that I ask, is
> I've always been a meat and potatoes kind of person, and all I can think
> about these days are fruits and vegetables, so I'm wondering if I've picked
> up on any of your eating habits. I'm not sure how legitimate the science is
> behind the effects of a bone marrow transplant on appetite and taste, but
> there has been a dramatic shift in my food preferences so I thought I'd ask.
>
> Anyway, I've got to go. Please keep in touch, as nothing would please me
> more than being able to one day travel to wherever you are and shake your
> hand. You've saved my life, and I want you to know that I am forever in
> your debt.
Day +31 There is no "I" in Team
> has been rolling along at a busy pace over here and it's taken me a while to
> get used to my new role as a parent again. It was quite intimidating to
> walk into my own house and witness the sheer mom perfection that was the
> team of Caity, Sandi (Caity's mom), and Elli (my mom). They were a well-oiled machine that was
> processing babies at an alarming rate and it was all I could do there for a
> while to sit back and watch the process. Sandi has gone home and it sounds
> like my mom is gone as of Jan 6th. I was a bit worried at first about
> being left with a strange wife and strange babies in a strange house, but
> now that I'm finding that my strength coming back, I'm not so worried
> anymore. I was really concerned that I would be baby #3 on Caity's care
> list so the fact that I'm getting stronger is a real positive impact on my
> mental state.
>
> I wrote a letter to my donor today. I'm not allowed to include any personal
> details so the letter is basically a "thanks for the bone marrow" type of
> thing. Hallmark was coming up short with the funny organ donor cards so I
> had to write my own. It's somewhere in or around this journal entry
> (wherever Jim puts it) so give it a look if you want. On the other hand, if you
> know of any male living in England, Scotland, or one of those Northern
> European countries who just gave bone marrow, pass along this website so
> that he can get a glimpse of how much he has impacted my life.
>
> Medically, I can't really complain about much. I'm still having a bit of
> trouble regulating my temperature at night time. Sandi said it sounded like
> early pregnancy or menopause, but combined with my weird food cravings, and
> increased sense of smell, the joke is that I'm pregnant. That wasn't bone
> marrow the put into me, it was eggs!!!! It's going to be like that scene
> from aliens all over again. OK, most likely not, but I don't remember much
> about what happened to me in the hospital.
>
> I had a talk with Caity a day ago. We really were not feeling like we were
> a team at all so we spent a few hours in the morning just talking. I guess
> there were days that I was in the hospital that I had a lot of people really
> scared. It's hard to really think about how sick I was. I remember not
> feeling well, but Caity has stories of me hallucinating in my hospital bed,
> and twitching and "dancing". She has promised to write an entry with some of
> her more memorable "Adam moments". Hell, up until yesterday, I've been
> yelling at the TV at Ralph Klein (Alberta's premier) about how his stupid
> stand on gay marriage will affect his election results. I found out last
> night that the election was over two weeks ago. I guess he already won the
> election. Congrats Ralphie.... Now how about pulling your head out of your
> ass and realizing that gay marriage is just as legit and should be embraced
> rather than shunned in today's society.
>
> Anyway, on another subject, Caity and I are finding "our team" again, and I no
> longer see her as just the mother of my children. I wish I could really
> explain how easy it is to get inside your own problems and forget about
> others. Caity was so busy with the kids and the house, and I was busy with
> my fight, and I think we forgot that we were husband and wife somewhere
> along the road.
> Well, we're back as a unit and I think that's helping the house more than
> anything. I really do still think that she's the most beautiful person I've
> ever met. I'm just glad I'm getting the chance to get to know her all over
> again.
>
> That's it for today folks. I've got a doctor's appointment on Monday, so
> that will be the next update. Have a great weekend, and if you happen to be
> weightlifting in Okotoks on Sunday morning, I'll see you there tomorrow.
> I'm just coming for a social visit, but I see myself as a blank canvas for
> Bruce to mold into a champion, so I want to make sure he's got all the
> information about me so that we can plan my return to action. I'm not
> allowed to lift anything anyway until my central line comes out so I'm
> still a month away from any weights.
>
> later.
>
>
>
Tuesday, December 7, 2004
Day +27 Bye Bye Unit 57
means that I'm now going to be driving into town everyday to get my meds and
vitals done at the outpatient ward, while spending all my other time at
home.
Right?
Wrong!!!!!!!
I'M TOO HEALTHY FOR THAT BABY!!!!!! I GOT BUMPED RIGHT OUT OF OUTPATIENT
CARE TO THE WEEKLY AND MONTHLY CARE STATUS!!!!! My next hospital visit is
on Thursday. That's right, I shocked the doctors so much with my recovery
that I skipped a grade so to speak. I drove myself to the hospital today,
and I even stopped by the office yesterday to see everyone.
I wish I could describe the love I feel when I walk into my office building.
Maybe it's because the first thing you see is Wendy's beaming smile.
After that, it's really hard to have a bad day. Anyway, I walked into the
office and everyone came out to see me. I picked up some news releases for
changes to the company, and had a great chat with everyone. I know people
out there are saying
"GEEZ ADAM, you've got a goldmine of time off to rest and recuperate and
the first thing you do no more than 10 minutes after they release you from
the hospital yesterday is to go to work"?
Well, yeah it is a bit creepy I guess, but my job is that important to me.
I love the people I work with, I love the people I work for and believe it
or not, I love accounting, and I've learned so much in the past couple
months working with Don. Just getting back into the building and walking
around the office brings a person back to the real world. It's been a while
since I was in the regular person's world, and being at the office yesterday
reminded me of one of the main reasons why I fought so hard to stay alive.
I definitely overdid things a bit yesterday, and paid for it with a nap and
a long sleep in my own bed last night. I think I'm still a little winded
from all the walking yesterday but I'm sure that will go away when my red
blood cells return to normal and I build up some bulk on my body.
Speaking of bulk, I have a pair of stretchy jeans that used to make my
power lifting ass look sooooooooo good. I've got them on and it looks like
I'm wearing painter pants. Such stupid, thin little legs I've got.
Well, since I'm off till Thursday, I will declare a brief rest in the
journals until then. I'm going to spend some time with my girls today, and
kick Caity and the Super-Super-Mom's out of the house for a while. I
declare it to be father-daughter day at the Price household.
Later
Sunday, December 5, 2004
Day +25 - Home
It figures. I'm in here on the verge of getting out and rejoining society,
and it looks like there's a new pill on the market to take over where my
poor little Gleevec failed me the first time. Oh well, I'm actually not mad
at all. I'm very happy to see such huge advances in cancer research and I'm
glad that Leukemia happens to be one of the cancers that they seem to be
blowing large holes in these days.
In fact, I would say that I have valued every day I've spent in here. I
would be far less of a man if I was still just taking a few pills and going
on with my day like a regular human being. I am not a regular human being.
I am a cancer survivor. I never wanted to use that term before since all I
was doing was taking a few pills a day. However, now I have been through a
round of chemo, I have spend over one month in a hospital bed, I have had to
deal with more vomiting and runny shit than most people do in a lifetime,
and I've got another six months of wondering if the procedure worked.
Today I feel I have earned the right to call myself a survivor.
Do you know in the movie the Princess Bride, when Weasley and Buttercup are
surrounded by Humperdink's men after they emerge from the fireswamp? Well,
Leukemia is my fireswamp. I've been through the chemo, I've been through a
lot, and the reason I call myself a survivor is that I KNOW I could do it
all over again if I had to. Don't get me wrong, the Tom Baker is not a
place I'd like to build a summer home in or anything, but I have been tested
by this building and this disease, and I know I have proven something very
important to myself.
I'm 175 pounds today. I entered into this whole thing at about 205 so my
joke about going on the 30 pounds in 30 days weight loss plan seems to have
come true. Instead of the 6 pack abs and the chiseled chest I thought I
would have :-) I seem to have completely lost all the muscle tone in my lower
body. My body went and pulled all of the nutrients it required over the
past month from my muscle tissue instead of my fat. So I've still got some
paunch, but my ass and thighs have completely disappeared. I went to run
upstairs today at home and made it to the tenth step before collapsing on the
second landing for a breather.
For those of you who just caught that last line and are still processing it,
let me type it again.
"I went to run upstairs today AT HOME!!!!!"
That's right people. The reason for my absence is that for the past two
days, I have had a 6 hour day pass at home. I have re-bonded with my kids,
I have cuddled with my wife, and I have eaten very well. My doctor is very
optimistic about sending me home to sleep tomorrow and I am all for it. It
is amazing how much more energized you feel outside of a hospital. I step
out those double sliding doors at the entrance to the Tom Baker Cancer
Centre and although nobody can see it behind the surgical mask, I'm grinning
like an idiot every time. Now that my appetite is back, I can start taking
more medications by mouth. Once I'm more self sufficient and the doctors
decide that I'm ready, I'll be transferred to unit 58b. It's an outpatient
clinic for cancer patients and it's just down the hallway. Patients drive
in every day, and get their meds and vitals checked and then get the hell
out of there. All I know is I can't wait to crawl into bed beside my
wonderful wife and hold her until I fall asleep. My platelets are also
strong enough to support some light weight lifting. Get ready body, you
thought cancer was hard on you, wait till I'm done with you.
Prediction: I will be 225 pounds of solid muscle by next Christmas.
Caity's mom says that I'm perfect just the way that I am. In fact, aside
from the bald head, most people say I look rather normally built for a guy
right now. But, as most of you have already determined, I don't usually let
myself be satisfied with the concept of normal. 2005 will be a rebuilding
year, but wait till you see me then.
Speaking of seeing me in 2005, I want to alert readers to a slight change I
think I might make to the format of this journal. Once I go home, I want to
concentrate my time on re-building what I have lost, so I will be cutting
back on the entries. I will post a couple times a week, but I'm finding
that I have too much drive right now to stick my ass in front of a computer
screen and type for three hours. Those three hours will now be spent
working out, and I will take advantage of the fact that I'll have my kitchen
back again to cook some serious power food.
Now, this timeline only works if I am able to keep the big forms of graft vs
host disease away. Aside from that, it's waiting for my medications to go
away so my new immune system can start fighting on it's own. I do have
white blood cells right now, but they are reduced in effectiveness, by the
immuno-suppressant drugs, so places like offices, malls, movie theatres,
sports stadiums will be dangerous to me until I can fight germs on my own.
Well, that's about it. Here's hoping that this is one of the last times I
find myself alone at a public computer in the patient wing of the Tom Baker
Cancer Centre.
Adam (Survivor) Price
Just a quick note to all you guys. I just got my blood counts from this
morning.
Blood Product Normal Yesterday Today
Red blood cells 130ish 109 109 (needs work)
Platelets 150-500 61 66 (able to shave with a razor now)
White blood cells 4-7 1.2 3.5 YEAH BABY
WBC-Neutrophils over one is good 0.9 2 POINT FUCKING 8 BABY
run around willy nilly with no surgical mask. Everyone is going to see my
smile tomorrow, and I've been given the expressed written permission to kiss
the hell out of my wife. I blew everyone away with today's blood work I
guess, because they've been waiting to tell me ever since I left.
Anyway, I'm off to talk to my beautiful wife in the common room since I let
the cable and phone go in my room. I've also got to go find a non-used TV
around here so I can watch Extreme Home Makeover tonight. My right eye is
still a little blurry, so I can't read the Lance Armstrong book I got, but I
think cranky buddy boy over in the next lounge is getting pissed off with
the lack of television on TV. Luckily he looks, really tired so I should be
able to catch Extreme Home Makeover after he goes to bed. Some part of me
hopes that he is doing well, but frankly, I'm too happy about my blood
numbers to worry too much about others tonight.
Night everyone
Friday, December 3, 2004
Day +23 Part Two
Oh yeah, I forgot to mention one more thing about today. I'm eating!!!!!! Good lord I love apples. I used to hate apples, but I can't get enough of apple related products. I'm starting to branch out into strawberry, peach, and melon, but good lord do I have craving after craving for fruit. Meat makes me gag, starches are unappetizing, and don't show me a vegetable, but I LOVE FRUIT!!!
On a sad note, we might have met the death of Adam's Chocolate cravings. The thought of chocolate is not appealing for me. I'm having a bit of difficulty looking at chocolate on TV, or smelling it in the hallway. I saw a commercial for a chocolate product this morning and all I could think about was how nice a fresh fruit flan would be instead.
That's right. the world's worst chocoholic on the entire planet just thought how nice a fresh fruit flan would be.
mmmmmmmmm FLAN
Goodnight
Day +23 Progress
HOLY CRAP! Did we have a breakthrough in the last 24 hours. Sorry about not writing yesterday, but I was in a bit of a world of hurt. besides, I've got so much to tell you about what has happened to me.
So let's start as we always do with the medical side of things. We did a second CT scan today to check the progress of the air bubbles in my liver. What the doctors failed to tell me two days ago is that air in the liver is much more serious than I was lead to believe. Anyway, I'm happy to report that the air bubbles are gone and I've been put on steroids to fight the fevers. I would have liked to have dealt with the fevers earlier, but I understand that the doctors needed to rule out all infections before it would have been prudent to change tactics.
When I woke up this morning, I could have told them that I was feeling better. I really wish I could explain how much better I feel than yesterday. I actually refused a wheelchair ride to the CT scan and chose to walk all the way from the Tom Baker to the Foothills Main building for the scan. I used the hospital porter as a guide and a backup in case I was not able to make it all the way. I then got up and walked back to the Tom Baker.........
OUTSIDE!!!!!!
I can't even tell you how strong I felt being outside for the first time in a month. I think an armed gang of thugs would have had a tough time bringing me down this morning. The CT appointment was actually quite fun since all the staff knew about my anal adventures to come. I had the doctors in a bit of a panic about my bowels so today I've also had my first ever enema, my first ever adult diaper, and my first ever anal probe. I know there's a more proper name for it, but come on, someone shoved a foot long tube up my butt and took samples by cutting small pieces out of my bowel wall. We also found a polyp, which the doctor was more than happy to deal with free of charge out of the goodness of his heart. Anyway, let's get back to the CT scan for the moment.
On the front of my patient file is my schedule for the day. That means that everyone in the CT department knew where I was going after the scan. I think they used every single butt joke in the English language. Thanks to everyone in the CT department, cause you made my day.
As far as the rest of it went, the enema was an enema. The best way I can describe it was like being a Tim Horton's cream filled donut at the cream filling stage. It wasn't bad, it just felt "original"
And you know, while I'm on the subject about fun appointments. The anal probe was really cool. I was awake and got to watch the entire thing on the camera. It's not every day that you get to see the inside of your own ass right, so I had to go for it. They had a nice little drug cocktail for pain and anxiety, that probably made the whole experience much cooler than it was. But come on, I got to see the inside of my own butt!!! The doctor who did it was also named Price, so we had a lot of fun on that point as well. Come to think of it, it was most likely the drugs that made it more cool, so scratch that whole last part about anal fascination .
Emotionally, I'm doing great as well. I had a real problem earlier on in the week, which I'm happy to say was cured by a lot of visiting by my mom. Mom, you will never know how you helped me get through the hard mornings. Don't forget Caity, she's up to doing her supermom/supersupporter/super person routine as usual. I figure that she's about ready to evolve into a being made up of pure energy anytime soon, since no human could do what she does day in and day out.
Now, how about something a bit more serious for a bit. I wasn't sure about this week when it first started. I tried not to let anyone know too much about how I was feeling, but I was about 50% ready to call it quits. It's amazing how much a two week old fever can effect a persons will to fight. I didn't want to tell Caity about that, but luckily, I got to wrestle through a lot of my problems with Mom. I'm happy to report that I am officially 100% back to fighting spirit.
Fuck you Leukemia, if that's the best you got, then your best isn't nearly good enough.
Wednesday, December 1, 2004
Day +21 Mystery Fever
Monday, November 29, 2004
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
Saturday, November 27, 2004
Day +17
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
Friday, November 26, 2004
Day +16 Engrafting
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
Thursday, November 25, 2004
Wednesday, November 24, 2004
Day +14 And off goes the Esophagus
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
Tuesday, November 23, 2004
Monday, November 22, 2004
Day +12
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
Saturday, November 20, 2004
Day +10
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 baldon 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.
Friday, November 19, 2004
Day +9 Mmmmm Chocolate
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.
Thursday, November 18, 2004
Day +8 Here come the Sores
> 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
Tuesday, November 16, 2004
Day +6 Eye of the Tiger
November 16th 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.
Monday, November 15, 2004
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
> 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.
Sunday, November 14, 2004
Day +4
> 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.
Friday, November 12, 2004
Day +2 Puking for Dummies
> 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.
Thursday, November 11, 2004
Wednesday, November 10, 2004
Chemo Day 8
> 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
Tuesday, November 9, 2004
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.
