7th. Group Email. Subject: I'm back blues
was awesome. I was skiing to my full potential. I ate and drank
like a normal person on a much needed vacation. My life was
back completely and fully, for the first time in almost 10 months.
finally reached acceptance, I came home rested and ready to
get on with my new daily regimen of radiation therapy. Then
Chris and I listened to the answering machine. Between friends
checking in and reminders of appointments that we had missed
was the voice of the radiation oncologist:
is some controversy over your situation. We should defer the
start of your radiation until you have had a chance to talk
further with Dr. Harker."
yet another test to keep me on my toes. The next day I basically
hovered by the telephone waiting for Dr. Harker to return my
call. The new news? It sounds like the tumor board and further
research is leaning towards a more aggressive approach to my
rare case: Stem cell transplant. Check out more about this procedure
at The American
Cancer Society's website on Lymphoma (if you want a good
been feeling so good lately it's hard to imagine going back
to chemoland. My eyebrows are growing back with a vengeance
and I'm quite attached to them; unready to part so soon after
they have finally reappeared. My face and head are growing beautifully
fuzzy with thin hairs, like wildflowers after a long winter.
And I'm feeling human again!
I talk to the transplant specialist on Monday. For now, I'm
in limbo. Taking vitamins. Relentlessly cramming calories. Surfing
the net for various topics as they cross my mind, like apheresis,
Quercetin, Autologous and digital cameras. Dreaming of ways
to spend my time before the next wave crashes.
worst news of all: Kuma has a cold! The house jester, prep rallyer,
prankster and spirit raiser is no where near her usual self.
Must have picked something up in the kennel while we were away.
Now she is the subject of attention and heaps of love.... Included
is a picture of her giving her unhappy look. Wish her luck!
Kuma gets sick once in a while too...
12th. Group Email. Subject: An Olde Fashioned Rhyme
the decision's been wrought,
the odds are 50/50,
with this new treatment lot.
a type of cancer,
that likes to come back,
So we must hit hard now,
with a high-dose chemo smack.
will land me,
confined to hospital wing,
for at least three weeks,
till my blood starts re-replicating.
for three months,
Intensive monitoring for two,
It's called autologous bone marrow transplant
after this, ski season's through.
they'll be tests.
And tests, tests, tests, tests!
So break out the needles,
and hope insurance pays for the rest.
odds are for doctors,
so they sound like smart dudes.
My odds are far greater,
cuz I got attitude!
you want to see the facts,
you can read up past 11,
deciphering the acronyms,
Kuma's all better,
She recovered real fast.
She's just like me,
tough to the last.
19th. Group Email. Subject: Return of the Plan.
a more detailed explanation of my next four months.
one: Chemo mobilization.
Provided that insurance approves the $50,000 procedure on time,
and I passed all the tests I did last Friday, this step should
start by the end of this week. I get admitted, they put a central
line in my chest in a vein to my heart(which I get to have for
the next 2 months). I get a chemo mix, stronger than before,
to help the collection of stem cells, and to retard tumor growth
while we're "harvesting" and waiting for the transplant phase.
Two days in the hospital and then I'm out. But I'll need close
monitoring as an infection could become deadly within hours.
A week after, I start high dose neupogen(daily shots)to stimulate
stem cell growth to the point that they are dumping out of my
marrow and into my blood. Collection starts when there is a
certain abundance in my bloodstream. Blood is drawn out and
filtered for the essential stem cells. The cells are frozen,
the rest of the blood is reinserted. This process can take anywhere
from 1 to 5 days, 4 hours a day. Once enough is harvested, I
two: High dose chemo and "transplant"
I am admitted to a special wing in LDS hospital that has spacious,
air filtered rooms, special nurses, dedicated pharmacy and all
the accoutrements essential for people without immune systems.
I start with a week of high dose chemo that is hopefully strong
enough to kill all the resistant lymphoma cells. The chemo also
kills off my ability to make new blood cells. Without a reinfusion
of stem cells, I wouldn't make it. Hence, after the chemo is
done, I'm reinfused. The stem cells eventually find their way
back to my bone marrow where they set up shop and start making
new blood cells. Once I'm stable (they're estimating a month)
I am released to home.
three: Home care and recovery.
For the first couple weeks at least, I will require 24-7 monitoring.
Again, an infection could become fatal within hours as I still
will have a weakened immune system. Then I imagine it's back
to the watching and waiting game as I slowly recover and get
healthy enough for the next phase.
four: Radiation therapy.
At first it seemed overcautious to me, but now that I've read
several journals about my condition, I completely agree I'll
need it. Since my chest tumor was so large when it was discovered,
a month of radiation is the best final touch on my insurance
against a recurrence.
all there is to it!
that my life in general is only days away from being put in
a blender on "whirl", I initially thought I should try to squeeze
in a bunch of skiing, recreating, and good olde responsibility
avoidance, while still able to do so. But it's just not me.
I feel better living life like today is just any other day.
After all, it is.
Pinki lining up for yet another gallium scan
22. Group Email. Subject: Plan C and D
funny feeling you get when you realize things aren't going exactly
out I have a couple issues that complicate the aforementioned
plan. And just when I was thinking that I was too young to have
1: My tumor is too large to start the stem cell rescue. The
stem cell part is a one shot thing, and the Docs want my tumor
to be as small as possible, so they've decided to do more chemos
aimed at reducing tumor size to increase my odds of success.
They will still collect stem cells next week before my bone
marrow suffers from more chemo.
VP-16 Chemotherapy used to mobilize my stem cells.
2: My heart is two weak for the standard mobilization chemo.
By ECCO they have found my heart's left ventricle to be operating
at 34% instead of the standard 50-70%. This could be from either
previous chemos or from current tumor pressure. Thus, they want
to use a chemo that requires less of my heart, and more time
in the hospital.
all my friends feel good about themselves for being able to
out-ski me lately!)
five days in the hospital starting tomorrow. The chemo Plan
is to use E-SHAP, a five day ordeal of five chemicals, then
collection, more E-SHAP chemo, restage, then to move on to the
transplant and eventually radiation. My list keeps getting longer
okay with campy violence, check out the movie "snatch". There's
a scene in there where two dogs are chasing a rabbit which I
find rather reminiscent of my life right now.....
try to keep emailing from the hospital, but it sounds like I'll
be a little busy. If you're in SLC, call me at LDS Hospital
to find out a good time to visit(I'm sure the snow won't be
Me and my brand new Triple Lumen Catheter.
25th. Group Email. Subject: There's been a mistake.
what the Doc's and nurses told me after they explained that
there was a mix up and that my heart was actually functioning
at 100%. It's nice to hear good news and all, but it sure would
be nice if it meant that I was getting better in reality and
not just in someone's botched paperwork. Anyway, This is no
straight road that I'm on, for now, I can handle the curves.
back in chemo land. My head is thick with chemicals. I'm back
to watching movies and huddling on the floor with the dog. I
have a triple lumen tunneled catheter hanging from my chest.
Sometimes when I move it dangles, clinks, and chatters and sounds
as if I was walking through a beaded doorway. The catheter requires
maintenance twice a day to keep it from clogging, but it should
make life a little more needle free for the next several months.
we went back to the hospital for a little lesson on how to keep
my catheter sterile. Here's a pict of Chris learning the ropes
on my backup, "Chester"...
Chris practicing on "Chester" before she gets to
move on to me!
27th. Group Email. Subject: Lymphoma Journal
Well, I've been waiting for perfection, but since that's so
far away, I thought I'd tell you all to check out my website
anyway. Tell friends about it, especially tell cancer folks
about it, and keep in mind that it's underconstruction and half
of it was written and designed by me while I was blasted with
chemo and other (prescription) mind altering drugs. Well it
was a lot safer than using heavy equipment!
no further ado, grab a coffee and link to www.lymnphomajournal.com
and let me know if there are any problems, thanks!
The secret interior of the "collection" room at
the sperm bank