March 4th, Group Email
Message. Subject: New Routine
Well, My life has taken on
a new routine. One of the biggest changes is the fact that I
require 24-7 companionship in case I suddenly get sick and cannot
make it to the hospital on my own. This may not sound like much,
but it's really a huge deal to me. I'm one who savors independence
and time spent alone for drawing or writing or bouncing off
walls. It also seems like a lot for me to expect someone to
be around me all the time. I'm just not that entertaining. This
week my mom is out here keeping me company.
My protective white blood
cells are gone right now so I have to avoid public places and
most importantly, wash my hands all the time. My mom has been
acting as the boundary police catching visiting friends at the
door and preventing anyone with a cough or sniffle from entering.
"Hi, you're not sick, are you?" Rolf, of course, says "no, I'm
fine", rushes in and breaks out into a loud, prolonged coughing
fit that leaves him doubled over and gasping for breath. It
was classic performance on Rolf's part, Mom wasn't amused.
The other big change is the
horrifying daily routine of cleaning the catheter: Well, I haven't
had good luck with "body tubing", and the new catheter is no
exception. This sprawling contraption burrows under my skin
by my nipple, tunnels up to my neck where it does a 180 and
dives into a vein headed straight to my heart. It's purpose
is to allow for easy access to my blood stream. That way blood
can be taken, filtered for stem cells and returned, chemo can
go straight to the big veins, and I can do blood drawing at
home for the daily samples. Beautiful in theory, pain in the
neck in reality.
A couple days ago the thing
got clogged and wouldn't draw blood. I went in and had the nurses
try it. After having me contort into strange positions they
decided they couldn't either. Then they sent me down for a roto
rooter in angiogram where they prepared to send a line up from
my groin to scrape a clot off the inside end of the catheter.
"We do it all the time!" However, the Xray showed that the problem
was a kink, not a clot. Now they started saying "this is very
unusual". I was give a skimpy conscious sedation and they proceded
to jam the catheter back and forth through it's tunnel until
the kink wore out (about an hour). Judging by how my chest has
felt since, there must have been a time when both techs took
on the doctor in a game of "tug of war" with my catheter. Now
cleaning the catheter is horrifying because if it turns out
clogged again, I know exactly what I'm in for. It's been finicky
lately, but I'm giving it my all to keep it going. It has to
last at least two more months, and I've only had it for a week!
The other thing I have to
NOT look forward to every day is the neupogen shot. As far as
shots are concerned, it's about as painless as it could be,
and Chris is about as nice as nurse could be (she gives good
after shot hugs) I just happen to get all worked up whenever
I see a syringe coming my way. Along with the neupogen I take
other daily medications, a antibiotic and a blood thinner, which
I feel crimp my style....
Mom's pastel from her visit
I've got some good stuff
in my new routine, too! Although I had to quit going to my drawing
class, I'm drawing at home almost every morning, painting in
the afternoon if I still feel up to it and I'm not stuck in
a waiting room somewhere. Mom has been working on a pastel drawing
too. It's nice to see her at work.
I haven't been sick enough
to watch movies all day, but Christine and I have been slowly
becoming addicted to "Tomb Raider" on our new playstation (thanks
Steph!). If I ever stop sending out these emails, it's probably
because I'm exploring some new dungeon in the living room.
Stay tuned! ~J
My blood spins right round baby right round on the aphersis
March 7th, Group Email
Message. Subject: Stem cells away!
It all started five days ago
with the neupogen shots. These shots stimulate your bones to
make blood. Most of the real action happens in the marrow of
your pelvis, spine, and skull. The docs wanted to stimulate
these "bone factories" so they could collect the key ingredient,
the stem cells, which later will act as an antidote to the high
The neupogen shots have an
exponential effect, telling the blood factories to produce double
time, quadruple time, etc, each additional shot. Unfortunately,
these factories are better at producing than getting the product
out the door, and you can feel the blood piling up in your bones
(some patients get by without ever feeling it but I sure did).
I had some hints of "bone pain" on Saturday and Sunday, but
by Monday afternoon my pelvis started to surge like it was having
a party of it's own, and I wasn't invited.
It pulsed an irregular beat,
giving me the shivers, or sending my pelvis on involuntary gyrations,
as if I was suddenly playing hula hoop. I could hardly sit still
for Chris to give me another shot of neupogen. I couldn't conceive
of my pain getting any worse. I was doing the maximum doses
of pain relief without restraint. I did anything that could
distract me. I watched a (luckily) incredibly suspenseful movie
(The Professional). I struggled with a new server for my website.
I wandered the house.
39 million stem cells, ready to be frozen, the goods.
I looked at my bed and laughed
because I figured I wouldn't be getting any sleep. I wandered
up and down the hallway making exclamations like "AOUHWEE" and
"YHOO". Then I would decide that I was too sore to walk. I'd
then sit down for the little time it took to realize that I
was too sore to sit. I called a nurse and asked about taking
more drugs. She suggested I try a hot or a cold pack. I was
in too much pain sit down with a pack so I wandered the halls
until I got on Chris' nerves. She made me take a hot bath.
It was incredible. No pain!
Just soothing heat! Complete relief. I figured that I had about
10 minutes to get out of the tub, take a load of pills, and
try to fall asleep before the pain came back. I got out of the
tub and was proved wrong instantly. I had an Elvis pelvis shudder
reaching for the towel UNH HUH! I was amazed. The pain is hard
to describe, like hitting the funny bone on your elbow; you
don't know whether to laugh or cry. I went to bed anyway. We
fired up the heating pad, and after I could feel it's penetrating
heat, I fell into delicious sleep.
In the morning, I felt fine
(fine is relative). It was almost a disappointment. Guess I
figured that I was getting the hang of it, or looking forward
to another day of not helping with the dishes... Anyway, here's
where the good news comes in. In the afternoon I got a call
saying that the blood I dropped off that morning had an incredible
level of stem cells, and that It was time for me to come in
to have them removed. The news was not only good, it was at
least a couple days ahead of schedule.
How cancer invades your life and your refridgerator
The apheresis procedure was
rather uneventful. I had a tense moment wondering if my finicky
catheter would hold up to the machine's high speed blood sucking
action, but all went fine. The blood gets sucked out, gets spun
around, the stem cells squirt into a bag for freezing, and then
the blood returns. It takes about 3 hours. I watched half a
James bond movie, wrote a bit, slept a bit.
The good news came that night
at 8:30 when the tech called me. "We've collected a record number
of stem cells!" She exclaimed. The goal was 5,000,000. From
me we collected 39,000,000. "Some people can't give that many
stem cells in 10-20 sessions, and you did it in one!" She explained.
So, no more neupogen shots. Another step in my recovery is done.
And enough stem cells have been collected and frozen that I
have good insurance for future treatments.
It's been an incredible couple
of days. I have just completed a major step of my treatment.
The news is good, but now I'm faced with the next steps. Not
Tomorrow a CT scan. Friday
a new chemo starts. Monday, more chemo, and Tuesday I'm admitted
to the University Hospital for a short inpatient chemo. Busy
schedule, then the really scary wait starts.
One final piece of business:
There are now two ways to get my updates: by periodically checking
my web site (now www.lymphomajournal.com) or by staying on my
mailing list and getting emails. If you would prefer to stay
updated by website, let me know and I'll take you off the mailing
list. By checking via web site there should be fewer graphics
problems and you can read em when you're good and ready....
Otherwise, I'll just keep you on my list, where you'll be forced
to read my HORRORFYING stories to come. ~J
Space age infusion room with a view of the Wasatch.
March 16th, Group Email
Message. Subject: RICE Chemotherapy
RICE may rhyme with nice,
but it's really an acronym for my new chemo slushies. I just
finished my first round. One down, 2-3 to go. Hopefully just
2 more. One round consists of two days getting infusions as
an out patient and two days getting infused in the hospital.
None of these days are particularly bad on their own, but all
stacked up together makes for quite a challenge. Even more challenging
now is just the thought of spending a whole month in the hospital
after the RICE chemo is over. I'm already sick of movies, video
games, TV, being lethargic.... Sick of being sick.
I'm loosing all my hair again.
Again. It's dropping like mad. luckily my eyebrows are stillhanging
around, though I won't pull on them to test wether their rooted
or not. My legs are silky smooth again. I feel like I'm 11!
All the good places to stick a needle
March 22, Group Emailing.
Subject: And time continued
Well, christine kicked me
off the playstation so I guess I'll do a little emailing.
All's well in chemo land.
I've returned to a more bearable level of functioning from the
depths of the last chemo. I skied today, hiked yesterday and
have been enjoying the spring weather throughout. I even did
a little work in the yard with my nifty bacterial mask on. I
had the energy to rake leaves for about 3 reps of 2 minute intervals.
Then the mask really came in handy for when I worked on the
compost a bit. Yuck!
Spring weather has also given
me the itch to travel. This evening I was watching planes traverse
the blue, water filled air above the valley and wished I was
on one. Until, of course, the familiar cancer babble filled
my head saying, "you couldn't do that, your counts are low,
you'd catch a cold and besides, you have Drs. appointments every
day for the next three months!" It's hard to make fun, adventerous
plans these days without them coming under the scruitney of
cancer babble. I won't miss cancer babble. Or saying "gee, my
counts are low".
So, I'm feeling good. Know
what that means? That's right, I'm about to start another chemo.
I get rituximab tomorrow, a good weekend off, chemo monday at
the Huntsman, and chemo Tuesday and Wednesday in the University
Hospital. If all goes according to plan (insert laughter regarding
the reliability of hospital plans here). I have about a month
of these short, two week cycles before I'm admitted to LDS Hospital
for a month, what I'm affectionately calling the big bang.
Did I mention that my Lymphoma
Journal website now officially has it's own home at www.lymphomajournal.com
It's a heck of a lot easier to explain than my previous address,
A secret spring I visit in times of need. The snow finally
melted enough for me to visit.