1/5/2012
Today brought full realization that this is a deadly
deal. I felt like I was
dying. The walk from the parking
lot to the office just about did me in on the streets of Lörrach. Turns out my
red cells ad dropped from 9.3 (already badly low) to 7.2. Today we got the authentic name of the
disease T-cell/histiocyte-rich large B-cell lymphoma (THRLBCL) stage IV intermediate (of four stages). Today we saw the pictures from the PET
CT scan illuminating all the areas of involvement in the spleen, liver, spine,
muscles and various regions of bone mass.
This would explain the excruciating hip pain I’ve been wrestling with
for a few weeks time. (Good call on not following up on physical therapy
appointments – it just didn’t feel like that kind of pain).
Today I asked the time frame question, “How long have I had
it and how long would I last without treatment?” From a few years to a couple of months I’ve had it for the
first question – One month for the second – but the way I felt that seemed a
tad optimistic.
Today, meteorologically we experienced rain, wind, sunshine,
a rainbow, lightning, thunder and hail – in January – felt almost Shakespearian
or maybe just another funky day in Germany.
Today we picked up our prescriptions for a course of therapy
(these are the ones I take at home) – just shy of 1000 euro.
Today we started therapy – exactly 3 weeks from my first
visit to the oncologist for blood testing. In between I’ve had the PET CT scan, bone marrow testing, a
surgical snip of lymph node for analysis, and echocardiogram, lung function
testing (fairly comical experience asking me to run up and down stairs in my
condition while a big blue plastic clamp was hanging from my right earlobe and
also for my almost complete inability to follow direction about inhaling and
exhaling at various speeds or giving the technician the English name for a
“booth”, “Oh a boose” and later, “You must return to the broose”), numerous other blood draws – and all
through the holiday season. I must
say I’m impressed. The first drugs
of the R CHOP therapy: prednisone and Vincristine by IV. In addition and later in the day I
received two units of blood.
The impact of these two things has been fairly dramatic so
far – I feel much stronger than this morning – nothing like a few more red
blood cells and a bit of prednisone.
Today I experienced the camaraderie of the chemo infusion
room. It’s a quiet, busy and
lethargic place. Eight lounge
chairs, usually full with all ages of patients, each with their hanging cords for
the IVs. It is customary for a Germany exiting a dining room of a restaurant or
a waiting room in a doc’s office to say “Auf Wiedersehn” but when you’ve sat
with these folks for a couple of hours sharing a very elemental experience that
goodbye takes on a whole new feeling.
Today Diane has been my precious wife – this is both above
and beyond and as usual. Thank you
my love.
Today we continued to experience the power of encouragement
and prayer by the community of God.
The response to our monthly prayer letter revealing this has been
phenomenal! Keep sending these
prayers aloft!
The next big event is the installation of a “port” (Frankenport I think I’ll call it) on
Monday morning and then the big guns start to fire Wednesday with 6 hours of IV
chemo.
12/6/2012
The improvements experienced by the close of business
yesterday are hanging on. The hip
pain is almost non-existent (that really means the odd ibuprofen now and then
keep it at bay). I was able to do
things today that I would have just sat back and put off a few days ago. Laundry loads, the tedium of running
back and forth to the printer to photocopy bills for faxing to the insurance
company, vacuuming, tossing the Christmas tree off the balcony to the street
edge and attaching the euro coin to it for the fire department’s pickup
tomorrow – all the typical things one might do on Three Kings Day, celebrated
here in our corner of Europe.
Screwed up my courage to read up more on the disease. It is mistaken 85% of the time for
Hodgkin’s – something we experienced for the space of only half a day. That period, however, led us to share
the hopeful 90+% cure rate for Hodgkin’s before we had to retreat to the 60-70%
rate for THRLBCL – that way many email and other contacts got to experience a
bit of our roller coaster ride.
The disease is not usually picked up on until stage 3 or 4 – that makes
pretty good sense based on my experience with it.
The whole family got haircuts today – just regular haircuts
– it’ll be a few weeks before I might have to go for the more radical look.
Diane’s been cutting my hair since I was 18 – I should have invested all I
saved. She also made some
traditional Swedish rice pudding in an effort to employ comfort food in the
quest for health and harmony.
These are only two tiny reasons among so many huge ones that I realize that
I well and truly married the right woman!
Our dinner-time devotional tonight (from Jesus Calling) challenged us that the
more extreme the circumstance the more opportunity to see His power and
glory. Writing about this stuff
can sound awfully me-me centered and I don’t want to come across that way. I want it to be about His glory and the
cool thing is – that’s what everything is ultimately about anyway.
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