In December of 1997 I found out that I had
chronic myelogenous
leukemia. The diagnosis was a result of a routine blood test that
was being done for my annual physical. I knew something was up
when my doctor called me at the office late one afternoon or early in
the evening late in the week. I had an abnormally high level of
white blood cells. We needed to talk on Monday, before his other
patients came in.. During the weekend I did some research on what
high white blood cell count might mean. It didn't look
good. I was desperately hoping for some alternative explanation,
but there was really only one possible diagnosis: leukemia, and that's
exactly what he told me. It's impossible to describe what goes
through your head when you're confronted with something like that.
The doctor did mention that there was reason for
hope. Bone marrow transplants were increasingly effective.
But they were very expensive, dangerous, and I would need to find a
good donor for the bone marrow. Roughly speaking, once cancer is
in your bone marrow, the only way to get rid of it is to apply
high doses of radiation and/or chemotherapy. Such high doses not
only destroy the cancer cells, but also your healthy marrow, which is
where blood cells are produced. These blood cells have many
functions, among the most important of which is that they form the
basis for your immune system. Without a properly functioning
immune system, a person doesn't last long. So, after all that
chemotherapy and radiation, doctors need to create a new immune
system. This is where the transplaned bone marrow (or stem cells)
come in.
I was very fortunate to have good insurance, so cost was not a big issue. What I needed now was a donor. Unless the transplanted stem cells or bone marrow are a very close match, your new immune system will attack your organs because the immune system will identify your body as "foreign." This is what your immune system does, in my very basic medical understanding: it attacks anything that enters your body that is genetically different. The ideal, therefore, is to find bone marrow that is extremely close to you genetically. If that bone marrow is transplanted into you, there is a good chance that it will not attack your body (which can easily kill you if severe enough). Or maybe it won't attack too hard. These attacks are called "graft versus host disease." Drugs are currently available to reduce the chance of such an attack, but they aren't foolproof, and they aren't much fun to take.
Fortunately, it turned out that my brother
was a
very close match. Siblings are usually your best bet. So we
made the preparations and I had a bone marrow transplant (BMT) in
September of 1998.
During the time I was at City of Hope in
Duarte,
California,
for the BMT, I had a laptop in my room and sent frequent updates to
friends,
colleagues, and family. One of these updates summarized what I
had
been through and is reproduced below.
It originally came with one jpeg, but I recently added a few more.
I also kept a type of diary recording my actions, feelings, and impressions during the first few weeks after finding out I had leukemia. In addition, I have put together all the updates that I sent, covering a period of around 2 years. For those who would like to know more about my experience or learn about going through a BMT (actually, I had a stem cell transplant), I can send you a complete copy of all the emails I sent during the experience. Email me at Peter.Tiersma@lls.edu.
TO: ENTIRE MAILING LIST
OCTOBER 12, 1998
Greetings from City of Hope. This message is going
to
everyone on my
original "updates" list (those who requested the more requent updates
already know much of the following).
Well, folks, the hospital phase of my treatment is (I
hope!)
over, and we
are now in one of the bungalows on the City of Hope campus. I
feel
like
the worst is behind me. At the same time, I still have to be
quite
cautious--only after 3 to 5 years after the BMT is it possible to say
that
all of the various risks are over and officially declare it a
success. But
so far I've been quite fortunate in how well things have gone.
Thanks to all of you for your cards, emails, support, and
prayers. Right
now, our main problem is boredom. I'm still too tired for serious
reading
or writing and can't leave the campus for outings yet. If you are
in
the
area, do drop by--visits are appreciated!
[address and contact information deleted]
For those of you who did not ask for or receive the
"frequent"
updates,
let me briefly go over the past month.
Thea and I arrived at City of Hope on Sept. 7. The
next
day,
the
radiation treatment started, three times a day, for four consecutive
days.
During this time we stayed in one of the bungalows.
The next Saturday I entered the BMT ward, and for the
next
couple of days
I was given chemotherapy. The net result of all of this fairly
intense
treatment is--we hope!--that the leukemia is essentially gone.
The
problem
is that it also killed my immune system. Enter my brother,
Benjamin.
Ben and his wife, Jeanine, had come to City of Hope for
several days
to
receive an injection that was meant to boost his stem cell production
(stem
cells are increasingly being used as a substitute for bone
marrow). On
Monday he came in and--despite some anxiety about needles--bravely let
himself be poked in each arm by a rather large needle--his blood was
then
circulated through a machine that "harvested" his stem cells.
Through
a
miscalculation, they had him give more stem cells the next day
(Tuesday).
Thea actually was the one to question the doctor about the
calculations,
and it turned out that Ben had in fact given almost twice the needed
amount
of cells.
Later on Tuesday, the actual transplant occurred. A nurse
came
over to
my room with a small ice chest--just like you would take to a
picnic--containing the stem cells. They very carefully checked
that
I was
indeed the intended recipient, checking my identification armband two
or
three times. Putting the wrong stem cells or bone marrow into
someone's
body would almost surely kill the person. They then hung the bag
with
stem
cells on my IV rack and let it slowly drip into my bloodstream via my
catheter. I felt nothing, and in a sense it all seemed very
anticlimactic.
This day is known as "Day Zero." In layman's terms, these stem
cells
"colonize" my bone marrow and begin to create a new immune system (or
to
recreate Ben's in my body, to be exact).
[This is the bad containing
stem
cells that are dripping into my body. The
stem cells look like ordinary blood]
My white blood cell count had been dropping for several
days,
and
by the
next day it was low enough to send me into an isolation room, with
special
precautions to avoid infections. Visitors (as few as possible)
were
allowed, but only if they were wrapped up like mummies in protective
clothing. For a while, I almost forgot what Thea looked like--all
I
saw of
her each day was her eyes.
[Thea and Rodrigo, one of the
nurses, all decked out in their protective
clothing, during a visit]
Thea, I might add, was with me throughout this ordeal,
and no
one
could
ask for a better companion under difficult circumstances. She
left
only
occasionally during the day, spending most of her time reading quietly
in
the room or playing videos for us at night. In the evening she
left
to
sleep in an RV on the hospital grounds.
Most of what I can remember about isolation is quite
hazy. The overriding
memory is mouth sores and inability to swallow (I had a suction device
next
to my bed--like the dentist--to remove saliva for around a week).
For
most
of the time that I was in the hospital, I was fed and hydrated
intravenously because of these sores.
Around Day Five (according to notes I made in my diary),
I
first noted
that my hair was beginning to fall out. My platelet count was
also
low
(platelets promote clotting and thus prevent bleeding). I got
several
transfusions of platelets and blood during this time, donated by Thea,
my
sister Jude, her husband John, Ben's wife Jeanine, and my cousin Susan.
[I always wanted to know what
I
looked like without hair!]
Around Day 11 my white blood cell count began to
rebound. Over
the next
few days it increased rapidly. One reason was no doubt that we
used
peripheral stem cells. The large number that I received from Ben
must
have
been a factor also.
On Day 13 (Sept 28) my white blood cell counts were high
enough to let me
out of isolation and into a regular hospital room. The next day I
was
allowed for the first time to go outside. I did have to wear a
heavy
duty
mask, which was not too comfortable. And for up to a year I have
to
avoid
direct sunlight (which seems to promote graft versus host
disease)--this
means wearing long pants, long-sleeved shirt, and broad-brimmed
hat. But
it was still wonderful to go outside.
Around October 1, I began to eat small amounts
again.
After not eating
for around 3 weeks, my stomach and digestive system were not sure quite
what to do with the food. But despite some minor setbacks, they
are
gradually returning to normal. My doctor measured the health of
my
digestive system by what it produces. So every morning he wanted
a
report.
Using his metaphors, we progressed through the water, apple sauce, and
mashed potato phases. When we reached the cigar stage, he was
satisfied
and authorized my release from the hospital. To be honest, I had
some
diarrhea later that day and so he kept me there another day for
observation.
On Day 25 (October 10) Thea and I moved into one of the
bungalows on the
COH grounds. They are pleasant places to stay and Thea has
already
made
it quite homey. It's also a very comforting feeling to know that
if
something happens, help is right around the corner.
Still, we'd love to go home as soon as we can. We
were
originally told
that we can expect to stay here until Day 100 (which according to my
calculations would be Christmas eve!). My doctor, however,
suggested at
one point that if things go well and he was assured that we would
come to
COH twice a week for testing, appointments, etc., he could be "lobbied"
to
let us go earlier. We'll just have to see.
Meanwhile, I manage to occupy myself with email, surfing
the
web now and
then, light reading, and watching all the comedy movies I recorded
during
the summer. At least once or twice a day we take walks around the
beautiful grounds. My stomach is still not completely normal, but
aside
from that, my main malady is that I have very little energy (which is
normal at this stage).
One other interesting tidbit is that I am supposed to be
on a
low
bacteria
diet, since I am still quite vulnerable to certain types of infections,
some of which could be quite serious. Several people in the BMT
ward
were
former BMT patients who had been released and then got pneumonia or
some
other infection. Anyway, this low bacteria diet seems to fly in
the
face
of everything you ever learned about health. Salads are
absolutely
verboten. Fresh vegetables have to be cooked to death.
Canned
vegetables,
on the other hand, are highly recommended. Bottled spring water
is a
no-no
(very
high bacteria counts!), but tap water is just fine. Fresh bakery
goods
are
out. Plastic-wrapped mass-produced bakery goods with lots of
preservatives
(i.e. twinkies) are just fine. Most fresh fruit is also out,
unless
in has
a thick peel.
Well, that's life here in Hope Village. Despite the
occasional trials and
tribulations, everyone here tells me that I am doing quite well,
relatively
speaking. At the same time, there's no denying that I'm a bald
guy in his 40s who doesn't heal as fast as he used to. It's
a long haul,
as one
doctor told me once. But I'm absolutely convinced that it's worth
it.
Best, Peter
Epilogue
