Nineteen thousand, two hundred. Jesus Christ. Now what?
We recently
decided to reduce testing. We were to forgo scans and blood work unless
necessary. We felt liberated in our decision. We would stop sweating the small
stuff and just enjoy our limited days.
It’s not that
simple. We decided I would continue receiving IvIG, a $5,000-dollar, monthly infusion, that lessens
infection risk. Unfortunately, I need blood work before receiving IvIG. Rules are rules.
Of the 33 blood
tests the Farber ran, 32 were fine. The 33rd was my white count. It should
be around 5. Mine came back 19.2 yesterday.
Shit. We could ignore the result. Ted my oncologist suggested
as much, hold work- up and repeat the test in a week.
Now, 19.2 is
high. Life threatening infection high. But if so, where was the infection? I am taking high dose steroids, they raise
the white count. I was just hospitalized with pneumonia so, we decided a chest
X ray would be non-invasive and helpful. The X ray blandly reported “resolving pneumonia.”
As a hematologist,
I see 19.2 and think Leukemia. Specially, Chronic myelogenous leukemia. A pill now exists to treat CML. I don’t think I have CML. Any hematologist would tell you an increased neutrophil count without anemia, a left shift, early forms, or nucleated red cells
is probably a stress reaction, from infection ,most likely. Flow cytometry would make the diagnosis. Flow is another $5,000 test.
So, what to do? I am upset when Ted says he is, “open to
suggestions” about next step. He would not
be saying this if I weren’t a physician. Doctor, heal thyself. Cyn, who didn’t even
come to Boston, calls Sam, my pulmonologist. He recommended I start two new antibiotics.
And then I
realize I am not treating myself to get better, I’m treating myself for a more comfortable
death. My last near demise, from elevated carbon dioxide,
would have been a good passing. If I do
have a lung infection now, holding treatment may result in the same lovely
drifting away. On the other hand, holding treatment might not be the good death
but could sentence me to a dark, chronic care ward, where I would have to
beg a loved one to kill me.
What if this is
leukemia? If I don’t treat it, I will
develop an infection, or enter a “blast crisis” in which large sticky leukemia cells form multiple blood clots and stokes. That’s
no way to die, either. I bitterly
remember the med school joke/saying:
"Pneumonia is an
old man’s best friend”
I was a
hematologist, I have seen the results of “life prolonging therapy”
There is an old
Jewish saying “He was so sick he would have to rally to die”. This appears to
be my situation. I am an airplane pilot and
we are out of fuel. We will undoubtedly crash. I should attempt a smooth
landing (death by CO2 narcosis). Not treating my pneumonia may result
in a painful, lonely, angst ridden ride.
I try to discuss
all this with Cyn, but it is brain numbingly sad and complex. On some days, I feel better off dead. This
once healthy body now struggles to walk half a block. On the other hand, we had a lovely dinner
with Abby and Sam last night, that was worth hanging around for. And I can
picture Cyn telling me “Your weight is up! Your endurance is improving!” “Don’t
die,” she says, after telling me it would be OK to leave.
As cousin Larry
and therapist Mitch always say, “you never know what the future brings." In the
end, it will be decided for me. For now,
all I want is a life with minimal pain, occasional moments of joy, and to die with
peace.
Or so I
say. I decided to start multiple antibiotics
to treat what is most likely a recurrent pneumonia. I forced myself to attend
outpatient physical therapy today, using a cane to walk the 1,000 feet from car
to care. If my white blood count doesn’t drop, I may need to consider searching
for the cause, not necessarily to get better but to better aim the crashing plane for the runway
that suddenly appears below.