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.