So for my initial consultation I chose Moffitt Cancer Center. By coincidence I am only 35 minutes away from one of the best places in the country to get treatment. From my prior experience (successfully) treating my daughter’s cancer when she was a toddler, in America your cancer outcome is very much influenced by where you go for care.
Don’t get me started on health insurance! Its something I have become very well acquainted with since my daughter, a cancer survivor, became permanently uninsurable in 1987 – until Obama changed all that in 2014.
While “Obamacare” is a big improvement, it still needs a lot of work. Most affordable policies are narrow network and would exclude Moffitt (which defeats the whole purpose of insurance in my opinion).
But luckily, right now I have my corporate insurance, which is (mostly) accepted everywhere here in Florida. So on to Moffitt. No referral needed!
So after just a week or two, I was off to Moffitt for yet more tests and a meeting with Dr. Javier Pinilla-Ibarz.
First off, the lab work. They have a lab onsite, so some preliminary numbers were available right away. WBC 20.11 and Lymphocytes of 15.08. WTF! In just a couple weeks my numbers seem headed for the moon.
I’m starting to feel like good cancer or not, I’m possibly fucked.
Next, I had to learn about the CLL Flow Cytometry and the CLL Fish Panel.
The “Flow” will take a couple weeks and confirm the diagnosis of CLL or some closely related disease. It can also determine if I have some sort of sub-disease such as Hairy Cell Leukemia.
At first, I really hoped I didn’t have Hairy Cell Leukemia. Who the fuck wants to tell their friends they have that shit?
But then, a little google revealed that Hairy Cell Leukemia is even more survivable than plain jane CLL so now I am rooting for that bad boy.
The Fish Panel unfortunately will take 6 weeks. This will identify the chromosome abnormalities that predict the rapidity of progression of this disease.
I learned the dreaded “17p Chromosome deletion” was sort of the worse diagnosis you can get, although possibly newer drugs are promising.
So I wait in the Twilight Zone. I go about my workday and normal life, while these lab tests grind on, waiting to see what my future holds, pretending that anything else really matters.