Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death. This is a question I’ve asked and answered myself many times in my life.
If you’re not dying, why do you bring this up now?
I just received some unsettling blood tests, and I have some choices that I have to make. When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.
As many of you know, I was diagnosed with MS over 20 years ago. What you may or may not know is that I have had 3 family members die from complications of MS. This disease has been “in my face” for many years before it actually caught me. When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready. The answer was, “HELL NO!” For the first year though, I didn’t do much to FIGHT it. Instead, I began drinking ALOT. I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)
About a year after my “MSaversary”, I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron. For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not. I was constantly depressed. During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer. Around the 10 year mark, I think I WAS ready to die. Not prepared, but ready.
At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me. I decided that QUALITY of life meant so much more to me than QUANTITY! I have previously written about how the decision was made in a Five part series if you would like to read. The decision to start Tysabri Part 1, The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.
To date I have received 121 infusions of Tysabri. I credit this drug for giving me my quality of life back. I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.
At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri. My son in law was nice enough to drive me to Chicago for the visit. Because of my newest list of injuries, the doctor was unable to provide a complete exam. The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body. I have also been having some issues with my vision (though I have been attributing that to my age). He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it. (hopefully March)
NOW let’s talk about these unsettling blood tests….
My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV). Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!
hmmmm now what? I have a decision (well several to make)
Here are the drug facts
In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high. What the hell does that mean? A quick Dr. Google search said…
Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).
OF course the first thing I saw was CANCER……cmon!!!!!!! Seriously?!?!?
After speaking with my Neurologist, WE have decided first to have the bloodwork performed again. (there is always a chance for a false positive?) Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML. I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.
I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”