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One of the most frustrating aspects to dealing with a chronic illness is not having a very clear picture of what is going on with your body. Thoughts tend to filter through your head such as:
- What does this all even mean?
- What will the rest of my life look like?
- How long will I survive?
For me, personally, wondering how long I have until I start treatment, or will I have to start treatment?
With chronic illness you are sometimes lucky enough to have these pockets of time when you can worry a little less and enjoy your life a little more. I have been lucky to experience some of these pockets, where things seem relatively normal and I can tune out the invasive testing and the uncertainty of progression. So lucky. Next month marks two years since my Smoldering Myeloma diagnosis, quite hard to believe! But the most recent pocket I was enjoying slightly closed after my last trip to NYC.
You may recall one of my last posts where my specialists at Mt. Sinai were trying to determine if I have a Myelodysplastic syndrome. The good news is I do not! But in a twist of events, one of the two blood tests to check for T-cell populations came back positive, which could be what’s contributing to my low white blood cells. We won’t know what this means until my next bone marrow biopsy, though so far I do know that the presence T-cell populations can sometimes indicate signs of a T-cell lymphoma. Yikes!
Both specialists that I see in the city were okay with keeping my biopsy scheduled for mid-June due to the lack on infections that I’ve experienced. After thinking it over the past month, I called and had the procedure moved up to May 5th. Sure I cringe at the thought of feeling like a human wine bottle being uncorked when that giant needle extracts both marrow and bone from my back end. The fact of the matter is the desire to have a clearer picture was just stronger than shying away from a biopsy for as long as possible.
So here we are, another waiting game, which will extend about two weeks past the procedure. One of the specialists will be checking to see how much plasma is currently taking over my marrow, and the other will be digging deeper into this unwelcome colony of T-cells. Hopefully the latter is nothing, but I am doing everything I can to be happy, healthy and trying to keep open that pocket I had created and filling it with sunshine in the meantime.