Being a deep thinker has its advantages and disadvantages.
I’m always thinking. Thinking Thinking Thinking. Analyzing Analyzing Analyzing.
When I woke up the other morning, I was struck by how “relatively ok” I felt,
albeit exhausted, always fatigued, achy, with some neuropathy, but ok. I was truly
surprised I felt so ok, as feeling Not ok is my regular, “new normal”, and feeling well
or ok, is “abnormal” and surprising. Then it hit me… I really am doing ok on this current triplet
cocktail treatment. It’s still working it’s magic and dominating the myeloma cells. I
smiled and thought, “I’m alive! Seven and a half years after diagnosis, I’m
still alive, and my current treatment is still working! Still working, still surprised… is my new normal.
Julie”… but seriously… it is a miracle, considering the aggressiveness of my 7, (almost 8)
year myeloma battle and my history of burning through treatments after about a
year (or less). My current triplet treatment of Darzalex, Pomalyst, and Dex
steroids have been suppressing the power of the myeloma cells for about 5
months now. I marvel at my (still) low IgA numbers and almost non-existent M Protein.
I marvel at the power and chemistry of the myeloma meds keeping me alive. I constantly
think about the “intelligence” of these medications, altering the chemical
properties of me cellularly, fighting this ferocious battle within me. Cells killing
cells. Powerful medications giving power to my internal self, in a
bio-chemical-physiological way I still cannot comprehend.
monthly status labs will be later this week), I never let my guard down. I live
month to month, blood test to blood test, always prepared for the roller
coaster shifting in the “wrong” direction. Another “new normal”, rather an “altered
normal” way of thinking. Taking nothing for granted, always wondering what’s
around the corner. The When, not If, will my status change? It’s kind of like
living, while always holding your breath. Living on a precipice, wondering when you’ll almost fall of the edge… again.
oncologist a “be honest with me” timeline question? This was at an appointment
where my labs told the tale of me not responding well to my previous treatment,
and we were discussing my next treatment options. Without sugar-coating my
question, I bluntly asked: “So Dr S, what if I decided to take a medication
break, or I just decided I couldn’t take all the side effects any more, and stopped treatment… How
many “Years” would I have?”, I directly asked. With a pause, and thoughtful caring
voice, he looked directly at me and said: “it would be months, not years. Many
months, but not many years”….
So I restated the question, emphasizing the word “Years”. “How many Years would
I have left, without any chemo treatments?” He leaned over very intently, and
replied, “Julie, I’m not “God”, and I don’t have a crystal ball, but if you
chose to stop all treatments, it wouldn’t be “years”, it would be “months”… “it’s the medications keeping you alive”… My
myeloma numbers were pretty high at that time, so I understood and absorbed the
gravity of what he was saying…
the truth, the whole truth, and in my face. I want to assess my options,
knowing if I even have options. I’m constantly trying to wrap my head around
this situation I’m in, that still feels surreal, and still seems like it can’t
be. That I’m really talking about someone else and telling someone else’s
time, one month at a time, one blood test at a time, one infusion at a time,
one pill at a time. This is my life. For however long my life is, according to myeloma.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can