Today was the day. I counted to be sure. Five business days since the biopsy. I called for the results half thinking this will end up like all the other tests, half hopeful that an answer would be found this time around. I had a biopsy two years ago for the same dis-ease – it came back positive. It’s crazy to feel relief at being diagnosed with something incurable, and yet I was overjoyed and relieved to finally have a diagnosis after sixteen years of declining health. I was referred to an oncologist, a bone marrow biopsy was done, a second opinion sought, a finding that the original positive result was a false positive. Depression, hopelessness, everything negative you can think of followed. I was back to no diagnosis, the echoes of so many doctors’ findings “it’s all in your head” echoing off the walls. Fast forward two years. More unexplained symptoms. A decline, decline, decline. This diagnosis the only one that makes sense, even to a new set of doctors. A request for a second biopsy just to rule it out once and for all so we can move on.
Today was the day. The nurse says something about a protein build-up, I don’t really understand what she is talking about.
I say, “this was a test for amyloidosis.”
She says, “Yes.”
I say, “Is it positive?”
She says, “Yes.”
“I have amyloidosis?”
Two years later and another positive biopsy. I feel relief at first, then skepticism. Did I hear her right? Did she make a mistake reading the results? Are they going to take it away from me again? Are they going to say it was a mistake…again? Am I going to have to go through all this again only to be told there’s nothing they can do, it’s all in my head?
Then I realize, I have lost two years of treatment. How much damage has been done? My amazing primary physician says, “they can’t call you crazy anymore.” He’s already referred me to the oncologist, but they can’t get me in until August. A waiting game…
UPDATE: I decided to call back the doctor’s office and ask for a copy of the results to be sent to me and guess what??? The results say that the biopsy was NEGATIVE for amyloidosis, NOT positive. I am feeling quite angry right now, but I thought I would at least post an update here.
I didn’t want to sketch today, but I made a commitment to my daily creative practice…no matter what. So, I continued with Nina Rycroft’s Guide to Drawing Eyes class. Today is square-shaped eyes. I created three characters using the three square eye shapes from the video. I added color again, this time using Caran d’Ache Neocolor II Aquarelle for the skin and Derwent Inktense for the rest of the color. The sketch paper did not hold up well because it’s not made for watercolor, but there was an interesting bubble effect that showed up on the skin that I think is really cool. And, the baby looks a little sinister which I like 😉