A year in the dance with cancer
Wow, has it been that long since I have posted!? Yes, it has been over a year in the dance with cancer since I posted. This has been a long and difficult year, but I survived and I am doing well…
My last post on this was April 17, 2016 an eternity in some respects and a moment ago in others. Since my last posting, I had a stem cell harvest, had to delay a stem cell transplant, I came out of remission twice, required two addition rounds of radiation therapy and was told I had 3-6 months to live. Holy crap on a cracker!
The first time I came out of remission was shortly after my stem cell harvest. Cancer had become resistant to the drugs I was on, and my chemo was changed to Kryprolis, Revlimed and Dexamethazone. This dropped my markers down to a normal range but only lasted several months until my dance started to mutate. I was no longer leading the dance.
Things went down hill
In August of 2016 things went down hill. I developed a pain in my neck [other than my husband] and lost the use of my left arm. I was sent for scans and it was determined that I had a “thickening” along my c spin that was pinching off the nerves to my arm. So it was off to radiation therapy for 10 sessions. This was a difficult treatment as the area involved my throat, which became painful and I had trouble trying to eat. My battle with weight loss began here.
Shortly after I finished radiation, several small lumps developed on my torso. When I brought it to the attention of my radiologist, at my 6 week follow up, he said they were just subcutaneous fat deposits and nothing to worry about, and my local oncologist agreed with him. In November, when I went to see my specialist at Moffit, I had developed several more lumps and the original ones were growing larger, so he decided to do a biopsy just in case. Turns out it was Myeloma… go figure. My specialist did the typical battery of myeloma tests, including blood work, 24 hr urine and bone marrow biopsy. There was nothing way out of wack… so why the lumps?
And the rabbit hole gets deeper
Back at my local oncologist I was to receive a new treatment called daratumumab along with pomalidomide and Dexamethazone. Before I started on the new treatment, I developed issues with my pancreas that was determined by my blood work and I was sent to the hospital.
I spent 4 days in the hospital, when I was released the diagnosis was sever pancreatitis. Soon after, I received my first Dara [short name] chemo infusion on December 14 (I was still waiting for my insurance to approve the Pomalidomide), and when my standard blood work came back the next day it was not good… I was sent back to the hospital with a bilirubin count of 8 which went up to 11 in less than 24 hrs.
After several procedures, I ended up spending Christmas in the hospital. I was released on December 27 with a new drain tube to a bag that was strapped to my leg. Lovely. Diagnosis, tumor on the head of pancreas blocking the main bile duct. After being released from the hospital we continued the weekly treatments for two more weeks. By the time the forth treatment was due, it was determined that this combo of chemo was not working. Bah Humbug. But… I still had a designer bag that was more expensive than any of the Coach bags my daughter or step daughter have!
The best part…or not
It was determined that the current chemo cocktail was not helping, and perhaps making things worse, my local oncologist made a call to my specialist at Moffit. The consensuses between them was that there were no know treatments that were effective in treating extramedullary plasmacytomas of this type. Their recommendation, no more treatment… and I went ape shit on them…
ME: What! your sending me home to die! DR: Oh no that’s not what we mean… ME: wait you just said no more treatment… DR: Yes, but we”ll keep you comfortable… ME: NOT ACCEPTABLE!
And this was just what happen between November and January. There is more to come.
Life is simple… Listen to your instincts!