“On the merry-go-round I rode around, on the merry-go-round, around and around and around,” is what it’s like dealing with uterine carcinosarcoma and how it is treated when there is so little research.
Thoughts about most of the early treatments are easily found on this blog, as well as some of the current treatment that included Doxil chemo and surgery. Since then I’ve had successful IMRT radiation. Thus far, the carousel ride, me on a beautiful Palomino horse, keeps my ride on the upward rise.
Last week my cancer merry-go-round whirled and whirled. New chemo regime, another loss of hair, long infusion times, fatigue, nausea, and so on, pulled me further from reaching that brass ring. The calliope ceased its snappy, happy tunes and slipped into something from “Friday the 13th.”
Hair. My hair has always been my prideful mane. Thick. Glossy. Sometimes very long. Sometimes very short. In 2018, bald.
A week ago, the chemo curls were long enough to where I pulled out my hair product and accessories. I felt like a girl again. Less than a week ago, knowing the nightmare of watching my hair fall out and me too vain to have it shaved, I went in for the hip-grandma look of what is essential a female’s butch cut. This halted some of my joy. It halted some of my fantasy that I was a normal person again—like one who doesn’t live her life around cancer every day.
I know. Get over it. Listen to my own positive advice. Practice what I preach.
The thing is, I’m quite human with all the reality checks that I never thought would be in my later life.
The other thing is, I do work my way out of these funks. It’s like grieving for a lost loved on—let the grief do its job.
Today I was set for my first three-hour infusion. But first, a consult with my oncologist. He all but skipped into the room. His smile was so big that it almost slid past his mask.
In his French accent, he said something like this: I had a long conversation with an oncologist at Paris’s Gustave-Noussy Institute who specializes in endometrial cancers, including rare sarcomas. We discussed your case at length. I shared with her my thoughts about your chemo plan, along with the not-so-good return on your biopsy and the possibility of immunotherapy. She shared her experience that included combining Keytruda with Lenvatinis on patients like you with positive results. She also said there were two other treatments she has applied to carcinosarcoma patients with reasonable results.
He also has a consult call with the specialist at Mayo Clinic. The Mayo is currently reviewing my PET/CT scans and my most recent blood analysis. My physician’s plan is to compare their ideas and go forward with what he feels is the best for my condition. At this point the temporary brass ring, in his opinion, is Keytruda with Lenvatiinis.
The point of all this babble is that I feel so immensely cared for and blessed with our choice to leave California and return to Santa Fe where I landed a specialized oncologist determined to find the answer to keep me kicking the can down the road for many years. If I had stayed with the oncology unit in Central California and the medical oncologist who took my case, I can’t imagine what my condition would be now. He predicted my carousel ride would probably end in about two years. He wrote me off. He gave power to a “terminal cancer.” He took away any hope.
My PET/CT scans, echocardiograms, and regular blood draws, continue to show my internals (except for where the metastasized cancer has left its marks) remain those of a healthy woman. While the cancer remains progressive, it has slowed to millimeter growth. The two metastatic explosive events I’ve had before are past history. Why?
I asked the man whose life is treating cancer victims, and those with hardline cases, “why?”
“I don’t know. It could be the Doxil. It could be the way you live. It could be both. You are unlike my other patients, and just keep on doing what you are doing.”
What do I do? I am positive. When those funks with scary merry-go-round music strike like ear-worm music, I let them spin through me until my inner self takes hold. Then I resort to refilling all the good that surrounds me into my big gratitude basket.
Example: Today’s short walk let me see the unique line of fall asters (a fave wildflower) in full bloom, literally line the dirt road home; I could see the mountains to the east cast the golden yellow of aspen groves among the green pines; my favorite little bluebird, One-Leg, remains visible and active; and even if I did prematurely cut my hair, Spouse thinks it makes me look younger.
My gorgeous carousel Palomino horse rises back up the pole, and the calliope plays Mozart’s Sonata No. 17 in C as the cancer merry-go-round goes around and around.