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2/26/2017 Latest post:
When a right handed quilter loses the use of her right arm, we all mourn—especially me. I am that quilter! Last July, I sought medical help for the numbness and tingling I was experiencing in my right thumb and forefinger and up along my right arm.
My primary care physician, who I trust, sent me to a neurologist, Dr. Morse who misdiagnosed my situation for months even as I pointed out that the 18 sessions of physical therapy were not helping and the pain and my limitations increased weekly.
It was not until the MRI ordered by my primary physician in January that I learned that I have a “mass” which is impinging on the nerves and muscles of my right arm. I have lost 80% use of that arm. I now eat left handed and live in constant pain. I cannot use either scissors or the rotary cutter. I miss creating with cloth….
The good news is that there is no sign that the cancer has spread anywhere else. The tumor is encasing the subclavian artery and vein and a cord of nerves, so this is the cause of my nerve problems in my right arm.
My partner of 32 years, Jeanne Neath, has been with me throughout these challenges. Her support is invaluable. For example, last weekend we drove up to Eureka Springs to eat at our favorite Ark-Mex restaurant, the Oasis. In solidarity with my having to eat with my left hand, she decided to enjoyed her delicious cheese enchiladas using her left hand! What a woman! Typing is hard on the nerve pain in my arm and hand, so Jeanne is doing most of the updates.
I've uploaded a photo of my new vintage Mouton coat we found in Eureka Springs that weekend--it looks good with my hair, yes? May not have that hair soon. It was good to play that day......
Much love, Paula
from Jeanne: Just wanted to update you women on Paula's health. We did get the biopsy results - finally- on Wednesday. The mass is definitely cancer and is believed to be a metastasis from her 1988 breast cancer. It is the same type of cancer. There was a little breast tissue left after the mastectomy and presumably the new cancer started there. They are calling this advanced breast cancer, though there is no evidence of the cancer having spread elsewhere, except for the nearby lymph node or nodes.
The oncologist wants Paula to join a clinical trial. For her type of cancer the standard of care is a hormone blocker (as the cancer is estrogen dependent), but this trial is testing out an experimental companion drug, ribociclib, that increases the effectiveness of the hormonal treatment. The drug company has already done quite a bit of research on this drug and it does seem to work, though it also has some not so great side effects. If Paula does the trial, and we are leaning toward it and will likely start it this week, then both drugs come in pill form, so no hospital chemotherapy, just a bunch of ongoing testing by the people running the clinical trial.
Note: We are going today, Monday, February 27 to join the clinical trial.
Of course, we are continuing to look for alternative treatments (and Paula is already doing several of those). We very much appreciate everyone's positive energy, visualizations, prayers. We need for the tumor to shrink away and especially to shrink away very, very soon from the nerve, artery, and vein it is encasing. Paula's right arm continues to grow more painful and less usable due to the tumor's pressure on the nerve near her armpit.