I awoke one morning in 2016 to find that my voice had risen at least half
an octave. I disliked this whiney six-year-old
voice. I had been there and done that as
a whiney six-year-old in a stoic family.
My dislike of the voice did nothing to change it.
About this same time food was becoming difficult to
swallow. I had a barium swallow test. Barium is opaque to x-rays. The victim is given barium-laced drink and
foods of graduated difficulty to swallow, while the x-rays take pictures. I had a narrowed esophagus. A gastroenterologist stretched my esophagus
and invited me to an explanation of his findings.
At the same time, my wonderful PCP, worried about my weight loss, arranged a PET scan; the PET scan showed that the 14 ½ year old breast cancer was now metastatic to some vertebrae and to a mediastinal (between the lungs) mass. Of course, I went to the explanation of the PET scan and returned to my favorite poisoner for chemotherapy. I forgot about making the esophagus appointment
At the same time, my wonderful PCP, worried about my weight loss, arranged a PET scan; the PET scan showed that the 14 ½ year old breast cancer was now metastatic to some vertebrae and to a mediastinal (between the lungs) mass. Of course, I went to the explanation of the PET scan and returned to my favorite poisoner for chemotherapy. I forgot about making the esophagus appointment
The chemotherapy made me bald again - no big deal – been
there, done that. The Oncologist’s
organization gave me some colorful hats and I was happy to read or doze in a
reclining chair for a few hours each week.
The only troublesome side effect of Taxotere was that it damaged the peripheral
nerves in my hands and feet; stroking silk feels like stroking sandpaper. I have become even more clumsy and my hands
and feet tingle, not unpleasantly, most of the time. I use pliers to open twist off caps. I continued with my Oncologist until the
organization that had head-hunted him from Martha Jefferson fired him, a nasty
ploy, I thought.
I returned to Martha Jefferson and found a knowledgeable and sensitive new oncologist. My hair grew back, on a gentler, but effective regimen. After happy months at Martha Jefferson, I signed up for a clinical trial at UVA. I read in C’ville about a new bi-specific, hybrid, antibody, one part of it attached to killer T cells, and the other to cancer cells, creating a bridge. Intrigued with the ingenuity of the idea, I looked up the researcher in the UVA phone book and called; I expected that an efficient secretary would answer and tell me to go fly a kite. I was nonplussed when Dr. Lum’s answering machine answered. I hesitantly offered my services as a guinea pig.
The next week a doctor who ran some medical clinical trials at UVA called me. He said that Dr. Lum’s idea was not yet ready for trial, but he had a monoclonal antibody that was. I interviewed him later and agreed to join the clinical trial of Margetuximab. The end point of the study was progression of the subject's cancer or the subject’s death.
I returned to Martha Jefferson and found a knowledgeable and sensitive new oncologist. My hair grew back, on a gentler, but effective regimen. After happy months at Martha Jefferson, I signed up for a clinical trial at UVA. I read in C’ville about a new bi-specific, hybrid, antibody, one part of it attached to killer T cells, and the other to cancer cells, creating a bridge. Intrigued with the ingenuity of the idea, I looked up the researcher in the UVA phone book and called; I expected that an efficient secretary would answer and tell me to go fly a kite. I was nonplussed when Dr. Lum’s answering machine answered. I hesitantly offered my services as a guinea pig.
The next week a doctor who ran some medical clinical trials at UVA called me. He said that Dr. Lum’s idea was not yet ready for trial, but he had a monoclonal antibody that was. I interviewed him later and agreed to join the clinical trial of Margetuximab. The end point of the study was progression of the subject's cancer or the subject’s death.
For me the trial involved going to UVA’s Emily Couric
Cancer Center for infusion weekly and undergoing various scans every so
often. I went faithfully to my
appointments, despite the dreaded UVA hospital parking garage. I continued to lose weight. My blood pressure had been high a year ago
and I took Lisinopril for it. As I lost weight my blood pressure
plummeted. I remarked to the doctor
running the study that I must consult with my PCP about stopping the blood
pressure medication. The doctor running
the study made clear to me that he was now my doctor and that I should stop taking Lisinopril.
.
.
On December 31, I woke up with a voice that was practically
only breath. Ox said he wanted to go to
Lowe’s and Kroger. I asked if I could
come along; I wanted to buy food like
eggs, jello and ice cream that I could swallow easily. I’d
read while he was in Lowe’s and go with him to Kroger. As we walked into Kroger I started gasping for air and emitting
a choking cough. Ox got me sitting down
at Kroger’s little coffee shop where I half lay across the table gasping. A kind, concerned worker came over to us and
asked if she could help. She stood by as
I continued to gasp. After about 15 minutes
the fit subsided. The kind worker came
with us to help me into the car. Ox
thanked her and offered her a twenty dollar bill. She demurred, saying she was “paying it
forward.” Ox asked me if I’d like to go
to the emergency room. New Year’s eve in
the emergency room sounded ghastly. I
said I just wanted to go home.
The very best thing that I have learned from this return of
cancer is how truly kind. People can be.
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