Tests & Trials

Prompt from Soul-Writing Class: The Way Things Were Must Change…

I sat on the gurney yesterday at MGH with the Johnny opened in the back. “You can keep your tights on,” the nice nurse said, “but everything up top must come off.” I’d thought of her in the morning and hoped she be working. She is always warm, friendly, and kind. She holds my hand hard and chats when needles go in, when the pain medicine is injected, or when a lung gets tapped.

She greeted me with a loud and familiar reunion voice, saying my nickname, “Cissy,” before she explained the port procedure and the risks of infection and bleeding. 

“It’s time for the port,” I explained. “When it was one treatment a month or so,” I could get away with using my veins I said. I didn’t want a port in 24/7 for an infusion that lasts 6 hours a month. I didn’t want the invasiveness of a medical device being parked in my body reminding me I’m a patient. Til now, as long as I stay hydrated and don’t overdose on coffee before treatment I could always get a vein to show for the nurse. 

Now that my treatment will be weekly, and inpatient, I tell her it’s time. Plus, I said my veins are shot, showing her both of my arms, like a student showing the homework to the teacher, making sure she can see the bruises on each crease of the inside elbow where needles were attempted, and then the wrist where the little hole looked like a dartboard with the dart removed but with a circle of reddish-purple surrounded by another circle of yellowish-green left as proof of a bullseye. 

“Good call,” she says. “Many patients love having a port,” she said. “It can make things much easier.”

“I hope so,” I said, and then we chatted about my daughter, at college, and my cousin, who is on the Married at First Sight show. 

I’ve been to the doctors more in the past two and a half years than all of my life combined but the last two weeks have been among the most jam-packed of all. I had a Pet scan, a cat scan, an eye exam, a brain MRI, an EKG, a chest x-ray, multiple labs, an echocardiogram, and a Pluerx procedure surgery so I can remove the fluid from my right lung at home. As the PleurX bottles box reads, “More living rooms and less waiting rooms,” or something like that, and finally, a port placement to finish them all off. 

My oncologist had called me at home on Weds. night to say he reviewed all the results and I got a spot in the trial. 

I GOT ACCEPTED INTO THE TRIAL! 

I GOT ACCEPTED INTO THE TRIAL!

 GOT ACCEPTED INTO THE TRIAL!

It was not guaranteed. I had been on the waiting list for a while but all spots were filled. Once one opened, I had to clear several hurdles and do a lot of baseline testing. I have to show just the right amount of cancer progression, enough to warrant treatment, but not too much growth, such as mets to the brain (mets stands for metastasis). 

I have to be hopeless enough that no standard line of care is superior but not so bad that I have less than 3 mos. left to live. And while the chemotherapy drugs can damage the heart, kidneys, liver, nervous system, and blood counts, they have to still function well enough to endure the rigorous and experimental trial schedule combining two drugs. 

I was not sure I even wanted to get into the trial. I have mixed feelings about modern medicine. I know trials can lead to breakthroughs and occasionally cures, but sometimes patients are just guinea pigs for the pharmaceutical companies trying to determine what maximum tolerated dose is useful but not fatal. Most new drugs give patients days or weeks and maybe a few months and come with a lot of side effects for that privilege. In fact, one the “adverse events” possible in the trial I will be in is death. I’d never considered death an “adverse event” before now. And even when one is terminal, it’s hard to sign off on risking my death while trying to save or extend my timeline. 

Plus, I’m usually resistant to drugs and medicine. I don’t even like to take two Tylenol when one or none might work. But with ovarian cancer, the standard of treatment is a standard of failure so trying something new (as well as all the alternative and complementary approaches) is basically required. 

My cancer high-grade serous ovarian cancer (HGSOC) is the same type my Nana had in 1988. My aunt took care of her and I sometimes helped, part-time, while a college student. Unfortunately, the outcome and overall survival for my ovarian cancer today are almost as dismal for me now as it was for her 3 plus decades ago. The mortality rate in the first year after diagnosis is still 20% and the mortality rate at 5 years is less than 50%. Anyone with this diagnosis who is alive for 8 years is considered a “long-term” survivor as 85% of patients die before getting to ten years past diagnosis.

There are always outliers and the amazing few who defy all odds and statistics. I love learning about them and hearing from them because we all want to be them. With some cancers, you can find people who have lived decades after standard treatment or who skipped the standard of care (surgery, chemo and/or radiation) who have still lived long, well, and with moderate health. Unfortunately, I’ve found not one living example with advanced HGSOC.

When I hear people complain about getting old, how hard it is to move around, or work, when one is 60, I keep my mouth shut and my port open.

Medical Update: I GOT INTO THE TRIAL!! I’m nervous and excited. It’s official. BTW: the trial is officially, “A Phase ½ Trial of REGN4018 with Cemiplimab,” and begins a week from tomorrow! All the tests, procedures, and prep are done and I have a week to rest, recover, and have fun. I’ll share more about the treatment, and what it’s like when I know more.

THANK YOU for ALL so much for the love, concern, calls, emails, gifts, free-writing, and all the practical and emotional support! I’m so grateful and feel so loved and cared about!!! It’s humbling and amazing!