Now that cold weather has settled in, my going to bed routine means leaving my PJ bottoms on because the sheets are so cool. I go to bed bundled up, complete with my Noddy hat and my pink fuzzy socks. Then between 2 and 3 a.m. the heat kicks on: my internal thermostat erupts and a full-out night sweat ensues. In a sleepy fog, I take my hat off first, then my socks, to let the heat out on either end. Sometimes that does the trick. After one of these first events, I woke up in the morning with nothing on and the sheets thrown off. It caught me off guard. My memory went back to going to bed all covered up and tucked in. The middle of the night stripping had slipped my mind. I was shocked to wake up and see my PJ’s not on but in a pile by the bed. Bill, hearing me rustle around, turned over, saw me, and from beneath our heavy comforter said, “What ARE you doing?” I really didn’t know. “I guess I got hot.”
Another side effect of chemo: early menopause. This night sweat stuff isn’t new to me. When going through infertility treatments years ago, some of the meds gave me hot flashes and night sweats. That was temporary. This, well who knows how long I’ll be stripping in the early a.m. It’s accentuated even more due to the medicine I’m on in the trial. It’s called Triptorelin, and it wipes out hormones produced by my ovaries. The type of breast cancer I had is estrogen and progesterone receptive. Basically that means these hormones feed this kind of cancer. So by knocking the hormones out of my body, that’s one way of diminishing the chances of the cancer returning.
The silver lining in this is the fact that endometriosis is also fed by estrogen. So now after 30 some years of come and go pain from endometriosis, that too will stop. The physical pain I’ve experienced with cancer through surgeries and chemo side effects has not touched the pain level of endometriosis. Endometriosis is a result of tissue from the uterus escaping and settling elsewhere in the body and releasing fluids every month which have nowhere to go.
At the height of an endometriosis outbreak, over 10 years ago, I had flown to Seattle to join Bill for a weekend after a business trip. We were on separate return flights home. On Sunday morning I was going to poke around downtown then catch my afternoon flight. Bill had a morning flight. Plans changed when I woke up. The pain was so bad I couldn’t walk. I reached for my Advil bottle and took four pills. I scooted Bill off to catch his flight, promising I would be fine after the Advil kicked in. I can’t imagine how unconvincing I was curled up in a ball on the couch. Every moment of “pain” I have, I hold up to that day, and thus far, nothing has come close to it. Even this all-body achiness and the fleeting pains chasing me around for four days aren’t doubling me over like the pain from endometriosis.
Little research has been done on endometriosis. I picked up the Boston Globe a few days ago and saw a woman who I believe will someday be a hero for women suffering with this. She has started a research lab at MIT in Boston, focusing on endometriosis. After suffering with it herself for years, after 15 surgeries and capping out at 24 Advil a day, she’s decided to delve into the problem. I can’t wait to see what she does: I’ve had four surgeries and capped out my Advil intake at 18 per day. This woman, Linda Griffith, is a professor of biological engineering and mechanical engineering. I hope she quickly makes up for the 20-year draught of research on causes and treatment of endometriosis. It’s painfully debilitating and often misdiagnosed. Many women silently struggle with it.
I’m not sure how I got here from my PJ discussion. But here I am.