I watched my Uncle Eddie struggle with MS for 25 years. The last five were a horrific testament to the corrosive power of the disease on the body and mind, and may never have been witnessed if not for the medical community’s efforts to extend life.
My mother was diagnosed with B-Cell Lymphoma at 74. Her first time around with chemo was hard. It aged her 10 years in nine months. My once vibrant, indomitable mother was a tired little old lady, and she was bald. I remember going to a wig store with her and my sister one Sunday afternoon. We walked from her house a couple of miles in the warm L.A. sunshine. It took us over an hour. Until cancer, my mom walked five miles a day, five days a week at the gym in less time. In the store my sister and I tried to keep it light, trying on wigs and getting silly. But I caught my mother looking at herself in a mirror with a short brunette wig on. She stared at her reflection then tilted her head and that’s when I noticed her crying. She put her hand to her mouth as if to stifle an anguished scream then caught me watching her. I looked away. It was one of many things I wish I hadn’t seen as I watched my mother battle her disease over the next 24 month, grasping at disgusting, degrading and often debilitating treatments in hopes of extending life.
I’m now watching my father-in-law go down the same path battling brain cancer. We were on Fisherman’s Wharf sharing the view while awaiting the ferry a few weeks after he was diagnosed. I asked him how he felt and he said “afraid.” His normally passive expression took on a look of perplexed panic which seems permanently plastered on his face since I noticed it that day. In the past five years he’s had two brain surgeries, three different chemo regiments including pin-point radiation, and now is part of another clinical trial experimenting with more unproven medicine. Nothing is working. Tumors keep growing back, yet he persists in trying to extend his life regardless of the constant nausea, pain, and incapacitating fatigue, the price of most cancer treatment methods.
While I understand the necessity of medical treatments—the breakthroughs they produce to battle, and sometimes even cure disease, the idea of being a guinea pig in this process is disturbing at best. And watching loved ones suffer the slings and arrows of our education is beyond disturbing, it is heart wrenching.
Very few doctors lay it on the line about the success of treatments for terminal patients. It’s not in their, nor the patients interest to do so. Doctors and researchers need funding for their study. And what is the point of telling a willing participant that in all likelihood they won’t live any longer, possible shorter with the stress on the body from being constantly ill while following the prescribed procedure? Even provided this information, most of us would cling to hope and clamor to go along with the program.
But how much is enough? Is it, in fact, our obligation to humanity to try all that’s available to extend life? When, if ever, is it justified to say, STOP. I’m done.