Today Holly asked me two questions, the first was “Do you think it is wrong to end things early?” This surprised me to some extent because she had never mentioned the possibility before and also because just last week the “End of Life Option Act” had been signed by California Governor Jerry Brown. I am sure that she did not know that the California Legislature had approved the measure nor that it had been signed into law. This legislation made California the 5th state to enable physicians to provide life-ending drugs to terminal patients. I don’t know if there are stipulations (a certain amount of pain, a terminal diagnosis, etc.) but the law does not go into effect until January 1, 2016, 2-1/2 months from now.
We talked about her quality of life, and how we hoped it could be improved, but we didn’t know how much. We talked about pain (she isn’t in pain) and religious belief (her father was Jewish but she does not practice Judaism). We had talked before about what we thought happened after death, with the usual unsatisfactory guesses that have plagued mankind from the beginning. I told her the act had been signed and that I would look it up for her. My only advice was that she give the recent medication changes a chance to work and that she discuss this with someone she trusted, maybe one of her brothers. I reminded her that she would be seeing a new oncologist and could discuss it with them. I don’t know what kind of hoops you have to jump through or how you would find a physician to “assist” you in this endeavor.
I couldn’t help but think about how I would approach considering the choice of ending my life before the last bitter hand was dealt. With a terminal illness, you don’t really know how the progression will go. What pain and indignities you will suffer, what your family will go through with you. What may be an acceptable quality of life to one person may be totally unacceptable to another.
Watching my husband of 44 years struggle through 18 months of radiation and increasingly futile chemotherapies had taught me a lot about determination and courage, but also a lot about suffering needlessly. In his case, his initial radiation and chemo completely debilitated him. To my eyes, all of his pain seemed to be a direct result of his treatment, not his Stage IV lung cancer. The noxious drugs he endured cause constant swelling and neuropathy in his feet. The high doses of pain medication made him unstable on his feet and robbed him of the interest in and ability to read. Food became tasteless, the memory of the foods he loved just out of his grasp. He slept a great deal and moved only with great discomfort. His sole occupations became sightlessly watching television and playing hypnotically repetitive computer games.
Although Holly is grateful for having given up the burden of trying to make sense of her finances and her medications and is glad to have someone taking care of her, sleeping 20 or more hours a day; waking only to pee or eat, cannot offer her any solace. She is unable to walk to the bathroom or take a shower by herself. She cannot focus on reading or television, or on a simple conversation for more than a few minutes, and only with the greatest patience for your feelings.
The second question was more confounding. She asked me if she had heard me tell someone that she was not pretty. Of course, I was appalled that she would think I would ever say, or even think such a thing, but I was also taken aback that in this moment of fighting for life and struggling with monumental choices, she would be concerned with her prettiness. Right now, hairless and pumped full of steroids that almost make her eyes slits in her face, she does not look like the fresh-faced Holly of old. She was never glamorous, but she looked much younger that her 54 years (she could easily pass for 40). Her smile was beautiful and her body energetic and lithe. She wore little makeup and cared little for clothes, but her aura was of a free spirit who also managed to be down to earth and practical. Her complexion was flawless (I always envied it). She read broadly, went back to law school at 40, fought off Hodgkin’s disease while still in law school, loved yoga and cats. When her estranged brother was diagnosed with Stage IV esophageal cancer, she brought him from NYC to San Francisco and took him into her home until his death. She took up the fiddle in her early 50s and faced her initial breast cancer diagnosis with courage and optimism. When the disease returned with a vengeance within a year, she faces that, too, continuing to work at home during treatments and telling everyone that “fighting cancer” must be her super-power.
How do you respond to that question? Why would it matter? Many times I had assured her that, while she wasn’t “at her best” right now, all of that could be reversed. Her hair could come back, the puffiness would disappear with the steroids; that she was the same person she had always been. If anything, she was even stronger and braver than she had been before.
She listened to me and then told me she needed to go back to sleep. I left sad and dissatisfied, wondering if she still believed in her heart that I thought she wasn’t pretty.