The ability to choose a compassionate death helps me to live in the moment I have now.
Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
On Friday, July 10, I'll be testifying before the Washington DC Council in support of Councilmember Mary Cheh's proposal of the Death With Dignity Act
. Below is what I will be saying to the DC Council. I can only hope it will help bring expanded access to end of life choices for Washington, DC, residents.
I do not want to die. I do not want to talk about dying. But death is a topic I can’t escape. I have stage 4 HER2-positive breast cancer to the liver. I was diagnosed in January 2012 at the age of 47. I immediately began chemotherapy and weekly Taxol, which led to debilitating exhaustion and neuropathy severe enough that I fell and dropped objects I couldn’t feel in my hands. At my insistence, after five months, my oncologist finally stopped the chemotherapy — luckily the cancer was stable — and I began to recover. Since then, my cancer has responded well to targeted therapies such as Herceptin and Kadcyla, treatments with far fewer side effects, which means I am able to work and have a good quality of life.
I am lucky ... for now.
But cancer is smart. It learns the treatments, and begins to grow again. The downward progression of cancer is predictable. As I move through increasingly toxic treatments, my side effects and pain will become more and more disabling, and my world will become smaller and smaller. If my cancer spreads to my lungs, I will need an oxygen tank to breathe and will have little strength for physical activity. The narcotics I will need in order to control my pain will make it hard for me to function or think clearly and will also lead to severe constipation. The pain and disability will trap me in my house. I will be unable to work, unable to get out to visit friends, and I will become isolated.
Eventually, as the cancer spreads in my body, I will develop ascites or pleural effusion, fluid buildup in the abdomen or around the lungs. The pleural effusion will make it harder for me to breathe. The ascites will cause me pain, make me sick and tired, and also make it hard for me to breathe. The only relief I’ll get is having the fluid drained by a doctor. If the cancer spreads to my brain, I will have vision problems, severe headaches, seizures and possibly even paralysis. All of these symptoms will get worse over time, confining me to a life of disability, pain, fear and loneliness.
Seven years ago my mother had a hemorrhagic stroke. CT scans showed the stroke had destroyed most of her brain. She was on life support. Per her living will, my brother and sisters decided to take my mother off support and help her die. Because this was in Wisconsin, there was no access to aid in dying, meaning all we could do as she died was give her pain killers when allowed. I remember watching her as she died, thinking, “We’re allowed to be kinder to dying dogs than we can be to the people we love.” It was a helpless, sad and desperate experience. I did not want my mother to suffer.
Shortly after my diagnosis with cancer, a gentleman I know whose mother died of the disease asked me, “Are you afraid of dying in pain?” It was a horribly awkward question, but easy to answer. I am terrified of dying in pain. I darkly joke with my cardiologist and oncologist that my goal is to die of a heart attack. I can eat high cholesterol foods, stop exercising, stack the odds for that heart attack, but there is no guarantee a heart attack will come.
Cancer, however, is a guarantee. It has already spread in my body. It’s a death lying in wait, a death of suffering. I am able to end the suffering of my pet and help her gently die. But I could not offer that same kindness to my mother as she died. And I cannot offer that same kindness to myself. I have lived in Washington, DC, for 16 years and I plan on staying here. The promise of aid in dying in Washington, DC, offers me comfort in this horrible situation.
I do not want to die. I will not be anxious to choose death. But when the cancer pain becomes severe, I will be grateful for the charity of a compassionate death. That thought helps me live in this moment now and not think of what will eventually come. Please help the people of Washington, DC. Give them access to aid in dying.
If you would like to find more information on aid in dying, contact the Death With Dignity National Center
or Compassion & Choices