The following is a speech I gave in Buffalo in support of Medical Aid in Dying Laws for New York State
I’m a wife, a mother, a daughter, a sister and an aunt. I’m also a supporter and advocate of Aid-in-Dying laws in NYS and I’d like to tell you why.
In August of 2013, I was diagnosed with Stage 4 Metastatic Breast Cancer. I went to my Doctor for what I thought might have been a kidney infection but an MRI revealed I had a tumor on my spine so large that it was compressing the nerves causing me the constant pain I was feeling. It was 1mm away from my spinal cord. It also showed a tumor in my ribs. It wasn’t until after the PET scan that we learned that the primary tumor was in my right breast. It was shocking, because 9 months earlier I had had a clean mammogram. I was 43 and I had terminal cancer.
There wasn’t a question then or now of how I would treat this cancer. Despite the median lifespan of 36 months, my mind set is that I will do whatever treatment options my Dr’s recommend until I’m physically unable or there just aren’t any more options or clinical trials available.
Having Stage 4 Metastatic Breast Cancer means that I will always be in treatment. I will stay on whatever treatment plan is working until it fails – and by fails I mean that we will see the cancer spreading on a PET scan or I can no longer physically tolerate it. I’m currently on my 4th treatment plan.
To date, I’ve had radiation to my spine and ribs, my Ovaries have been removed and 2 breast surgeries. I receive 3 monthly injections – 1 to increase my bone stability and 2 injections to supress what’s left of the estrogen in my body (estrogen fuels my cancer). I take an oral Chemo pill that affects my blood counts and at times makes me want to sleep for days and I take a few other medications to help with the side effects from the Chemo.
As you can imagine a diagnosis like this sends your mind into overdrive. I began thinking of things I thought were decades away like “I’m going to need a will”, “What do I want my funeral to look like”, “I need a Health Care Proxy” and “Who will take care of my son.” I had a lot of conversations with myself in bed at night. Of all these decisions I’d have to make, I already made up my mind about one very important decision: How I want to die.
I did a lot of research and asked my doctors a lot of questions. The way Metastatic disease works is that once it figures out how to get around a particular treatment, it continues to travel to distant organs. In my case, it began in my bones so the next major organ will either be my lungs, liver or brain. That’s when it gets harder to treat. Ultimately, I could end up suffocating if my lungs become too compromised. If my liver fails I’ll be unable to eat and be in horrible pain. If the cancer travels to my brain I will suffer seizures, uncontrollable migraines and could lose things like my memory, sight and speech. Quite frankly, none of that is OK with me.
I remember being with my Aunt when she was in hospice. She had pancreatic cancer. Seeing her so medicated that she was unaware of anything and anyone was awful to me. There were times she writhed in pain and was unable to communicate. She lingered for 2 excruciating weeks. That was not how I wanted to die.
As I look back over my life; my greatest accomplishment without a doubt is my Son. He’ll be 17 this summer. No question, my Son is the reason I do and will continue to do whatever I have to in order to stay alive. He’s the reason I take the Chemo pills that cause me the constant fatigue, headaches and nausea. He’s the reason I happily get the injections that make me cry when they stick the two 3 inch long needles into my muscle that I can feel for days after. And he’s the reason I will keep going and never say “I can’t” or “It’s too hard”
Since my diagnosis we’ve gone on some really nice trips and had some great experiences. It’s all about making memories now. The one memory I’m absolutely positive I do not want to leave him with is my painful and lingering death. I don’t want him to look back and see me in a bed, unable to communicate, medicated and waiting for my body to give out. That would cause me unimaginable stress.
You may have heard or read or even feel that Aid-in-Dying is suicide. I’m here to tell you that it’s not suicide at all.. Aid-in-Dying is about having end of life options. I want more than anything to live another 40 yrs but the reality is that I won’t. I will do whatever treatment options are available to me and any clinical trials I qualify for. I will continue to utilize palliative care team for pain and comfort, but when that stops working; that’s when I want another option.. My terminal illness has taken so much from me already and ultimately it’s going to take my life. I want to be able to choose how I will die when my time comes. I don’t want my illness to make that choice for me. I need my representatives in the State Legislature to make sure I have that choice in the end. If you also want to have a choice, I encourage you to contact your State Legislator so you can be heard.