Sharing My Story With Compassion & Choices for the NYS Aid-In-Dying Campaign

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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.

Thank you.

Door #1, 2 or 3

I have been on a medically approved break from my Aromatase Inhibitor since June. Since then I have been able to lose 15lbs and I’ve felt so much better.

While I’ve been on this break I have been seriously considering making this break permanent.  Whelp, my Oncologist got wind of my thoughts and wrote me an email. She was very stern and let me know that this was only to be a short break and that at our next meeting we would discuss other options.

Fuck

Last Wednesday was my appointment with my Oncologist. I repeated my thoughts and told her that quality of life was becoming a higher priority for me. Let’s face it, at some point I will have progression. This will happen on or off meds. No one knows when this will happen. I’m very comfortable rolling the dice at this point.

BUT…I did hear her out.  My Oncologist offered me 3 different Aromatase Inhibitor options: Anastrozle, Toremifene or Raloxifene.  The first two have the same side effects as what I was on but includes blindness and urinating blood. FUN!!  The other includes more weight gain, swelling of hands and feet and more.

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Her other option was sending me to a surgeon that would give me a lumpectomy. She would only feel comfortable with my choice to stop meds if I removed the cancer from my breast. She told me that the MRI I had in June did show uptake as did the deeper tumor that we were unable to biopsy.  My metastasis bypassed my lymph system and went directly to my bones so she explained that doing nothing and taking no meds is like playing a game of Russia Roulette with a loaded gun. It wouldn’t be a matter of IF but WHEN.

Fuck

Tomorrow, I see the surgeon. I will discuss with her the lumpectomy and I will also ask about a mastectomy as well.  I know a mastectomy might be overkill and a much harder surgery but if I’m going to consider surgery I would be remiss in not covering this topic.

Then I have to make a decision:

Door #1: begin a new Aromatase Inhibitor
Door #2: Lumpectomy  or
Door #3: No surgery, No meds

I’ll be honest and I know I’ll catch shit for this but, gun to my head, if I had to decide right this second…I choose Door #3.  Here’s why….

What if I don’t progress for 5, 10, 15 yrs? What if I never progress before something else does me in? What if??

After how completely shitty I’ve felt taking Exemestane and the 4 weeks of Letrozole, I’m not in a hurry to go back to that. Yes, I know chemo is much, much worse. But who knows when I will have to pony up to that bridge and (more brutal truth) I’m not certain I will decide to do chemo. There are so many considerations that will go into THAT decision. First and foremost will be what age and where my son is in his life.

I realize I may catch all kinds of shit for my lack of drive and perseverance when it comes to my treatment but please understand, I’m in a different place in my life. I don’t have young children, I’ve already had some amazing experiences, vacations and career. I’m pretty content and whether I have 2 yrs or 20 yrs, I don’t want to be sick, hurting or be a drag on my family.

So….this is where I am. I have a feeling I’ll have to decide sooner than later and by that I mean this week.

I will update again soon…