compassion & choices

And God Laughs

stickit2stage49 Comments

I should be sleeping. It’s 2:33am. I have to be up in four hours.

I am in Albany as part of a campaign for New York’s Medical Aid in Dying Act. The campaign, 50 Reasons by Compassion & Choices, highlights 50 stories of real people and their reasons why they support the bill. Its genius. The people included aren’t just terminally ill patients; they are members of the clergy, doctors, caregivers, loved ones. They all have personal stories; reasons that provide their perspective.

Today is my day to share my reason.

Normally, I can do this with my eyes closed. I’ve been coming to Albany and have been involved in this advocacy for years. I’ve blogged about it in the past. My reasons then were very clear. I didn’t want my son to see me actively dying, lying in bed for who knows how long and remember me that way. I was working hard to create special memories for him. I wasn’t going to have the end of my life strip that all away. While that’s still true, he’s much older now. There is another reason that has moved to the top of my list.

(This is the most unnerving coincidence – I know God is laughing)

Exactly one year ago, I published a blog What The Fuck Is The Reason. My dear friend Melissa died the night before from metastatic breast cancer. I had sat with her family, her best friend Chrysta, and watched countless others come and go as they checked on her or said their goodbye’s. There were a few nights I stayed with her Aunt and close family friends so Melissa wasn’t alone.

Facebook Memories Suck

Melissa lingered for nine days. There were times she was in pain but unable to communicate beyond calling out. She was visibly restless, and fluid was building up in her lungs. It was incredibly frustrating for those of us sitting there bearing witness. We were mad. We were upset. We felt helpless. I can’t fathom how Melissa felt being trapped in a body shutting down and not being able to communicate what she needed.

Death is not how it is in the movies or on TV. It’s not a natural, peaceful, falling asleep death. If you’ve never sat bedside for anyone while they died and thought that’s what it was like – you’re greatly mistaken. Cancer patients who have been on pain medications for a long time have it the worst. There is a level of tolerance that develops. A false understanding exists that with the right ”formula” of morphine, any pain can be managed. That may be true for some, but not everyone. The line between palliative coma and death is razor-thin.

Those days and nights I spent in Melissa’s hospital room gutted me; not to mention how it impacted her family, those that loved her and her sweet daughter. I don’t ever want to be trapped in my body like that. To put my loved ones through that. Those nights reinforced to me how important it is that there be Medical Aid in Dying laws in every State. Everyone with a terminal illness should have access to this option if they want it.

It’s not a religious issue – It’s a personal choice.

It’s not suicide (OMG It’s NOT) – I want to live. Cancer has other plans.

I think I always knew about the correlation in dates between yesterday/today and last year. I just never let my mind REALLY go there until it forced me. Always the middle of the night. Thanks, brain. While it will be familiar, it will also be different as I see staffers and lawmakers. The tears I know will come will be about Melissa.

I’m livin’ the dream, Melissa.

Livin it for you babe.

Two hours until I have to be up…..

Nevertheless We Persist – Lobby Day 2017

stickit2stage41 Comment

As you my remember, the NY Medical Aid in Dying Act was re-introduced this past January and I traveled to Albany to be part of the Press Conference and to speak with lawmakers so I could share my story about why I am in support of this legislation. You can read that blog here.

Although the Bill was actually ‘birthed’ back in the spring of 2016 and passed through the NYS Assembly Health Committee in May of 2016, the session ended and essentially everything had to start over in the New Year.

Yesterday, was the Spring Lobby Day in support of Medical Aid in Dying for New York State organized by Compassion & Choices. Supporters from all over the State and storytellers like myself came to the State Capitol in Albany to meet with lawmakers and their staff. Our mission, which we eagerly accepted, was to provide facts about the Aid in Dying Act and answer any questions they may have. MY job in particular was to share why I wanted Aid in Dying to be an option that I could choose at the end of my life.

Lobby Day kicked off with a Press Conference. There were many powerful speakers that spoke in support of Aid in Dying:  Janet Green, who lost her partner to brain cancer, Lindsay Wright, who lost her husband to cancer, Dr David Pratt, former Schenectady County Commissioner of Public Health Services, former Republican Assemblywoman Janet Duprey and Assemblywoman Amy Paulin who Co-wrote the Bill.  I was also asked to speak. Corinne Carey, Director of Compassion & Choices NY gave her opening remarks and introduced each speaker.

Lobby Day Albany Capitol
Photo: (Matthew Hamilton/Times Union)

It was also captured on Facebook Live if you’d like to see the Press Conference here:

One highlight of my day was earlier in the morning when I was able to get a few moments with Senator Diane Savino, the other Co-author of the bill. I wanted to thank her once again for working so hard on this for patients like me. This woman gets it done in Albany. I actually got up the nerve and asked if she would be so kind as to take a selfie with me! SHE SAID YES!! I love how we happened to be color coordinated too!

(Assemblywoman Palulin – You’re next!)

18320703_1379414922105518_1365345665297585213_o
Senator Diane Savino and ME

This was my 3rd time in Albany. I wanted what I said to Lawmakers/Staffers to be different from in the past. Previously, I spoke more about my illness and what it was like to live with terminal cancer. The pain, the treatments, the surgeries, the medications. This time it was about my personal convictions as a rebuttal to the vocal opposition that they will likely hear or have heard. I also included a description of how I envision my last day to be having this option available. I wanted to provide a mental image of how I could give my friend and family one last GOOD memory before I go. Death doesn’t have to be something we don’t talk about. We NEED to start talking about it. Death is as much as part of life as living is.

18341656_657913454400981_1948939066593443402_n
Photo: Corinne Carey, Compassion & Choices NY

Over all, it was a successful day. There were many volunteers that came out to walk the halls and meet with lawmakers but there is still much work to be done. While there is overwhelming support for Medical Aid in Dying in NY by the people, those of us that have been walking the halls of the Capitol have more lawmakers to speak to. It’s critical that they hear personal stories. EVERYONE has a family member that had a death that wasn’t what they wanted. They were in too much pain. They were crying out. They begged to die. THOSE are the stories that lawmakers NEED to hear.

Regardless of anyone’s personal opinion of Medial Aid in Dying, this should be an option that the patient chooses IF they want it. At the end of the day, how I die doesn’t impact anyone else other than ME and MY family. No one should insist that I die or YOU die in a way that is anything other than what we wish it to be.

If you would like to get involved and also share your story with lawmakers with me – please visit: Compassion & Choices NY and GET INVOLVED! If you live OUTSIDE of NY and want to get involved with Medical Aid in Dying in your State, please visit: Compassion & Choices to sign up to volunteer!

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

stickit2stage44 Comments

image

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.