lobbying

And God Laughs

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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.

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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

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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!)

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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.

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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!

Advocacy Stampedes in D.C.

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Melissa McAllister, Me & Melanie Childres representing The Underbelly

As a metastatic breast cancer patient and advocate, I try to use my voice in many ways to bring awareness to the fact that metastatic disease is woefully underfunded. I’ve been lucky in that I’ve been able to travel to be with friends and other fierce advocates because, let’s face it, there is power in numbers.

Last year, I traveled to Washington, DC to participate in the 1st Annual Die-In at the United States Capitol with Metup.org. The event was held on October 13th, Metastatic Breast Cancer Awareness Day. It was a symbolic visual event where advocates and metastatic breast cancer patients gathered on the lawn, lay on the ground and ‘died’ just as 113 women die every day of this disease. The Die-In was a bold vision that came from the brilliant mind of Beth Caldwell during a Metastatic Convention in Philadelphia in 2015 in which I was in attendance. You can read about that here.

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This year the event was joined by other significant partners such as:  METAvivor.org, CancerlandLandtv and Refinery29 and was renamed #StageIVStampede. We found out just days before that Oscar winning actress Mira Sorvino would also be attending and supporting her longtime friend, Champagne Joy. The significance of this is unprecedented as no other celebrity or voice of such magnitude has ever lent their voice to the Metastatic Community. The typical voice of a public figure with regard to Breast Cancer is the standard “pink” rhetoric of ‘stay positive and you can beat it’. That was not the message Mira had for lawmakers or the media.  And OMG – we met her and she is AH-mazing!

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Melissa McAllister, Champagne Joy, Susan Rahn, Mira Sorvino & Melanie Childres #Stage4Stampede, Washington D.C 

I attended the event representing The Underbelly.org, the online magazine dedicated to changing the breast cancer narrative I’ve talked about in previous posts, along with my co-editors and magazine founders, Melissa McAllister and Melanie Childres.

The day began at 8:15am. Everyone gathered at the Washington Monument to organize, and then began a peaceful organized march with signs in hand to the west lawn of the Capitol building. During the march I took pictures of those walking, hugged friends we came upon and even did a live feed via Facebook from The Underbelly page! Halfway to the Capitol we were met by a reporter for Refinery29 who asked to speak with us about why we were marching and why the was significant to me, a Metastatic Patient.

Once at the Capital we organized, heard speeches by MET UP co-founder, Beth Caldwell and then we laid down on the grass as a bell tolled 113 times representing the 113 women that die every day. As it was the previous year, it was emotional.

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Melanie Childres, Melissa McAllister & Susan Rahn – Dying for a Cure – Photo By Kipp Burgoyne.

After the last bell rang, as people began getting up, people embraced and the love and the promise of hope filled the air.

Many went on to hear speakers like METAvivor President, Beth Fairchild, METAvivor Co-Founder CJ Corneliussen-James, and Patricia Steeg from National Cancer Institute in the Cannon Building before breaking off into groups to meet with lawmakers. Their purpose was to inform them of the importance of allocating more funds to metastatic research and sharing personal stories is key in being successful.

Any lawmaker would be hard-pressed not to be emotionally moved after hearing personal stories from these Stage 4 advocates as to why research is important to them.

It was a good day seeing old friends and meeting new ones. It’s always a treat to meet in real life, people you interact with online on a daily basis and give them that long, overdue hug.

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We kept our Underbelly readers updated throughout the day with live Facebook updates from various parts of D.C. while we literally logged over 9 miles of walking. I’m willing to bet we helped Starbucks stock just a tiny bit that afternoon.

We ended the day taking pictures of the sun setting over the Capitol, the Washington Monument and the Smithsonian before taking the train back to our car.

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I’m already looking forward to next year’s event but truth be told, I’m secretly hoping it won’t be necessary because our lawmakers heard us on October 13th.

The Day We Died At The Capitol

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I attended a Metastatic Breast Cancer conference back in April in Philadelphia hosted by Living Beyond Breast Cancer.  It was a memorable experience for many reasons. The most notable was that a new movement was born from that conference.

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MetUp is the brainchild of fellow mester Jennie Grimes. As was the rest of us, Jennie was sick and tired of watching our friends die while the public at large and our own government does nothing and wanted to begin a movement that will rattle cages and make people stop and rethink research priorities.

Also, during that conference, Beth Caldwell put her admiration of the women’s sufferage movement into a modern action. We were going to ‘Die’ at the conference. We gathered 110 women and laid them down in the hallway and a moving ‘eulogy’ was read. Not just any eulogy but one that told of our anger and distain for the lack of any real progress toward a cure and that losing 113 people every day was unacceptable.

Since that day we began working tirelessly to stage another Die-in that, we hoped, would get more attention and really rattle bigger cages. Washington DC was that cage. Through the efforts of many but specifically the core members of MetUp, meetings were set with some key members of Congress and the plans were being made to host our first Die-in as an advocacy group.

Yesterday, folks began to gather on the West lawn of the Capital. Signs were brought of loved ones lost and those that couldn’t attend.

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The buzz in the air was that of emotion and excitement. Meeting people that I only knew on-line and putting faces with names was so surreal. And they were just as excited to meet me as I was to meet them!

Papers with numbers were handed out in preparation of the Die-in. People began to get into groups and Paige Rosllio sprung into action. Immediately, Paige began to take charge and call out groups of numbers.  It was really happening.

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When every last person was in place, Beth, Paige, CJ Corneliussen-James and myself stood near the fence adorned with posters of every one with metastatic breast cancer living and dead. And it began…at the stroke of Noon.

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After a brief thank you to all in attendance and reading the MetUp Mission Statement, I introduced Beth Caldwell. Beth’s speech was inspiring, devastating but most of all, from the heart. Those laying down were quietly sobbing.

I then introduced CJ Corneilousen James, Co-founder, President and Director of Advocacy of METAvivor. CJ spoke of METAvivor’s mission and why it’s so important to advocate for more research funding for Metastatic Disease of all cancers.

Then we died.

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Paige Rosllio read our eulogy just as she did in Philadelphia. There was a moment of silence and then we all sang “The Circle Will Be Unbroken”. Paige rang a bell 113 times for the number of people that would die that day and every day while there is no cure. After thanking everyone for coming, the Parks Department and the District of Columbia we came together to hug it out.

It truly felt like an historic event. All of us coming together for a cause we all feel so passionately about and making it happen was electrifying.

There were meetings with lawmakers on the hill that afternoon. They are going on the rear of the week.  Those still in DC really feel they are getting thru to the lawmakers that can make this change everyone needs. Asking for 30% of funds going to Metastatic disease is NOT unreasonable.  It will make a huge impact.

There will be more Die-in’s going forward. We will keep making noise and speaking our truth until we are heard and the changes we need are made. We won’t stop. We can’t stop.

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If you’d like to keep on top of what’s happening with MetUp, please follow their website: metup.org, or their Facebook page