end of life choices

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.

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

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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!

Words Matter

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I had a big week last week. It started in Albany.

Assembly Bill 2383/Senate Bill 3151, the New York Medical Aid in Dying Act, was introduced for the 2017 legislative session on January 20th and on Monday, January 23rd a Press Conference was held at the State Capitol to formally announce it.

I was asked to speak at the Press Conference organized by Compassion & Choices NY.  So, without hesitation, I boarded the train headed to Albany at 5:40am last Monday and thankfully arrived right on time at 9:50am.

We hit the ground running with two meetings with lawmakers & their staff to talk about the legislation and answer any questions they might have. My job in these meetings is to tell my story and why the Aid in Dying Act is important to me. Those that know me, know the two big reasons – I don’t want my Son to remember me when my time comes to transition out of this world and I don’t want to suffocate if the cancer reaches my lungs, starve if the cancer reaches my liver or suffer seizures, hallucinations or not know who my Son is if it reaches my brain. One thing I had with me that I didn’t have with me last May when I was in Albany – a picture of me and Adam. I wanted lawmakers to SEE my son and not just hear his name. They need to connect his face with his name and they did.

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The first meetings were scheduled with Senator Bailey and Assemblymember Joseph Morelle. Many times the actual lawmakers cannot attend the meetings but have staff members attend for them and get briefed on what took place and the important parts of the meeting.

I know I make an impression when I can see the tears in the eyes of those we meet with and that’s all I can hope for when I go into these meetings.

At 1pm we gathered in the Senate Chamber for the Press Conference. I was to speak right after Senator Diane Savino and Assemblywoman Amy Paulin. Kind of hard acts to follow but I accepted the challenge. There wasn’t as many people there from the opposition but it felt like there was definitely more representation from the media. I was more nervous this time around than I was last May.

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Photo: Paul Buckowksi/Albany Times Union 

I was told I did well and my speech was exactly what people need to hear for why this legislation should be an included with end of life options, although I felt myself shaking and stumbling over words that I knew so well and had spoken so many times before. Contrary to the reputation I have of being an outspoken advocate, I don’t like speaking to groups of people. Throw in news cameras, microphones and spotlights and I want to run for the hills!

My day wrapped up with Corinne Carey, Director of Compassion & Choices NY, and I having a follow-up TV interview with Liz Benjamin, host of Capitol Tonight on Time Warner Cable News.

This was what I was MOST nervous about. Last May when I first met Liz and we taped a segment for her show, I was told which camera to look at and how to position my body and which camera NOT to look at. Well, you know how well that works out when you’re told NOT to look at something??? Liz makes it look so effortless while being amazingly professional. Being my own worst critic, I was terrified of making the same mistakes this time around but I think I did a better job. What do you think? You can watch here.

It was a long day but it was a very good day. It begins what I hope to be a successful year of advocating and talking to as many lawmakers as I can about why Aid In Dying is important to me and other terminally ill adults like me. I’m also hoping to change the narrative when it comes to Aid In Dying. I want to remove the word ‘suicide’ from the conversation. I am NOT suicidal. Terminally ill people are NOT suicidal. I want to live, WE want to live. We go through any and all treatments in order to stay alive for as long as possible.

Talking about death is uncomfortable for a lot of people but it’s a conversation that should be had much sooner than later. There is nothing wrong with wanting to have as peaceful transition as possible, if that’s what you want to have. The dying process doesn’t have to be painful. It’s doesn’t have to be filled with suffering if that’s not what the person wants. Death, if you are able to, should be something that you have some say in – whatever that is.

When my time comes. When I run out of medical options and clinical trials, I want to have the option of Aid In Dying. I don’t believe that hospice will be enough to keep my pain under control and I don’t want to be medicated to the point that I cannot communicate with my Son or my family. I don’t want to be under Palliative Sedation because I may not hear my family if they talk to me or feel them if they touch me. Most of all, I don’t want Adam to watch me and my body go through the dying process. I don’t want him to see me in pain. I don’t want him to see me struggling to live. I don’t want him to remember me that way.

I want Adam to remember our trips we took. The fun times we shared together. All of the happy memories he has of us over the years. THAT’S what I want for him to remember.

The week wrapped up with an invitation to be on The Brother Wease Radio Show on 95.1. and an interview with Cristina Dominguez from YNN News that you can see here.

I have called in to radio shows in the past but I was in the studio for this one. It was my first time meeting Rochester’s iconic radio personality! Deanna King and Paul Gugglielmo (PaulyG) were also amazing and super sweet. You can catch the Facebook live video from their page here.

That’s why I will continue to advocate for New York to be the next state to have Aid In Dying laws. That’s why I won’t give up or won’t let anyone stop me.

I am so grateful to Compassion & Choices NY and especially Corinne Carey for allowing me a platform and to be able to advocate with them. If you feel the same way about Aid In Dying laws and want to get involved or help, I encourage you to do so!!  Please visit the following links:

Compassion & Choices NY

Donate to Compassion & Choices

Compassion & Choices  – Main Site

A Big Win For Choice

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Today the New York State Assembly Health Committee voted 14 to 11 in favor of the Medical Aid In Dying Act. This historic vote comes less than 2 weeks after the Bill was introduced by Senator Diane Savino and Assembly Woman Amy Paulin.

I am very proud to have been part of the beginning process of this Bill becoming a legal option in New York State and I hope to continue working with Corinne Carey and Compassion & Choices for as long as my health will allow.

Here is the link to the official press release from Compassion & Choices:

http://www.compassionandchoices.org/medical-aid-in-dying-act-wins-swift-assembly-committee-vote/

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.

The Murky Waters Have Become Clear

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It’s been a very rocky month.

Since my second breast surgery and learning of progresion in my ribs, I’ve started a new treatment of Ibrance/Faslodex and had another PET Scan.

Going into the PET Scan, we were expecting to find further progression in my lung and liver. I was very relieved to learn that was not the case. However, there was ‘intense uptake’ in my tonsils and in two quadrants of lymph nodes in my neck. I needed to know if this was the beginning of something else so I saw my ENT. I was again relieved to learn that, for now, I’m OK. Having my tonsils out should be considered but as long as it’s not an immediate concern they are staying put.

While all this uncertainty was playing out I had a lot of time to think of how I see my future playing out and how I want things to be. It renewed a belief that I’ve had since my diagnosis and that is I don’t wish to have this disease consume me when my treatment options end. I want to die on my terms and when I determine its time.

Last year I contacted Compassion & Choices and worked with them on an Opt ed piece that was published in my local newspaper November 2015. I was later interviewed by local media about the Death with Dignity when New York State law makers announced they wanted to introduce legislation.

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This past Wednesday I was interviewed again when Senator Amy Paulin announced she was joining the cause for Death with Dignity legislation after a family member suffered thru a cancer death.

WHEC News 10

I feel like this is a renewed direction I need to go in. Not only for me but for those that also want to have this same choice. And that’s what this is. It’s a choice. It’s not mandatory. Its not something to get talked into. It’s an option. It’s something you can decide NOT to do too.

Death with Dignity is also NOT sucicide. It’s very important to me to change the stigma. Death with Dignity is choosing to die on your own terms when you don’t have the option to live. Suicide is taking your life when you are otherwise healthy and have more of a mental/emotional issue.

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Some people that oppose this option do so because of religious reasons or because they fear that the person will somehow be taken advantage of by others. In other words, they’d be ‘talked into’ it because it’s the ‘easy’ option for the caregivers.

Growing up Catholic, I’m very confident and comfortable knowing that MY God doesn’t want me to suffer and more importantly wouldn’t want my Son to watch me suffer and die. MY God wants me to leave my Son with all the best memories I can and non of them include me laying in a bed wasting away or struggling to breathe.

It’s OK if this isn’t right for you. It’s OK if you prefer the biblical, regular way to die. That’s why this is a choice. MY choice. And I am going to fight for this the best I can so this is an option I can choose from.

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