end of life

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

Viewpoint with Ken Rosato

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Just a quick follow up post.

The interview I did with Compassion & Choices New York a few weeks ago, aired last night. I wanted to share it here for those of you that may not regularly visit Facebook or Twitter.

I’m very pleased with how this turned out. Sometimes after editing, an interview can look very different than how it really happened. Not so this time. There was literally no editing done (that I could see anyway).

I’m very appreciative of the way Ken Rosato handled the interview and questions. He was every bit the professional you’d expect while also very understanding and compassionate about the subject matter.

Ken, if I’m lucky enough to have you read this: Thank you SO much for giving Medical Aid In Dying a platform on Viewpoint. You’ll never know how much it meant to me.

Our segment is the second one once you click on the link.

http://abc7ny.com/society/new-york-viewpoint/32277/

The Numbers are Not in My Favor

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At my last update there was concern over my rising tumor marker: CA 27.29. I had my labs done on Thursday and the decision was made to schedule a PET/CT for August 2nd. The rising numbers coupled with my continued weight loss (I’m averaging about 10lbs a month) and my over all feeling like crud has my team feeling there is enough concern to warrant the scan. 

I’ve been thinking all morning. I’m working in a visit to Sloan Kettering on August 5th to see my Primary Oncologist while Adam and I tour NYU. I’m going to see if the PET can be done earlier that same morning before my Dr appointment. I haven’t been scanned there in a while and due to the mixed reading I recently had that involved the lymph nodes, I feel it would be best if Sloan could do it. Hopefully, all the stars align and it works out. *fingers crossed*

On a lighter note….I recently returned from a quick advocacy trip to NYC. 

Compassion & Choices asked if I would share my story and why I support Medical Aid In Dying with WABC7’s Ken Rosato for his Weekend Show – Viewpoint. Of course I said yes! It’s important to keep this important topic at the forefront and keep the conversations going. It’s the only way to gain traction and enlighten people about why terminally ill people, like myself, want this legislation. 

The interview took place at the WABC7 studio in Manhattan. The same studio that Kelly Ripa and Rachel Ray call home! In fact, Kelly Ripa was live on the air when we arrived.

Corinne Carey, the Director of the NY Chapter of Compassion & Choices and I sat with Ken Rosato for 10 minutes. Corinne spoke about the facts and statistics of the other states that already have these laws in effect. I shared a shorter version of my story and why I’m in support. I also stressed to Ken that I am in NO way suicidal nor do I WANT to die. I want to live. God, do I want to live. That’s so important for me to have people that don’t know me understand. I so hope I made that clear. I think I did.

The segment, I’ve been told will air on July 27th and again in October. I’ll be sure to post links on my Facebook Blog Page and Twitter.

At least I didn’t look as awful as I felt on the day of the interview. 😉

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/

Advocacy in Albany

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I’ve been working with Compassion & Choices since February of this year when lawmakers became serious about Aid-in-Dying legislation. I feel strongly that all states should have laws similar to those in Oregon and the other  States with Aid-in-Dying laws for those of us with a terminal diagnosis that want another option.

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The goal was this past Tuesday, May 10th, Lobby Day in Albany at the State Capital. Very careful planning was going into this day. The main part of the day would be teams of people meeting with lawmakers or their representatives to talk about the Bill, share personal stories about why it was important for this legislation and to leave information so that ultimately we could have others support and co-sponsor the Bill to get it passed into law.

I was asked to take an active roll in both the lobby meetings and with the press. I happily accepted in the hopes that what I have to say would make a difference and perhaps open minds to see that this is an individual choice. I realize I won’t change personal convictions and that’s OK but those convictions shouldn’t object to someone else’s ability to choose something for themselves.

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My day began with a radio interview by Capitol Pressroom. I’m interviewed along with Gene Hughes, a disability rights activist, who also supports Aid-in-Dying.  Our interview is to the 13:00 mark.

http://www.wcny.org/may-10-2016-susan-rahn-john-sheehan-jill-furillo-jonathan-e-gradess/#canvas-sidebar

Immediately after the Press Conference began in the Senate Chamber Lobby. In attendance was Senator Diane Savino, Assembly Woman Amy Paulin, Senator Brad Hoylman, many members of the press and our opponents.

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It was so impressive to hear Paulin and Savino speak. They unveiled their new combined Bill – A10059 NY Medical Aid In Dying Act.

I shared my story and why this was important to me. It was basically a shortened version of the speech I gave in Buffalo. It was extremely intimidating. There were reporters with cameras a few feet from me. Bright spotlights. I’m definitely not a public speaker. My voice was so shaky, but I think I did OK for being a total amateur.

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Senator Brad Hoylman spoke next followed by Gene Hughes, Assembly Member and Assembly Health Committee Chair, Dick Gottfried Bill Co-sponsor and Rev. Dr. Bill Levering.

I spoke with two reporters after the Press Conference who had more questions for me and then it was time to start the “Lobby” part of the day.

I was part of different teams of 2 or 3 other people. My job was to share my story and hopefully by the end of the meeting the representative for the Assembly Member or Senator we were meeting with would be willing to put the packet of information we would be leaving in front of him/her and have them read it.

In between meetings, I had the amazing opportunity to be interviewed by Amy Paulin for what I think was a Closed Circuit TV program that she does right there in the Legislative Building. She’s a genuinely nice person. Her sister suffered terribly during her decline with Ovarian Cancer. She lived in Georgia where Aid-in-Dying is not available and she stopped eating and drinking to speed up the dying process. It’s because of her Sister’s experience and suffering that she is so passionate about this Bill.

There were a few more meetings before one last interview. I was looking forward to meeting with Senator Robach. Not only am I his constituent but both he and I have attended events at the Catholic Grammer School my Son attended. This meeting was personal for me. Unfortunately, he was on a call with the Mayor of Rochester and not able to meet with me. I was able to meet with one of his staff and shared my story with him and my connection with the Senator. I urged him to convey why this was so important to me and he assured me he would. I believe him. With tears in his eyes, he hugged me.

My day wrapped up at YNN with Corinne Carey, Director of Compassion & Choices New York, Gene Hughes and my Public Speaking Mentor, Greg Menkee. We met with Liz Benjamin who hosts a political show called Capitol Tonight. Via Satellite was Senator Diane Savino.

As I got into my car and headed on the long road home, I reflected back on the day and all the people I met. I was really overwhelmed at how many people stopped me throughout the day to thank me for speaking, for being brave, for being a voice for those who can’t. I don’t think I’ve ever been hugged more in one day than I had in Albany. Reporters hugged me, Lawmakers hugged me, other advocates hugged me.

It validated that my belief, my stance on this topic and this Bill, my desire to advocate to make this a law in NY is absolutely worth it. It’s worth it because it’s also important to so many other people. It’s worth it because if my voice can help even a little, even a tiny bit, it will be a lasting legacy that my Son can be proud of.

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Until We Meet Again

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Social Media tends to bond people with similarities. Similar interests, hobbies, music and even illnesses.

Cancer is one of one of those illnesses that bonds people rather quickly. Especially terminal Cancer. We are a group of people that bond over treatments, side effects, helpful hints, advice, support groups and stories of when diagnosis happened.

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Deb Mumma is one of those extraordinary women I was lucky to have met thru Social Media because of our common diagnosis. Right down to the same pathology. We became fast friends and talked quite frequently thanks to our mutual friend – insomnia. There were many 3am conversations when Deb was recuperating from back surgery. If you’ve ever spent time in the hospital you know how difficult it can be to sleep for any length of time.

Deb loved her family. She spoke of her parents and how after as many decades they had been married they were still just as close as in younger days. Her husband, Ron passed after a long illness. It was very clear how much Deb missed him. The way she spoke of their marriage made me a little jealous.

The pride and joy, that always brought a smile into Deb’s voice were her Children and Grandchildren – 12 little ones in all! And of course her pups, Sully and Kiki.

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At Christmas we talked about our kids. Deb worked furiously on two identical doll houses for her Granddaughters. And then there was the trip to Disney World in March. Deb was so excited to tell her Grand kids and witness the expected ‘freak out’.  It was very important to her to make lasting memories as her health began to decline. Although she would never admit it or want to talk about it.

The first weekend in April, Deb helped me with a speech I gave in Buffalo (See previous post dated April 7). She knew how nervous I was and offered to read it and give me the honest criticism I needed. Then on Saturday night we Skyped so she could be my audience and I could practice giving my speech to her. Deb was selfless like that. Even though she had been feeling sicker from chemo and her liver failing she still made time to video chat.

Many of us with Metastatic Breast Cancer are active in some way with advocacy. Deb was no different. Her advocacy was on a local level. It was important for her to raise money for those receiving care at Cumberland Valley Breast Care in PA. Deb even designed a beautiful necklace with the help of a jewelry designer with part of the proceeds going to CVBC and to Breast Cancer Research. “Ribbon of Hope & Tears”. This is one ribbon I can endorse. It doesn’t have to have a pink gem. There are 10 gem options and 3 metal options for the ribbon.

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In the time I’ve gotten to know Deb, we had meaningful conversations and we were there for one another whenever we needed each other without question and regardless of the time of day or night. Deb knew I never muted my phone and that I am a very lite sleeper so the ‘ding’ of my messenger would never go unanswered if she needed to talk. I’m going to miss that. A lot.

“A dragonfly to remind me even though we are apart, Your spirit is always with me forever in my heart”…..Until we meet again Deb. I love you.

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