Nevertheless We Persist – Lobby Day 2017

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

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 or you can listen to the entire interview 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

Patients at Pluta Have a Guardian Angel

It’s very expensive to have cancer. There are scans, monthly labs, Doctor appointments, drugs to fight the cancer and more drugs to help with side effects. It can be very overwhelming and if you’re like most people, it can be financially devastating.

There are some organizations, such as The Pink Fund, that are available to early stage breast cancer patients that offer financial help with non-medical related bills (rent, utilities, etc.). There are very few organizations that offer immediate financial help to Metastatic Breast Cancer patients.

This is often a big problem to women that need child care in order to go to appointments or having to choose between groceries, rent or chemo. I mean, seriously, the basic living necessities will always win, am I right?

Enter Rebecca Timlin-Scalera, founder of The Cancer Couch. In addition to raising money for the treatment of Metastatic Breast Cancer, Rebecca has begun establishing “Angel Funds” in the communities of some of the women that have been fierce advocates and educators of Metastatic Breast Cancer and who have also supported The Cancer Couch Foundation.

A portion of the funds raised from fundraising events in their respective communities will go to the local Metastatic fund.

The local fund is administered by the honoree’s local Cancer Center or Hospital. Metastatic men and women can inquire about receiving immediate help to cover rent, groceries, a utility bill, child care or transportation to a doctor appointment. The money does not need to be paid back. Everyone needs help from time to time. It’s OK to ask for help and with this fund now Metastatic Breast Cancer patients can get financial assistance.

I am very proud and humbled to announce that there is now The Susan Rahn Fund for Metastatic Breast Cancer Patients at The Pluta Cancer Center in Rochester, NY.

On October 28th, Rebecca and I met with Jamie Bishop, Executive Director and Judy Zeeman-Golden, Oncology Social Worker of The Pluta Cancer Center. Pluta, is where I receive my monthly treatment. Rebecca presented Jamie and Judy with a check for $2,000 to establish the this new fund.

Every fundraising event that is held in Rochester for The Cancer Couch Foundation, 10% will go directly into the Susan Rahn Fund at Pluta. Additionally, donations may be made directly to that fund via The Cancer Couch website using this link. Just scroll down until you see my name and picture and click the donation button.

The Susan Rahn Fund

As the holiday season approaches, I ask that you consider making a donation to this fund (if you live in the Rochester or surrounding area), or any of the funds listed on The Cancer Couch site, so that those seeking treatment for Metastatic Breast Cancer can have one less thing to worry. What better way to give thanks for your good health and spread some holiday cheer in the process?

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.

Before You Post That Meme….

​We’ve barely had time to dip our collective toe into September and the just like the Christmas decorations we see way ahead of schedule, it seems the Pink ooze that is October has already begun.

To be perfectly honest, I feel like asking for my high blood pressure meds back (that I finally got off of) until November arrives.

Breast cancer is the ONLY disease that is sexualized and trivialize. It’s the ONLY illness that is treated like a sorority, where you’re literally welcomed in by others. Do men go around wearing a jock on the outside of their clothes in the name of ‘awareness’ for testicular cancer? Do they wear a strap on to to bring awareness to the CAUSE of penile cancer? Nope…because it’s ridiculous. 

So, why sexualize cancer of the breast? What’s the point of a cryptic Facebook post, really? How is a selfie going to help anyone in actual need? What is going without a bra truly going to do for anyone? And who is going to know you’re doing it unless you either go topless or wear a thin white t-shirt to show your bare breasts – which again is only sexualizing a deadly disease….a disease that kills 113 women in the U.S. every day. A disease that I will die from because we still don’t have a cure for.

Some of these ‘fun and games’ in the name of awareness even hijack the one and only day dedicated to the Breast Cancer that kills – Metastatic Breast Cancer Awareness Day  (October 13th). You’d think that out of 31 days MBC would get more than one day of recognition. After all 40,450 Men and Women will die in 2016 because of Metastatic Breast Cancer. Don’t they deserve more than one day?

I’ve been accused of being angry and insensitive because isn’t any awareness good for the cause? I make no apologies for my strong opinions about my emphatic objections to the way Breast Cancer has been reduced to a cute, sexy marketing campaign and not the serious and potentially deadly disease that kills so many YOUNG women as well as men every day/every year. 

If raising awareness is important to you personally, it would seem to me that actually doing something that would have a direct impact on folks with Breast Cancer or helping to educate those that could benefit from it would be the better option than just choosing to do something that you could do any other day of the week.

The day I stop being angry and pissed off about how the public views and treats Breast Cancer will be the day the landscape changes or more realistically, the day I die from MetastaticBreast Cancer.

Viewpoint with Ken Rosato

 

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

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. 😉