advocacy

The End Of The Year Took A Sharp Left Turn

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Missing In Action

To put it bluntly, the last half of last year was a nightmare. We have been without an elevator in our building since December 2021. It wasn’t so bad until the building we are attached to also had its elevator become out of service. Living on the fourth floor, means there are six flights of stairs to climb every time I leave my home. While exercise is good – especially for me since I hate doing it- climbing all those stairs over an extended period makes my body revolt in several unfun ways. When you’re in your fifties living with cancer, it definitely doesn’t help.

At the end of summer, I was in a world of pain. My back, hip, and leg hurt terribly, and my whole lower leg was numb. We were pretty sure it wasn’t a cancer issue, but it couldn’t be ruled out, so I was sent for a few MRIs. I had two pinched nerves. One at the bottom of my lumbar spine and the other at the top of my sacral joint. There are also herniated & bulging disc’s all down my spine. I was sent to a doctor that specializes in pain.

He recommended I undergo an epidural nerve block to help with the pain. At that time, I would have agreed to put bamboo under my toenails if it would help. I have gotten some relief though I still have numbness in my lower leg, which may be permanent. Time will tell how long that block will work. Would I repeat the procedure if I needed to? ABSOLUTELY NOT. That procedure was the worse thirty minutes of my life. God bless those who do that regularly because I will never do that again. If you’ve been following me for a while, this was worse than my acupuncture experience.

I was looking forward to the holidays. It would be My Beauty’s first Thanksgiving and Christmas. I know she won’t have memories of this holiday, but I sure will. She liked all the food – Turkey, Green Beans, Stuffing & Mashed Potatoes.

1st Thanksgiving
1st Thanksgiving

We Make Plans & The Universe Laughs

I traveled to Florida the Friday after Thanksgiving to see Oldest and his family. Oldest recently had a baby boy with his girlfriend. He is two months younger than My Beauty. I hadn’t been in Florida for 4 hours when I found out my Dad had a bad fall. Dad fractured the top of his femur near his hip. This wasn’t good. Dad already has two artificial hips. He didn’t just fracture it in one place; he had a fracture on either side of his femur. I would realize later that my life, in that moment suddenly and significantly changed. Since I wasn’t in NY, my Mom was alone until I got back. In my absence, my son helped out as much as he could. I wasn’t sure if Dad would have surgery or how long he would be laid up. Regardless, I knew I would be tied up with my folks for a while. Surgery had been declined. The doctors felt trying to heal it on its own would be better in the long run.

I stayed with my Mom for 28 days until Dad was back home. I can’t even put into words how stressful that time was.

Everyone Needs An Advocate

Growing up, we believe our parents were superheroes that could do anything. As we grow up and become adults, reality slaps us back to earth and the realization that one day we will have to be responsible for our parents hits us like a ton of bricks. Those bricks came down on me hard in the form of panic attacks.

After a week in the hospital, he would be transitioned to a physical rehabilitation center. It seemed simple enough; until we were told we had to choose where he would go. We were given four double-sided pages of options. However, not all of them take the same Insurance plans. Of course, the one place we wanted him to go to didn’t accept the Insurance he had. It became evident that I would have to take the wheel and do what I had to so he wouldn’t end up in a nursing home situation. The only option I had was to switch my father’s health insurance plan to get him into our preferred rehab center.

Insurance Is Complicated

I contacted the ONLY person I knew could help with this – Hector DeSessis. Hector has a long-standing relationship with my folks concerning health insurance. He also helped me choose a Gap plan that would be right for me. Hector found a plan that not only would the rehab center accept but was a better value overall and offered more benefits. The best part was that this new policy would be effective on December 1st, the day he was going to be moved to rehab. This all happened on November 28th. When I say Hector was a miracle worker, He is brilliant.

Thankfully, it all worked out. Dad spent 20 days in rehab getting the care and physical & occupational therapy he needed in order to come home. Every day, twice a day, Mom and I spent time with Dad. We ensured he had fresh water, helped him shave, and made sure he had whatever he needed. Even if we didn’t spend the whole time talking, he knew we were there with him and not alone. Finally, on December 23rd, Dad could finally get discharged. It would continue to be a relatively long recovery process while his leg continued to heal. But all that mattered was that he was home for Christmas.

A Magical (unconventional) First Christmas

2022 wasn’t a typical Christmas. There were no homemade cookies or a Christmas Tree. But that’s not what Christmas is supposed to be about. I put up some Christmas decorations to make the house feel more festive. I put up decorations that would be easy to add around the house and take down. I wanted Dad to come home to a festive environment, not to mention this would be My Beauty’s first Christmas!! Everyone was excited to see her and watch her open presents! This child is always happy and has the biggest grin ever. It melts my heart every time.

My Beauty on her 1st Christmas
My Beauty’s 1st Christmas 2022 with Mommy

It’s astonishing to me that her first birthday is aroud the corner! She’s walking (more like running) and ‘talking’ to everyone, including her stuffed animals. I get the most joy seeing her happy smiling face and spending time with her.

Back To Reality

Aside from the issues with my back, I’ve recently been having issues with my blood pressure. Apparently, 150/110 is frowned upon. All the tests I’ve had in the last year indicate all is well with the mechanics of my ticker. The next step is seeing my pulmonologist. I will have a V/Q Test scheduled. My regular scans will be in March, and I have a separate MRI later in March at Sloan Kettering to check on a cancerous lesion in my kidney.

I sincerely hope everyone had a joyous holiday and stayed as healthy as possible.

Look out for newsletter updates soon…..

Bless My Black Heart

Did I mention that My Beauty has an affinity for The Grinch?? She’s a girl after my cold black heart!

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

Patients at Pluta Have a Guardian Angel

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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?

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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….

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​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.