death

The Couch That Love Built

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If you’re a regular reader here, you know I’ve talked about The Cancer Couch, and it’s founder, Rebecca Timlin-Scalara. In case a refresher is needed, Rebecca started a nonprofit as she was recovering from treatments she was receiving for breast cancer. The irony in her choosing the name of her foundation comes from the fact that she, a neuropsychologist, literally went from one side of the couch to the other.

Rebecca initially was told she had Stage 4, metastatic breast cancer, but after having additional scans, it was determined she was Stage 3C. When her doctor told her she had a chance at a cure (being 3C), she decided then and there she had to do something about the fact that MBC is woefully underfunded. She wasn’t going to leave those of us dying behind.

Rebecca and I met and began working together in the summer of 2016. We had a “small world” family connection that Italian families are known for. It wouldn’t surprise me if our “ancestries DNA” held similar leaves on some of the same branches of our family trees too but I digress.

Rebecca could hustle. She formed relationships with just about everyone she met and if there was a way to partner up to raise money for her foundation, which meant MBC research – she made it happen. Fun Fact: There are only two organizations that are focused 100% on MBC research; however, every single donation gets matched, which makes volunteer-run TCCF unique. That’s right – MATCHED – Dollar for Dollar.

Cancer is a sonofabitch. It doesn’t care who you are; it doesn’t discriminate. A sobering statistic I have mentioned here before is that up to 30% of those successfully treated for breast cancer will recur with metastatic disease. It may not happen immediately; it could be up to 15-20 yrs later. When Rebecca found out hers had spread, it didn’t slow her down. As I write this TCCF has funded over 3 Million Dollars for MBC Research.

This incredible woman, this champion for metastatic breast cancer patients, my friend, died on Saturday, December 14th. Please keep Rebecca’s family and friends; especially her husband and children during this unimaginable time.

Below is Rebecca’s obituary, as written by her husband, Tom. As much as I hate that it had to be written, it’s the most magnificent tribute that encompasses the essence of who she was.

Dr. Rebecca M. Timlin Scalera
August 20, 1972 – December 14, 2019

The Radiant:

A Radiant Mother, Wife, Daughter, Sister, Aunt, Friend, Neuropsychologist, Breast Cancer Activist, Division 1 Athlete, Coach, Captain, Comedienne, Traveler and Writer. A True Force of Nature and A Whole-Hearted Lover of Everybody and Everything in this Life.

The Angels:

A beautiful blue-eyed angel was made on December 14, 2019. Dr. Rebecca (Reb) Timlin Scalera was the wife of the incredibly lucky (she wanted me to write that), Tom Scalera, and the loving mother of her amazing children on this earth, Bella and Luca, that are a daily reflection of their Mom’s radiant energy, beauty, and intense love for them. We are all comforted to know that she will now be with our heavenly son, Angel.

The Magical Days:

Reb was born August 20, 1972 and grew up in Windsor Connecticut. But there was even more family magic on that date…33 Years later she birthed her beautiful cosmic twin, Bella, on the very same day and (wait for it)…the same minute. It is a day of miracles in our family and it shows how uniquely and freakishly strong Reb’s connections have always been and will always be to her children. She also continues to have a life-long connection to her special childhood friends from Windsor that have been faithful traveling companions through every stage of life with her.

The Smarty Pants:

Reb was insanely intelligent, that rare combination of IQ and EQ – yes she had it all and she had the lighting-quick processing speed to use it. So not only did Miss Smarty pants get a B.A. in Psychology from Fairfield University, she went on to Fordham University to get her Ph.D. in Counseling Psychology and then added on a Professional Diploma in School Psychology from Fordham University for good measure. She made neuropsychology her career choice and ultimately became a partner at Neuropsychology Consultants in Norwalk, CT because her spirit could not bear to see anyone in pain (store that one for later). Reb was born inside out, her soul was on the outside, you could immediately feel it when you were in her presence. A brutal 4 year war with Breast Cancer ravaged her body, but her Mind and Soul just grew stronger and more magnificent every day. She lived a daily life of passionate enjoyment – to Reb everything was amazing. And while she did not have very much time on this earth in this form, she enjoyed it twice as long and twice as hard as anyone I know.

The FU:

Going back to our beginning, it was at a Fairfield University beach party (just 10 houses away from the dream home we just built), that we first met and fell in love. She said she was hit by a lightning bolt and immediately knew we were soul-mates (remember soul on the outside). Some of her other amazing memories and accomplishments from the Fairfield University days included being named All Scholar Athlete on the Women’s Division 1 Soccer Team, experiencing a life changing semester abroad in Spain, engaging in a decent amount of partying and forging life-long friendships and connections within the amazing Fairfield University Community.

The Couch:

So after a dream vacation in August 2015, Reb was diagnosed with Breast Cancer and the long battle officially started. She, like so many others, thought that all breast cancer is curable, but she quickly learned that it is not. It is not! So she directed her energy, passion and intellect to increase funding for cutting edge research for Metastatic Breast Cancer – the one that ultimately takes 42,000 lives a year in the US alone. So the former psychologist started the 100% volunteer managed Cancer Couch Foundation from her own recovery couch. In just 4 short years, the Cancer Couch has funded over $3 million in research at Dana Farber and Memorial Sloan Kettering. She proudly represented the Foundation on ESPN, the NBC Today Show and countless other news and radio broadcasts. The Foundation also hosted 4 of the best party fundraisers in Fairfield County – Reb made sure that everyone had a crazy blast while combating this deadly disease – that’s how she rolled. While there is much more work still to be done, we are so very thankful to the thousands of supporters of the Couch’s mission all around the world.

The Reb:

Rebecca constantly amazed the many, many people who loved her with her boundless energy, optimism, smarts, and thoughtfulness. She made devoted friends in every stage of life, and kept them, always one to reach out and bring people together with great warmth, humor and enthusiasm. She had many interests and talents that she pursued passionately, often inspiring those around her to pursue them as well. Among her many loves were the sea (she was the Lady S Captain, not me), the beach, traveling, writing, blogging, raising millions, live music, reading, tons of movie popcorn, watching shows and snuggling. She was notoriously the last one to the party and the last one to leave – she never wanted to fun to stop. As exciting and accomplished as she was, there was no one better in the world to do absolutely nothing with.

The Family:

Reb is survived by the incredible Tom and Rosalie Timlin, her three indomitable siblings: Vivian Ciampi, Sean Timlin, Paula Cunningham; her 4 super-cool siblings-in-law: Marc Ciampi, Jim Cunningham and Nicholas Vasquez Scalera and Carolyn Vasquez Scalera. She will remain a constant presence in the lives of her 8 adorable nieces and nephews: Zachary, Carina and Colby Ciampi; James, Makayla, Thomas and Kendall Cunningham; Briana Timlin and Amelie Scalera. The Family would like to thank the countless, nurses, doctors and support staff that lovingly cared for her and often received a personalized rap song as a gift of her appreciation (yes that really happened often). And we’d like to extend a very special thank you to Dr. Andy Seidman, Reb’s Rock-star oncologist and trusted friend and her dream team of researchers at Sloan led by Dr. Sarat Chandarlapaty and at Dana by Dr. Nikhil Wagle. The Family would also like to thank the extensive and highly capable network of family and friends for the countless acts of kindness and love shown to us all in so many ways.

Those wishing to make a donation in her memory to her foundation can click HERE.

Rebecca established an Angel Fund at The Pluta Cancer Center in Rochester, NY (where I go locally) for metastatic breast cancer patients in financial need. Those who would like to make a donation in Rebecca’s memory to that fund can click the link above and scroll to the bottom of the page until you see my photo.

Writers Block is Real

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Nine months. I have been relatively silent for the past nine months. Even now, as I begin, the words are difficult to find. So for record-keeping purposes today is Tuesday, November 26, 2019. It’s 2:16 PM.

The Circle of Life is a Never-Ending Tail-Spin

Death is a part of life, and over the last 6 yrs, I have experienced more of my fair share; a lot more. That part of my emotions should be numb like a hardened callous by now from being overworked. It would be SO much easier, but what is it they say? If it were easy, everyone would do it. I chose to get involved in advocacy, and in doing so, I’ve had the honor of meeting some fantastic people. Some were a significant part of my life, albeit a short time. I wouldn’t change that, but dammit, ENOUGH ALREADY!

My circle has gotten smaller. Partly for self-preservation, the other part from death. A small circle means the losses are much more challenging to overcome; to get one’s head back into the game. All I want to do is save my friends when they start to slip into the metastatic quicksand that’s trying to swallow them as their treatments stop working. It makes me furious that I can’t and feeling defeated that after everything I’ve been attempting to accomplish, participated in, I don’t see the needle moving. Not as fast as it should, as it needs to.

In Memory of Social Graces

Social media has become a dreadful place that I now avoid. When there aren’t posts of shitty news regarding someone’s health, others are doling out bad medical advice, or there will be hundreds of comments under posts for the intention of instigating a verbal beat down. The worst are self-righteous soapbox posts scolding everyone or instructing us how to act. HARDFUCKINGPASS.

This advocacy world I live in isn’t the same anymore. (Please take note: I specifically avoided the term “cancerland” because people don’t use it to reference the work that Champagne busted her ass for; it’s cheapened to sounds like a fucking amusement park). It used to be a place where we could all count on each other. When we had to rally the troops (virtually) – they came. No question. People just showed up. We had chat groups where we shared information and strategized. It’s different now; It makes me sad. The goal hasn’t changed. Our mission is the same. The atmosphere is more of a “too many cooks in the kitchen.” We all may not have always agreed, but there was a basic level of understanding. Now you can expect to be treated as an exiled pariah or begrudgingly called out in public. Issues don’t get handled by two people at that moment who disagree but are drawn out into lengthy grudges that people feel they have to gain strength in numbers like a schoolyard confrontation. It just leads to more animosity, divisiveness, and people getting canceled because they don’t fall in line with what one person’s idea of what this “community” should be.

There is no privacy or loyalty to those that are outside of individual social cliques (which often congregate in small private groups or chats) even to the point where advocates have been through character assassination publicly. Things they have asked to stay private have been spread outside of private groups (where people assume a false sense of safety and privacy) to enhance gossip and drama. And for what?

We used to have movie nights where, at a set time, we would watch a movie; we’d start it at the same time and hang. People who couldn’t get out of bed were still part of us, and it helped us remember why we were doing this, not for self-glory or fame, but to save the lives of people who became a community from our shared experience. Unfortunately, we aren’t a community anymore; we’re becoming only individuals. There are groups of friends and advocates, but they function much more like high school cliques with their relative queen bees who decide where they are focusing and can swiftly scold or cancel anyone who falls out of line. The vibe is no longer grown adults working together for a common goal, and it’s hurting all of us in the long run.

You Can’t Do It All – Stop Trying

When you find out your time has been significantly cut short, the desire to make an impact on the world becomes more important. You want to leave a legacy behind your family can be proud of. One problem with that is it’s impossible to do everything. I know, I tried. At one point, I had to step away from METUP, of which I am currently active again because trying to be everything to everyone in all of my advocacy roles became wearing. More importantly, be proud of what you hitch your wagon to or rather your name. If you’re keeping the things you’re doing off of your social media (and those things aren’t tied to a confidentiality agreement), maybe reconsider your choices. Otherwise, own your shit.

Advocacy isn’t about elevating yourself to be the lofty and look down at people who may not be doing things your way. Or filling your Facebook Friends List to the brim with people you’ve never met; it’s about representation and speaking up for yourself and using platforms whenever they are given to you to further your cause – not yourself. Advocacy isn’t about celebrity; it’s about philanthropy and making sure our collective voices are being heard.

While I’m sad and disheartened right now, I am thankful for the connections I have made; the people I know who are honestly great advocates. I don’t know if we will ever get back to where we were or if it’s even possible. I do know one thing, we would be a much bigger force if we could.

It’s now Wednesday, November 27, 2019, 12:13, PM.

Happy Thanksgiving

What the Fuck Is the Reason?

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I am so sick of hearing people say to me that I’m still here for “a reason” or I’ve outlived my prognosis for “a reason.” If there is in fact “a reason,” then please tell me, what the fuck it is.

This week has been especially difficult. A close friend of mine who I see on a regular basis and talk to daily, took a turn she unfortunately wouldn’t recover from. Her Mom called me this past Monday to let me know Melissa was going into hospice. I don’t care how prepared you think you are; you are never prepared to hear those words about someone you love. As I hung up the phone, it felt like someone pulled the world out from under me. I don’t remember a time when I ever sobbed like I did on Monday. I wasn’t crying for me. I was crying for Stella; Melissa’s 6 yr old pint-sized-version-of-herself, daughter. What kind of sick joke was the universe playing?

Melissa & Stella

I went to see Melissa Tuesday evening. In true Melissa fashion, her room was packed with family and friends. To know her, that was it, you had no other choice BUT to love her. Her no nonsense, tell it like it is attitude combined with a je ne sais quois and dimples gave her an unmatched power that would evoke a response of “Thank you, Hope to see you again.” after telling someone to fuck off.

My visit turned into an all nighter. I stayed with her Aunt’s Marie and Kathy. Of the three of us, Marie slept. Kathy and I talked all night and kept an eye on Melissa. Even the night nurse Vicky spent a good chunk of the night chatting with us.

Tuesday was the last time I would hear Melissa speak any words. By Wednesday night she stopped taking any liquids.

I returned to the hospital Thursday night. I was certain that the next time I walked out of the hospital to go home, Melissa would be leaving as well. Headed where she would be reunited with loved ones from her past and friends who had arrived ahead of her who were waiting patiently for her. Kathy and I again talked all night long while Maria slept on and off. By morning, the general consensus was she was waiting to see Stella one more time. No one could ever tell Melissa what to do and she wasn’t about to let anyone pull that crap now.

While all of this was going on, I was going through periods of anger rage. White hot rage. Serious question: Why Melissa? Why not me? Before anyone freaks out, I’m thinking this because I reached my “please God just let me live long enough to see..” goal. IF something were to happen to me, I know my son would be OK. Melissa, on the other hand, is 36 yrs old. She has milestones to reach with her daughter: Kindergarten graduation, first lost tooth, first sleep over, first crush, first boyfriend…Stella needs her Mom for this – all of this. There is no good damn reason to explain this unfair bullshit.

Then I encounter stupid people on social media (by proxy) and I may have had a rage tantrum. I read in a Facebook post that someone said they felt having cancer was a gift and that comment was offensive to the person who’s now talking about what she read. What-the-what? A cancer patient, who is actively living with cancer NOW feels it’s all a GIFT?? Now I have to give my two cents, which is more like a dollar fifty in pennies.

I said my last goodbye to my all-hours-of-the day-or-night-chat-buddy, my Indian food loving, CheesecakeCake binge eating, classic moving addicted, fabulous friend at 9:48am, March 1st, 2019.

Yesterday was a blur. I slept. A lot. I forget that I can’t keep up the pace that I think I can. My body gets exhausted and I shut down. Two all nighters in 3 days was cake in my 20’s but 20+ yrs and a cancer diagnosis later – forget it.

My phone rang at 10:49pm Sunday, March 3rd. It was Melissa’s mom. I knew before I answered. For a split second I wondered if I ignored the call, could I change the outcome? I answered and heard the words I didn’t want to hear: Melissa had passed.

Part of me feels very selfish being upset. My sadness is a little about me; but mostly for Stella. As sad as it is, Melissa is no longer in pain, she’s not struggling to make it through the day while being so exhausted all she wanted to do was sleep. She’ll never be nauseous or sick at the drop of a hat. Melissa will never have to endure another scan, treatment, or side effect.

I’m still pretty fucking angry. Death didn’t have to be what gave her that freedom. We should have better treatments. We should have medications that keep us going without the worry of impending death. There’s no good reason for children like Stella to be growing up without their parents.

So, I guess I’m just going to have to use whatever extra time I’m being given and take it up with those that failed Melissa and Stella.

Maybe, just maybe, I figured out what that “reason” is after all.

Melissa DePalmo ~ March 26, 1982 – March 3, 2019

Wild Hearts Can’t Be Broken; They Just Get a Little Cracked

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The last 5 years I have been living my life straddling a fence. I fight every day to stay balanced. Steady. On top and moving forward trying to live my life while also making some kind of difference.

There are days when I don’t feel well or I have side effects from treatments. I struggle to keep my balance. Then there are days when news of a another life stolen from this insidious disease makes it way through friends and social media like a sick game of telephone. Its all I can do not to fall flat on my ass onto the ground.

Last year, singer/songwriter P!nk released a song: “Wild Hearts Can’t Be Broken”. I’m sure she had her own reasons for writing this song. Clearly, it’s not because she knows me or understands what a day in the life of any Metastatic Breast Cancer advocate is like, however, that is exactly what this song is to me.

“I will have to die for this I fear

There’s rage and terror and there’s sickness here

I fight because I have to”

The American Cancer Society estimates that in 2018, 41,400 men & women will die from MBC. That number hasn’t decreased in over 30 years. But that’s not widely talked about.

The only way to see that number move in the other direction is to actively fund meaningful research that will focus on Metastatic disease and drugs that offer longer progression free survival.

“There’s not enough rope to tie me down

There’s not enough tape to shut this mouth

The stones you throw can make me bleed

But I won’t stop until we’re free

Wild hearts can’t be broken

No, wild hearts can’t be broken”

Over the past 5 years, I have held several fundraisers benefitting the only two organizations that exclusively fund metastaic breast cancer research. I have traveled to Washington D.C. three times to help organize and participate in public demonstrations to raise awareness. I’ve spoken to lawmakers and I am vocal on a daily basis on social media. If it’s going to make any kind of impact, I’ll do it. If it could potentially save just ONE life – ONE. I’m there.

You bet there isn’t enough rope, chains or straps to tie me down. You’ll never find any tape or glue to shut my mouth. (Ask my family – they’ll vouch for the mouth).

Sure, there will be people that may say “why bother, it’s too late” or “Go out and enjoy the time you have left; stop focusing on ‘cancer'” To those people my message is simple: I’m not just doing this for me. I’m doing this because I need to make sure my future grandchildren won’t ever have to worry about this.

Wild hearts can’t be broken, but every time another friend dies, tiny cacks appear. Those cracks are there to remind me and the rest of us that tirelessly advocate that it’s essential and to keep plugging along.

This song is my battle cry. It’s what motivates me when my headspace says I can’t. It’s what I listen to after learning of another death.

I owe P!nk a debt of gratitude for writing what feels like an anthem for all those living with and madvocating for a terminal diagnosis.

Should anyone happen to run into her, please pass that message on to her.

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!

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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