And God Laughs

I should be sleeping. It’s 2:33am. I have to be up in four hours.

I am in Albany as part of a campaign for New York’s Medical Aid in Dying Act. The campaign, 50 Reasons by Compassion & Choices, highlights 50 stories of real people and their reasons why they support the bill. Its genius. The people included aren’t just terminally ill patients; they are members of the clergy, doctors, caregivers, loved ones. They all have personal stories; reasons that provide their perspective.

Today is my day to share my reason.

Normally, I can do this with my eyes closed. I’ve been coming to Albany and have been involved in this advocacy for years. I’ve blogged about it in the past. My reasons then were very clear. I didn’t want my son to see me actively dying, lying in bed for who knows how long and remember me that way. I was working hard to create special memories for him. I wasn’t going to have the end of my life strip that all away. While that’s still true, he’s much older now. There is another reason that has moved to the top of my list.

(This is the most unnerving coincidence – I know God is laughing)

Exactly one year ago, I published a blog What The Fuck Is The Reason. My dear friend Melissa died the night before from metastatic breast cancer. I had sat with her family, her best friend Chrysta, and watched countless others come and go as they checked on her or said their goodbye’s. There were a few nights I stayed with her Aunt and close family friends so Melissa wasn’t alone.

Facebook Memories Suck

Melissa lingered for nine days. There were times she was in pain but unable to communicate beyond calling out. She was visibly restless, and fluid was building up in her lungs. It was incredibly frustrating for those of us sitting there bearing witness. We were mad. We were upset. We felt helpless. I can’t fathom how Melissa felt being trapped in a body shutting down and not being able to communicate what she needed.

Death is not how it is in the movies or on TV. It’s not a natural, peaceful, falling asleep death. If you’ve never sat bedside for anyone while they died and thought that’s what it was like – you’re greatly mistaken. Cancer patients who have been on pain medications for a long time have it the worst. There is a level of tolerance that develops. A false understanding exists that with the right ”formula” of morphine, any pain can be managed. That may be true for some, but not everyone. The line between palliative coma and death is razor-thin.

Those days and nights I spent in Melissa’s hospital room gutted me; not to mention how it impacted her family, those that loved her and her sweet daughter. I don’t ever want to be trapped in my body like that. To put my loved ones through that. Those nights reinforced to me how important it is that there be Medical Aid in Dying laws in every State. Everyone with a terminal illness should have access to this option if they want it.

It’s not a religious issue – It’s a personal choice.

It’s not suicide (OMG It’s NOT) – I want to live. Cancer has other plans.

I think I always knew about the correlation in dates between yesterday/today and last year. I just never let my mind REALLY go there until it forced me. Always the middle of the night. Thanks, brain. While it will be familiar, it will also be different as I see staffers and lawmakers. The tears I know will come will be about Melissa.

I’m livin’ the dream, Melissa.

Livin it for you babe.

Two hours until I have to be up…..

Six Month Increments

It’s been six years, six months, and 24 days.

I’ve been living my life in six-month increments.

I go about my life like everything is normal, like nothing is wrong.

Don’t let them see. Smile. Laugh. Don’t let them hear any worries or fears.

Celebrate all the moments, create lasting memories.

It’s the happiness I want them to have when I’m no longer there.

It’s been six years, six months, and 24 days.

I’ve been living my life in six-month increments.

Those on the outside looking in are scared of what they see.

It could be them as easily as it was me.

Anger is mistaken for bitterness.

Determination is mistaken for anger.

Knowledge is mistaken for negativity.

People I thought were my friends turned into ghosts.

It was easier to dismiss what wasn’t understood.

It’s been six years, six months, and 24 days.

I’ve been living my life in six-month increments.

Making friends just like me. Forming strong bonds.

Watching them get sicker, seeing them die.

Feelings of guilt while being happy, I’m still alive.

Every day I take pills.

Every day there are side effects.

Every month I have appointments.

Every six months, I get scans.

It’s been six years, six months, and 24 days.

I am living my life in six-month increments.

Wildfire Magazine Shines a Light on Changemakers

Wildfire Magazine is the very first magazine by and for young women with breast cancer. Editor April Stearns published their February/March issue this past Saturday, February 1st. Each issue comes with a different theme as well as their regular issue features such as Reader Stories, Yoga & Recipes, and Tell Your Story. This issue shines a spotlight on the Changemakers within the breast cancer arena. These are women who have realized an unmet need through their individual cancer experiences and are doing some incredible things about it. They tell their story in this issue in their own words.

Rebecca Timlin-Scalera was one of the chosen Changemakers to be featured in this issue. Unfortunately, she passed before she was able to write her story. It was my great privilege to honor Rebecca in this issue. I wanted the focus of my piece to highlight how hands-on Rebecca was running The Cancer Couch. If you would like to read the entire issue, you can get a digital or print copy HERE.  Subscription options can be found HERE.

 

Remembering Rebecca

 

It is so easy to get pulled down into the yuck that surrounds you when the words “it’s cancer” are said to you. I should say it’s so easy to stay there when pulled down into it. Metastatic cancer is a whole other elephant (see what I did there?), and it’s even harder to pull yourself out of the yuck when facing that diagnosis. I know very few people that have glanced at the yuck, said, ‘Oh hell no!’ and went on to do what no other volunteer patient run non-profit has ever done for metastatic breast cancer (MBC) research.

The Cancer Couch

It sounds like an odd name for a metastatic breast cancer non-profit: The Cancer Couch Foundation. The irony wasn’t lost; it makes perfect sense. Professionally, Dr. Rebecca Timlin-Scalera was a neuropsychologist. That conjures up images of patients lying on couches as they talk about their childhood. While Rebecca was recovering from the effects of chemo, she was where most folks hang out – on her couch. Rebecca went from sitting in front of the couch to recovering ON the couch.

Rebecca saw the need for change. She recognized that those who have breast cancer that metastasized, they would essentially be left behind due to the lack of necessary funding. Rebecca didn’t wish for change; she didn’t hope for change. Rebecca CREATED change. She did it all with grace, humor, and dignity.

The First Fundraiser

Rebecca created and organized her first fundraiser shortly after the foundation was an official 50c3 in 2016. An ingenious idea that involved teams of local school kids eating as much ice cream as possible in front of the local ice cream parlor. Teams were required to raise a minimum amount with an ambitious overall goal of $18K. The owner of Saugatuck Sweets generously donated the use of his store and staff for the event, while behind the scenes, the distributer donated all the ice cream. Over $20K had been raised that June afternoon. Due to its success, the Scoops Challenge is popular at other schools in different cities all over the country, with the funds raised going to metastatic breast cancer research.

The Cancer Beat

If a rock concert and a live auction had a baby, it would be The Cancer Beat. This gala benefit held in Rebecca’s home town of Fairfield, CT, is the party of the year. Musical guests have included: The English Beat, Howard Jones, G Love, and The Special Sauce and this past September The Wailers. I was excited to be there for the first annual Cancer Beat. I had no idea what to expect. In true Rebecca fashion, there was a blue couch (with the high heel shoes next to one end) where Rebecca was taking photos with each guest. We were all dressed in our rock star chic. While we all knew why we were there, how important it was to raise money for MBC research, the whole night was fun, exciting and, memorable. We all partied like we were rock stars.

Joining Talents

Rebecca made connections. She liked to work with other people and organizations. Begining in 2017, Rebecca enlisted the help of bloggers for a new partnership with New York-based marketing consultant, Shari Brooks, who’s mother Judy (an avid baker) died from MBC. Imagine raising money without selling, asking for, or collecting and money. Choose one of Judy’s recipes to bake and post a photo using the hashtag #BakeItHappen! Each shared and tagged photo raises money for MBC research. ($200K to date)

Her foundation joined together with Twisted Pink and Hope Scarves to create the Metastatic Breast Cancer Collective in 2017. Altogether they raised $60,000, which was matched, bringing the total to $1.2 Million. That money funded two specific projects, one in each of the labs supported by the Cancer Couch.

#Reason4FreezinMBC

This past spring, Rebecca introduced a viral challenge on The Today Show. Hundreds of people made videos of themselves, friends, and family eating anything cold – the catch? It had to be done hands-free. Not as easy as you’d think. Afterward, people uploaded the video with #Reason4FreezinMBC and encouraged others to do the same as well as donate to MBC research. In the first week of the challenge, $25K was raised.

One of Rebecca’s last public interviews was this past October. She was featured on ESPN’s Outside The Lines to talk about her foundation for Breast Cancer Awareness Month and her days as a D1 college soccer player!

From the Scoops Challenge, #Reason4FreezinMBC viral challenge, to their most significant annual event – The Cancer Beat, all of the fundraisers for the Cancer Couch raised thousands of dollars for MBC. Each year has been more successful than the last.

Educating the public was just as important to Rebecca. In every article, interview, podcast, or conversation where she shared her story, Rebecca had a way of making you want to hear more even if what she was saying was sad or didn’t have a happy ending. She was engaging and had a way of drawing you in.

So, where is the money going?

Two leading scientists working on the most promising research at the top cancer centers in the US were chosen. That kind of science requires big money. Big money is what they are getting due to Rebecca’s tenacity and the overwhelming support from her immediate family, her Fairfield family, and the community at large.

Sadly, Rebecca passed away this past December 2019. But also, at the end of 2019, a staggering 3M dollars went into those Cancer Couch Foundation selected labs dedicated to Metastatic Breast Cancer Research. Three groundbreaking papers have come from being funded by Rebecca’s foundation thus far. Rebecca’s legacy and the work of the Cancer Couch Foundation will live on.

“Some people want it to happen; some wish it would happen; others make it happen.”
– Michael Jordan

 

I lost track of the number of times I thanked April for thinking of me to write about the amazing accomplishments Rebecca made in such a painfully short time to help improve and lengthen the lives of those impacted by metastatic breast cancer. It was truly an honor. However, I would be remiss if I didn’t also acknowledge April Stearns and the Wildfire team for being significant changemakers in their own right. Not only does April produce a beautiful publication, but Wildfire also gives back. Since 2017, a portion of new and renewed subscriptions are donated to the Cancer Couch Foundation and Metavivor. 

January 2020

This is where I am supposed to say I am #sorrynotsorry to see 2019 come to an end. Don’t get me wrong, I am. Quite a few shitty things happened that impacted many people. Notwithstanding some of the fun stuff. Traveling to Cancun in January with my ride or die Tori by invitation of Michelle and Robert. Epic trip! (Thank you both again so much for inviting us!) Followed by a pit stop in Orlando to attend the Metavivor Metsquerade in February.

This slideshow requires JavaScript.

That’s where my 2019 peaked. It all went to shit after that. Don’t worry, I’m not going to rehash all the negativity and make this a pity party. No one wants to read that, and quite frankly, I don’t feel like writing about it. That’s what therapy is for. (Thank you, very much Whitney)

I have to say, though, I am not super impressed with 2020 so far. I am hopeful though, after all, it’s still January. Barely. That said, I am going to try something a bit unusual for me and see where it takes me. It’s been said that what you put out into the universe, you will get back from the universe. I know it sounds hokey. I almost feel foolish writing it as it sounds like those platitudes I cannot stand. Please don’t ask me who said it, I have no idea. But I know I heard it or read it somewhere, so I’m putting it to the test.

 

Here we go, my hopes for 2020 are as follows:

 

     1. Everyone has stable scans (yes, everyone)

 

      2. My friends who are struggling catch a big break

 

      3. I get back to writing regularly

 

     4. Spring arrives soon & Summer sticks around

 

     5. NYS passes the Medical Aid in Dying Act

 

     6. I actually get to see the big 5-0 without any crazy medical issues

 

     7. I give myself more self-care and grace

 

     8. More options & better treatments become available to extend our lives

 

     9. There will be more good news than bad

 

     10. The country gets its shit together

 

Ok. #1 and #10 are BIG asks, but it can’t hurt. Fingers crossed! That’s my list.

 

Now it’s your turn. What are your hopes for 2020?

 

 

The Couch That Love Built

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.