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Meet Becky Hall and Watch “bare” …

Some people with early stage cancer receive it as a “gift.” I get that because if you think it’s not likely to kill you, I can understand where it provides such a wake up call that you live the rest of your, hopefully long, life with a heightened sense of gratitude, joy and a new and improved perspective of what is important. However, for anyone who has incurable cancer, has lost a loved one to cancer, watched them suffer the often painful, slow death that terminal cancer inevitably brings, I can tell you – for us – this is no gift. Or, it is a really crappy one at best – like a rotten fruitcake sprinkled with anthrax, wrapped in some ugly holiday sweater kind of crappy. And I just realized how creepily specific that was so I’ll move on… Anyway –  the one, and I mean the only one, gift of cancer for me right now is the gift of friendship and camaraderie that I have found in the cancer community amongst patients, caregivers, advocates, and treaters. I had the pleasure of adding another friend to my growing list of “gifts” yesterday. Her name is Rebecca “Becky” Hall. 

In addition to having a really great name 🙂 – the “other” Rebecca is smart, cool, funny and relatable. We instantly made a connection – despite having two time zones and the entire country between us. There are so many things we have in common – the first of which is our desire to live. The second is our passion for raising awareness and funds for MBC to help make that first thing possible. However – every single person’s experience with cancer is different, no matter how similar the diagnosis. One of the big differences in our experiences is Becky’s age and life stage at diagnosis. For younger people with cancer – the impact on their fertility is often the second biggest hit they take when receiving a cancer diagnosis. For many people there are ways to have a baby even after treatment. However, for some patients – having a child is no longer an option due to infertility and adoption barriers because of their diagnosis. This is a huge loss they have to mourn in addition to their potentially shortened lifespan, lifestyle changes, and loss of body parts. If they are single, another issue is dating. For many women, having the confidence and the emotional ability to put oneself “out there” to meet someone with a bald head, no breasts, and the grim reaper looking over their shoulder – is pretty far from what most of us think of as being “sexy, single, and ready to mingle.” Rebecca discusses these issues candidly with me, she confronts them in this short but powerful film, and addresses them in a recent article featured in Glamour.

Rebecca Hall, co-writer of the short film bare, was diagnosed with stage 3 breast cancer when she was 25 years old, just after beginning veterinary school at U.C. Davis. At 29 years old, the cancer metastasized to her bones and distant lymph nodes. Despite her diagnosis, she continued to work as a freelance medical writer and editor, as well as starting her own outdoor yoga company, Santa Cruz Nature Yoga. Rebecca’s breast cancer returned again in November 2016 and spread to her brain. She underwent an emergency craniotomy, followed by brain radiation. Rebecca is now recovering and lives in Santa Cruz, CA with her husband and her dog, Harriet. Follow her journey on her blog: Cancer, you can suck it. She co-wrote and created this short film (12 min) along with Director Kerith Lemon, about shaving her head before her first chemo when she was 25 years old with the help of her friends.

 

You can view the film for free here, which they did because their goal is to get it in front of as many people as possible to help as many people as possible. They want everyone to feel empowered, to remember that they aren’t alone in their struggles, that they can get through, and they achieved it. They also wanted to bring some light to the issues faced specifically by young women with breast cancer and to metastatic breast cancer (MBC). Thank you Becky and Kerith!All of that is to say that this film is so much more than a film – it’s a tool to start much needed conversations and hopefully effect real change.

Story Idea: in Becky’s own words…
For the past year, I have been working on a short film, bare, with Director Kerith Lemon about shaving my head with my childhood friends the night before my first chemotherapy. The film focuses on this specific experience.

I was 25 when I was first diagnosed with stage 3 breast cancer. I was single and in graduate school, I didn’t have kids—I was just getting ready to live my life. I was filled with fear, and I couldn’t stay positive all the time. Shaving my head helped me process my emotions and accept that I was sick. This acceptance gave me the strength to fight. Bare is my attempt to share an honest slice of my experience with a wider audience. I hope that telling my story empowers others, and demonstrates the important role friends play in this process. My best friends’ mere presence and their willingness to listen, even if they didn’t know what to say—or sometimes said the wrong thing—meant the world to me as I faced my life-altering diagnosis.

It’s easy to see how one can get wrapped up in the seemingly superficial concern about losing your hair and breasts. As a society we place such importance on outward identity. As women we’re taught at a young age that we are our hair and breasts. That is what makes us female, and faced with the idea of losing both, it calls our identity at its core into question. I wanted to open that up to discussion, not just for the cancer community but to the female community as a whole, to one day get beyond physical and into emotional identity.

It’s never JUST about the hair.

One of our primary goals is to empower those with breast cancer and help them feel less alone in what they are going through. Bare is also meant to inspire support for research, particularly for Stage 4 metastatic breast cancer, so that we can improve and extend the lives of metastatic breast cancer patients and work towards reducing occurrences of the disease across the board, particularly in relatively young women.

Official Film Site
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Film Trailer

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How we ROCKED our way to putting 1.2M into research for MBC!

It is November 12, 2017. The Cancer Beat was October 21, 2017.

I am almost recovered.

Before I get into the details of what goes into making The Cancer Beat such a magical night…let’s get to the money talk. With approximately a quarter of a million dollars that comes in from this event alone, combined with the generous donations you all make throughout the year, and the proceeds from our incredible Scoops Challenges, Swim Challenges, and Bake it Happen Campaign (and now for next year – the MOMBIES viral video!) we, along with our MBC Collective partners Hope Scarves and Twisted Pink, were able to put 1.2 million dollars into these two cutting edge labs at Dana-Farber and Memorial Sloan Kettering this year for metastatic breast cancer research!

Yup that’s right – 1.2 million dollars! We did that. All of us. Thank you so much for helping us achieve this! This magical, fun, amazing, and successful event takes a full year to plan – and almost as long to bounce back from :). We have already started planning for next year – worth every minute. My brilliant, artistic friend Casey Caine once again transformed the The Warehouse at FTC …

into this …

She even put my mug on the program!

That sparks the magic…the incredibly cool decor that Casey creates to re-invent the space each year. Next, we have our amazing volunteers (Stef, Robin, Shelley, Jackie, Caryn and Kim) who spent months planning and cajoling other amazing event volunteers (Karen, Mary Ellen, Nancy, Sarah, Gabby, Cecily, Claudia, Lori, Sue, Paige, and I know there were others I am missing!), getting ad space and sponsors, helping with guest lists and a million other details. Viv and Pam thank you both for working so tirelessly on the program. A big thanks to Tracy Locke (Mike and Danielle!) who graciously donated their printing services, allowing us to bring in $21000 in program ads! And a shout out and thank you to Nicole B and Steph G who tackled the three page Rider for the band – teacups and all! Here are some more pre-event shots of the team getting everything ready…

Thank you to WEBE 108, Mofly Media and WTNH Channel 8 for being our media sponsors this year and to all of our generous sponsors, including our year round marketing sponsor Vegalash!

Talk about planning. Carol Lentini, of Along Came Carol  – who, despite having just lost her husband and partner in everything – the lovely Marc, rallied and served her delicious food for this event. She blew us away with both presentation and taste. And, knowing that she has been a chef to the stars (Michael Jackson and Bruce Springsteen to name a few) her special dinner party for 12 at home – went for $22,000 as we had not one – but two – of these auctioned off! Thank you Carol! Scott, Robin, Anne, Tom, Suzanne and Dave. Don’t forget you all said you’re inviting me for dinner!

By the way, do you know that my beautiful, kind, talented friend Lisa Garcia of Photography by Lisa Garcia, and her generous team – volunteer all their time and talents to take these photos for us? We love you Lisa and team! (Lisa, I’m only 5’4″ and I look like Andre the Giant in heels next to you!)

Speaking of volunteers…

Bill Brennan

 

Did the amazing Bill Brennan really know what he was signing up for? “Bill, can you bring in like 50 grand in our live auction with 5 items in 40 seconds? Oh and then do a paddle raise and get another 25K! Go!” Thanks Bill!

 

And then there is the incomparable Howard Jones, featured here doing meet and greets back stage with one of our local sponsors, Josh from Vinyl Cafe, and me and my awesome college friends. He is the loveliest, most understated rock star. I was teasing him before the show asking for a “fun fact” about himself that his fans might get a kick out of. He is so humble that it took about three hours before he finally came up with the “fun fact” that he likes 10 pin bowling. To which I replied, “Um…ok rock star, I’m not sure how fun that is, but it is definitely a fact. Can we do any better than that? C’mon you’re a rock legend.” To which he said, “Well, there was this one time when Mick Jagger was in my dressing room and…” I cut him off right there and said “Ok, simmer down big shot – now you’re just bragging.” He is so endearing and kind, and his music and voice are as relevant and strong as ever.

    

The real magic of the night however, was getting to honor our beloved Beth Calabotta and Holley Kitchen with post-humous advocacy awards that were accepted by their families. Thank you all for being with us Dave, Mary, Teri and Missy. Thank you to my “other daughter” Grace Pelle (aka the next Taylor Swift!) for singing “The Fight Song” to kick off the night to Holley Kitchen’s video, and to all the breast cancer survivors and thrivers who joined me on stage.

Thank you to our incredible friends and family from Cheshire, CT – who came in style in their rockin’ party bus…hosted by my sis and bro-in-law Viv & Marc Ciampi! Thank you Cheshire, I love you guys!

I made out particularly well in the Live Auction this year as not only am I getting to attend both of Carol’s fabulous 12 person dinner parties, but my generous friend Kyla Ricci was the winner of the chance drawing for a 5 star weekend in Paris sponsored by Cruise and World Travel …and she is taking me! It was like a reverse Oprah moment when her name was announced by last year’s winners Gregg and Melissa and I was so excited to be able to give this trip to my sweet friend and her husband, but then she flipped it around on me and announced I would be her plus one! It must have been all that “dirty weekend” talk that made me an obvious choice :)! And then, 4 other girlfriends of ours decided to join us. So, look out Paris…there will be six of us headed your way for an epic ladies weekend in February!

We also have a special shout out to our “Whole Beat Table” donors: Tom Quinlan, Rob & Cindy Citrone, and Peter & Susan Armstrong – Thank you for your generosity!

Thank you to The Armstrongs!

My husband Tom was a great sport about sharing his birthday with all of us and matching the generous $25,000 paddle raise you all brought in for his bday gifts! For some strange reason there is nothing more he wants than to have me around for more of these so thank you all for your generous bids, and to Tom for trying to keep me around to nag him on more birthdays :)…

And last, but most certainly not least…

Thank you to the men, the myths, the legends…our heroes, Dr. Sarat Chandarlapaty and Dr. Nikhil Wagle and all of our friends from Dana-Farber Cancer Institute (Erin) and Memorial Sloan Kettering Cancer Center (Janie, April, Heidi) who came to the event and who support us all the time in all we do! We let them out for a few hours to party with us and talk about the amazing work they have done with our funds from last year. Then we told them to get right back to the lab and go cure cancer!

As many of you know, this past September I received the very difficult news that my cancer has metastasized. I was among the 30% of those with early stage breast cancer who metastasized to Stage 4. The foundation that I started, to help others, will hopefully help to save my own life as well. I have not published this information until now because we just told our kids this news last night.  More than ever, I so appreciate the self-starter campaigns like Bake It Happen, The Mombies, and the Scoops and Swim challenges that people are running for The Cancer Couch! Let’s keep the momentum going, share this website with your friends, sign us up for an employee match or united way donation, have a jeans day or dress down day at school, host your own Scoops or Swim challenge (we have all the instructions and gear), or something else that works for you, or just donate! So many lives, including my own, depend on us making real advancements in mbc! Together we can move the needle – look at what we’ve done in just our second year! Thank you all so much for your support!

             dana-farber

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THE FAIRFIELD MOMBIES – in honor of #bestpatientever

The Fairfield Mombies

thousands of us, in the mbc community, and beyond – are heartbroken as we prepare to say our goodbyes to our beloved friend, Beth Caldwell. she is so loved by her readers Cult of Perfect Motherhood. her friends in MET.UP and Metavivor. every breast cancer patient, researcher, advocate, politician, and journalist across the globe, who’s life she ever touched. and for us – her huge mbc community. she is our compass, our friend, our biggest cheerleader.

okay beth, if J is reading this to you – i have to know that maybe there is a chance that i can still make you smile. maybe j will tell me, if you can still hear this, AND appreciate my humor. the later being the taller order. J -if u can please tell beth that, in addition to loving her – i want to tell her two things that i hope will give her a smile. 1. beth, please know that you needn’t ponder if your t-shirts are the coolest ever, or not…they are. the coolest. ever. always. amazingly so beth, really. do you have a t-shirt guy that silk screens out your every thought? its impressive. i also want you to know, that your relationship with #bestdocever (which is what Beth calls her awesome oncologist), is fantastic, but always makes me feel like i should be closer to MY oncologist, like go see a game together kind of way. but then i think, no. we’re cool. only Beth can be the #bestpatientever.

my community did this for The Cancer Couch, and sharing this is my honor to my friend and champion, Beth Caldwell. by viewing, donating, and sharing the incredible video below, you can raise money and awareness for metastatic breast cancer (MBC). MBC advocacy, after a career as a civil rights attorney, has become her life’s work.

#wecantwaitanotherelevenmonths.

instead of “tricks or treats” this year, these ladies turned something, that started out as creative and fun, into something amazing and

life-savingly good …YOU HAVE TO SEE THIS!!! The Fairfield Mombies

 

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Want To Go To Paris…On Me?

By now, I hope you have purchased your tickets for the upcoming 2nd annual The Cancer Beat on October 21, 2017 at 630pm (VIP entrance time) at The Warehouse in Fairfield, CT featuring Howard Jones in concert! General Admission entrance at 845pm. If you haven’t, you’re going to want to do that today as there are only a very limited number of tickets left. We anticipate selling out within the week. Purchase tickets here!

Once you have your cool tickets in your hot little hands (well, your name just goes on a list) you are ready to buy your tickets for the Chance Drawing to win a 5 star weekend in Paris with airfare, hotel and amenities donated from our friends at Cruise and World Travel! For just $20 you could be leaving The Cancer Beat with this amazing package. Unlike the Live Auction items – you don’t have to lay down a ton of cash to win this experience AND General Admission ticket holders are eligible to win too! You just have to have a chance drawing ticket and be present at The Cancer Beat at 10:45pm when the lucky winner is announced so someone in the room will win!!! Buy your Chance Drawing Paris tickets here!

To motivate you further, please hear from the lucky winners of last year’s 5 star London weekend, Melissa and Gregg…

“Gregg and I could not have been more ecstatic.  “We’re going to LONDON!” was all everyone was chanting on the party bus home.  What a night with friends, the first annual Cancer Beat concert and fundraiser was exceptional in every way and we would go on to learn, a huge success in raising funds and awareness for metastatic breast cancer….and Gregg and I won the trip to London!

Amidst a sea of friends dancing and celebrating life, Reb stood on stage and drew our names as the winners of the raffle to London.  It was surreal.  I remember hearing Reb say over the microphone, “Where are Melissa and Gregg Crerar?” and thought, “Oh no, what has Gregg done now to get us into trouble?”  I wasn’t sure why Reb was calling us out on stage.  Never in my wildest dreams did I think it could be because we were the lucky winners for the London trip!

It just got better from there.   At the end of the evening, Gregg and I were given the most beautiful basket and gorgeous handbag filled with information and gifts that revealed all of the details for the trip:  2 round-trip airfares, two nights at the Stafford, high tea at the Ritz, and a 5-course luncheon at Celeste in The Lanesborough.  The vouchers indicated that in order to organize the trip, we should work with Cruise and World Travel in Fairfield.  As with anything one wins or receives for free, Gregg and I expected that there would be some catch associated with making this trip happen.  Are you ready for this?  We were wrong.  Dead wrong.  Not a single thing was needed on our end, nothing, nada, nichts, nulla, niente.  Just our passports of course.  Soup to nuts, Joan and her staff at Cruise and World Travel assisted us through a handful of different ideations of the trip…should we try to add on a couple of nights in Paris, should we bring the kids, can we get to a soccer game, etc.  In the end, we decided to go ourselves and spend three amazingly luxurious nights in London.  Everything was exquisitely perfect.  The junior suite at The Stafford, its location (St. James/West End), the incredible hospitality of every member of the hotel staff, the shopping and theater, the beautiful March weather (think everything is in bloom and spring flowers), multi-course dinners with delicious wine and cocktails extending late into the night (the time change worked in our favor!), and of course, the sight-seeing.  It was like a dream, and at every pause we took, we remembered how it was that we got there, the incredibly important work of the Cancer Couch Foundation and Rebecca Timlin Scalera’s intense commitment to fighting metastatic breast cancer. 

Reb’s spirit is contagious and brave, and the work is imperative, yet it is not easy work.  The scientists who The Cancer Couch is supporting can testify to this.  We were very lucky to be a part of the generous extended efforts of the Cancer Couch.  This work is not done and the fight is ongoing.  Please consider supporting this important fight by buying your raffle tickets for this year’s Cancer Beat European raffle to Paris.” – Melissa

 

  

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Bake It Happen!!!

“This October, all you do is bake and share, then $5 gets donated to The Cancer Couch Foundation to fund Metastatic Breast Cancer research #bakeithappen #breastcancer www.bakeithappen.net

– Shari Brooks, Bake It Happen Co-Founder

Ok friends of The Cancer Couch, it’s October and we all know what that means…breast cancer awareness month! If you have been following along here the past two years, first of all – thank you! Second, you have probably learned at least one thing – and that is that our focus is to not only include Stage 4 breast cancer patients in the larger narrative about this disease especially during October – but also to put funds directly into research to find treatments for metastatic breast cancer as there are so few and still no cure. We are racing against a very scary clock here. SO…

How can little ol’ you help save little ol’ me and the lives of so many others? I’m glad you asked. A surefire and super easy way to help during the month of October is to bake. You don’t need to raise money or even spend money – beyond what the ingredients cost. Just click on this link, bakeithappen.net to find out the creative idea my pal and fellow Ford Model of Courage, Shari Brooks, and her sister Stacy Pagan came up with to honor their mother’s memory and raise money for metastatic breast cancer. The Cancer Couch Foundation is so honored to be the beneficiary of the Bake It Happen campaign this year.

Bake It Happen is great for so many reasons. It’s fun, creative, easy and tasty! They simply ask you to go to their website to get the featured recipes, bake the recipes, and share with friends and family. Take a photo of your masterpiece before you shove it down your pie-hole though! For every photo posted of your Bake it Happens, they will DONATE $5 to The Cancer Couch Foundation! If you are not a social media queen or king – don’t worry – just old fashioned email will work too (they have that on their website!)

My daughter and I had so much fun doing this last year – we baked every weekend!

You can, of course, always just donate if you DON’T LIKE TO BAKE but DO like saving lives $$$!  We have received $1750 in straight up donations already. Also, people who bake can also donate!!!  And, people can bake all month long as many times as you like!

  • Post your baked good photos to our Facebook page @ubakeithappen with #bakeithappen
  • Post your baked good photos to your own Facebook page with #bakeithappen
  • Tweet about BIH
  • Instagram your awesome baked good photos with #bakeithappen to your profile and tag @bakeithappen00 too!
  • Snap photos of your Bake it Happens on snapchat with #bakeithappen

For more information on this great campaign, check out the Press Release

Happy baking! Here are Shari and I with the awesome ladies of The Daily Glow – kicking off the campaign from NYC yesterday!

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Making A Splash for MBC!

Cheshire, CT Swim Challenge

 

Not many people could get me to don a swim cap, never mind a “sporty” swimsuit, with neither a tan nor my ideal weight in sight AND allow the entire incident to be photographed and shared publicly! However for Beth Calabotta, I would do anything.

bathing beauties(I even let my much more athletically inclined sisters laugh at me for my inability to get all my hair up under said cap. Don’t worry – I stopped laughing long enough to tell them they look like Coneheads from Saturday Night Live and splash them in their sporty faces.)

 

My friend Beth, who was taken far too soon from this illness, believed in me and what this foundation is capable of. She wanted to be a part of that even though she knew her time was limited. Smart as a whip and one of the most effective people I’ve ever encountered – of course Beth figured out a way to do that. She made sure that the Beth Calabotta Swim Challenge – which had been started in her honor in Quincy Illinois – would carry on in her name and that all the proceeds from this event would go to The Cancer Couch. Her incredible friend Carrie Company has spearheaded the mission to not only keep this going but grow it as well.

My sister and her incredible friends in Cheshire CT put together this swim challenge for the 2nd year in a row and this year I was able to participate. I had not swam in a really long time – and frankly was a bit out of shape going into this. However, as I dove in the water to start what I thought would be a half mile of swimming – I channeled Beth with every single stroke. I had just received some difficult news about my cancer and was going into another surgery just a few days after the swim so I had a lot on my mind. I wanted to give up several times – but I could hear Beth in my head cheering me on and I imagined her pushing herself to swim, to be active – even when she was in so much pain and had broken bones from the metastasis. She never gave up – so I didn’t either. I swam one whole mile that day – with Beth by my side.

However, just when I was feeling all proud and smug about what I considered to be my Uber-human accomplishment, I learned that my daughter Bella – who hasn’t swum a lap in years if ever – swam TWO miles! My niece Bri swam a mile and a half and she had never even swam a lap! I guess I wasn’t the only one impacted and inspired by Beth to push above and beyond what we thought we were capable of. I was humbled by all those who came out to swim, count laps, cheer, or volunteer at all three events – carrying on the legacy and the triumphant, indomitable spirit of Beth Calabotta.

So far this year – three Beth Calabotta Swim Challenges took place and $15,000 was raised which will be matched to become $30,000 for research. Thank you to everyone for keeping this event going and if you’d like to host one in your town or join us next year – please shoot us an email at rebecca@thecancercouch.com.

Quincy, IL – the original Swim Challenge locale…

Davenport, IA – run by Beth’s parents…

 

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THIS Is What You’re Funding – Part 2!

My dad and my sis told me I was unclear in my last update on the amazing findings we have funded at Dr. Sarat Chandarlapaty’s lab at MSKCC.

Well, after all this chemo and anesthesia I’ve had – it is certainly possible that I may actually be too daft to even dumb down their brilliant work properly, but here goes my second attempt…

  • There is a common combo of 2 meds that most patients are put on when their breast cancer metastasizes and the average time it works is 2 years.
  • Sarat and his team studied the tumors and blood samples of those patients who were failing on this combo after just a few months to see if they could find a common issue.
  • Well, guess what? THEY DID! A genetic abnormality they did not expect to find so soon but did!
  • That is amazing because it not only lays the groundwork for better medication, but potentially also screening blood work tests that will help indicate more precise treatment options before someone with this abnormality is even put on this combo that we now know will fail.
  • This is a HUGE finding that THE CANCER COUCH FUNDING made happen (THAT IS ALL OF YOU!) in just one year. We gave them $125,000 which was matched to make $250,000 and look what they did with it? Every single dollar went to hard, productive, amazing, life-saving work. Bravo Sarat and team!!!

Speaking of life-saving work…

I had the pleasure of visiting Boston earlier this summer to not only relive the Joshua Tree album with U2 and visit the Boston Breakers to plan our upcoming Pink Game (9/30), but also to meet with our wonderful researchers at Dr. Nikhil Wagle’s lab at Dana-Farber and learn about the amazing work they have been doing. As promised, when I started this foundation, my goal is to keep our donors as well informed as possible so you can feel completely connected to the labs and know EXACTLY where your hard earned dollars – that you have so generously donated – are going!

One of the many things that makes The Cancer Couch Foundation different is that we have cultivated such strong personal relationships with the researchers, labs and institutions we are funding. Trust and good communication are core values we hold strongly. We are so thrilled to see those same values within the teams we fund. It is my pleasure and distinct honor to introduce Dr. Nikhil Wagle’s lab team at Dana-Farber:

They are not only whip smart and dedicated, but fun as well. The team was heading out to a Red Sox game together that night…and here they are!red sox game

They value teamwork and relationships and know that happy, well-balanced researchers (who see more than through their microscopes) will do the best work. Thank you team for the life-saving work you have dedicated your lives to. Here is what these Fenway fans are up to besides cheering on the Red Sox:

Tumor Evolution – Acquired Metastatic Alterations

Dr. Nikhil Wagle and his colleagues have been hard at working trying to learn as much as they can about how breast cancer mutates from the primary site (the breast) to the metastasized site(s). One of the things they are looking at in particular, that we are funding, is acquired HER2 mutations in ER+ breast cancer. Thanks to funding from The Cancer Couch and a few other wonderful organizations – they have been able to write a paper already with some substantial findings!

Here is my attempt at a lay person description of the results for the rest of us mere mortals trying to understand this:

  • Some patients with breast cancer that is estrogen receptor positive (ER+) and HER2 negative (like me!) can develop HER2 mutations when their cancer metastasizes and becomes resistant to routine endocrine therapies. The problem with that is that in these tumors that develop HER2 mutations, the meds they are on – like the ones I’m on – no longer seem to work to stop their cancer from spreading. This looks like it is yet another way we can develop resistance to these drugs. This is what makes metastatic cancer so hard to treat. It mutates so much from the primary site – so what you thought you were treating, or what you treated before, is no longer relevant or helpful.
  • Resistant ER+ breast cancer remains the most common cause of breast cancer death. Dr. Wagle’s research – that The Cancer Couch has been funding- found that in some patients HER2 mutations are a mechanism of acquired resistance to endocrine therapies (i.e. – a big reason why the meds stop working). But they also found that resistance that occurs in this way can be overcome by combining specific therapies to address that particular acquired mutation! This means that if doctors can keep identifying the acquired genetic alterations in metastatic biopsies that lead to resistance (unfortunately there are many)- we can try to use targeted therapies to overcome these mechanisms of resistance which will help us move towards even more precision treatment!!!
  • The MBC Project (mbcproject.org) is a vital part of these discoveries because this is a database of genetic information from patients with metastatic breast cancer. So if you have MBC and you have not yet donated your saliva to this project, please do so!
  • Our funding of $125,000 last year, which was matched, put $250,000 in Dr. Wagle’s lab leading to his ability to complete a groundbreaking paper on his findings. Dana-Farber featured our contribution in their recent newsletter June edition of Impact:

Impact

Every single dollar goes to great use for vital research – I can promise you that. The labs we fund complement each others findings but are not redundant. We are hitting this disease as hard as we can and are truly in it to win it!  Thank you all for your support – please continue to spread the word!

If you have not already purchased your tickets to our signature event, The Cancer Beat…featuring Howard Jones and honoring the advocacy work of Holley Kitchen and Beth Calabotta (posthumous) on October 21, 2017 at The Warehouse in Fairfield, CT – please do so here.

Or … consider attending the “Give Cancer The Boot” game in Boston on 9/30/17 with The Boston Breakers by getting tickets here,

Or… the “Pink in The Park” game on 9/15 in Bridgeport, CT with the Bluefish Baseball team … get tickets here! 

 

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Be A Fan For Funds!

I’m going to keep this short and sweet…like the eclipse, and hope that you will find a fun way (or ways!) to come out and join us to help fund critical research for treatment of metastatic breast cancer!

You can come to a Pink In The Park Baseball Game for the Bridgeport Bluefish on September 15th at 7pm! The league with the highest attendance gets to have all their players that have tickets stand on the field with the team during the National Anthem! We have a section of awesome seats behind home plate and this will be their historic final season here – so you don’t want to miss it! The first 100 people to buy tickets will receive a limited edition ball and there will be tons of fun giveaways at the game! Right now Cheshire, CT and the Fairfield, CT National leagues are tied for the lead for highest ticket sales!!

The link is on our home page here http://www.thecancercouch.com

And… the Boston Breakers women’s professional soccer team is partnering with us for their Pink Game September 30th 530pm at Harvard in Boston! Click here for tickets or call 617.945.1704 to purchase a limited number of VIP packages to sit with us (The Cancer Couch Crew) and have a picnic included on the lawn for the game!

And finally… we can now officially announce that it is Howard Jones who will be performing at The 2nd Annual Cancer Beat on October 21st 630pm-11pm at The Warehouse in Fairfield CT! Click here  for tickets! 

Cheer, dance, eat, socialize and have fun but…do a life-saving great deed while you do it! Please come support one or more of these events! Remember, we give 100% to research and our donations are matched and doubled!!!

 

 

 

 

 

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  • joy

Finding Joy Amidst Scanxiety

“I get by with a little help from my friends…”

A few months ago I wrote a blog called Radioactive Reb. 

This was about the incredibly stressful experience that advanced cancer patients have of undergoing PET scans to see if their cancer has grown, spread, shrunk, or changed in any significant way. That PET scan ended up being inconclusive, and it was decided that another one would be done in eight weeks. Fast forward eight weeks and starting a week ago, I began sweating out that call from my oncologist with the findings.

The waiting is brutal. So many things go through your mind. At certain moments, I become convinced that every single pain in my body is certain metastasis. In fact, I start to believe I can feel the tumors growing as I sit here. Cray Cray. Other times, I know – I just know, that things will be stable. They have to be, right? Of course. I need more time.

Then I think about my friends Beth Calabotta, Champagne Joy, and Samantha Stohr – they all needed more time. They all needed clean, stable PET scans. They didn’t get them. I know that no matter how badly I want more time, I have no more guarantee than they did that I’ll get it. And of course the reality is that even if this one is stable, the next one very well may not be.

This is a challenging way to live. The life of a cancer patient is plagued by constant uncertainty and a very raw awareness of one’s mortality. We have lost the luxury of ignorance afforded by existential denial. So, as I found myself becoming an anxious ball of nerves and feeling like my life was on “hold” until I got my results, I realized that this is not a comfortable or productive way to exist. I needed to find a better strategy to live well in between and during these scans, procedures, results, etc. for the rest of my life. Am I going to let the outcome of each visit or test dictate my mood and actions? Or am I going to decide how I want to live and feel and stick to it no matter what is said on the other end of “that call,” and the call after that, and the call after that.

Of course – I could allow myself to be miserable. I could be a nervous, whiny, miserable wretch of a person (and believe me sometimes I am). We all have things in our life that could justify being that way. Insert divorce, financial stress, grief, disability instead of cancer … we all have something. But…that is no way to live, waiting for something to happen or to pass until you start living your best life. This makes no sense, especially when you are acutely aware of how limited your time to “live your best life” may be. I don’t want to live like that. I want to choose joy. I don’t mean Christmas morning jumping up and down joy or “I just won the lottery” joy. I want to find and maintain a sense of joy that is peaceful, internal, and enduring, not caused – or altered – by external events. I believe this is the challenge that my current life situation is offering to me.

So…here is how I am finding joy in the midst of the unavoidable external stress of going through scans, blood work and biopsies that will have life and death results:

  • I had one of my lifelong best friends come meet me at the PET scan this time. I usually go alone and realized there really is no reason to. Even though she didn’t need to really “do” anything, just having someone there that loves me and whom I’ve known (since I was 6!) was so comforting. It reminded me of so many good things in my life and all the love and support I have from her and so many others. Also, it gave her a glimpse into what my life is like as a cancer patient and helped her feel more involved in this situation that makes so many loved ones feel helpless. All I had to do was let her in. I found Joy in opening my heart.
  • Instead of constantly working on the foundation like I normally do in some way shape or form, I decided to bring headphones to that appointment and treat myself to watching a few hysterical episodes of one of my favorite shows, GIRLS, while I got the IV, drank the glucose, and waited the hour for my body to be ready for the scan. I felt joy not only in the fleeting emotions that come from laughing and getting caught up in the drama, but lasting joy that I was able to comfort myself and give myself permission to experience that. I found Joy in nurturing myself.
  • The next day – again, I made time to do little things that are meaningful to me. I sent a friend, who is across the country, a package that I thought she and her family might enjoy. I found Joy in caring for others.
  • Learning from last week’s PET scan, I invited my childhood friends to join me at my appointments again this week and we decided to make a two day event of it in NYC:

Here we are arriving at Memorial Sloan Kettering Cancer Center – first stop Blood Draw! These guys spoiled me rotten – carrying my bags, calling Ubers, holding doors, and they really showed their love for me when they refrained from making crude jokes and heckling my oncologist during my physical exam (as they had threatened to do) while they sat two feet away silently cracking up and making faces like 12 year olds at the hilarity of me getting an unclothed exam with 6 people in the room watching, and while I chatted away about all my gross surgeries and gave the wide-eyed, unsuspecting young med student far more of an education than she was looking for, EVER. Thank you ladies 🙂  I found Joy in feeling loved.

 

After a stressful, emotional day in our hotel getting lab results and on and off calls with my doctor, we decided we needed a pure comedy night. We needed to laugh. This is what I love about NYC  – that on a random Monday night – you can do just that. We went around the corner from our hotel to a live comedy show, then…still in need of some more chuckles, we went a few blocks north to see a hysterical movie. I found Joy in finding humor.

 

The next morning, we took up residence on a few comfy lounge chairs by the pool and stayed there from coffee to cocktails.

We were waiting for more news and it was an opportunity to practice feeling at peace and joyful no matter what I was dealing with or waiting for. To practice feeling joy in the midst of so much stress is challenging. Of course it did not hurt that we were lucky enough to be in this incredible oasis that made you feel like you were in South Beach Miami – in the middle of Manhattan.

However, despite the gorgeous setting – I found myself sinking back into that black hole of fear and despair about my situation. It was a good reminder that it does not matter where or who you are. You can feel despair even in a place that looks and feels like paradise if your mind is not at peace. I had to continually challenge myself to focus out of it and maintain peace and joy in my mind. To do this, I needed to detach a little bit. I don’t mean that I stopped caring about living or the people I love, I just stopped holding onto everything so tightly and tried to just accept what was happening in the moment. It is extremely hard to feel anxious if you are completely focused on the present moment – unless of course a hungry bear is standing in front of you -but luckily that was not the case. But to detach from worrying about the future, or regretting or holding onto the past is to free fall into the present. That is where I found my peace and as a result, joy. I found Joy in staying in the moment, taking one breath and one moment at a time.

Again, we took calls back and forth from my doctor and it was a stressful day, but being in this setting, continually coming back to staying in the moment, and having the support and humor of friends, family, and my medical team just made me feel wrapped in love. I am not alone. I found Joy in feeling connection.

NYC Girls Trip

I am home now and those feelings of quiet joy have endured. It takes practice – just like working out a muscle. Coming back to the moment – detaching a little from the past and future – and letting go of what you can’t control, remembering your connection to the 7 billion other people on the planet, your humor, your love, free falling into the present – and knowing you are exactly where you are meant to be at this moment in time – this all allows me to find peace and joy in my mind. Despite the fact that there are many unknowns and having cancer is beyond unsettling, I am figuring out my new normal and not waiting for something good or bad to happen or pass to get there. I choose to feel at peace right now, no matter what, because the only thing any of us can be sure of is this moment we’ve been given, right now. Don’t waste it.

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  • mskcc funding

THIS IS WHAT YOU’RE FUNDING!!

As promised, when I started this foundation, my goal is to keep our donors as well informed as possible so you can feel completely connected to the research and know EXACTLY where your hard earned dollars – that you have so generously donated – are going!I have been busy traveling around to visit our wonderful doctors and their labs to learn about the amazing work they have been doing since we started funding them last year.

One of the many things that makes The Cancer Couch Foundation different is that we have cultivated such strong personal relationships with the carefully chosen researchers, labs, development teams, and institutions we fund. Trust and good communication are core values we hold strongly and these personal visits help strengthen and foster these vital relationships. Just as one cancer cell alone can’t kill us, one person alone can’t cure cancer.

Without further adieu, it is my pleasure to provide an update on the incredible work being done at

Memorial Sloan Kettering Cancer Center in NYC, 

by the elite Metastatic Breast Cancer research team of Dr. Sarat Chandarlapaty’s lab…

sarats lab

In less than one year since we have funded his lab, Dr. Chandarlapaty and his team of researchers have found a discovery that will enable them to write a paper and seek long-term funding from the government to fund research on next generation therapies for ER+ MBC. That is the whole idea behind why we fund the way we do. We are supporting the best and the brightest in this basic science so they can get results for work that would not otherwise receive funding and help them get to the next level where federal funding and big pharmaceutical funding will help them get their work turned into a medication on the market – or new insurance approved blood tests that can have vital clinical implications for MBC patients! Their work compliments what Dr. Wagle and his team are researching at Dana-Farber, but they are looking at it from a different angle (as there are almost endless angles to metastatic cancer!).

Identifying Causes of Resistance to Hormone Therapy and Palbociclib Combination Treatment:

Specifically, this team is looking at patients with MBC whose cancers don’t respond as well to the now fairly common (for ER+ Her2- MBC) treatment combination of hormone therapy and Palbociclib. They are trying to find commonalities amongst those who stop responding to the drug before the median timeframe of two years so that this can lead to more effective treatments. Well, by looking not just at biopsies of metastatic lesions – but also at their plasma (simple blood samples) they actually found a rare mutation many of these patients had that seems to be responsible for outsmarting this treatment combo and leading to progression of the disease.

See, the way estrogen causes cancer is to tell this guardian of cell division, known as Rb, to step aside and allow the cancer cell to grow and divide – so these drugs inhibit that process….the drugs restore the guardian’s function. However, they found an unexpected pathway when they looked at samples in the petri dish and through both tumor biopsies and blood samples showing that in patients with two particular gene mutations – the guardian, Rb, was again deactivated despite the ongoing presence of the drugs. This now paves the way for the development of new drugs to overcome these mutations.

What they found – is like finding a needle in a haystack – but because we gave them $125,000 which was then matched to put $250,000 directly to this lab – that covered the cost of a fellow, some of Sarat’s salary, and the equipment and supplies need to conduct this study. WE DID THAT! YOU DID THAT!! Every kid that ate ice cream for us, every ticket you bought to The Cancer Beat or a PINK GAME – every donation you sent in. Every single dollar was matched and led to this. THIS IS HUGE! This is literally going to save the lives of countless people in years to come – us – our kids, their kids, etc.

Thank you thank you thank you from the bottom of my heart to every single person who supports TCCF and what we do in any way big or small. It’s all BIG actually. Thank you to these elite research teams who are dedicating their lives to helping us find a cure and extend lives. WE ARE MAKING THIS HAPPEN TOGETHER! WE ARE MOVING THE NEEDLE FOR MBC AND ALL CANCERS !

Read below and just imagine where we will be in the next ten years with more awareness and funds being directed to MBC!!! Incredible! Stay with us and help us keep supporting this amazing lab doing this life-saving work so they can take it to the next level this year! Update on Dr. Nik Wagle’s work to come…

5 year rate

 

 

 

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  • EJ!!!

Warning: Graphic Content

EJ!!!

Fierce!

In a million years – if someone told me you could cure cancer by eating ice cream, I would not have believed them but…sometimes fact IS stranger then fiction. When I was diagnosed with advanced breast cancer 19 months ago, my community, family, friends and my KIDS rallied around me and we all put our heads together to figure out a way to try to save all of us who are, and countless others who will be, impacted by this disease. The LAST DAY OF SCHOOL SCOOPS CHALLENGE was born out of this collective effort to come together as kids, moms, dads and community members to kick off the summer with fun while also giving back in a huge way and making the world not only a tastier, but also a much better, place by funding research for the hugely underfunded – metastatic breast cancer!

This June, the 2nd annual Fairfield, CT scoops challenge raised almost $24,000!!!! A huge thank you to my sis Paula and our incredible volunteers Steph, Nicole B, Stacey, Mary Francis, Sarah, Tricia, Vicki, Mary, Nicole C, Danielle, Andrea, Maura, Kyla and Judy O’Donoghue!! A big thank you to Rudy’s Executive Transportation and of course our main sponsor – Saugatuck Sweets of Fairfield, CT!

We are so honored to have Ford Warriors In Pink as our marketing sponsor of this event, which is going NATIONAL! Check out the awesome banner Vicki, Paula, and The Ford team put together:

Here are some highlights of this fun event courtesy of Photography by Lisa Garcia:

Now, while we may have had the benefit of a professional photographer at The Fairfield event to capture all that fun and good will… the Cheshire, CT event, sponsored by the incredibly generous and delicious Sweet Claude’s, blew us all away with their spirit and unreal fundraising! These kids and parents brought in almost $40,000!! Can you believe it? The winning team – Magic Mike and his buds raised $4840 by the 9am cutoff!  However The Lactose Intolerants also nailed it with $5165 and The First Grade Ice Cream Lover and Cancer Crushers donated $3847! There was a $100 entrance fee for these teams and they went WAY ABOVE and WAY BEYOND anything we could have ever imagined!! Thank you thank you thank you so much to all! Especially – a huge thank you to my sis Viv who put this together for the first time in Cheshire with help from Zach, Marc, DJ, and Ellen Ciampi, Kristin Kurtz, Nicole & Jean Staples, Mary Kilpatrick, Janelle Margolies, Flavia and Sabrina Cass, Susan Jaramillo, Charlie and Maricelle Riemann, Brenda Downey, Susan, Elizabeth and Nathan Beaudoin, Catherine Takizawa, and our angel donor…Betsy!!

Since 100% of our donations and event proceeds are matched and go straight to research – this means that in just 2 days of super fun ice cream eating – these kids and their amazing parents put over $120,000 into life-saving research for metastatic breast cancer at Dana-Farber and Memorial Sloan Kettering!

Thank you so much to all our participants, sponsors and fans! Please consider hosting a scoops challenge in your town and we will honor someone in your community with breast cancer by starting a fund in their name at their local cancer center to benefit patients with metastatic breast cancer in financial need. Contact us at rebecca@thecancercouch.com to get a turn key kit – we will send you everything you need to do this!!!

I scream, you scream, we all scream for ice cream!

 

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Pink In The Park Game – 9/15/17 ~ 7pm Pick Up Tickets at Will Call That Night

Fairfield American Pink In The Park Tickets

Add dinner if you’d like!


Fairfield National Pink In The Park Tickets


Add dinner if you’d like!




Cheshire, CT Little League Tickets


Add dinner if you’d like!



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  • The Cancer Beat

Tickets Now On Sale For The 2nd Annual Cancer Beat!

That’s right – tickets are now live and on-sale for the 2nd Annual Cancer Beat which will take place October 21, 2017 at The Warehouse in Fairfield, CT featuring the one and only…because he is currently on tour – you have to go to the site to find out who our exciting rock star is this year! Catering by Along Came Carol featuring the Rock-Star culinary skills of Carol Lentini – who has cooked for the likes of Michael Jackson and Bruce Springsteen to name a few!

The Cancer Couch is going high-tech by going mobile with our ticket sales and chance drawing tickets! You can now purchase tickets to the 2nd Annual Cancer Beat, donate, become an event sponsor, place an ad, and buy tickets for the chance drawing to be the lucky winner of a 5 star weekend getaway to Paris (you must be in attendance to win) all on-line! The exciting music themed Live Auction will still take place at the event but we will announce a preview of the items on this site before the event. We will also have a way for you to text donations at the event!

Don’t worry, volunteers will be in place throughout the night to assist with all of this, should you have any questions (Thank God!).

How it works:

• Purchase tickets or register online at https://www.501auctions.com/thecancerbeat

Purchasing tickets and registering online is the quickest, easiest way to donate to this event, buy chance drawing tickets for Paris or place an ad in the event program! Simply register by entering your name, contact information, and payment method. Registering online will also help us provide you with a speedy check in and checkout at the event.

In lieu of tickets, we will keep a list of attendees at the door. All guests will check in at the Registration Table on the night of the event. Don’t forget to bring your smartphone with you!

A huge shout out and thank you to our amazing sponsors who have already come on board to support this event and spread the word: TracyLocke, Stop & Shop, Vinyl Cafe, Cruise & World Travel, WEBE 108, Nosal Builders, and WTNH Channel 8!

Be a Rock Star – purchase your tickets or register now then get started putting together your Rock-Star Chic Party Outfit!

Remember – a portion of your ticket is tax deductible as we are a 501c3. If you are considering making a night of it and having dinner and drinks elsewhere then attending the concert consider purchasing a VIP ticket for $250 which includes dinner, top shelf drinks all night, admission to the entire exciting program with special guests and live performances, the live auction, and a concert ticket as well as a $100 tax deduction to a great cause that may help save your life or someone you love!

Buy Tickets Here! or go straight to link to Place An Ad In Event Program!

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Summer Amnesia…

48 96 hours ago (it’s taken me awhile to write this)…

I was in Martha’s Vineyard sipping on a cold, dry Chardonnay, absorbed in a beautiful book (The Bright Hour by Nina Riggs – which I highly recommend – 39 year old mother of 2 boys who just died of metastatic breast cancer – great great great granddaughter of Ralph Waldo Emerson), listening to the birds chatter and chirp around me as I lounged on a comfy chaise on the hillside at the magical Outermost Inn run by Hugh and Jeanie Taylor. I was soaking up the scenery of what can only be described as a little slice of heaven and casually chatting with the hubs about the fascinating gender roles of the Osprey family of five in their nest on a perch in front of us (and yes – I am quite the sexy conversationalist, thank god I’m already married is all I can say!).

While I was busy doing all that nothing, Tom was obsessing over trying to capture the trifecta of “baseball team birds” in one shot on his iPhone (Oriel, Bluejay and Cardinal) as they were all hopping and flying around right in front of us amongst the bevy of birdhouses the Taylor’s set up for their feathered friends. You get the picture – we were seriously relaxed, unplugged, chillin’ like villains. If this is what you are in the market for – the Outermost Inn is the place to do it. Hugh and Jeannie, Allie and the team are the coolest, most relaxed and lovely hosts. What his brother James Taylor has for talent in singing, Hugh has in spades in hospitality and craftsmanship. There is really nothing like this place. Our friends Suzanne and Dave have been coming here for 10 years and I could tell by the way they described it that it was something special. They have the most incredible food, scenery, company and such a magical atmosphere that when I walked into the breakfast room on Sunday – which was our anniversary, our wedding song started playing. Seriously. Out of nowhere. No one knew or had requested this. Tom was still back in the room and I ran to get him to come down and witness it. It’s just that kind of a place where weird, cool stuff like that happens. The kind of place where Hugh says “Just take my car if you feel like going out” and where Jeannie puts candles in your sorbet while Hugh whistles Happy Anniversary to you over their homemade pancake breakfast.

When we had our fill of bird watching, playing the oh so addictive “try to get the ring on the hook” game on the porch, and general lollygagging, we went for a breathtaking stroll down to the water and past the amazing clay cliffs this area of the Vineyard is known for. Thank god someone had warned us about the nude beach we would encounter along this hike – because without any sign or delineation, I literally almost tripped over an elderly woman lying face down butt-naked on a barely noticeable towel. Thinking she had washed up with the tide, I was about 2 seconds away from flipping her over and performing mouth to mouth when I remembered!

So, like I said – 96 hours ago I was doing this…

and then having lobster rolls for lunch while looking out at this…

and then I came home to one kid with a 101 degree fever, the other looking like a leper with poison ivy all over his face, a husband leaving town again, a dog who is pissed at me and won’t even look in my general direction, and what felt like a 200 degree day while I hosted the entire second grade class at my house. I was so shell-shocked by my re-entry from paradise, that I didn’t even react when 15 little eight year old boys were wrecking havoc in the boat at the party. I just kept thinking, “Hmm, that doesn’t look like a very good idea, but it’s also not the worst thing they could be doing.” boys

No wonder I now feel like this…

So, we look forward to it all year and then it takes but a nanosecond to remember that what comes right alongside all that sunshine and white wine are … crazy kids who’ve been pent up in school for 180 days and whom you now need to deal with 24/7, sweltering heat, summer viruses, and rash roulette! Yay summer, you’re here. I forgot how much fun you are.

But…The Cancer Couch has the best solution to beat the heat, keep those crazy kids outta your hair and entertained, and … help save lives and do something good while you kick off this festive summer season. Of course I’m referring to The Last Day Of School Scoops Challenge! The kids and parents of Cheshire CT – led by my tireless sis Viv, Susan and their rock star Cheshire friends – are getting ready to chow down tomorrow and I will be there to emcee and cheer them on. It is their first year hosting this event and they have already raised over $26,000 and going! AMAZING! THANK YOU CHESHIRE AND especially Magic Mikes Ice Cream Show Down Team and the First Grade Ice Cream Lovers and Cancer Crushers who have each already raised over 2500! I will let you know you pulls ahead as the final winner for highest fundraiser! Thank you Sweet Claude’s and Stephanie for sponsoring!

And the Fairfield Teams – led by my unstoppable sis Paula, Vicki and the incredible volunteer team of Kyla, Stephanie, Andrea, Sarah, Mary, Stacey, Tricia, Nicole, Nicole, Danielle, Maura, & Mary Frances – are bringing it also – getting ready for their Scoops Challenge Friday! The Beyonces, The Final Fours, and The Chow Hounds are all neck and neck for first place…who will pull it off? My daughter’s, my son’s, or my nephew’s team? Thank you Saugatuck Sweets and Al for sponsoring!

Remember – this is SO easy to host in your town and we will honor someone you love or you with a grant in your name for metastatic breast cancer patients in financial need at your local cancer center with 10% of the proceeds. We send you everything you need to do this and Ford Warriors In Pink has generously provided banners for these events so please consider doing this next year, any time this summer, or when the mood strikes you!

Stay tuned for the exciting results and until then, stay cool …

 

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  • limo

Free Limo Ride for 10?!

As Bruno Mars says, Julio…Get The Stretch! Limo that is…

We are so thrilled to have Rudy’s Executive Transportation As An Official Sponsor of The Scoops Challenge! They are graciously donating a 10 person limo for the Top Fundraising team and the Top Overall Scoops Eaten Winners to go to Rock N Jump at a mutually agreed upon time and date!! And you thought eating as much ice cream as you can with your pals on the last day of school with me making jokes over a mic the whole time couldn’t be any more fun?!…

limo

Have your kids get in a team of 4 – they each need to raise $50 to participate, make a name, pick your flavor, and sign up through our home page of www.thecancercouch.com! This week is the last week to sign up for the Fairfield Scoops Challenge and the Cheshire one is closed! Don’t miss out on this fun easy way to make a HUGE difference and save lives!

You don’t have to eat to compete either – you can just fundraise or donate!! And come watch this hysterical event!

 

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  • radioactive

Radioactive Reb…

It’s interesting how you notice different things at different times in your life based on how overwhelmed you are when you see them. For example, I CAN NOT believe that I missed the potential humor in this sign during any of my previous PET scans:

radioactive

During that nanosecond before my goofy, immature brain read and processed the words “Nuclear Medicine Patients Only” – I just saw HOT RESTROOM and my crazy brain conjured up two potential scenarios that were WAY better than my actual reality.

1. Was this some kind of amazing secret sauna/restroom where you could – I don’t know – detox while you pee? or…

2. OMG was this bathroom where only the HOTTEST of the HOTTIES were allowed to go? Should I be SUPER flattered that I was being led here – and if so what could possibly await me? Floor, wall and ceiling mirrors to get a good look at your gorgeous self? A bunch of great-looking people hanging out analyzing how well their jeans fit? Someone administering botox? Cocktails and bonbons?!  The possibilities were endless… my one-woman cancer induced stand up routine in my head does a great job of distracting me from the unpleasantness of all the hospitals, IV lines, and the reality of why I am actually relegated to this “hot” bathroom: To undergo a PET scan to see if and where the cancer has spread.

Alas, as the sign suggests, to any sane person, this is where you are made to pee when you are radioactive from the injection you receive before a PET scan. You also get a nifty little card that tells police officers and TSA agents whats up in case your radioactive self sets off their radar. Interesting way to get out of a speeding ticket amiright? It also occurred to me that although my nickname, in certain circles, is “Hot Reb” based on an old inside joke – I could really get used to Radioactive RebDefinitely an upgrade.

But, despite all the “fun” I was having at the expense of this unsuspecting sign and the ridiculousness of possibly setting off random radar detectors for the next 48 hours, these PET scans are actually F-ing brutal. You only get these if there is a pretty good chance that you have cancer that has spread or has high potential to do so since your last scan. Usually, these are reserved for patients whose cancer has already metastasized – but because my cancer was originally thought to be Stage 4 and the local metastasis was so aggressive and extensive – I get the pleasure of going through this crazy-making process too. As any cancer patient knows, your life hangs in the balance of these scans. Not that it’s much better for patients with earlier stage cancer who don’t get PET scans but rather have to sweat it out worrying that every headache or cough may mean their cancer has spread. But for those of us who do get PET scans – SCANXIETY is the worrying that goes on for hours, days, or weeks before the PET and then after waiting for the results.

This was a long one because they had trouble getting an IV into my chemo ravaged veins on my one arm that can be used (without lymphadema) so I was there for several hours and pretty wiped out from the fasting, needle poking, and anxiety by the time I arrived home. However, the scene I walked into at my house was the panacea (understandably, no photo evidence was allowed) but picture this… my eight year old son, nephew, and six year old sassy niece were hiding in my closet dressed head to toe in my highest heels, I’m talking five inch pink stilettos, ALL of my jewelry (my nephew had on 11 gigantic cocktail rings), my niece had helped herself to my beauty bag and did a full makeover complete with mascara and red lipstick, and the piece de resistance was the black, red and lace bras they each donned OVER their Catholic school uniforms. Oh My God. That’s one for the school catalogue! It was hysterical – I gave them a few more bras and even some thongs to add to their collection. Then Luca and I both realized it just got weird and he’d probably need a few years of therapy after this – so he bailed and they moved on to the trampoline. But, at that moment it was just exactly what I needed – and the perfect reminder of what I am trying so hard to live for… priceless moments like that.

Anyway, for all my MBC friends – please know I’m thinking of you on your PET days when I am aware of them – I know these are so much harder for you and for some – bad news could dictate how many weeks or months you have left – not years. I feel scanxiety for all of you. I hope the next time you have a PET and are sent to the “hot bathroom” – this gives you a little chuckle and at least a momentary distraction – and most of all I hope for good news and that you have the equivalent of some young hooligans waiting for you at home ruining all your best stuff.

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  • Judy and Joy Twins

Meet the Twins…

Judy and Joy Twins

Judy and Joy! They are identical twins and Food Network challenge-winners. They may look alike, but they have two very different approaches to cooking/baking and really……just about anything!

Oh my gosh, are these ladies gorgeous and adorable or what?! Trust me, they are. And they are every bit as bubbly and beautiful in person. Although I had been home recovering from a recent surgery when we met, a friend of mine asked me to pop into a meeting she was having with these lovelies. She thought The Cancer Couch and the twins should connect. She was right!

I’m so glad she got us together because we hit it off from word one. I love meeting “patients with a purpose” and feature them on this blog and website under “Interviews.” When people find a new mission or purpose in life after a cancer diagnosis, it adds so much positivity to the world – which we desperately need to balance out all the horrific negative that cancer causes. Judy and Joy are doing just that! Judy is a breast cancer survivor and her sister Joy has been by her side every moment.

After getting through treatment, they decided to use their skills cooking and connecting to help others eat their way to a healthier lifestyle. They are on a mission to change the way families eat – one healthy recipe at a time! They had the brilliant idea to teach people how to cook their traditional family recipes … but with a healthy twist. While Joy will teach the traditional way to cook these recipes, Judy teaches you how to make the same thing just…better for you!

As Dr. Oz so very perfectly described them, “the twins are in the business of making your family favorites a bit healthier!”

The twins have a cooking series and a weekly live stream on HooplaHa Only Good News http://www.hooplaha.com/ every Wednesday at 12 noon. They would love everyone to join them and share in whatever it is they are cooking or chatting about over a big “cuppa” coffee! They are as likable and as easy to talk to as those big smiles and expressive eyes suggest!

I talked their four collective ears off about my crazy cancer story for a half hour before hobbling away in pain looking like Egor, and they still followed up with me the next day concerned with how I was feeling and wanting to connect! I love these ladies and look forward to collaboration in the future!

Watch their series that is featured on Hooplaha Only Good News every Wednesday at noon!

Check out an episode from their show: https://youtu.be/Jq7vCN2rkyc

 

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  • sadako

I Just Got The Best Gift Ever…

I am speechless. Not only do I not have the words to speak about the gift I just received, I almost can’t even describe my feelings in writing. However, it is too special, too sweet, and too incredible not to share this story with as many people as I can. This stuff doesn’t just happen everyday and when something good and wonderful occurs we need to pause and honor it. So here goes…

I work on the foundation, go to doctor appointments, and write while my kids are at school. I cram as many conference calls and meetings into those short 6 hours as I possibly can everyday so that I can be available to do snacks, carpools, homework, dinner, yell at my kids, break up fights – the normal after school drill. I often take calls while walking to the local post office to collect foundation related mail so I can multi-task (work-out, get mail, and conduct necessary business over the phone). I am nothing if not efficient 🙂 !

Well, today I headed off on my usual outing to the foundation PO Box – which takes me on a scenic walk past the harbor and historical homes of Southport, CT. This route is full of hills and I work up quite a glistening sweat as I puff along, regaining my power-walking endurance, still just two weeks cleared to exercise post my latest surgery.

I arrive at the Post Office with a large envelope in hand to mail, the keys to my PO Box, my iPhone attached to earbuds, and a notice to pick up a package. My spandex and t-shirt don’t have pockets – so I’m carrying all this – oh and my credit card – in my hot little hands. First I go to my box to check for mail – I am always pleasantly surprised and extremely overwhelmed that it is never empty and always filled with envelopes of donations from all over the world (thank you readers!!!!). Next, I get in line to wait for help to mail the envelope and retrieve my package. Not expecting anything, and having never received a package slip before in my PO Box, I had no idea what it could be. When my turn came – the package retrieval was the last part of my transaction to take place. WOW! Was I shocked when she pulled out a huge 2 foot by 2 foot square package with substantial weight and hoisted it up on the counter.

I grabbed it – along with the mail I’d just picked up, my phone, headphones, PO Box keys and credit card and went to leave. I was three steps toward the door when it occurred to me…uh oh, I walked here. 🙂 Oops! I decided to open the package right there in the vestibule and see if it was something I could wear, eat, or worst case – have them hold for me until I came back with a vehicle. It was none of the above. I did happen to notice who the box was from though. It was from Mary Godwin, the mother of my friend and hero – Beth Calabotta – whom you all know recently passed from metastatic breast cancer.

I assumed this was something related to the donations she has had going to The Cancer Couch in her honor – although I could not imagine what would be so large in this regard. What I saw when I ripped away the brown postal box was another sturdy box inside – the really nice classic kind of box with a matching lid in the most beautiful color of blue – a soft hue, gentle and warm yet not overpowering (kind of a lot like someone I used to know…). I lifted the lid slowly – my curiosity spiking as I had absolutely no idea what this could be…and this is what I saw

sadako  with this note written inside the book… beths note

It is 1000 pieces of paper folded into beautiful cranes. They spilled out of the box as I rifled in to grab the book with the note that was tucked inside. Oh. My. Beth. I can not believe she did this. I have never received anything so special and thoughtful and precious in my entire life. She is still giving. She is gone but she is still looking out for me, wishing me well, thinking of others. This is what she did. Brave, beautiful, strong, smart Beth.

No way was I leaving this here to retrieve later. I started to cry and decided I better get going before I made a scene. I put my random belongings inside the box, re-attached my earbuds, and started out for the hilly mile and a half walk back home. An interesting thing happened though. Although I am the furthest thing from a technology wiz, I do know how to operate the basic functions of my iPhone – including but not limited to – listening to music. I had been enjoying tunes in between calls on the walk there. Suddenly, I couldn’t hear the music. It looked like it was playing, the volume was up, but no sound.

I had tried to put the music back on as I left in an attempt to help me regain my composure and stop crying. However, I realized that maybe this is exactly the opposite of what I needed to and should be doing. Maybe Beth wanted me to feel everything, reflect on her journey and ours together. I imagined her folding all of these 1000 pieces of paper. Was she in pain when she did it? How long did it take her? When did she do this? I wondered and thought about Beth. I heard the birds, I thought some more, I cried. I felt. I faced how scary this disease is. I remembered that Beth was once Stage 3 like me. I take nothing, no day, no moment for granted. Although I often try to forget what I am facing. I didn’t today. I did not take the easy way out and distract myself with electronics and music – as I so often do. I just walked, and carried those cranes that were made especially for me with love and the most sincere wishes for health.

I looked quite silly carrying this beautiful present like a baby all the way home crying while I walked up and down those hills with this most precious possession in front of my chest. I didn’t care. I can not even imagine what I know Beth must have endured at the end of her life. She never complained, never stopped caring about this fight – even though she knew she wouldn’t be here to benefit from anything we were doing.

Thank you Beth, wherever you are. I want to sit and touch each and every one of these cranes and continue to honor you and your faith in me and this foundation.

The story of the wishes coming from someone who is ill who folds 1000 pieces of paper is told in the book that accompanied this box, Sadako by Eleanor Coerr and Ed Young. It is about a young Japanese girl who develops leukemia years later from the atomic bomb dropped on Hiroshima. There is a monument built for her in Peace park with the following dedication…

This is our cry, this is our prayer: Peace in the world.

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  • Scoops

THE SCOOPS CHALLENGE IS BACK!

Ice Cream Eating Contest

          Scoops

I scream, you scream, let’s all scream for… The Scoops Challenge! We are SO excited to announce that REGISTRATION is now open for the 2nd Annual Last Day of School Scoops Challenge!

What is the Scoops Challenge? I’m so glad you asked! It is one of The Cancer Couch Foundation’s Signature FUN Fundraising events. Our first one ever took place last year in Fairfield CT and raised over $21,000, attracted over 500 people to come out and watch, we all had a blast, and the ice cream store that donated their space and the ice cream never did so much business in their lives – it was a win for all!

So here’s the scoop on the scoops challenge: Teams of 4 kids raise a minimum of $200 per team to participate in a fun ice cream eating contest on the last day of school. Each team gets to let loose and each as much ice cream as they can in 3 minutes. Prizes are awarded for highest fundraising team and most scoops eaten in each age group. It’s super easy, super fun and for a super worthy and urgently needed cause – to fund research for metastatic breast cancer!

WE NEED YOU TO GET INVOLVED!

We have two challenges scheduled already in Fairfield, CT (June 16th 330-550) and Cheshire, CT (June 15th 11-1) and we hope that if you cannot participate in one of these, you will consider hosting one of your own! (Click here to learn how!) The supreme marketing duo of Paula and Vicki have made it SO easy with their step by step instructions that tell you exactly how to do it! We are also SO thrilled to have the support of the Ford Motor Company’s Warriors In Pink Program and their marketing and creative team this year  – who helped design this banner and will be sponsoring the banners at scoops challenges across the country!

In addition to feeling empowered by raising money for metastatic breast cancer, we will also thank you for being so awesome by starting a fund in your name (or a breast cancer patient you love) with 10% of the event proceeds going to your local breast cancer center. This will be set up as an angel fund for metastatic breast cancer patients in financial need and it will live on – on our donate page so that people can contribute anytime!

SO – either get your kids signed up in teams of 4…or don’t miss out on the fun if you can’t get to one of these – start your own! We will send you everything you need in a kit and are here to answer any questions!!

YOU CAN DO IT!!!

Together, we can LICK metastatic breast cancer!

 

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  • bliss shared

Share some bliss with BLISS SHARED!

bliss shared

Share some bliss in the world by supporting this amazing new company and concept called Bliss Shared. I am going to start this post with a request, and instructions, for how you can do exactly that – right now – so if you fall asleep drooling over your computer reading this, lose interest, or just plain find something better to do… you will at least see this important request for you to do your good deed for the day:

PLEASE TAKE ONE MINUTE TO MAKE A HUGE IMPACT BY VOTING ON THE FOLLOWING LINK:

A Community Thrives!

Renee SpeersThis is my fantastic friend, Renee Speers. She is Founder and Chief Giving Officer of Bliss Shared, a company that produces luxurious spa socks. However, not only are these literally THE MOST COMFORTABLE SOCKS you will ever wear (they feel like silk and satin and someone massaging your feet), for every pair purchased – a pair is given away to someone in need (like Tom’s shoe company)! As if that wasn’t amazing enough and just such a cool way to give something back to those in need, she is spreading the love and help WAY beyond that. This year, Renee is launching her “Colors for a Cause Campaign” and along with other amazing charities such as our pals at Alex’s Lemonade Stand, The Cancer Couch Foundation has been selected as one of the causes! In addition to donating socks (in our month these will go to metastatic breast cancer patients in need through our Angel funds all over the US), Bliss Shared will also be making a $5 donation to The Cancer Couch for each pair sold. Our socks will launch in October, but Renee has applied to receive “A Community Thrives” grant from the Gannett organization. If selected to receive the $100,000 grant, each of the charities Renee will be working with this year will receive close to $15,000 in addition to the money donated by Bliss Shared. You can help raise awareness and needed funds for our metastatic breast cancer research by simply voting at the link above!

You can vote every day through May 12 but just as importantly, please post this link to your social channels and help us spread the word. So easy, and you will feel so good to know you have been a part of this fundraising! And stay tuned, I will let you know as soon as our Cancer Couch socks are available!

Thank you Renee for being a force of good in the world and spreading your bliss- we all need more of that! Please vote!!

 

    socks