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  • dana-farber

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

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  • Renee

Hurray Renee!

When I was diagnosed with breast cancer in September 2015, so many people told me about their friend, sister, cousin, aunt, mother, neighbor, etc. who also had breast cancer. With the odds that 1 in 8 women will develop this disease, and in Fairfield County even higher, it’s no surprise that everyone knows someone with breast cancer. It actually feels like an epidemic! But, one woman in particular kept coming up in conversation – we had the same pilates instructor and a publicist friend had become aware of her story from her news reports. I was drowning in treatments, surgeries and getting the foundation going so I never reached out. Finally, before this last slice and dice surgery of mine – I did. I am so happy to introduce this courageous young woman, who shared her story on air – and learned about her own diagnosis the day she was filming a segment on the topic: Renee Chmiel.

Renee

As a reporter at News 8 Renee is used to sharing other people’s stories, but she never expected she’d end up sharing her own. That story began in September 2015 when she found a lump in her left breast. Though she wasn’t someone who usually went to the doctor, something told her to have it checked out. At the time she was just 29 years old. The doctor told her not to worry. He said, “you’re young, it’s probably just a cyst. I’m sure it’s fine.”

She was sent for an ultrasound anyway, just in case, and then a biopsy. The day before the appointment she climbed Mt. Washington in New Hampshire, nearly getting trampled by a moose on the way down! She’d always been into health and fitness and never imagined she’d become a breast cancer patient before age 30, but that’s what happened less than a week later.

Ironically, Renee was working on a story about breast cancer at work on the day she was diagnosed. It was October – Breast Cancer Awareness Month. As she did her interviews and wrote her story she was waiting for her phone to ring to see if she had the disease herself. That call came that Friday afternoon: a positive diagnosis, a flood of information about doctors, and advice from the nurse to enjoy her weekend.
The weeks that followed were a whirlwind of doctor’s appointments, tests and decisions that had to be made. Lumpectomy or mastectomy? Would she be able to go on her planned trip to Iceland? Where did the disease come from? Exploring Iceland was a welcome respite less than a month before her surgery. At that time she was trying to make another decision: should she tell her story? Ultimately she knew she had to. If an otherwise healthy 29-year-old who was negative for both BRCA genes and had no family history could get the disease, it could happen to others. She never thought she had to worry about breast cancer, but now she had it. She wanted to let others know that it could happen.
Renee’s job as a reporter gave her a unique way of getting her story and message of early detection out. Her friend and colleague, health reporter Jocelyn Maminta, had offered to tell her story. Renee was now ready, though it would be one of the scariest things she’d ever done. Renee had her lumpectomy in December 2015. Jocelyn interviewed her at a doctor appointment the day before and again the day after her surgery as she recovered. That night she got some good news from her surgeon: the cancer was not in her lymph nodes.
Renee’s story aired on the 5 p.m. news on her first day back at work after her surgery. Watching it at home for the first time as it aired was surreal, scary, yet in a way, it gave her hope. She wanted other women – especially young women – to see it and know they had to be vigilant.
Her journey was not over yet, however. Further post-surgery testing would reveal her risk for relapse was a bit higher than she’d expected. The next month was the most difficult. She had to decide on the best course of treatment – and choose the oncologist who would manage it. The first decision: chemotherapy. Two of the doctors she saw recommended it because of her age. Three others were less adamant she go through with it. Ultimately, Renee decided against it.
She began radiation at Smilow Cancer Hospital in February 2016. She went every day after work, trying to keep her spirits and her energy high. She leaned on friends, tried acupuncture, exercised and, for the first time, wrote in a journal. After six weeks of treatment, she “graduated” from radiation on April Fool’s Day. A month later she began the third and final part of her treatment. All of the doctors she saw had unanimously told her she needed to go forward with hormone therapy. Renee’s tumor was fueled by estrogen, so to prevent a relapse she had to lower her estrogen levels to reduce her risk. She is now in menopause, and will be until she is 35 years old.
Renee celebrated her 30th birthday and her remission in July 2016 by visiting Peru with her best friend. She now speaks at breast cancer fundraisers and tries to spread her message of awareness and early detection to as many people as possible. It’s something that just might have saved her life.

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  • Twisted Pink

Twisted Pink…

The losses to the MBC community, of Champagne Joy and Beth Calabotta, this week have broken my heart. I’m in a bit of shock over it honestly. But, when I get sad or even cry about it – I am immediately aware of how much they both would have hated that. What they would have loved is for me to continue to raise money and awareness for MBC research and to keep honoring and celebrating others who are doing the same.

I was so touched by the outpouring of support and comments from so many of you about Beth and Champagne. Thank you for taking the time to share your respect for them and your thoughts with me. I am honored to continue doing the work they both started. Unfortunately, I can not travel to DC next week as hoped due to my recovery from recent surgery. However, I am used to fighting this disease from my couch and that is exactly what I will do for now.

You know how when you meet someone new, you immediately know when you are connecting with another person who is generous and like-minded and out to promote you and your goals as much as their own? Laws of attraction have a way of bringing these kind of people into my life these days and I am so honored to introduce you to one of them today.

Please Meet Caroline Johnson, Founder of Twisted Pink…

Twisted Pink

Twisted Pink, is a non-profit organization based in Louisville, KY whose mission is to cure breast cancer by funding metastatic breast cancer research while exposing the hidden statistics about the disease.

Caroline was 39 years young in June 2013 when diagnosed with stage III ER+ breast cancer. She became an advocate for research after her youngest son was born with an extremely rare chromosome deletion in 2005.  This condition was the cause of her son being born deaf/blind.  He would later experience developmental delays and Epilepsy.

Caroline started Twisted Pink in June 2014 after completing chemotherapy, radiation and several surgeries.  She saw a need to do something for the men and women who were being left behind the pink ribbon!

When diagnosed with breast cancer a month prior to her birthday, Caroline’s friends honored her by gifting her a necklace with the letter “c” engraved on the disc. Caroline’s friends purchased identical necklaces in her honor and wore them during her year of treatment as support. The letter “c” was supposed to signify Caroline’s name but quickly became a symbol for Christ, who Caroline attributes to helping her get through her treatment and who continues to be the inspiration of Twisted Pink and Caroline’s work as an advocate.

Twisted Pink has raised over $420,000 for metastatic breast cancer research since opening in June 2014. WOW! In 2017 Twisted Pink will focus on collaboration with organizations sharing similar missions to change the outcome for people facing a metastatic breast cancer diagnosis.

~~~~~~~~~

I am so honored to announce that Caroline and I, and Lara MacGregor from Hope Scarves, will be joining forces to form The MBC Consortium, and pooling resources to move the needle toward better MBC treatment faster, together! Stay Tuned!

 

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  • birds

Goodbye Beth, Goodbye Champagne.

We know that a woman dies every 13 minutes from metastatic breast cancer. As I become more and more immersed in the MBC community, I am starting to know more and more of those women. It is so hard. We lost many amazing women this week, this day, this hour. Two were especially close to my heart. Please take a moment with me to honor Beth and Champagne and send love and comfort to their families and loved ones …

Beth Calabotta

Beth Calabotta

If you are a regular Cancer Couch reader then you know Beth Calabotta and you know how much she means to me. Beth died this evening at 5pm. Her husband Dave tells me she had a smile on her face. I believe that because she was the most positive, clear-headed person I have ever known. Even though she fought death and made plans upon plans until recently, I am quite sure that once she realized the end was near, she found acceptance and peace in it. I am also sure that she is now free to spread her endless love and goodwill throughout the universe, no longer bound by her cancer-ridden body. I am so glad she is no longer suffering. I feel so blessed to have known her in my life. Our last contact was by text a few days ago. I asked if there was anything in the world I could do for her. She replied by saying, “I should be asking that of you.” I think that says it all. I love you Beth and feel a huge hole in my heart with your passing. Please watch over us and help us find a cure for MBC. I know that you wanted that more than anything – to prevent others from going through this. I will work in your honor. I love you.

 

champagne joyThis is Champagne Joy, on the far left, with the funky hat – at her groundbreaking fashion show with AnaOno during NY Fashion Week this year. I am so glad that she got to see this happen. I am so thankful that she and I became friends this year as she received her cancer treatment just a few blocks away from my house. Sometimes I would bring her green juice while she sat and had chemo. Sometimes we’d meet at a healthy lunch spot. Always, we would talk fast and energetically about all the great things we dreamed of doing to fight for those with MBC. Always. She was so smart, so savvy, so clear, passionate, creative and articulate. I always learned so much from her. We always laughed and had fun. With Champagne, you instantly feel like you’ve known her your whole life and can talk about anything. We always ended with a plan. We had a plan this week. We were making it the night before she died. She was so generous. Knowing I’m just out of surgery, she wanted to come to my house with green juices so we could hang out. On her morphine, coming from treatment, bringing ME juices. Unreal. Generous, passionate, full of light and love and humor til the very end. I love you Champagne. The stars will certainly be sparkling brighter from now on with you among them. You lit up every room you ever entered.

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  • white house

Got To Get Political…

Political I Gotta Get (this is a line from an Arrested Development song I love called Give A Man A Fish) but it’s true. Now more than ever – when there are so many changes being made in our political system – no matter what side of the aisle you fall on – we all need to get involved with politics and have our voices heard.

white house

I just had a wonderful call with Beth Fairchild and Sonja Negley of Metavivor.  This is a fantastic organization that also raises money to fund metastatic breast cancer research (and gives 100%) and they push for legislative changes for metastatic cancers of all kinds. The Cancer Couch is so honored to join them in their efforts to fight for change in legislation on issues that impact all cancer patients and anyone with family members with cancer (I think that includes all of us!).

I will be joining Metavivor next week (if my surgeon gives me his blessings to travel) in Washington DC on April 4th and 5th to advocate for additional metastatic cancer research funding, the right to try treatment or therapy for those at the end of their life who wish to try an experimental treatment at their own risk, and to advocate for responsible health care reform. This includes – to name a few issues: no pre-existing conditions excluding patients from obtaining healthcare and no lifetime caps on coverage – which for metastatic cancer patients who will be in treatment for the rest of their lives would be devastating.

If you can’t attend this event but want to help please register on-line here and select no. You will still be sent information on how to write to your congressperson. Or you can reach out to sonya@metavivor.org and she will send you a letter to make it easier.

Thank you Metavivor for all you do to push for change and finance research for metastatic breast cancer! Let’s all work together to help them do this work that impacts all of us.

 

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  • rapper microphone

Reb The Rapper Returns

rapper microphone

I had my FINAL (I think!) surgery yesterday. Actually, as I’m writing this it just occurred to me that my surgeon, Dr. Greenspun, said I might lose my belly button in this one. If I did he would do one more procedure to make a new one. So I literally just looked down at my naval region out of curiosity to see if it’s still there, and I can’t tell! It’s covered under some pretty heavy wound dressing and tape so the mystery remains…Ah, the joys of cancer.

I’ve had so many body parts taken off, rearranged, and put back on – what does a belly button really matter at this point? It has served its purpose, I can let it go. I’ll just look like a lego figurine from now on. I think even Barbie dolls have belly buttons, but I don’t think the Lego people do. Dr. G also promised me I wouldn’t be coming home with any drains on this surgery yet I have one coming out of my stomach! So liar, liar pants on fire doc! Did you think I wouldn’t notice that? 🙂 Seriously, I can not complain – he has done me such a serious solid moving all this stuff around and putting things back where they belong, getting so much scar tissue out of my abdomen that I no longer have the front butt I was sporting since last year. Dr. M fixed the hernia caused by all this, and Dr. G was even able to cut out a decent amount of scar tissue from my chest wall that has helped my lymphadema – a total bonus. These guys were busy!

But of course, I had the blast that I always have when I undergo surgery at Greenwich Hospital. I am telling you, the nurses are straight outta heaven. It is ridiculous. Actually it’s not just the nurses – the doctors, aides, custodians, volunteers, food service staff – each one is nicer than the next. It has sadly become my happy place. I am considering getting a 3rd breast attached just to have a reason to go back in there, it’s that good.

Add some feel good anesthesia to the mix and you get Rapping Reb back in action. I got to see all my friends from the recovery room (a.k.a. PACU) and they gave me a VIP escort back to my room following recovery – I felt like a rockstar. Although they caused such a scene that everyone was seriously wondering who the HUGE celebrity was being wheeled onto the floor with this  entourage…Beyonce? Bono? … you can imagine their disappointment when they saw it was just little ol’ me. To make it worse, my PACU friends then started introducing me to the staff as “Reb, the famous rapper!” I could see the looks on all of their faces like, Um…yeah sure this middle-age white chic is a famous rapper, yup – and the Psych ward is on floor 3 if you want to just take her straight there. Well, I had to gain some street cred, so I busted out a rhyme on the spot about my new nurse Charity. It went a little something like this (supply beat box in your head as you read):

My post op nurse was Charity 

She gave me toast, we had a chat, we got some clarity.

This was the sweetest way to end my day

It is my final surgery so let’s say hurray!

Anyway, I’m home now recovering and I am quite the vision. The best way to describe the way I look is this: Imagine I was on the losing end of a prison fight where I was shanked multiple times, thrown on the floor and kicked, and basically got my arse handed to me by about 20 angry inmates. Something like that. When my sister asked my mom over the phone how many incisions I had, mimi responded “Oh my god about 100!” It looks worse than it is but I had a lot of things that needed to be repaired and moved around so it was like a 4 for one special with 2 surgeons (plastic and GI) both doing their thing.

I have been counting down the days to this surgery as I have felt like my life has been put on pause in many ways with all the disruptions of the multiple (10+) hospitalizations I’ve had over the last 18 months. I finally feel like I can move on in certain ways and at least stop living in crisis mode and just get back to…living. For as long as I have left I’m going to enjoy every sweet minute of it. I hope you’ll join me in doing so. Big smiles, lots of love, Happy Friday :)!

Drop the mic…

 

 

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  • Beth Calabotta

An Ode To Beth

Beth Calabotta

Beth Calabotta

I don’t know what to do so I’m doing this, I’m writing. I am consumed by that horrible, helpless feeling that comes when someone you love is suffering and there is nothing you can do to stop it. I can stand here from across the country and connect with other people in her life and let her know that we are praying for her, thinking of her, crying for her, loving her, and staying present for her as much as we possibly can at this difficult time. I want to honor my friend Beth and let her know how loved she is by so many people. I want her to know what an impact she has had on this horrible disease. She has educated so many about the realities of metastatic breast cancer. She has bravely shared her story, time, DNA, brilliant mind and so much more to help prevent others from suffering as she has. I want her to know what an impact she has had on me. Her fierce, unwavering determination and dedication to do as much as we can as fast as we can to eradicate MBC energizes me every step of the way in fighting for this cause. So many of her brilliant ideas have helped shaped how I think about the disease and how we need to research and fund it. Beth thinks big but then she takes the time to attend to details and to people. She has no ego, no stake in any of it. Beth has known for some time that she would not benefit from the research and advocacy she has done so much to advance. Yet, even in her darkest hours, her most painful moments, she is still churning out ideas, emails, phone calls to help prevent others from experiencing this suffering. She is one of those rare individuals who is not only beloved by the entire MBC community and beyond, but she is truly revered. She is universally respected and admired as well as loved – and that is no small thing.

I went swimming the other day at an indoor pool. I mean really swimming – like actual laps – not just wading my cankles in to cool off kind of swimming. I thought of Beth the whole time. I hadn’t swam laps in years, but my doctors keep recommending it because of the severe joint pain I have caused by the cancer meds. As I eased into the rhythmic breathing and movements of my limbs gliding through the soft water – it occurred to me how much this sport – that she loved so much – suited Beth. Swimming is a tough sport. You have to be strong. You have to work at it to build stamina. You have to be dedicated. You have to know how to stay afloat and move at the same time. You have to multi-task – breathe, move, rotate, kick, pull, flip, push and glide. It is silent and often solitary – although Beth formed an incredible camaraderie with her swimming pals with whom she has strong and unbreakable bonds. You have to think, or deliberately not think as there are few distractions. You have to be self-reliant, driven, disciplined and self-motivated. It is for people with strong minds, bodies and hearts. Someone like Beth.

I don’t know what to do, but I know that I want to let Beth know all of these things that I think about her. I want her husband Dave, and her parents and her family to know all of this and more, what so many others think about our beloved Beth Calabotta.

I asked a small group of people in the MBC community who know and love Beth as I do, to each give me a word to describe her. This is what I got back…

bold,

good,

caring,

bright,

a champion,

compassionate,

kind,

smart,

beautiful,

selfless,

intelligent,

friend,

determined,

altruistic, and

loved

Beth Calabotta believed in me and in The Cancer Couch from its infancy. She encouraged me, helped me, rallied around this foundation, and played a huge role in getting us where we are today and where we are going. Beth generously donated the funds from her annual Beth Calabotta Swim Challenge to The Cancer Couch. Planning is already underway for this year’s swim, not only in Illinois, but also here in CT  – my sister and her amazing crew in Cheshire are hosting a Beth Calabotta Swim Challenge in her honor. If you would like more information on hosting a swim challenge of your own for The Cancer Couch in Beth’s honor, or participating in one, contact carrie@wellnessdatasolutions.com or vmciampi@gmail.com. A portion of the proceeds from all the swim challenges will go back to the fund set up in Beth’s name at Blessing Hospital in Quincy, Illinois as an angel fund to help MBC patients in financial need. A brick is also being placed in the garden there in Beth’s honor.

Beth, you make me want to swim.

You make me want to never stop fighting for MBC funding and advocacy.

You make me want to be a better person.

Thank you for giving all of us a shining example of the very best a human being can be.

I love YOU to the moon and back my friend.