I'm a cowgirl, without a horse. The Cowgirl vs Cancer retreat that I had planned to be on, right now, and tell you all about in this edition - did not happen for me. The clinical trial I am in, which has been doing a great job of reducing my cancer, is also pummeling my immune system. My doc - who fully believes that cancer patients should live life to the fullest every chance we get - asked me to not travel. In an unprecedented act of compliance, I listened.
Anyone who knows me, knows I truly love to be active, write, travel, and generally squeeze every last bit of fun I can out of life. So, being "grounded" and slowed down is a challenge for me to say the least. It's not like having the flu, or something that will pass, and you can get back to "normal." Having a terminal illness means, at the time in your life that you most desperately do not want to miss a single soccer game, party, or carpool, you often have to do just that - sit on the sidelines.
I don't typically throw myself pity parties, but I will admit that I did have a good ol' cry about missing this long awaited yoga/horse retreat in Montana and meeting the other amazing cancer cowgirls and hosts with whom I'd been corresponding for months. Every time the kids stressed me out, a needle at the hospital was particularly painful, or I felt overwhelmed by foundation tasks - I thought of this trip and blissed out. "Oh my god, I can not wait for Montana," I kept repeating to myself, and anyone else that would listen. I wanted, needed, an escape from the reality of living day to day with this disease and all that goes with it. Not going was a huge blow.
However, something came to mind, through my tears, while unpacking my still neatly folded yoga pants and riding jeans...Montana, was never the solution. I wanted it, sure, but I didn't need it. Of course, it would have been ah-mazing to get pampered, ride horses and be immersed in that beautiful scenery. But, I realized I had fallen back into the same patterns I had BTC (Before The Cancer). I had found my center - many times actually. But alas, I had lost it and become misaligned. It can happen so easily - we don't even notice it. That is until you find yourself sobbing like a four-year-old into some stirrups over a trip you had to miss. I was doing it again. I was "manufacturing" my life, instead of just living it. If I have learned anything from my experiences over the past (almost) three years - it is that all we have, for sure, is right now right in front of us. It is our choice how we choose to spend that time. We can't always choose where we are, or what we are doing - but we can ALWAYS choose how to think and, therefore, how to feel about it. We don't need a trip, a car, a house, a vacation, a raise, good weather, or even another person, to change that. Someday I will get to be in Montana, but for now - I will be grateful just to be able to "be." That is a simple, beautiful thing and that, I can do.
Speaking of simple, beautiful things...I went to my post office box today for the foundation mail, and found a beautiful, lavender scented owl eye pillow with a note. It came from an amazing, fellow MBC patient across the country - named Becky Hall - whom I have featured here previously with her incredible movie Bare, based on her life. I reached out to her a few months ago, knowing she hadn't been doing so well and wanting to send her some love. She hadn't been up to responding at the time. Then, last week, she thought of me - and sent this ...
Beautiful, simple, and it came just when I needed the boost she said my email had brought her all those weeks ago. See, I didn't need to go all the way to Montana to find peace and beauty after all. Don't get me wrong, I fully intend to go next year, as the lovely Margaret at Big Sky Yoga Retreats has kindly assured me I will, and I know I'll find the peace and beauty I sought there. However, unless I find it here, within me, first - in Montana is where it will remain.
There have been so many amazing and supportive events going on involving The Cancer Couch, that I almost don't know where to start. The Mombie movement seems like a great place. It all started with this one very creative woman, Terry Davis, who lives in my town. She got a bunch of women together two Halloweens ago, to learn a choreographed dance routine to Michael Jackson's,Thriller. They dressed up like zombies, performed this "flash mob" dance to the delight of their kids, friends and neighbors...and that was it - just for fun. Or so they thought. Well, the video went viral and they knew something incredible had begun...
This year, Terry and her crew got to thinking they could do something powerful and good with the attention the video garnered. One of the dancers was our own Board member, Caryn Sullivan, of Pretty Wellness and a fellow MBC patient. The group had a heightened awareness of our plight to increase MBC funding.
They graciously decided to link TCCF website to the end of their video and direct people to donate once they finished viewing. To date, they have raised $14,469 - which will be doubled and rounded up (by an anonymous donor) to $30k. At their request, to keep some of the donations in our own community - we put ten percent into our Beth Davis fund for metastatic breast cancer patients in financial need at the Norma Pfriem Breast Center in town. Thank you #FairfieldMombies - you incredible, adventurous, cool, kind women!
But... this movement didn't stop there. In fact, it may actually just be getting started ... My sis Viv, and her unbelievably smart, passionate, and generous mom friends in Cheshire, CT hopped on board the Mombie Movement and just completed an unbelievably creative Mombie video themselves. This time, the holiday theme was love and Valentines day. They have brought in a whopping $6080 to date. That will also be rounded up and doubled - to make a total of 14K going straight to research from their efforts. Thank you so much ladies. Click here to see both videos and donate through their creative cause! (Terry Davis - creator of Fairfield Mombies in pic to left below; Maricele Riemann, Catherine Takizawa, Vivian Ciampi (my sis) & Neeta Vatti- the creators of the #CheshireMombies are in the photo on the right! You have to watch these videos - to see the amazing, creative performances these incredible mom dance crews, and volunteer video and dance professionals, pulled off! THANK YOU SO MUCH! They encourage you to start a Mombie movement near you for TCCF!
People are always so generous in asking how I am doing, so a quick update here on my health status: I am still taking part in a Phase Two clinical trial at MSKCC. It involves taking a combination of the drugs Ibrance and Casodex orally. It is really tolerable. It is working - as of my last scans - the cancer was stable and some areas receding. Cause to celebrate!
A few announcements: Please consider hosting a Scoops Challenge! It is a great way to get your kids involved and empowered. Our goal is to have one taking place in all 50 states...and beyond! Remember, we will donate 10% of the proceeds from your event to set up an angel fund in your name or a breast cancer patient in your community to help local mbc patients in financial need. So, please consider hosting a "Last day/or week/or month of school Ice Cream Scoops Challenge" in your community! If you want to learn more about hosting a scoops challenge at a local ice scream store in your town, please contact Paula Cunningham at email@example.com or Vicki Swanson at firstname.lastname@example.org, or Vivian Ciampi email@example.com if your event will be off site at a park or somewhere (not at an ice cream store)! They will set you up with everything you need to do this! Perfect feel good way to kick off summer!
And finally, I'm going to go ahead and file this one under the category, "Oh the terminally ill...we think we can do anything!" Because that seems to be the delusional vantage point from which I was operating when I decided to try my hand, er, mouth - at stand up comedy. It is so hard but THE BEST distraction from cancer. I am really hooked on trying to make people laugh and am having so much fun just writing and laughing at the jokes myself.
If you are so inclined, and want to either laugh at or with me, and live anywhere near the NYC area, I am lucky enough to have the chance to perform, this Thursday evening March 8th, at 630pm, at the iconic New York Comedy Club. Click here for tickets and ... there is a bar next door where we can catch up after!
For those of you who missed my debut comedy shows in CT, and a huge thank you to those who came from all over (Rochester wins!), and liked it enough to come back (New material!) I am headlining at The Fairfield Comedy Club on April 6th at 9pm. Use Promo code REBECCA for a discount and Click here for tickets. Please come out and support local comedy and this amazing comedy club on their first Friday night show!!
A huge thank you to Tim Kerr from albatrosspros.com for the video! And the fabulous Lisa Garcia for the photography! Here is some footage of the debut night, courtesy of Photography by Lisa Garcia...
(below - Joe and I in our sparkly shoes; Tim; and that's me in action...)
“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:
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.
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.
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.”
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 …
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:
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.
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 Reb. Definitely 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.