I have been in the habit of just putting out a monthly newsletter so as not to inundate you all with Cancer Couch news. However, this NEWS is just too good to wait on. Before I get into it though, above is a photo from The Cancer Beat - featured here (from left to right), the hysterical comedian and my friend and co-host Christine O'Leary, Dr. Sarat Chandarlapaty of Memorial Sloan Kettering Cancer Center, me (in the middle of my favorite smarty pants sandwich), and Dr. Nikhil Wagle of Dana-Farber Cancer Institute. This is from the absolutely incredible night of The 3rd Annual Cancer Beat which took place in Fairfield, CT on September 8th. The evening was a huge success in every way. It was so much fun from start to finish. We laughed, we cried, we danced, we loved, we LIVED. We honored my friend Beth Caldwell who died this past year from MBC leaving two young kids and a wonderful husband along with a powerful and astonishing legacy. She was one of the smartest, sweetest, most badass women I've ever met and one of the most impactful MBC advocates to date. She lit a fire in me from our first phone call that I could not help but take as a call to action to do something to help extend the lives of those struck with metastatic breast cancer. I did not know then that just three years after that first phone call that prompted me to dedicate my life to funding research for MBC treatment, my ENTIRE life would be riding on the chances of one experimental research trial working.
I announced in the room Saturday night that I had learned three weeks prior that my cancer had spread to my brain, bones, liver and adrenals. I shared this so people could understand the reality of how quickly stage 4 cancer can spread and how desperately you need something, anything, to work when it does. I found out, while I was in Brazil this summer, that I qualified for a trial precisely targeted to a certain mutation present in my tumors. This mutation wasn't there initially - when I was diagnosed three years ago - but thankfully and miraculously, it is now. I knew if it worked, it would be like hitting the genetic lottery. It just had to work.
I had four scans this past Thursday, 28 days into the new trial. I know we don't and can't always get what we want, but I hoped and prayed with everything I have that what I wanted and what I needed would be the same thing. This time, they were. My oncologist called me first thing Friday morning to share the amazing news that not one, but every single area of cancer was shrinking. In 28 days. Tonight I went on the patient portal to check my tumor markers from blood work done today. They are all back within normal limits. I am overwhelmed with gratitude that I could get yet another lease on life this late in the game when things looked so bleak just weeks ago. I know it is a trial and I know I continue to live month by month, scan by scan and I hate that there are thousands of people out there getting the opposite of this kind of news today. My heart breaks for every single one of them and for those we keep losing to this disease (one person every minute worldwide). I want nothing more than for this kind of medicine to be available to everyone. Please know, I am here fighting for you, fighting for me, fighting for all of us to have a better chance. This October, please consider making a donation to The Cancer Couch or any other foundation that focuses on metastasis. No one is cured from cancer until we are all cured. Research is vital.
Oh wait - the karma part! Well, before I got cancer and started this foundation - Tom and I always contributed to our favorite charity - Alex's Lemonade Stand Foundation run by Liz & Jay Scott (Alex's parents) with whom I grew up. Well, when Liz heard about my good news Friday, she shared the amazing fact that ALSF funded a study of the drug I am on, for kids, way back in the lab as it was just developing. Their funding of this study allowed for a significantly more robust data set and therefore got it moved on through the trial phases much faster (ultimately literally just in time for me to get on it exactly when I needed it!). I never would have imagined, sitting at the Lemon Ball all those years ago- cancer free at the time - potentially even donating money that may have gone to this - that my life would potentially be saved by something they were funding. AMAZING. We are all in this together. All of it. THANK YOU ALL so much for your help, support, love and extreme generosity at The Cancer Beat and all year to help fund the incredible work our researchers are doing.
A big thank you also goes out to G.Love & Special Sauce (Lead singer Garrett featured here) for putting on such a great show at The Cancer Beat and bringing so much heart, soul and great vibes to the event. Much love to you all. I can't say thank you enough to everyone involved! If you missed it, we missed you and hope you can join us next year!
Friends and followers of "The Cancer Couch" - how can I thank you enough for sticking with me through all this and continuing to follow my story and support this foundation that WE have built. Well, to start I am going to put out this newsletter monthly with ONLY GOOD NEWS. Call me a pollyanna (I'm so not) - but - I need some GOOD NEWS in my life and I bet you do too. That is not to say I ignore the bad, or the frustrating, or the sad. I don't. But I also don't want to live there. I use those feelings to learn from a situation - what I don't want or, I take action to improve and honor it. None of us know how much time we have left but let's just say - when you are diagnosed with an incurable cancer in the prime of your life - you can kind of see the numbers on the bus that is barreling towards you. So, I am choosing not to dwell in the negative but rather - to highlight, celebrate and spread - the good. Here is what's good this month...
Did you know that we have, collectively, with the help of our friends at Hope Scarves and Twisted Pink, put 1.7 million dollars DIRECTLY - with not a penny taken out - into the labs of the amazing, brilliant researchers at Dana-Farber (Dr. Nikhil Wagle) and Memorial Sloan Kettering - my home field (Dr. Sarat Chandarlapaty). AND...we have put thousands into Angel Funds to support those living with metastatic breast cancer (MBC) in financial need through the Beth Calabotta fund at the Blessings Health Center in Illinois and in my hometown of Fairfield, CT at the Norma Pfriem Center in honor of Beth Davis. BRAVA people BRAVA!!! YOU DID THIS! Everyone of you and every dollar you raised did this! Thank you! I may have had the idea but man...you guys ran with it!!! :) And...we are having FUN doing it! That's me up there doing STAND UP comedy!! Yes, I know - what the h%&^ was I thinking? Just because I can "stand up" doesn't mean I have nailed the other 50% of the "STAND UP COMEDIAN" gig. It is truly one of the hardest things I have ever done. My hat goes off to every hard-working comedian out there. Support stand up comedy and when you go to a show, please laugh your arse off - it's scary up there!! My generous friends at The Fairfield Comedy Club have offered to donate $5 of every ticket, to any show, to TCCF!!! So please check them out and use promo code CANCERCOUCH!!! You'll get a discount and we will get 5 bucks that will be matched to 10 and go straight to research!!
I used my burgeoning comedic skills to perform at a charity event last night at Gotham Comedy Club in NYC and I was so honored to receive an award from the wonderful non-profit organization started by an amazing firecracker of a woman, named Carri Rubinstein, called Thru My Eyes . They make legacy videos for people to have for their loved ones. Don't get me wrong: My clinical trial IS WORKING and I remain fully, potentially delusional but, FULLY optimistic that I will outlive these numbers by DECADES! However, I know the average life expectancy after recurrence is 18 months. I watch so many MBC friends fail and die - every week. So...I made one of these videos because I want my kids to have that and see me (random chin hairs and all) feeling vital and funny and well. Thank you Carri and the Thru My Eyes team for honoring me with a Spirit Award last night (some pics below of the event!).
In other good news...our end of school year scoops challenges are about to take off! Thanks to my sisters Paula and Vivian and our friend Vicki as well as so many other amazing people (Danielle, Lisa, Amanda, Sara, Jenny) who are running these this year (details to follow as well as sign up sheets!!!).
Ok the other thing that is good... our 3rd annual cancer beat tickets are going on sale shortly so SAVE THE DATE 9/8/2018 at The Warehouse in Fairfield, CT (at the metro north train station!) and we are thrilled to have the comedic talent of Christine O'Leary for our VIP program and G.Love & Special Sauce for our musical performers! We have sold out the past two years so please don't delay in getting your tickets to this fun event - this year's theme is Laugh, Live and G.Love! Wellness, humor and good vibes will abound.
Lastly...I'm getting a wee bit tired these days and the lesson I am learning from this is I need to take my cape off once in a while and ask for and receive help :). Not one of us can do it all. We are collaborative creatures by nature. So... here are a few asks: If your awesome self or your awesome company would like to be a sponsor of The Cancer Beat, or be involved with getting sponsors and donation items, please email me directly and I will give you a very specific and manageable job or sponsorship package with a million thousand thank yous, GREAT marketing, and even better karma! Shout out to Circle Hotel Fairfield, Wildfire Magazine, Vegalash and Tracy Locke - a few recent and recurring sponsors!
And, man there is so much great news - this is turning into a newsnovel - I AM GOING TO BE A REAL LIVE COWGIRL at the Cowgirls vs Cancer Big Sky yoga retreat for which I have been accepted in Montana! My next newsletter or newsnovel :) will have pics and tell you all about it!
Yeehaw and namaste.
I don’t know if I’ll ever be able to explain exactly what it was that made this past Friday night in the hospital so magical, but somehow I found myself having the absolute, ultimate, best time of my life – in a hospital bed, in the recovery room of Greenwich Hospital, immediately following an 8+ hour surgery. Were there drugs involved? Ok yes, of course there were. On my part, lots. I was loaded up with all kinds of anesthesia and pain meds coming off this lengthy procedure. However, this is most certainly not my first rodeo – I’ve had these drugs before, many times actually. There was more to it than that, but what was it?
I think it’s fair to say I’ve had a veritable s&*^storm of a year from a medical/physical perspective – with the loss of part of my colon coming at a super inconvenient time given that I was right smack in the middle of recovering from a double mastectomy and heading into 6 months of aggressive treatment for cancer. I’ve also had implants put in and taken out as well as ovaries, tubes and an ostomy bag put in and taken out, and additional hospitalizations for infections and GI blockages. In total, this was my 9th hospital stay in 14 months not including 2 ER visits, 4 months of chemo, 25 radiation rounds, and 10 days of daily IV antibiotics. I’ve lost many days and nights away from my kids and family while I’ve endured some pretty horrendous pain and anatomical changes over the past 14 months, but my main focus has always just been to put my head down, grit my teeth, get through it and get home to them as soon as possible. In doing so I don’t think I’ve ever really let myself process the toll this has all taken on me, how completely and utterly traumatic it has all been. However, there I was in the recovery room finding myself potentially at the end of this complete s&^$storm with this hopefully being my last major surgery and hospitalization, and the elation I felt was indescribable, palpable, and apparently contagious.
I became overwhelmed, giddy, and just out my mind joyful as I felt that moment was marking the end of this particular 14 month horror show. As this realization kept washing over me – pure, unbridled elation ensued, and if you were within 20 yards of my bed – as were the awesome nurses of the PACU- along with my unsuspecting parents, husband and surgeon -then you were treated to the full on Happy Reb show. LOOK OUT. This included, at a minimum, hilarious and extremely raunchy jokes about literally anything anyone said, and then each person got a complete, unrequested, personalized rap song with their name and some kind of degrading lyrics. Hmm….as I’m telling it now it seems like there should be more to it because we were all laughing so hard we were almost peeing ourselves (except I came to the party equipped with a catheter so I was just fine), but seriously, we were laughing so hard we were convulsing – for like 3 hours – and I don’t really think there was much more to it. I was just out of my mind happy, grateful, and giddy, and the nurses at Greenwich Hospital have to just be the best in the world. They are not only amazing at their jobs, but they all have great personalities, wonderful bedside manner, and are as smart and funny as they come. For these amazing nurses, Yvonne, Pricilla, Vikki, and then Sarah – to not only put up with my drug induced cray cray – but to enjoy it and get in on the party was what really made it magical. Well, I say “magical,” – my parents would probably go with “horrifying,” as my dad is still trying to unsee and unhear some of what went on up in there, and my husband would likely go with the word “mortifying” – so there may be a few different versions of this “rap recovery” party being told.
To give you some highlights of the festivities, Pricilla’s unsolicited personalized rap song went something like this: “Pricilla, Pricilla, she likes to drink Tequilla, and if you don’t give her some, she just might straight up kill ya.” Vikki’s went like this: “Her name is Vikki, she comes to work with a hickey, and if I don’t stop rapping – she’s gonna come and kick me.” You get the idea…
Over and over again I went on and on with different permutations of these raps for anyone that came near enough my bed for me to catch a glimpse of their name off their tag. These horrible, generally insulting raps hit our funny bones and we were dying laughing thinking nothing could get any more hysterical when… the phone rang. Now mind you, these nurses are totally just doing their jobs, I was the one being silly, but I was also the only patient left in recovery at this point so we could let loose a little without disturbing others. Well, when the phone rang and Pricilla – who was standing nearest to it – asked one of the other nurses to answer it, we started teasing her and asking why her lazy arse couldn’t answer the damn phone her damn self? This is when we really lost it. OMG. It turns out Pricilla has a Philipino accent that causes her to pronounce her “Ps” like “Fs.” So when she answers the phone and says “PACU” it comes out like “F&*^ YOU.” For some reason she had never told her colleagues this until that night and they had just always wondered why she was shirking this particular responsibility. Oh my god I don’t think I’ve ever laughed so hard. Once the cat was out of the bag – she kept repeating it and was cracking up saying PACU (“FACU”) over and over with her accent. Tom, my parents and I, and the other nurses were dying laughing. It was hysterical. Oh but it didn’t end there. The jokes kept flying all night with my awesome night nurse Sarah …who I think was responsible for writing “Rockstar Reb Keep Rapping” on my room board …
and the laughter went straight on into the next day when I was lucky enough to have not one, but two amazing nurses to myself Cat and Kathleen. I then had sweet Sara (without an h), super Sylvia, and the amazing Antoinette! Each one is as nice, smart and caring as the next and they honestly feel like family to me now. I can not say enough about what these special people mean to me and the impact they have had on my healing. People may think I’m crazy for saying this, but I have worked in hospitals my entire career and I know enough to know that the nurses are the ones who make the biggest impact on your hospital stay in every way. I specifically choose my hospital based on the nursing staff and choose the doctors or surgeons second. Greenwich Hospital should be so proud of the nursing staff they have cultivated and retained. The experience exceeds any expectations you could possibly have and I am forever grateful for this. Needless to say I’m doing well and had an incredible stay at Greenwich Hospital.
In addition to the awesome nurses, my surgeon Dr. Greenspun happens to be the absolute best as well. He is brilliant and a true artist, not to mention he is kind and has a lovely personality. I’m telling you I could not have had a better experience anywhere. If it weren’t for the pesky heparin shots I got every 8 hours, and feeling as though I’d just been shanked in a prison riot every 6 hours as my meds wore off, I would have thought I was at a spa. Oh yes and the oxygen tubes in my nose, IV in my arm, catheter and drains coming out all over my body, and pressure stockings on my legs were a subtle reminder as well. Not so spa-like but close…as you can see I am a pro at this by now and brought my own pillow and blankets so I was as cozy as a gal who just got sliced up in 3 places could be! Thank you Greenwich Hospital for putting Humpty Dumpty back together again in the best way possible, and thank you to everyone who offered support and love in getting through this. I plan to rest, recover, and move forward restored and with renewed strength and energy to continue The Cancer Couch mission in 2017.
No, actually its “My Other Boob.”
Yes, My Two Front Teeth Boobs.
I think completing the pair will go a long way in pulling some of the attention away from the “Front Butt” and “Uniboob” I’ve been sporting. Perhaps. So yes, I’m heading back to the hospital on Friday to finish off the set just in time for the holidays.
Now, while I do love to joke about the multiple body parts that have come and gone from my person over the past 14 months, we all know that this is a actually a really serious and very sensitive issue for me and so many women with breast cancer. No matter what cancer has or hasn’t taken from your body, and no matter whether or not you have one, two, or zero breasts, everybody wants to look and feel their best.
Well…my friend and another fellow NYC Ford Model of Courage, Kitt Allan – who specializes in needs-based fashion, sells a line of lingerie, bras, and swimwear to help breast cancer patients do just that – look as fabulous as they want! Check out Kitt Allan Needs Based Fashion website and on-line store. She has beautiful pieces and, from now through the holidays, is generously donating 20% of purchases to The Cancer Couch Foundation. This week she will be featuring one of a kind holiday items so take a look!
Thank you so much Kitt, I love what you’re doing!
Your items are unique, beautiful, thoughtful and lovely…just like you!
Oh here it is – it’s me! I’m the beef. Let me tell you ladies, if Donald Trump’s Access Hollywood audio-tape didn’t make you feel like a piece of meat – this surely will! This funny looking smiley face featured in the photo below is drawn on me and will serve as the highly sophisticated “road map” my surgeon will be using to guide his slicing and dicing today during my 10 hour carving session. I mean, seriously?!
Not only does the fact that a Sharpie – that could have been borrowed from my 8 year-old – being applied to your body to “mark” the spot where major surgery will be performed seem alarming, what is worse is he applied it 2 days prior to surgery. Um…does no one shower?! The lines are barely even visible any more, and although he asked if I could have someone “freshen it up” – no one in their right mind is willing to go near that responsibility with a 10 foot pole – or an 8 year-old’s Sharpie as it were.
So, the first of my two 10 hour surgeries is today – likely happening while you’re reading this. I have the easy job – I just have to lie there and stay asleep. I am in awe of surgeons who do these lengthy, intense surgeries on an almost daily basis. I have a thousand infantile questions of course – like…how does he eat? Pee? Etcetera? I’ll have to ask him tomorrow and report back. I would be hard pressed to get through 2 hours without a snack and a chair – never mind 10!!!! Like I said, I have the easy part.
My friends and family have been reminding me though that I tend to “romanticize” my hospitalizations and surgeries and forget how miserable and painful the recovery is. I see their point. I do get a little irrationally excited about the “rest” and quiet time to read and loaf around that I’ll have in the hospital and recovering. I do tend to forget the horrific pain, frustration, and sometimes life threatening complications that come with all this, and how limiting and annoying it is to not be able to do normal things like sleep or shower without pain and lots of assistance. Right. So I know there is all that to deal with.
However, I have just returned from some whirlwind traveling to distribute checks to various cancer centers. These trips were humbling, awe-inspiring, amazing. and I’ve learned a few life lessons I’m trying to keep in the forefront.
Number one, STFU. This is far and away the most important life lesson I am coming home with. When I am even thinking about formulating a complaint in my head – like about the recovery from these surgeries – I think about the perspective I just gained from my friends dealing with metastatic breast cancer, horrific, unending side effects of unending treatment, and I silently slap my brain and just think STFU right now! I am talking to myself here – but if you want to take some of this perspective for yourselves – be my guest and STFU too 🙂 and I mean that in the loveliest way possible! Let me explain. First of all, for those of you who do not speak “text” – which I believe may be quickly replacing Mandarin as the most popular language on the planet – I will give you a quick tutorial. STFU stands for Shut The F*&^ Up, not to be confused with LMAO (Laughing My A** Off) or DILLIGAS (DO I LOOK LIKE I GIVE A SH&^?) 🙂
After traveling around setting up “Angel Funds” in different cities for patients with metastatic breast cancer in financial need, and hearing about how many cannot pay for childcare while they receive treatment, or afford to keep their lights on because their medical costs have eaten through their savings, and they are unable to work – and then hearing about the unimaginable pain friends like Beth Calabotta have been forced to endure along with extreme physical limitations now and terrifying prognoses, my head is spinning gratitude for my blessings. Despite the cancer, and despite the surgeries I have coming up, this is nothing compared to what these people are facing. I have a great support system, access to great doctors, resources, and only Stage 3c cancer. I should really, seriously, STFU and count my blessings not my burdens. And so I am.
I am so thankful I have the opportunity to have these restorative surgeries. I am as excited as a kid on Christmas Eve. I was in such a horrible place mentally and physically this time last year, and now I am heading into months of recovery, not just from operations, but from all of this. A chance to at least get back some of what has been lost and move forward feeling whole again.
I am so thankful for the amazing outpouring of love, support, prayers, well wishes, little comfort presents, texts, and good vibes sent my way by so many people, and all of you who take the time to read this and let me know you are with me. Thank you, thank you so much.
I will provide updates as soon as I’m able and answer the burning questions of how surgeons take care of their bodily needs and functions during a 10 hour surgery!! I’ll get answers:) Be well my friends. Thanks for the support and healing energy!
Go have a hamburger in my honor :)!