how to love a chair

Goddess pose

(photo: Larisa Forman)

16 months ago I invited you to join me on an adventure to CancerLand. Through my pieces on Rebelle Society and the more spontaneous posts here on my blog, I took you with me from the point of my initial diagnosis (terrifying), on a chemotherapy roller coaster ride (tenacious) and through my surgical recovery (triumphant). We’ve moved through the phases of my disease and healing process together as a tribe and I’ve tried not to pull any punches along the way. I’ve attempted to share my experience of cancer with you without embellishment, exaggeration or pretense. I’ve tried to be authentic: presenting my vulnerabilities when feeling weak, and my fortitude when feeling strong. Hopefully together we have demystified the big C at least a little, shed some light on chemotherapy, debunked mastectomy and embraced on the healing process.

I hope that through my writings, my FaceBook posts, and my Instagram pics, that you’ve seen just how resilient we humans are. Since I began attending the cancer support group at Palliative & Supportive Care of Nantucket, we have said good-bye to a number of extraordinary members. Each parting has been painful, scary and traumatic for those of us remaining. But my resolve, OUR resolve as a community to memorialize those who have departed by living the fullest lives we can live, and cherishing every single fucking moment, has grown with each grief-choked tear.

I can no better explain to you why some of us survive and others pass than you could reassure your 20-something year old daughter that after immense heartbreak, she will in time fall in love again. But here I am. And here we are. And I’m still writing. And you’re still reading. And we owe it to Jenny and Claudia, and my late husband Aaron, and everyone we’ve loved and lost to keep going.

We owe it to them to smile big, laugh lots, and love hard.

Now, as of July 16th, almost a year and a half after our disembarkation, I’ve finally  come home. I’m finished with treatment. The infusions are over. My time in the chemo chair is over. The trips to MGH are bi-annual and in just 9 days I will be able to say I am officially a year out from the removal of my tumor. 365 more days after that I will be 80% likely to side-step a reoccurrence.  Something will kill me eventually, but it won’t be cancer.

I’m sure I’ll write about my life as a cancer survivor in the months and years to come, but for today, I’d like to leave you with the following video. My heartfelt thanks to Lisa Frey for filming, and to all of you for watching.

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(10 Practical Tips for the First 10 Days of Cancer)

(Making the Breast Decision)

(Life After the Knife)

{How to Talk to Someone with Cancer)

(Let’s be Friends)

 

Nantucket: Fighting Cancer with Bikes and Likes

Bikes Fight Cancer

I don’t really know Nantucketeer Sarah Montgomery. I see her in passing sometimes at the grocery store, or during morning drop off at the elementary school, but our exchanges have been limited. So a couple of months ago when she called out to me in the NES parking lot, I was a little shocked when she asked me if she could dedicate her upcoming Pan-Mass Challenge ride to me.

At first I didn’t know what the PMC was, but Sarah passionately filled me in. Not only is it an incredible annual bike-a-thon that crosses the Commonwealth of Massachusetts, but also a charity event that channels 100% of every rider-raised dollar directly to Dana-Farber Cancer Research though the Jimmy Fund, and therefore It is considered the most successful fundraising event for charity in the nation.


images-1

Participants each have their own reasons for riding, volunteering and contributing to this powerful event. Some ride in memory of a loved one who was affected by cancer. Some ride for themselves, celebrating as I am about to, a long battle finally won. Some ride to inspire awareness in their communities. Last year, Sarah Montgomery rode in memory of her father, who in 2001 was diagnosed with cancer.

As she detailed her reasons for riding, I felt that all too familiar cancer-created grief choke hold my gut. Images of my late husband, wandering hopefully and desperately through the halls of Dana-Farber, our last ditch effort to save his life, flooded my brain.

While she spoke, I could feel Sarah’s pain, her anger and her grief but also I could sense the intensity of her commitment to DO SOMETHING, to change the outcome for the next person she’d know who will be diagnosed with cancer.

With the staggeringly high incidents of cancer seemingly on an unchecked skyward trajectory, it is no longer a question of who, it is a question of when.

By the year 2030, 2.3 million people in the U.S. will be living with a diagnosis of cancer, compared to about 1.6 million in 2010.

In my own life I have lost my husband to lung cancer, my grandmother to pancreatic cancer and nearly lost my father to Stage IV throat cancer in 2012. Since my own March 15th, 2013 diagnosis, I have said good-bye to 5 fellow patients.

Sarah’s grief and anger and sense of injustice may as well be my own… and now it’s time to band together. It’s time to support as many ways to research, and refine our approach to cancer care and patient wellness. It’s time to get involved and be proactive. It’s time to eat organic food, filter our tap water, use massive amounts of sunscreen and please, for heaven’s sake, QUIT SMOKING.It’s time to join the fight, join a ride, Swim Across America and walk for awareness.

With financial support hospitals and research groups such as the ones at Dana-Farber and Mass General, can make huge strides in advancing new targeted therapies, hormonal therapies and dialing in fine tuned chemotherapies engineered for specific cancers.
As bleak as the rise in cancer may feel, there is hope building and gaining momentum around the corner of every diagnosis. More and more people are living with cancer and many, many more are surviving cancer every day. I am living proof.

Without financial support, the creation of Herceptin, my life-saving targeted therapy, in the late 90’s, I would not still be here. New drugs like Herceptin are beings created all the time.
With these new treatments, a positive outlook, diligent self-care, tenacity of spirit and community support we have a better chance of beating back this beast than ever before.

Sarah recently sent out a newsletter describing her reasons for riding. It wasn’t until reading her moving story, that I realized that through the blog I had started 15 months ago, I was reaching people like Sarah, people I barely knew. Reaching them and giving them hope.  It’s this hope, like Sarah’s hope, that assured me once again that all I have suffered and shared has not been in vain. That through soldering on, hopefully with a little grace, I have been able to inspire others to join in the fight, and for that alone, I would do it all over again.

Please join me in supporting Sarah on her ride across the Commonwealth. Please make a donation to the PMC for Sarah.

If you cannot make a donation please spread the word about her ride, her campaign, and her journey. Share it with you friends on FaceBook and Twitter.

Maybe next year I’ll be strong enough to join her!

#NeverGiveUp

Pan Mass Challenge

not done yet

A Smooth Sea

I’ve long trusted the universe and for the better part of my adult life, have been able to put stock in something bigger than myself. I think that’s why my cancer diagnosis never crippled me.

I have faith.

I I have faith that everything happens for a reason, and that even life’s biggest obstacles are put in our war to teach us priceless lessons.

A lot of heavy stuff had transpired in the last few months, and yet has worked out for the best. Our lease expired on May 15th, and though we scrambled to find a suitable housing situation for months, a great little opportunity eventually came through. There were personality issues for me at the studio, which were eventually abated and morphed into a managerial promotion. We were forced to put the land we purchase just prior to my cancer diagnosis back on the market, and it sold. Private lenders were paid back. After 18 round of chemotherapy, mostly in Boston, my oncologist gave me permission to do the remaining 13 infusions locally – saving my hundreds of dollars and countless hours of travel time. Things were looking up…

So… how sad was I yesterday, when shortly after the needle was extracted from my arm, my old friend nausea showed up knocking on my door. Dizzy, exhausted, and no– not yet done with treatment, despite the fact that it’s been 15 months and the story seems like it should have come to some conclusion long ago – these side-effects shocked me. Me, the newly Cancer-Free Caitlin. And they were, excuse my french, super fucking disappointing.

I don’t know why I thought that somehow this time things were going to be different… As if all the empirical data I’ve collected over the last 3 dozen treatments would somehow support a different conclusion… But maybe it was because I had been averaging 16 miles a day on my bike every day for the last week or because I had just completed a stand up paddle yoga teacher training last weekend. Or maybe it was because, in my rush to finish this chapter of my life, I’ve decided to open up a new business, and bring a 10 week old puppy into our family. But somewhere along the way, I feel into a little denial pothole, and apparently I forgot just how yuckie  the chemo would make me feel

I got home from the hospital and balled my eyes out.

I’m so close to being done with chemo: with Herceptin, and yet some days – like yesterday – it feels like these last few weeks will never end. Don’t get me wrong, I am sooooooooo grateful for my treatment. I am so grateful for each of the three chemotherapy drugs i’ve been on, and especially for this last one, which for my specific kind of breast cancer, is the real power punch: blocking my cancer from binding with the protein in my body it’s specifically attracted to. But common Cancer Sisters, let’s just admit it: treatment is HARD! and it’s okay to feel resentful, tired, angry, sad, vulnerable and weak at times. At least, that’s what I keep telling myself…

You can be full of grace and gratitude and still have rough days. Fuck that, you can have a rough WEEK if you want!

Anyway… I know many people think I’m done with treatment (and that’s kind of hard too), but I’m not. I’m almost done, but not quite yet. I have 2 more infusion to go: June 25th and finally July 16th. And you can bet that I will be taking full advantage of social media that day to Tweet about it, post it on FaceBook, take all kind of ridiculous chemoAsanas for my Instagram account, and celebrate the my way through the halls of the Nantucket Cottage Hospital. I want crazy dance music in the infusion ward and a big bouquet of flowers for my chemo nurse, Gretchen. I want to crack open a big bottle of Veuve and dance all over the place.

Then I’ll go home and sleep for 2 days….

Infusing: May 29th, 2014

Infusing: May 29th, 2014

Electrifying Nantucket: one yoga pose at a time

On September 18th 2012, I taught my first yoga class at the newly reopened Dreamland Theater. Accompanied by the internationally acclaimed yoga spin master, DJ HyFi and buoyed up by the visionary production stylings of my partner, Burr Tupper, we put together a great night. 44 Nantucket yogis and yoginis packed the Harbor View Room and I think we all felt a little high. It was a chance to come together in a new space, over looking the harbor we all love, and try something new. By the time the evening was over our hearts were deeply entrained and smiles had spread like wildfire across our faces.

I knew we had to do it again.

I’ve always thought fondly of my fellow NHS alum, and music aficionado, Pete Ahern. So after watching his career as a DJ build steadily, especially in the last few years with steady gigs at Pazzo and the formation of Audio Architects, the production team he and Billy Desmond spearhead, he seemed like an obvious choice to collaborate with. I especially liked the idea of working with someone else local, someone who had roots here as well, someone I knew I could build an ongoing partnership with.

Pete was game, and on December 4th, 2012 Electric Flow was born. Once again, I rented the Harbor View Room at the Dreamland – and 39 yogis showed up for a challenging 90 minute practice. And again, my always supportive and artistically inclined partner came up with a few visual surprises. Burr enlisted the help of local filmmaker Kristen Kellogg, and they put together a black and white montage of vintage yoga footage and an animated beating anatomical heart. The footage played on a makeshift screen, Tupper had created seemingly out of thin air, at the beginning of the practice, and as the beat of the heart faded into the distance, Pete’s electronic grooves steadily built. It was magical.

Electric Flow: December 4th, 2012

I knew right away Pete and I had a great chemistry together. Even though it was our first time collaborating, I felt we got each other. Clearly in tune with bodies in motion from years of spinning at parties and in clubs, Pete had an immediate knack for supporting the yogis during their vinyasa practice. We came up with ways to communicate to each other silently (hand gestures for take the tempo down, take it up, cool us off, heat us up, etc.) but mostly the evening flow took care of itself. I took queues from Pete, he took queues from me and the crowd was buzzing.

Due to overwhelming demand, two months later we decided to try it again – this time with a little help from our friend Floyd Kellogg.

Maybe you know Floyd from You Scream, I Scream, the band he heads up with his partner Audrey Sterk. Or maybe you know Floyd from the Brewery, where he plays in the crazy punk rock/rockabilly/alterna comical music  duo Lance Mountain Dance Party. OR maybe you know Floyd because his new project, Violent Mae is awesome, and now available on iTunes. In any event, Pete and I met up with Floyd, who had collaborated with Pete a few times at Pete’s regular Pazzo gig, and asked him to play percussion. The resulting three-way was killer. The guys played off each other and the yoga nearly took care of itself. with 40 beating hearts in the room and the thumping pulsation of the music I thought the roof might blow off the theater. And just to be clear, I’m not talking about volume, I’m talking about vibration. It was epic.

Students lining up for Electric Flow: February 6th, 2013

 

Electric Flow: February 6th, 2013

It was so much fun working with Floyd and Pete together we almost immediately booked the next gig. Then I got cancer

I thought at first that I should cancel our April 25th reunion; after all I was getting chemotherapy ever week, my hair was falling out, I felt sick as a dog, and part of me wanted to hole up in my house and hide. But then I realized that if I was going to survive, I had to keep teaching. Cancer takes so much away from you – it is one big practicing in non-attachment – that teaching more than ever helped me to stay present with myself. So after much debate about how’d I’d hold up, we decided to go for it.

On April 25th, 2013 nearly the entire Nantucket yoga community showed up at the Dreamland and turned our Electric Flow into a fairly spontaneous fundraiser. With the Dreamland’s generous support, we were able to cross the hallway from the Harbor View room and occupy the Studio Theater, filling it to the brim with over 90 students. Pete and I were join by both Floyd, and his partner Audrey on stage. Floyd played upright base, Audrey joined him on percussion, and Pete spun the sexiest electronica and ambient grooves. To make an incredible evening even better, Burr and Kristen Kellogg collaborated on a video installation, which was projected on the screen behind me.

Electric Flow: April 25th, 2013

It was one of the most powerful, magical and profound moments of my life, and I will cherish it forever.

Electric Love: March 27th, 2014 6-8pm

This week, Pete and Burr and I are collaborating once again. This time we’ve enlisted help from local yoga teacher and mindfulness meditation instructor, Clay Twombly as well as Brooklyn-based artist Craig Anthony Miller. And like last time, this event is a fundraiser. Only this time, it’s not for me. I am 12 months into my cancer treatment, and officially CANCER FREE. With 7 more infusions to go (the last scheduled for July 17th) I am all but out of the woods and well on my way to recovery. Healing would not have been possible though, had it not been for the support of local non-for-profit, Palliative & Supportive Care of Nantucket. So this time around, we’re giving all the money to them.

In 2014, there will be an estimated 1,665,540 new cancer cases diagnosed and 585,720 cancer deaths in the US. Cancer remains the second most common cause of death in the US, accounting for nearly 1 of every 4 deaths.

Clay, Craig, Pete and I have all been personally affected by cancer – and all of us would like to do whatever we can to abate it’s tide of trauma. Through music, art, meditation and yoga we  believe we can heal the world, and we’re starting here, on the tiny island of Nantucket.

Please help us support PASCON, an organization who’s services have helped hundreds of Nantucketeers in times of need. Whether it’s navigating  long term-illness or the death of a loved one, PASCON exists solely to help people transition through life’s more challenging times.

Spreading the Love at 97.7ACK FM

Want to know more about this Thursday evenings Lovefest? Listen to Pete and Clay and I being interviewed on 97.7ACK FM this morning.

[jwplayer mediaid=”3982″]

Electric Love: poster by Craig Anthony Miller

 

Sex, Lust and Cancer

henri de toulouse-lautrec The Kiss, In bed 1892

I have a new piece up on RebelleSociety.com. It’s called Sex, Lust and Cancer: Tips for Staying Sexually Alive, and it’s by far the most personally revealing, intimate piece I have written to date. It feels a little scary, putting everything out there, but so far the feedback I’ve gotten from other cancer survivors has been tremendous. If the article has helped shed some light on a taboo subject for even a handful of people, any vulnerability I feel having published it is well worth it.

My journey continues. Yesterday I had my 23rd infusion (my 5th in this cycle) and I’m one step closer to the finish line (I have 8 more to go). Although I feel exhausted, this infusion hasn’t rocked me nearly as hard as the last one did three weeks ago. For that I am grateful.

In between treatments my life continues. I have been lucky enough to go on two exotic yoga retreats this winter and study with some amazing and powerful teachers. In addition to having the new piece out on Rebelle, I recently took the bull by the horns and started writing my book on using yoga to navigate cancer. I’m teaching more and more yoga, (now quite a bit off-island) and just reopened my massage therapy practice. I feel like I’m finding my rhythm again.

I think 2014 is going to be an amazing year. May it be for you too!

grief

Caitlin with cancer

I took a yoga class this morning and cried. I cried every time we came into a forward fold. I cried every time we opened our hips.I cried during cat & cow, child’s pose and even downward facing dog.

I cried for the last 8 months of treatments my family has endured. I cried for every needle stick, every blood test, every biopsy, injection and surgical procedure. I cried for every night spent writhing in pain on the couch, and every morning kneeling over the toilet. I cried for every time I was too tired to play with my son, or walk to the beach.

I cried  for the natural breasts I now miss; the ones I was born with, the ones I used to nurse my son.

I cried for the physical strength I once had, the endurance I’ve lost, and the muscle tissue that has atrophied.

I cried because plank is hard, chaturanga is impossible and cobra is painful. I cried because laying on my stomach pushes my implants into my chest and makes it hard for me to breathe. I cried because I’m not sure I like anything about these new appendages.

I cried because I’ve lost sensation in the skin across my chest. I cried because I cannot feel my nipples, and when my lover touches them I do not know.

I cried for all the days I have not recognized myself. I cried for the impermanence, the letting go and saying good-bye.

I cried for the medically-induced early menopause. I cried because I will never have another baby. I cried because last night I had my first true hot flash.

I cried because amputating a part of my body has been a big deal, though I have played it down.

I cried because for 8 months I’ve rarely let myself.

I cried because it was long overdue.

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I am starting over with a new body. This body is softer and wiser. It has some big scars and a few little ones, and each one tells a powerful story. This body moves differently, expresses itself differently and even sits in silence differently. But as vulnerable as it may be, this body loves bigger, connects stronger, and is home to a depth of gratitude and appreciation I would never have found on my own in the time before cancer.

“When we become sick, we often take the illness personally and feel that our happiness is conditional upon getting ride of it. We forget that illness- along with aging and death- is a hallmark of our human existence, and we get angry at our bodies for “letting us down”. When we realize that illness is inescapable, realize that stress around illness increases our suffering, and that being sick is not a shortcoming – only than can we be at ease with, and even empowered by, illness.” ~ Jean Smith

May all we learn to hold ourselves sweetly, no matter where we are. May our commitment to practice compassion begin with compassion for our Selves. May we continue to show up, rise up and hold space for our own intrinsic value in sickness and in health.

no more complaining

positive thinking

“Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” ~ Groucho Marx

#KeepYogaWeird

So many incredibly challenging things have happened this year, and yet I have felt happiness like never before. The ups and downs and highs and lows that accompany a life-threatening disease are many, but the gratitude that floods your soul when your appreciation of life deepens is  immeasurable. If we can reframe the way we see life’s challenges, truly we have the power within us to take any tough situation and make it a positive one. When we start focusing on the positive we attract even more positive people and events into our lives.

Since making the mental shift that my breast cancer diagnosis has ultimately been a positive experience, all kinds of amazing things have started to happen in my life. Recently, I won the #KeepYogaWeird photo contest, $500 and two tickets to Wanderlust Austin’s weekend long Yoga + Music Festival!

Appreciating the power of positive thought, and that like attracts like, I’ve decided it will be interesting to take this premise one step further: so for the next 3 days, I will try to avoid articulating a single negative thought. It sounds easy, but I know it will require vigilance and dedication.

This weekend I am going away for a reason other than cancer treatment for the first time in 8 months! Which also means it’s the first time I’ve left the state of Massachusetts in as long.

I am headed to New York City for the night with my partner, where I will practice with my teacher Elena on Saturday morning.  I haven’t seen Elena since I was first diagnosed with breast cancer back in March. I also haven’t taken a vinyasa class since my emergency port-removal surgery last Saturday night (more on that coming out on RebelleSociety.com this Monday). I am looking forward to a dose of my old town and an infusion of Elena’s elegant gracefulness and potent energy.

Saturday and Sunday night we will be in CT for a dear friend’s wedding. And then on Monday morning it’s up to Boston to see my oncologist to discuss the next stage of my treatment. (okay, so part of the trip still involves cancer…but hey, it’s the new normal).

It might get dicey here and there. I might be tempted to complain, or voice an anxiety. There will certainly be opportunities to worry about what to wear, or how I look. It might be hard for me to practice in a room full of strong and healthy bodies, while I am slowly healing from surgery and navigating my way around my still tender new boobies. But this is where the challenge will get juicy.

I’ll let you know how it goes.

“Beliefs have the power to create and the power to destroy. Human beings have the awesome ability to take any experience of their lives and create a meaning that disempowers them or one that can literally save their lives.” ~ Anthony Robbins

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{Let’s be Friends}

Hot Rubber

This is an exercise. This process of writing. It stands in place where once physical exertion use to be. When in the time before cancer, I used to move my muscles and bones, now I push my mind to extract thoughts, words, descriptions. It makes me feel clearer, proactive, more engaged, and re-connected. I don’t write for sympathy, or  empathy even, but for the sweet relief that comes from a solid work-out. This mental treadmill temporarily pacifies my atrophied body, and so I continue…

~

MGH Cancer Center

It is a strange thing to be cancer free and still in treatment.

I am out of the woods. I am going to live. There is no more imminent threat. No more DEFCON 4.  No more evidence of disease. So in many respects I should be elated, overjoyed, or in the very least, relieved.

And I am. Much of the time. But not always.

Sometimes I am clumsy with my feelings, and I trip myself up.

I want so badly to celebrate victory over my disease, to feel – really feel – in my cells that the danger has passed, and that I have come out on top, ahead, successful, triumphant. My heart aches to authenticate the alleviation I am meant to feel knowing I have won. I hunger to embody the gratitude my mind has embraced for surviving this ordeal, but my tummy is rejecting the solace of cancer vanquished.

So I feel guilty and disgraceful.

I have lost people to cancer; friends, relatives, a husband, and yet I am still here. Why? I know people living with Stage IV cancers who move through their lives with dignity and seem not to have a single ungrateful moment. Surely I am a bad person for indulging my trivial discomfort.

And yet my physical pain is real, and life still revolves around treatments, side-effects and medications. There are more trips to Boston, more Herceptin, Tamoxifen, early menopause, and come January,  more surgery.

I ping back and forth between feeling justified in my anxiety and feeling ashamed of my short-sightedness.

Chemo now has me in a bind, literally. My gut is twisting. My intestines cramping. My digestive system in revolt. I hunger for food, but  cannot eat. I am subsisting on peppermint tea. Candida, apparently unchecked by the probi0tics I take each morning, makes me emotional and itchy. Insomnia visits me nightly and hosts thoughts of unworthiness and insecurity. I feel isolated and crave constant companionship, reassurance that I am not alone. I am bloated in my abdomen and swollen in private places you cannot see beneath my clothes. I feel ugly and vulnerable.

Sunday night I gave myself a large second degree burn on my breast from falling asleep with a hot water bottle. I’ve lost sensation in parts of my chest, so I had no idea my skin was boiling beneath the hot rubber until dressing Monday morning. Obviously the burn didn’t cause me any pain, although you’d be hard pressed to believe that if you saw it, but there was something so sad to me about this self-inflicted injury, I burst into tears when I realized what I had done.

It dawned on me this morning while watching the sun rise over the Atlantic, that the psychic scaring I have suffered from cancer, while not a wound I will die from, is deep. There is no denying it, so I should probably stop trying.

I am going to be okay. I’m just not 100% okay yet.

Cancer survivors are just that, survivors. Implicit in this identity is the endurance of trauma: the trauma of breaking bad news to our loved ones,  of lying nearly naked on a cold CAT scan bed, the injustice of burning radioactive dye injected into sensitive places, bone scans, biopsies, disease staging, port implants, surgery, chemotherapy, radiation, infertility, neurological, sexual and digestive disfunction. We’ve temporarily lost our old identities as athletic go-getters, given up control of our bodies to nurses, doctors and caregivers and have at times felt extremely, extremely powerless. Let’s stop being stoic and call a spade a spade; we’ve been through a lot.

So, perhaps, instead of beating ourselves up – as I have, we would do well to forgive ourselves if this trauma does not fade as quickly as our tumors may have. Holding ourselves with the tenderness we would extend to a dear friend, maybe it becomes more possible to create space for those who have departed while accepting we are still here. Teaching ourselves to be patient with the healing process, perhaps we gain more insight into the mechanisms of recovery.

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{Let’s be friends}

It Takes an Island

Part of this letter was originally published on  September 19th, 2013
in the Inquieror & Mirror Newspaper on Nantucket

Fight Back with Love

 

For six months now, we have collectively fought my cancer with the support of the entire island, several fundraising events, home delivered good meals, childcare assistance and a whole lot of love.

Like a child who wakes on Christmas morning to a sea of sparkling wrapping paper, and the magic impression of Santa’s recent visit, I’ve had to pinch myself many times over the past 6 months to make sure I’m not dreaming. From the moment I was diagnosed with cancer on March 15th, to this very day, and I’m sure into the months to come, I have felt blanketed in Nantucket’s support. Despite the challenges my family and I have faced this year, my partner and I agree that we are two of the luckiest people in the world, cancer and all, for surely the love we have received has far outweighed the suffering we have endured.

During the first 3 months of my chemotherapy this spring my body crashed hard. Fatigued and in pain, I was often too exhausted to cook for my family. A meal train for us  was set up online, and within a few days it was full. 2-3 nights a week from March through May members of this incredible community took care of us. Friends, coworkers, yoga students and people we didn’t even know put together thoughtful, often beautifully arranged, healthy meals that made us feel nurtured and supported.

 To all of you, our deepest gratitude.

As my treatment journey continued and my health became more fragile, it was clear I would not be able to work. I closed my massage therapy practice for the time being and worried about loosing my teaching place at The Yoga Room. Much to my relief my employer and friend, Shannah Green, reassured me that she would keep my name on the schedule no matter what. My co-workers: Paul Bruno, Clay Twombly, Susan Browne, Bettina Broer and Patricia Dolloff, all took turns covering my regularly scheduled classes. They never questioned me if I said I was up to the challenge of teaching and were always there for me, even at the last minute, if I was too sick to show up.

When it was time for my double mastectomy in July, I was forced to rest for 6 weeks. During this time ever one of the teachers who taught my classes asked to put their earnings on my paycheck. Shannah began teaching a weekly seva class, gifting all of the proceeds directly to my family and I.

To Shannah and my co-workers at The Yoga Room, my deepest, deepest thanks. 

It goes without saying that the foundation of my support at the darkest of times has come from my immediate family and my closest friends, but I would like to publicly acknowledge the bravery of my parents, Joanne and Steve Marcoux, the strength and compassion of my partner, Burr Tupper, and the pinch-hitting help of my ex-husband, Paul Budzynski. Without their support, I would have been lost at sea. Instead I been buoyed up by their love and confident that my little boy has been getting all that he needs to thrive when I am absent.

To my little boy, who perhaps will one day read this, thank you. Thank you for understanding about Mommy’s booboos, shaved head, low energy and “broken boobies” (though I’m still dying to figure out where you came up with or heard that one!). Thank you for offering to “buzz your hair” to show your solidarity. I’m sorI’m I’ve too too attached to your golden locks to let you do it. Thank you for keeping your sense of humor on the days we’ve had to wear face masks, and for making silly games out of the millions of times we had to wash our hands.

And thank you for all the hundreds if not thousands of warm little boy hugs your been giving me your whole life, but especially this year. Some times I feel it’s been a diet of your love alone that has pushed me through to the end of my hardest days.

 

Caitlin Marcoux, Cancer Survivor, Breast Cancer Ninja, The Cancer Diaries

Griffin and I “playing” with our masks when my wbc counts are low

It has taken many anchors to keep my ship grounded these past six months, and most recently a few strong captains to take the helm. On Sunday, September 15th, a team of incredible women including Shannah Green, Julie Hilberg-Hunt, Megan Soverino, Vanessa Raab Moore and Patti Cattafe put together a stunning silent auction event at the Cisco Brewery. Spearheaded by my dearest of friends, Elisa Allen, these ladies created the most beautiful and touching event I have ever been at the center of. Together they collected auction items from some of the most talented artists, skilled artisans and tradespeople, hardworking merchants, industry folk, restauranteurs and craftspeople on Nantucket. I cannot say how deeply touched I am by their efforts.

Fight Back with Love organizers Megan, Shannah and Julie (Elisa not pictured)

Fight Back with Love organizers Megan, Shannah and Julie (Elisa not pictured)

Thank you to the following people who donated their time and skills, contributed their wares or helped in any way to make this weekends fundraiser such a success:

The Rose & Crown

Sally Bates Electric

Joann Burnham & The Nantucket Yoga Festival

The Yoga Room

Paul Bruno & Roaming Dog Yoga

Bettina Broer & Yoga with a View

Jessica Jenkins & Downtown Yoga

Patricia Dolloff Yoga

Megan DuBois Yoga

Burton Balkind & KindFlow Productions

Cate Raphael

Clay Twombly & Cambia Means Change

Susan Fitzpatrick

Susan Warner

Katie Ashley Compassionate Cuisine Coaching

Theater Workshop of Nantucket

Sally Charpie

Petticoat Row Bakery

Organic Nail Salon

Cara DeHeart & Seaweaver

Charlotte Hess

The Bean

Arbonne Products

Nantucket Seafoods

East Coast Seafood

Force Five

Atlantic Landscaping

The Water Closet

The Tile Room

East End Gallery

Robert Sturman

Laurie Richards

Ron Lynch

Kit Noble

Cary Hazelgrove

Beauty By the Sea

Lynn Tucker Beauty Products & Services

Santjes Ooman Massage

Ugne & Brandon Jellison and Authentic Body Therapy

Casey Boukus

Bartlett’s Ocean View Farm 

Pauli & Uribe Architects

Mindy Levin & Nantucket Family Chiropractic

Gary Konher & Nantucket Surf School

Christine Lee Pilates

Amber Hinds& Au Coeur  Design

Emily Brooke Rubin Jewelry Design

Claudia Buttler & Ambrosia Chocolate & Spices

Susan Lister Lock Jewellery

Nell Van Vorst

Christine Sanford

Patina

Hepburn

Zero Main

R.J. Miller’s & Ann Fitzgerald

Sarah Hutton Jewlery

Darya’s Salon

Toscana Corporation

Florabundant

Amy Pallenberg Garden & Design

Nantucket Holistic Health

Sheri Perelman

Tracy Cullinane Personal Training

The Westmoor Club

Nantucket Cycling & Fitness 

Nantucket Health Club

Anita Bierings

Michael Rich

Robert McKee

Jessica Sosebee Gallery

Audrey Sterk Design

The Lovely

Elise Gura & Space

Nantucket Beach Chair Company

Pollacks

Sam Parsons

The Lion’s Paw

Peter England

Annye Camara & Annye’s Whole Foods

Best of the Beach

Megan Anderson

Bruce Bartlett

David Berry & The Nantucket Honeybee Co.

Bodega

Dr. Buck Weaver

Bookworks

Nantucket Looms

Indian Summer

The Haul Over

Cru

Company of the Cauldron

Straight Wharf Restaurant 

George Riehof

The UPS Store

Stephen Swift

Neil Brosnan

Kitty Kania

Denna Charnes

Caitlin Jelleme

Rachel Dowling

Louise Turner

Thank you to the following people who helped before, during and after the event: Sky Wallace, Victoria Paige Ewing, Bettina Broer, Paul Bruno, Cate Raphael, Brad Nolen, Antitank Stefanski, Burton Balkind, Mike Allen, Erin Elizabeth, Heather Williams and Dina Warren. 

Additionally, thank you to The Cisco Brewery, Jenny Bence of The Green and DJ Pete Ahern for making the day come together with spectacular style and tying it all together with the healing energy of phenomenal food, drink and great music.

To everyone who attended “Fight Back with Love” and to everyone who bid on the silent auction items, my most heartfelt thanks.

Fight Back with Love

Incredible but true, the list goes on.

I’d like to thank Steve Tornovish of Krav Maga Nantucket for holding a special Women’s Self Defense class in my honor this summer, and to all the attendees for their generous donations – I bow to you. My deepest thanks.

To Ieva Aldins, of Dharma Yoga Nanatucket who taught one of her monthly Seva (charity) yoga classes for us this summer, thank you. And to the following yoga sisters and brothers who held donation yoga classes across the country in my honor throughout the last 6 months: Amber Cook at Moksha Yoga in Chicago,  Larisa Foreman, Kate Greer and Nocile Burille at Krama Yoga in Cambridge, Alex Jarobe and Rachel Ann Gasner of the Yoga Pod, in Bolder, co. and my whole family or yoga teachers and fellow 500-YTT candidates at the Asheville Yoga Center in Asheville, NC. And to Jennifer Hrabota-Lesser for her Bujangasana t-shirt campaign, which also raised money for our charitable fund – thank you.

Gratitude, gratitude, gratitude. 

To talented, local photographer Laurie Richards and former Nantucket resident and brilliant artist Hannah Stone, both of whom auctioned off portraits in my honor earlier this spring, thank you.

To Clay Twombly who made for me the most beautiful mala, thank you.

To my friends in Chicago, for dedicating this year’ Annual Shawn Koch Memorial Poker Run to my fight, thank you.

I’d also like to thank the following businesses for supporting my family and I directly: Dharma Yoga Nantucket for allowing me to take free yoga classes during my treatment, Pi Pizza, Susan McGinnis and The Center Street Bistro for feeding us on more than one occasion, Darya Afshari for cutting my hair and eventually shaving it off, Monika Rudnicka for giving me the most amazing facials throughout my chemotherapy, Sheri Perelman for Reiki, Casey Boukus for massage therapy and Jenny Bence for treating me to acupuncture with Tammy Belanger this spring.

Looking back a little, I’d like to Thank you to everyone who came out to Cisco on July 23rd for our Boob Voyage Party. Organizing that event gave me something to focus on other that my approaching surgery. Burr and Griffin and I will be moving out of our Heller’s Way home this spring, and I cant think of a better way we could have celebrated our time there. Funny how it took having cancer for us to finally throw a proper house party. Thanks to Doug Cote and Floyd Kellogg for our semi-pravate Lance Mountain Dance Party, what a blast.

I would also like to thank local pilot Chris McLaughlin and Patient Airlift Services for all there assistance getting me back and forth from Nantucket to Boston, whenever they could make it possible.

In closing I’d like to thank every person who sent me a card, or mailed me a care package, left a note on my back door, a four leaf clovers or hand knitted socks in my mailbox, a CD in my car, flowers in my living room, taught a class in my honor, said a prayer for me, gave me a hug, picked my son up for a playdate, gave me a hug, was brave enough to ask me how I was, gave me a reassuring pat on the back and told me with certainty that I could win.

Today I can say that I am winning, and I’m winning because of you. This enchanted island truly is home to the kindest most compassionate people in the world. And while it may not seem lucky to have cancer, I consider myself so lucky to have had cancer here.

Thank you. Thank you. Thank you.

(photo: Robert Krivicich}

(photo: Robert Krivicich}

Humbly Yours,

~Caitlin Marcoux

Me & The Red Devil: Chemotherapy the Second Round

Any way you frame it, chemotherapy is no walk to the park. There are good days and there are bad days, and all of it is out of your control. Many of the side-effects you might suffer depend on which chemotherapy drug you’re given. People react differently to different cocktails, and no matter how much research you do, you won’t know how you react to your chemo until it’s pumping through your system. At least I didn’t. For us, nothing about my breast cancer and it’s treatment has been predictable.

IV Fluids, Chemotherapy, Caitlin Marcoux, Breast Cancer Survivor

checking into the hospital for i.v. fluids post-chemotherapy. September 6th, 2013

People in the know will tell you A/C is the worst. They call it the Red Devil. There are multiple urban legends circulating in the breast cancer circles about how this life-saving yet toxic drug earned its nickname. It has a broad range of side-effects including HEART FAILURE and get this, Leukemia. It’s the heavy hitter they say; much harder on the system then Taxol.

It comes in a syringe instead of an I.V. bag and needs to be slowly injected into your port or peripheral veins carefully, so as to not damage near by tissue. The infusion nurse who administers it will approach you with a battery of personal protective gear: gloves, a paper dressing gown, face mask and even goggles.

They’ll tell you you’ll pee it out (it turns your urine red), and to be sure to flush the toilet twice if not three times. They’ll makes you wonder  what A/C is doing to our planet, not to mention the insides of your own body. You’ll wonder what damage it’s causing as it makes it’s way from your circulatory system to your kidneys and bladder and eventually the sewage system.

I’m grateful for A/C, but it’s a powerful drug.

Following the tough time I had with Taxol in the spring, I was nervous to start A/C this August, and nervous more for the many ways in which it might effect my life. Having survived three months of chemo and a double mastectomy, I have to admit I’ve been ready to get back to my regular life. The break I was given following my surgery gave me a taste of living a normal(ish) life again, and I was thrilled to have enough energy to teach some yoga and play with my son.

The days leading up to my first infusion on August 21st, I began to worry. What was A/C going to do to me? Would I loose my slowly growing hair again? Would my eyelashes fall out again? How much sleep would it interrupt? Could I finally return to the gym? Do a handstand? Or would I be back on the couch every afternoon?

I wondered, how much of the Red Devil’s legend was true?

The Red Devil, Chemotherapy, AC, Breast Cancer Treatment

The Red Devil

So far, I’ve been pleasantly surprised.  I’ve had two of the four dose dense infusions I’m scheduled for through October and I’m really only sick for the first 3-4 days following the actual treatment. As my white blood cell count drops again around day 7, I get pretty fatigued and my immune system wears thin. But seriously, I’ve been tired for 6 months, so a little more exhaustion is no big deal. It’s certainly a lot less than other people have to deal with.

I have to admit that the second treatment was harder than the first, but that still, looking back on how I felt in the middle of my 3 months of Taxol, the last 3 weeks haven’t been so bad. Some days I’m nauseous and tired and other days I feel like a perfectly healthy human being.

When I went up to Boston for my second infusion of A/C on September 4th, I wanted desperately to go out to dinner that night. I put much thought into finding a special place to meet my pseudo in-laws, who drove 90 minutes each way from NH to meet up with us.

My partner and I spent the day at MGH and I finished my infusion in time to change into a pretty dress and jump in a cab. Sadly, and very much against my own will, 45 minutes into dinner, I was making frequent trips to the bathroom. Socializing in a predictable and schedulable way just isn’t part of my repertoire yet.

Our evening interrupted, we rushed back to our friend’s Clarendon street home, where I spent the next 2 hours on her bathroom floor.

A/C, Chemotherapy, Caitlin Marcoux, Breast Cancer Treatment, The Cancer Diaries

A/C number 2: September 4th, 2013

Feeling broken and in pieces, Burr and I left Boston the next morning.  We arranged for a wheelchair to meet us curbside at Logan (a brilliant perk everyone dealing with acute illness should take advantage of if they have to deal with air travel) and hopped on a donated Cape Air flight made possible by my friends over at P.A.L.S.

Patient Airlift Services is a wonderful charitable organization which: “arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes. Our network of volunteer pilots provide this service without compensation using their own or rented aircraft. In no case are fees of any kind charged for these services. PALS flies as far South as Virginia and as far West as Ohio.”

We arrived home mid-morning and I more or less crawled into bed.

The two days following my second infusion were brutal. On the third day I was dizzy, nauseous, and struggling with a gnarly headache. After speaking to my oncologist in Boston, I checked into the hospital here in Nantucket for three hours of I.V. fluids and anti-nausea meds.I left the hospital feeling like a much more complete person, and feeling fully recovered 24 hours later, stuck my first handstand in 2 months the  following day.

Sure, there are other minor annoyances. My hair follicles are irritated and angry again. I’ve got lots of little hot bumps on my scalp and on the back of my neck. I don’t often feel pretty, and it looks like I’m about to loose the baby hair that’s been growing back since my surgery. I scratch my head compulsively. Some times my belly gets oddly distended as soon as I eat the smallest of meals, and my cycle is all over the place. I cry for no apparent reason at all, often. Let me stress the word often.

But everything is temporary.

The storm surge that is A/C is over as quickly as it comes on. 4 days after my second infusion I felt fine. Really, like 75% normal. That Saturday night Burr and I rode our bicycles into town and he took me out to dinner. After sitting at the Proprietor’s bar for a couple of hours, I still had enough energy to ride all the way home to Cisco. I taught yoga the next day, and  4 more consecutive classes in the following two days: the most active work I’ve done in 6 months.

That all being said, I do have anxiety about Adriamycin and Cytoxan’s cumulative side effects. As I’ve been told to expect things might get worse before they get better. For me it’s pretty simple: I either feel bad, or I don’t. Thankfully right now, the good days outweigh the bad.

I am very, very grateful to be as healthy as I am, and thrilled to reassure my sisters in treatment that life can still go on.

A/C, Chemotherapy, Caitlin Marcoux, Breast Cancer Survivor, Mastectomy, new boobs

A/C infusion number one: August 21st, 2013

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As an aside…

I consider myself damn lucky to have a cool and innovative general contractor for a boyfriend. He’s really come in handy during this whole cancer thing. I could wax on and on about all the big expressions of support he’s made over the last 6 months, and all the little ways in which he’s made my life better, but for those of you who’ve been following my journey and are in active treatment yourselves, let me just mention the most recent idea he’s come up with which has given me some of the biggest sighs of relief since re-starting chemotherapy on August 21st: The Frozen Hat.

If you are in the process of loosing your hair (as I am for the second time this year) and suffering from an itchy, hot, irritated scalp, you need to try this at home. Take your two most favorite, preferably soft cotton hats and stick them in the freezer. You can put a plastic bag full of ice cubes or a plastic or jell cooler pack inside the hats, or  use whatever’s handy in the freezer: a bag of frozen peas for instance is perfect.

Once the hats are sufficiently cold and crispy: VOLA! Your own homemade Cold Cap. Place one hat on your head, and breath a sigh of relief. As soon as your hot head has cooled off one hat, you have another one waiting in the freezer to replace it with. Switch out as necessary. Enjoy.

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 {My Cancer Story: The Beginning}

(Making the Breast Decision)

(Life After the Knife)

{How to Talk to Someone with Cancer)

(Let’s be Friends)