Insomnia and Perseverance

Team Tasha Vinyasa

I wake up now, multiple times a night, usually soaked in sweat. Sometimes I wake at 1am, or 2am and go back to sleep, but typically I can’t. Or I don’t for hours and then I do; passing out just 30 to 45 minutes before my 5am alarm rings. I’m not complaining so much as stating the facts. I used to toss and turn, and roll around in bed, but now I know better. Now I get up and try to be productive. I try to think POSITIVE thoughts, and put them to good use. It doesn’t always work, but like yoga, it’s a practice.  This morning, I knew laying in bed any longer would do the opposite. The itchy, restless, burning sensations in my bones, the hyper-sensitiving and anxiety was impossible to quell.

I got up. It was the only option.positive thinking

I shifted to my side, and picked up my phone, mostly to see how many hour of sleep I had manage to collect,  when I noticed a steady stream of email notifications. “Congratulations” they said, “you have received another donation”…. In a rush of excitement I jumped out of bed and into my office.

I reached my $7,500 fundraising goal yesterday evening around 9pm, which in itself was hugely exciting, but over night – more donations came pouring in. $5, $25, $50, $100, and then – $1,000…

Amazing.

YSC Tour de Pink Fundraising progress

When I read the emails and checked the status of my fundraising page, tears welled up in my eyes. It’s been a tough week for me, personally, with the date of my hysterectomy and oophorectomy looming on the horizon, and I am just exhausted from the culmination of a SUP Yoga season fraught with equipment and scheduling issues, and parenting challenges, so it doesn’t take much to make me weepy these days. These tears, however, were tears of joy.
It makes me feel indescribably good to help others. To know that these donations for the Young Survivors Coalition, will help other young women, like myself, battling through the process of breast cancer treatment, makes me feel useful and connected to my cancer community, and gives me a deeper sense of purpose. The overnight donations have pushed me onto the fundraiser leaderboard, and much closer to the next fundraising goal of $10,000 then I ever thought I would get. I’m on such a roll now, I can’t help but set the bar even higher.

So I’m bumping my goal all the way up to $10k.

The purpose is two-fold: the money raised continues to be the primary objective, the campaign, however, is a personal project, and a much needed distraction. In three weeks, I am returning to MGH for more cancer-related surgery. I am anxious and scared. Because I am a rape and child abuse survivor, thinking about the bodily location of the surgery and the fact that I will be unconscious, on an O.R. table, with a team of strangers moving organs out my body through my vagina, makes my heart race.

I’m not sure, unless you have been victimized in the same way as I was, that it’s possible to understand the PTSD that is triggered by these thoughts of helplessness and exposure. I don’t know that you fear being sedated and strapped down to a table as much as I have, unless you too have been pinned down in the middle of the night, and had your legs spread apart.

#nevergiveup

rape, cancer, it doesn’t matter – we never give up.

I have tried to describe the psychological stressors, to my partner and friends that make this surgery so much scarier than my double mastectomy, but I’m not sure they relate, or understand. Some times it feels like I have been talking and writing about my personal struggles for so long now, that the significance of this particular chapter of my trauma, or the gravity of this operation, has diminished. Sometimes I get the feeling like their empathy has simply worn out. And you know what, I can’t really blame them. It’s been a long, painful narrative. I only hope it has also given others, who have gone through similar struggles, promise and encouragement t0 keep on keeping on. Because that’s what we do. We fall down, and we get back up.

So… back to fundraising it is.

Dear readers, if my cancer diaries have touched you, if you have been following my journey – the one that started in March 2013 – if I have inspired you in any way, please consider making a donation of any amount to my upcoming 200+ mile charity bike ride for young women with breast cancer. I need you. They need us. It is all one and the same.

Thank you for taking the time to hold some space for us cancer warriors and thank you for holding space for me.

~Caitlin

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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)

Warrior Won

N Magazine Feature

I am so grateful to N Magazine for this generous feature in the May 2015 edition. I feel very lucky to have had the opportunity to honor my fellow cancer warrior, Natasha Grosshans, in this very public, very special way. A big thank you to Katie Kaizer for all her beautiful photographs, and her always happy and very luminescent spirit.

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

Warrior Won, N Magazine, May 2015

the cancer club

Uterus by eReSaW

I thought that after they cut the port out of my chest, and the breast tissue out of my breasts, that it would be a long, long time before I had to go under the scalpel again. Hm…contrary to what I thought was the conclusion of my cancer story, this is not the case. As I’m starting to realize more and more, once you are part of the cancer club, you are a member for life.

Which is why after a suspicious pap, and a not-so-positive experience with a gynecologist on the Cape, I found back at the Cancer Center at Mass General Hospital a few days ago. If MGH’s Yawkee building is the cancer Club House, the 9th floor is like the Members Only area.  I can’t count how many times I’ve parked in the same parking garage, taken the same elevator up to the 9th floor, and hung a left to 9A. The only difference on Monday was that we turned right out of the elevator and went down the hall to 9E. I have to say, the breast cancer patients got the short end of the stick. The Gynecology Oncology waiting room is much nicer.

In any event, the reoccurring lesions on my cervix have given me reason to expand my oncology team. I now get to put my health in the hands of Dr. del Carmen, who’s got to be one of the coolest MDs I’ve ever met. And even though she put me through yet another uncomfortable exam, she made discussing the resection of yet another body part seem easy (well, easy-ish). She had clearly familiarized herself with my case, had already conferenced with both my breast surgeon and breast oncologist, and spoke to me with great care.

In about 5 more days we will have the pathology results we need to determine the type of hysterectomy I have to have and when I have to have it. If it looks like the unfriendly cells are quickly dividing, I will be looking at the inside of an O.R. this spring. If they are sluggish, I can put surgery off until the fall. Either way, I will soon be bidding my uterus adieu.

I’m not ready to write about the many feelings this prospect is stirring up, or the myriad of ways in which being a patient again is effecting my psyche. But I will. Eventually. For now, I’m trying my best to stay in the moment and recent win. Helen Keller said, “Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content”

Though it seems my members-only card has just been renewed, I realize now, it never really expired.

#nevergiveup

A beautiful departure

Team Tasha Vinyasa B&W group photo

Tasha was so excited. Her famous smile would light up every time I’d mention the event. You know the smile I’m talking about. The one that would force anyone in her general vicinity to smile back, even if they didn’t know what they were smiling about. Tasha’s energy was like that. She had generous bounds of contagious happiness.

From the moment we began working together I felt like we were sisters. It was an immediate bond. One that is forged in the initiation fires of cancer, but one that could also have developed without cancer’s help. I immediately felt like I could tell her anything. She had an curious mind and a hunger for experience and knowledge. She ate up anything I shared with her about my own experience with illness, and voraciously took in whatever yogic philosophy I brought to light.

Some times we saw each other several times a week. We’d practice basic yoga poses at the studio, or focus on restorative yoga and body work. Sometimes we went for coffee instead. Once I brought her to my house and I passed on all my medicinal tools for mitigating the side-effects of chemotherapy and she wouldn’t stop talking about how much she liked the 50s motif in my kitchen. It’s strange like that with cancer: in one breath we find ourselves talking about how to survive, in the next we’re talking about interior design. We trying to find balance in a world thrown up-sid-down by treatments and tests, protocols and procedures.

Tasha did a fantastic job at keeping one eye on the cancer ball, and one eye on the rest of her life. And instead of wallowing in the unfairness of the hand she’d been dealt, Tasha was fully present in the moment, and willing to engage with anyone asking for her attention.

When I first mentioned the idea of a class in her honor she looked as if I had invited her to the Oscars. I told her about the positive energy we could create as a collective whole and whereas a less open minded or mature young person might roll their eyes, she nodded enthusiastically. I knew right away she was picking up what I was laying down. She got it.

Back in December we thought there was a good chance Tasha might still be well enough to attend the event, but as we rolled into January we realized that was not longer the case. Technology came to the rescue though, and she and I got almost equally excited when we realized she’d be able to watch the class from the comfort of her own bed via Skype.

At various points in our relationship, I shared with Tasha small pieces of yoga’s ritualistic heritage. I taught her a few sanskrit words, told her a little bit about mantra (the repetition of a word or phrase with a focused intention) and shared with her a few ideas about dharma and karma. I gave her one of the malas (prayer beads) that had been gifted to me when I was sick, and she wore them at the hospital. These were little things, little tools, but I could tell they interested her.  So when I told her that for Team Tasha Vinyasa, my intention was to get everyone in attendance to chant mantra in her honor she was stoked.

My partner, Burr; always the creative production force behind my classes, created a giant, 80-foot aqua mala as a back drop for the event – and I shared with Tasha, photos of it’s creation. “Tell him I LOVE it” she said, when she saw a photo of Burr’s crew drilling holes in the oversized Christmas balls.

Team Tasha Vinyasa

The day of the event, Tasha was in and out of consciousness. She had gone to sleep on Thursday night, and slept through most of Friday morning. She woke up at some point in the middle of the day, for about 15 precious minutes, and her mother was able to show her a photo I had posted of Mary Michetti and I cutting hundreds of aqua ribbons. Again, she perked up and talked about how excited she was to watch the night unfold later on her laptop. Shortly after, Tasha said she need a nap, so that she could be up with us later.

And what an event it was. I have never been prouder of our community. 120 people poured into the Studio Theater at the Dreamland that night, many of whom had never done yoga before in their lives. I had promised after all, that it wouldn’t be hard.

Men and women, young, and old, humans with spiritual beliefs as different as the color of their hair. It was an incredible representation of our island. Clearly, people from all different pockets of our community had been touched by Tasha’s story and wanted to be a part of sending her love.

Team Tasha Vinyasa

I can’t say that I kept my promise. At some point during the practice it occurred to me that life is so beautiful, but really, really challenging. So… I turned up the heat a little. I couldn’t help myself. I thought of how gracefully Tasha had navigated pneumothorax, chemotherapy, plural taps, and port implants. I thought about what a miracle it was that we were all there, with fully functional bodies with the ability to do challenging things. I remembered how hard it was for me personally when cancer kept me from my own physical identity… and I remembered a conversation I had with Tasha back in November.

She had expressed her frustrations to me then, at watching her muscles atrophy. Remembering all too well what that felt like, all I could do was empathize. I didn’t tell her how strong she still was, or try to deny what was blatantly obvious to both of us. But I did promise her that I would bust my ass physically so that she wouldn’t have to. A brilliant smile, of course, flashed across her face.

So in that vein, I invited students that night, to hold poses longer, to go deeper, to do it for Tasha – who so badly wanted to, but could not. To feel that solar burn in your thighs, what a privilege, I said. Some people laughed. Some people groaned. But you know what? They all held it together. The 60 year olds and the 5 years olds, and every one in between. They put in an effort, perhaps like never before, because they wanted to do it for Tasha.

Team Tasha Vinyasa

That night I witnessed our island come together for Tasha in a way I’ve never seen before. The studio was packed from wall to wall with bodies focused solely on one purposed: to open their hearts to Tasha. Collectively these diverse individuals created one huge mass of love.  Tasha’s family gathered closely around her, inside her newly finished aqua bedroom sanctuary, and watched the entire event from start to end. Tasha’s mother Tina, sister Allyssa, brother Timmy, step-dad Brendan, aunt Lisa, cousin Heather and best friends from California Sydney and Micha, snuggled around Tasha like a blanket. And Burr, with laptop in hand, ran from one corner of the studio to the other, doing his best to capture the depth of the magic being created for them to see.

Team Tasha Vinyasa

Team Tasha Vinyasa

Even though she never opened her eyes again, I am positive Tasha heard every prayer this community offered and felt every ounce of love we generated. When my phone rang 4 hours later, I knew instantly that Tasha had left her body, and I felt as sure as I’ve ever felt anything that we helped her transition and guided her to the light.

Team Tasha Vinyasa

Tasha often thanked me for being a part of her life. But honestly, it is I who should be thanking Tasha. She has taught me so much about my own capacity to love and in a time when the world seems bitter and cruel, she has reinforced my belief in mankind’s ability to love one another.

Team Tasha Vinyasa

 

I fell in love with Tasha the way mothers fall in love with their babies the first moment their skin makes contact. Instantaneously. I think she had that affect on a lot of people.

And right now, in this very moment, Tasha is teaching every one of us the power of community, for even in death, her spirit has united an entire island.

#teamtasha

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Below are a few more photographs from Team Tasha Vinyasa Electric Flow, taken by my friend and very talented photographer, Katie Kaizer. In her words, Katie says “I am so thankful to be part of this community and to photograph such a moving and emotional evening. I am in awe of the energy that forms throughout the night and holds everyone together offering comfort and understanding. The entire room was radiating peace and love as we all sent prayers to Natasha and her family.”

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

TeamTasha_035_KatieKaizerPhotography

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Team Tasha Vinyasa

Many thanks to Floyd Kellogg and Pete Ahern for donating their time. We love this town.

Every heart has value

Practice and all is coming…

Speak from the Heart

That’s what Shri Pattabhi Jois said anyway… and I think much of the time, he’s right.

Public speaking for example. I used to be deathly afraid of it. I remember dreading giving presentations in grade school and speeches in middle school. In high school and college, it would often take me minutes to get up the courage to raise my hand to respond to a question – even thought I was positive I had the answer.

As someone who speaks in front of a class on a daily basis, it’s gotten a little easier over the years.  Lucky for me I get to practice a lot. I also try to pay close attention when listening to an inspiring orator, to the ways in which they light up a room. Usually, for me, it comes down to authenticity. If a speaker is talking about something they feel passionately about, their enthusiasm is contagious. You can feel it come through their bodies through their words. Their energy fills up the space around them and you find yourself leaning into the feeling of their voice. It doesn’t matter if they are speaking to a small group of students or an stadium packed with spectators, everyone feels held in captivation.

That is the kind of speaker I aspire to be. I don’t think I deliver on this level………. yet. But I’m learning. And I’m practicing. And I’m grateful to have students and followers, organizations and studios that give me the chance to practice this part of my craft.

I’ve learned that the most effective speaking comes straight from the heart, that no amount of organized note cards can substitute the integrity of direct, honest communication. To that end, I don’t force myself to speak about things I haven’t experienced first hand or explored on a personal level. I only tackle the philosophical tenants of traditional yoga if I have a personal anecdote which makes their application feel relevant to me – and so hopefully to my students.Speak from the Heart

It’s taken me living through an overflowing cup of human suffering to feel like I have any perspective of value to share with others. Some might think that for a young person I’ve had more than my fair share of trauma, but I choose to think that I’ve only given what I can handle. That perhaps it is part of my karma to live though this pain so as to better serve others. In any event, I’ve survived an abusive grandfather, the death of a husband, a divorce from another, the potentially terminal diagnosis of a parent, and my own plight with aggressive breast cancer. These are some of the things that have shaped me into the person I am today.

I’m certainly not saying that only people who have endured personal drama and trauma are the only ones who should be given a microphone. Nor am I saying that the sunny side of life: the love and laughter, successes and triumphs don’t have their own significant influence on the people we become, but I do believe there is a certain type of wisdom forged in the fires of pain. There is a deeper awareness the universal consciousness that binds us all. We begin to see that our hurt is not so different from our neighbor’s hurt. We start to feel our humanity as same, not singular. Through suffering, our compassion is amplified.

Be In Love with Your Life

While it’s true that some individuals are born into this life with clear purpose and passion, for many of us it takes a life-altering event to find the gratitude and mindfullness we need to lead an exemplary life. Once we surmount the insurmountable our hindsight is sharpened and we can look towards the future with clarity. We realize the value of being totally in love with our lives.

It was a privilege and an honer to speak at the Nantucket Historical Association yesterday. I enjoyed illustrating some basic yogic concepts with a few personal stories. I hope that my enthusiasm for my craft was evidenced both in my words and through the energy I tried to bring into the room.  I know my delivery was a little rushed. That I stumbled over myself a few times, and that there were several moments when I simply could not find the words I was searching for. But like one of the fathers of our modern day yoga moment says, “practice and all is coming”.

Food for Thought at the NHA

I promise to keep working on communicating, with authenticity, the things that feel personally and universally inspiring to me. In the mean time you may want to check out these more experienced and inspiring speakers on yoga, spirituality, creative expression, love and living an exemplary, miraculous life:

Seane Corn on an Enlightened Planet

MC Yogi on Yoga at TEDx

Michael Stone on a Deeper Materialism

Shiva Rea at Burning Man on the Origins of Movement

get off my chest

It’s been a rough couple of weeks. I’ve lost four friends to cancer within just the last 10 days.

Although we had three different types of breast cancer, Nora, Malaya and I were all diagnosed around the same time. I didn’t know them in my Life Before Cancer, but we found each other on FaceBook and through my blog, and they became some of the most important people in my personal battle.

Nora and I became friends in July of 2013. She reached out to me just before my mastectomy, and from that point on became a frequent visitor to my FB page. We dedicated our yoga practices to one another, sent each other care packages, and offered up support at the most critical times. Nora often reposted my cancer articles and in this way pointed a lot of other survivors in my direction. Nora and I had very similar treatment paths… and supported one another through out chemo, surgery and recovery. We both had cancers that were Her2Nu positive, and had to have infusion upon infusion of Herceptin: a drug that for most people does not present side effects, but for some reason caused us both significant discomfort. We comforted each other through social media and emails, and bonded over the similarities of our suffering and the lessons we were uncovering within.

See every challenge as an opportunity for personal growth.

May we see every challenge as an opportunity for personal growth.

In addition to similar chemotherapy regiments, Nora too had a mastectomy – and was to my knowledge considered NED (no evidence of disease) when they removed her tumor. But that is where our stories diverge. Nora had radiation. I did not. Then at some point this year, Nora’s cancer came back, and metastasized. Mine has not. I don’t know how, or why, nor can I come up with any scientific explanation as to why I remain and she is gone. It is sad. It is haunting. And it hurts.

However, knowing Nora, I’m sure she was just as graceful in dying as she was in living, and found meaning, faith and peace in the process of letting go. Nora was a kind and beautiful woman. A mother, a grandmother, and a fellow yogini,  Nora was always positive – no matter what. The graphic above was the last profile picture she chose to put up on her FaceBook page. It really says it all.

Angel, Nora Boczar

Angel, Nora Boczar

 

Malaya and I too became friends through FaceBook. When we connected, she was already Stage IV. Having only Stage II myself, I initially felt self-conscious talking with her about my prognosis and treatment plan. While I was a candidate for certain proven-to-be-effective drugs, Malaya’s illness had already entered into uncharted territory. While I had a flow chart with scheduled infusions, varying dosages of chemo proven to work on different aspects of my disease, a surgical date and and discharge date, Malaya was being juggled from hospital to hospital, clinical trial to clinical trial, and for her, there was no end in sight.

All that being said, Malaya’s compassion knew no bounds. She and I would speak for hours on the phone about all kinds of things only sisters in the trenches could understand… When I couldn’t relate to my non-diseased friends, Malaya would make time to chat about the challenges of being a young woman with a life-threatening illness. She told me to get over my comparisons, and reminded me that pain is pain. I eventually conceded that she was right and I learned to have compassion for my own scary ordeal. Even though Malaya would talk about the shitty, cruelty of cancer for as long as I wanted, she never seemed to feel bad for herself.  She continued to live her life to the fullest. A former Roller Derby Girl, Malaya bravely moved forward. She married a childhood sweetheart, and started a fiery blog called Hip Checking Cancer, and to me she was a superhuman example of how to carry ones self in difficult times. (to illustrate, she was diagnosed during Hurricane Sandy, in a hospital that was quickly going under water, even then she seemed to captain the ship). To me she navigated her illness with the perfect balance of truthfulness, tenacity and grace. In August she wrote “I’m sick of this daily battle. I’m sick of being a warrior. I want a cure. I want a future. I want to live. I want a damn glass of sangria. ” She’s raw, pissy, honest, and yet she’s still funny. How many of us can relate.

Malaya Kelly aka Salmour Doll

Bad Ass: Malaya Kelly aka Salmour Doll

Malaya’s 7th treatment plan began to fail in August. I didn’t know, because I hadn’t checked in with her in quite some time. Focused mostly on myself; moving my family, starting my new business and being a mom, I was also a shitty friend. So like Nora’s, Malaya’s passing on October 18th hit me like a direct blow to the heart. I wish I had checked in. I wish I had had the chance to speak with her on the phone one more time. I wish I could have said good-bye.

Three days ago, on October 25th, I woke up to more heartbreaking news. A woman I recently met on the  Young Women’s Survival Coalition‘s Tour de Pink charity bike ride named Kara Guzzetti had passed away the night before.

Kara and her charismatic boyfriend Chris were two of the first people I met on the 200+ mile YSCTDP. I remember being extremely impressed by the way she brave showed off her bald head, and overwhelmed by how fiercely up front she was about her Stage IV terminal diagnosis. Despite a body that had been through hell, she got up every morning and rode as many miles of the grueling trip as she could. Kara had big smiles and endless amounts of good cheer. She inspired everyone around her. It was just a little more than a month after that amazing ride that she passed. Though I barely knew her, I will forever be inspired by Kara.

Kara Guzzetti, riding at the 2014 Tour de Pink, and an inspiration to all

Kara Guzzetti, riding at the 2014 Tour de Pink, and an inspiration to all.

I couldn’t help but think of all three of these inspiring ladies, when yesterday I attended my 2nd funeral in 2 weeks. As I sat listening to other members of our close and loving Nantucket community eulogize our friend Scotty, I felt like all these spirits were there together. I felt like perhaps they were all at peace, all pain-free, each of them the better off in a way for having faced cancer and having lived so fully in their dying to have inspired so many.

Scotty passed away after a 2+ year long battle with kapok’s sarcoma of the pancreas. She was my personal trainer for a time, but someone who shared the space where I have worked for the last 6 years of my life. There were many other ways in which Scotty touched my life, but most profoundly she helped guide me into a place of deep gratitude for my illness (which is a tall fucking order), and for everything yet still flourishing in my life. I didn’t know I had breast cancer at the time of Scotty’s diagnosis, but I had it. When three months after the Yogathon we put together for Scotty at the Yoga Room, I got my own potentially terminal diagnosis, it was Scotty whom I immediately wanted to see.

Scotty and I started going to the cancer support group offered by Palliative & Support Care of Nantucket, and I looked forward to seeing her there. She was always so eloquent, not only about the things she felt grateful for but about that things that were causing her pain. I think it was her truthfulness that drew me in the most. That and the resolve she had about facing death straight on. It was as clear as day -you could see it in her eyes. Being around her made me feel braver.

A few times I ran into Scotty at the Green, just randomly. And all we’d do was hug. We didn’t even need to talk. Some times she’d start crying first, some times I would. It’s like that with cancer patients – words need not be spoken.

Me; 2 1/2 months into chemotherapy. Scotty bravely forging ahead without treatment.

Me; 2 1/2 months into chemotherapy. Scotty bravely forging ahead without treatment early 2013.

It’s a very strange thing: to have outlived a large part of my cancer community. But it stands to reason, that when you surround yourself with people who have long-term and terminal illnesses, death on a larger than normal scale is to be expected. Yet as sad as cancer can make and has made me feel (especially this week), the prevailing feeling I take away from all these experiences is one of great, great privilege. In my almost 38 years on this planet, it has been cancer that has brought the most inspiring people into my life. To have known so many, many inspiring people in such a short amount of time is an honor.

Nora was right, “every experience, no matter how how bad it seems hold within it a blessing of some kind.” All we have to do is find it.

#nevergiveup

My Tour de Pink

I’m a little nervous, but…I’ve slayed much bigger dragons in the last 2 years. Even so, in just a few days I’ll be on yet another slightly pause-worthy, solo adventure. And I get to check another first off my list. This time that incorporates a few different things: my very first time riding my road bike off the island of Nantucket, my first charity ride, my first time riding in a group of 100+, my first time riding with total strangers and my first time doing more than 50 miles in a day.

I’m amped.

I’m ready.

and I’m HEALTHY!

As many of you know, this time last year I was in the fight of my life, on bed rest and healing from a radical double mastectomy. This summer, I am thrilled to report, life is looking very different. Having recently wrapped up 16 months of breast cancer treatment in July, I am no longer a patient, but a Breast Cancer SURVIVOR. On September 19th -20th I am riding in my first multi-day charity bike event: The YSC Tour de Pink, a 200 mile bike ride for young women with breast cancer. The YSC, Young Survivor’s Coalition* offers resources, connections and outreach so women feel supported, empowered and hopeful. 

Considering the year I’ve had, and my newbie status as a cyclist, I anticipate this ride is going to be a challenge, but I know that the strength I have cultivated during my battle, the strength you, my community, have given me to beat back this disease will get me to the finish line. With the motto “Ride. Support. Inspire”, YSC Tour de Pink is much more than just a ride, it’s a chance to honor survivors, raise awareness and support important programs for young women with breast cancer.

Tour de Pink

I signed up to ride the Tour de Pink only 6 weeks ago- and in that short amount of time my friends and family, and even people who don’t even know me have raised $3,888.00 – an overwhelming show of support considering how much fundraising is done here on Nantucket during the summer months, and how many deserving causes there are to donate to. I feel so blessed and yet again, so grateful to live here, to have the community we have and to be a part of something so important with the help of those around me.

I am dedicating my YSC ride to my friend, breast cancer mentor and long time Nantucketer, Claudia Kronenberg Douty, who also had triple positive invasive breast cancer and passed away all too soon, earlier this year.

I would like to thank the following people who made donations to my Tour de Pink:

  • John Osborne & Family
  • Emily Molden
  • Chris Collins
  • Burr Tupper
  • Sarah Montgomery
  • Kimberly and Marina Cassano
  • Terry Keible
  • Julie Hilberg Hunt
  • Jennifer Kaplan
  • Kathy Lipschuts
  • Burton Balkind
  • Elisa Allen
  • my Mom & Dad
  • Caroline Furgeson
  • Ani Kasten
  • Gretchen Cooney
  • Victoria Macomber
  • Jillian Fraker
  • Kim Reilly
  • Barbara Rosen
  • Georgia Raysman
  • Audrey Stery
  • Larisa Foreman
  • Melissa Murphy & Family
  • Tracy Cullinane
  • Alison Gorham
  • John Hunt & Palma Puzzoli
  • Lisa LaFrance
  • Jake & Alisa Allegrini
  • Juan Uribe
  • Mark Loader
  • Patrick Topham
  • Laura Snyder
  • Melissa Swim
  • Georgina Sharman
  • Christen & Andrew deLa Rochelle
  • Ann Marie Hunter
  • Lisa Botticelli
  • and of course the anonymous donors… I know who some of you are 😉

I just picked up my bike from Young’s, where they kindly squeezed me in for a last minute tune-up, and I’m in the middle of packing my bike bag. I’ve gone over my check list a dozen times already, and I’ll go over it a few more times before I go to bed. My excitement is visible in the flush on my cheeks. Although the ride itself doesn’t commence for a few more days, I leave the island tomorrow and head off to Boston. On Thursday morning I’ll make the 7 hour trek from Boston to my friend’s house in PA and pick up my Tour de Pink packet in Philadelphia on the way. We hit the road 9am on Friday morning…

Follow me and my ride:

Live. Love. Ride.

~Caitlin

 

Tour de Pink

#nevergiveup

 

*The YSC is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful. With an interactive website and almost 30 affiliates across the United States, it is YSC’s goal that no young woman should be left to fight breast cancer alone.

 

Why I ride and how surviving cancer is easier on a bike

I love cycling

“Cyclers see considerable more of this beautiful world than any other class of citizens. A good bicycle, well applied, will cure most ills this flesh is heir to.” ~ Dr. K. K. Doty

Neophyte. Rookie. Novice. Beginner. Green Horn. These are all terms you could use to describe me and my current place in the cycling community. But despite the fact that I am the newcomer with the shaky handlebars, and inconsistent pedal stroke, I am having the time of my life. In fact, I have never felt so alive.

I’m sure that it a lot to do with recently overcoming invasive breast cancer and wrapping up 16 months of chemotherapy. I literally have a new lease on life and I’m so amped to live this one to the fullest.

For the record, I have no problem admitting I have no real place keeping company with the stallion-like riders I’ve been chasing. But so far anyway, my ego hasn’t gotten the better of me, and Im well satisfied with my view from the rear. Every moment I spend in the saddle is a moment I’m not in a hospital. Every time I feel my heart rate rise I smile knowing it’s because I am physically exerting myself and not because I’m having a chemo-induced panic attack. I don’t care if I ever win a bike race, because I’ve already beat the biggest competition I’ll ever have to face. Sure it would be nice, but right now I’m just happy to be here.

So many things change after a cancer diagnosis. But one of the things you realize right away, is that your life will forever be divided into two distinct chapters: Life Before Cancer and Life After Cancer. I’ve heard over and over again that many cancer survivors go onto change their lives radically when they’ve overcome the disease. Some survivors totally rework their priorities; quit day jobs to spend all their time with their families, jump out of planes, climb crazy mountains, leave their relationships, get divorced, or move to a foreign country.

Now I was pretty happy with my life before I got diagnosed, so I’m not looking to make any radical changes – BUT I will say this, the fear that used to hold me back from doing things that intimidated me is gone. Having looked at death in the face and come out the other side, there’s not a lot I’m afraid of anymore. I have however found myself wanting to make up for lost time, to push my body harder than ever before, to test my limits, to live bigger, louder, and stronger. I have a voracious appetite and throw myself into things with a gusto I think I lacked in the time before cancer. One of the ways I’ve been doing this has been on my bike, 4-6 mornings a week, since the beginning of June.

I’ve caught the cycling bug the way I see some of my students catch the yoga bug… I think about it constantly. I read about riding. I dream about riding. I feel agitated and incomplete on my rest days. Yoga and I have been married a long time. We will continue our mostly monogamous and steadfast relationship until death do us part. However, cycling has showed up this year out of no where, and all of a sudden I have a most unexpected and tantalizing lover on the side. Admittedly, I’m a little obsessed, as one is when a new passion is ignited. But if you have to be obsessed about something, I figure this is a pretty healthy obsession.

Nantucket Velo

The back story to the cycling piece is this: I lived in Chicago from 2002 until 2007. During that time I was madly in love with a man whom I would ultimately marry just 8 weeks before he would die of a rare and shockingly brutal kind of lung cancer. Ironically during our time together Aaron constantly pressured me to get on a road bike. He loved it and rode all over Chicago on a wickedly fast Bianchi. Even the thought of riding though the city streets on a tiny, delicate looking frame with spaghetti thin wheels terrified me. And I refused.  He eventually bought be a Marin Muirwoods hybrid bike, which was basically a road bike but had a steal mountain-bike like frame and wheels that were slightly wider than those on his. It was a manipulative gift, but a beautiful one, and over time, I caved to the guilt he laid on in heavy doses.

It was right around the time I finally started tentatively riding the bike, that we found out Aaron had terminal cancer. He was gone just 2 months later. Everything after that got really blurry for me. I was 27, I was devastated. I was a widow. I put the bike down and didn’t ride it again until I moved home to Nantucket in 2007, and even then just looking at the Marin brought up such pain and loss, I barely rode it.

In another ironic twist, I got hooked on spinning just a few months before my own cancer diagnosis. I’d often take the 5:30am spin class at the NC+F studio, and then head over to the Green for a post-workout coffee. It was Jason Bridges, who started suggesting I take all my spinning energy and put it on the road. No way, I’d think to myself. That shit is scary.

But wouldn’t you know that in December 2012, just 3 months before my life would be turned up-side-down by a needle biopsy, a beautiful titanium LeMond road bike arrived. A gift from my partner – who knew how much I was enjoying spinning, and just couldn’t help but pick up where Aaron had left off.

The gift simultaneously thrilled and freaked me out. Luckily for me, I wouldn’t have to test drive my new steed for quite a while. My needle biopsy revealed an aggressive triple-positive ductal carcinoma, and subsequent MRIs showed that the cancer had spread throughout 3/4th of my entire right breast. My breast surgeon was saying things like “we’ll do everything we can to save your life”… I had an oncologist asking me things like did I want to freeze my eggs in case we had to remove my ovaries and uterus. Someone stuck a huge fucking needle full of radioactive dye into both my breasts and told me it would feel like a bee sting (clearly she had never had the procedure herself). The bike starred tauntingly at me from our enclosed porch while I threw up into a plastic bowl and kept swapping out ice packs on my itchy, hot, bald scalp.

I made a vow to myself, that if I beat cancer, I would get on that bike and RIDE it. I’m not sure if I was bargaining with God or with Aaron, but I also vowed that if I came out the other side, I would even race it. So in November of 2013, when I had gotten over the worst part of my treatment (Taxol, A/C and the double mastectomy) I realized that I was going to have to make good on my promises.

“The best rides are the ones where you bite off much more than you can chew, and live through it.” ~ Doug Bradbury

My partner and I had thrown around the idea of forming an Iron Teams Relay team, an annual race here on Nantucket that has a number of different legs, including a bike leg, but it had seemed like theoretical banter at the time. Once it started to look more like a reality, I wasn’t sure what was more frightening, cancer or riding in the Iron Teams.

I took the LeMond out for the first time on the 15th of November. I had no hair, no energy, certainly no cycling apparel, and felt like a big bald idiot as I awkwardly tried shifting up and down on the completely foreign apparatus. It felt very unstable, and scary to be clipped into something that moved in a forward trajectory, but part of me loved it right away.

November 15th, 2013: First time on a road bike.

A little post ride yoga selfie. November 15th, 2013: First time on a road bike.

Somehow between endless infusions and visits to Boston to see my oncologist, the winter flew by, and with spring arrived cycling season. My fear of road biking was dissipated by a couple of dear friends who took the time to explain the rules of the road, and in May took me out a few times at a pace I could handle. After a year and half of treatments, my energy level was at an all time low. My lungs were sluggish. My legs felt like they were moving through quick sand and my heart rate skyrocketed almost as soon as I left my house. The first time I did the Polpis-Sconset Loop with triathlete, friend and yoga student, Eddie Roberts, we went around 12mph.

Paint probably dries faster.

Even so, it didn’t matter. I was hooked. While riding I felt tingly from head to toe. Any speed I went was still faster than no speed at all, and faster still then the snails pace which I had averaged walking anxiously through the hallways of the Mass General Cancer ward. Riding made my entire body buzz. Riding made me feel alive in ways I’m not sure I’ve ever felt. And most importantly, it made returning to Life After Cancer seem like a tangible reality.

“Ride as much or as little, or as long or as short as you feel. But ride.” ~ Eddy Merckx

By June, I started riding 2-3 times a week: the most cardiovascular training I’ve ever done in my entire life. As far as training goes, it’s not much. But I had to start building a base if I was going to ride the bike leg of the Iron Teams Relay as promised. The goal was not win, the goal was simply to finish. I wanted my 4 year old son Griffin to see me speed down the road on my black and yellow LeMond.  I wanted him to see that the days of watching his mommy lay on the couch, too weak to play were over.

 

Iron Teams Relay: June 25th, 2014

Proudly showing off my “Kick Cancer” kit at the Iron Teams Relay: June 25th, 2014

Iron Teams Relay (photo by Shawn Monaco)

With Griffin at the end of the bike leg. Photo by Shawn Monaco

By the 16th of July, which was my last of 31 chemotherapy infusions, I had started to ride with the 6am Nantucket Velo group fairly regularly. I didn’t and still don’t often hold onto the group for long, but was happy just to be welcomed into the fold. From time to time I would be offered technical tips, or motivational aphorisms. New friends started pushing me to hold on through the “hills” of Tom Nevers, or get on somebody’s back wheel to practice drafting. I watched in absolute AMAZEMENT as my speed average increased from 12mph in May to 19mph in July.

Now some people have told me that stats and data aren’t important, and that cycling is more about how your body feels than the speed you ride or the miles you put in. But cancer patients are obsessed with numbers: blood counts and temperatures dictate whether or not an infusion can be administered. The number of days are counted  before we have to go back into the hospital and start the hell that is chemotherapy all over again. We count the number of days we throw up and the number of times we have to go in for intravenous hydration. I even counted the number of episodes I could watch of Scandal in a row before nodding out while doped up on morphine. So for me keeping track of my speed and milage has been something that I get great pleasure from. Every piece of data reminds me how alive I am instead of how sick I am (or was). Of course I pay attention to how my body feels, that’s an integral part of being a yogi, but I don’t think anything’s wrong with tracking progress. In fact, as a cancer survivor, I feel liberated by these kinds of numbers not confined by them.

On July 24th I competed in the Nantucket Hero Triathlon, on a team with Simon Shurey, who’s mother too has been battling breast cancer. We named our team FCTIAH aka Fuck Cancer There is Always Hope. I’m not sure I’ve ever been so nervous in all my life, but it was awesome. It was so much fun being on a team with Simon, who has always been so encouraging and positive whenever I see him, and my friend Laura, who had been on my Iron Teams Relay team.

In no small part because of this blog, many people who were either competing or spectating knew my cancer story and it felt like hundreds of people were rooting for me. Race Director, Jamie Raney, was over the top supportive of me and my decision to participate, and even publicly acknowledged my fight during the pre-event meeting. The race was on a Sunday. I had completed my last chemo on that Wednesday, just 4 days earlier. On that 31st and final infusion I felt like I had finally crossed the finish line of a very, very long and traumatic race. As I sprinted in at the end of Triathlon bike leg, the victory of crossing that finish line truly settled in.

 

 

Team FCTIAH at the Nantucket Hero Tri

Team FCTIAH at the Nantucket Hero Tri

Tomorrow I am racing in the Tour de Loop, a local Nantucket bike race (my first ever) that’s been around for a number of years. I have no illusions of grander or expectations to ride any faster than my personal best. There are a few riders I know I can match cadence with, and I’ll be happy for their companionship. Yes, I am the newbie. I am the one trying her damnedest to conquer her spazzy front wheel. I am the one who, just this morning, gripped her brakes dangerously when  assaulted by a piece of road kill and incited the ire of one of the velo’s senior riders (so sorry). But I’m also the happiest person on the road. That I know for sure.

Thank you Edward Roberts, Emily Molden, Jake Allegrini, Jason Bridges, Mike Allen, Simon Shurey, Mary Ellen Pender, Criss Troast, Jeff Shapiro, Michael Alpert, Seth Hatch, Shawn Monaco and the rest of the men and women who’ve allowed me to tag along this summer.

#nevergiveup

 

inspirational bike quotes

One Year Cancerversary

(photo: Larisa Forman)

Healing Breast Cancer (photo: Larisa Forman)

Dates are important to people with long-term illness: we celebrate them with a vengeance. We celebrate everything actually – because every moment we’re still here is a fucking party. Harrowing and victorious moments alike are crystalized into milestones, because each one reminds us that we’re not dead yet. Pain and pleasure are like sugar and salt – two sides of the same living and breathing, sensuous world.

We remember the first time we told someone we had cancer with the same clarity we remember the first time we told someone we’d been accepted into college. We remember the first time we made love as a cancer patient the same way we remember loosing our virginity. We remember the first chemotherapy infusion and the first time we threw up. We remember the first time our white blood cell count dropped dangerously low and we were declared neutropenic. But in addition to all the bumps in the road, we remember and celebrate all the hurdles we’ve cleared, and every single finish line we’ve crossed: first round of chemo completed: check. Second round of chemo completed: check. Tumor removed: check. Adjunctive chemotherapy completed: check. First anniversary of diagnosis: check. And then the big ones: The one year anniversary of the cancer’s removal, and the even bigger one: the second year anniversary of the cancer’s removal, and then the biggest one: the 5 year anniversary of the cancer’s removal.

Maybe it seems like a lot of hoopla. Is that really a word? Maybe it seems ceremonial overkill. But if you’re part of this tribe, if you’ve ever taken a trip to Cancerland, you know how important these annual markers are.

Today is the one year anniversary of my mastectomy; my cancer’s removal. That means that for one year I have been N.E.D. (No Evidence of Disease). If I can make it to July 25th, 2015 without a reoccurrence, I will be 80% likely to beat this damn disease entirely. 80%. That’s a pretty big deal. So I know we just made a big deal about how I finally, after 16 months and 31 infusions, I finished chemotherapy – but to me, this is an even bigger deal. I don’t need a party, or a big display of public support… I just need to share this moment with you – and with my fellow breast cancer sisters, and celebrate in my own little way.

This morning I went for a ride with our Nantucket cycling group. It was my 4th ride this week. And even though I know they slowed down significantly for me, I hung on through the whole ride, and averaged a personal best speed. That to me is the party. The ongoing celebration of life. The fight. The victory. The triumph.

This time last year I was on an operating table at Mass General Hospital. Dr. Michelle Specht was removing my tumor, the invasive cancer that covered 3/4th of my breast, and taking the other one off proactively. My plastic surgeon was about to surgically place two silicon implants into my chest. I hand needles in my arms and tubes draining out my sides.  I wasn’t sure when I woke up if I would still have my own nipples. We didn’t know how many of my lymph nodes would be cancerous. We didn’t really know how well I had respond to chemotherapy. We didn’t know that a year later, I would be riding with a pack of highly driven cyclists. We didn’t know that I would win.

Tell me, what is it you plan to do
with your one wild and precious life?

~Mary Oliver.

Nantucket Triathlon: Hero Tri

Nantucket Triathlon

I won’t be teaching my usual Sunday Sadhana Vinyasa Flow class tomorrow at The Yoga Room. Instead I am competing in the 6th annual Nantucket Triathlon as part of a relay team. Not that having had chemo this week, and only getting on my bike one in the last 7 days makes me much of a competitor. But hey, it’s not about winning – for me anyway – it’s about FINISHING. And this week in particular is all about celebrating the FINISH LINE. Maybe, maybe, next year it’ll be about something more. 😉

heronantucket.com