HeartCore Flow: January 26th 2014

Sunday, 2-4pm
Eyes of the World 
Providence, RI.
 
HeartCore Flow

Open your heart and ignite your core with this fluid sequence of backbends, forward folds and heartfire core work. Explore the wisdom of your innermost guru, challenge yourself to soften up against your edge and stoke the flames of your creativity. Pranayama, yogasana and meditation will be used to cultivate agni (fire) and uncover personal satya (truth.)

$35 by Fri Jan 24
$45 by Jan 25

 

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.

 ###

{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

###

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.

###

 {My Cancer Story: The Beginning}

(Making the Breast Decision)

(Life After the Knife)

{How to Talk to Someone with Cancer)

(Let’s be Friends)

Life After the Knife: Keep Your Head Up

{ graphic / nudity}
Originally Published by RebelleSociety.com on August 12th, 2013
 

What happened after the knife?

 
Life After the Knife by Caitlin Marcoux, Cancer Jedi

photo by Robert Kricivich

Eight months doesn’t seem like a lot to exchange for the chance at living another 50 years, so I’m trying to be patient.

For me, the past 2 weeks since my mastectomy have been packed with a myriad of  emotional transitions and physical alterations and it’s been tough to stay attentive. Despite my lack of physical activity, all the emotional flux I’ve been navigating has turned slow days into full days, and I find myself feeling like the last 2 weeks have both flow by and crawled along at a snail’s pace.

It’s hard to believe that 2 weeks ago I had a body of disease and today I am making big strides towards a full recovery.

According to everyone, my double mastectomy and immediate reconstruction was a great success. With the guidance of my savvy oncologist, the previous 3 months worth of chemotherapy shrank my tumor and all of it’s many calcifications and satellite spots of carcinoma to an almost undetectable presence. My breast surgeon was then able to remove all the invasive cancer from my chest, get clean margins and perform what is called a nipple and skin-sparring mastectomy.

What is a skin-sparring mastectomy?

For those of you who are unfamiliar with this process, as I was before confronting it, this kind of mastectomy involves the removal of all of the patient’s breast tissue, but preserves a woman’s own nipples and surrounding skin. While nipple-sparring is said to alleviate  some of the emotional turmoil a woman will feel following a mastectomy, sadly she will never regain sensation in her nipples. Generally speaking the pain level following this type of mastectomy is greater than that of a simple or total mastectomy, but if it were possible, I was prepared to pay that price should I be able to keep more of myself self intact.

It was originally said that I was not a candidate for this surgery given the extensive and aggressive nature of my cancer, so going into my operation, I wasn’t sure what outcome to expect. My team had prepared me for a couple of possibilities: single stage reconstruction with implants, or tissue expanders which would help rebuild my breast over several months should everything need to be removed. I really had no idea if I was going to wake up with tissue expanders, flat chested or fully reconstructed with all my own bits and pieces.

Needless to say, I was scared.

I arrived at Mass General Hospital at 5:30 am with my teammates by my side. Both my partner Burr and friend Elisa helped shepherd me through not one, but two preoperative check points, and as we got closer to the surgical time of 7:00 my anxiety was mitigated only by a dose of Ativan.

The fear kicked in big time when Burr and I were greeted by my anesthesiologists who explained to me in detail the process of getting a PVB, or paravertebral block. The explanation, though sound, did nothing to make me feel better.

“PVB is an advanced nerve block technique, in which long-acting local anesthetic is injected below the muscles lateral to the spine and adjacent to the spinal nerves. Ultrasound guidance ensures correct needle placement, and the injected local anesthetic provides a band of numbness around the chest and breast area.” 

Ultrasound guidance or not, I was terrified by the thought of someone sticking a needle in my back. After all, I am the girl who’s primary motivation to birth at home was to avoiding an epidural. Put another way, I’d take childbirth over a needle in my back any day.

The explanation seemed to continue on for hours. The radiologists’ voices seemed distant and distorted, as if the words came out of their mouths in slow motion. Then, all of a sudden, they  disappeared. They went to check on the O.R. and the time space continuum swallowed me up. All I could hear was the thumping of my heart and the loud rush of adrenaline coursing through my veins.

Be here now, said a voice from somewhere deep inside my mind.

It occurred to me right then and there, that staying present has been exactly what I’ve been hoping to convey in my yoga classes all year. Crazy pre-surgical fear and all, this was just another golden opportunity to put my money where my mouth was, and be.

Be here now, the voice said again.

I fell back on my mindfulness techniques. I focused on the feel of the loose hospital garment draped over my shoulders, the sounds around me, and the cold bed beneath my seat. I remembered Thich Nhat Hahn’s gatha:

Breathing in I calm.

Breathing out I smile.

Dwelling in the present moment

It is a precious moment.

Pre-Op Mastectomy and Reconstruction. Caitlin Marcoux

When the doctors returned, it was time to lay down on my stomach and surrender the fear.

Burr was asked to clear the room and an ultrasound machine was switched on. Someone injected an intoxicating liquid mellow high into my I.V. and soothing female voices began coaxing me to relax. Reflexively I started ujjayi breathing, and somehow I faded into the ether. I barely remember the nerve blocks going in.

The next thing I remember was thirst. Thirst, then dizziness, then nausea and then Burr. By the grace of the divine, the marvels of modern medicine and several hundred friends and yogis praying and practicing for me, my surgery was a success.

My cancer was vanquished, my breast surgeon saved my nipples, the plastic surgeon reconstructed my breasts and everything was completed within the space of 5 hours. As I came to my senses, I felt a tightness around my chest and a tingling in my breasts.

Breasts! Yes, I had them.

Two of them; swollen and distorted from surgery, but exactly where the old ones had been. How amazing. 

I was released from the hospital just two nights after my surgery. Sent home with a monstrous surgical bra and an elastic band that wrapped around my chest to keep the implants from pulling north, I felt like a walking Ace bandage. With the residual effects of anesthesia and morphine still pumping through my body I was amped enough to entertain company for dinner.

I’d love to say that things went smoothly from there on out, but I can’t. I’d love to tell you that I kept the full sense of mindfulness and presence I had found in pre-op, and that I basked continually in gratitude for my medical successes, but that would be a lie.

A knife might be less painful than depression.

The truth is, that once the last of the intravenous drugs wore off, nausea and vomiting descended upon me like locusts, eating up any excitement or enthusiasm I had had for surviving the surgery. Since I couldn’t hold food down, I weened myself off everything except Tylenol and Ativan, three days after my hospital discharge.

But once off the narcotic pain killers I was haunted by strange phantom pain in my chest and bizarre let-down reflexes in my breasts.

Every time I thought about my holding or snuggling with my son Griffin, I’d feel the hot prickling sensation of my long ago dried up milk coming in, and a floodgate of tears would stream down my cheeks. No longer having milk ducts to produce and deliver milk, nor a baby to nourish, I felt bewildered by these sensations and overwhelmed by maternal yearning.

Try Googling “phantom let-down reflex after mastectomy,” and you might get two or three hits on some breast cancer message board, and that’s about it. So little information exists out there that I thought I was just imagining things.

I made valiant attempts to stay positive, but found myself spiraling into sadness.

The dirty, dark secret thing that no one wants to talk about, the possibility the doctors don’t warn you about, the trap that Glass-Half-Full-Cancer-Warrior-Troopers aren’t supposed to succumb to, is that cancer can cause clinical depression.

And about 7 days out of surgery, I fell into a deep, self-loathing darkness. The darkness in my heart matched perfectly the deep purple bruising spreading across my chest.

Life After the Knife. Post-Mastectomy bruising. Caitlin Marcoux

One week post-surgery bruising.

I’ve always believed that knowledge is power, so I’ve since done a little digging.

It turns out that studies show as many as 1/3 of people newly diagnosed with cancer, in treatment for cancer and those who’ve survived cancer suffer from PTSD, post-traumatic stress disorder, and according to HealthNews Day, 1 in 4 women with breast cancer report symptoms of PTSD following diagnosis and/or treatment.

Symptoms of PTSD include “trouble sleeping, memory problems, irritability or anger, feelings of guilt or shame and episodes of uncontrolled sadness and crying spells” (Post-traumatic Stress via The Mayo Clinic).

Well, this explained the unbearable darkness and tumultuous tears.

I rested all of my hope on getting my surgical drains taken out as soon as possible. These drains are a package deal when you have a mastectomy and keep blood and lymphatic fluid from collecting at the surgical site. The drains are embedded inside the breast area and extend externally from your body, where they connect to collection bulbs, sometimes called grenades. The bulbs are awkward at best, and need to be fastened with safety pins to your clothes.

While the drains functionally provide an important service, they are anything but sexy (if you’re interested in more about the drains, there are hundreds of amateur videos you can watch on YouTube), suffice to say that daily life with the tubes and drains comes with its own set of challenges.

I was crestfallen when at my July 31st follow-up appointment with my plastic surgeon, he told me I’d need to keep the drains in for at least two more weeks due to residual edema and the stubborn internal bleeding. For a short while I let this pull me down deeper into my depression.

“Let everything happen to you, beauty and terror, no feeling is final.” ~ Rainer Maria Rilke

The drains are a drag.

But they are temporary, at least that’s what I  keep telling myself, and isn’t that the lesson that has made itself clear since the beginning of this journey: that everything is temporary (beauty, youth, fertility, hair, health, even breasts). The only constant in life is change.

In her powerful and tender book, Being Well (Even When You are Sick), Elana Rosenbaum counsels those of us with illness that “To accept change, we need to accept thoughts and feelings as well as our resistance to an altered life.” I read that and thought, what sage advice.

So all that being said, I decided this week, it was time to accept my bulbous plastic friends and my depression and then maybe I would stop feeling so out of control. Obviously climbing out of a depression is easier said than done, but with support from my partner, my family and my therapist, I stopped fighting everything so hard, and started to embrace things as they are.

Acceptance is key.

I picked up my old copy of Pema Chodron‘s seminal work When Things Fall Apart, started walking the eighth of a mile to the beach a couple of times every day, and recommitted to my meditation practice. My partner came up with smart, creative ways to make the drain grenades more comfortable.

We used old Kaenon sunglass bags to cover the  sticky plastic bulbs (making them much less irritating to my skin) and carabiners to fasten them to my belt loops. This makes wearing the grenades more comfortable and it saves my clothes from holes made by the safety pins.

Then, when I wanted to shower, we made good use of one of my many malas. It’s easy to pin the drains between the beads, and this frees up your hands for sudsing and shaving. Loop a long mala around your head twice, and you have complete freedom.

Sometimes I keep the grenades pined like this all day long. If I leave the house, they go back in the sunglass bags and get pinned inside one of Burr’s boxy t-shirts. If I’m teaching class (yoga) I wear a flowy skirt with a roll down waist band that can cover the grenades and a loose tank top on top to hide the drains. I sit on a yoga block at the front of the class and keep pillows under my arms to remind me from excitedly gesturing with my arms while I queue.

Life After the Knife. Post-Mastectomy drainage. Caitlin Marcoux

My sacred drainage mala.

I even started going to the gym…with my parents!

As if it weren’t already sweet enough that each day this week, my father or my mother has picked me up and chauffeured me to the Nantucket Health Club, the entire staff welcomes me with open arms and showers me with encouragement. “We’re with you” they say. “You can do this!” they declare.

The reality is, I can’t do much (in the way of exercise); nothing with my arms until my drains are taken out, but I can ride the stationary recumbent bike. So that’s what I’ve been doing; about 10 miles a day, at a very mild pace.* The endorphins I release while exercising are giving me the kick in the ass I’ve needed to stop the depression in it’s tracks, and despite the drains, I feel better than I have in weeks.

*Sidenote: it is important not to get your heart rate up too high while recovering from surgery — exercise only under your doctor’s guidance.

My dad is a cancer survivor too. Stage IV throat cancer almost took him from us two years ago. It’s kind of a miracle he’s alive, considering he smoked well into his 50′s.

Never having been one for a workout, it’s impressive that this year he’s getting himself to a few group fitness classes per week. I’m tickled pink when we go there together: two cancer survivors, working out in the same gym, giving cancer a run for its money.

My life feels very different since I was diagnosed with cancer.

It certainly looks different. Some times things change at lightening speed; like the initial diagnosis which hits you out of nowhere at 180 miles per hour. Other times a treatment or procedure seems to go on forever: hours can be lost in trace watching chemotherapy drugs drip slowly from their IV bags.

The key for me I think, and perhaps for all of us no matter what the struggle, is to stay present with whatever’s happening, whenever possible, as much as possible.

I have a few more hurdles to jump before I can put breast cancer behind me, but with presence and acceptance things are getting easier every day.

“The curious paradox is that when I accept myself just as I am, then I can change.” ~ Carl Rogers

Making the Breast Decision: Mastectomy & Reconstruction?

Originally Published by RebelleSociety.com
July 23rd, 2013

 

{via Tumblr}

 

It’s been 4 months since a core biopsy revealed I have invasive breast cancer. Since then, my days have been chock-full of research and reflection, so I’ve had plenty of time to think about the upcoming July 24th surgery that will theoretically save my life.

In the past 4 months I’ve had 14 infusions of chemotherapy and 16 weeks toweigh the options: single mastectomy, double mastectomy, reconstruction, no reconstruction, nipple tattoo, artistic tattoo, no tattoo. I’ve grappled with whether the path of least resistance would be to peel myself back to the bone, bravely staying flat chested forever, or to move gracefully forward with the replication of what I am about to loose.

Each option has its pros and cons. Of course they are all preferable to have no options at all.

With all the decisions that needed to be made, I’ve researched all my available choices (there are many) and prepared myself for the various possible outcomes of resection (there are a few). I’ve asked everyone I knew who’s gone before me all the relevant (and delicate) questions: Are you happy with your choices? Would you do things differently? Do you like the way you look?

Some of my fellow breast cancer warriors elected to remove only the breast affected by cancer, and haven’t sought to reconstruct. Some of these women use an external prosthetic in their bras and bathing suits, some don’t.

Many women I’ve spoken to have removed both the diseased breast and the healthy one prophylactically, and have reconstructed both. Some of these women were candidates for nipple-sparing mastectomies, which left their original areola and nipples intact; some were not and could not.

For those for whom saving the nipple and surrounding skin isn’t an option artistic tattooing can be healing. These women are empowered by reclaiming this part of their body with stunning tattoos where nipples or whole breasts used to be. Each woman’s options are affected by her case, diagnosis and genetic background.

The possibilities are many. The choices can feel overwhelming…

{Via BreastFree.org}

I’ve taken a winding, sometimes bumpy road to arrive at my own decision.

In the beginning I researched various autologous reconstruction procedures, all of which create new breasts using some fat, muscle, skin and blood vessels harvested from another area of one’s own body. But I came to the conclusion that this option could leave me physically weakened in the donor area of my body, and might seriously interfere with my yoga practice.

Then I asked myself if I’d be okay using cadaver or bovine (yes, cow) tissue to hold a silicon or saline implant in place. As an aspiring vegan, this presented me with a bit of an ethical dilemma, and I wasn’t sure if I could introduce any kind of foreign body into my own; whether it came from a four-legged friend or a chemical manufacturer.

Down to the bone.

In May, I came to the momentary conclusion that I would choose mastectomy without reconstruction. I started compulsively feeling my ribcage, imagining a smooth hillside slope from my collarbones down to my bellybutton. I’d press my fingers into the divots between my ribs and try to picture myself with a full set of 12 impressions instead of the breast tissue that presently occludes the spaces between my fifth, sixth and seventh intercostal muscles.

For hours and hours I Googled images of women without reconstruction to see how I would feel when trying on a more Balanchine ballet dancer version of femininity: flat chested and boy-like. What I found were hundreds, maybe thousands of brave women who have documented their journey through breast cancer and proudly displayed photographed themselves or posed for others.

Coffee table books and websites, like The Scar Project, celebrate these women and beautifully illustrate the process of survival and recovery. The photographs I unearthed revealed incredible courage and strength, and touched places deep inside my feminine soul.

 

{David Jay Photography via TheScarProject.org}

 

{David Jay Photography via TheScarProject.org}

 

But after sitting with this decision for several weeks, I realized that something was off. My decision no longer felt personal. It felt political, forced and academic. I realized that the pressure of what I thought I was supposed to choose was strangling what I wanted to choose. 

Through meditation and self-inquiry, I realized how reactionary my initial decision had been. I had judged myself harshly in April for wanting “fake breasts,” and I had labeled myself vain. I needed to get out of my head and listen to my heart.

When I finally did, I realized that choosing not to reconstruct out of fear of being judged for having implants is no more authentic than choosing reconstruction for fear of being flat chested. Either path is honorable and navigating breast cancer is brave, period. Other people’s opinions are none of our business.

CM

 

Beauty takes many forms.

I have unending admiration for the women who have lost their breasts to cancer and have chosen not to reconstruct. I think they are just as beautiful as women who’ve never gone through cancer, or prophylactically opted for surgery. But after much debate with myself, I have chosen another path.

Tomorrow, June 24th, I am having a bilateral mastectomy. I have chosen to remove both my breast that has cancer and the one that does not. If single stage reconstruction is possible, it will happen shortly after my breast tissue and cancer is removed.

If my cancer is still too extensive to save the majority of my skin and nipple, my plastic surgeon will put in tissue expanders that will stretch my skin until it is able to hold a pair of implants. Either way, I am excited to have a new pair.

This decision has brought with it great freedom. I feel released now; released from the pressure I was putting on myself to practice the asceticism I had applauded as part of renouncing reconstruction.

With my mind settled on rebuilding what cancer has taken from me, I’ve been able to return my focus to my heart. Spending time in quiet meditation and holding myself with greater tenderness, I’ve been mourning the imminent loss of the breasts I used to feed my son, and pleasure my partner.

In honoring our time together I’ve been directing thoughts of loving kindness towards my breasts and letting go of any negative feelings I’ve had about them in the past. I’ve come to realize that for me saying good-bye to my breasts has also been about letting go of any shame, blame or animosity I’ve felt about them in the past.

I’ve forgiven their colossal and quite early development in my pre-teens, the shrinking they did when I lost weight in my 20s, the tear-jerking mastitis I had during the first few months of breast feeding, and their abrupt deflation after I weaned my son. I’ve reached back into my relationship memories and forgiven the right one for being smaller than the left (a physically perceptible fact that mortified and embarrassed me in my 20s) and I’ve reframed any disappointments I’ve had in my sense of self as they’ve related to my beautiful mammary glands. On the brink of momentous change, I think I’ve finally made peace and let go of all the old gripes and insecurities.

I’ve put my hands over my chest and thanked my breasts for all the amazing things they’ve brought into my world: a strapping, well-nourished toddler, a satisfied and engaged partner, and a deeply loving maternal sensibility within myself.

I’m ready now; ready to make space in my heart to welcome myself home again: perhaps a little modified, but healthy, cancer-free and just as much a woman as before.

{Photo: Larisa Forman / Caitlin Marcoux}

“Think of all the beauty still left around you and be happy.” ~ Anne Frank

###

Read more about my journey with cancer:

>> 10 Practical Tips for the first 10 Days of Cancer. 

>> How to Talk to Someone with Cancer.

>> Cancer and Equanimity: Can you see the forest through the trees?

###

Looking for more 411 on Breast Cancer?

Check out these resources and personal stories:

Breastcancer.org

BreastFree.org

StupidCancer.org

Susan G. Komen

American Cancer Society

Breast Cancer Resource Center

Living Beyond the Breast

National Cancer Institute

Caring4Cancer

Crazy Sexy Cancer

Breast Cancer Blogs:

Generation Why

Chemo Babe

Boo Cancer Your Suck

Stupid Dumb Breast Cancer

Cancer and Equanimity

Can you see the forest through the trees? by Caitlin Marcoux

Originally Published on RebelleSociety.com
July 10th, 2013 

{Photo: Robert Sturman / Burr Tupper}

{Photo: Robert Sturman / Burr Tupper}

You know the saying about not being able to see the forest through the trees?

It’s most often used in a negative context: If you can’t see the forest for the trees, the implication is that you can’t see your whole situation clearly because you’re looking too closely at the details.

But it seems to me that there are times when it is entirely appropriate, necessary even, to focus on the details of one’s circumstances. It can be the very details of a difficult situation that see us through, and help us to put one foot in front of the other. The loss of a parent or child, a life threatening illness, a natural disaster, an unanticipated personal tragedy; these are times that the trees can be the very thing that keep us from getting lost in the forest.

“Trees are poems the earth writes upon the sky, We fell them down and turn them into paper, 
That we may record our emptiness.” ~ Kahlil Gibran

With the onset of cancer, the details are the trees that we cling to in the beginning, and we take what support we can from them: What is the diagnosis? What stage is the cancer? What grade is the tumor? Has it metastasized?

As we learn more about our illness, we climb up these trees and look out over the forest. We might begin asking ourselves: Do we like our team of doctors? What are our treatments options? Are we at the right hospital to do what needs to be done? What is our prognosis, 5-year survival rate, and overall life expectancy with such an illness? Each tree could be seen as one of this important question.

Maybe the forest represents the culmination of information gathered by these questions; data that informs the way we navigate through such a challenging circumstance.

Like big huggable solitary trees, the ritualistic details of chemotherapy can become oddly comforting. Week after week we see the same people at the infusion ward.

Every time we report for a treatment, we are weighed and our vitals are checked. Our ports are washed, disinfected and accessed for blood. We wait for our labs to return and our white blood cells, neutrophils, platelets and hemoglobin levels are accounted for. IV bags with our drugs arrive from the pharmacy and we get hooked up. We get comfortable. We put our headphones on, open up a good book, or chat quietly with a neighbor. A friendly nurse might offer a warm blanket.

There’s a consistent ritual. It is one of the few predictable routines in a world of unknowns, the details of which become a strange comfort. And for a moment or two, cancer doesn’t seem so bad. Through ritual, we’ve managed to normalize it.

Chemopause.

summer

{Photo: Nicole Harnishfeger for the Inquirer and Mirror. Nobadeer Beach, Nantucket}

 

Twice recently, I’ve run into a local resident of Nantucket in some public setting; coffee shop, yoga studio, and have been asked the very common Seasonal Resort Town Question: “How’s your summer going?”

This is a question that is used between year-round locals to segue into a discussion that typically includes commiserating about 12 hour work days, encroaching deadlines, Fourth of July traffic, the lines at the Stop n’ Shop, and a level of exhaustion we don’t navigate the other 9 months out of the year.

Other times it’s a question that’s asked with the polite assumption that you will be involved in one of the many festivals we host on Nantucket in June, July and August: the Wine, Film, Dance, Yoga, Comedy, Book, and Garden Festivals, or in hopes of sparking up a conversation that includes beach plans and recent BBQs.

Either way, the question has caught me off-guard each time. I’ve had to pause, and remember that yes, it is in fact summer on Nantucket; something we year-rounders live for and dread all at the same time — and I’ve barely noticed.

Cancer may have put a pause on my life, but for the average person around me, it is in full swing.

My friends in the trades and restaurant & hospitality industries are working long hours. Summer residents are over-crowding the grocery stores and making large-scale picnics on the beach the priority of their week. There are evening dinner parties to go to, fundraisers to attend, and glasses of rose to sip.

Thousands and thousands of people flock to Nantucket to celebrate summer, many of them spending as many dollars when they get here. Those of us who aren’t rushing to spend money this summer are rushing to earn it; making hay while the proverbial and not so proverbial sun shines.

Summer is in full regalia, yet for me it’s made little difference.

I have been so focused on the details of my cancer treatment that I haven’t seen the seasons changing right in front of my face. For four months now my days have been scheduled around getting to and from my weekly infusions, coping with side effects of treatment and caring for my little family as best I can.

So far, one of the only ways summer has been any different than any other season is the marked absence of my partner, who is a general contractor. The beginning of May thrugh the beginning of July is by far the busiest time of the year for him, so if it weren’t for the late nights and plaster dust, I’d have even less awareness of this particular time of year.

This is exactly the kind of bigger picture awareness, which becomes obscured by getting hung up on the smaller details, and I think it’s what the old saying “You can’t see the forest through the trees” was intended to illuminate.

It is a huge challenge, finding equanimity. It can feel next to impossible some days; moving back and forth between the ritual details of what’s happening in the context of one’s illness and the appreciation of everything else that’s going on around us.

We have a lot on our plates, but even cancer patients need to work on cultivating balance. If we can find equanimity in the face of this huge challenge, we can remain present in the flow of our lives;  for ourselves and for our loved ones. In this way cancer is our teacher, and she has put us on an accelerated quest for internal equilibrium. 

At the end of the day those of us in treatment are more than our diagnoses and blood draws, or the lost days of summer and the missed cocktail parties. We are people who once watched the seasons pass with clarity, and we will be those people again.

Perhaps it is up to us to share what we’ve begun to learn; that with or without illness, we can all try to find meaning in everything, both big and small.

I for one need to recommit to seeing not just the trees but also the entire forest.

Can you?

{Photo: Robert Sturman / Caitlin, Burr and Griffin: Nantucket}

{Photo: Robert Sturman / Caitlin, Burr and Griffin: Nantucket}

 

*****

 

{Open your eyes.}

How to Talk to Someone with Cancer

Originally published on RebelleSociety.com
May 15th, 2013

Bummer. Sounds like you have to talk to someone with cancer.

I’m so sorry – for you both! After all, it’s no easy task for either party. Going through this very thing myself, I’d like to help you out with a little cancer context, so that we can put your inevitable dialogue into your loved one’s perspective.

How to Talk to Someone with Cancer by Caitlin Marcoux

Making the best of a bad day of tests at The MGH Cancer Center.

The thing about people living with cancer, is that we are a complicated bunch.

Our senses have been rubbed raw by diagnostic testing and medical evaluations. We’ve been graded, staged and given projected survival rates. We’ve seen the fragility of our lives held up before our own faces, and we come away from our treatments feeling vulnerable in a way we’ve never felt before. We cling to our independence, but know we’re dependent on others for healing and help.

We are emotionally taxed and psychically drained.

The very nature of our dis-ease has thrown us into a world off-balance. Not only are our bodies working over-time to halt the production of alien-like rapidly mutating cells, they are struggling to process the toxic poisons we voluntarily ingest to cure ourselves. The very treatments we implement to make us healthy, make us sick. We walk a fine, contradictory line on a daily, weekly or monthly basis.

Cancer survivors know better than most how fleeting life can be.

We live with a foreboding and heavy awareness of risk. We are almost painfully aware that each day we have is precious.While certainly there are many silver linings, we remember wistfully what our lives were like Before Cancer, before the silver linings needed to be pointed out. We navigate the remainder of our days knowing that we will never again feel the pre-cancerous freedom we may have taken for granted.

“Toleration is the greatest gift of the mind; it requires the same effort of the brain that takes to balance oneself on a bicycle.” ~ Helen Keller

We know it’s a tall order, and that our needs are inconsistent, but we really appreciate your patience as we figure out exactly what we need. We want you to be sympathetic, but we don’t want your pity. We want you to look us in the eye, but please don’t stare. We’d like it if you could meet us where we are, not judge us for where you think we should be. We want you to reassure us that we are capable and brave, but don’t blow smoke up our asses; being the authority on ourselves, we know we’ve looked better, felt better, or seemed more grounded.

We’d like it if you lent us a compliment or even two, but for heaven’s sake, please don’t go over board. Sure, Bald is Beautiful, but given the choice, most of us liked ourselves just fine with hair.

How can you love us? Let me count the ways.

We still want to be loved, and by that I mean made love to. Those of us withbreast cancer and facing mastectomy could be on the brink of loosing the very largest symbols of our sexuality and femininity. If in the face of buzz-kill cancer, we can muster up enough energy to jump in the sack, please do whatever you can to rise to the occasion.

We might complain all day long about not feeling pretty but at night we’d like to be pursued as if we were the most beautiful women you’ve ever seen. We might ask you to turn off the light, just go with the flow.

Shower us with empathy.

Shower us with Love. Talk to Someone with Cancer.

Compassion is a prized commodity amongst our kind. It’s better that chocolate, red wine, or our anti-nausea medication. A single empathetic commiseration that indeed things can suck may be more appreciated than any other grand gesture of affection you can bestow us. It’ll certainly go over better than the knee-jerk condolences you might be tempted to offer up.

The truth is, no matter how above it we may project ourselves to be, we are embarrassed by our vanity. Even those of us who walk a path spiritually devoted to cultivating an awareness deeper than the skin, know real and intense discomfort when our physical identity starts to fall apart.

We may attempt to take control of our hair loss by cutting it short, or shaving it off. We may throw ourselves a Boobvoyage party before a mastectomy or parade around with our newly bald head held high. BUT we are actively engaged in the most difficult task of accepting that we are completely and utterly out of control.

This week I’m grappling with something I find simply humiliating. As if it weren’t bad enough that my hair has fallen out only in patches, to add insult to injury I now have something called folliculitis, a bacterial infection of the hair follicles, not only on my scalp, but also in the soft downy follicles on my neck and all the way down the small of my back. It is nearly impossible to feel sexy when touching your own head gives you the heebie-jeebies.

For all the cancer patients out there who have experience this particular itchy, hot, and unflattering torture, I bow to you. It takes a formidable person to rock this particular look without tears. And to those of you, who like me, have wanted to hide far from society in the seclusion of your own homes, or in the very least under a hat, I feel you. I know the last thing in the world you want to hear is how beautiful you look, when you feel like shit.

Let’s get real.

We know that you know we are strong, but don’t you know we don’t always feel that way? Do you know how hard it is for us to be brave when our hair is falling out and our bones are itching? Do you know there are days we don’t feel graceful, moments we don’t act graceful and times we fail to live up to our own graceful expectations? It is hard for us to feel empowered with an icepack on our head and a heating pad on our knees, dry red eyes and a rashes lashed across our skin.

Sometimes we feel bad.

Post-chemo Prayers: How to Talk to Someone with Cancer by Caitlin Marcoux

Praying at the Post-Chemo Alter. Summer 2013

We don’t envy you: those of you who run into us at the grocery store, or the coffee shop on one of our bad days. We know it’s awkward to hear us panicking on our cells phones with our mothers, or crying to our husbands. But please don’t walk away and pretend that you didn’t hear. Chances are in a moment like that, we need your help and we might be too proud to ask.

Forget attempting to offer up some gratitude platitude (we are more grateful for the chance to keep living than most), just give us a silent squeeze. One hand on the shoulder is worth a million well crafted aphorisms. Most likely, we will hug you back with all our strength; perceived or projected.

We want you to see us. To see our strength and our vulnerability. To feel our pain and to know the depths of our gratitude. Ask us sincerely how it is, and we will tell you the truth.

“There is no difficulty that enough love will not conquer; no disease that enough love will not heal; no door that enough love will not open; no gulf that enough love will not bridge; no wall that enough love will not throw down; no sin that enough love will not redeem…” ~ Emmet Fox

Here are a few more things to keep in mind when you talk to someone with cancer:

1. If you know about our disease, address it immediately. Chances are we already know you had dinner with a friend of a friend the night before last and they told you all about it, so get it off your chest. Waiting for us to tell you how we are puts us in the awkward role of feeling like we’re complaining; usually things could be better, but if you’re curious about how we feel, just ask.

2. If you’re not prepared for some detailed response to your inquiry, just don’t ask. We may need to vent about some gnarly side-effect, and most of them are kind of yuckie. Be prepared to listen. Your shoulder to cry on might be the biggest boon we get all day.

3. Please refrain, if possible, from telling us a story about your friends and relatives who died of cancer. Just like a pregnant women gearing up to deliver her baby, it’s important that we surround ourselves with stories of success not fatality. If you haven’t experienced cancer first hand it is normal to want to relate in any way possible, but for our sake think twice before sharing a story with a bad ending.

4. Unsolicited advice might be great, but it’s still unsolicited. You might just have the most miraculous outside-the-box alternative therapy that you’re dying to put to the test, but please, unless we’ve asked, soften your enthusiasm. No one takes their diagnosis more seriously than the patent themselves. Most cancer survivors I know have thought long and hard about their treatment plans. They’ve often consulted their nearest and dearest and have gotten a second and third opinion. And by the time we are in active treatment we have a pretty solid plan of attack in place.

5. Empathy, empathy, empathy. Plain and simple, cancer sucks. If anyone wants to talk about how it’s a gift, leave that to the patient to offer up.

6. Shower us with love. According to the mother of Western yoga, Judith Lasater, all emotions stem from the two most basic: Fear and Love. We, cancer patients, are confronting our fears in a full frontal attack. Showering us with love is like helping us stock up our arsenals and helps us prepare for battle.

7. Lighten Up. The more you can make us laugh, the better. This is not to say we don’t appreciate you taking our challenges seriously, but let’s face it, laughter is the best medicine. If you can find a way to make us giggle we will love you forever.

I am lucky enough to have some of the best and silliest girlfriends in the world. When three of them came to visit me last month we took over the infusion room at the Nantucket Cottage Hospital. When Gretchen, my infusion nurse, slipped out to go to the lab, the girls promptly took over and we turned Cancerland into Clubland.

Here’s the video to prove it.

 

9. Touch us. Cancer is not contagious. We can’t give it to you. What we can give you is the chance to heal our aching hearts. Most of us just want to be held.

How to Talk to Someone with Cancer by Caitlin Marcoux

The healing power of contact.

###

Pretty: It’s All in Your Head

I’m going bald.

Many of us have had that classic anxiety dream, you know, the one where your teeth fall out? According to Dr. Oz it’s one of the 5 most common dreams. Your teeth falling out of your mouth is likened to your emotions falling out of control and is said to represent the worries and anxieties that surround us in life.

If you dream of losing your teeth, it has to do with ‘loss’ in general such as loss of youth and all things associated with our anxiety of getting older.

~ Dictionary of Dreams

Today is April 25th. It’s been one month now since I was diagnosed with stage 2 invasive ductal carcinoma. It’s a big day, there’s a lot going on and a lot to be grateful for, so when I sat up in bed to enjoy my 6 am cup of coffee, I was feeling pretty excited.  I opened up my digital datebook to check the schedule of todays appointments, and reached up to scratch and itch. Then it happened – a snowfall of hair and flaky skin, and it rained down, all over the glowing screen of my iPad. A faint gasp and then a sob… grief.

Hey, I knew this was coming. I’ve been preparing for weeks. I’ve taken steps all along the way that I thought would help me to feel empowered and in control.

Back on April 1st, I threw myself a hair cutting party. I celebrated cutting off all my thick locks, and had my dear friend Darya free me from the long hair I had identified myself by for the last 19 years. Then on the 10th my friend Anne cut it even shorter. I still felt in control, and I was managing my anxiety about going bald just fine. Thank you very much.

Ice Pack Head: April 14th, 2013

Ice Pack Head: April 14th, 2013

But last week my scalp started to itch something awful. The skin on my head began to feel hot – so hot in fact that I started wearing Granny-style ice packs on my head at home, and I started having the dream, except it was my hair falling out, not my teeth. In my car on Sunday afternoon I noticed a disproportionate amount of platinum blonde hair on my steering wheel and car seat. It was enough to make me pause.

So really, it should come as no surprise that on my one month Cancerversary I am facing the anxiety that accompanies hair loss. Scheduled, no less, to confront it tonight while I teach class, up on a stage, in front of 80 yogis and yoginis at the Dreamland Film & Performing Arts Center. I lived in Chicago for 5 years, where they have a saying, “Go big or go home”. This has never felt more apropos.

Yogis have a practice called Satya.  It is one of the five restraints, or moral codes of conduct, and is basically the belief that we must always tell the truth.

As much as I would like you to think I’m above and beyond feeling upset at the loss of my hair, the truth is I’m not. I can get on board with being bald, but  I am not beyond grieving the loss of my hair. I am not beyond feeling naked and raw. I am not beyond the pain and humility of this exposure. One month and 4 chemotherapy infusions in, my face is broken out, my chest and back are covered in red splotches and eruptions of localized break-outs, the tops of my hands are scaly and bumpy and itchy as hell. I am struggling to feel attractive, feminine, and sexual.

Blast from the past

Back in junior high school there were a couple of boys who’d taunt me and call me Pimple Face. I spent many nights in tears, struggling with a tube of Clearasil and my raging adolescent hormones. Those experiences left deep emotional scars and I worked hard in college to overcome the self-hatred that accompanied my teen years. Now that my skin and hair are being challenged by chemotherapy I am reminded how fragile and vulnerable my relationship to my body can be. And how diligently I have to work to keep loving myself.

The truth is that since surviving adolescence, I have enjoyed the privilege of being pretty and I’ve taken it for granted. Like many women I have wasted countless hours of my life comparing myself to others and have felt disdain for the the body I have been gifted with. I have worried and wondered if the men I have been involved with would find me attractive enough to continuously love me.

I have betrayed the beauty that I have been blessed with by longing for someone else’s. But I have never been traumatically scared, or chemically burned. I haven’t suffered an amputated limb or genital mutilation. I am fortunate enough to have a symmetrical face, and a strong physique. And now, on the brink of finally appreciating that, I have to stand idly by and watch my body morph into something I recognize even less. It is ironic. It is humbling. It is painful. But, it is also a gift.

It is an opportunity for growth.

Yesterday my friend and teacher, Elena posted on FaceBook that “Vulnerability is the best medicine”. If she’s right, I am getting one really big hit of medicine right now. Hopefully I can learn from this vulnerability and use to heal myself; not only from cancer but from the dark, ugly truth that I have not been appreciative of my body.

It’s time to embrace adage that bald is beautiful. In fact, both the men I’ve married in my life have been bald. Never mind that the first one died of cancer. He’s probably having a good laugh at me (or with me) right about now.

I don’t know if I continue to let my hair fall out naturally, or if when I go to Darya’s this morning for my pre-benefit pedicure I’ll ask her to shave it all off. There’s probably still enough hair on my head to spend one more night amongst the Hairy, but I’ll make that call in a few hours.

To all the women who have faced the loss of their hair, I bow to you. To all the cancer survivors who have showed their vulnerability and bravery, I bow to you. To all the BEAUTIFUL baldies out there – let me get down on my knees and bow. Thank you for showing me the way.

 

 

 

 

 

 

when fight and flight turn out the light

3:00am April 11th, 2013
Nantucket, MA.
Breast Cancer Day 26
 

Taxol/Herceptin

Like I said in my last post, there are good days and bad days. This is just as true in regular life as it is in life with cancer.

So I knew it wouldn’t be long before the adrenalin my body’s been using to fight and fly it’s way through the first couple of cancer weeks would eventually wear off. Adrenaline is an amazing chemical that helps us deal with difficult things, prepares us for battle, gets us juiced up to win the big race. It gives us a powerful boost of fast acting energy, enables us to run like the wind, and in my case, got me from exam table to operating table, bone scan to CT, biopsy to chemotherapy. I didn’t have time to feel sorry for myself, I was too busy getting organized to save my life.

Over the last few weeks I’ve felt galvanized to attack my responsibilities with gusto. I’ve read the research, the this is your life with cancer books, created treatment plans and schedules, mapped out my calendar for the next 15 months, organized childcare and playdates, re-structured the medicine cabinet, organized the refrigerator, corresponded with countless friends, and plowed forward with work to the very best of my ability. I’m not bragging… I’m preparing you for the crash.

 office work in the MGH halls{Me: organizing my thoughts while awaiting a lymph needle biopsy}

Too much of a good thing is usually bad

Once you’ve won your race, passed the big interview, or absorbed the news without fainting, and bathed in your pool of epinephrin and nor-epinephrin, it’s time to get out. It’s not a good thing for anyone, to stay in a state of sympathetic nervous system overdrive. Too much cortisol; another neurotransmitter which is designed to act in harmony with adrenaline and perpetuate your state of fight or flight, will eventually cause damage to other parts of the body: things like

  • Exhaustion
  • Physical pain
  • Lack of concentration
  • Memory problems
  • Anger
  • Sleep problems
  • Aggression

Really? On top of having invasive ductal breast cancer, I was going to take on that list? No thanks…

So as it came a little closer to the time of my actual treatment I did my best to prepare myself to actually feel things, not sprint past them: fear, anger, resentment, shame, guilt, helplessness, and vulnerability, I let it all well up and come flooding out. I made  a pact with myself that I would allow myself to experience these things as they came up, sit with them, and then do my best to move through them.

So this is where the yoga, meditation, gratitude lists, thank-you notes and writing come in. I have absolutely no interest in becoming bosom buddies with cortisol, or any other part of chronic stress, or the PTSD they say many cancer patients cope with for the rest of their lives.

Have you ever been to a chemo session? The video below is of me, obviously before the recent haircut, getting my first infusion of Taxol and Herceptin (the two chemo drugs I’ll be taking until June 12th). It’s just raw footage, nothing very interesting… but if you’re curios, go ahead and watch. I won’t be offended if you don’t; it’s long.

 

Have a sense of humor.

It’s so true, having a sense of humor will take you far: way farther in fact than adrenalin, and without any side-effect.  Laugh at yourself wearing a stupid mask. Strike a gorilla yoga poses out in front of the hospital. Make a positive SPLASH in the murky, dreary often depressing world of deathcare, I mean healthcare.

Humor is merely tragedy standing on its head with its pants torn.  ~Irvin S. Cobb

my second chemo treatment{April 6th, 2013. Me: getting ready for infusion number 2}

Humor prevents one from becoming a tragic figure even though he/she is involved in tragic events.  ~E.T. “Cy” Eberhart

The truth is, I am very willing to be here and that makes it easier. I’m willing to sing out loud, probably off-key and to laugh at myself in spite of my fears. I’m willing to learn the most that I can from this crazy teacher named Cancer.

But just in case you thought I was playing this all too cool for school, I’, going to share one last (short I promise) video with you here. Maybe I’m the crazy one for sharing, but if my students are out there reading this, especially my Strong Girls, I want them to see that you can be fierce, loving and vulnerable all at the same time; that you can smile on the beach in the sunlight one day, and ball your eyes out the next – It’s all part of this amazing privilege we to enjoy as humans.

Don’t worry though – I’m laughing today 😉

Last thought for today..When life gives you lemons, make lemon aid! I hope anyone who has been affected by cancer will join me at the Yoga Room on Mondays, where I will be leading a FREE Yoga Therapy for Cancer Care class from 11-11:45am. You do not need to register, just drop in – just check the class schedule here, to make sure I’m not traveling for treatment that week.

Yoga Therapy for Cancer Care

Until next time, stay receptive.
Love,
C
 
 
turning tragedy up side down.