Setting Intentions for Love

What would it look like? Love. In the future. If there was a key word search, what words would you plug in? What adjectives would you choose?

Ernest Hemmingway, A Seed. Intention. Manifestation

 

The next time I fall in love let it be with these seeds in the soil…

Open // Receptive // Potent // Mindful // Respectful // Warm // Deep // Evocative // Confident // Musical // Silent // Hard // Soft // Artistic // Nuanced // Revealing // Raw // Vulnerable // Strong // Assertive // Dynamic //  Imperfect // Humble // Vibrant // Creative // Challenging // Inspiring // Brave // Yielding //Fluid // Truthful // Passionate // Fierce // Grateful // Familial // Ambitious // Tender // Strong // Contentious // Mutually Empowering // Intellectually Stimulating // Flexible

Om Namah Shivaya

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

The Mindfulness of Cancer

Photo: Larisa Forman

{Photo: Larisa Forman}

This is it: the last 6 days of me, Caitlin, as I (and you) know her.

The last six days of me with the two breasts God gave me, the ones I proudly used to nourished my son Griffin, the ones I  struggled to like as a teenager, and the ones I came to love as an adult. By next Wednesday, the 24th of July, they will be no more.

Truly, everything is temporary, especially our bodies. This entire adventure with cancer has been one big lesson in giving up attachments and identity and learning to practice mindfulness: learning to be as present in the challenging moments of my life as I am in the blissful.

In a class I taught at the Yoga Room, just this morning, I read the following passage:

Mindfulness is not about an absence of emotion or a way to steam the natural flow of illness, aging, loss and separation. This flow may be inevitable, but our response to it is not. As a person who lives with cancer and the uncertainty of another reoccurrence, I need to be mindful. This “bad” thing (cancer) is also “good”, because it forces me to remember that my time is limited. Knowing this is a gift that forces me to notice what brings joy and harmony and wheat does not. this is mindfulness: learning from what we do and acknowledging the patterns of thought and action that have been established so we can decide whether thy continue to sere us well. ~Elana Rosenbaum, Being Well Even When You’re Sick

As I’ve watched my hair fall out, my eyebrows thin and loosen, my skin redden and tighten and my moon cycles dry up, I have been forced  to learn impermanence on a deeper level I may not have otherwise appreciated in my 30’s.  Finding the silver linings has not always been easy. In fact, cancer has challenged me in ways no other life experience has, but for that I am now grateful.

As I prepare to say good-bye to my beloved breasts, I know I am meant to learn even more about myself through this process. Despite the anxiety I am feeling about the medical procedure (the vulnerability evoked by needles, tubes, paper gowns, and face masks), I am starting to feel the empowerment of knowing my cancer will soon be gone.

By this time next week, I will be finished with a day of pre-opertative labs and doctor’s appointments and getting ready for my surgery the following morning. When I think about this there is a small amount of anxiety that remains in my belly, but practicing Mindfulness meditations, both on my own and while teaching others, has helped me move out of the darkness of the past few weeks into a more profound appreciation of the moment.

Watching my breath, taking in my surrounding, listening, tasting, smelling, breathing, feeling – this is the practice.

The ultimate goal of this practice is heightened awareness to feel more alive and be free of suffering. It is a practice that cultivates compassion and wisdom. Mindfulness is an adventure. The present moment is a precious moment. 

We have come to the end of our first intermission… and it is nearly time for Act Two to begin.

These are the last 6 days of swimming in the ocean and being able to fully submerge myself in a tub or a pool. These are the last few days of being able to use my arms around the house: to make meals, fold laundry, shave my own legs, put away dishes or make beds. These are the last few days I will wrestle with my son or hold my partner. How delicious it is to have these six days! I feel oddly hyper aware of my arms and connected to all the amazing thing they can do.

I feel a great tenderness to my breasts and gratitude for all the joy they have brought me and others.

For sure there have been some dark moments for me over the past few months: a couple of significant panic attacks, some depression, some grief, some resentment and some anger. But I’m learning to sit with the discomfort. I’ve allowed it to rage and to subside, to wax and to wane, to take me down and let me go, and in doing so, have practiced being as much with the “bad” as with the “good”.

With patience and acceptance, the mind does begin to quiet, but not if we try to push it away or repress it. If we try to control it, it will, like a rebellious child refuse to calm. 

I’m ready.

Now I feel strong again and ready for what’s next to come. There is nothing to be afraid of.

Strength

{Photo: Larisa Forman}

The surgery that will “save my life”, as my breast surgeon described it, will commence some time shortly after 5:30am. Though anything is possible, I have been told to assume the operation will take about 8 hours. When I wake I will be with my partner, my girlfriend Elisa and  my parents (who will be returning from a 2 week stay in Maine). I hope to wake up with two new and fully reconstructed breasts and the best part of all, without ANY CANCER.

Yes, that’s right, no cancer, or in medical terms NED aka No Evidence of Disease.

You might remember from my earlier posts, that Act Three of our drama includes 4 more rounds of the chemotherapy drug fondly nicknamed “The Red Devil”, but if all goes well in Act Two, my cancer should be all but eradicated. These 4 infusions of Adriamycin/Cytoxin are considered an insurance policy that all the “invasive” cancer cells that may have been missed surgically will be wiped out. This process will start just two weeks after my surgery – some time around August 21st…but let’s not get ahead of ourselves.

So please, if you are inclined  I would be honored if you would think of me on July 24th – any time between 5:30am and 12:30pm. If those of you who practice yoga could include me in your dedications, I would be forever grateful. And certainly, if my dear friends  in the Boston area feel like popping by to say hello when I’m in recovery – I would love to see you. I’ll be at Mass General Hospital.

Right now I am enjoying my life. All of it. For the next 6 days I want to live to the fullest: I want to teach, swim, meditate, practice, snuggle with my little boy, and love up my man all as much as possible.

As Henry David Thoreau said “You must live in the present, launch yourself on every wave, find your eternity in each moment.” 

If you are in Nantucket this Sunday, I hope you will join us for my Boob Voyage Party. The details are in the attached poster. If I don’t see you there, I’ll see you on the mat, at The Green, or in my dreams.

Namaste,

Caitlin

Boob Voyage Soiree

Boob Voyage Soiree: Sunday July 21st, 2013