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

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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?

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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.

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