Tag Archives: breast cancer

Why I Posed Nude on National TV

The vision came to me in the shower. I saw myself standing naked at the mouth of an open cave in front of a reverse halo of blackness. Charise was there too, crouched down to take my picture. I remembered seeing her at that art opening last spring, and the open invitation to do a nude photo shoot. Maybe I should give her a call soon. Then, as these synchronicities tend to happen, she called me the very next day. She excitedly told me how she was just contacted by the Megyn Kelly Today show, and they wanted to feature her work, The Grace Project. She wanted to photograph me the very next week. Not only would I be posing topless for a photo shoot, but would be filmed showing my mastecomied chest— the after effects of breast cancer— to the entire world on NBC. To my own shock and disbelief, the word “yes” tumbled from my mouth!

I thought I would never, EVER pose topless on national TV. But I was never ever going to get breast cancer either, like Viola, the grandma I had never met.  She was ravaged by breast cancer and passed away at 58, about a year before I was born. I grew up hearing the myth, “Cancer often skips a generation,” but lived like I had fingers stuffed in my ears—la-la-la-la! Besides, I ate clean organic food, and I went to the gym. I was impervious to breast cancer until I found that lump in my breast when I was 36.

When my 3 year old son scampered over me, his little kick to the chest area drew my attention to this lump, the size of a nickel near my left areola. Even then I refused to think cancer. It must be a swollen lymph node from all the recent dental work, I thought. I was working as an office manager at a small chiropractic office at the time, and the doctor had just decided to drop our medical coverage a month before. It can’t be cancer. I can’t even go to the doctor right now.

Some divine timing took over because this happened to be 2014, the first year that enrollment in insurance marketplaces opened up, thanks to the Affordable Care Act. It would be another 5 months until I successfully navigated the goliath marketplace website, got a referral to a breast surgeon—and faced the fact that all the lymphatic massage and homeopathic medicine in the world wasn’t making this lump go away. In May of 2014 that illusion of cancer invincibility came crashing down with a diagnosis of an aggressive grade 3, stage 1, triple negative breast cancer.

I was the first woman in my line to benefit from the advances in genome mapping, and the first to test positive for the BRCA 1 gene mutation. Now I could make choices knowing that I had an 85% risk of cancer recurrence if I kept any breast tissue, and that I had an elevated risk of a few other cancers. We found out my mom was also BRCA 1+, and she was able to have a prophylactic surgery, hopefully sparing her of ever getting breast cancer.  She told me how at 15 years old, she was terrified of her breasts and begged her pediatrician to remove them, even after seeing her mother’s butchered chest. Here she was finally getting her wish at 58, the same age her mother had died.

Charise Isis is half way through her mission to photograph 800 women who have had breast cancer and mastectomies, because that is roughly how many women are diagnosed with breast cancer each day in the U.S. But I couldn’t even consider being photographed when my friend first told me about The Grace Project in August of 2014. I was home nursing my incisions and steeling myself for the chemo treatments ahead. I looked like a Frankenstein Barbie with these hard, immovable implants shoved under my pectoral muscles, fresh red scars forming where my nipples once were and snaking towards my armpits. I was scared and angry at the absurdity of cancer. Some of The Grace Project women were smiling. All of the women in Charise’s photos looked so brave and strong. Would I feel this way someday too?

It would be a lie to portray this as one simple surgery. I had a Port-a-Cath installed and later removed—this would deliver the chemo right into a major artery or vein for distribution throughout the body. Then there was the infection in my breast and the ultrasound guided needle extraction to relieve some pressure, nerve-wrackingly close to my silicone implant. There was the round of IVF with egg retrieval to harvest some of my eggs before the chemical tsunami hit. I also had an augmentation surgery to make my chest more symmetrical. Then right before my 39th birthday I had my ovaries removed to protect against ovarian cancer, another high BRCA 1 risk.

I desperately wanted to move on with my life, but even though my hair grew back and I was rebuilding strength and stamina, there was still this looming cloud of fear and uncertainty. With triple negative cancer, there is this sense of being on high alert for 5 years following a diagnosis. If it comes back, it might do so in a big way, showing up in my bones, brain or organs. But if I can make it to this magic 5 year mark, the statistics show my chances of getting cancer drop back on par with national averages.

Cancerversaries, those dates of diagnosis, surgeries, and first or last treatments are very triggering for a cancer survivor.  That’s why I decided to get my chest tattooed on the 2nd anniversary of that July 14th mastectomy. I didn’t go for nipple tattoos either. For me faux nipples were a mocking symbol of pain and loss. To take that date back in a powerful way, my tattoo artist, Miranda Lorberer, helped me create a gorgeous design that would be mine alone. We created a sprawling organic design inspired by the fine linear Indian Mehndi tattoos, that combines spirals and florals and peacock feathers together. As she worked the ink into my skin, she told me how her dad had died of breast cancer when she was in high school. I could feel his presence in the room that day.

I met Charise in person at an art opening last fall. Seeing her beautiful images on large pieces of silk was otherworldly, like skin printed on skin, soft, flowy and feminine. I was still not one of the women in her pictures, but now I had a secret under my shirt. After having my breasts brutalized by surgery, after being poked, prodded and clinicalized by doctors at countless appointments, they were finally mine again. I felt rare and exotic, and wanted to keep my breasts secreted away for the boudoir. I was not ready for the camera.

Then came the call about the Megyn Kelly show. For a brief moment I felt scared to death to be filmed and photographed nude. Then I remembered I had already looked death in the face, and something broke free in me. I coach people every day to make powerful choices, to take meaningful risks. This was not a time for me to hide out. This “yes” was a resounding answer from deep in my cells, calling me forward to some unknowable place. I thought of the woman facing down her surgery, or sitting home hating her surgical drains and icing her chest. Maybe she would see my picture and begin to imagine her place in this world beyond the inky black uncertainty of her cancer diagnosis. Maybe I could offer a little hope when the light is dim.

I prepared for the photo shoot that day with a long bath, thinking about the talking points I wanted to cover while the camera crew filmed us. I made a mental list as I shaved and moisturized. I wanted to mention CharityNavigator, to think beyond pink ephemera when donating money towards cancer causes, and avoid those foundations that absorb a majority of funds towards administrative costs. I wanted to mention that often metastatic cancer research is underfunded—only 2% of funds going towards metastatic research is such a meek sliver of hope on the fundraising level. I wanted to encourage people to support local oncology programs, and individuals living with cancer in their own communities. I hoped to mention my coaching work and my blog, Melissashealinghope.

It was clear the producer had a very specific moment in mind, and my talking points were moot. With the cameras on me I felt raw, exposed, and vulnerable. I wondered how I would look. Who would see this? What would people say? This powerlessness was eerily reminiscent of those weeks around my diagnosis, when my hopes about having a certain surgery or working with a specific doctor were dashed. I was seeking a second opinion at Sloan Kettering when I learned that nipple sparing surgery wasn’t an option for me, that the ducts met in the nipple and could leaving them could lead to a cancer recurrence. Ironic how I could only be shown topless on TV without these little pieces of flesh, my innocent nipples offensive to my body and to the viewing public.

Standing there with the lens focused on me, Charise asked me to close my eyes, to breathe and feel my feet on the ground. Her soothing voice told me to send grounding roots deep down underground, and the camera jitters began to ease. With my eyes on the horizon, the camera crew faded. I thought of Milyn, Champagne Joy, and Karen. Once here, and now gone, leaving inexplicable holes where there used to be life. I thought of my friends still in the grips of their diagnosis, held in this dance between worlds. The cool air on my skin brought me back to the moment, and I looked into the camera. I never want to forget what a miracle it is to be.

43260433_325094408067880_6741779382500589568_n

Advertisements

I found the hidden key to post-menopausal weight loss!

I once canceled an appointment with the oncologist because I felt like I was too fat.

Here’s what happened… The Dr. had been telling me for the last two visits that it was in my best interest to eat a sugar free, mostly fruit and vegetable diet -either that, or take the drug Tamoxifen. The later didn’t make sense as an option because when presented with the pamphlet, it said it was only effective for woman who had hormone+ cancers, AND that there was an increased risk of uterine cancer for those who took the drug! I also read something about needing to wear gloves when you wipe, and to make sure your children don’t come in contact with your urine by accident. huh? no thanks. The choice to focus on diet made sense to me.

But to be challenged to lose weight by the oncologist after surgical menopause, became a preposterous chore! My metabolism had flat-lined, and I had this new level of midsection muffin top! It didn’t seem to matter how much I worked out, or if I counted calories. I wasn’t seeing lasting change. Instead of facing the doctor with my failure (yeah right, lose 15 lbs in the wake of the Christmas season!) I bailed on the appointment.

Now, I love bodies of all shapes and sizes, but I personally felt weighted down.  I was always tired, chasing cups of coffee as the day wore on. Not only was my energy schlumpy, but my mind was foggy too. I was missing the edge and drive that a younger estrogen intact version of me use to feel.

But I have made a tremendous breakthrough!!! I just lost 10 lbs in one week without starving myself, buying into some big PLAN with products, OR exercising like a MANIAC!

In the past, I’ve tried all sorts of cleanses and ways of eating, from vegetarianism, to veganism, raw, gluten free and paleo, but what is rocking my world right now is my discovery of a KETOGENIC way of eating, or Keto diet. It really isn’t a diet per se. I would think about it as a life altering perspective shift in how you view food. It is a lifestyle change.

In the first 7 days of eating this way, I have lost 10 lbs, including 2″ off my waistline, and 3″ off of my hips. I have increased energy, stamina and focus. All prior gastrointestinal troubles I’ve had, are gone. No more bloating or gassiness. The best part of all is that I don’t feel plagued with intense cravings for sugar or carbohydrates. I don’t feel starved, hungry, deprived or limited in my food choices, and still I can’t – help – loosing -weight!

I have found a ton of Keto recipes, articles and blogs, and have learned ways to modify this diet for vegetarians. The biggest thing is that there is a complete elimination of sugar, processed foods and nearly all carbohydrates. Carbs convert to sugar, and if your body is running on glucose and fructose, you don’t burn the fat stores in your body. By starving your body of sugar and carbs, you turn into a fat burning MACHINE!

Ketosis is maintained by following a basic guideline of eating:

75% healthy fats, oils and non-starchy vegetables

20% protein

5% carbohydrates in the form of berries, and only a few other foods in small amounts.

This way of eating flies in the face of the SAD (Standard American Diet) we grew up eating. We have been force fed a food pyramid  that dictates that we eat lots of whole grains and carbohydrates, and pursue all things low-fat. Add to this, the travesty of processed food, which has tons of sugar, corn syrup, saturated fats, additives, preservatives and dyes.

I encourage everyone who has an inkling of interest in learning how to eat a healthier Ketogenic diet to watch a documentary that is out on Netflix right now called, The Magic Pill. It follows different people with a range of illnesses as they switch from a SAD diet to a Keto diet. Watch and see what happens! There are profound opportunities for healing and a better life waiting for people who are struggling with diabetes, high blood pressure, autism, neurological problems, gastrointestinal problems, autoimmune disorders, cancer, depression and poor self esteem.

I am so excited by this shift that I want to tell everyone I know. This way of eating is helping so many people, and might be just the shift you have been waiting for!

If you would like to learn about an opportunity to be a part of a group to share information and support, to fully step into a ketogenic, fat burning, energy filled life… if you want that group accountability and encouragement to lean on, send me an email today! I will share what I know, we will learn from each other, and from people who have been rocking this way of eating with great success for long periods of time.

 

Image result for muffin top

 

*MELISSA EPPARD is a certified Life Coach and Holistic Cancer Coach. When her son was only 3 she was diagnosed with an aggressive form of hereditary breast cancer. Now she coaches people through difficult transitions, teaches stress management techniques, and helps people live their best lives at any age or stage. She helps ignite the spark of purposeful living and creative fire in everyone she meets, and lives by the belief that what you nurture will grow! www.MelissaEppardCoaching.com

*Please note that I am not a dietitian, nutritionist or medical doctor, and am not giving health advice or nutritional plans. I seek to share information and inspiration based on my own experiences, and encourage everyone to do their own research. If you have a serious medical condition and take medication, you should continue to consult with your medical providers. 

 

Coping with Loss after Cancer

There is a raw wordless ache in my core. When I start to approach it, it builds into a fire that agitates my whole system and threatens to engulf the whole of me. It’s in my pulse and my blood. My scalp prickles and my hair hurts. I itch all over. My hands are restless, so I scrub dishes and fold laundry and pull weeds. I’m afraid that if I get too close to it, all my positive efforts at healing and rebuilding… my health, my career, all my gratitude, that it will careen off into a blurry void of hopelessness and crash into a gully of despair.

Three people in my circle have had their lives taken by cancer this year. Their names are Champagne Joy, Milyn Kukon and just this past weekend, Cat Barney. Cat and I were newly acquainted, and I wish I had more time to know her. Our sons go to school together, and this similarity in age, the idea of leaving behind a husband and son, it gathers the storm clouds and terrifies me.

I want to put a name on it, to analytically dissect it. That is safer than feeling the tsunami of emotion. I am left with this question:  How can I experience loss without retraumatization?

I have heard the saying that, “Anger is Sad’s bodyguard,” but I wonder if Sad is somehow allowing the walls to still stand. Anger threatens to obliterate me. Anger seeks to undo my remasking as a “Person Among the Living” after the absurdity that is cancer. Who am I angry with? Is it God? Is it Mankind’s destruction of the environment? Why would my genetic code go haywire like this?

I don’t know what to do with these feelings, so I write. I lean into my community again, like I did when I was weak and bald and sutured. What comes to me now is the image of being carried by a sea of people who love and support me.

After Harvey and Irma, and our mass retraumatization of watching these devastating images, I remember that most of us intimately know loss and pain and the vulnerability of being alive. I see these images and all I want to do is get on a bus and head to the most ravished place I can find and try to pick up the pieces.

As I wrote Cat’s name the sun broke through. I want to tell myself a story that she and Milyn and Champagne are everywhere now, all around us, invisible in the air, and we can breathe them in. Is raw vulnerability the gift they left? This reminder of impermanence? It makes me double down on my mission. Busy is my default coping mode.

Refocusing on the other, finding my community again, I’m leaning in.

I Have a Secret

I have a secret. It is hidden away underneath my shirt, and only revealed under the most private and intimate of circumstances. I reveal myself to only a select few. My husband, my mother, my aunt, a very few of the closest girlfriends will catch a glimpse.

I took for granted my natural born nipples. I first noticed them one day while lying on my belly, looking up at the Saturday morning airing of the ‘Smurfs’. With pressure upon my chest, I noticed a pinching feeling and discovered hard little balls had formed under my newly pubescent areolas. Later that day my aunt came over. After she and my mom conferred for a bit, it was proclaimed to me that, “Your buds are sprouting! You are becoming a woman!”

They were an annoyance at first, until the 6th grade, when I wore them with a meek sense of pride and embarrassment underneath that new first bra. I found my breasts possessed a strange power over the opposite sex, something I was not yet prepared to face and too young to harness.

Boobs were never up to snuff. In the gym locker room of high school, someone else was always bigger and fuller or god forbid, way smaller. I recall the well-endowed girls always written off as sluts by the other girls, likely due to the extra attention they were given by the boys. There was never a feeling of complete satisfaction, just more self-awareness, comparing and judging.

In the grocery store, you had to wear a jacket or a vest, or one of those near armor plated padded bras to avoid the tell-tale sign that left you exposed in the freezer section. It was as if we were supposed to be anatomical Barbies, with breasts formed in neat smooth mounds, in some mass denial that nipples existed.

After the breast cancer diagnosis, I looked down upon my chest with sadness and betrayal. They still just couldn’t get it right. After it was determined that I had hereditary breast cancer and stood an 85% chance of developing cancer in the other breast, I made the very hard decision to have a double mastectomy. Nipple sparing surgery wasn’t a good option since the cancer had may its way into my ducts. Now I looked down at the girls with deep sorrow, with apology in my gut. It was as if a lover were soon leaving me and we would be parted forever.

I had a few pictures taken of me before the surgery, so I would always remember my breasts as they were. Perfectly imperfect. Mine.

The irony of now having hard smooth round reconstructed breasts is not lost on me. For nearly two years I have been healing. While the physical scars are lighter, the emotional scars are harder to gauge. I think I am starting to heal a tiny fraction of nerve damage, starting to feel some sensations on my chest where before there were none. On the inside, some unnameable ball of trauma is starting to soften and unravel.

Nipples are as varied as a fingerprint or an iris. They are one of your private areas. This very private area of mine was clinicalized, ostracized and brutalized. My tattoo artist helped me claim my breasts again as my own, she made me beautiful. Together we envisioned the perfect design. Mine would not be flat 3-D renderings of areolas. I have seen amazing work to that end, but for me nipples would serve a reminder of what was lost.

What made this tattoo even more special is that while the artist completed her work, she revealed to me that she had lost her dad to Stage 4 breast cancer when she was just 23 years old. She and I had gone to high school together, but she was a few grades below me and her brother a grade above me. I had no idea the hardship they had faced as a family. As the ink gunned into my skin in perfect black lines, I heard the emotion in her voice. I felt her dad in the room with us. His story is in my skin.

Now I have reclaimed these private parts. I love how my new tattoos make me feel. Nude, I am beautiful and feminine again, rare and exotic. I will always wear this secret badge of courage with pride. It is a reminder that strength, resilience and hope is so much more than skin deep.

 

Breast cancer among men is a very real thing that is rarely ever discussed, and may lead to more later stage diagnosis in men. The American Cancer Society estimates that in this year alone, about 2600 new cases of invasive breast cancer in men will be diagnosed. An estimated 440 of them will die. While the incidence of cases in men is about 100 times less common than among women, it is still important to be aware of, and to normalize the conversation among men and the people who love them.

Mostly I Feel Grateful

I manage with a healthy dose of denial. Don’t waste too much of your day fretting over what is further down the pike. Just get through today, chin up, with an occasional look down so you know where the next foot is landing.

I knew this surgery was looming, and tried to brush off the cold feet feeling that started to creep up this last week. Sitting in my pre-op appointment waiting for the surgeon today, the feeling was nothing short of trepidation. The run of self-talk went from, “This is the home stretch girl –you got this!” to “It’s not too late to back out now. Leave well enough alone. So what if you’re uncomfortable and asymmetrical.”

What surprised me most was the deep well of feeling that reared up again while the surgeon pinched and prodded and drew his green marks on my skin. “You’ll always feel some discomfort and find some swelling when you use your right arm. That’s your new normal.” My surgeon then launched into his “everyone is asymmetrical” speech which I wasn’t sure was to make me feel better or him.

Joey later said my face screwed up, and it did. I fought back the surprise tears that reminded me of what was taken from me, the onslaught of procedures and chemo drugs that I endured. What a crazy freaking last year it has been.

I saw this early April surgery as a declaratory period at the end of a screwy sentence. Let’s fix this right breast and get feeling better, oh and while we’re at it, take out this port that I hope to never need again. Julian’s little head just bumps it all the time and it hurts to sleep on my side like I prefer to.  I wasn’t prepared for a “well that’s just the way it is now” talk. How ironic is it that most of the sensation in my breast has been taken away, but what is left is discomfort and pain. It would be preferable to be completely numb I think.

Mostly I am grateful. The breast cancer was only on one side and even though the opposite side is the breast that didn’t heal right initially, and is the one that causes the most pain, I know I made the right choice in having a bilateral mastectomy. I know that if I can help it, I would never want to go through chemo again. I know that I would be constantly worried about developing cancer again, had I left any breast tissue. This is the hard cold reality of the triple-threat of having a BRCA 1 gene mutation, triple negative cancer and family history of breast cancer. An 85% chance of a new tumor is nothing to sneeze at. Even though I am still processing great loss, even though I am uncomfortable, even though I can’t lift and stretch and use my body in all the same old ways, I am still grateful.

I am here. I have lots more to learn and experience, to do and to love and to share. You can simultaneously feel gratitude and loss, appreciation and pain. Isn’t this life so perplexing and complicated and beautiful? The early spring in the northeast reflects my inner landscape. I have weathered so much, I feel muddled and battered …but underneath, just under the dirt there… there is a feeling of renewal, of reaching for the sun.

shoots

Pick me up Mommy!

Tell a Mom not to use her right arm. Tell this to a Mom with a 4 year old and watch her face. I am one of those people who is never content to do just one thing at a time. While the onions are sauteing, I can get the laundry going, start a fire, wipe a nose, answer a text and find my husband’s wallet. I will get back just in time to perfectly translucent onions ready to proceed with dinner. Multitasking is an art.

For those of you following my journey, you may recall that soon after my double mastectomy last July, I developed an infection in my right breast. I had this major operation and was booted out of the hospital in less than 24 hours by a cold and unfeeling nurse with no real discharge instructions.  No one told me that I had to stay on antibiotics for the full length of time that I still had drains protruding from my sides. Coincidentally, the pharmacist only filled my script for a 6 day supply of antibiotics. (Never heard of that before and not sure why they didn’t give the full amount I needed.) I was suppose to have drains in for 2 weeks, but this was stretched out to 4 because of the infection. Was this an oversight by the surgeon, the hospital or the pharmacy? YES!

So, fast forward almost 8 months…. here we are. My right side is filling up with fluid and is quite painful. I saw the plastic surgeon last week and he ordered an ultrasound. The only way to fix this problem is to have another surgery to redo the breast that never healed properly. In case you are wondering how this works, the breast is recreated with a layer of Alloederm which is intended to adhere to your skin, and creates a pocket to hold the breast implant. In my case, the Alloderm didn’t properly adhere on the right side and my body is reading it as foreign material, creating all this extra fluid. Aside from the pain I look pretty lopsided, with one side looking fairly normal and the other teetering on being Pamela Anderson-esque. For the short term, the surgeon suggested I not use my right arm. Pshaw!

My second and hopefully last surgery in this breast cancer saga will be on April 8th. I am told it is way less invasive with a shorter recovery time than the mastectomy, which is great news. I also got the approval from my oncologist to have my port removed at the same time. Usually they like cancer patients to keep them in for a year after treatment, but given the particulars of my case, I’ve been given the green light. I am thrilled about this and see it as a big thumbs up to close this chapter of my life and move forward with the rest.

I know my blog has been fairly quiet, but as you see I’ve had quite a lot on my plate. In case you are wondering, I’m still writing. In fact, I am currently taking a writing class with Martha Frankel and I am starting to comb through the work I generated from this blog. Many people have suggested there is a book somewhere in here. At first mention, it was hard for me to look at this body of pain and suffering as a book that could help others. The more people began to reach out to me, the more I realized that my journey is about more than breast cancer and my particular brand of struggle. There is a unifying pulse that speaks to the human condition and our thirst for something more. I don’t know what else to say about it right now, but if I write it… will you help me share it and bring it forth to the world?

melissa n julian

Gifts You Can’t Find on Black Friday

I grimaced inside when in an attempt to comfort me, people would mention that there would be Gifts, unknown to me now, that this cancer diagnosis would bestow upon me. How could any of this be seen as a gift?! For my readers who know of someone newly diagnosed, please note that this is not something easily heard, not a warm and fuzzy sentiment to wrap your loved one up in. Perhaps at a loss for what to say, just be present. Ask, “What can I do right now to help you?” Let them know that you will be there for them in any shape or form… a call at some odd hour, a warm meal, a friend to help drive them to an appointment, a research assistant when terms and treatments are suggested that sound confusing… there are many ways to give and be present without idealizing illness, without projecting pity, and without marginalizing their experience.

Now I wish to speak to those of you who have suffered a great deal. Cancer is not a prerequisite, and many of us have known suffering, so pull up a chair… I am in the final 6 weeks of a total 5 month Chemotherapy regimen, and six and a half months have passed since my diagnosis. Let me tell you that there WILL be gifts. You will find the most unexpected and surprising gifts if only you just open up your mind and your heart, and most importantly, that you are there on the other side of the door to receive them. This flip side of giving has been a big growing lesson for me. In order to experience these gifts, you have to 1. ASK, and 2. open to RECEIVE.

The “Ask” I speak of is not like sitting on Santa’s lap and running off a list of material things you wish to magically appear under the proverbial tree. To ask is to be seen. I know that sounds confusing, but what I mean is that you must let down your guard of being afraid of judgement for your vulnerability and suffering. Look around you right now. What could make your life a little more simple, more comforting? What could bring you ease or uplift your spirits right now? Company? A bath? Someone to wash your dishes or do a little shopping? Be willing to be seen and ask. Don’t assume you are all alone in this. It can be so hard to reach out of your suffering, but trust me, you must try. We NEED each other. Yes, you could go it alone… but you will deprive others of the experience to give of themselves… to share their Light with you.

For me, to at first Receive was like being asked to dance in the 6th grade, awkward and uncomfortable. It was hard to let down my self judgment and is still something I work to keep in check. Yesterday for example, I was day dreaming about doing my taxes for the year (yes, I’m strange!) and in this daydream I wrote, “Charity Case” as my profession for 2014. Quickly snapping to, I silenced that inner critic and judge and shifted to gratitude instead of feeling sorry for myself. A friend reminded me yesterday of how much it means to her to be able to give. Me being on the receiving end made her feel so good. You forget that when you’re feeling vulnerable and low.

I’d like to share just a few of my unexpected Gifts… While I am SO grateful for the donations that have helped me to pay the bills and endless co-pays, and for the generous offers of various healing sessions, for the food donations, and people helping me get to appointments and bring over warm meals, I am talking about something else entirely. I wish to share with you a few gifts to the soul that will stick with me forever… the unexpected treasures…

My Mom and I, who were so close when I was growing up, have grown closer through this. I think when I went off to college we started drifting apart… maybe she saw me as a strong and capable young woman and thought I didn’t need her as much. She got into dog breeding with her new husband and though we were only 20 minutes away from each other, weeks would go by without us really connecting. Through these difficult months I needed my Mommy and she has really shown up for me.

My biological Dad and I have had a tumultuous and strained relationship. I felt like he didn’t know me and at times that I was unlovable to him. Well… Hi Dad. He has been reading my blog and writing me emails, opening and sharing parts of himself, like his views on spirituality, and I feel closer to knowing him and being known to him.

Other family members too… my Dad who adopted me, my Sisters, my Stepmother, my Aunts, my Stepfather and Step-Grandmother, my In-laws, all rallying around me, praying for me and checking in on me. In wellness, at it’s best, you assume your family loves you and cares for you or at the very least you tolerate each other. In sickness, you KNOW you are loved.

I am grateful too for my Sisterhood of Beautiful, Strong and Soulful friends. I had always cherished our good times of laughing together and creating great memories, but I think the greatest gift was being able to cry and be vulnerable with these women, and being held with such grace and care.

My relationship with my Husband has strengthened too. I had always thought of myself as the organized one, the Do-er, the caretaker. As I have had to take a back seat to a lot of our domestic tasks, I have made room for Joey to step up and show his capability and strength. He has always been a loving husband and my best friend, and now I know what a wonderful caretaker he can be. I have seen a new strength in him that was always there, but perhaps not fully realized and appreciated from my “Do-it-all” perch. Thank you Darling!

The last surprising gift that I will offer today, is that my vulnerability and sharing has reached into the hearts of others. I use to write endlessly in my teens and twenties, then life happened and it dried up. This blog has been an outlet, a release, and a voice for me. I think in some small way I may be helping other people on both sides, in wellness or in sickness. While it Gives to me, it Gives back and that helps me feel useful and gives meaning to this experience.

And the best part… I’m still in it, so I know there will be more gifts to unfold as time goes on!

my flaming heart web copy

Canary in a Coal Mine

I’m not sure I would have said this a year ago, but I’m glad it was me.

Could I have been strong enough if it were my sister, or my mother? I’m glad I found that lump early and having removed all breast tissue, my run-in with hereditary breast cancer will be put to rest shortly after this 2014 year ends.

However, I would be naive to believe that what is to come soon after this will be a path lined with roses. You see, my family history prompted a genetic test, and that is how we found my BRCA 1+ status. Because of that telling lump, we found out that my Mother too shares this genetic mutation.

We’ve all heard that history repeats itself. I’m grateful this won’t be the case this time around. Breast cancer will not take my Mother away from me, the way she lost her own almost 38 years ago. Soon after my chemotherapy wraps up, Mom will have her prophylactic double mastectomy. It was a difficult decision to make, but after seeing what cancer has done to her mother and now her daughter… what are the alternatives? Doctors told her she could subject herself to biannual MRI’s and Mammograpy. Trouble is that every exposure to radiation creates a risk of kicking that BRCA gene into action.

The What Ifs are just too great here. What if by the time she were to find cancer, it would be too far gone? What if at her age she couldn’t handle the chemotherapy as well? Why go through chemo at all if she doesn’t have to? What if she were lucky enough to fall in that narrow margin of BRCA+ people who don’t ever develop cancer? What if?

And while we’re asking questions, how will I watch my Mom go through this while my scars are still so new? I am afraid of facing again what my body and brain have barely begun to process. So much had been numbed out in the post surgical narcotic haze that kept me from feeling too much. I kept looking forward and marching on, and now when I look forward, I see this same surgery… and I’m terrified all over again.

My decisions for surgery were weighted heavily by my desire to be around to raise my young son, among other reasons. I am grateful that Mom is taking a proactive choice too, and while her child rearing days are over, her children and grandchildren need her around for a long time to come. In both situations, hers and mine, these breasts are given in sacrifice, and in return we are hoping to increase our days on this earth. We can only hope…

I will be there for you Mom, just as you have been there for me through all of this. Remember when I came to you 9 weeks post-op and told you that I was finally starting to feel comfortable in my body again? You will get there too. And when our scars have healed enough, we will go get some awesome looking nipple tattoos together. (or maybe some other cool tattoos to commemorate our sacrifices and our fight to carry on in spite of it all!) Everyday we’ll heal just a little more…

IMG_0338

I Love Boobies

There is nothing I love more than a big juicy hug from a big breasted woman. There is a little sigh of relief that happens inside the nervous system as I am enveloped in warmth and softness and comfort. It might be because my Mom was well endowed and maybe reminds me of her, or is it something more?

I didn’t always love boobs. In fact, I remember being about 9 or 10, lying on my stomach on the floor, watching the Smurfs or some other Saturday morning cartoon when feeling the first annoying pinch of my little “buds”. Remember those “mosquito bite” days, early on when the breasts just start to grow? I hated how those embarrassing little bumps made my tank top stick out and how suddenly people started looking at me differently.

Then 3 years later, I LOVED having boobs. Problem was, they were never quite up to snuff… not big enough compared to some of the other girls my age. I wanted a padded bra so they looked a little more like “real boobies”… something to actually fill that bikini top.

Not big enough, too big, too droopy, too pointy… the poor “Girls” sure do take a lot of criticism. They are oogled and pawed at (Hello, my face is up here!); suckled by infants and babes until they are sore and leak at awkward moments. –I remember returning to work after my maternity leave and rushing back home to feed Julian during lunch breaks. I knew that women sometimes experience a “let down” of milk if they hear another baby cry. NOT ME… it was the sound of the fax machine that got me! Boy was I surprised!

During this month of Breast Cancer Awareness, I ask you for just some simple Breast Awareness… and breast love. Give your friends a full frontal boob to boob hug. Feel the soft give and tenderness that fills in that area in front of your hearts. See what memories and feelings that brings up in you. Send some loving thoughts to your breasts when you’re in the shower…. Genuinely, no matter how they look.

They have always been beautiful and perfect just as they are, just like you.

IMG_0448

Slowing down

Something is happening to my brain and my being. I am slowing, yet I can’t seem to stop. Sleep comes in 4 hour windows. I am anxious and afraid. I am softening. I cried with someone I barely know today. I let in a stranger. She came at me from the side so gently and said, “Are you ok”. Sort of taken aback, I replied, “Yeah, I’m alright.” When she said she had gone through this too, 16 years earlier and had two young kids at the time, I knew she knew. The head scarf is a dead giveaway. Half the ladies at the JoAnne’s fabric shop looked at me curiously. The other half looked away like I was a too young mirror of what they never want to think possible. I get it.

This lady though, she just SAW me and comforted me in a way strangers can rarely do. There was a brief communion of souls in the yarn aisle and then we parted.

On Monday the bell rings, ding! and I am face to face with AC chemo round #4. The last and final round before the supposedly easier Taxol regimen begins. Rejoice right? It’s the last one…

I check out in my mind when I think of going back there. Hmm, Hmmm, Hmmmmm my mind screams. I am lying on my back on a soft plaid flannel blanket, spongey grass underneath, looking at the most beautiful blue sky, warm breeze fluttering my shirt. Oh boy…………

It’s not that sitting there is so bad. There is the most lovely and kind male nurse that really makes you feel comfortable. Throw in a back rub and a mud mask and it might as well be spa day. It’s not that.

Like I said, something is happening to me.  It doesn’t feel good to be in my skin and I can’t escape it. There is no reference point, no status quo for me to stop and rest… like the inhale keeps, keeps, keeps, and then I have no idea where to land. And when I’m too tired to pursue my assorted projects of distraction, I stop and I feel.

Exhale