My personal breast cancer story...
Every year, October sneaks up on me and I am reminded of how breast cancer affects so many women (and men) all over the world. I share my experience in hope that it will resonate with anyone who has been touched by this disease. This is an excerpt from a speech I gave at the Susan G. Komen luncheon in Sarasota, January of 2012:
I am one of the lucky ones. Whenever I tell my story, I feel as though my experience pales in comparison to others I have heard and witnessed. Everyone's story is unique and personal, but there is a common thread of humanity that knits our experiences and makes us united. This is the beauty of it.
No one goes through the experience of having cancer and emerges the same as they were before. In my case it served to make me stronger and more vulnerable. I am grateful for both. Through my vulnerability I learned compassion. I learned to ask for help and was blessed to have it...my family and close friends were there for me..unobtrusively, thoughtfully and completely. Yes, I survived…but the experience actually has taught me what it takes to thrive. I know it sounds unlikely, but being a breast cancer survivor has become an essential part of the fabric of who I am... and I am thankful for that. Ten years later I can see how it was the first of several life-changing upheavals that made me who I am today.
At the time I was a fashion designer with a very demanding career, two children and not much time for myself. My diagnosis came during a particularly hectic design season in October of 2004. Funny...I say "diagnosis" like it happened all at once. But in reality it was a long drawn out process that took months to unfold. Most who have traveled this road know exactly what I mean. First, it is the "questionable" mammogram. Then the follow-up mammogram, that leads to the ultra-sound which is also inconclusive. Oh and three afternoons away from work. And dressing, undressing, waiting, more waiting...getting literally poked and prodded and having waaay too much attention being paid to a part of my body that used to be fun and even useful in the past.
I was, and still am, a very busy lady and had put off getting a mammogram for too many years before the fateful day I received the news that something was wrong. That was my first mistake. Fortunately, I still was at stage zero (DCIS-ductal carcinoma in situ) and no real harm was done...we caught it early. My life was never in immediate danger. But it was still agonizing.
Cancer is a deep-dive into the medical abyss, no matter how excellent the care. After multiple x-rays, an ultra-sound, an MRI, two needle biopsies, and 2 lumpectomies, I still was faced with having to choose a mastectomy. No matter how casual I sound now, I can recall the first time I heard the "m" word—it went through me like a shot. I took the call in my office on a rainy November, hoping that the results of my lumpectomy would be the end of this ordeal, but instead it was just the beginning. I hung up the phone and rejoined my design meeting stunned and completely distracted. I felt like a woman in a stupor, a soulless body filled with dust.
But I was well-practiced at putting things on the back burner and before long I just became absorbed in the moment and postponed thinking about it until I got home. Then I probably collapsed and unraveled in the safety of my own four walls.
I know that having great medical care is important. It took me a little while to find the right combination of doctors. I lived in Hamilton, Massachusetts then, which is about an hour from Boston where my initial diagnosis and follow up care took place--if traffic was merciful. As I shuttled from clinic, to hospital to doctor's office, I tried in vain to keep my equilibrium and sense of self. I did not want to become a simple statistic, a number on a chart. Slowly I began to sense that was exactly what I had become. The decision-making was a really hard process, even for me, who makes snap decisions at the drop of a hat, based on gut instinct.
The next step was to research the options for breast reconstruction. My first ever contact with a plastic surgeon made me feel:
a. stupid for asking questions
b. inexperienced for never having had a mastectomy before (really?)
c. vain for caring what I would look like afterwards
I recall feeling pretty defeated after that appointment, but then determined to find a better option.
I decided I needed to do more research and get a "second opinion". So I enlisted the help of friends, even saw a therapist to talk through my feelings and eventually was steered towards a team of doctors right in my back yard. It turns out Salem Hospital, 20 minutes from my home was excellent and my doctors were amazing. The surgery was long... 9 hours, but the beauty of it was that the mastectomy and reconstruction took place as one event, so when I awakened from anesthesia the deed was done. I knew very well what was at stake so my first words as I came to, thick with nausea, were: " and the lymph nodes?" ...AOK. Thank goodness. So I went right back to sleep and stayed there for the next 15 hours.
The other remarkable thing about this hospital was that they embraced alternative healing practices. Not only did they allow a Reiki therapist to work on me just before surgery and then immediately after right in the recovery room, but they billed me for it right through the hospital. I believe that this was one of the factors that helped me recover so quickly. And gave me hope that things are changing in the field of Western medicine.
My plastic surgeon was (and is) extraordinary. She studied to be an artist until she decided to make a left turn into medicine, bringing her keen eye and delicate motor skills to the field of plastic surgery with a specialty in breast reconstruction. So our appointments were all about how she would reshape my figure and construct the "seams" of my new topography. She showed me pictures and looked me straight in the eye when we talked. She answered dozens of questions with patience and keen intelligence. As it turned out, I healed beautifully and got the breast reduction and uplift I had secretly wanted for years. And now, over 10 years later I am free of cancer and healthier than ever. And she has become one of my closest friends.
I was oddly happy in the weeks leading up to my surgery. Instinctively I knew that this respite was something I desperately needed. I was never afraid. Why? I have no idea...I guess because I felt I was in good hands, I had been reassured that the cancer was very early stage, and I guess I just had faith. Strangely, it felt perfectly natural.
Little did I know that this leave of absence was a precursor to my permanent leave that occurred 3 years later when my company closed. But thats another story! At that time I was on the go constantly and I unknowingly had set the ridiculous pace that was now expected of me. I would never have slowed down if I hadn't been forced to.Today I see several situations in my life that underscore this same theme: my spirit needs one thing and my personality insists on another. In the end circumstances prevail, and I am compelled to try another route. Reality always catches up.
The change of pace inevitably came. My first couple of weeks at home recovering were spent gently existing...just BE-ing. For once in my life I didn't have to do anything and didn't feel compelled to accomplish anything except get better which my body had to do on its own. No amount of forcing or cajoling would change the fact that I needed to rest. But it wasn't hard to do that.
I am one of those people who does not tolerate anesthesia very well. In fact, it kicks my butt. Every single time. It took me longer to recover from that than I expected. I was somewhat dazed and exhausted for the better part of a week. While I was uncomfortable (my friends remind me I would enter a room bent over in a pathetic posture protecting my injured chest), I managed the pain by taking only extra strength tylenol and lying down for days. I cannot take anything stronger because I get severely nauseous and dizzy from pain killers. I didn't have the strength to read, and zero interest in TV...the most entertainment I required was listening to the birds outside my bedroom window or warming myself in the sun outside on my deck.
I found the lack of stimuli to be very Zen. Hours drifted by and I noticed beautiful small things...the shadow of a bird's wing across my second floor window. The changing course of the sun as the day went from morning to evening while the light changed color from my vantage point upstairs. Subtleties that I would have surely missed as I rushed about my normal days. As we all surely miss every day.
Medically I was very lucky. The size, type and location of my cancer enabled me to get by with no further treatment...no chemo, no radiation, no drugs of any sort. To me, surgery is the easy part...to have any foreign substance in my body systemically would have been much harder to deal with. This is why I say I had it easy. I give a modest bow to all who have endured more.
Once I started to feel better I made some moves that I am happy for to this day. First, I had lunch with friends. During the day! Unless you have worked 10 hour days for 20 years you don't know what a revelation this is! I reconnected with people who had meant so much to me, but I had seen only a handful of times in recent years because I was working all the time. Today my life is rich with just this type of socialization, so I know I have made the right choices.
Second, I started to paint again. Just mixing colors and feeling the brushstrokes was healing for me. I admit my inner "alpha" got the better of me and before my leave of absence was up I had painted a collection of work and had an opening in my new gallery that we had just set up in our summer cottage in Gloucester. All the pieces had uplifting messages and bright colors that expressed my newfound peace of mind and happiness. This was the beginning of a personal journey that marked the first foray away from my identity as a fashion designer.
Third, when the doctor gave me the all-clear, I headed to the gym and hooked up with the best personal trainer I could hope for. I told her my condition and she developed a Pilates routine for me to rebuild my strength and range of motion. She now has made it her protocol for recovering mastectomy clients and we even got written up in Pilates Style magazine back in 2006. She has also become a close friend. That lead me back to yoga which is now an integral and essential part of my life.
People who know me well know I prefer to be happy no matter what. I work hard at it. I don't like to dwell on the negative. I try to find the silver lining in ever case..and if not that then I look for the lesson to be learned. This experience gave me plenty in that department. Lessons were everywhere and it gave me so much to be thankful for.
Every situation offers plusses and minuses...
In the plus column:
--I learned very quickly who my true friends are...and they are many.
--I learned how to ask for help and not be ashamed to receive it.
--I gained 2 amazing new friends (surgeon, trainer) and have such respect for these women who work hard and give so much.
--My priorities quickly shuffled into place.
Things that used to be so important became less urgent and my health, my peace of mind, my family and friendships now take top priority in my life.
Today I am a changed woman. I am living the life I have chosen...not one that has chosen me. I am surrounded by interesting, funny, curious, creative people who enrich my life immensely. I am healthy, strong, and at peace and when I am not, I have yoga and meditation to smooth out the wrinkles. I see beauty every day. Nature astounds me. New horizons are always right around the corner.