My personal breast cancer story...

October 20, 2016

 

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