Rules are meant to be broken

(The following is the speech I gave at the Providence Comprehensive Breast Center Tea 10 – 18-10)

I am a rebel. I wasn’t the kid that got into trouble – my moral compass was too strong and my parents were WAY too strict, but I have a really hard time following rules. There just always seems to be a different way of doing things than the one everyone else sees. There is an element of surprise and creativity it it…I am  unpredictable…you never know what I will say….but growing up I often felt alone in my path of exploration. This lead to numerous  detours that were frequently beautiful and certainly unforgettable but often tedious and overly drama-filled.  Recently my rebel life took control in order to teach me some BIG cosmic lessons about taking the road less travelled by introducing me to my ultimate new rebel acquaintance – cancer.

Not that anyone is “supposed” to get cancer of any sort but I DEFINITELY wasn’t. Previous decisions to not follow the beaten path resulted in me having children -and breastfeeding them -really young.  My career choice of working in the outdoor industry broke all the rules about growing up and having a “responsible” job but left me with lots of play time and in great physical shape. I actually followed all the rules about not smoking and eating right which SHOULD have resulted in ZERO risk factors for having breast cancer at the age of 39. But CANCER decided to forge its own creative path and found an ideal match in me and my right breast.

True to its host, this cancer didn’t follow the rules ….I had DCIS which is SUPPOSED to stay relatively small, SUPPOSED to be found by a lump or a mammogram when you are older, and SUPPOSED to be easy to treat. But my rebellious nature had taken hold here too, and the DCIS in my breast was EVERYWHERE, leaving less than a millimeter of margin before it was in my chest wall. And it was a sneaky rebel….there was no sign that it was there, no symptom, no lump, no nothing until the mammogram found it. Should I have been surprised when the doctors told me DCIS never gets this bad…that there were so few cases of it being this extensive?  The only tried and true protocol for treatment was too cut the whole thing off and turn my chest into a radiation induced dead zone. Now, I was not only a freak, but I was a freak with one boob.

Having spent so many years feeling like I alone in my unusual perspective and approach to life, cancer  was the start of meeting many people who were also rule breakers and rebels.  My doctor didn’t follow the rules because in order to get moving quickly, she told me I had cancer over the phone, while I was at work, on a Friday night. My girlfriend who was working with me when I found out didn’t follow the rules because her first comment when I told her was “Damn it!  Now you are going to get a boob job before me!”

When I was diagnosed I told Neil,  boyfriend of 2 years,  that he didn’t need to stay with me since I didn’t want to burden him with my diagnosis and treatment. Another rebel of a sort, he told me to shut up and went back to watching tv  — and  started shopping for a house while he sat with me in the hospital the day after surgery. We moved into our new house together the day before my last radiation treatment 4 months later.

I guess my son Eric forgot to read the imaginary rule book I was handed about the  scary potentials  of a cancer diagnosis because he swears he was never worried that I would die or stay sick. He was also the one who hugged my “real side” and my “fake side” and said I felt the same which is a stretch for a kid of any age.  But my adult daughter Megan didn’t follow the rules either and instead of being there for me the diagnosis was too much for her and she retreated into disinterest and avoidance as I went through the biggest event of my life. This is an act which she regrets to this day  and never misses a chance to tell me how much she loves and supports me.

Contrary to what I might have guessed I would do in this situation, the day before my surgery I golfed with 7 of my best guy friends and played my best round of the year. This was an act of defiance on my part and a stepping out the box for these men, who uncertain as to how to show much they cared took me out to play and bought me beer.

The day of my surgery  found me on the rooftop of the parking garage engaged in a brief Native American  healing ceremony  and as I walked through the doors of the hospital smelling of sage smoke, I am certain that some people wondered if I wasn’t breaking some LEGAL rules before my surgery!  And as I lay on the gurney waiting to be taken into the OR with my family around me laughing hysterically at all the stupid things there are too laugh at under such stress, I am certain that we broke social codes about appropriate conduct before a “serious event”.  I am ever grateful to the nurse let Eric  climb onto the gurney with me so he could hold me while the injected the “sleepy juice” into my IV…certainly a departure from the norm for the hospital, nurse and the normal behavior of 16 year olds!

There was “bad” too….after surgery my body rebelled and rejected my sutures which resulted in months long healing process and delayed radiation treatment.  Tired of the whole situation, my body refused to play nice with radiation which resulted in a 3^rd degree burn from day 7 with scaring that remains with me to this day.

And ultimately, my insistence that I do this my own way left me deciding not to put my body through more and I decided against having reconstructive surgery. I also quite the drugs they gave me to reduce my reoccurrence risk but that were turning me into a blob.  Sometimes the decision to not get a new boob feels like the biggest rebellion yet. I feel like an alien in our youthful fashion and appearance oriented culture.  Never mind that on the outside I look like I have two boobs…I have to search hard for bra’s that don’t look my grandma’s that can be converted to having a pocket for the prosthesis.  I can’t wear anything that has a neckline unless I use double-stick tape to keep it in place.  And shirts to wear in yoga?  Ridiculous. After the day that my prosthesis fell out of my top during my yoga class I became much more cynical about the so called yoga attire sold in magazines. As a dedicated yogini, I had thought this was my worst nightmare…. A quiet room, the only sound the deep uji breathing of the people around me in headstand, then PLOP!  the sound of silicone hitting the wood floor. But true to my rebellious nature….I got the giggles and left to put myself put back together.

Carving my own path meant that I became a local and national Reach To Recovery volunteer  for The American Cancer Society – position that puts me in contact with lots of women diagnosed at a similar age. The national program serves women in remote communities and I have meant some serious rebels there. One of my favorites was a lady in a town so small it only had a bar and a post office.  She worked as the town garbage woman during the day and then at the bar (which she owned) all night. One time one of her customers commented that she was bitchy to which she responded “Yeah? Well I have breast cancer.  What is YOUR excuse?”. To the customer that fell asleep at the bar she had this to say:  “Buddy, I had chemo yesterday and you don’t see me asleep on a table!”.

I have met some tough amazing women who have had to fight the odds in order to steal another year, or two, or ten from the grips of a diagnosis that seemed at first like a pretty hard rule to break.  I have met women who because they broke the rules about not talking about “that kind of stuff” changed the way our healthcare system, our government  and our family and friends talk about and treat us as patients and survivors. I have met doctors who took risks, bent rules and rebelled against the norm in order to pursue better quality of life for the men and women they work with.  I have met men who dropped the rules about being macho in order to wear pink to support the women in their lives and boys who wear “I love Boobies” bracelets because they support breast cancer awareness and NOT because they just really liked to be titillating (pun intended!).

I continue to be in awe of the strength and courage that this disease brings out in each one of us that have been impacted by it. I have found strength, support and solidarity in the very same place that I rebelled against so vehemently. My mom was the person who I told I had cancer and I will never forget how brilliant blue the sky was as I listened to her cry on the other end of the phone. She walked every step of this path with me and that was the only time I heard her cry.  I am sure there is nothing worse than hearing that your child has cancer.   And who knew that my main source of everlasting frustration as a teen and into adulthood would become my biggest support person because he had walked a similar path? My father Bob, a prostrate cancer survivor, became a volunteer with the American Cancer Society even as he continued to face his own challenges in coping with the repercussions of his treatment. How brave to cheer others on when he is often angry, frustrated and grieving his own losses. How immensely strong he was to face his daughter’s breast cancer and be there to talk about intimate things not normally shared by father and daughter.  And though he would never call himself as such, he too is a rebel who befriends every cancer patient no matter how sick, crabby, or in denial they are in order to help them find their own inner strength.

Being a cancer rebel is still hard even surrounded by such amazing people. As a person diagnosed young I find few women who face the same issues of dating/relationships, trying to manage family & career & cancer exhaustion, and especially all body image pieces. I speak out, and up for other young women facing similar issues. I carve my own path that is every bit as full of twists and turns as my pre-cancer life was. I began writing about my experience, as many who have been through this do.  My blog Becoming Amazon,  integrates the lessons I have learned throughout my whole life in order to reach people who may not be cancer survivors but find themselves questioning the “norm” in the same way I always have.

I was recently published in a free e-book called “How We Became Breast Cancer Thrivers” and found myself amongst more than 40 women – most of whom were much older and far more successful than I. At one point in my life I would most certainly labeled most of them very “normal”  opposed to “rebellious” but now I know they  fought off cancer too.

I was still a little worried about my submission, which was clearly NOT normal, safe or remotely close to socially correct. The editor Beverly Vote wrote me a note regarding my submission that said “ You have raw authentic courage and your message will be thought-provoking for many, which is a marvelous thing… shake some readers out of their safe pink box”. Hmmm…with all that had happened to be in the past couple years, I thought that maybe I was done rebelling and just would get to live a quiet, very normal life. But instead I see that the road before me continues to be one of breaking rules, shedding light into dark corners and being the sort of person who continues to look for other ways than the norm.  Only now I do this as advocate for a larger cause….I join the ranks of fighters, rebels, warriors and rule breakers that are seeking an end to this devastating disease.