'Yeah, I got this…' I thought, as I crossed the threshold of the tattoo parlor fifteen minutes early for my appointment. I was nearly forty. The BIG 4-0 and here I was doing something that most people do as rebellious teenagers. I was getting inked.
As I sat down across the table from Tom, a guy who was probably young enough to be my son (well, if I had had a child in high school) with my sketches held firmly in hand, I looked into his hardened blue eyes, his face, seemingly the only part of him not covered in ink looking back at me with mild irritation.
No one likes a virgin, I mused.
I tried to act cool, like this was no big deal. I've always been a little edgy; I could play tough if I needed to. I told him exactly what I wanted and where I wanted it. A black tribal shark, I explained, curling around my left anklebone, because sharks have adapted, thrived, and survived throughout history. And a Latin phrase, "Fluctuat nec mergitur" running up the outer edge of my left foot, which translates to, 'She was tossed by the waves but she did not sink.'
He glanced at the images I had brought with me. After studying them, he left his stool briefly to draw his professional version of my simple sketches on the sheer transfer paper that would place the markings on my skin for him to etch and fill in. While he was gone I flipped through the portfolios of the four tattoo artists employed by the shop. Throughout my career in the fashion industry I’ve flipped through dozens of portfolios. I even have several of my own, but the portfolios I typically review are filled with sketches of faceless, wisp-thin women with ridiculously broad shoulders and impossibly long legs. They are often accompanied by fabric swatches, color schemes, big ideas, and even bigger dreams. These portfolios were different; they were alive, filled with real people and permanently colored flesh. Each had a meaning behind the artwork they so proudly wore and I was eager to be a member of the club. I wanted my ink. I wanted to tell my story. I am forty. I am fierce. I am a fashionista...and I am a survivor.
My story begins in May 2007, smack in the middle of my life. I was a thirty-eight year old mom of two young boys, Peter age eleven and Connor age nine. I worked in the design offices of an internationally known fashion company. I had a husband, an SUV, a big dog, and a home not too far from the beach. I had a family, friends, and obligations. I had plenty of joy, pain, laughter, and frustrations in every area of my life, as do most married working mothers. My life was complex. My cups were full. Then I found a lump in my right breast. Shortly thereafter came the diagnosis that would forever change my life.
Breast cancer, stage IIA.
My surgeon, at the time, assured me that breast conserving surgery was the industry standard for my type and stage. I couldn't even utter the word 'mastectomy' without having a panic attack. I made an appointment for a second opinion just to cover all bases. I was stunned when the second opinion surgeon felt the best option for me would be a bilateral mastectomy. She spoke of getting rid of my breasts no differently than tossing out an old bra. I understand that they meant nothing to her but I was quite fond of them. I will admit, I had a nice rack. I was still deeply in denial about how serious this was. So, like a child that gulps down the bitter tasting medicine and runs back outside to play, I wanted to get my treatment over with as quick as possible and get on with my life. I went with my original surgeons opinion for breast conserving surgery. As I was recovering from my lumpectomy, I began study a new language of seemingly foreign words now being used in relation to me. Words like, tumor markers, estrogen levels, pathology, biopsy, amplification, hormone receptors, nuclear grade, adjuvant therapy; the complex terminology I had only just begun understand, could fill a dictionary. As I began to plan and gain some understanding of my medical treatment, the company I had been with for five years let me go. Great - because things weren't complicated enough I now had to negotiate severance, COBRA my health insurance coverage, and review the details of long-term disability.
So, what does an unemployed fashionista with breast cancer do?
Well, I took a deep breath and broke everything down into two categories; what I could control and what I could not control. I decided to use this opportunity to solely focus on getting well, indoctrinating myself into my new reality. I endured a grueling treatment schedule that included sixteen weeks of dose-dense chemotherapy, thirty rounds or so of radiation and a year of monthly infusions of a new drug called Herceptin. I lost hair and I gained weight. I dressed cute for chemo and I applied mascara to my one last remaining eyelash. I went to cancer yoga and I never left the house without a hat ... or lip-gloss. I may have been a patient but I refused to look the part. I boldly accessorized. The classic terry cloth cancer turban? Nope, not on this chick's head. I had swag, style, and I realized there is more time to play with make-up when there is no hair to style, no legs to shave.
I begrudgingly gave fourteen months of my life over to a disease. I had no choice in the matter. I had kids and I needed to stay around for them. Not fighting was never an option. A dear friend recently reminded me, I had cancer but it never had me. So each day, as I got well, the designer in me began to redesign her own life. I wanted to leave my mark, I wanted to help other women through the process I myself had to navigate so blindly. At the time of my diagnosis I realized there were limited resources for young women that have been given a diagnosis of early stage breast cancer. We were not the 'target market' for all things breast cancer, but the more time I spent time in Cancertown the more women I met like me.
We compared experiences, flashed our scars, dished on doctors, had a million WTF's regarding the side effects of our prescribed drug therapies and wondered frequently why there weren't any resources that openly and honestly addressed what treatment was really like for us, the young survivors of early stage breast cancer. On the one hand were the books on the market that tended to refer to cancer as a gift (ummm, it's not) and gloss over the particulars of surgical recovery, chemotherapy, and radiation as if it was just something you had to endure, like a blister. On the other hand there was the Hollywood approach or as I like to say, the Lifetime movie depiction of the breast cancer patient being oh-so-stoic during the diagnosis, her head in the toilet endlessly vomiting immediately after chemo and a profound inability to mother her children or put away the groceries. The reality? It's somewhere in between. I bawled my eyes out when I was told I had breast cancer, I never got more than mildly queasy thanks to my doctors very generous supply of anti-nausea medicine, and I managed to mother my children, cook, clean, and put away the groceries. Were there bad days? Absolutely, but thankfully the good days far out numbered them.
As my treatments came to an end I understood how truly fortunate I was to have found my cancer when I did, early, before it had a chance to invade my body further. I wanted to give something back in return. I began volunteering with Hadassah's Check It Out early detection and awareness programs aimed at high school girls teaching them the importance of self-breast exams and how to properly do them. I spoke at cancer centers, schools, and health fairs about the importance of early detection. I wrote and published a book targeted to young women with breast cancer. I openly discussed what it was like to have to talk to your children about being sick (keep the conversation honest and age appropriate), to be the bald mom at football pick-up (a bit chilly), to attend a school conference with a wig on your head at the request of your child (hot and uncomfortable), to have another child tell yours that you're probably going to die (heart-wrenching). I became much more conscious about what I ate and eventually my three mile walks every morning turned into three mile runs and becoming a runner might just be the most extraordinary thing. I’ve been talking and writing for nearly my entire life…but the only place I ever ran to was the bathroom.
Mentally I was tough, physically I was getting strong and lean. I found a new job, a much better job. I made a bucket list. As I came upon my second cancerversary my fortieth birthday was looming just a month later, so I picked a date midway between those two milestones and made an appointment for a tattoo. My inner badass was beaming.
When Tom came back he had me sit up on an elevated table and propped my leg on a worn blue vinyl cushion. He swabbed, shaved, and prepped the area. He placed the transfer paper with his rendition of my sketch and lettering on my foot and ankle, slowly peeled it away and asked if I was happy with the placement. I was. He unwrapped a brand new, sterile needle and placed it in the gun. He opened up a fresh little pot of jet-black ink. Before he started he looked at me and asked, “Why did you choose one of the most painful spot on your body for your first tattoo?” I answered, “Because either way it’s going to hurt. How do I know if this hurts more or less than any other spot?” His face softened and he smiled and said, “Good point, I’ll have to remember that.” He sat down next to me and got to work. I didn't so much as flinch. After all that I have been through, the pain of a tattoo was nothing. I think I surprised him. As I sat there, the drone of the tattoo gun became almost soothing. There was a rhythm to it and when it was done, I felt empowered. I had my ink, a story to tell, and an addiction. I knew five minutes after getting the tattoo that there would be more.
In May of 2012, to commemorate my fifth cancerversary, I walked back into the tattoo parlor to get wings put on my right wrist, my 'wings of freedom' from cancer. A virgin no more, Tom remembered me and greeted me with a smile. And just six months after those life-affirming wings went on my wrist, I heard the words that no survivor wants to hear.
“Jennifer, I’m sorry but you have cancer, again.” My doctor said, solemnly after reviewing the results of my most recent biopsy. A routine MRI found an abnormality in my right breast...the same one that had cancer five and a half years prior. I'd had multiple false alarms since my initial diagnosis, usually they were followed up with a reassurance of 'it's probably nothing but we have to make sure.' This was a punch to the gut. All the air left my lungs. I began to shake.
“Are you fucking kidding me?” I gasped into my phone from a dark corner of a shoe sample closet. Yes, I just cursed out the doctor. Yes, I took the call at work. Yes, I was sitting on the floor surrounded by hundreds of pairs of shoes. Yes, in the mind of a fashionista, you can't get bad news in a shoe closet, so that's where I opted to take my call.
I was stunned, I was shocked, and more than anything, I was I really pissed off. I mean come on, I did everything right. Everything 'they' tell you to do, every item on every checklist in every cancer magazine I hit them all, damn it! I exercised, I ate right. I took supplements. I lowered my stress. I had the genetic testing done (all negative by the way) and yet here I was, on my way home from work to tell my boys, now in high school, that yes, in fact, I had breast cancer again. This time would be different though. I'd learned a lot in the five years since my first diagnosis, maybe too much, but this time I was more knowledgeable. I had a better understanding of drug therapies, surgical options, and coping mechanisms. I knew my body well and I knew what it was capable of. Once I'd reviewed my pathology reports with my doctor and found out that I'd been signed up for another tour of duty in Chemoland, I booked a haircut and a double mastectomy without even batting an eye. I planned out a yearlong treatment schedule with both my manager and my oncologist. I met with my human resources representative to figure out my medical leave time. I remained in control. I knew what to expect, and that was both a blessing and a curse.
I recovered from a bilateral mastectomy and immediate DIEP flap reconstruction. I barreled through treatment. I lost hair. I gained weight. I blogged. I signed books. I worked. I was interviewed on a local radio show, and yes, once again after every hair everywhere had left my body, I still adorned my one remaining eyelash with mascara. I never left the house without a hat...or lip-gloss. And I boldly accessorized.
I continued my mission to make my mark and live out loud, just with a little less hair. And this time I not only had the unwavering support of my husband and family but I now had a network of survivor sisters that fully understood what I was going through. I wrote the book that brought these amazing women into my life, and in return, when I needed it the most, they rallied around me, they supported me, and they never let me forget how strong I was when I needed to be. 'Yeah, I got this', I would think each time I crossed the threshold into the chemo room, or the operating room, or the blood lab. It became my mantra. It buoyed my strength.
So as I stayed on course, indelibly marking my journey, I realized my book was just the catalyst. I now volunteer as a support survivor with several online breast cancer communites. Why? Because six years ago, just the word mastectomy was incomprehensible to me. I did not have any understanding of my reconstructive options, the likelihood of false alarms and the multiple biopsies that would follow, nor did I understand that while chemo was tough, I was tougher.
I had to decipher, on my own, the mixed messages that were being given to me regarding treatment and surgery. My breast surgeon stated that, because of the early stage of the diagnosis and the fact that no lymph nodes were involved I would be a candidate for non-aggressive surgery. However, upon meeting with my oncologist, I was told that because of my young age and the grade of my tumor I would need very aggressive treatment. For as far as the pink patrol has come in raising money for breast cancer research, early detection, and awareness there is one area that has been ignored. The doctor, patient, and survivor communication. Making sure the newly diagnosed patient fully understand the diagnosis, the options, the side effects, and the roller coaster of emotions they will experience throughout is imperative to the next step, survivorship. The correlation between aggressive/non-aggressive surgery and aggressive/non-aggressive treatment is inconsistent...and deeply personal. One size does not fit all, but you should be at least aware of the size range offered. Yes, there is a big push from surgeons for breast conserving surgery but does that line up with the aggressive treatment that oncologists prefer? There were many late nights I stayed up warring with myself over the choices I had made. At the time, they were the right choices for me, because I could only see a portion of the picture, the part where I was a patient. It was the other part of the picture that I had yet to see, being a survivor. The emotional anguish of constantly waiting for the other shoe to drop was, at times, overwhelming. I regretted not being more aggressive in my surgery, I left tissue behind that allowed a new cancer to grow. I felt like I had locked the door but left the keys on the porch. I continually tell women, talk to your doctors AND talk to survivors. They're the ones that have been in the trenches, they will be your best guide in your battle as you fight to win the war.
On the one-year anniversary of my bilateral mastectomy, into the tattoo parlor I walked once again. My friend Tom was waiting for me. This time I went big. In a large scripted font, on my upper right shoulder I quoted The Beatles, "There will be an answer, Let it be." Because I've finally realized that six years after this journey began, I need to step back and stop asking questions for which there are no answers. Why me? Why breast cancer? Why wasn't once enough? I'll never know. But what I do know is that in my journey I've made the ride a little smoother for other women like me. I've given them a sounding board. I've listened. I've opined. I made my mark. I am indelible.