“My Voice” by Jillian

Jillian - 'Survivor'

My experiences with the most profane word in the English language, “Cancer” has given me a life that I truly appreciate and it is because of  that ”C” word, that I now live each day with special meaning and purpose. There are experiences in life that test the very fiber of your being, for me that experience is cancer survivorship. Each day in remission is a good day, and today symbolizes day 365- one year!

Included with one of my many bills from Sloan Kettering was the quote, “Of all the forces that make for a better world, none is as powerful as hope. With hope, one can think, one can work, one can dream. If you have hope, you have everything.” It has since become my mantra. The irony is that I received it in a bill.

I actively fought cancer for three years and through two distinct primaries, Uterine and then Ovarian. I endured hormonal treatments, retched weight gain and numerous surgeries. I commuted to Sloan Kettering in NYC far from my home. I survived chemotherapy equipped with Taxol (ugh) and of course the most recognizable cancer side effect alopecia (I went bald). No easy feat for anyone, yet alone a 20 something from West Palm Beach, where a beach body and sun tan, can take you far.

My journey has properly taught me more than I ever wanted to know about; people, pathology and patience, cancer is not a gift but the lessons that I have learned as a byproduct of having cancer are among my most valuable to date. It is because of cancer that I now work for a Jewish Women’s Foundation where quite a bit of my work necessitates around outreach, advocacy and fundraising to raise awareness and assist to empower others. I am an advocate for knowing your own body and listening to how you feel. I want people to know that you cannot just survive cancer, but you can thrive during and after a battle with cancer. You never know when your world will change, a cancer diagnoses is not the end, but for many it may indeed it is the beginning.

The first time I was diagnosed, I was 23 and had graduated collage four weeks prior. I landed an amazing job all the elements in my young life had started to come together. My life changed on July 13, 2006 with three small unexpected words after a D and C, for prolonged and heavy bleeding prior and during my period. “You have cancer”, the Dr. said. As a child, my best friend Courtney was diagnosed with leukemia at the age of nine, and I knew all too well about the cancer protocol. I knew intimately the face of a young cancer survivor, and I knew there was hope.  I was calm as he uttered the words but – I burst into tears as he uttered the next phrase,  “and part of the treatment will be a hysterectomy”, that was not something I was prepared for. I felt my body begin to fill with unrecognizable pain and distraught emotions and I began to openly sob. This isn’t the way my life was supposed to go! Cancer at 23, and infertility? Now, you don’t know me so let me share that bursting into tears is, and was not a commonality in my young life- I’m not and was not a serial crier or gushy female. I prefer to think of myself as a strong woman, in control of her emotions, was I ever wrong.

The second time I was diagnosed, I knew I was sick. I was 25 and it had not yet been in remission from the uterine cancer assault on my body for a full six months. I had moved on with my life since that first diagnosis.  I changed jobs to something I really loved in the nonprofit world working to help others, I made much less dollars, but felt really good about the work I was doing. I moved in to a beautiful home with the man that I loved, my longtime boyfriend and we created embryos to one day have our own biological family. I expected to live for all intensive purposes “happily ever after”. But- I felt my body start to change over two months, that change was cancer’s resurgence. This time it was gravely more serious than the last. I had the doctors run tests; everyone said I couldn’t be sick. My doctor and I had chosen to leave my ovaries intact to avoid other complications (surgical menopause), in spite of separate surgeries for lymph node dissections and wall invasion during my pervious battle. I asked by name for a CA-125 even though I knew about the false positives the test could generate. I had done my research and I was feeling all the documented signs of ovarian cancer.

On March 12, 2008, I received the call while I was at work on my way to a charity event that was a yearlong culmination of my professional efforts in my role within the Women’s Foundation. And of all guest speakers that evening we were hosting Eve Ensler- of the infamous “Vagina Monologues”. So there I am in a room with a woman speaking about her own “Vagina Monologue”, and I am beginning to live the sequel to mine, with cancer in the role of supporting cast member.

The recurring theme throughout the evening was ‘vagina’, as a tool of female empowerment, and the ultimate embodiment of individuality. It was all bordering on too much for me, but somehow I held it together. As I sat in this room with the knowledge that my female organs, were the home of renegade cells that are rebelling against my body and multiplying at an alarming rate. Deferring from status quo, causing me to once again become ill with the “C-word”. Talk about irony. I flew to Sloan Kettering within the week had emergency surgery, to remove three large tumors, two the size navel oranges and one size of a large grapefruit.

The news after the surgery wasn’t good, Ovarian Cancer doesn’t have stellar survival statistics and at first glance wow! – Even my beloved Dr. B was in tears post surgery, he prepared my family for the worst. – So let me just say that at times it is an uphill battle, but it can be done. I never had a doubt that I would not just survive, but thrive. I have always maintained a positive attitude to not just live through bouts with cancer, but to love my life as it is today, post-cancer, even with some complications and side effects of having cancer. Like chemo-brain, What was I saying? Just because you have cancer doesn’t mean you are “broken” or defective, just that you may need a little extra TLC and you may need to do things differently.

Upon finishing chemo, my long time almost perfect “Mr. X”, (to protect the guilty) told me he fell out of love with me during my cancer crusade (not something I was banking on as I had gotten through cancer with the belief of how wonderful my life would be, if I just came through this experience). He asked me to leave the home we shared in a rather direct assault. (In an awkward dinner scene in a posh restaurant. It was surreal, something right out of a bad sitcom, the kind of situation where you pray for the Earth to open into a sink-hole, I was bald and blind-sided, but I survived).

So bald, weak and in a very strange place personally, I returned to my parents home, homeless, dumped, my life in utter disarray. But I made the choice to jump right back into my life; I knew that my time is way too important to waste and that I had to hit the ground running. I didn’t want special treatment or sympathy. I was determined to reclaim my life and reinvent myself. It was hard work.

Some of my experiences during my cancer ordeals were very scary and genuinely sobering, going into many surgeries with too many uncertain factors. I had questions about what my anatomy would be like, or my sex life? The rounds of chemotherapy were painful; many times it caused pain in each and every bone in order to generate white blood cells (a necessary evil) to prevent infection.

And some of my experiences that were funny:

Coming to work bald and witnessing the physical reaction to the visual transformation from label whore/beauty queen prospect (I have a really healthy sense of self esteem) to well, I’m not sure what, me sans hair. Though openly everyone was very supportive. I have amazing friends and family.

Or when I was lying on the table in the surgical suite at Sloan Kettering and lecturing the surgical team, that as they removed these massive abdominal tumors they were to be careful when they sewed me up, because I needed to look respectable walking around the yacht club. I wanted a good looking scar, something that would look good in bikini. (I am from South Florida and we spend a lot of time scantily clad in the sun.) I knew no matter what they found, I was going to be alright!

And some experiences were disheartening:

Like when I came home after being in the hospital for two weeks, cut open like a high school science dissection project and Mr. X  told me he, “wasn’t attracted to me anymore” as I stood in the shower. And why, because I now had a new 6 inch vertical abdominal incision that he deemed, no longer acceptable, no longer desirable. I stood in the shower and quietly cried that statement hurt more than my incision or any of my previous surgeries. Love isn’t ever supposed to hurt but sometimes when we are sick we make excuses and exceptions for people and their actions. I learned that being sick and having cancer doesn’t ever give anyone the green light, the immunity to hurt you, just because.

As a survivor over the last year I have been recovering from chemo, no easy task, I left my turbulent and emergently hurtful relationship with Mr. X (the father of my unborn embryos that’s a story in and of itself), started dating bald, (yes you read that right bald, and there’s no book on doing that- dating as a hot bald chick). I have been on a journey of absolute discovery about myself and what I want in my life. Being a cancer survivor has opened my world to better choices for the person that I am today, and I really like the person that I am becoming.

My experience with the “C Word” and survivorship illustrates how we can harvest our inner strength, and look toward the positive, even when things just don’t seem like they will work out. G-d has a master plan. I want people to know that you cannot just survive cancer but you can flourish as a cancer survivor. The best assault you can give cancer, is a positive attitude and never forget the power of hope. A cancer diagnosis doesn’t mean your life is over, it just means your world will change, and it may be for the best, in ways you could have never imagined. I am very blessed to be a survivor. In the Jewish faith we have a saying and it think it’s very fitting for me today on day 365 of my ovarian cancer survivorship- the anniversary of my last chemo infusion, L’Chaim, to life.

This entry was posted on Friday, August 21st, 2009 at 8:12 pm and is filed under written word and tagged with , , .