August 16, 2013 — Even if you achieve remission from cancer, the worry often lingers. In two months, I will celebrate five years since my stem cell transplant, five years leukemia-free. Five years is a major milestone in cancer terms; some even consider it to signify that you are cured. I will celebrate October 7th as I always have the past 5 years, as a second birthday. I like to call it my rebirthday. I will celebrate life and its greatest joys, and I will dream of the many birthdays and rebirthdays that hopefully await.
But I don’t think I will ever be able to say I never worry about cancer. In 2012, I learned I had melanoma in situ (Stage 0) in between two toes. I’m the girl who wears sunscreen every day. I even put it on my feet when they are exposed. I knew though that the treatment I had for my leukemia is a risk factor for skin cancer (among other cancers).
Two months later, I broke my arm and had to have 2 plates and 12 screws implanted. Nine months after that, I broke my toe. Part of me wanted to throw my arms up and say “Really?! Is this really happening again?!”, and then I remembered it is not what has happened to me that truly matters, but how I deal with it. To avert the fear, I asked myself what I could do to understand my ailments. My first thought given the broken bones was a bone density scan. The results looked good!
When I developed a strange skin rash, I made an appointment with my dermatologist. She mentioned over the phone that the lab’s analysis included a possible skin disorder that may be connected with recurrent leukemia. I e-mailed my oncologist and scheduled a bone marrow biopsy, my 24th since the first diagnosis in 2005. It was clear.
At a routine optometrist appointment, my doctor noticed a mole in my eye which is sometimes linked to ocular melanoma. Although she wasn’t concerned because its appearance was benign, she referred me to an ocular oncologist. Then in June, following a particularly debilitating virus, I noticed a lump that formed fairly rapidly on the ribs in my chest. I’ve had two ultrasounds and an MRI to try and figure out what it is. As I lay in the MRI machine this week trying to distract myself from the tight space and the construction-like bangs and beeps, I thought about my life as a 35-year old expert patient. Sometimes I have more in common with the elderly than I do with those my own age. I have doctor appointments every month, typically multiple doctors. I sit in waiting rooms writing checks for my medical bills. I will never be someone who gets a health check once a year and continues with life.
I know my story is extreme but my point is, as a cancer patient, you never forget the disease. Whether it’s worrying about relapse, dealing with the effects of treatment (which may include infertility, permanent physical changes, bone loss and secondary cancers, among many other things), or struggling to adjust to life without the constant vigilance of doctors and nurses, cancer becomes a part of your life.
What I find most helpful is developing a plan. Sometimes even just the act of writing down a worry can bring some peace. The most comforting resource for me is a group of knowledgeable, caring doctors. Last year I attended a young adult survivorship conference, and one of the speakers focused on the importance of developing a survivorship care plan. A survivorship care plan is a relatively new concept, developed in the last decade to serve the growing population of cancer survivors. The goal of such a plan is to inform the patient and his/her caretakers of possible health changes due to cancer treatment, to develop guidelines for follow-up treatment and a healthy lifestyle and to provide support for making the segway from cancer patient to cancer survivor.
I guess everyone would love to be guaranteed a long, healthy life punctuated by rewarding and happy occasions. No one wants to face crises that challenge the way they approach each day. Unfortunately, these challenges are an innate part of our lives and the way we handle them impacts not only ourselves, but also our loved ones. Sometimes I feel overwhelmed by worry, and I allow myself some moments of self-pity. Ultimately, the tears and the fear recharge me though, and I feel a sense of gratitude for the perspective that my experience has given me. On October 7th, I will raise a glass of red wine (I like to think it’s good for my blood cells 🙂 ), I will create beautiful chalk drawings on the driveway with my niece, I will thank my parents, family and friends, and I will cuddle my pups. And I will always remember, “The more you praise and celebrate your life, the more there is in life to celebrate” (Oprah Winfrey).