We all know it is a gift to enjoy good health and pray that we never have to experience life without it. Unfortunately, in the last ten years of my life, I have not been so blessed. I have had seven surgeries to treat two cancers and an appendicitis. That is seven times more surgery than I had in the first four decades of my life. Thankfully, (as far as I know), I am cured of cancer now but I admit that I am still struggling to reclaim my healthy outlook during the cancer recovery process. Eight years after I completed extensive treatment for breast cancer (chemotherapy, radiation therapy and mastectomy), I noticed a white patch on my tongue that wouldn’t go away. I soon learned it was a precancerous condition called leukoplakia. While I was monitored very carefully for a year for progression to cancer, I recently insisted my doctor take a closer look. It was cancer. I underwent surgery in January of 2016. Losing part of my tongue to be cured of my second cancer has been tougher than I thought. Although I want to pretend that everything is normal, there are moments that I feel branded as a “sick person.” It feels surreal because in my mind, I am an oncology nurse not an oncology patient! How did that table get turned?
Cancer Nurse, Cancer Patient, Cancer Advocate
The truth is, my experience encompasses all sides of cancer; as a cancer nurse, a friend to cancer patients, a professional advocate for cancer patients and as a patient myself. I’ll admit that my toughest duty was as a friend; two of my closest friends died of cancer, one in their twenties and the other in their forties. The reality is that the cancer experience has become a part of who I am. Nevertheless, while I was supposed to feel grateful that my most recent cancer was superficial, had not spread to my lymph nodes and wouldn’t likely require more treatment, I confess I have felt more than a tinge of anger during recovery. I am angry that I am self-conscious about my speech, that I have a six inch scar on my neck, and that I have to worry again about the cancer coming back, (as I have about my breast cancer for the past ten years). What was hardest about my last surgery, a partial glossectomy (removing part of the tongue) and a lymph node removal from the neck, is that there is no hiding it. While I could move on from losing my breasts (thanks to great reconstructive surgery), and I no longer need my ovaries, this latest surgery has left more than my tongue scarred. I am honored that acquaintances, friends and clients will continue to consult with me when they get a diagnosis of cancer. I am seen as a resource and a great example to others. But what few people realize is that my contribution is as much about understanding the scars that the disease can leave as it is about waging “the battle.” When I talk to people who are struggling with cancer, they sense my realism and empathy; there is little sugar-coating, but a lot of love and real understanding. Many well-wishers have told me that I “dodged a bullet again” and encourage me with positive comments about my outward appearance. As many cancer survivors know, outward appearance can belie the dark emotions that lurk deep. I wish looking good and feeling good were always aligned.
Grief over what was, and what could have been lost forever is too close under the surface for any of us who have ever taken that dreaded call from a physician that starts with “I have bad news.”
While I hope that I have seen the end of cancer in my own body, I will never rest assured that I have. I am grateful for every day of life that modern medicine has afforded me in the face of serious cancers. Finding meaning in the additional time I have been given has meant seeing C2it to fruition so we can help even more people and their loved ones through serious illness and caregiving. I have been riding a pendulum to the dark side of illness and recovery, and while I know it will never swing all the way back to my former self, I also know the trick is to keep it moving in the right direction.
Kim Garlinghouse-Jones RN, MPH
Co- Founder, C2it Health April, 2016