I recently spoke at a National Cancer Survivors Day event held inside a badly lighted mall on a gorgeous California afternoon. When it was time for survivor testimonies, the organizers had me go first, but as it turned out, I wasn’t the ideal opening act.
As a 28-year survivor of osteosarcoma of the right distal femur (bone cancer just above the right knee), I live a happy, productive life, but I also live with serious late effects of cancer treatment. I don’t do the cheerful, grateful, now-I-know-what’s-truly-important-in-life cancer speech. There’s nothing wrong with such speeches when they are sincere, but I can’t honestly give one.
The other two speakers graciously and powerfully conformed to the archetype of cancer stories; they detailed their process of diagnosis and treatment, how scary it was and how much they appreciated their friends and family’s support, and then explained how grateful they were to survive and their desire to give back, to help others in the fight against cancer. They were great.
I cannot tell an honest story that way, so instead, I offered this mantra: It’s complicated.
Yes, I am proud and grateful to be a 28-year survivor of cancer. I feel happiness, contentment, excitement, and a desire to give back to the world. But I also feel sad and angry and scared and incredibly frustrated. Survivorship is quite complicated for me. I lead a meaningful but difficult life.
My cancer treatment, from 1989-1990, included in-patient chemotherapy and several surgeries. Unfortunately, an infection took hold following one of the “limb salvaging” surgeries that rebuilt my right leg with bone, muscle, and skin grafts after removing the tumor. The infection led to septicemia and more surgeries. Over the next 19 years, my knee deteriorated rapidly, become painful, arthritic, and unstable. I had more reconstructive surgeries, and another infection. In 2008, yet another infection led to emergency surgery and the decision to amputate my leg rather than risk further life-threatening infections and an increasingly unworkable leg. The above knee amputation (my 17th surgery) complicated my life by adding dozens of prosthetic appointments, learning how to walk on a prosthesis, the daily complication of trying to avoid acquiring sores on my skin (where it rubs against my prosthesis), and coping with both significant phantom limb pain and side effects of pain medications.
My post-cancer life has been anything but simple. On the other hand, some very good complications have also come out of surviving cancer.
The first good complication that coincided with the end of my cancer treatment and the beginning of my late effects journey was meeting Glenn, who has been my husband for over 24 years. When we met—the summer before our senior year at University of Vermont—I had less than an inch of hair on my head, no eyelashes or eyebrows, tubes implanted in my chest, a leg brace that went from my hip to my ankle, and crutches. Instead of being put off by my obvious physical complications, Glenn was intrigued. My cancer experiences made me even more remarkable and appealing to him, and Glenn has been with me every step of the way as I cope with the continued complications of late effects.
The second positive complication that relates to cancer and late effects is my career change. I became a professor, and I research communication in health care delivery, with a focus on cancer and dialysis. I used my curiosity about my own cancer treatment experiences to ask questions about patient satisfaction with patient-physician communication, interdisciplinary team communication in cancer care, and communication in the daily lives of long-term cancer survivors. My complicated body and life became an impetus to learn more and improve the communication among patients, their loved ones, and their health care providers. Through my research, I have met many incredible people, and my life is richer because of them and their complicated stories.
American writer Ralph Marston suggested that we “[w]elcome those big, sticky, complicated problems. In them are your most powerful opportunities.” Long-term survivorship has indeed been a big, sticky, complicated problem for me, and the most powerful of opportunities to make choices about who I want to be, what I want to do each day, and with whom. I’m grateful to continue my complicated life as part of a community of 14 million cancer survivors.
I don’t have a happily ever after ending to my cancer story, but I do have a good, strong, complicated story to share.
About the author:
I’m a long-term survivor of osteosarcoma (bone cancer) in my right leg, and I live with late effects, or illnesses and conditions caused by the surgery, chemotherapy, and other treatments used to stop the cancer. Although I am deeply grateful to have survived without a recurrence, my cancer story didn’t have a “happily ever after” ending where I returned to normal after concluding treatment. I think of my daily life more as a “realistically ever after” opportunity to continue to write the chapters of my life, which include the good, the bad, and the ugly, along with the hilarious, the awesome, the terrible, and the still-in-progress.
Laura’s blog, Realistically Ever After offers stories and irreverent commentary from a long-term survivor of bone cancer about her daily life as a survivor, along with discussions of current research on cancer survivorship and related topics.