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.
In February 1989, during my sophomore year of college, the knee pain I had been experiencing for months was diagnosed via a surgical biopsy as osteosarcoma of the right distal femur, or bone cancer just above my right knee. After six chemo treatments, I underwent a “limb salvaging” surgery during which my surgeon removed the portion of my bone in which the tumor grew and replaced it with a bone graft (called an allograft), metal plates, and screws. I then resumed chemotherapy, which was administered on a brutal in-patient treatment schedule of Monday-Wednesday for three weeks in a row, followed by two weeks rest before resuming. The treatment was supposed to take nine months, but low blood counts, infections, septicemia, and other complications led it to taking over a year. A serious staph infection in November 1989 necessitated two emergency surgeries to try to stop the progression of the infection; when those failed, the bone graft was removed and a plastic spacer inserted into my leg. I completed chemo in March 1990, and in May, surgeons inserted a new allograft along with muscle and skin grafts. In total, I spent two years, one month, three weeks, and four days continuously on crutches, and an additional 9 months with a leg brace.
Late Effects Story
A serious staph infection during my many months of chemotherapy started me on the road to a succession of reconstructive surgeries that went on for almost 20 years. All of the surgical complications, infections, endless rehabs, and other symptoms post-cancer are what the medical establishment calls “late effects” of the cancer treatment. In 2008 I suffered another sudden infection, and I determined, in collaboration with my surgeon and my husband, that an above-knee amputation of my leg was a better bet than recurrent staph infections and further surgeries on my painful and impaired leg. In total, I have had 17 surgeries and many further months using crutches.
Following the amputation, I was fitted with a C-leg prosthesis. I cope with serious skin irritation and needing my socket (the part that holds the prosthetic leg onto what’s left of my leg) adjusted over time, but the worst part is the chronic phantom limb pain, for which I take a number of medications.
The Rest of My Life
I did (in a roundabout manner) find a career through cancer. I was fascinated by the awful, wonderful, confusing, helpful, and just plain weird interactions I had with health care providers, and that fascination eventually led me to earn a PhD in Health Communication. I research and teach about interpersonal communication in health care settings and extended families (along with feminist methodology and gender studies) as a professor. You can learn more about my academic self at my SCU faculty page.
I’m a feminist, by which I mean that I support the political, social, and economic equality of all sexes and genders. I’m an intersectional feminist, which is a way of saying that I take seriously that disability, race, religion, sexuality, class, education, age, and a host of other factors intersect with sex and gender in forming our identities, socialization, oppressions, and privileges. I know that many potential readers will be put off by my labeling myself as feminist. So be it. Now more than ever, it is vital that I use my white, straight, cisgender, and educational privileges to speak out against discrimination and injustice at the intersections of (dis)ability, gender/sex, and (lack of) health insurance.
I’m married to my college sweetheart, whom I met in the amazing Lawrence Debate Union under the direction of the late, great Tuna Snider at the University of Vermont. We live in the San Francisco Bay area with our cats.