The most humbling—and fortunate—experience I’ve had since I was diagnosed with osteosarcoma 13 years ago at the age of 43 was being treated in the pediatric wing of a major cancer center in New York City. It is pretty difficult to feel sorry for yourself when you are sitting next to a 14-year-old adolescent undergoing chemotherapy who is putting on a brave face to shield her parents from the suffering she is going through.
The beauty and the beast of cancer is that it brings out the best in patients, especially children and young adults. It brings out our humanity and exposes us for who we really are. My experience with cancer would have been totally different if I had been treated in the adult osteosarcoma wing of the hospital. But that’s not to say being diagnosed with cancer and undergoing life-altering treatment wasn’t devastating.
During the winter of 2010, I was preparing for a marathon later that summer and began having pain in the proximal tibia of my left knee. I saw a sports medicine physician who initially dismissed the pain as a consequence of aging. Later, I would learn that an x-ray of my leg did pick up a mass, but it was missed by my physician, who said that I had a stress fracture and to ease up on any activity, especially running, until the fracture could heal. Although I obeyed her orders, as time went on, the pain became increasingly intense, and I would wake up at night, screaming in agony.
I finally insisted on having a magnetic resonance imaging (MRI) scan and even offered to pay for it myself after my physician said the test was unnecessary and that she did not think my health insurance would approve it. The results from the MRI clearly showed a suspicious mass, most likely osteosarcoma, said the physician, which sent me reeling. A cancer more commonly diagnosed in children, the excruciating pain caused by osteosarcoma is often dismissed in adults, as it was in my case, as due to a sports injury. It is also frequently misdiagnosed in children as a sports injury or growing pains.
Putting on a Brave Face
I was fortunate to meet with a surgical oncologist who clearly and calmly told me what to expect next, although what he described was terrifying. First, he said, he was going to admit me to the hospital and surgically extract tissue from the tumor for a pathologic examination. If the results are positive for cancer, he said, he would end the surgery and prescribe 3 months of neoadjuvant combination chemotherapy to reduce the size of the tumor and then proceed with limb salvage surgery. However, if the cancer continued to progress during treatment, he warned me, my leg might have to be amputated. In any case, I would then need 6 months of adjuvant chemotherapy to try to get to a cure.
Although my oncologist explained the side effects I could expect from the combination chemotherapy regimen, which included doxorubicin, cisplatin, and ifosfamide, I was still surprised when they set in, including early-onset menopause and long-lasting damage to my eyes, heart, and most visibly, my hair. Most heartbreaking for me was that I could see the suffering I was going through reflected in my husband’s eyes. And just like the children I sat next to in the chemotherapy chairs who put on a brave face for their parents, I put on a brave face for my husband. But I didn’t feel brave at all.
Despite the grueling treatment, cancer cells could still be detected in my leg, and I was prescribed high-dose methotrexate to eradicate those remaining cells, which likely saved my leg from amputation. My oncologist crafted together a new tibia for me that consists of 85% titanium and the rest, cadaver bone and tendon. Although I can no longer run and my reconstructed leg does not operate like a normal leg, I’m grateful that it’s attached to my body and that I don’t have to use a prosthesis to get around.
I’m also grateful that I remain cancer-free.
Making Life Better for Children and Young Adults With Osteosarcoma
During my treatment, specifically when it wasn’t going well and my bone tumor necrosis rate was high, I made a silent prayer to God to use me to make life better for the nearly 500 children and teens diagnosed each year with osteosarcoma. And I’m making good on my promise, but there is still so much to do. Inspired by the bravery of a young patient, Alyssa Divers, 11, who I met while undergoing treatment in 2011, I launched MIB (Make It Better) Agents (mibagents.org). The goal of MIB Agents is threefold: to support physicians, researchers, and the medical community to expedite new treatments for osteosarcoma; to support patients and families through our educational programs and resources; and to find kinder treatments and a cure for osteosarcoma.
Unfortunately, Alyssa died from the cancer just days before her 12th birthday, but her grace, perseverance, and spirit remain the inspiration to carry on our work.
Having a Life Purpose
When I was first diagnosed with osteosarcoma, I didn’t think I would live beyond age 44. At the time, I had three daughters, aged 19, 14, and 9. I was certain I wouldn’t live long enough to see my oldest daughter graduate college, get married, and have children. But I’ve been privileged to witness all three daughters grow into fine young adults. I now even have a granddaughter who has brought so much joy to our family—and another grandchild on the way. It is these milestone life events that give our lives purpose.
There is no question that when you have a life-threatening cancer, you are acutely aware that you may have a limited time on this earth, and your perspective changes. Having osteosarcoma has given me the gift of appreciating each day and living in the present. A gift I would not return.
Ms. Graham lives in Barnard, Vermont. She is the Founder and Executive Director of MIB Agents (mibagents.org), a nonprofit organization dedicated to making life better for children and young adults with osteosarcoma and supporting the entire osteosarcoma community of patients, physicians, and researchers.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.