- Posted January 22, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Grown Up in Pediatric Cancer Center
Graham finished treatment in 2011 and is now cancer free. She is currently working on a movie about Canadian athlete Terry Fox, who died of the same cancer in 1981 and was also an older patient in the pediatric ward. Profits from the film will go to support cancer research.
- dsashin, CNN iReport producer
Adult in the Pediatric Cancer Center
Osteosarcoma is a rare, primary bone cancer that occurs in the long bones (arms/legs) of growing children. I was training for a half marathon in 2010 when persistent “knee” pain took me to the doctor. After nine months of misdiagnoses, I was finally given an MRI, where a large tumor was detected at the top of my tibia (calf bone). The radiologist was puzzled, given my age of 42. I was referred immediately to an orthopedic oncologist. After a bone biopsy done under general anesthetic, I woke up in the recovery room to my husband and surgeon delivering the news that I had osteosarcoma.
My husband (a marathoner himself) had finished chemo in 2008 for a rare head and neck cancer. He worked through chemo and radiation, with pain and difficulty, but we got through it. When we met with my Pediatric Oncologist, I assured him that I loved my job and my life and would take it all in stride. He assured me that I would not. This cancer is aggressive – the treatment so grueling that we will need to be prepared at some point to weigh the benefit of continuing treatment or dying because of the treatment. IF I survived, bladder, heart, hearing and walking would all be enduring health problems, due to the massive doses of chemo and painful surgeries.
In addition to treatment, four chemotherapies running directly into my jugular and aorta, two weeks of every month, the decision had to be made about my leg. The choice – limb salvage surgery, where the bones in my leg are replaced with titanium, or amputation. Since you can do limb-salvage then amputation if things don’t work out, and not the other way around, we chose limb-salvage. Twelve and a half hours of surgery later (plus two subsequent leg surgeries incl. 12/12/13), I am bionic.
Knocking on wood in prayer, I am cancer free since July 2011. I am reluctant to publicly tell my story, but feel compelled – even a sense of purpose, to tell this story that many of my little co-patients do not get to tell. Because I live.
For the last half of my treatment, I was part-time in an adult chemo center. Want to know what adult cancer patients talk about? Cancer. Want to know what pediatric patients talk about? Life. Normal. Music. Friends. Sports. Want to know what surviving pediatric patients think and talk about after treatment, assuming they live (and MANY don’t)? Finding a cure. Cancer is more than breasts and prostates, children are dying – and ALL pediatric cancers receive less than 4% of the entire NIH budget for Pediatric Cancers. No new drugs in 20 years for pediatric cancers. Seriously.
As one of the few adults who have survived this disease, I am forever grateful for my life in the Pediatric Cancer Center. I am more grateful for normal, for everything. I grew up, as a grown up, in the pediatric cancer center.
I blogged throughout my osteo journey - www.cancerviver.blogspot.com