A few weeks ago I was asked to speak on a panel about survivorship, so I called on my friends Isabel, Carrie and Suzan to see if they could spend a little time telling some folks about what it’s like to do cancer.
The panel was for McKesson Specialty Health, the company that publishes CURE, which does a wonderful job educating its employees and even its customers about cancer.
The event is called Oncology University, and new employees and old timers are given the option to come and learn more about the disease that they spend their day addressing. These folks could be in any of a number of positions, most of which will never put them in contact with the people who ultimately benefit from their work day – cancer patients.
I felt that Suzan, Isabel and Carrie would offer a number of details that I couldn’t, so I invited them to join me. Isabel is a head and neck survivor whose salivary gland cancer was treated with surgery alone. Part of her story is living with chronic pain and the steps she has taken to get off opiates, which include acupuncture, exercise and living with pain above what many of us would tolerate.
Suzan and Carrie have similar stories, both are metastatic breast cancer patients and both have one child. Suzan has been living with metastatic disease for a few more years than Carrie, so she spent some time giving her advice on the side effects of the drug she had just started taking. Carrie wrote about dealing with the the side effects in her last blog for us, and I was glad that Suzan had told her to power through it because the drug is showing good efficacy in treating metastatic disease.
Carrie shared what it was like to have a 2-year-old, Henry, whom she and her husband adopted the same month she found out her cancer was back. She was diagnosed initially at 29.
The audience was great, listening and asking good questions. It was hard not to keep reminding myself that Carrie and Suzan had metastatic disease, something they reminded the audience of frequently. As Carrie said, “It’s important to remember we are LIVING with cancer. We look well to the average person, and to our friends, who were around when we were initially diagnosed and who now don’t know what to do with us.”
It’s a great idea to have the people in cancer listen to the people with cancer. Let us know if you want us to come to your place with our dog and pony show.
I had a chance to see Carrie again last weekend when she and her mom and Henry came by for a visit. On the day of the panel, I had overheard Suzan, whose daughter is now 11, and Carrie talk about their negotiations with the powers that be. Suzan said something about how many years she needed to see her daughter graduate high school. Carrie said, “I need 15 years.”
Henry is a beautiful little boy with a head of blonde hair. And I know it’s been said often that adopted children look like their parents, but Henry really does look like Carrie down to the dimples in their cheeks.
It makes me mad that what other parents take for granted my two friends have to look at as far from a done deal. They shouldn’t have to negotiate for the years they will have with their children. They should have more options.