The nice thing about being a 17-year cancer survivor is that my medical history no longer precedes me when I walk into a new room. While I am very upfront about my background if asked, “I had cancer” is also not part of my self-elevator speech anymore…unless I’m at a young adult cancer conference, of course!
However, the downside to being a 17-year cancer survivor is that cancer–and all of the chemicals and surgeries they used to treat it–is always present in some form or fashion. Lately, I’ve been hyper aware of the chemotherapy’s “hostess gifts”. I’ve been fortunate to have a body that has mostly allowed me to do everything I want to do, but here and there, I am starting to feel like I’m falling apart.
The other frustrating thing when you’re 17+ years out of chemotherapy is that the medical world largely considers you “cured”. Piecing together a trusted and coordinated medical team in Washington DC has been a real challenge for me. The key word there is coordinated. I have found a wonderful lady doc, a dentist, an endocrinologist, and a cardiologist through referrals, but without a lot of effort on my part, none of them communicate with each other. While I was on chemo, and in the years of follow-up after, my oncologist became my primary point of contact for all things medical, and through her, all of my other doctors were sharing and feeding each other information about my health needs, and each already knew (without my having to do much at all) what was going on with my health holistically and how they fit into the puzzle. Being part of such a coordinated care system made my experience as a patient that much better.
Enter the George Washington University Survivorship Clinic. I learned of their Thriving After Cancer program from my oncologist in NYC, and this week, I went for my first appointment. I was floored. They already had all of my medical records from my doctors (courtesy of the HIPPA release doc I signed). Through surveys sent out before the visit, they were already pretty knowledgeable about my current health status. Plus, they had they knew who I needed to see and which tests I needed to have done, and they coordinated the entire morning for me. I spent time with a nutritionist, a general internist, an oncology RN, and a care coordinator. Each spent a significant amount of time with me (probably more face-to-face time with each than with all of my doctors visits for the past year combined), came prepared with useful suggestions, and communicated clearly and effectively. I left with a handful of referrals for services I needed but wasn’t able to find on my own (e.g. a competent PCP and an orthopedist with experience with limb salvage), and loads of information about how to continue to care for myself. For the first time in a long time, I didn’t feel like I had to educate my doctors about my medical conditions; I felt like they were educating ME. And for all of these reasons, I left the clinic feeling empowered as a cancer survivor.
Ultimately, we cancer survivors need to be our own best advocates, but I cannot underscore enough the value of a coordinated medical home. Having a medical team that empowers me to make smart health decisions is such a gift. And with Thanksgiving just around the corner, it is a gift I am especially thankful for.