These aren’t necessarily the first words you would picture a patient saying to their team of oncologists when they receive a cancer diagnosis. However, I believe they were pretty close to mine.
I was 33 years old and had just found out that I had a rare type of cancer and my odds of surviving were 50/50. I vowed that I would become my own best advocate. I would not only be a star patient but I would be a star at taking care of myself and my physical, nutritional and spiritual needs.
I was determined to take control of my treatment and set parameters and boundaries when it came to my disease. Just because I had “cancer” did not mean that I had to forgo things that appealed to me.
My doctor explained to me that the chemotherapy regimen he was about to put me on would, in fact, make me lose my hair. “OK, but if you make me bald, I don’t want to be fat too!” He immediately started laughing. I think he was so surprised by my reaction. I am pretty sure no other patient had been so bold (or so off their rocker).
I explained that obviously I want to do all I could to rid myself of the disease and that was clearly the #1 priority. HOWEVER, if it was at all possible to minimize the amount of steroids I would need to take, I would greatly appreciate it. I didn’t want to lose my hair AND gain 20 pounds if I could help it.
And then my doctor turned to me and said something very unexpected: “I wish more patients were as vain as you.” “What?” I said, “I must have heard wrong because the last thing I expected out of this selfish, egotistical conversation was a compliment. “Being vain is a GREAT thing,” my doctor shared. It shows that you have a true desire and willingness to live. To be honest Jen, I get worried about the patients who are not willing to set any parameters and no longer care about the quality of their life or their looks.”
I left that day feeling empowered and a bit lighter on my feet. If there was one thing you could say about me, I was vain! And the conversation that I had with my doctor made me realize that asking for what I needed was just as much a part of my treatment and recovery regimen as the chemotherapy.
Over the years I have asked for a lot of things that seem out of the ordinary. At first, it was hard for me to ask. I felt like I was being difficult or high-maintenance or unreasonable. But then I realized, “Hey this is my cancer journey and I want to do it in a way that works for me.” It was important for me to continue to stay in shape so when I found myself in the hospital for 3 days at a time for chemo treatments, I asked if they could bring a stationery bike into the room. I also find that practicing relaxing breathing techniques really helps me manage pain so if I need to be in the hospital, I ask for someone from the integrative medicine center to visit me in the hospital for a quick session.
My doctor and I joke around about my “special requests” from time to time but he always appreciates them. When I asked him recently if I could put self-tanner on my bald head so it wouldn’t look so different from my olive-toned face, I thought he might fall out of his chair.
But I never forget, I might have cancer but cancer doesn’t have me.