A few weeks ago I drove myself to Dana-Farber (which is a fairly horrifying drive if you’re not used to driving in the heart of Boston) to meet with Dr. Arnie Freedman, the head of the lymphoma department and also a fellow alumnus of my alma mater. After a fairly harrowing trip into the worst parking garage I have ever encountered, I emerged on the Carl and Ruth Shapiro floor (if you know me well, you know why this is pretty hilarious) and waited. Well, first I got weighted, which was horrifying, and then went back to waiting.
First of all – if you are reading this and considering going to Dana-Farber for treatment, I strongly encourage it. I had very good reasons for going to Newton-Wellesley but if I was to do it again, I would brave the drive into Dana-Farber. The facilities are gorgeous and the doctors are hands down some of the best in the world.
Back to the story. I met Dr. Freedman who spent the full hour talking to me. He took a full history, looked over my charts, and then went back to consult with the other Hodgkin’s specialists on the floor. None were concerned about my scan. Even though I had advanced stage lymphoma, my risk factors are minimal for disease progression. In fact, my only real risk factor is the stage IV. We all know that statistics mean nothing with cancer, for good or bad, but he was quite reassuring.
He explained that after treatment for Hodgkin’s, there is still quite a bit of scar tissue which is why we can still feel the node in my armpit (which is quite small) and also why it is still glowing on the PET scan. In short, he told me what I already knew. I just needed another oncologist to say it so I didn’t seem like I was ninja’ing my current oncologist. Dr. Freedman also complemented my knowledge of my disease (uh, thanks? Aren’t most patients engaged with their disease? Apparently not..).
My appointments have certainly scaled down, but I still need to go in for yearly exams with my PCP (as well as a cancer follow-up on Monday) and go get my port flushed and some bloodwork done at my cancer center.
Life has been pretty hectic since getting the all-clear. Someone very important in my life was diagnosed with a debilitating, incurable illness and I have been spending a significant amount of time learning everything I can about advanced glaucoma and researching options for funding his necessary surgery. Unfortunately, it seems that the government would be happy to allow him to go blind and pay for disability for the rest of his very long life (he’s in his late 20s) versus paying for a surgery that would save his sight for the foreseeable future. Also unfortunately, the government has not met me yet and I am ready to raise holy hell if need be.
This also has given me focus again on the nonprofit I hope to start. As difficult as it can be to find resources as a young adult with cancer, it’s much more difficult to find resources for a young adult with other disabling or life threatening illnesses. This man received a diagnosis typically reserved for people in their 80s – he needs just as much support, emotionally and financially, as I did when I was first diagnosed and yet there are much fewer options for him. It’s absolutely infuriating.
It will take a few years to get off the ground, but I will be starting a nonprofit focused on helping sick and surviving young adults with an array of diagnoses. This is a veritable black hole in the nonprofit world with few exceptions (like Next Step, which is small and only focuses on a handful of illnesses including cancer and HIV). Who is going to fill that hole if not me?