Cancer Story: Part Three
Amid these life questions, I found a part-time job at a Kate Spade store back in 2009, and remember almost passing out on my first shift because I was standing for four hours. Shifting back into a normal lifestyle, with energy you no longer have, is hard and requires slow, patient steps. I laugh now, thinking how far I have come with my physical body, my energy levels, and my mindset.
During these post-college years at my first job, my MRI picked up five more brain tumors in my ventricles. I finally learned how to research medical diagnoses, advocate for myself to both my parents and medical professionals, and learned how to say NO to anything I didn’t believe in fully. After some debate, we decided we were able to wait on these tumors since they have been so slow-growing.
I was able to stand on my own, (somewhat) confidently make my decisions, and finally went against the grain of what my parents and doctors agreed to be the best route. We waited and watched these tumors, and about four years later, they finally showed an increase in diameter. I started having headaches on the regular, and I knew it was time to move forward with a medical plan.
My doctors immediately recommended full-body radiation, as studies had shown that my type of tumor doesn’t respond to chemo-therapy as well as radiation. #Figures. I immediately recoiled, knowing the repercussions of full brain and spine radiation. My parents pushed for it, just wanting one big solution to a big problem, however, I knew that this route felt wrong. First of all, I wouldn’t be able to have the total radiation, as I had already radiated my lower lumbar spine years ago, and you can never re-radiate the same area. This means even if I radiated everywhere else, I could still have tumor cells in my lumbar spine and I would have done this for nothing. Secondly, my tumors were no bigger than 4mm each, and there had to be a less damaging way of killing them and keep the whole brain and upper spine healthy.
I said my first ‘no’ at 25, both to my parents and to my doctors and told them we needed a new plan. We started looking around, experimenting with the cyber knife, gamma knife, and the proton beam, and found the best route was the gamma knife offered by Siteman Center. It had millimeter precision, with little to no fallout, had far less of an impact on overall health, it wouldn’t max out my radiation capacity, and it had seen success with ependymomas. Most of all, it felt right to me.
We made the appointment, went into Siteman Center, mapped out each tumor individually, and screwed my head into a halo (literally). In order to execute millimeter precision, the halo had to be flush to the skull to ensure not even the smallest movement. I laid, with the entire weight of my head balanced on two screws, for four hours. I refused to even get up for the bathroom, because it hurt so bad to even move.
After that procedure, I have been NED (no evidence of disease) for 8 years and am actually trying to figure out the rest of my life. You know, because I have one! Medically, I am working with the late effects of all the surgeries and treatments, which include establishing new neural pathways from my brain to my feet, working on my balance that has been impacted by the resection in my cerebellum, and re-firing nerves and muscles that have long atrophied out. I want to be able to share this story so you can know the background of my disability, and see how far I have come and how I can do anything I want with innovation, creativity, patience, and being able to ask for help. The pictures to your right are the scans from my MRI this past January 2020. There is still no evidence of disease, but you can see in the black holes where my past resections were located!