I also have some personal news to share. Unfortunately, it isn’t the happy kind.
About two months ago, I noticed my left leg was acting “weird”. It just felt different, had a few more stubbed toes than normal and felt kind of unsteady. I honestly thought I was going to be diagnosed with multiple sclerosis…given my family history of autoimmune diseases, this felt logical with my symptoms.
July 4th the symptoms became too obvious to write-off as side effects of exercise, heat or dehydration. I went to the emergency room and they found a 3cm brain mass.
Long story a little shorter, I went in for an awake craniotomy on July 12th to remove as much of the mass as they could. The day after surgery, we were told the mass is actually an aggressive brain cancer called Stage 4 Glioblastoma.
I’m currently undergoing radiation and chemotherapy to treat the tumor. But, as I’m sure most people do…you’ll probably google “glioblastoma prognosis” and see the same miserable gut-punch that I’m now living with. Median survival rate is around 12-16 months.
So, yeah…it’s the worst kind of news. I have a husband and two daughters (ages 17 and almost 19). I had a lot of great plans for my retirement…but since I’m currently 48 years old…that looks a little unlikely now that I’ll be able to live out those plans. Instead, I’m focused on making sure I enjoy my family for whatever remaining time that I’m given.
I’ve shaved my head, still have 6 months of chemo treatment ahead, and will also be wearing a ridiculous looking contraption soon called an Optune device. Basically, living 24-7 with an array of transducers covering my head and attached to a power supply in order to disrupt the mitosis phase of cancer cell reproduction. (Good thing I like science?)
Anyways, if you want to read more, I’ve left my facebook posts about this journey set to “public” audience so that everyone can read or send good thoughts and prayers. You can find me here or search for my name (and bald head profile picture) Katie Disimone.
There’s also a GoFundMe campaign setup by my dear friends to help me figure out how to meet the financial constraints of this diagnosis. I will likely need to medically retire soon, and I am the primary breadwinner for my family. We are working on figuring out how this all will work out…but there’s a lot of unknowns with how I’ll respond to treatments and how the tumor might recur even if initial treatment respond is good. Glioblastoma is a ^%@$ of a battle, and I intend to fight hard.