Bruce B. - diagnosed in 1995 with an Ependymoma
I'll keep this short, I promise !!!
In 1994, I was on active duty in the U.S. Air Force, when I noticed some unusual symptoms - numb fingers, vision problems, slobbering on my pillow at night (disgusting!), lethargy, and a lot of staring off at nothing. Oh, then there was the Seizure. I was misdiagnosed by the military doctors for two years. They kept telling me that there was nothing wrong - which was what I wanted to hear! Then there was that seizure. I had the seizure at home, on my couch. 911 was not called, and I came out of it OK. But, I knew something was wrong. I found the best doctor around - she ordered an MRI... "A large mass" ( 4th ventricular ependymoma).
Three months in the hospital. Craniotomy (99+%), radiation (fractionated, I got the full dose - no chemo), blood clots, trachea tube, infections, pneumonia, PEG tube, and maybe worst of all - those military nurses! (actually, they were very good).
Since then, I have retired, became the facilitator of an online support group ( the adult ependymoma - part of T.H.E. Brain Trust, (www.braintrust.org/) ,and co-facilitator of an in-person group here in New Jersey ( The Monmouth and Ocean County Brain Tumor Support Group). I have been to brain tumor conferences in five states (so far), I have written an article about BTs that was published in a local newspaper, I have requested my mayor declare Brain Tumor Awareness Week for his city (which he did), I have traveled to Washington, D.C. to speak to elected officials about brain tumors, I have spoken at several conferences. I was highlighted by CNN.COM, and maybe some other things too (you see, I don't remember so good anymore). I have double vision (corrected by prism lenses), balance problems, memory problems, and other things (I told you I forget things!)
But, I am Alive !!!
So now, I drive slower than I used to, I notice more, I enjoy every day and - I appreciate Life !!!
Your BT Buddy