My Name Is
Bruce B
Here is my story…
I was diagnosed in January 1995. Surgery was just two days later. Everything was happening so fast, I had absolutely no time to consider any options. I simply went by the decisions my medical staff made for me. Fortunately, they were the correct decisions, but I certainly would not recommend this approach for anyone. I got lucky.
Since that time, I have found that knowledge is the answer. There is a whole lot to learn. I had my surgery 11 years ago, and I learn something new about tumors every day!
I don’t remember being told how my recovery would progress, or how long it would take. I was in the military at the time; I remember snickering when my doctor told me we would “start out with 3 months medical leave”. In fact, I was in the hospital for 3 months.
Surgery is the first option for ependymomas. That is called a craniotomy. 99+% was removed surgically (debulked, resected). At the time, radiation was prescribed for cases where complete tumor removal was not achieved. I received fractionated radiation to the area in hopes it would kill any remaining tumor cells. I got the full dose – which means I cannot receive any more radiation treatments in my lifetime. All of this was in the months of January & February, 1995. I was treated at the National Naval Medical Center in Bethesda, MD, and Walter Reed Army Medical Center in Washington, D.C.
After surgery, I was left with some rather strange deficits. Some have left me, some have not. I was confined to a wheelchair. I had to relearn how to sit up from a lying position. I could not swallow or breathe on my own. I saw two of everything. Physical therapy took care of the first two problems (although I still have balance problems, and will never run again). The next two problems were resolved with time, and I still see double – although this is corrected by prism glasses. During my hospitalization, I developed pneumonia. I got infections, and blood clots. Probably other things too. Everything was fixed by this medicine or that one, or this device or that one.
I now realize that I also have some of the “classic” discrepancies – terrible “selective” memory problems, trouble with word finding. I have frequent headaches. I take no medicines (for which I feel very fortunate), treatment for me is over. I am as good as I will ever be. And, that is OK, because I feel I got off easy – it could have been much worse.
I used to be quite the outdoorsman – camping, hiking, fishing etc. No more, but I have photos and memories.
I am a strong believer in having a good attitude. My belief is medically unfounded, but I truly believe that a good attitude can positively affect a prognosis. If not, at least it will allow you to enjoy life more!
It is MOST important to enjoy whatever you have left. Brain tumor, old age, disease, something will get you – that is a guarantee. ENJOY WHAT IS LEFT!!!
Tips
Learn, learn, then learn some more.
Get a second opinion before any procedures.
Search out the biggest and best tumor treatment centers, and the best neurosurgeon there. It is a fact; the better facilities have better results.
Find a support group. Whether you are a patient or a caregiver, find a support group. No kidding about this.
Take notes of everything – every time you see a doctor, every procedure, everything. Have a friend or family member take notes too. They are that important.
Read statistics you find on the web – if you want. BUT – be aware that statistics can be dismal, and mean nothing to your case! I read them, and according to them, I should have been gone a long time ago…
But I am not gone!!!
Bruce
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