Back to the Battle of Glioblastoma

Last December, I was in the emergency room at the VA hospital. The Doc looked at my chart and said: "Nobody survives Glioblastoma". I was quite shocked by his comment especially since I had already made it past the 3 months to 12 months death sentence I was initially given when the biopsy came in.

Since 95% die within that time frame, I began to look at the ones that didn't. I saw death rates listed at 18 months, 2  years, 3 years, 4 years and then 5. There were a few that made it past the 99% death rate at 5 years but that was only a percentage point. When I made it past 3 years, they started calling me the "Miracle Man". When I made it past 4 years, that changed to "Mr. Impossible". The ER doctor made his statement 4 years 5 months and 13 days into my battle.

I knew he wasn't a brain surgeon and concluded, from his statement, that he must have been a proctologist because he surely didn't know his head from his ass as it related to Glioblastoma Multiform Grade 4 malignant brain cancer. In any event, it really pissed me off.

Maintaining a positive mental attitude is sometimes a difficult thing. When you consider the fact that I had been an Army helicopter pilot that obtained a fixed wing rating after I returned from Vietnam and that I eventually bought my own airplanes, one might think that losing the ability to remain a pilot, might be somewhat depressing. I got over it and continued to move forward. I lost the ability to ride my motorcycles and I got over that, too.

With the loss of my right eye, I also lost a bit of stability and had to start using a walking cane. I don't have to use it every day but, since a part of every day is not good, I treat it like that credit card advertisement. I never leave home without it.

In any event, I just received a "Cancer Free" report from Cat Scan. That was a few weeks ago. I decided to issue a complaint with my Oncologist about the Doctor's statement in the ER room and he had me report to the Patient Advocate Office and give a detailed account of the incident. I did that and it was forwarded to the Director of the hospital.

Now, out of the clear blue sky, right after the Cancer Free Cat Scan report, I get orders to report to an off site health provider for an MRI Brain Scan. It's important to note that I have been forbidden to have the MRI procedure as the last one put me in the ER as I am allergic to the new dye that they use for "Contrast".

When I was injected with the new dye, I had trouble breathing and broke out with a rash that covered my entire body. They shut down the MRI called for a crash cart to come to MRI and then hauled me off to the ER. Tim jr. was there and was really pissed as he had already told them NOT to inject me with the dye. In any event, that was when I met the ER doctor mentioned above. It was sometime in 2011 when that happened and I've not had an MRI since then. Thus, the confusion that came when the letter arrived for me to report for an MRI that was to be done "off site".

I'm certain that my Oncologist did not order this. My niece is his nurse and I called her when it came in the mail to ask if she knew anything about it. She said no. Mighty strange that I would start having difficulty swallowing and some head aches and then, all of a sudden, get a green light from Oncology and Neurology only to find the letter in the mail box yesterday.

I'm not sure if my report to the Patient Advocates Office resulted in the subject Doctor being called on the carpet or not. Nor am I sure if he ordered the MRI but one thing I am sure about is this: I don't appreciate being thrown under the bus after I have outlived 99% of the Glioblastoma patients. Where's the respect? Hmmm, must be a civilian.

More after I return from the hospital. Just want to let y'all know this in case I have a stroke or something. I was fine before Doctor Butthead started messing with me.