Tuesday, October 16, 2007

It's a Twister

Better get under cover, Sylvester. There’s a storm blowin’ up, a whopper.

--Professor Marvel speaking to his horse as the twister approaches.

Last week I got my results on the part of the tumor I did have removed. The other part of the tumor could not be removed because it would cause more paralysis. That will need radiation for sure. Every day Monday thru Friday (because brain tumors are off on weekends don'tcha know) Even with six weeks of daily trips to Hopkins, continuing my physical and occupational therapy may actually help keep me on an even keel stamina-wise. A regular schedule seems to be the key. Regular meals, naps, exercise etc are good so my body doesn’t slip further. Radiation’s biggest side effect is fatigue. Fatigue is a polite word doctors use for feeling like crap. How much? Don't know. Right now I’m in the habit of 30-45 minutes of upper body work every morning before I leave the bedroom. Hopefully I can keep that up since mornings are best for me anyway.

Now for the interesting part. My type of tumor isn’t that common. It does however have a “marker” in the genes of the tumor which indicate I may respond very well to treatment. Cool! Who need those bits of Chromosomes 1p and 19q anyway?!? Having that marker also makes me a great candidate for oral chemotherapy. With other types of brain tumors, it is given at the same time as the radiation and is the current best treatment available. For my tumor it is optional. It’s a pill, very little side affects if any and since it is optional for me, I can choose to stop it if I do have a bad reaction to it.

The most frustrating thing for me right now is waiting for the appointment with the radiologist. Grrrrrr! Seems he has to approve moving me up in his schedule, as my surgeon and medical oncologist have requested. I finally insisted on the next available at least, so I have something in place that can be cancelled when/if he okays moving the appointment up. Yesterday marked 1 week of waiting patiently for a date


That’s what I’ve been doing the last week. I was seeing my surgeon, the medical oncologist, being evaluated for physical and occupational therapy, and attending my great-niece Megan’s 10th birthday party. Oh! Throw in a four day knitting convention during that time. I wasn’t sitting on my butt wringing my hands.

And I need a nap.

P.S. Don't worry, no more painful seizures. I've had mild ones like I've had for years, but they are fewer than before - probably because I'm more diligent with my medications.

1 comment:

Knitty Cat said...

:) yay for good genes! Fatigue, that's easy with all you've been through. Keep on livin' it up!