Friday, October 29, 2010

The Long Awaited Big Update

Ok, sorry I didn't post this immediately but by the time we got back to the hotel I was tired so I rested. Here's the low-down on what we found out at the doctor today.

  • The oozing isn't anything to be concerned with. It's just the build up of swelling that was there working it's way out. The wound itself has sealed nicely. The Neuro Surgeon cleaned it up really well and showed us what we can do to keep it that way. He basically had to unteach us everything we knew about wound treatment from doctors in the past. It looks a lot better now and we've got some nice protection on it to keep it from destroying all the clothes and hats I've got. Meaning I can actually go out in public again and will be able to do my Halloween costume when I get home and finish cleaning it up with a nice shower. mmmmm.
  • The official results with the pathology is that there was a lot of scar tissue and necrosis. There was tumor of an undetermined quality being either leftover grade 3 with radiation changes or a grade 4. They aren't really concerned with the actual grade because with where mine currently sits (they removed everything that was there) the treatment is the same either way.
  • Based on pathology, I will begin doing Temodar (a "mild" chemotherapy that is highly effective in the brain) when I feel I am ready. I will do the treatment at home locally with the guidance of my Neuro Oncologist at Mayo. I will be on a 6 month protocol to start with 5 days on then 23 off. This is pretty standard protocol. We'll make decisions on whether to keep on it at that time rather than trying to predict the future. If the Temodar doesn't seem to do what we hope (keep anything from changing in MRIs) then there are several other options at our disposal in which we will discuss at that time. They are hopeful at this time that we should NOT have to do anything further from this currently. (In other words, they feel it resembles the grade three that's been there all along with radiation change not a fast moving grade four, which is very good!)
  • I will begin the steroid taper today and with a little luck will be off of it by Thanksgiving. YAY!!!
All it all, it was what we expected to hear and what we were prepared to undertake. Might be some rough days ahead with steroid transition and then Temodar but Temodar is usually easily tolerated and he said it's one of those that motivation and determination really does affect how you let it effect you. Therefore, he felt it shouldn't effect my life in any way other than maybe making me fatigue more easily, taking a couple of more meds, and being more careful when around those that are sick... all of which I should be doing anyway.

That's the update. Things are good, I'm looking forward to going to eat here in an hour or so and then hopefully a ooze free sleep tonight. Home sweet home tomorrow!!! AHHHHHH my own bed!!!!

Love and Huggles all. All of our prayers has done it again!

-- Amy - Fight Like a Girl!!!

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