statistics of a glioma blastima multiforma

panormitis said:

wishing you strenght
dear deja,

Thank for your reply and warm words.

I do recognize a lot in what you wrote. Also Panormitis had lost his hair, but has got it all back in a different way, thicker and darker then ever!!! He had a "full moon face" from the dexamethazone last summer but after slowly reducing this medicine his face went back to normal. I remember that after surgery he had a different character , was very much inside himself, no interest in the world around him, not even in his own kids. Confused names very easily and had a short memory problem. All this is nearly gone now, although I notice that he still has a short memory and confuses sometimes names, but only when he gets very tired.

He regained his interest in the children, politics, art and as yourself....... in cooking!!! He used to cook from time to time, but now he is turned out to be an excellent chef, and cooks nearly each day. My daughter who is still at home with us, and myself do the cleaning after wards.

I have been checking out quite some sites now, and also I am really surprised by the amount of "long survivors" ( I hate that word ). Anyhow, it gives us hope and is interesting to read about their experiences. It is actually the first time that I am writing something on a site about our situation. I would really like to learn more about your naturalpathic dr. what sort of supplements did he gave you? Whenever you feel like it and have the energy to write I would love to keep up with your story, although we are on the other side of the ocean, I do feel we are connected. All of us on this site, and funny enough it does make me feel good to know that this exists. Take care of yourself, and whenever you are lonely you can always write down whatever you want, how you feel. It can really help. All the best and wishing you and your beloved ones a nice Sunday.

warmest greeting,
Henriette

mgreggsmith said:

Statistics
Dear Mrs. Panormitis,

I agree with you about statistics - they are just numbers. They are not the 'story' of any individual. As you may have read on this board, I was diagnosed with a grade IV glioblastoma multiforme in October 2006. My neurosurgeon is Johnny Delashaw at OHSU in Portland. My neuro-oncologist is Edward Neuwelt. Those to men are first class. But my initial diagnosis was dire. One of the nurses pulled me aside and said I didn't have long to live and if there was anything I wanted to do in life, do it now. Some of that initial period is a daze, but someone opined that I had somewhere between 3 months and 18 months to live, with 12 months begin a good guess. I had surgery, radiation and I am still on a monthly five-day course of Temodar. When my first MRI came in clear, the docs were very pleased. Then the next and the next and the next. All clear. I don't know why I'm still here. The docs don't know why I'm still here. But I am. It has taken me a while to relax and just live my life rather than building up stress until the next MRI - and then feel elated - briefly - after another clear MRI. I've read all the books, eat well, exercise moderately - and none of that may have any impact on my fate. It's all a mystery. However, I suspect that anything that improves my immune system is useful. But I don't know how useful. I think the important thing is to surrender to the reality that all of us, someday, will die. But we don't know when. Until that day, live life fully.

Gregg

hope4GBM said:

Gregg
Great to hear your story! My husband's doctors are also super guys, they have been wonderful. Have you been on Temodar for 5 years? He is on Temodar and also a trial drug-Zachmia. He will continue the 5 days on and 23 off until December. He takes the trial drug every other day. After Dec. he will just be on Zachmia if all tests stay the same with no new cell growth. He has had 2 post- op MRI'S that have been clear. Sounds a lot like you- what area was your tumor in?

I like your attitude- I'm staying positive and trying not to think WHY.
We don't know what tomorrow will bring but you inspire me to get through this stage of whats next? We are still in shock. I haven't relaxed yet but sure hope to and be as strong as possible for my husband.
We are glad you are here for us!
I wish you many happy years ahead- God Bless!

hope4GBM

mgreggsmith said:

Poem - here it is:
REMAINDER OF A LIFE

If I were told:
By evening you will die,
so what will you do until then?
I would look at my wristwatch,
I'd drink a glass of juice,
bite an apple,
contemplate at length an ant that has found its food,
then look at my wristwatch.
There'd be time left to shave my beard
and dive in a bath, obsess:
"There must be an adornment for writing,
so let it be a blue garment."
I'd sit until noon alive at my desk
but wouldn't see the trace of color in the words,
white, white, white . . .
I'd prepare my last lunch,
pour wine in two glasses: one for me
and one for the one who will come without appointment,
then I'd take a nap between two dreams.
But my snoring would wake me . . .
so I'd look at my wristwatch:
and there'd be time left for reading.
I'd read a chapter in Dante and half of a mu allaqah
and see how my life goes from me
to the others, but I wouldn't ask who
would fill what's missing in it.
That's it, then?
That's it, that's it.
Then what?
Then I'd comb my hair and throw away the poem . . .
this poem, in the trash,
and put on the latest fashion in Italian shirts,
parade myself in an entourage of Spanish violins,
and walk to the grave!

Mahmoud Darwish
(Translated, from the Arabic, by Fady Joudah.)

The New Yorker, May 14, 2007