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Adult Glioblastoma Multi Forme

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Subject: Adult Glioblastoma Multi Forme
Date: 05/22/2004
My mother was diagnosed two weeks ago with this type of tumor at age 83 and had surgery and was presented with the option of radiation. She was all set to do this until the radiology oncologist was so brutally blunt (i.e., I suppose you've made all your arrangements, got your things in order) that she wanted to just cash it in and forget the radiation. It is of course her choice but if the radiation has tolerable side effects I am still hoping to buy all of us some more time together. Is this unrealistic or selfish on my part? If we had this done it will be at another hospital still using the Neuro Oncologist to oversee everything.
Subject: For, Laura How is Your Mom Doing?
Date: 07/24/2004
hi laura

i hope i diden't upset you to much when you asked
for information on glioblastomer because,your mom was diagnosed,there really aren't any good things about brain cancer, most people dont realize the added problems of a care giver helping a loved one, for one thing the brain as we know is where all of our thoughts are formed,
a sick brain cant form the way it used to, a patient may say hurtful things they really dont mean, when the brain is effected loved ones change a calm and loving person may become aggressive and cruel not by choice but the brain can not process as it once did, when my loved one was diagnosed she began to change in a lot of ways she was never critical, never cruel,she may lash out at a loved one,then a few seconds later she would cry, i used to hug her and ask why she was crying her answer was "because i said something i dont mean and apoligize over and over, a few minutes later it would happen again followed by more apoligizes, the only reason i'm telling you this is because you may be confronted with simalar diatribes, please remember shes sick and dosen't mean it, my prayers are with all caregivers who have to deal with this nightmare, good luck to your mom and your family who are going through this, good luck and god bless you all.
Subject: Brutal
Date: 04/02/2005
I'm a rececent GMT patient (surgery 3/4/05).We are all different
w/ me being one who insisted on "book" estimate of survival
AND mean time to tumor reoccurance.

My doc was waaay cool giving me both but also making tthree
other CRITICAL explanations (1 this is cancer and as such is full
of surprises - good and bad,
(2 drew and explined the "normal curve" and how it applies in
this situation (keep in mind he insisted on this even though I
am a school psychologist who has taught this at the Masters
and Doctoral level classes) - he reminded me in particular to
attend to BOTH tails of the curve!, 3) reminded me of my own
family history (both parents with cancers but both also well
over "normal" survival times. He then made it VERY clear that
because of all these features the "norms" we simply invalid for
my case. We therfore went forward planning for the worst (the
norms might not only apply but I might be one over under the
tail of the curve) with aggressive treatment(s) and financial and
other "time sensitive affairs" dealt with quickly BUT to then
move on with life ( though I fall under the right side of the tail
longer term survival maybe one of the miracles).

Subsequently we have found tha the tumor resection was
exceptionally successful and that the wafer insert (FDA
approved only recently) have completely invalidated all the
established survival and mean time to tumor reoccuranc
"norms" and probably moved usual survial timesfrom moths to
years (DON'T assume cures, but significant improvement in
surviva)

This makes Quailty of Life an area of even greater importance.

As a recovering alcoholic I've had the benefit of many years
acquaintaince with ACCEPTANCE and (so far) have not
experienced the difficulties with anger and fear which go with
cancer. Reading/counseling in this area is highly
recommended!


keep in mind being caregiver is in many ways harder than
being the patient (been there done that in both roles
previously) BEST WAY TAKE CARE OF MOM IS TO BE SURE YOU
TAKE CARE OF YOURSELF!!!!!!

this is too long
hang in there and open yourself to prayer
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