discouraged

Greetings, all-

I am so discouraged today.  I've had recurrent Grade III anaplastic astrocytoma, dx'd 8/08.  The recurrence was 9/11 of this year and what's been happening since is seizure activity, which landed me in neurosurgical ICU at U of Penn for a few comatose days, then the EMU (epilepsy monitering unit) for 2 more.  The good news is that the grade has not changed, but the bad news is that there is tumor re-growth.  The other bad news is that I fell (on my knee and face) today on our way into Barnes and Noble.  Of course, my husband was right there to see it all.  I was hoping to get permission to drive again on tuesday, when I see my local nurse practitioner, as well as my doctor if need be.

 Meanwhile, I feel SO TRAPPED!!!!!!  What to do about the white blood count?  What to do about the red blood count?  Is there any way to boost my immune system?  yikesyikesyikes.

I'm enjoying reading everyone else's postings, you know- the old misery loves company thing.

mch

Mary, yikes is right, and hang in there hon! They have drugs to boost your blood counts, right? And then the chemo can crunch those damn tumors. I know you must be frustrated with not driving... so many compromises and losses of control. Just say it out loud so people KNOW how annoying this is. I mean, you are allowed to feel a little berserk and sorry for yourself under these circumstances. Then figure out what you actually can do and what you want to do with each hour of the day. Reach out to people if you feel any energy there at all. The dopamines we get from contact and communication are good for us. I'll be sending love from the rainy northeast.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

Oh, Mary I feel your pain. To not be able to drive, lose our independence is so demoralizing. I just had my third surgery for gbm, right occipital lobe. With each surgery my vision is so much poorer and this time so blurry I'm a menace on the road to myself and others. Still hoping it will clear some and I can get back on the road. It's so awful to have to rely on others all the time. I hope they get your seizures under control and you get your wheeels back soon. May not help at all to know your not alone, but I'm with you!

Mary, dx 9/07. recurrence 4/09, 9/09