Thursday, August 18, 2016

The Ghost Stirs

My husband and I were looking at a calendar, discussing the ghost that was inhabiting my head and when it will be gone....

And I won't be rid of it until November 2017....

*shudders*

It makes sense, as I have five (five and a half, per hubby) weeks of radiation, which, at the most distant, puts me at October 5th before my brain is considered radiated enough to have killed off the last of the ghostlings...

And then one month to recover before they start the chemotherapy at 5 days on, then 23 days off...

*sighs*

Yep! It's going to be November of 2017 before I can officially consider the ghosts busted in my head!

So why is this what I'm thinking of?

Zuul from Ghostbusters

Of course, in between times, I'll have to stutter like Foster Brooks whenever my mind is playing tricks. (Half an hour to tell my husband I was going out to roll up windows the other night because I kept trying to say "roll up"......*sigh*)

Heaven help me!

ADDENDUM 8/21/16: My scheduled is 8:30 am at Maine Medical Center, and the official date of "release" from the August 29th schedule is, indeed, the 6th of October (because of the Labor Day Holiday). Again I say "Heaven help me"!

Tuesday, August 9, 2016

The Ghost in the Machine - Part Two

I'm finally able to make my way to this blog again to relate to you the difficulties that my brain had with this whole "we're going to go into your brain and remove this thing". The tumor that I showed you the last time was a little bit complicated when the doctor got in there to remove it.

As planned, we were at the medical facility to have ourselves checked in. As my husband watched, I was put into a johnny, had a line put in for them to insert medications and liquids, and was wheeled out to surgery. It was an awake neurosurgery, giving the neurosurgeon the opportunity to have me awake and aware - but something went wrong. The first indication was when I started slurring my words. (Let's face it, folks, I sounded like I had a few two many on my way in, but I hadn't had anything.) The doctor went out to my family as I was taken to recovery, and my husband was told that they had caused some minor effects (such as a seizure or two), and I had two recover my speach before we could try again.

The first week was getting the seizures under control. This was, according to my husbands Facebook pages, a bit of a trick. He interrupted things for the nursing staff more than once in which they were ignoring a seizure...And has been my primary fighter when if comes to letting the doctors know what they have in their neurosurgery department as far as nurses.

The second week became a bit of a race for my doc. He had a glioma to continue getting out, but my speech was sketchy, at best. The result was a four day stint at the New England Rehabilitiation Hospital of Portland. Great bunch of people! Got me saying my words, at least as far the neurosurgeon wanted, in short order and got me in for the second time under the knife for July 19th....

And this time, everything came out all right.

The shit hit the fan when my husband came in on Friday to have my tell him that I had been told I was going home when he hadn't received that memo. He had things that needed to happen before I came home - and he probably needed me to stay in for the weekend, as it turned out.

There was a drug that wasn't set home at all that was important to my survival...

There was a drug that I had one version of that I needed to be taking three of...

And I feel for my husband, because I was in no shape for him to be comfortable leaving me home during that time when he needed me to be.

It's been four weeks since my second surgery. I've been home since the Friday after that, getting myself as ready for the radiation as I can be - including gaining back all the weight lost after all that hospital food. I'm told by the oncologist that I need to be in the best shape I can be to survive the radiation, and I'm trying to built back my muscles.

In the meantime, we're waiting for the American Cancer Society to report to us as to how many days of my five scheduled weeks (or five and a half, as my husband keeps saying) they're going to cover so I can cover the rest. It's one of the sad things about living here. With my license taken away for three months because of the seizures, I can't drive myself to the radioligist, and there are very few forms if public transporation.

We're at the mercy of those who want to live out here or who want to drive through here.

Hopefully, we have enough people who can drive me....


ADDENDUM 8/17:  We've received our "Action Plan" from the American Cancer Society - and there are no "free rides" for me from here. I only hope that they've got my schedule for me to be able to provide my own rides....