Monday, March 21, 2005

HOUSTON - HOUSTON - WE HAVE CONTACT!!!!!!!

THE BRAIN AND THE ANKLE SAID 'HELLO' TO EACH OTHER................

My Physical Therapist, Michael, got real excited today when I told him it "felt" like my ankle was unstable - kinda wobbly - and unsafe. Immediately he started rotating it in all directions. Then he said "push!!!" - nothing - again - again (not unlike child-birth in effort ) - then I "pushed with my good left foot and the right foot said, "oh, I can do that," and it did.

Just a hair's worth, mind you but it bidged - it budged - it moved......

Then, we worked on "Pull", as in pull the foot back. I couldn't see it move - but Michael did.

It is marvelous - it means that below the swelling, below the numbness, below the lack of muscle control - THINGS ARE STILL ALIVE -. Nurse Sis talked to me about nerves, blocked arteries, muscles, etc. etc. etc. - helping me to understand that great things can happen - but it will take time, lots of work, physical therapy - Not quite the HEAL - WALK - RUN............but.............it can happen over time.

I feel rather like the Phoenix in one of the Harry Potter movies (can't remember which one) were he come back to life from a pile of ashes at the bottom of his cage. He looks all straggley, befuddled, half his hair missing - all in all a poor sight.

I mentioned this to someone I was with and said, "I wonder how many times I can come back from the bottom of my cage." From across the room came, "Oh, probably until we shoot ya!!"

Friday, March 18, 2005

I'm the Well One

Man, my staff is dropping like flies. Kid Sis has been sick since we got back home last week. Like go to doctor, you're green all over (and NOT because of St. Patty's Day). The last two days, Nurse Sis seems to be turning the same shade. It's not pretty.

Now, if you can take the joke part of this (I'm working on laughing) - we put a phone call into local University system, telling them to get an update on my latest medical trials and tribulations up North - this should be the easiest way for two giants to communicate with each other - and keep up with my progress.

Okay, so two days later we get a call from my Nurse Manager - I now have an appointment the last day of March - with HOSPICE............ AND AS I STATED IN THE BEGINNING - I'M THE WELL ONE!!!!! Really guys............. and feeling not ready to leave yet.

One mis - step around here and Ding - you're cooked!!! Thank God I have Back-Watchers.
Guess I better start watching the rest of me real close, too - and to make sure my naps don't last too long.

Wednesday, March 16, 2005

Moving On

I'm finally just sitting on the "Pity Pot" when necessary - it is no longer my number one residence. I think the fear of not knowing when/where/how the numbness would stop and the body function lose would end was just overwhelming me. The meds seem to be holding the losses in check, so now all I have to do is learn to cope with, once again, a body foreign to me.

I also have stopped falling out of my walker and off my commode, which was getting very embarrassing as well as painful!! Obviously the balance issue is getting better - I'm not a complete klutz, honest.....

Eva, I need one of my kids to teach me how the do "Comments". I tried to thank you for the great cleaning idea - hit the wrong button - it showed up twice on my machine, but not where it counted...............s0, to you and others I don't answer - I appreciate the help and great ideas. (okay, maybe I should check into klutz a little further!)

Son is working on ramp spec, ideas and planning to come down to install. Can you beat that? I really don't miss getting out of the house yet and suppose I could figure out something if Cabin Fever hits. Til then, I'm meeting with the Physical Therapist, am trying to put income tax stuff together, knit scarves and visualize a marvelous, fully function body.

The girls are still setting up appointments for aides, Occ. Therapist, some kind of transportation to doctors appointments, getting the front yard cleared of grass and shrubs so the ramp can fit - and on - and on.

My, I'm a lot of work.

Sunday, March 13, 2005

Stuff and Things

That's it - our life is surrounded by stuff and things. We had a list made by the time we hit the half way marker for home:

1. Get cleaning staff on board, asap - that would be so we don't get taken away by dog hairs. Nurse Sis' Lab creates enough extra hair for another puppy every other day, Hero doesn't do too bad himself and then there is Pissy with her white and grey tufts dangling everywhere. Plus, we never had a chance to put away Christmas dishes and "stuff" because our bins had become water catchers (and still are).

A friend had made a wonderful list of possible agencies, we called and so, if all goes well, tomorrow our home will begin to shine again. One down.

2. Get Mom fixed up with "things". A wheelchair; an outside ramp, so I won't be house-bound;
a Physical therapist; some safety hand rails; an Occupational Therapist (teach me to type????);
a driver, so Sis' don't have to miss work to get me to Drs. appts.; a shopper, so I don't starve!!!! An aid to help me do whatever it is ; And not a cabana boy in sight, damn this just sucks.

3. Now, get all of the orders from NoCal to the right agency, making sure said agency is Medicare "approved". This, mind you does NOT mean they will pay for a thing (submit bill and see!!!!!!!! This means now we can submit bills, after the fact, to Blue Cross Plan "J".

4. Don't understand? Geez, you got a screwed up brain, or what?

5. I cannot express to you what it means to have my kids making these calls, checking on ramp requirements, trying real hard to keep me at home. It is overwhelming. And to think - "all we have to do is work really hard to get well.... "

Tuesday, March 08, 2005

Command Center

Hi All, We sit, we visit, we eat - a lot - look out belly here come the steroids. Last time I was on them I gained 40 lbs. This time I'll try to keep to low-carb goodies.

NEWS Flash!!!!!Nurse Sis just got THE call--honest--we just now hung up..........They did a PET SCAN yesterday at major hospital. Told us we would know more in 24-36 Hours - go to temp. home and wait. If the picture lights up like a Christmas tree, it was new tumor growth which they would immediately Cyber-knife.

IT DID NOT GLOW!!!!!! Okay, that is a big one out of our way. What is still causing the symptoms in leg, etc. is more of an unknown. They want to keep close track of everything with follow-ups in six weeks. So, I do not have brain cancer. This according to the Drs. is the best possible results.

No more has gone numb,so if the meds can hold their own, I've got a toehold here. Tomorrow I see my great friend, Tony, who is wonderful at helping me visualize. Together I'm sure we can come up with a Command Center of operations to start shrinking that swelling.

Tomorrow we drive south - to Hero and Kid Sis. Thank you all for the holding up--as I said to one friend--I must be getting heavy--she said "no" spirits don't weigh that much.

Love and Light

Mom

Saturday, March 05, 2005

Still Here, Still Waiting

Just a quick note from my son's house to let you know that we don't know anything. Yet.

We had several tests on Thursday, a consult on Friday, and are still waiting on the details on one of the tests. What we do know is there's a lot of swelling on the brain from an unknown cause. But we can't see what's in the middle of it. For now, the main thing is to reduce the swelling through meds. That will help my leg move better, no matter what. We don't know if it's bad news or not-so-bad news, but we're going back Monday for another consultation.

I'm very scared, and very appreciative of all your thoughts, prayers and good wishes. You'll know when we know.

Tuesday, March 01, 2005

We Attack at Dawn

Thursday - that is. Tomorrow we do those thousand and one things left until the last minute: Pay bills due while I'm gone; pray; decide what clothes go under a knee brace and over a foot/calf brace; pray; kiss Hero good-bye for the thousandth time; did I say pray yet?; breathe, I keep forgetting to breathe!

Thursday dawn will find Nurse Sis and me racing up the #5 for about 550 miles - humm- that sounds rather profound! Racing for the dreaded/blessed MRI which will begin to tell the story of my increasingly numb body. It is the first of what may be a lot of other tests , or it may be the one which tells the whole story - another brain tumor. One wonders what to pray for. They tell me I could have one more cyber-knife surgery in my life and possibly one more full brain radiation - that's it.

If this is "just"fall-out (calcification) from past treatments and the meds don't help, I could be in deep ca-ca, with more and more of my left side shutting down. I'm praying for those steroids to kick in. In fact, the Dr. put me on them about 16 hours ago but I still haven't felt like painting a ceiling or cleaning out all the food in the refrig - two of my usual responses.

One of my granddaughters is also under going some tests, blood work, MRI,etc. so please, please send her good thoughts and prayers. All of your support has been so generous and kind - our entire family is grateful. You are indeed our "quiet angels"...

Love and Light, Mom