Stonehenge on the Terrace

Excy's converting the therapy pool from running exclusively on propane to a combination of fuel and electricity, and it involves all manner of complicated pipes, tubing, motors, and gadgets he's spent months tracking down in stores and on the internet and then building and assembling.

He took me into the 'engine room/pump house' or whatever the room with all the equipment is in is called, and tried explaining it to me, but my coherent husband suddenly began speaking in tongues or Swahili, so all I could do was nod meaningfully and say "wow" until he stopped speaking. I was impressed, of course, which was the point and all he hoped for, and the end result will be a hot pool again, which is all I hope for. So, as Gary Cooper's 'sheriff' says to his new 'bride' Grace Kelly in High Noon, "that's the whole thing." More info than that on the subject and my eyes glaze. Fortunately Excy knows this.

At one point he had to solder some pipes and set up a few cinder bricks stacked on the terrace to the height he needed and they're still there a week later. Excy being Excy, this could mean he's not finished, or it could mean he's wandered off and left them on permanent display until I gently bitch them off to some unprominent spot. Hosting Thanksgiving tomorrow means this will happen today. (Mostly my nudging means things happen eventually, the general rule of thumb being three weeks after my reminders).

Any hoo -- the first night the bricks were on the terrace, I threw the dog food out for the 'coons and critters as usual when it grew dark and didn't think anything about it until later when I was walking down the hall to the bedroom. The corridor is glass so I always glance out to see if we have any 'customers' on the terrace and if they need more food. Three coons were clustered around the blocks, sort of scratching their heads and ohhing and ahhing, and touching the bricks. It reminded me of that scene in the movie 2001 where the apes are admiring the monolith. (Anyone want to explain that movie to me? Oh forget it - I don't really care). At one point in the evening, several more 'coons were examining the bricks and a few others appeared genuinely concerned and in consultation off to the side. By the end of the night I would not have been surprised to see choice offerings laid at the foot of the brick or to see the 'coons in makeshift shriner's hats worshiping in some pagan rite.

Everything's calmed down as the week's gone by, and even the skunks (notoriously timid and shy) shuffle by unconcernedly now.

Cool.....

Just logged on and noticed I have 92 posts and 92 followers...cool! Thanks for reading. Happy Thanksgiving to all!

I am...The Joker!

I was trolling Dillards last week in my continuing quest to find the perfect shade of red lipstick when my new BF came up to me and said, "Okay, I'm just gonna blurt it out here - your look? Your coloring? It's working for you..." I mean, how could you not love this man?? I wanted to hijack him and take him shopping with me immediately. He was in town from NYC setting up the new Keihl's counter, for which my real BF is now in charge of. (Oh, and by the way? Cameos are totally 'in' this spring. So bring on Granny's brooch).

I had just returned the disastrous Estee Lauder "12 hour" red lipstick I had bought weeks before. I had put in on, taken a sip of tea, and found all of it on the mug. I made a few more stabs at it, but it would either feather or end up on my teeth. Grrrr.

When I got to the counter, the lady there said, "Really? I have to remove it at the end of the day with a makeup remover!" Knowing she was lying through her teeth I dispensed with my usual show of Southern graciousness and said, "Good for you! Return, please." She asked if I wanted to try a different color. God help me.

On Mr. Congeniality's recommendation, I tried the Giorgio Armani counter, where I met a wonderful French woman. The lipsticks were so new, samples weren't even out yet -- thus not stolen...I requested the shades of red that went with my shade of coloring and we decided on two. I selected one to try on, and she insisted she put in on me herself. I reluctantly and awkwardly climbed up on those high chairs they force adult women into (which aren't, incidentally, convenient for the disabled). She made a show of lining my Clara Bow and filled it in with the stick and flourished a hand mirror before me.

Have you ever wanted to wipe off product immediately upon seeing it? I choked back a laugh. Seriously? That's what you think my lips look like? They were twice their normal size -- I looked like Goldie Hawn in The First Wife's Club. Duck lips. Clown face. This child had never colored between the lines. I wanted to wipe most of it away but did not want to hurt her feelings. People were watching. (Hopefully in sympathy, but maybe they were just mildly curious to see how I'd react). The color, however, was great, so I promised her this was a test drive and if it lived up to the claims I'd be back to pick it up - she assured me it had so much staying power it'd last until dinner (this was mid-afternoon).

I decided to stretch my lips as wide as I could in a grin until I got to the car to make adjustments as best I could. Several people commented on my lip color as I made my way through the store, which made me sweat a bit. Once in the car I whipped out the kleenex and went to work. Dang! It really did have staying power....

After the grocery I headed home. When he saw me, Excy cocked his head and stared at my face several long seconds and then announced that I looked like The Joker from Batman and it was creeping him out.

He didn't even want me to wait until I had put away the groceries.
Product: Giorgio Armani
Red #400 Liner #4
Wears great, feels wonderful.
Did go back to buy it

Seven Things.....

I was supposed to tell 7 things about myself when I picked up the flower bouquet the other day and it was a hellish week so I am just now responding.....hopefully to be back in action again......

1) I love to eat and think that if I wore a burka I would quickly gain 20 more lbs. Getting to hide behind all that fabric? I'd totally go for it. That's one reason sweat pants are dangerous. Too much room for growth...

2) When I was a kid I had a 'Lauren Hutton' gap I could spit water through and b/c of it I could also whistle in class without ever being found out. I got braces (for it and an overbite) but probably wouldn't have bothered as I got older...

3) I am a lone wolf and require some 'down time' every day to be alone and recharge my batteries...

4) I have a phone phobia -- hate to talk on the phone -- unless it's LD or I haven't talked with the caller in awhile. It's not bad once I actually answer -- which I never do, drives Excy crazy, since he fields calls (hey, just let the 'electronic butler' do it but a ringing phone is his kryptomite) -- my cell phone is kept in the car for emergencies or last-minute calls and I have to look up the number for people if they need to call, I use it so seldom...

5) My guilty pleasure for crap food are those Hostess cupcakes with the chocolate frosting and white icing. I have to avert my eyes when I pass them in the store...and for some reason, when we make road trips, I require cherry flavored Blow Pops, though I spit them out as soon as the flavor is gone...

6) I'm a snob about people using a toothpick - just hate it. So I carry dental floss in the car and my purse...

7) Dogs make me nervous. Can they read my thoughts that I don't much care for them? My grandmom's dog bit me when I was five and I guess ever since then, making dog friends is an effort...

How Typical is It...

that the street you need to turn on isn't marked

the only dollar bill you have isn't accepted by the vending machine and there isn't a change machine

the store you go to specifically for a certain item won't have it or will be out of it

the phone will ring as you sit down to dinner

the power will go out just before the climax of the movie

you smiled at the word 'climax'

you believe the claims of a 12-hour lipstick even when you know better

The Game Plan

Holy crow -- are you as glad this medical posting is coming to an end as I am writing it?? Reliving it has been rather a slog this week. It takes so long just to tell the highlights of 'the story,' and while it is cathartic and hopefully helpful, as I've said before, I don't dwell on it but just -- move on....

I want to thank all you readers for sticking with me through these posts, and for your generous and touching comments. It is a privilege getting to 'know' you all. This blogging thing has been an amazing journey from the start....it's so interesting to read glimpses into so many individual lives -- all unique - the one constant is my feeling that you are all so thoughtful, and open-hearted and generous. Thank you. Your support is a blessing. You are all wonderful.

Tomorrow I get an X-ray of my neck for Dr. Cutie (he has been pleased with the healing so far), and an H1N1 shot. I have debated and resisted this, but Excy wouldn't drop it. Finally after em-ing NIH and Emory drs. who both said I should get one, I am. My acupuncturist advised against it; felt it was a bit overblown and if I did get sick he would be able to handle it, but my drs said even a bad cold could shut down 'the kid' and they felt the precaution was worth any side-effect from the 'cure.' Blah.

In late Jan. or early Feb. we're off to NIH for another round of tests and will be able to gauge how the tumor on 'the kid' is growing. So far, the ones on the cerebellum and spine aren't changing (they can grow very slowly and often it's the cysts that pop up that can cause the problems, as was the case with two of my brain surgeries).

Emory dr. this summer argued that we know the kidney tumor won't get any smaller, and we should just go ahead and operate while we know it hasn't spread and while we have a donor. NIH argued that the surgery to remove the 'kid' isn't without great risk since they've been in my abdomen four times and there's a lot of scar tissue, and the possibility of messing up the remaining pancreas is great, etc.al. Also, the longer I am on my own kidney power the longer I am living without the possibility of the transplant not working out....I thought long and hard about what both sides had to say. I confess I did land on the side of removing the kidney and getting on with it b/c if the tumor does metastasize it's game over, since these tumors when cancerous spread like wildfire and do not respond to chemo or radiation. Finally told them both the way I felt but that hey, I'm not the one with the medical degree, so they needed to consult with each other and their staff and research teams and come to a mutual decision. Which is how the NIH opinion won out.

When the inevitable does happen, the plan is to have the surgery at NIH, then come home for dialysis until pathology determines there is no spread and I recover, and then go to Emory with C. for the transplant. They have assured me that in the meantime, if a brain or spinal tumor begins to cause problems, surgery for it should cause no additional risk to the kidney. It didn't when I had surgery this spring.

C. is incredible. It goes without saying that she is my hero, but I will say it anyway. She is amazing to me. She is a WOW (see WOW post 9/21), a wife, a mother, and a grandmother. We aren't real close friends n the sense of talking a lot and hanging out b/c we are both busy and she works. We are WOW sisters in the sense we share some common interests and out looks on life and I have always felt an affinity for her. She decided on her own she wanted to do this, she did a lot of research, and she has never wavered in her decision. She and I felt from the first that it would work out, and she was the first person tested and has been a high match, which is in itself sort of incredible. I have one sibling but he declined to be tested as a donor. My parents have the own health issues, and the cut-off age for donors is 60 anyway. C. is a blessing in so many ways.

Finally after counseling and a year of passing all the tests she can have done in AR, the time came for us to send her to Emory. She just needed one more test, which they assured both of us was almost a formality at this point. So when Excy came in a few weeks afterwards and said Emory said she wasn't a match -- we were all stunned. C. didn't take the decision easily or at face value but argued to re-take it. At first they said 'no.' She waited and called the dept. head, who had been on vacation that week. She said okay, but it probably wouldn't change anything. C. re-took the test - and passed. They said it was probably a problem with the lab! In the meantime, two friends who had heard the news were trying to call the 800 number to get started on being tested. The hot line is supposed to respond within 24 hrs to anyone who calls. After days of calling and getting no feedback they called us about it, and when we em'd we learned they had issued cards with the wrong phone number. All this wasn't giving us warm fuzzies about getting transplanted there. And you just do not treat people that way. Particularly people facing these issues. We finally got the head dr., and the head of the program, and it got sorted out. C. went to Emory over the summer and was treated very well, as we have been whenever we've been there, and so far, we are all on board. A nonprofit account had to be set up for my transplant costs and meds, and the WOWs are chairing that. So, things are falling into place. Fingers are crossed.

When I have the transplant, I will have to live in Atlanta four weeks. Since we were going back and forth so often for the appts and then for the neck surgery, we joined the High Museum, and we have good friends who live on Peachtree we stay with some, and Atlanta is pretty fabulous to visit- so much to see and do. I know I will have the hardest time missing my animal kids! There is a house people can stay in while recovering from surgery or during treatment, just off the campus.

I am lucky beyond measure to have survived as long as I have, and to have found the surgeons who have kept me going. NIH has also been a god-send, and has enabled us to have some sort of semblance of a life out from under the constant financial stresses and pressures chronic illness can create. I'm blessed beyond measure, too, for the stead-fast support of family and so many friends. Finally, for Excy, who has seen me and taken care of me in ways one would never want to be seen and in situations one hopes never to be in, and somehow, miraculously, still loves me, wants to be with me, and finds me desirable and lovable. Incredible.

2009

I will post my current status tomorrow so this post won't be so long...

The three brain surgeries earlier had resulted in the ligaments in my neck being stretched. Basically my head was being held on up one side of my neck. My neurosurgeon said between this and a bulging disc, I could end up wearing a neck brace for life if I didn't have a cervical spine stabilization. Between that and the pain I was in, the decision was a no-brainer. NIH couldn't do the surgery though. After the usual ineffectual attempts to get the required surgery in AR (in the future I won't bother, as it's a waste of time and money to even try), I ended up at Emory in Atlanta. My neuro had overheard us discussing going there to meet with a kidney transplant surgeon who had been at NIH, and shouted at us as we were leaving to see a colleague of his there.

So we made an appt with him while beginning the process of getting lined up for a kidney in the future.
This was the first truly good-looking doctor I've had. Better yet, he called after-hrs on his cell -- gave us his cell number -- to say he read the MRIs, understood the pain I was in, commended me for being as strong as I was under the circumstances, and said he'd take care of it! In contrast, the surgeons in AR hadn't felt the situation was critical even though I was in such pain I was living with a heating pad and doubling up my narcotics. And despite my surgeon at NIH calling them, they never bothered to return his calls. (Something he said has never happened before). The thing I couldn't figure out was NIH gives one of the hospitals their major grant money; you'd think they'd at least be courteous due to that...so I felt vindicated.

Dr. Cutie's nurse was funny-- she told us most women looked awful their first appt with Dr. Cutie (when you feel bad, making the effort to look good is difficult and sometimes too much exertion) - but she said on the second appt., no matter how they feel, she said they are always dressed to the nines.

Note: My personal theory through the years -- Excy laughs at me -- is I always look my best for doctor appointments regardless of how I feel. I believe if they see me well dressed and taking care of myself they in turn may treat me with more care. Whether or not that's true I have no idea. Just one of my many quirks.

Nurse for Dr. Cutie also said he used to model in college to pay the bills -- he was 'discovered' walking through the campus -- and sometimes to relieve tension in the OR, he's been known to strike a model pose. I do know he has a sense of humor. The morning of my surgery he came in and marked my neck, saying it was to differentiate me from the gall bladder patient in the next room. I dunno, maybe he wasn't kidding.

The surgery was in May, and I looked like a Star Wars storm trooper most of the summer with the big brace, and it prevented me from driving and such. I had 8 weeks of PT, and am not 100% by any means but the pain is tolerable from what it was before.

Tomorrow I will write the current game plan for the future.