LO O O ONG note from Sarah.............

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Posted by Sarah on April 02, 2004 at 20:56:25:

I’ve been trying to get ready to go to Florida, with Tom. I’m not doing too well, considering all of my doctor’s appointments this week. Oral Surgeon, Internist, Colorectal doc….all interfering, and distract me from Tom and his treatment for pc. The worse part I think is that he worries about ME more than himself, and that upsets him…..and when HE’S upset, then I get upset!

We’re actually almost looking forward to Florida, the cancer treatment center, the town house on a canal in Punta Gorda, and feeling lessened responsibilities about “keeping up” with all that has become a very active life here in Bella Vista. Things like Tom’s work, my work, the band, the yard, the house, etc. All things we love, but right now…can’t seem to keep up. We’re looking forward to just being together!!

However, all continues to get complicated. I saw my Oral Surgeon Tuesday, with the fear that the Osteomyelitis has come back in my mandible/jaw. Aching, some needle like pain, and gland tenderness. After prodding on the area of gum tissue, he concurred, as puss was oozing out. On Wednesday, he slit the gum and scraped out dead bone. He said he chipped back to a bit of healthy looking bone, and sent it all to a different pathology lab, this time. One in Texas.

I already had an appointment with my Internist, who was very concerned that while she’s been treating me for a low grade sinus infection for weeks now, that the OM may have gotten into my sinus bones. She ordered a nuclear bone scan, this morning and a soft tissue scan of my head. When the technician took my history, he decided to scan me from head to toe. I haven’t seen a complete report, but as I had an apt. with the Infectious Disease doctor, he called the radiology lab, and they did confirm the jaw OM. Actually, it’s in about the entire right side, a little off center. Lit up like a Xmas tree! I was there from 6:45am to 11:45am, mostly because about 1/3 of the way through, the computerized nuclear scanning machine go a “fatal error” message, and shut down. Fortunately, they have a couple recliners in the waiting room as I was feeling pretty punk.

The ID doc has ordered two full months of Zyvox antibiotics. This is the stuff, that I took for 10 days, at the end of the September –January 7, 2004 ordeal; and finally seemed to “heal” my jaw that time. (Of course, now we know it didn’t complete the job) The 10days treatment then had to be approved by the insurance co. before we could get it filled, because it was $1,600.00 for 10 pills. I haven’t heard if it’s approved yet this time!! I took the script in to Walgreens this afternoon. Can you imagine how much two months worth is going to cost?? Something around $9,600.00! The deductible is pretty hefty, but I can’t remember the % right now. Of course……it’s a WEEK END, which means delaying getting this antibiotic started!!

The “butt” doctor says I’m still having pelvic floor muscle spasms, he guesses due to my spine’s condition. He questioned me cleverly, about any lifting, or taking up kick boxing, or helping a relative move about the time of my latest symptoms. OH YEAH….I remembered the truck wreck I had in January!! He’s such a know it all!!

Oh I diverged…….I can’t drive Tom to St. Louis next week, because I start daily Hyperbaric chamber treatments at the Wound Care Center in Springdale on Monday. He has an apt with the shoulder surgeon, and wanted to work just one day, in Springfield on the way home Tuesday!! I’ve got to let him down.

I hate it, that this is siphoning off our energy, funds, and mental reserves, that I need to spend on Tom!!!! Makes me mad!

I’m not playing in our Brass Band concert, because all the lifting, standing, and stuff that goes with playing percussion……..I just can’t manage it, so Tom and brother Jim went to dress rehearsal tonight without me. It’s going to be a terrific concert!! We’re playing two parts of a very challenging piece, called Hymn of the Highlands. The drumming was SO FUN!
Well, this is our life right now. We’ve had such good health in the past, that I shouldn’t complain!! Just thought WE, as a team, could beat anything that came along…just didn’t know how much it could sap our strength.

Sarah


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