News from Auburn/EAMC Fri Sept 26, 2008
This has been an exciting week for
us!
Health
update
I met with Dr. Salzman at the
UAB/Kirklin Clinic Bone Marrow Transplant group for a re-evaluation. She
told me that after my last evaluation the team was very strongly opposed to
giving me a bone marrow transplant. However, after the most recent PET
scan she was more inclined to support it. The earlier PET scans showed
that, although the tumor was largely necrotic, most of the mass "lit up" in the
scan. The most recent scan showed small isolated points of activity.
Dr. Salzman believes that means that I likely still have active tumor
cells. The team met Wednesday afternoon, and they decided to give me
MUGA/PFT tests (heart/lung tests) to get some more information on how I'm doing.
Then they'll make a decision. (Yep, the BMT team is EXTREMELY
cautious.)
For those of you waiting to
hear about my schedule for treatment: so am I. Until these tests and
evaluations are done, I will be in limbo for
awhile.
Naturally, with an "exam"
coming up, I came down with a virus on Wednesday. (Actually, it's working
its way through the whole household. I'm the last one to get it.) My
breathing has become much more shallow and uncomfortable. Thursday night
my coughing was so bad that I woke Viva. She checked my blood oxygen (we
have a borrowed O2sat meter) which had dipped just below 90%. We decided
that it would be a good idea to get checked, so we spent the first four hours of
Friday morning at the EAMC emergency room. No pneumonia on the X-rays
(why does the X-ray room have to kept at 42 degrees?), white cell
count was good, blood work and other tests were fine, but my fever was 100.8.
Dr Crosby gave me IV antibiotics and said he was pretty sure I'm just
dealing with a respiratory virus.
So,
I'm continuing to do "deep breathing," but not quite as deep, while I wait for
the virus to run its course.
Other
news
My sister Heather and her 1 year old
daughter Tyler came to visit Sat-Tues this week. Heather and Viva, both
nurses, are incredible caretakers. While Vi was at work this week, Heather
cleaned the kitchen and cooked about 4 months of food for us. Ok, maybe
not four months, but she was diligent to keep in mind our dietary restrictions.
Our fridge and freezers are full. Along with Heather's diligent care
Tyler charmed everyone she met. Heather has been teaching her sign
language. (I learned in my college sign classes that kids can learn to
sign long before they can speak.) Tyler's vocabulary is so
cute:
Dog: (pants like a dog,
then smiles) Spoken sound: "Ba."
Bird:
(wiggle forefinger to thumb like a bird singing.) Spoken sound:
"Ba."
And her favorite: Book: (Put
hands together and open like a book). Spoken sound: "Ba." Tyler
likes to use this one to delay being put to bed. She is a scary smart
little girl!
Tyler does say words
besides "Ba." If it looked like I was eating something yummy, she would
hold out her hand and loudly proclaim, ""Mmmmmmm!" If this is her
intellect at 12 months Heather's going to have quite a job when we get to
kindergarden, to say nothing of high
school!
Today Kayla and her boyfriend
David were over to visit. (He's a mechanical engineering student at
Auburn.) I brought a banana from the kitchen into the living room, held it
up to my ear and said, "Someone should make a cell phone that looks like this."
David immediately broke into song. Apparently Raffi sang a song
about bananas and telephones. Poor Kayla wasn't ready for the two of us to
spontaneously tag team. It was a wonderful
moment!
Finally, I discovered that the
"shock value" humor that I enjoy so much is very much a part of my family
makeup. Heather, Tyler, Viva and I went to the Outback restaurant
over the weekend. I'm still using my wheelchair. As I was leaving
the restaurant a group of college girls started to come in, saw me on my way
out, and dutifully held the doors open for me. Behind me, Heather said in
a beligerent voice, "Hey, wait your turn buddy!" "Sorry, Heather, my
fault."
I
wish we could have taken a picture of their
faces.
My scans for lung and heart
muscle function at the hospital in UAB are this coming Thursday. I meet
with Dr. Salzman the week after. I'll let you know what I find
out.
Posted: Fri - September 26, 2008 at 08:22 PM
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