News from Auburn Wednesday December 31, 2008
In this
issue:
1) Health
update
2) Family
visitors
3) A song from my nephew
Gabriel
4) A poem from Kayla - a
daddy-daughter moment.
Health
update
I've tended to keep this section
of the newsletter fairly upbeat, and this seems to have left many people with a
falsely positive impression of my condition. Today I finished my first
treatment with Dr. Graves of Rituxin-Bendamustine. I haven't (to my
knowledge) experienced the side effects of Bendamustine yet, but it is very
common to lose significant amounts of red and white blood cells. In other
words, I need to avoid germs for
awhile.
With that treatment behind
me, it is entirely possible that my condition will start to improve; we
don't know. I am going to enjoy each day as it comes. For now, I'm
going to outline some of the symptoms of the last week, not so that you can say,
"Oh, poor Scotte," but so that you know my starting point with the new
regimen.
1. Fever/chills/nausea: I have
suffered fevers over the last few weeks on an every-few-days basis.
Last week (Monday-Sunday) they became daily, ranging from 100.8 at the
start of the week to 102.2 on Saturday and Sunday, from 1-8 hours on each day.
When the fever breaks, I sweat a very great deal so that we have to
change my clothes. While the fever is active, I have to be careful not to
get chills, or else this will trigger a coughing fit and that very often
leads to vomiting anywhere from once to four times a day (I haven't thrown
up since Monday, though, perhaps because of a change in meds on Monday (see #4
below).
2. Breathing: Last June I was
given an incentive spirometer to measure breath volume. I've been using it
pretty regularly each morning to track my progress. For November and most
of December my breath volume was around 2 liters. However, in December, it
dropped to around 1 liter and I eventually had to stop using it because it would
trigger a coughing fit. I've been coughing up clear material
throughout the last few weeks, but my lungs and throat are getting raw from it
so I need to get that under control.
I
also have a blood oxygen meter at home that I check each morning. Normal
people have O2sat of around 98%. Smokers have o2sat around 92%.
Lately I've been around 90% at rest, lower than that if I walk anywhere in
the house - and that's with an oxygen hose in my
nose!
3. My pulse, when I was
healthy, was in the 60's. It briefly dropped that low after the blood
transfusion in November, but has slowly increased to around 110-115 at rest, and
it can easily go to 130-150 when I "exert" myself, which means walking, drying
myself after a shower, sitting in any chair besides the recliner chair, or
standing in place for more than a few minutes. That can be uncomfortable,
especially with a limited air
supply.
4. Monday morning I suddenly
had a sudden overwhelming stabbing pain in my abdomen; based on my conduct at
the time, my sister Heather, RN, said that the pain was a 10 on a scale of 1-10.
At first, its location made me suspect kidney stones, but it's moved about
a bit toward the front of my abdomen. Heather called Dr. Graves, who
prescribed a pain patch (I don't remember the drug name) and Roxanol (liquid
morphine) for breakthrough pain. Since that time the pain has been well
regulated, usually very low (1-2), although it occasionally goes to 3-4 or a bit
higher. Since the patch was put on I haven't had any tumor-fever, but I
have continued to have night sweats. I've also added very distracting
itching to that, which resulted in sores on my feet, hands, and legs.
We're trying to control that with benadryl and/or
Zyrtec.
5. The only downside of the new
regimen is that one of the other patients on Tuesday was a woman with a very
abrasive sense of humor and an insistence that she have control of all
conversations in the room, whether she was involved or not. It's really
frustrating to see my faults in other people. In order to avoid responding
in kind, I slept most of the day yesterday. Mmmm.
Another disappointing event
yesterday was that the x-ray showed 4 tumors in my left lung (the good one) that
were about the size of a quarter each. This may explain some of my
breathing problems. So, at this time, I have active tumor in my left lung,
around my stomach, something causing severe (manageable) pain in my abdomen, and
we don't know what's going on in the original
tumor.
I've left out a few things, I'm
sure, such as coughing leading to short blackouts, dietary restrictions, and
weight loss. This sometimes has made the "positive attitude" something
that I pick up from others rather haul from deep within myself. However,
I've started treatment. If I improve at all, that's a good
thing.
Family
visitors
We've had visitors from both
sides of my family this week: My sister Kathy, my sister Heather and most
of her family, Viva's parents (still here! yay!) and her sister Katie with her
family. We have 7 more coming in soon to stay through the weekend.
It's nice to see them all again. They've all been helpful, and no
one complains about the lump in the living room recliner chair. Not when
they're around me, anyway.
A
song from my nephew Gabriel
We start
them young on the humor ...
On the
1st day of Christmas my true love gave to me a poodle in a dog
house.
On the 2nd day of Christmas my true
love gave to me two golden retrievers.
On the
3rd day of Christmas my true love gave to me three German
shepherds.
On the 4th day of Christmas my
true love gave to me four Australian
shepherds.
On the 5th day of Christmas my
true love gave to me five Chihuahuas.
On the
6th day of Christmas my true love gave to me six wolf
hounds.
On the 7th day of Christmas my true
love gave to me seven sheepdogs.
On the 8th
day of Christmas my true love gave to me eight
afghans.
On the 9th day of Christmas my true
love gave to me nine Labrador retrievers.
On
the 10th day of Christmas my true love gave to me ten blood
hounds.
On the 11th day of Christmas my true
love gave to me eleven beanies mountain
dogs.
On the 12th day of Christmas my true
love gave to me a cat.
Quiz
question: How many dogs are there in
all?
A poem from
Kayla
Kayla wrote a poem for me just
after Christmas; I've included it below. Some of the references need a bit
of explanation
- I spoke French only (mostly)
to Kayla from the time she was 1 until 5 years old. "Ma petite" (my little
girl) has been her nickname since then to this
day,
- When the kids were in grade school I
would tell them Bible stories. I didn't just read them, I told them, made
funny faces in the process, and filled in some missing details so that they'd
actually hear and remember the story. The donkey reference below is one of
those stories. They still like me to tell stories from time to
time.
- Roscoe is a fictional pig about whom
I made up stories for the kids: one about his brief escape from the pig pen, one
about hunting for truffles, one about a trip on the space shuttle to see if he
could find truffles in zero gravity, and one where he ran a restaurant on the
international space station. We'd always had the idea of turning these
stories into a children's book, but that never came to
fruition.
- the "monster" reference is to the
book, "The Monster at the End of this Book," which I would read in character in
Grover's voice when I was younger. (Couldn't do it so well after about
38-40 years old). It's our favorite Sesame Street book of
all.
- the nose comment: For whatever reason
my nose seems more sensitive to smells than most. When I get a yummy thing
for supper, I often stop to sniff it, not realizing what I'm doing. Kayla
and Adam always laugh at it.
- fiddlings:
Kayla now plays cello and piano, but when she and Adam were younger I taught
them both violin lessons.
There, with
that dictionary, you are ready to
read:
Daddy
By
Kayla
Hodel
12/26/2008
I
dreamt last night that I was young
Little
enough to crawl between you knees
I was so
excited to find you smiling down at me.
Just
to know that you thought I was
Ta Petite,
Your Little
Girl
[prechorus]
It's
1 am and I don't know
How much longer before
I'll sleep
But Daddy, of Daddy
please
[chorus]
Tell
me again 'bout how a donkey
Taught a man to
honor God
Or sing to me again
about
The steps it takes to
follow
All my
days.
And is that Roscoe in the
sky
Sniffing treasures up in
space?
And if you reach the end of your
song,
Is there a monster there to make me
laugh?
I slept too late, I grew
so fast
But my Daddy, he held on
tight
I loved it all - the laughs, the
cries,
The "momma" look I'd practice with my
eyes
When you'd tell a joke that gotten so
old
No considerate person would let it
told.
But Daddy, oh Daddy
please-
[chorus]
But
Daddy, I love you, I love all your crazy
smiles
I love you for your nose's
appreciation of food
I love you for your
teaching and your playful fiddlings
You've
taught me more than you'll ever know.
What
can I give in
return?
[bridge]
Do
I get my Gonzo at the end of the book?
The
one who can do voices and crazy looks?
Do I
get to keep you, my daddy?
A child is a gift,
but I think God regifted-
Because when you
got older he gave you to me.
Posted: Wed - December 31, 2008 at 10:28 PM
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