Now I know I’m pregnant.
My mood swings are quite strong, and my
stretch marks are coming to get me.
This morning when I was
waking up, I realized that yesterday was the 9th
anniversary of my first seizure that started
this journey. I’ve always triumphed in
life by “figuring things out.” That’s
why I like technology so much. There is
always a new problem to solve and often if I
take enough time or talk to enough people - I
can figure it out. But I realized today that I
am very distressed that cancer is different.
There are many theories and I have perused
many ideas, but I still cannot “figure it
out.” And I’m getting discouraged; I feel
like my time is running out.
Since January my ability
to walk without being effected by a
mini-seizure has gone from a ¼ mile per walk
to 2 blocks per walk. At the beginning of
February, I started to have extreme headaches
on a scale of 1 to 10, they were a 7. As
mentioned in my previous update I started
taking more steroids which only helped a
little. I did my normal round of Chemo in the
middle of February which was uneventful. The
chemotherapy seemed to have some
effect on my headaches.
On Monday I had a simple
seizure in the back of my neck and the doctors
recommended increasing my Zonegran by one
pill. The increase has relieved all the
twitching that I had previously experienced
and most of the headaches as well. It
has also left me quite drowsy. Therefore, I
don’t feel much like walking.
I have a follow-up MRI
and visit with the Cleveland clinic in 2
weeks. I still don’t know what is going on.
I don’t know if I’m growing something or
if this is further damage from previous
treatments, but I doubt they’re going to say
anything about a child.
A friend asked me
yesterday if I was depressed. I said “Yes,
especially these last two weeks.” She asked
me if I was doing anything about that. I
mentioned that I am trying to focus on things
that are more interesting than my health but
that I’ve d had difficulty these last two
weeks because it has been right in my face.
I talked to Zachary
about his interests and a little bit about
this dilemma. He suggested that I take
up something completely different than I had
in the past.
He said “you could
fence from a wheelchair.”
I said “Well, you
know, I’m doing video and photography.
“Yeah, but you’ve
been doing those for years.”
“Maybe I could do it
without the wheelchair,” I suggested.
His only concern was that I might be pushed
over by my opponent.
“I guess I would need
a gentle opponent then.”
My friend also asked me,
“Is there anything you have always wanted to
do and have just never done?” Whenever
anyone asks me that question, I always draw a
complete blank. Though learning to drum better
comes to mind now.
One thing that’s
difficult now is I live in a house that’s
teeming with life. Zachary will be fourteen on
Friday. Hana is nine and very energetic.
Shayna, our dog, is 8 months old and lives in
the kitchen and also has a lot of energy. Abi,
works all day long, and that takes a lot of
energy too. I however, am drugged to the hilt
and feel lethargic most of the time. I want to
participate at the energy level as the rest of
my family but can’t.
After 3 weeks of
coordinating volunteers, we finally found
someone, Julia, to be a more permanent
caregiver to help me day to day. This is
starting to help me have a more regular
routine and not wonder what I am going to do,
who’s going to help me in the next day, and
do cleaning, laundry, etc.
Video might be old hat,
but I created a video from the un-birthday
party mentioned in the last update. This was a
fun project. This time I created both a Mac
compatible version (QuickTime) and Windows
compatible version. Zachary is taking a
media arts class in school and that plus my
project inspired him to create his own music
video using Movie Maker that comes with
Windows - linked here Mac
(Quick Time),
Windows.
Zachary will be 14
tomorrow, Abi graduates from medical
school the first week in June, we plan to go
to Disney over Spring Break and Europe just
after graduation, so this is a
big year.
I mentioned in the last
update that I had shown Zachary how to share
files on the internet. He did that for a week
or so, but then said that his conscience had
gotten the better of him, and asked me to take
the program off of his computer. I was
surprised but interested because it’s just a
different culture than I was raised in. I was
proud of him for making his own choice.
Separating
From YSI
Last Tuesday I went to
YSI and signed the official papers stating
that I am terminated as an employee of YSI. It
was simple, clean, and sterile. It had a much
bigger impact on me than I thought it would. I
never thought that I would go back to work for
YSI but somehow this act made it official.
Suddenly I feet more distant from the company
and the people that I worked with even thought
it was only one day later. It’s closing a
chapter in my life. I am retired from YSI.
When a friend heard that I was going to YSI,
he joked, “Oh, are you going to apply for a
job?”
Now that I am on SSDI, I
am officially a retired person. I am
also the “disabled person,” which had
several “advantages.” For example,
the tax penalty for early withdrawal of my
retirement is waved. I’ll continue to
get LTD payments and life insurance from YSI
Insurance for the next 25 years. Etc.
It’s the end of
February, I continue to swim, hold my breath,
and pray, trying to figure things out. Maybe
March will bring a fresh breath of air.
I think that’s it for
now.
With Love, Kindness,
Understanding and Hope,