Last
Saturday, my 13-year-old son Zachary, had his Bar Mitzvah in
Yellow Springs. More than 140 family members and
friends came to Rockford Chapel to honor Zachary’s Jewish
coming of Age. It was a very successful and
beautiful ceremony. Afterwards, we had a luncheon at
the Antioch Inn and then in the evening, many people joined
us for a light dinner and games. The kids played a
‘Magic: The Gathering” card tournament. In
the end, Zachary and his best friend, Alex Turner, were the
two finalists. After Zachary won the first game, they
chose to call it a draw and split the prize.
The
Bar Mitzvah was a significant life cycle event and was very
successful, especially since Abi has been planning it for
more than a year, bringing both of our families, the Jewish
community and our friends together.
I
was extremely nervous when I spoke about Zachary to the
participants. I told them that I was very honored that
he had chosen us to be his parents and that we had many
common traits but that he was also his own person and that I
valued our differences. While I was speaking, my
hands were shaking and I couldn’t hold my paper very well.
At first, Zachary tried to steady my hand. Then he
tried to hold the paper for me, and then finally he put the
paper down on the table in front of me; each time supporting
me more and more - making me feel comfortable. I
said I was honored to be his father.
I
mentioned that it was almost 8 years to the day that I had
been diagnosed with cancer. I had many other thoughts
about how things constantly change and how as much as I want
to keep things constant, I really don’t have that control.
But at the time, my mind went blank, and all I could say was
that it had been hard for him and that I really appreciated
his love and support.
Scary
Time
In
mid-February, just after my last update, my left ankle
started to shake or seize in a 30-second motor seizure;
sometimes 4 times an hour. But they were well
controlled and passed predictably. During the
night, Abi would joke that we had a massage bed.
“Tumor
growth” was my first thought.
The
seizures moved from my ankle up to my thigh and then a
little higher, following what I remembered happened when the
tumor was growing in October.
I
started taking steroids thinking that maybe there was some
swelling that was causing pressure on the motor cortex, but
that did not change the symptoms. The strength in my
legs was OK, but I started to use my cane again to walk
around because I was less and less able to control my ankle,
so I was a fall risk. Also when a seizure came, I had
to stop and stand in one place till it passed. I got
an MRI and went to the Cleveland Clinic to talk to them but
again, we did not have all the information we needed because
we did not have the previous MRI from my last Boston
surgery. So all we could do was talk about
possibilities. If it was re-growth, they would
want to use radiation since I was still on IV antibiotics
for the infection. If not, wait and see before acting.
In
any case, they were concerned about the frequency of my
seizures and wanted to admit me right away for observation
and drug adjustment to see if I really was having seizures
and if so could they be stopped.
We
said thank you, but no thanks and went home.
I
sent the MRI’s to Boston and they said “Dan,
Dr Black just reviewed the scans and says they look very
good, with only surgical changes. Other than healing,
he cannot account for the increase in seizures. “
Over
the last week, the seizures have reduced to 4 times a day.
Now it’s only in my shoulder in the morning. I do
not know what changed but perhaps my stress level has
reduced quite a bit.
Cleveland
would like for me to get another MRI four weeks after I
finish the antibiotics. They confirmed that they
definitely want to do chemo because my pathology is so
serious.
I
have an appointment with the local infectious diseases
doctor on Wednesday. I hope that I will stop the IV
antibiotics at that time. Reducing these medicines
should help increase my stamina and decrease or maybe
eliminate the seizures I still have. There is still a
question as to whether I’ll need to take oral antibiotics
or not because of the metal plate with which they replaced
the bone.
Continued
Wondrous Support and Thanks
The
fifth and sixth grade of our local elementary school was
moved by our continuing struggle and chose to take action to
make a difference.
http://www.ysnews.com/stories/2003/march/030603_pie.html
(see story)
They
set up a ‘pie-in-your-face’ contest where the students
had a 5 cent raffle fundraiser to pie the president and
vice-president of the Student Council. They raised $90
for us. I was very moved by this gesture of
generosity and community support. I showed the letter
to every person who came into my house.
Volunteers
continue to come and help us from 3.30-7pm after Bill leaves
and before Abi returns from work. They also give our
kids rides to the places they need to go. These
volunteers are coordinated by the Senior Citizen’s Center
one month at a time, making me feel well supported.
This
month I move Long-Term Disability from YSI because I’ve
been gone 6 months. That means two things in the
short-term, 1) 10% less pay, and 2) applying for Federal
Disability. Less money is always a strain but
I’ll take that up in another update. The SCC has
already helped me with the SSDI.
One
of the volunteers is Al Denman, my former philosophy
professor at Antioch College. We’re reading Budda:
Plain and Simple. This book was recommended
by my mother-in-law many months ago. It is
exciting to read the teachings of Budda for several reasons.
One is that as we read some of the concepts, they make sense
to me on my spiritual journey over the past 8 years.
Also, it is very stimulating to explore the ideas with Al
because of his breadth of experience. It can take over
10 minutes to read one page because we’ll discuss the
concepts that are expressed on that page, and as he said
just yesterday “I’m tempted to get this book and read
ahead but I’m having so much fun discovering every word
and every concept with you, that even though it will take us
a very long time to get through this book, I’m probably
just wait.”
What’s
Next?
As
mentioned before, first is to get off the IV antibiotics.
Also, I’m going to start outpatient rehabilitation very
soon. The question of what/when to do about
chemo is still unanswered. I also want to
rationalize my seizure medications to try to see if I can
reduce any of them.
In
the meantime, I’m getting stronger and am thinking about
maybe teaching a visual literacy class at the Antioch
School.
----------------------
Some
have asked me how often I write updates.
Usually, they are event driven so there is no specific time
between each update, but lately it’s been every two or
three weeks.
That’s
it for today.
Thank
you for your continued help, love, support and hope,
Dan
http://katzstein.com
http://life.katzstein.com