Date sent: Thur, 4 Aug 1999 23:05:45 -0500
Subject: The Second Time Around
My surgery date is set for 6 am on 8/11/1999.
Wait - let me start from the top. In the end of June I met with my surgeon, Dr.
Goodman, to review my annual MRI brain scan. The last three years' visits have been 'looks
good, see you next year.' This time, however, the 'scar tissue' had grown by 2 mm from
1998. He was concerned and took the report and MRIs to his Tumor Board. A few days later
came the call - a recommendation that I have another craniotomy to remove most of the
tissue and to accurately type it so they can give me the best chemo treatment possible.
No. No. Not again.
Then - well, if this is what needs to be done, we should just do it and get it over
with. Of course the entire concept turned our plans on their ear. Abi was accepted and
planning to go to Medical School in September. The kids and I were going to stay in Yellow
Springs and she was going to commute to Athens, OH. Now she has deferred a year.
At first I was very cool about the surgery. Hey - I've done it before. I know the
drill. Last time it was the worst possible nightmare I could imagine. This time I can
remember every part and it all worked out.
Now that I have a date, though, I'm not so cocky. This surgery is a major assault to my
body. It takes months to fully recover from it. And the chemo treatment will probably
start about 4 weeks after surgery (give or take).
Chemo is the ugly monster. I've never had it. I've heard a lot of not good stories.
Everyone says it's "individual." But no one says - hey we're just going to kill
your white blood cells and your red blood cell producing bone marrow for a few
days….you don't mind…do you? Your hair? Yeh, you might loose your hair all over
your body. You might get pretty tired after each treatment. Watch out for germs, since
your white blood cells are pretty low right now. And - oh by the way, you'll probably be
sterile after the treatment.
Chemo overwhelms me. Stupid sayings keep coming up in my head.."you've got to be
cruel to be kind"…."no paid no gain"….
Some parts of life just suck.
One of the more painful things is that I am feeling better than I have in several
years. I am participating in life more and working with my seizures. Why do I need to get
sick to be well?
Another thing that bugs me about this entire event is that because the tissue is so
close to my motor cortex, the surgery probably will not be able to remove all of the
tumor. So the goal is to get a biopsy and remove as much as is safely possible. So, I'm
getting my head fully cut open and they won't even be able to get all the tumor out! Talk
about paradox.
I've been waiting 3 weeks for OSU to find a surgery date. While waiting, I was told
about an article in Scientific American about a new technology in Boston that allows MRI
imaging to be used during the surgery. This allows them to do much more accurate
extractions. I contacted Dr. Peter Black and sent him my MRI yesterday films to see if he
thought my case would benefit from their techniques.
That same day OSU gave me a surgery date. I called Sharon, Dr. Goodman's assistant, and
asked if I could put off the date for a week, and she said he was booked through
mid-September. I don't fully believe that, but basically if I don't take this time, I am
back in the queue.
Dr. Black's Tumor Board meets on Fridays - so now I am burning the candle on both ends.
However, I don't expect Boston to be a real possibility just because the logistics seem
daunting and they only do 2 patients a week with this new technology (though I don't even
know that would be his recommendation).
Finally, I wanted to make absolutely sure there was no other scanning technology I
could use to avoid the surgery completely such as PET. Tonight I talked to a brain tumor
oncologist separate from OSU and he confirmed that in my case PET is not much help. He
said that my MRIs sound good because the growth is slow and they don't "enhance"
with contrast. Still he recommends getting a real tissue sample. His only question was
whether the entire tumor could be removed. He also said if my tumor type has not changed,
that type responds very well to chemo.
Oh and the insurance company said they won't pay for the surgery because OSU is out of
my HMO network (their automatic first response). So, YSI HR department is going to have to
contact them directly. Since I had my surgery there 4 years ago and a continuing
relationship, I'm not expecting that to be a problem.
Other things have changed as well. Last time YSI kept me on as a full-time employee.
This time I am working through the Short-term Disability system. This means getting
everyone's approval, and a 30% salary loss from the company that we'll have to make up in
other ways.
Are you getting overwhelmed yet?
I sure as hell am.
And yet, in the 3 weeks we've been waiting for OSU to give a surgery date, Abi and I
have had some special time. Because we knew the surgery could be 'any week now,' we
wouldn't too busy, and had a gift of time.
This weekend there is a Rabbi coming from Philly to give a service on - among other
things - religion for non-believers. Abi said I was supposed to go to that. At the time I
said, "I won't be around." I guess I'm going.
So what the plan? Surgery next Wednesday.
The only thing that would stop me is if my HMO says no or Dr. Black says "we could
do a much better job."
So that is a blow by blow. I'll let you what happens next.
Thank you for your love, kindness and warm thoughts,
Dan
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