When we sent the information to
Boston
, Dr. Black said that chemo and radiation would be ineffective right
now. His suggestion was to
remove as much of the tumor as possible and then treat the rest.
I actually felt better about this
suggestion. I don’t like
having my head cut open and I really don’t like being awake for it,
but it sounds better than a chemo/radiation combination.
I felt good for several days.
It took two weeks to find out they could
schedule the surgery for Dec 10, check-in Dec 9.
Now we have to convince the insurance company that this is the
best place for me to go.
After my last update letter, I got the
sense that some people did not now how to talk to me about what was
going on – like I was already dying.
At that point, I declared to myself, “I am not dying, I choose
life!”
---------------------
Last week we drove to the Cleveland
Clinic for a second option. That
added to my confusion. They
said they would recommend a biopsy to see if the tumor is missing the 1p
chromosome. Half the tumors
are. If it is, they
recommend only chemo, because, in their experience, the chemo is almost
100% effective and would shrink the tumor with minimal addition physical
deficits.
This also reinforced something that
we’d only been thinking about – that the losses I’m getting now
may be permanent brain damage or pressure from swelling.
We really don’t know for sure, but there is a very good chance
the tumor is killing important brain tissue.
Right now, I’ve pretty much lost all
movement in my left foot and ankle, and my left leg is weakening.
When I walk, I have to shorten my stride so I can pull my foot
forward before the toe drags. I move delicately because my foot can
catch on the floor at any time. And
going to
Boston
is two plus weeks away; I don’t know what additional damage will
happen between now and then.
Cleveland
said they could do the biopsy next week.
So what should I do? Call
Dr. Black and ask him what he is thinking.
So I talked to him today and he said that
his team is not convinced a 1p deletion is that important.
So he still recommends surgery.
He also agreed trying steroids, to reduce the swelling) would be
a good idea.
I still believe in
Boston
’s medicine and Dr. Black’s assessment, so that’s my plan.
I hope UHC, the insurance company will agree.
By some strange act of how knows what,
the mother of a friend of ours just had surgery in
Cleveland
and is having complications…and will be going back on Monday.
I’ve had a dark cloud of depression
over me the last few days as I thought about all my options.
Every decision, every surgery is to preserve some function –
not to improve it. We are
talking about saving my physical life by slowly clipping away at its
manifestation.
A good friend that just had another
cancer surgery…she’s had so many treatments she might be losing
track…sent me a note that said, “life is about giving and receive
love.”
I find it more and more important to find
and to define life through spiritual eyes as my physical persona becomes
more ‘hurt.’ I know that
I exist separate from my physical form…my essence ‘is.’
Each person’s essence transcends their physical being, I find.
This is a comfort to me as I move through this journey.
With love and joy and hope,
Dan
http://katzstein.com
http://life.katzstein.com