As you step on to the roller
coaster, please fasten your seat belts, hold onto the
railing with both hands, keep your head gear on at all
times, because this is a unique ride. Screaming is
ok, and remember, that you won’t be back for six
weeks. Have a good trip.
Abi and I went to
Cleveland last Monday. I went expecting they would
recommend surgery. So it was frustrating to have the
meeting with the surgeon be the last appointment of the
day. The chemo doctor informed us that my 1p
chromosome was intact, which makes the tumor is less
sensitive to both chemo and radiation. The tumor
is growing fast enough that he recommended low dose
chemo and radiation concurrently. The
radiation doctor said his job would be easier with
surgery because he could focus on the margins of the
tumor rather than the whole mass.
Abi pointed out that
there are two lesions not just
one. The second lesion first showed up last month
on the MRI and was bigger on this month’s MRI.
The doctor said he would treat both lesions at the same
time, but there is a risk of increasing all my current
deficits: left side weakness, seizures and
cognitive deficits. The tumor is growing fast enough,
that the benefits outweigh the risks.
The oncologist reiterated
all the above, telling us that this tumor type is less
sensitive by about half, but that of course it could
still be treated.
At the end of the day, at
3:00pm, Abi and I were really starting to drag and
that’s when we met with the surgeon. He said
there are two lesions, and removing the main one would
be a “chip shot.” Abi and I just looked at
him. Then he explained that it would be very easy
to remove. Clearly he plays a lot of golf.
But, then he said the second lesion changes the whole
story. That it would not be easy to remove at all;
it is right over the motor cortex, right about the left
arm. He thinks doing any surgery would just delay
needed treatment by at least two weeks. If I got
another infection, it would delay it even longer.
So, his recommendation, in the end, was the same as the
chemo doctor’s in the beginning, chemo plus radiation.
I had planned to go back
to Cleveland yesterday (Thursday) to get a PET scan, MRI,
and a radiation mask made. On Friday the plan was
to get a tattoo and a CT scan to test the mask. However,
Wednesday I developed a low grade fever, so all this
will have to be done next week, and start the treatments
the day after Memorial Day.
Deep breath…
I was telling Abi while
we were at the hospital that I sometimes have these
flashes that when I go by people laughing and having a
good time that my brain tumor will jump out of my head
and go into their heads. She suggested that maybe
that was part of still being angry about the tumor.
Another time while I was there I watched someone get up
from the table and take his tray over and said, oh yeah,
that’s how you move. I remember that.
When we got home we
talked to the kids about what we learned. Hana was
very emotional, upset and clingy. Zac was kind of
holding back. I can only remember one question he
asked. He asked if I would have another three year
period where the tumor would not affect me. I said
that the doctors didn’t give me much hope.
Immediately, Hana went to her room and found a hope a
coin that Abi had given her. The coin said if you
ever need hope just hold it. Zac went and got a
Chinese good luck charm he had just purchased at an art
exhibit, and put it on my bed post. When Abi asked
if it worked, he said well it helped me get my homework
done.
I am truly blessed by an
amazing family.
When I was in Cleveland I
was thinking how much more of my self do I have to give
up to this cancer. When I mentioned to this Abi
she said, if you have to ask that question, then clearly
you haven’t completely surrendered your attempt to
control.
The Cleveland Clinic has
a free place to stay called Hope Lodge, which is where
I’ll stay five days a week for the six weeks of
radiation therapy. It is required that someone
stay with me at all times. We’re still working
on the details.
I hope you are well.
With love, hope, and
blessings,
Dan
http://katzstein.com
http://life.katzstein.com