Abi is not going to work this year
so she can stay home and take care of me and the kids.
I’ve been pretty mentally paralyzed since the trip
to New Jersey both from the physical trip and the
reality of the experience. Mentally, I’m still
paralyzed. I just don’t know what to do next,
“should I stay or should I go now.” When we
were in Cleveland, just before going to New Jersey,
the oncologist agreed with us that the chemo wasn’t
working anymore and they had nothing else to offer the
fight the cancer—months to live. If that’s
true how do I want to be spending my time? What
if it’s days? What if it’s weeks? What
if it’s one day? These questions haunt me.
They haunt me because I have not gotten to acceptance.
And Abi is a good reminder that the time spent on
potential ideas of what could happen are taking away
from focusing on the time I have now. I
understand this intellectually. I also
understand that my illness is terminal and I do not
see a cure. That does not stop me from wallowing
in grief. This wallowing is zapping my energy.
I woke up early this morning and realized that I
hadn’t done anything with the video or computer for
a week. These are things that I enjoy a lot but
now they take up so much energy. Another
annoying thing is that my confusion is has gotten
worse. I don’t even attempt to keep track of
the day of the week anymore. The other day I
said, “Oh, it’s a cheap night at the theater, it
must be Tuesday”…. Hana said, “No, it’s
Sunday”.
Hospice
Hospice means many things to
many people. It doesn’t mean that you go there
to stay; they offer many different services in the
home. As my disabilities increase the question
is when to ask for further assistance. This is a
very scary question because to me. It’s
accepting that I’m sick enough to need end of life
care. “Because aren’t people in Hospice the
people who are dying?” Now I know better –
that they offer many services to help keep people well
and I know people who have graduated from Hospice.
But to sign up for Hospice service is to admit—yes,
I am dying.
When
is enough enough?
This is not a medical question;
this is a spiritual/personal question. This is
not about giving up but knowing in my heart when, but
I’m not there right now. I have come to some
guidelines though, for example—I don’t want
anymore surgery even if it was an option but it’s
not. I want to avoid things that would hurt me
physically
Flying East was difficult
because my dad was not there and I saw many people who
I may never see again. So it was a surreal
experience in that sense. I may never fly again.
I may never see this person again, etc, etc. I
just don’t know. For many months I’ve been
very aware of dates like my handicap sticker expires
in 2008 and I thought the chances of living that long
were pretty small.
My next plan is to go see Keith
Block who has an innovative approach to nutrition in
cancer related issues to see what he has to say about
my case. I don’t know what to think of this
visit. Again I don’t know whether to hope for
a cure or for help to extend my life or for help with
the acceptance process. But I have to say that I
feel really tired. Whenever Abi or I talk to
Hospice or a Doctor about my condition they always ask
how many hours I spend a day in bed and when they hear
that I am only up (out of bed) four or five hours a
day they always give me a poorer prognosis than when
they first saw me.
So I keep searching for peace
and I’ve talked to several people and the consensus
seems to be that there is no secret formula, that it
is “an inside job.”
Videos
This is a video that Hana made
during the summer that I never got to share with you.
I want to share this with you now. It’s called
“The Spy Camp”.
http://treehouse.umsl.edu/~dan/video/spy.mov
Peace be with you,
Dan
http://katzstein.com
http://life.katzstein.com