As
we have known since January, my tumor
is regrowing.
I had a short break where the Temodar
seemed to be making some difference.
But, even the Temodar seems to be
failing now. I got an MRI last
week showing a new mass deep in the white
matter of the parietal
lobe. I have known for some
time that I have been getting worse
and worse. I asked Abi
“What’s different today than
yesterday?” And she said
“Now we have radiological
confirmation that the tumor is
regrowing.” And the kicker is,
that there is no additional treatment
for this type of tumor – in either
Western or Eastern medicine.
Well, ok, there are treatments I could
try, with known severe side effects,
and very minimal effectiveness.
Maybe adding 6 or 9 months to my life,
if they work.
I
knew that when Dr. Stevens started to
talk about melatonin as one of the
treatment options, that I didn’t
have many options left. We will
go to Cleveland
on Tuesday and talk to them about the
next steps.
I
am mentally and emotionally reeling
from these latest, inevitable
developments. There was never a
question that I would get here
eventually – where I had no obvious
additional options. Now
that my body is not responding to the
Temodar and my condition is worsening
and there doesn’t seem to be any
additional options, I can’t hide
from facing this eventuality… and it
hurts. Observers say that I have
put up “a good fight.”
That’s a small consolation.
And, from here I really don’t know
what will be next. Will my
decline be quick or slow? How
much will I be able to engage in life
from here on? Again, what
changed from yesterday to today?
I
am having more headaches, so I will
probably have to increase my decadron
(steroid). I was down to 1mg/day
and had lost 15 lbs. My speech was
better etc. But I’; need to go
up on the steroid to for conform and
balance. I have fallen four
times in the last 4 weeks. I’m
now carry the cane in the house –
just in case, and I do catch myself
some times… Our choice of new car
was dictated by my ability to get in
and out of it. My vision has
been directly affected by these
changes, and making it much harder to
use the computer. I am tired
much of the day. I remember
things in funny ways. Abi and I
talked about moving the computer
closer to our bed and rearranging the
room weeks ago – several times
I’ve “remembered that we moved the
computer.” Of course, we have
not. I always feel a little
jolted by these lapses in reality.
When
we return from my dad’s funeral in New
Jersey, Abi starts full time
internship 80 working hrs per week.
And, we have some of my care lined up,
but not all of it.
I
feel like my life and my environment
are a mess. I am feeling very
sorry for myself. I want to feel
stronger. But, having no idea
where that might come from. We
do have a ray of hope. Liz, who
has been around the block with cancer
a couple of times, has adopted us,
saying that helping us is “the most
important work in her life that she
can think of right now.” But
otherwise I think August then
September are going to be two rough
transition months.
I
have been thinking about my dad’s
death and funeral, I thought of
witticisms that I wanted to share with
you to illustrate the kinds of things
he and I would share together.
For example, The Department
of Homeland Security issued a
warning against using Internet
Explorer and suggested using a
different program to access the
internet. This is like the
government suggesting not driving a
Ford. My dad and I could spend
10 minutes talking about this and
about the government warning us not to
use Microsoft products. In the
computer world, this is a very funny
development. Abi suggested
that I share it with him anyway.
I did. But, it just didn’t
feel the same.
And,
I really miss him during this
difficult time.
Abi
and I have been talking about my
living will. Up to now, we have
been relying on our power of attorney,
so that she can make what every
decisions need to be made. But
there are a lot of decisions that need
to be made. One important
decision is whether or not to be
cremated, which is a tradition on my
paternal side. I personally have
an aversion to being buried – taking
up that 6 by 8 foot space for my body,
for all eternity – when my soul has
already left – really bothers me.
And, therefore, my wish is to be
cremated and to have a tree planted
where my ashes are placed.
As Liz said, the marker is for the
people for who are living to remember
you by. It is not the physical
body that is important – it is the
marker that is important.
Abi
asked if there was something I wanted
to do before I die. I like to
write to my kids about how much I love
them and some of my thoughts about
life. But, I don’t get to
that; I just want to tell them how
blessed I feel that choose me to be
their parent.
I
hope this find you well!
Love
Blessings, Hope, Understanding,