Here are more snippets from the blog I began nearly four years ago.
May 9, 2012. "New trees are planted everywhere (at Ground Zero), but one is actually from the original
site. It is called the Survivor Tree. Reduced to an eight foot tall
stump on September 11, 2002, it was rescued and brought to another site
and put on life support. It slowly emerged from its coma and sprouted
new growth. One more trauma to the tree occurred before it was safely
returned to its original site: A hurricane uprooted it last summer. They
took the tree and planted it in the lovely memorial park. It now stands
30 feet tall and is in full leaf.
As a leukemia survivor, I identify with this tree. May it live a long happy life."
July 7, 2012. "I
went to bed early last night after a very pleasant day which included
seeing Harry at his new job at Merriewold Country Club. We took him and
his co-worker/friend Matt to dinner in Monticello and were home by
some reason I became teary and sad. I started reliving my life since
that awful day in 2006 when I was told I had leukemia. I focused on
every hospitalization, every chemotherapy, every set-back, every small
victory and all the anxiety that coursed through my body.
I fell asleep. Who wants to relive six years of illness? No one. But
sometimes the horror pries itself into consciousness and and snuffs out
the good things that have happened, are happening and are soon to
August 13, 2012. "I thought my life was ending, again. The small mass on my nipple turned
out to be leukemia cutis, which is an isolated pocket that manages to
fool the anti-leukemia T-cells and find sanctuary at skin level. These
extramadullary sites can appear anywhere in the body, so I had a PET
scan to check for other hideaways. I also had my 18th bone marrow
biopsy, which hurt like hell. I got the news of the leukemia cutis in the recovery area after my
cataract surgery. Dr. Giralt called me on my cell with the news. I was
devastated. Thankfully, my friend Dianne was picking me up to take me
home, so she helped make me feel a little better. I met
with the radiation oncologist this morning to find out about targeted
therapy, Dr. Giralt called to say the marrow was clean. Dr. Giralt also mentioned a
series of shots I'll receive 5 shots in my thigh on, one a day for 5
days each month. Onward."
August 28, 2012. "I went to the radiation suite, changed into my backwards robe sized for
a 200-lb. person, and waited my turn. When they called me in and
started setting me up on the table, Billie Holiday sang softly in the
background. Since the position I have to get into is fairly
uncomfortable, it was nice to hear a familiar voice."
August 30, 2012. "This morning I felt the full meaning of the "plog." As I lay stretched
out on the bed, feeling sad, I was at once bogged, fogged, flogged and
nogged. As energy leaked out of me, I saw myself spending the day
drifting in and out of sleep and not caring much about what happened."
October 10, 2012. "We went out for Chinese food yesterday with our nephew Mark who lives in Maryland. This was what my fortune cookie said:
"You could prosper in the field of medical research."
It got me thinking. Maybe I could pre-donate my body to science, collect
the money now, knowing I would be gleaned for side effects relating to
leukemia and graft versus host disease when I die. If they wanted to,
they could take non-essential bits right now: skin scrapings, organ
biopsies, scans, and the like. Heck, they may have developed the
technology for a Fantastic Voyage exploration using tiny robots.
I doubt this would be legal or considered ethical. Why shouldn't I make
money from my misery? Perhaps pay off medical debt? I'd be less a drag
on my fellow Americans who're now paying me disability."
January 30, 2013. "Who knows whether Bag Balm will be the miracle I want it to be. I'll use
it for a week or so and see. At $10 for 10 oz. it's relatively cheap,
and if it works, I can probably order the cow size."
February 18, 2013." This is what withdrawal feels like. On February 1, I tapered from 20 mg of prednisone to 15. I've been on
the higher dose for over 2 years. I know I just have to stick with it
and it will be alright. I have phantom pains, nausea, and find myself
taking an ativan when things are particularly bleak. And oh yeah, I like
to sleep. On Saturday, I napped for 3 hours during the afternoon. And I
had company!!! It was family, but still. I have to drag myself out of
bed in the morning because I don't want to remain a slug and not have to
be a rational human being."
April 19, 2013. "I had a dream last night in which a huge German shepherd knocked me down
and took my hand into his mouth. I just laid there, as still as I could
be. It was like a test, and how I reacted would determine my fate. The
fallout from my transplants, most notably the graft vs. host disease, has
been challenging. Then there's been the destruction of my tear glands,
the loss of 2 teeth, 2 melanomas, cataracts on both eyes. I've somehow
weathered these with what I like to think is grace. I didn't moan too
much and tried to make light of my infirmities. After all, I know
leukemia survivors who have been called to cope with similar issues. And
then there are those who didn't survive.
I want to thank a dear friend I spoke to today who gave me some useful
and sensible advice. Maybe he was that German shepherd trying to direct
me to a better place, back to the fearless, confident person I used to