I actually wrote this two weeks ago but am so caught up in trying to live that I never got a chance to post it.
As I trudge through my next cycle between scans, I’m intensely
vigilant for new symptoms, real and imagined. Of course, as the middle of
September rolls around, I’m on high alert to be insulted by a barrage of pink.
I passed a student with a t-shirt emblazoned in pink with “Volley for the cure”
punching through my polite passageway negotiation. I stiffened in rage. Not
only did that fundraiser not go for a cure but it diverted funds that might
have been better spent for a cure.
Classes started in the middle of August so I am again
consumed by work and hospital visits. My current regimen of Gemzar and
Carboplatin is on a schedule of two weeks on and one off. The first cycle
started off well. My blood work was fine and I had the first dose. However,
when I went back a week later for the second dose, my WBC count was so low that
the infusion center had to call the oncologist before they could administer the
chemo. I was sent home feeling like I really had been hit by that proverbial
bus. The bouts of nausea and vomiting at unexpected times are a constant
reminder that I am caught in the outer edges of life, hovering in that no man’s
land between living and dying.
Two weeks later, I again presented myself of the nurse visit
and blood work. This time, I was not so lucky. The oncologist said no chemo and
I was told to go home and come back in a week. This did not work for me. I
marched up to her rooms and saw my favorite nurse and asked her what could be
done. She talked it over with the oncologist and they settled on a daily dose
of neupogen for seven days.
That is now my life. Chemo and neupogen injections mean
hospital visits 12 days out of 14 and then seven off.
I’m now on my 12th and 13th different
drugs to combat this disease. Some have worked for years and some have not
worked at all. The last three scans have showed progression as three sets of
treatment have failed. For over a decade, I have lived with side effects that
mimic medieval torture.
I have known vomiting so bad that I lay on the bathroom
floor all night because there was no rest in between episodes. I have lost all my
hair. Nausea is as part of life as endlessly shedding toenails. I have lost
every nail on my fingers and toes and my toenails so many times, there is
rarely a period when I have all of them attached. I have had my skin on hands peel
off in shreds. I have had giant blisters randomly appear on my feet that caused
me to scream in agony when I took my shoes off. I have known what it like to
crawl on my hands and knees to the bathroom because I could not walk. I have
had diarrhea that caused me to lose 10% of my body weight – so that a scant 95ibs
hung on my 5ft 6in frame. I have known joint and muscle pain that crippled my
legs so I could barely walk. I have experienced fatigue that required me to
leave an extra hour just to shower and rest and get dressed and rest. I have
been so dehydrated that I fainted on the street. I have pins and needles in my
hands and feet all the time. My nose bleeds at random intervals. I have felt
broken so many times that I thought I could not go on.
We do not need more treatments. We need better treatments.
We need a cure.
