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.