In the universe of chemotherapy, everyone's experience is different. These stories will reflect all of the different protocols using chemotherapy. Maybe you'll recognize some of your experience with chemo, in theirs.
Taking chemo drugs "...for the rest of my life."
Chemotherapy, in a general sense, refers to treatment of any disease with chemicals. In its popular use, chemo is associated with treatment for cancer. People with other conditions for which chemotherapy is life-saving, all but fall through the cracks in discussions involving chemo protocol and its consequences. Ray would be the first to tell you he doesn't handle things medical well. Not anyone else's health issues, definitely not his own. In the full flower of his life -- only 47 and at the top of his game, he found himself staring death in the face as though he rounded a corner and walked smack into it.
"My mother walked out of the hospital room where my father was dying," says Ray. "She sat down on a bench, had a heart attack and she died. I remember standing in that hospital hallway, with the mother or all headaches. My sister-in-law's a doctor. I asked her for an aspirin, she says, ‘You don't look so good, I'm taking your blood pressure first.
"The next thing I know, I'm being admitted to the same hospital where my parents just died. They did some tests and my sister-in-law comes into my room and tells me I'm in kidney failure. I say, "Yeah, right.' She says, "I'm not kidding around, Ray. You're in serious trouble.'"
Looking back from the distance of 12 years, Ray realizes now that the years of intermittent headaches and gradually diminishing energy were signs of the high blood pressure that destroyed his kidneys. But at the time, he was to no degree ready for what was to come.
"I must have passed out while they were shoving me through one of those machines, because when I woke up, my wife was leaning over me. She said, ‘You need a new kidney, and I'm giving you one of mine.'"
Ray gave himself over to the motif of tests and treatments prescribed by his medical advisors, but if he was afraid, it didn't register. All he remembers now is how "pissed off" he was. He knew he was lucky; he was surrounded with love and support, he had insurance - and most importantly, his wife offered a kidney and it was a match. But from the very beginning, he couldn't stop himself from fighting with everybody. Both his body and his environment were out of his control, and he couldn't accept that. Not even the threat of death could make him willingly get with the program.
"Before I could have the operation, even with a donor, they put me on dialysis right away." He looks angry just thinking about it. "It screwed up my life. I had a job, I had to keep taking naps in the men's rest room …and I kept getting infections from …y'know, I still don't know why. Maybe those technicians weren't as clean as they were supposed to be. There was this one nurse… Every one of her patients got some kind of infection. She was the Typhoid Mary of the dialysis facility."
Ray's wife could change his diet at home, but they both knew he wasn't eating healthy when he was at work, grabbing fast food to eat at his desk while he wrote his stories. He admits she had to strongarm him into following any of the doctors' orders or recommendations.
"I didn't want to die, I just wanted life on my terms, and that wasn't possible anymore," he admits now.
When the transplant operation succeeded and yet the kidney itself failed, a colleague at the newspaper where he works stepped up with a kidney to replace the one destroyed by the wrong chemo protocol. Between operations, Ray was tied to dialysis three times a week. Some people tolerate the process better than others, and he wasn't one of the fortunate ones.
"There were times..." He stops, thinks, continues slowly, "If I wasn't Catholic and in and fear of committing my soul to hell, I would have committed suicide. I know what a coward I was, I was just so low I didn't care."
In the end, Ray's new kidney ‘took', and the immediate need to focus on staying alive gradually diminished. Now began the process of integrating chemotherapy into his
hectic schedule that, to the continual frustration of his medical team, he resumed at the same pace as before he was stricken.
He had reason to show a lack of confidence in his doctors, since the first round of chemo drugs they prescribed ultimately destroyed the perfectly good organ his wife had given him. Ray is black, and so the protocol designed for him – for blacks - was skewed to the fact that statistics show people of African descent generally need stronger drug dosages to prevent organ rejection. The problem was, Ray is a lot of other things beside black. He may have looked black, but in his racial profile, his African heritage was a smaller percentage of the mix than the doctors realized. By the time they caught the mistake, he was in kidney failure again. At first, the likelihood that he would find another donor didn't look promising. Perhaps many people would have been toppled by fear at this point, but he was just angrier than before. Being tied to that dialysis machine yet again, experiencing the fatigue that followed every treatment, caused his fears to take a back seat.
"It was amazing, the way people came forward offering me a kidney. My wife was happy, but all the volunteers were women. I said if I had to wait for a man to volunteer, I'd be dead." He laughs. "There was nothing she could say to that."
Ray's ability to tolerate his chemo improved over time drugs , but in the beginning the same drugs that were saving his life made him feel "crappy" all the time. His hair thinned, he was weak, his digestive problems never diminished, his hands shook.
Since his second kidney transplant 6 years ago, the medical team has periodically made adjustments in both his drugs and their dosages. Ray being Ray, he hardly seems to notice.
Today, it's still about control. "Hospitals are like jails to me," he says. To stay out of them, he grudgingly but willingly takes handfuls of chemotherapy drugs every day of his life, knowing if he misses a dose, he risks the very real and immediate consequence of organ rejection. And the drugs must be ingested at specific intervals.
"You can't make your own schedule; you're on the only schedule there is, if you want to live," says Ray. "There's little margin for flex-time. For a control freak like me, this is the hard part."
Not all chemo is infused. Ray's chemo comes in pill form And like most chemo, they don't just do what you want them to. Ray has resigned himself to his foreseeable future, but he still chafes under the terms.
"The body is like a car," he says, "It's all about changing parts and liquid maintenance. Like a car, you change the brake pads, replace the oil, repair it to keep it going. If you don't, the car dies. The drugs keep me going, otherwise I die. It may not be the optimum scenario, but it sure beats being dead."
In any case, slowing down just isn't in the cards, the way he plays them. When he drove from D.C. to Tarrytown, N.Y. recently for a story, he realized once he got there he had forgotten his meds. He drove all the way back to get them, then back to Tarrytown. He said, "It's the price I pay to stay alive."
Ray's side effects from the chemotherapy drugs included thinning hair, a general weakness, chronic diarrhea, sensitivity to light, and shaking hands. Only the diarrhea required treatment. All of the symptoms have disappeared except for the light sensitivity (greatly diminished) and the occasional gastro-intestinal episode .
The pace Ray keeps, flying around the world non-stop to write his stories and columns, chemo drugs always at his side, is his way of controlling the situation. This makes him happy. Control.
"I'm as pretty as I used to be, just a little grayer," he grins. "And by God's grace, I'm still here. I've got the best job in the world, I love my wife and kids, I'm a happy guy. I never think ‘what if...'. There's no point, it is what it is."