This is one of several essays from my private cancer journal. It is not intended as anything than a record of my states of mind as I struggled with the disease and the effects of the treatment.
One step forward, two steps back
and into the room
This is not a pleasant essay but I would be dishonest if I recorded my journey any other way.
Leaving the elevator on the 4th floor of the Cincinnati VA hospital, one turns right and then left to enter the oncology/hematology section in the 4 South Wing. Immediately to the right is a room where the door is always open.
I knew what the room was and always avoided looking closely, on my way to reception.
The room is where men (and, I supposed, sometimes a woman) get their chemo therapy. They sit in six oversized, plastic-covered, blue recliners, three on each side of the room, plastic tubes running from their arms and up into bags that drip the solution they hope will give them more time.
I passed the room again yesterday, on my way to get a new blood draw before I saw my oncologist. We wouldn't get the PSA results fast enough for today's meeting but the blood draw last month was enough to tell me we had to go to Plan B. My PSA had soared from 96 to 238 in one month. We agreed that it was probably now at 500 or more. The 238 was enough to take action.
He gave me the options: back on HT (Zoladex and triple-Casodex, as we had discussed last time and that I preferred); chemo or watchful waiting. I was surprised at his suggesting the latter. It was merely because I was still pretty much asymptomatic, he said. True. I tired more easily but I was still pretty much pain-free and no urinary problems. No, I said, let's do the HT again. I had been off the Zoladex for a year and off Casodex for maybe four months, so let's see what the system will do with them. Okay, he said. We'll check it in two months to give it a run. I agreed.
One other thing, he said. He would like me to go on the bisphosphonate Aredia (pamidronate) to curtail any bone loss. Okay, I said. It was probably wise now. It is a two-hour infusion, he said. They do it down the hall. Can you do it this morning?
Down the hall, in one of those blue chairs. My stomach fell.
No, I honestly said, not this morning.
I took a deep breath. Yes, tomorrow's fine, I said.
As I walked out, I glanced into the room where I would be tomorrow and kept walking to the elevator.
The day was bad enough, coming to grips with a soaring PSA, going back on HT and knowing that I was running out of options. But to now have to step into that room where it is a man's last option was more than I really wanted to deal with now. That room might come later so I didn't need to visit it now.
At home, I poured a scotch and sat on the front porch to calm down. No matter how much I think I've grown used to this disease and bad news, it still has an effect on me. At the same time, I've learned that I do recover from it. I'm just getting tired of the blows.
TO THE ROOM
Ruth greeted me on my arrival the next morning, at my appointed time. She is a slender, attractive woman in perhaps her early 40s, with an infectious smile and attitude. She spoke to our support group a few months back on pain management and we had chatted in the hall a few times. She always seemed to know the status of my cancer.
I stood by the open door with a poster giving warning signs for some chemos. Watch for numbness in the fingers or dizziness and notify your doctor. I don't need this now.
She finally pointed me to an empty blue chair in the corner, saying she would right with me.
I sat down and put the computer magazines I brought with me onto my lap. I needed a distraction for a couple of hours and it was a good time to catch up on my reading. Meanwhile, I looked about the room.
Along with another woman who was quieter, Ruth moved between the five men, with that smile and a pleasant remark before coming to me.
"So how are the veins today?" she quipped.
"Not as good as they were two years ago," I answered.
"Every man in here can say that," she replied. It was a fact that I didn't need to be reminded of.
Within a minute, the needle was in a vein on the back of my left wrist. She taped it down and then checked the plastic bag that hung above me. I opened a magazine and tried to relax, but all I could think of was a clinic I had to visit when I was in the 6th grade.
I had been diagnosed with an unusual bone condition in my knees, called Osgood-Schlatter's disease. There was no "treatment" at the time. I was told that I had merely grown too fast and the front of my knee where the thigh muscle connected was fragile. Until the bone filled in, I couldn't kneel, jump, squat, run or play any sports.
Meanwhile, my mother took me to a children's clinic once a month, to check my progress. The waiting area was populated with kids in braces, on crutches and in wheelchairs. Much of it was probably due to polio, which was still a problem in the early 1950s. I would wait in a chair next to her and watch crippled kids moving about, their leg braces clanking, wondering what I was doing there. I was the only one who looked "normal" since there was no outward evidence of a problem. Being among them, I didn't feel lucky. I felt unjustly accused. They weren't the oddity. I was and I hated being there.
That was how I felt, with the other five men around me. They weren't healthy looking and it made me wonder how I looked. Maybe someone was getting Aredia like me, but that was not the main business of this room.
I tried to read a magazine but somewhere in the background was a dim, repetitive sound, like an ink-jet printer spitting out two short words and a longer one: Zzt, zzt, zzzzzzzz. Zzt, zzt, zzzzzzzz. Over and over. It took me maybe a half hour before I realized it was the unit at my left elbow, dispensing the liquid into my veins.
While I looked at magazine pages, fragments of conversations floated by.
"Mr. Willits, I have some pills for you."
"He wants to know about hospice care."
"Your white blood count is too low so we have to reschedule you."
Zzt, zzt, zzzzzzzz.
Zzt, zzt, zzzzzzzz.
Voices at the door prompted me to look. An old, black man in a wheelchair, with an oxygen line from his nose down to a small tank between his knees, was being asked if he can make it to the blue recliner. He nodded and struggled up as Ruth helped move the oxygen tank. Down to my left, a thin, pale man began to cough in wet, gurgling spasms, as if they were his last breaths. I went back to my magazine, as I fought off 50 year old memories of kids in braces and a mild feeling of nausea and claustrophobia that clinic used to produce.
"So how many weeks of radiation did you have?"
"You know, you shouldn't have stopped your potassium."
"Mr. Bartlett called in. He's throwing up too much."
Zzt, zzt, zzzzzzzz.
Zzt, zzt, zzzzzzzz.
I could see no clock. The pages measured the passage of my time as I tried to focus on the newest, fastest, cheapest and most effective products for the computer. The photos and stories had a touch of unreality as I tried to think of something other than this room.
Finally, the unit at my elbow gave out three loud beeps.
Ruth looked across the room and the man next to me pointed in my direction, as the source of the sound. "He's done," the man said. She smiled and nodded. After a few moments, she came over to check the unit and then removed tape that held the needle in my wrist and then the needle. I pressed the gauze over the entry while she wrapped it.
"Okay, you're done," she said with that smile. "Kathy will give you the shot in the other room."
I nodded and got up. Holding my magazines I left the room without looking around.
Slightly down the hall and to my left, Kathy met me and I got my Zoladex shot. That part I know about very well. When I was done, I took a sheet of paper to the reception desk to be rescheduled. I am to come back for another infusion in a month.
As I departed, I didn't look in the room to my left. I knew it too well now.
And then some good news -- sort of
Finally at home, I remembered my oncologist saying my PSA might be ready that day. I called in to Becky, who usually gives it to me.
"278.52," she said.
"That's all?" I asked. "We thought it might be 500 or more."
"Gee," I said, "that's sort of good news."
Becky laughed. "It's not too often I can tell someone their PSA is 278 and they say that's good news, but I can see your point."
I poured a scotch. I still had my support group tonight at 7, where I my job was to reassure men who worried about their single-digit PSAs, without telling them they are luckier than they can imagine.
It was going to be a very long day.