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.
It is 1:30 and I am sitting in a waiting room at the University of Cincinnati hospital, nuclear radiation department, waiting for a bone scan at 3 p.m. I brought my laptop because I was warned that I would have to wait.
I'm here because I have joined a clinical trial.
I need to get down the details of how I got into it, since the mere thought of doing one made my skin crawl. But that is another subject. Meanwhile, here I am, ready to start. I can't believe I'm doing this.
A couple of hours ago, I meet with Dr. Silberstein who is running it here and his nurse, Gayle. The procedure was explained thoroughly. I signed the papers, had some blood drawn and got another full-body bone scan as well as some x-rays. At least I didn't have to drink barium.
An hour or so later, I met again with Dr. Silberstein and he showed me the developed films. There is a large met on the lower spine, close to the pelvis, another at the top of the right femur (thigh bone) and then one on the right seventh rib. The rib met struck me as odd. I remarked how I remembered there was one on the left, where I had some pain and the left shoulder. They might be gone, he said. It happens. But he wanted to take some x-rays of the two larger mets to determine how bad they were.
I got a small "diary," a single sheet of heavy paper folded, that I was to keep for a week, marking my levels of pain (on a scale of 1-10) and any medications that I took, It would help to determine my qualifications. I took it back a few days into January, indicating that I had basically been pain-free and had no need for medications. I also got x-rays of the pelvis and upper femur.
Now it was up to them to decide if I was qualified.
I got the call last week. Could I come in the next Thursday to start the trial? (Yes, I said.) Be prepared to spend the better part of the day. As she explained, I will get the infusion and then have to wait for a bone scan. That's what I am doing now.
I'm surprised how calm I am about it. There's really no need to be worried, given that Quadramet has been on the market. It is not as if I am getting a brand new drug. But it is a new voyage for me.
I arrived a little before my 11:30 appointment and was taken down to one of the radiology rooms. My first task was to lie down for a saline infusion. I stretched out while Gayle, Dr. Silberstein and another attendant came in to talk to me. The process was explained to me again: I would get a saline IV and the solution (either one of two strengths of Quadramet or a placebo) would be injected at that time. Dr. Silberstein, who would do it, would not know which it is but the procedures would all be as if it were the Quadramet, which meant full radiological safety procedures. When it was done, they do a bone scan a couple of hours later. Then there would just be follow-ups for the next 16 weeks, including my keeping a diary to list levels of pain and any medications taken. The purpose of this trial is to determine if Quadramet can forestall the onset of bone met pain.
I did get a chance to ask Dr. Silberstein about the x-rays of the lower spine and femur. How did they look? Good, he said. His concern was if the cancer had dug out any of the bone, making it prone to fracture. But from what he saw, it looked fine. That was good news, indeed.
An attendant, Mike, put the needle in and hooked me up to the saline bag and told me to just lie back and relax as the others began to chitchat. While a radio played 70s music in the background, I watched and listened.
What was apparent was the "team" (or whatever they might be called) were learning to work out the process called for in this trial. They kept talking about what should be done next, Most of the time, I couldn't understand it, but it was apparent that they were still learning the procedure for this clinical trial, as to what had to be done at what point. I suppose it might make one a little uncertain, but I found it interesting.
They finally retired, leaving me to small talk with Mike, until a guy in a white jacket came in the room with a small, greenish-gray metal box. It was about 4x4x10 inches with a tall metal handle of the same color. I knew what it was: a lead-lined box with whatever it was I was supposed to get.
The contingent finally returned. Dr. Silberstein said they had to wait for someone from the "radiation safety" section, or whatever he called it. They had to be present. This was getting ominous. In the meantime, we chatted.
I asked him about the x-rays of the two large mets. What was found?
He explained that mets to the bone could produce two responses. The bone might reinforce the area or the cancer might carve out the bone, making it prone to fracture, something that I had heard of and feared. However, he said, there was no evidence of the latter. The bones looked good.
Another piece of good news.
I asked him if he knew which spinal bone it was that had the met. He screwed up his face and thought, then said he couldn't remember. He named something like "L1" as a possibility but he wasn't certain. (Nor am I about that label.) I said okay.
Another white-coated young man arrived with a larger black box that he held with a handle. I learned later it was a Geiger counter. It was time to start.
After some discussion about the catheter in my arm, Dr. Silberstein opened the lead box and lifted out a glass tube. He extracted a syringe from it and was commenting to the others something about the range of the "gamma rays" in the syringe that it was safe to hold from the ends since they had some sort of "half-inch" range. (It would help if I knew what I was talking about.)
"Okay," he said, "this is it."
He called for the time as he pushed the needle into the catheter. Everyone looked at their watch. One said, "12:17" and wrote it on a clipboard he was holding.
"You won't feel anything," Dr. Silberstein assured me.
I didn't look down but he was there with the syringe. He had explained it takes about a minute but it seemed to go longer. He said earlier that it has to be done slowly because the substance can capture calcium if done too fast. I nodded and continued to keep my attention on the contingent watching him inject the substance. Meanwhile, the young man with the black box stood in the back, holding the instrument in front of him and towards us, watching what had to be dials.
Dr. Silberstein finally finished and withdrew the syringe, announcing proudly that he had done it without a drop spilled.
Have you spilled it before, I asked, not really knowing what I was talking about.
Once, he said, then going into an incident when some radioactive substance was spilled on the floor. One of the other doctors who apparently remember the incident chimed in. Dr. Silberstein completed the story with how he had to relinquish his shoes and had to drive home in his socks.
This was definitely not the usual doctor-patient setting and, frankly, I was enjoying it.
The syringe went back into the green box and the contingent began to talk again about the procedure while Mike began to disconnect me from the catheter.
When he was done, he said I had to come back in two hours for another CAT scan.
I went and got a bite to eat at the coffee shop, sitting in the sun that poured in through the huge windows, wondering if there really was a dose of radioactive Quadramet pulsing through my veins. I didn't feel any different, other than self-conscious and curious. Then I realized: I have to start putting this down into words.
I went back to the waiting room, pulled out my laptop, found an outlet and started to write.
"It is 1:30 and I am sitting in a waiting room
[A section devoted to this clinical trial has been created at this site.]