Eight

(August 2008) The little plastic pill bottle sits on the desk—staring at me below the computer monitor—to remind me of two things: to take the anti-nausea pill at noon and then to go to the clinic at three for a Neulasta shot.

I stopped at the lab yesterday for a blood test and the results were less than stellar. As a result, they prescribed another shot to boost my flagging immune system. This shot has made me sick before, so I take the anti-nausea medication just in case. And, it’s a safe bet I’ll wake up stiff and sore. Neulasta makes me ache all over.

Not that I’m not inclined to be stiff and sore any way. I’ve never been a model of flexibility. I’ve tried stretching and taken yoga classes. Some people walk out of those classes feeling refreshed and invigorated. I limp out convinced that yoga is the Hindi word for torture.

People with CLL talk to each other in numbers. White blood cell counts, platelets, hemoglobin, red cells are all measured against the norm. I try to avoid such talk because it doesn’t really describe anything. It’s as though someone asks how you’re feeling and you answer “4.2.” But since I have no outward physical symptoms, the numbers are the only measure of how I’m doing. My white count, which is supposed to be building back up since I finished chemotherapy, has actually gone down further. The platelets are coming around slowly and my hemoglobin is still in the anemic range. Such is the fascinating world in which I live.

I’m not going to pretend it doesn’t bother me. I’ve pretended that before and it doesn’t last. I went through six months of chemotherapy and expected that I would be healthier than when I started. I still expect that when the tests are complete in September that I will be healthier. But these flagging blood test numbers worry me.
My doctor and his nurse tell me not to worry. It’s an exception to the “every case is different” assurance. I’m told they’ve seen a low white count in other patients in this clinical trial.

Still, doubts linger. In my case, the leukemia is traced to a single chromosome that went haywire. It’s supposedly responds well to treatment. And I’m hanging on to that hope.

On the other hand, the disease progressed rapidly in my case. That’s not good.

And then there was the chemotherapy itself. After three cycles, my white count was low enough that they cut the dosage of the fludarabine and cyclophosphamide. I continued to get the full dosage of Humax, the antibody. And by the sixth cycle, my platelet count was low enough that they cut out they fludarabine and cyclophosphamide altogether.

The CLL was virtually gone by the time I’d gone through three cycles and the doctor keeps saying he’s anticipating a complete response. But there is still a lot of room for uncertainty.

And if the bone marrow biopsy results come back October first and are not as good as I’m hoping, then what?

That’s the question I don’t even ask.

Seven

(August 2008) CLL is all about waiting. Since they don’t treat the disease until you either have symptoms or your blood lab results are bad, you’re in a period everyone refers to as “watch and wait.” Some people watch and wait for years. Not me. I started my chemotherapy one year after my diagnosis. Seemed long enough.

I made a conscious effort to be in good spirits when I went for chemotherapy. If I walked with a little spring in my step it would be clear that I was healthy and getting healthier. When they called my name, the assistant who escorted me to the infusion center would always say hello and ask how I was feeling. “I’m fine,” I’d say. “I can’t imagine why I’m even here.”

Chemotherapy infusion centers are not as dreary and dismal as you might envision them to be. There are some women with scarves on their heads and men with hollow eyes and skinny arms. But many of the patients don’t look any different than anyone else. And the conversation is pretty amazingly supportive.

Sitting in the waiting room, patients would greet each other as though they were long lost friends. Some weren’t feeling all that well, while many others felt fine, like me. But there was a common bond in what we were going through and, I think, a sort of resolve that we were going to come out on the other end of the treatments better than we went in.

Every nurse I had was great. In sixteen treatments, I only had the same nurse twice. There were times when they couldn’t find a vein and had to ask someone else to poke around for one, but that’s not a reflection on their ability. Some days, veins are just more stubborn than other days.

I’m not saying it’s the sort of place I’d like to go if I didn’t have to, but it’s not particularly hospital-like. There were volunteers walking around asking if you wanted more coffee or juice or if they could get anything for you. They had been through chemotherapy and other cancer treatments and were cured, and they came back to be with others. Wonderful people, those volunteers.

I didn’t find chemotherapy all that unpleasant. People would tell me they were sorry I had to go through it, or were happy for me once it was over. But to me, it was a four day work week, and two of those four were just half days. I read books, watched TV, kept up with my office e-mail, got waited on hand and foot (mostly hand, since that’s where they put the IV) and read a lot online. If only there had been a putting green.

So in the middle of June it all came to an end. For all I’ve said about how little it bothered me, I walked out of there pretty happy. My nurse told me to come back to visit and I said “thanks, but as nice as you’ve been to me, my plan is never to see you again in my life.”

My blood test results are coming around, but more slowly than I hoped. According to the treatment plan, I wasn’t supposed to have to come in for blood tests for three months. But with my white count still hovering near bubble boy, they wanted me to come back every couple weeks. My platelets had gone up and then dropped down again. No one seems to be particularly concerned about any of this, and they play down the significance of it, but if there’s really no problem, why am I going in for extra blood tests?

We won’t really know how well the chemotherapy worked until the first of October. I have another bone marrow biopsy in the middle of September and then get the results two weeks later. I’m not expecting good results. I’m expecting great results.

In April of 2007 I had a bone marrow biopsy that showed 79 percent—four out of five—of my white cells were leukemia cells. A year later, after three cycles of chemotherapy, the biopsy results came back with .04 percent—four out of ten thousand—of my white cells were leukemia cells. My doctor looked at that and said all we needed to do with cycles four, five and six was “mop up.” Less than one cell in ten thousand is considered a complete response, and in the closest he comes to a definitive statement my doctor said he is expecting a complete response.

In the meantime, I wait.

Six

(March 2008) Chemotherapy is kicking the hell out of the leukemia cells. The less than great thing is that it's also killing healthy blood cells.

My white blood count is down below normal. That leaves my immune system weak and my doctor keeps telling me to be careful about infections, and to call him right away if I start to feel anything coming on.

I've been taking an antibiotic and an anti-viral since I started chemo and I got a prescription for a "z-pak" antibiotic to put in my shaving kit if we decide to go on a trip.

I quietly move to the other side of the room if someone sneezes. When our granddaughter had a virus I actually asked the doctor if it was okay for me to be around her. (It was).

I am fretting way too much. I don't think about any effects from the leukemia. But every other bump in the road sends me careering toward the curb.

I was out trimming the palm trees and got poked by the barbs of a frond. By that night it was red and puffy. Instead of doing what a normal human being would do and ignore it, I looked at it again in the morning and called my internist. He asked a bunch of questions and finally concluded that I should try to be normal and if it changed, I should go see him.

It did change. It healed.

I took off my t-shirt one day and found some spots of blood on it. A small mole on my chest was bleeding. It was okay the next day but bleeding again the third day. So I made an appointment with my internist. I told him how silly I felt about the whole thing, that I was sure it was nothing, but I wanted to be sure.

He said he'd do the same thing if it were him and looked at the mole. Then he looked at it some more, and got out the bright lights and magnifying lenses before pronouncing that it was a scab, not a mole at all, and if I would leave a band-aid on it for a couple days it should be fine.

So, I'm teetering on the edge of being a hypochondriac. Not that it keeps me from doing anything or going anywhere, but I may get the Howard Hughes Award for hand washing. We eat organic fruits and vegetables. I'm trying to exercise more and do more healthful things.

Who would have thought that in the end, leukemia would make me healthier.

Five

(January 2008) Chemotherapy is not something you generally look forward to going through. From everything I had heard about it, I was anticipating nausea, loss of appetite and various other unpleasantries. Hair loss wasn’t a big worry for me since most of it had left on its own. But here I was, having leukemia but feeling fine and facing a treatment with the assumption the cure would be worse than the disease.

The doctor and nurses were not really much help on the lowering anxiety front. While telling me most patients tolerate it well and relating the anecdote of a surgeon who flies in from Florida, has his chemo and flies home to a full schedule of surgeries, they resorted to their standard answer; “every patient is different.”

Cheryl came with me for the first day of treatment, walking into the waiting room of the infusion center with more than a little trepidation. I much prefer calling it a clinic. Infusion Center sounds so--cancerous. I may be willing to face up to the fact I’ve got leukemia, but can’t they do some things to at least make it seem like just a normal disease once in a while. On the other hand, infusion is their gig.

They called my name and took us into a tiny room with a bed, a chair and a blood pressure gauge. A chemotherapy cubicle. And there we waited. The pharmacy didn’t have my orders, so what was supposed to be an eight hour day doing nothing turned into a twelve hour ordeal doing nothing.

When they finally came in with the IV bag and sank a catheter in my hand, I watched the fluid drip down the tube, into the regulator and followed the first drop through the tube and into the back of my hand. Here we go. Whatever it’s going to do, it’s starting to do it.

Throughout the day, there were lots of blood pressure and temperature checks, blood draws and the occasional new IV bag. Some medicine, some saline solution. We got home about eight o’clock that night. I felt fine—kept wondering if I’d be getting sick but had no problem. The next day I asked if this is what it would be like for the next six months and got the answer I expected, “sometimes people don’t have any reaction to the first treatment or maybe the first couple of them. Some people don’t have any reaction at all. But every patient is …” Yeah, yeah, I got it.

The second and third days went smoothly, and I was done in about four hours each day. I was in the lounge chairs on those days, doing crossword puzzles and reading most of the time. I left, called Cheryl and went in to work for the rest of the day. On the fourth day, I just dropped by to get a shot of Neulasta which is supposed to boost my immune system by convincing my bone marrow to kick in and make new healthy cells. About three the next morning, I woke up throwing up. By noon the next day I was okay, though because I didn’t dare eat anything until evening, I didn’t know I was okay.

And that was it. I went back every Monday for a blood test. Two weeks after the chemo, my lab results were e-mailed and I walked over to Cheryl’s office right away. My white cell count was 117 when I started treatments. Now, two weeks after the first cycle, it was down to 9. That’s in the normal range. I was almost in tears.

Chemotherapy is scheduled every four weeks for six months, and already my white cells are coming up normal, and I’m none the worse for the wear. I’m thinking chemotherapy is getting a bad rap.