(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.
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.
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