As I said before, I wanted to go back to work so badly when it was necessary for me to be off, and then when I got back, it felt really hard to keep up with adding work back to my daily life. But I adjusted. I had to. I had to set priorities, and let some things fall by the wayside. The hard part is trying not to beat myself up about it. I still manage to get a lot done for someone with the cancer.
So, back into it. It's been really important to me to try to recall the most important details about cancer and how it has affected my life since I was diagnosed. Ever since I learned that I have CML, I've been searching not only for factual information about chronic meyloid leukemia, but personal information - I wanted to know about other peoples experiences, and how they deal on a daily basis with having cancer. It helps me when I'm trying to gauge whether my experiences are "normal".
Speaking of normal, so at my May 2nd oncology appointment, my numbers are nearly normal, and the doctor lets me return to work. At my May 30th appointment, I've reached normal range for my WBC. I'm at 6500. Dr. Hillard seems happy with these numbers, and tells me that my cancer is basically in hematologic remission. Getting my white count within range earns me a two month hiatus from the doctor, and I don't have to go in again until the end of July.
Having two months between appointments is a little scary. I'm worried that I may be going down hill, and no one is monitoring me closely enough to catch it. I wash my hair, and pack by bag again before my appointment.
July rolls around, and again, I'm the best looking person in the oncology waiting room. The only magazine that I'm able to find is called "Lucky" and I think that it's someones idea of a sick joke. I really have been doing fairly well, just struggling a bit with gleevec/cancer side effects. I don't know whether to blame the things on gleevec or cancer, so I just try to cope. Most notably, these side effects are weight gain - I've gained 15 pounds in almost 4 months. Some of it is water retention, and my PP gives me a prescription for a diuretic, along with potassium, which I take on occasion, and generally makes a 5 pound difference in my weight. Fat Face McGee persists. (I call myself Fat Face McGee when I wake up and am retaining a lot of water in my face, especially around my eyes. It makes me feel puffy, and rounder. Sometimes I have a hard time recognizing my features as my own in the mirror on Fat Face McGee mornings.) Otherwise, the nausea right after I take the pill has subsided some, and now I get it at random times that don't seem to correspond at all with when I take my dose. I can't seem to shake the feelings of fatigue though. I'm sleeping at least 8 hours a night, sometimes 10 hours on the weekends, and I'm still so tired. I wonder if I'll ever get more energy? I'm also having episodes of bone pain that are more frequent, and more severe. I haven't had many skin complications, the way that a lot of other people do, but I have noticed that my skin is definitely thinner and more prone to tearing in places where my skin is already thin. I suppose that I'm lucky that most of me is pretty hardy and thick skinned.
My doctor is running about an hour behind, so its a long wait. When they finally get me back into an examination room, my blood pressure is a little higher than normal, as is my temperature. Dr. Hilliard comes in and asks me how I'm doing, and I say, "You tell me." My blood counts are good again. My hemoglobin is back to normal, in the mid range of normal, actually, and my whites are down to 5100. I tell Dr. Hilliard that I'm still plagued by fatigue, and he tells me that according to my blood work, he does not see why...my red blood cell count is good, and even my thyroid tests in the mid normal range. I was hoping that it was low, as that would be an explanation for feeling cold all the time, my fatigue, and my weight gain. He tells me its normal - good even - and I say, "So you're telling me that I'm just getting fat all on my own?" And he smirks a little, and says, "You're not the only one. If I could have a Baker's hamburger or a Hostess pie for every meal I would be perfectly happy." Ha. This man gets me.
So there was one additional blood test this time, that I don't usually have done, and this is to test the BCR-ABL protein in my blood. This is the protein that is supposed to be inhibited by my Gleevec. ( I'm just about at four months into my treatment, and I have never had a bone marrow aspiration yet. I don't know if this is strange or not. From my research, it looks like most people have one shortly after diagnosis, but they have yet to mention it to me, and I'm certainly not going to bring it up and ask for that kind of pain if my doctor doesn't think that I need it.) So the BCR-ABL test is supposed to measure my cytogenetic response to the Gleevec, which is the second stage to gaining "remission". My level on July 22nd, 2014 is 21.3. By the look on Dr. Hilliard's face, that is not as good as it could be. He tells me that they like to see it much closer to zero by the six month mark. So that gives me about nine weeks, cross my fingers, for it to go down significantly. I don't ask him, maybe I'm scared to, or maybe I just don't think of it at the time, what happens if it doesn't go down?
That's something that I really don't want to think about.
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