Bethany gets her blood tested at least twice a week, and yesterday she had another blood test. The doctor from the Lab called to tell us that the lab tests she had yesterday were more stable than the tests she had done in the hospital.
I don’t have access to yesterday’s numbers, but the last four columns in the chart below were all taken during her hospital stay last week. (Click on the chart for a bigger view, and click your “back” button to return to this article.)
The numbers in red represent “critical lows”. She’s down there in all three counts: hemoglobin, white blood cells, and platelets. It’s good that she’s “stabilized” from this. There’s another good thing: Her LDH level is down to 340. As recently as September, her LDH level was 621. As one nurse told us, “That’s the disease process”.
At least what we’re seeing here is nothing out of the ordinary: during a Vidaza cycle, all of Beth’s blood levels get eaten up. Note that her White Blood Cells level on 9/26 is listed as a “critical result” – and the platelets are not far behind, I’m sure.
The good news is that her “blasts” level has been at 0% for a while. That’s fantastic. Also, her neutrophils are back up, and in conjunction with some things called “Bands” (which I have not been showing all along), things could be better but they are still ok.
I wrote to Dr. Rossetti: “Beth has been feeling some of the symptoms of low hemoglobin – tired, body aches, light headed. We thought this might be some of the effects of the Vidaza, (she had her last injections yesterday), but maybe not. All in all, she had a pretty good weekend, despite that she was in the middle of a Vidaza cycle. But we can tell when she’s getting ‘low’ because it’s a big effort for her just to get through taking a shower in the morning.”
He noted that “these types of disorders can be exceedingly difficult to cope with…especially in younger patients”. He also reminded me of both “the magnitude of the disease” and also “the curative goal of transplant.”
That is, she’s going to feel crappy. She’s got leukemia which is eating up her blood. But on the positive side, there is great hope that she can be cured of all this. We just need to sit tight.
For Bethany, how true this is. When she gets a transfusion, she feels better, somewhat normal. But her blood is dying, especially her red blood cells, which are being consumed and not being replaced.
The red blood cells, the hemoglobin, carries oxygen from the lungs to the rest of the body. The oxygen burns nutrients for energy, and the resulting waste products are then collected by the hemoglobin to be released from the body. All of us live by that process.
For Bethany, the other blood levels fluctuate – as you can see in the chart nearby – but her red blood cells just simply fall and fall and fall. At only one point did the hemoglobin number rise (see this previous chart – and there it may simply have been an anomaly, within the margin of error).
This is insidious. When her blood suffers, every cell in her body suffers.
We’ve traveled through a relatively uneventful time in this illness. Beth mostly sleeps a lot, and takes in some blood every once in a while. Now we’ve got a little flurry of activity coming up, and we should learn some important things.
Beth’s hemoglobin level fell below the magical 8.5 level, to 8.4, and so she’ll be going in for another transfusion: type-and-cross-match today, and two units on Wednesday. One of the things that I’ve read on the CMML discussion boards is that there is a kind of deep-down body pain that you get – it’s the pain that prevented her from working back in June – and my thought is that 8.5 + two units will take her to a point at which she won’t have to deal with that for a while.
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