Tuesday, September 4, 2012

Day 80 - I'd rather have a normal day, thanks.

So, today I had a set of labs done at the NCCC in Manch. Dr. Manno had wanted to follow my platelets and hemoglobin to normal. The labs were a little surprising today; we were not able to follow my hemoglobin or platelets to normal today. Or, more worrisome, even my white cells. My hemoglobin had improved to 10.5, but my ANC had worsened to 1230 and my platelets were still low at 104. My liver and kidneys remained normal. This far out from chemo every time we check my labs they should look more and more normal until the next consolidation and these labs looked less like normal in two of the three cell types. To me this looked like a catastrophe. (Remember I'm good at jumping to the very worst possibility.) I was sure the leukemia was back with a dozen of its biggest and meanest cousins and I was worried. OK, I was more than worried and sure I was heading toward a transplant and all sorts of bad stuff. Maybe I should stop reading the primary literature on AML.

I called Dr. Hill's office and left a message with the secretary. I waited a whole hour and then half an hour more and then I couldn't take it any longer so I called and spoke with Dr. Hill's nurse, Elise. I have spoken before with Elise and she has always been extremely helpful. I think she was impressed by how anxious I was about this and told me that she would be sure that Dr. Hill saw my labs but he would probably be unable to call me back until 4:30. (Note number one, be sure the person taking the message understands the urgency to me of the message. Note number two, it really really does make a difference if you give people a time to expect an answer.) Dr. Hill did call me back at about 5:30 and pointed out that I had had a bad cold last week and that that was probably what caused the drop in my counts. O, yes, that. Remember those quaint old days when I would have some symptom and say to myself, "Something could be wrong with me or I could just be overworking; I'm sure it's overwork."? Now, almost any symptom can and will be attributed to the return of the leukemia. Dr. Hill further told me that he could not promise me that it wasn't badness causing my labs to be weird, but that it was much more common to be due to a cold. In fact, he had seen suppression of cells due to virusses a lot in the past and had seen it due to leukemia relapse much much less frequently.

He also pointed out that my hemoglobin was improving which is not what we would expect if it was the leukemia causing the drop in white cells (if the leukemia was back, one would expect it to make all the cells decrease) and he reminded me that my leukemia has been very well behaved so far and recurring so early and during active treatment would not be consistent with what we have seen of it so far. OK, deep breath.

I was reminded (and I told him) about how a big piece of what doctors do is holds patient worries for them.  I cannot tell you how much better I felt after talking with him. Now when I have doctor/patient events like this, I try to remember to turn it around and think about being a doctor myself. I can recall having conversation when my patients either said they felt or clearly felt tremendous relief and am amazed that I can do that for someone, too.

The plan is to go to Lebanon tomorrow and re-do the labs there. Then I will see Dr. Hill, we'll look at the results (he'll probably ask the pathologist to look at the smear too) and decide if it looks reassuring or potentially bad. If it looks potentially bad, we'll do a bone marrow biopsy right then. If not, we'll drive home and I will not get another hole in my iliac crest.

I can't remember if I've mentioned that after the whole leukemia treatment thing is done and a couple years behind me, that I have wondered if I would use my bone marrow biopsy scars as the basis for a tattoo. Not quite sure, but maybe and, if so, I have some starts of ideas. The funny thing is I'm not quite sure how many scars I'll end up with so how exactly can I design around that?

So, today was filled with a lot of worry, but I was able to soothe myself pretty effectively with weaving. I am making a pillow for Tommie's office and yikes! it just flew this afternoon although I did seem to do a lot of unweaving and re-weaving. I am really pleased with it so far and cut it off the loom less than an hour ago. I went to finish it and d'oh! I have not a single spool of thread in the house. Not a one! Not even a bobbin that I can pretend is a spool of thread. I am thinking of running up to Walgreen's right now so that I can finish the pillow tomorrow morning before we have to leave for Lebanon. Can you tell I'm excited about it?

Other than worrying and weaving today, I didn't do a whole lot although Ellie and I made a trip downtown after school. She got her usual sandwich from The Green Bean and I got some really delicious fish chowder from Loaf and Ladle. I was disappointed it was not clam chowder before I took my first bite, but that didn't last long. She was not disappointed by her sandwich from The Green Bean. It has three ingredients and always tastes exactly the same.

So, today's news is not the best news I've ever given in these pages, but I'd like to encourage you to think it's going to turn out to be viral. I am really no longer anxious about it and wish that you won't be either. I'll let you know tomorrow if my labs were reassuring or worrisome (or most maddening, in the middle) and if I am the proud owner of a fourth hole in my back or not after we get back from Lebanon which will likely be five-ish.

I know you will be praying and thinking and hoping for me and I appreciate that. Thank you.

For all of us, good news and a surprisingly good bowl of chowder.

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