Day 58 - wasting time on the highway

Got my labs today. They are exactly in order for some one who had HIDAC one week ago. My hemoglobin is 11 +/- (basically normal), my platelets are 35 (low, but not ready for a transfusion yet), my ANC is 60 (really low, but that's kind of the point). My liver and kidney labs are reported normal, but I do not know the details.

The overall idea of what is happening in my treatment these next couple of weeks is that my body is recovering from the chemo. Hopefully any microscopic leukemia that is still left around has been killed off nicely as have some of my normal cells and they are working on recovering. It is expected that I may need transfusions of platelets and red cells during this time and the idea is that I had my labs checked today to see if I needed a transfusion and if I did, they would give it to me today or tomorrow (depending on how easy it is to get the blood ready for me). The day started really smoothly; I got a call from the nurse before I even got home telling me my labs and that I didn't need a transfusion. I got a call from one of my doctor friends telling me the same (you know, belts and suspenders). I was happy and impressed with how well things had gone at this point, but the post is clearly much longer. Now, the complaining starts.

Just as I was sitting down to lunch, I got another call. The nurse told me that I had a lot of platelet antibodies and in order to crossmatch me successfully, they'd need me to come get some more blood drawn.

First, no kidding I have a lot of platelet antibodies. In fact, I spent five minutes sitting in the chair this morning while the blood drawer called over to the blood bank to remind them of this and make sure that we were drawing the correct panel of labs. They concluded that she should draw an extra lavendar tube besides the typical crossmatch labs that were already ordered which she drew. Turned out I needed two reds, not spun. Who knew?

Second, I live over half an hour from Manchester. This means that it takes me an hour plus the time to wait and get my labs drawn round trip. My family is worried that I am not the world's safest driver right now and didn't want me to drive unsupervised to Manchester. It was not a good time for some one to accompany me. Terry was trying to work and couldn't really leave his studio (he already did the Manchester trip once today). Ellie had a friend over and if Emily went to Manchester with me, Ellie's friend would have to leave. Getting back to Manchester was a huge inconvenience and a big waste of time.

Third, my need for additional crossmatching labs was highly predictable (in fact, I predicted it) and I don't really understand why they weren't ordered. It's not really my job to make sure the right labs are ordered, but I tried. I am not sure what else I could have done.

Fourth, the nurse who called me did not apologize to me for the inconvenience, time, an extra stick.

Emily and I drove to Manchester, I got the labs and the woman who drew my blood (who had absolutely nothing to do with incomplete orders being placed earlier in the day) apologized to me. The fact that she was sympathetic with my wasted time, gas and extra stick helped a lot.

Guess what? I have a bruise from this afternoon's labs, too--an extra bonus. I think I understand what happened largely. When I left Lebanon, the residents who did my paperwork were different ones than the ones who took care of me with my platelet problems so they did not remember my antibodies and did not write orders for the correct labs for me one week post discharge. I had benadryl the morning of discharge (and as I've already noted, it's not really the patient's responsibility to make sure the right labs are ordered) so my radar screen was not even operational, to say nothing of whether or not discharge planning was on it. I sent a "myDH" message to my docs in Lebanon asking them to make sure the right labs were ordered but never got an answer. Maybe something went wrong with myDH? I don't have enough insight into how things work in Manchester to know what went wrong there.

Clearly, the overall problem was with continuity of care, none of my docs really "owning" me. I'm not sure where the most useful point in the system will be to push to get this straightened out, but the more work Manchester and Lebanon do collaboratively the more important this will be to get right.

I do really want to point out though that the apology of the phlebotomist at CMC made a huge difference to me. First she listened to my complaints (which mostly consisted of having spent over two hours in the car driving back and forth over something that I specifically asked ahead of time to be sure was arranged correctly). Then she agreed that it was a huge nuisance and said she was sorry. That's it. "What a nuisance. I'm sorry." It helped incredibly. I recognized even at the time that she had nothing to do with the mistake at all, but I am just surprised at how much her apology helped.

On to more mundane topics. I did a little shopping and a little walking in between driving to Manchester, making lunch for Ellie and her friend, getting Ellie ready for camp and etc. Nothing too exciting, camp stuff and some miscellaneous presents to send to our friends in Japan. Also, some altoids which it turns out taste disgusting at this point.

The difficulties with eating continue. When I note I'm hungry, or that a particular food item sounds like something I might like to eat, here is what I have to think about:
1. does the food sound good because it sounds good or does it sound good based on 47 years of history? For instance, ice cream sounds good to a deep part of my brain, but if I actually think about what it tasted like the last time I had some, it does not sound good. It's way too sweet.
2. will my stomach/guts be able to handle this? (self explanatory--see previous entries)
3. is this on the neutropenic diet? (fresh fruits and vegs have to be cleaned well enough that it just hardly seems worth trying to eat them, lots of my favorite cheeses are out, multi-use condiments, yogurt with live cultures, deli counter things, anything I am not positive has been cooked properly are all out)
4. reconsidering the weird things that my taste buds seem to be doing on the particular day in question, does it really sound good?

A lot of the time, I end up deciding that what I really want is a nice glass of water and a piece of toast. Another week or so and things will start tasting better and the neutropenic precautions will be lifted. Then I'll be able to eat all the raw oysters and half cooked chicken I want.

Here's hoping we all keep away from food borne illnesses and time wasters.