Day 19

July 5, 2012 was a largely uneventful day medically speaking. I got a unit of platelets for a platelet count of 2 and they drew two tubes to send to the Red Cross for further testing so they can send me some platelets. Please, sir, just a bag more. I did "stand up" for myself today which I don't do often and with good results so that was exciting (more below), but even more exciting was that Emily came and spent most of the day with me.

First my friend, Eric, made a surprise visit. I thought he was in West Virginia, but he just showed up at my door for a lovely unexpected visit. Then Emily came and we chatted, walked the halls (but I got tired after one mile--did 2.5 yesterday) and did three of this week's NYT puzzles. For the record, we *loved* Thursday's. Not everyone did, according to the website, but we thought it was astonishingly clever and well executed. Dr. Hill (my onc) came in and chatted with us for a while at bed time. He and his family are going to MI for a two week vacation so I gave him my opinion on the tourist spots of MI that are worth seeing (or not). The family I grew up with had a lot of relatives in Europe who would come for extended visits in the 70's and sometimes 80's so I've seen most of MI's tourist sites multiple times. I don't know if they still do the Ford factory tour, but the rest of the recommended list is: Greenfield Village/Henry Ford Museum, Mackinac Island, Petoskey Beach, Sleeping Bear Sand Dunes and if you find urban decay interesting and have a car in excellent working shape, a drive down 7 mile road in Detroit. Dr. Hill, Emily and I talked about what I can and can't do after my counts are around 500 and the answer is I can do almost everything I did before. My PICC will be out so I can swim in the ocean. I can eat or drink almost anything I want. I can go to the pedicurist. I can do the York 5K if I feel up to it. When my counts are above 1000, I can go to the dentist. O boy!

Now, to me standing up for myself. It's really very minor, but I am pleased I did it. I had had my labs checked twice yesterday b/c I got the platelet transfusion and my hemoglobin was 7.4 and then 7. They usually transfuse below 7. I had been unusually unable to do my walk with Emily and even after sitting around for several hours, still felt my knees and the big muscles in my hips were tired. I thought "I bet my hemoglobin has dropped well below 7 now; that is probably why I feel so cruddy." Emily also pointed out that I was remarkably pale. I asked for a set of labs and the nurse called the night float who came in and explained why I didn't need a set of labs drawn because I had just had them done 6 hours before and was due in 8 hours and I'd be fine. I listened and the conversation had gotten to that place where she was about to leave and I almost let her, but then I remade my case and added at the end, "I never complain about symptoms and I'm weak and short of breath. I really would like a set of labs checked." She checked my labs: 6.4. I got my unit and feel great this morning. I am a little proud of myself.

It's remarkable, however, she is twenty years my junior in life and eight years my junior in medicine. I am board certified. She is not even board eligible. Yet I really felt by virtue of being a) the patient b) myself that I had to really had to work to get what I felt I needed. What if I were not a doctor, but instead a semi-literate medical office cleaner or what if I were myself, but pre- all the therapy I've done. I would have woken this morning with a hemoglobin of 5.6. I could imagine myself, sitting at the side of my bed, feeling light headed and a little short of breath, but really having to go to the bathroom. It's easy to see how little things can go wrong in these incredibly complex care systems we have set up and lead to bigger and bigger problems.

I want to be clear; I think the night float was doing her best. I think she was trying to save me unnecessary blood draws; save her system unnecessary cost; she may have been a little afraid of transfusing me because I have had such dramatic platelet reactions and she may have thought I'd have a red cell reaction and she felt more comfortable managing my anemia than my transfusion reaction. Additionally, when I was a resident, I remember there was a certain pleasure we all got from doing the most parsimonious investigation possible. In fact, one of the nicest compliments I have ever gotten medically speaking was when Dick Knab (dear Dick, may he rest in peace) told me that my investigation of someone's abdominal pain was the most elegant he had seen in years. On the other hand, had she let me sit here with a slowly drifting downward hemoglobin, it is easy to imagine bad consequences.

Anyway, thank you, all my dear therapists, who have helped me develop the tools to stand up for myself and thank you, all my dear friends, whose imagined reactions if "something bad" had happened to me helped motivate me to speak up.

Happiest of Fridays to you all and speak up!