The day started normally enough at our house: I drove Ellie to school, we jumped in Terry's car and stopped at Starbuck's then proceeded to the Manch NCCC just as we've done a dozen times before. I had felt you may recall as though I were going to get a fever and checked way more than usual--always 99something. At the NCCC, my vitals were fine, they drew my labs and about the time they came back to tell me I needed platelets, I was pretty sure I needed more than platelets. Upon recheck my temperature was 101.4 and we began discussing what to do with me. Dr. Manno really wanted me to stay in Manchester at CMC which makes it easier for the people who love me to see me, but also makes it a lot harder for me to be a patient. For one thing, I know it is very hard for some of the nurses to take care of me when I am in my AML baseline because I am their friend and they're sad to see me without hair, etc. taking care of me sick would be even harder. For another thing, I am somewhat disruptive (not on purpose, but just by virtue of knowing everyone) even though CMC is really good at patient confidentiality. The final issue was that I wanted to be able to whine and complain and wasn't entirely sure I could do that and then go back to work with the same people.
Dr. Manno decided that I could go to Lebanon and that I should wait to get my cultures and antibiotics there. He also thought that transport by Terry's car would be ok. I felt I wanted to get to antibiotics as soon as possible and that meant we should leave right then, but I saw a patient of mine at the elevator and I really did not want to explain to her and her brother in my current state what was going on. So we waited and in the meantime, the nurse got a hold of the doctor up north who wanted me to wait and get cultures and antibiotics in Manchester. Shuffle back to the room. I had just peed to prepare for the drive up north so there was a fair delay of antibiotics while I guzzled water so I could produce for them. Blood cultures were done, my production eventually happened and I got my antibiotics.
Then there was the issue of the platelets (remember those from the beginning of the story?). Well, it turns out that the only two packs of platelets in New England that would match me (or that they thought were likely to match me but they weren't sure yet) were in Dedham, MA. You might remember how with my previous consolidation it went really smoothly and I'd show up likely to need platelets and they'd have them pre-matched and ready to send to Manchester. I am not sure why that happened the first consolidation and not the second, but there you have it. About six hours into this, fevers are starting to come and go and I am starting to feel really lousy, Dr Hill calls and says they'd really like me to get the platelets in Manch if possible (my platelets were 2 and I would not survive a car accident, for example, at that level). He was trying to sort out where my platelets were, if the testing had been done or if we were having a transportation problem or what. Eventually it turned out the platelets were still in Dedham, not quite finished testing so Dr. Hill gave the ok for me to arrive in Lebanon, Dr. Manno agreed that I could go by ambulance and they ordered me up one.
I was feeling weak but ok when they loaded me up. I slept most of the way (foreshadowing: watch for this as a common activity), waking only twice when we changed speeds at interchanges to ask essentially "are we there yet?" When we got here, they wheeled me through the ED which I think must be about 100 acres big and through some back halls I don't recall ever seeing and to my beloved and familiar 1West. Either when I arrived or soon after my temperature did not register on one of the thermometers and was 104.5 on the other. The first night was spent rolling from the left side to the right and then the right to the left. The night float came in and tried to do an H and P on me, but I kept falling asleep on him. Around 9 o'clock they sent me down for the dreaded chest xray and even real tears did not keep them from making me do it, but I was so happy I could just fall apart over having to go down for a chest xray (in retrospect, I am happy. at the time, I just didn't want to do a chest xray.) Too bad: bundled up in the wheelchair, it was not the "coffee enema" transporter, swish swish swish through a million hallways, stand, breathe in, turn, etc. then do it in reverse. I was amazed when I asked that it was only 9 oclock. It felt to me like it had to be at least 3 in the morning. Left, right, left, right. The nigh float came in and told me that they had a partial ID on my bug and it was a "gram positive cocci in chains." He thought that there was some chance that the lab had misidentified the form of bacteria, especially so early on so he was going to add an antibiotic to cover "gram positive cocci in clusters"--vanco. This was probably exactly what I would have done, too. I was actually pretty amazing that my sample started growing something so fast. It meant that I must have had a huge bacterial load or a very fast growing bacteria or both. A few more left, rights and it really was three and I got my platelets and we'll leave Thursday about there.
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