Monday, January 21, 2013

Day 219 - return to the scene of the chemo

What a fabulous, complicated day today was! First I headed up to Lebanon to see Dr. Hill. Our visit was good. We talked about Dr Stone's visit and the fourth round of chemo. John said that he thought if I were to relapse he would not feel that it was due to the three versus four issue; that some people relapse and some people don't and it's often very surprising and people you really think will do badly do well and vice versa. That matches my experience as well. He also said that if I thought that if I were to relapse that I'd blame it on not getting a fourth dose, that we should just give me a fourth dose. We talked about how he was not excited to give me more chemo, largely due to how sick I'd been with the neutropenic fevers. He told me he didn't see the time elapsed as necessarily an impediment to more chemo if I felt like it was the right thing.
When I think about getting a fourth dose, I wish I had had it in some ways, but now that I am back to my life and getting more and more normal, it is hard for me to think about going out again and being out of work for two more months, potentially getting another fever, needing more blood. I was lucky with both of my fevers that I did not end up really sick and in the ICU; maybe this time I would. I have seen patients end up with life changing (and not for the better) complications from their ICU stays even with perfect care. I might or might not be gaining something by doing risking a fourth course. I think I'm good at this point.
After seeing John, I stopped in for a visit with Ira to talk about palliative care and that is always fun.
My final stop in Lebanon was 1West where I spent much of last summer. It was fun because some of the nurses didn't recognize me at first and would say things like "May I help you?" then I'd laugh and say "you don't recognize me!" Then they would. It was fun to see them for me and I think for them because not very many of their successes come back to chew the fat. One of the nurses (ironically the one who admitted me the first time) took me aside and said that he had a young patient who had just been diagnosed with AML and who was starting consolidation today and who was totally freaked out. He had just told the nurse that he wished he could talk with someone who had been through it. Would I be willing? Are you kidding? What a fabulous present to me that I could do that! I did talk with him for about an hour and I think was helpful for him. It was interesting because I listened differently from how I would as a doctor. I did not have to help solve or develop a plan to solve any of his problem. All I had to do was be sympathetic and listen. (Those are the main things I do as a doctor, but I have to be waiting for any opportunity to say just the right thing at just the right moment that can sometimes be tremendously therapeutic. With this man, I had no need to be deliberately therapeutic; just deliberate. As a doctor, I also have to develop a plan for problems. I listen and am not primarily thinking about how am I going to solve the problem, but when a plan starts forming and needs a particular condition or another to work, I will check it out with the patient. None of that needed to happen in our visit today. Also, it was not my role to explain any medical things to him, just to listen sympathetically.) I think I could be a professional visitor quite happily.
One interesting thing I did find out is that he has no idea who his attending is. He said that a bunch of doctors came in and talked with him. I explained how attendings worked and told him that he might want to figure out who his main doctor is because that's the one whose opinion he was most interested in. I hadn't realized, but of course it's true! how confusing the whole student, resident, fellow, attending thing is. Especially since some of the doctors are so young looking and some of the learners are non-traditional students and older.
Then I went to the coop, drove home, went to therapy. A funny piece of trivia about me is that prior to leukemia, I never got headaches--maybe one every few years. During treatment for leukemia, I got headaches when I was anemic, in fact, they transfused me earlier than they would have otherwise because of them. Now, I get headaches much more often. Need to eat? headache. UP too late? Headache. I guess now that it knows how to do headaches, there's nothing stopping my central nervous system now.
Another tiny piece of trivia that made me happy is that I remembered when standing in line at the cancer center that the last time I had been there, I felt that I was fairly normal, but there was about a ten minute wait and I knew I couldn't stand for ten minutes. Today, I knew I could stand in line for an hour if that is what needed to happen (it wasn't, thankfully). Another touchstone, moving toward normal.
You can recognize me, right?

For me, for tomorrow, I will hope for another day where things move infinitesimally yet inexorably towards normal. For you, for tomorrow, I will wish for safe driving in the snow. Maybe I can borrow that wish too. Can I have two unrelated wishes tomorrow?


  1. More news! Good news. I will pray all the right decisions are made! I hope and wish your new found friend will do as well as you, with less fever and there side effects! And tommorow I wish for all our safety traveling.

  2. Agreed! I feel like I had such an easy time of it, relatively speaking. I hope he has such a time, too. And...practically no snow! Wish granted.