Could my life please be more meta?

Sometimes it feels like the whole darned leukemia experience was designed just for me so that I could really understand what it is like to be a patient. OK, got that lesson. I don't have all the nuances of being a patient, but I got a fair part of the experience: fear, kindness, what feels nice, what is aggravating, delirium, chemobrain, etc. The latest is almost too weird: my beloved hematologist, John Hill, is out sick now. The person I talked with said he didn't know what John was out with, but that he'd be out for a couple of months. I am shocked and the world feels a little less secure than it did before. I worry, "but who will keep me disease-free and healthy?" I hope very much that he is OK and just like a regular patient, not knowing what is going on makes me worry more. I don't want to intrude in his space; I just want him to get better. I feel so helpless knowing that there is not much I can do. I know how nice it is to get cards so I sent him one. I told him if he wants to talk ever about the doctor-patient relationship from all angles, to let me know. We have pretty much every aspect covered at this point.
Why was I talking with someone up north who could give me the news about John? John and I had decided that I'd wait on my routine followup until he came back, but then I started not feeling that great and needed to see my regular doctor. The differential diagnosis of "doesn't feel well" in a leukemia survivor always includes leukemia, so we had to check a CBC. Guess what! My CBC was not perfectly normal. It was slightly abnormal in that way it often is, slightly low lymphocytes, slightly low platelets, normal everything else, no blasts or mis-shapen cells. My PCP and I decided that we were not going to worry about this, just re-check in a week or two. I was walking out the front door to go running and my phone rang. It was John's secretary telling me that the fellow wanted me to come up for an appointment tomorrow. I did really well and didn't panic, just asked her if there was new information. Of course, she didn't know so she paged him. He said, no, there was no new information (I imagined that maybe the pathologist had looked at my smear and called him without letting me know that there was something wrong). He said he just thought I'd like to come up so that they could take a look at me and re-assure me that there was nothing wrong. Nah, I'm reassured already. I'll do my routine followup with them--this time--and really really hope that John is back in three months.
It's so funny because when I first started practicing (and to some extent still) I felt like how can people find what I say so re-assuring or even find me so comforting. I mean, it's just me; I spend 24/7 with myself and don't find me re-assuring or comforting. Of course, what makes the relationship work is not me, or it's not only me; it's me in the role. I really see how some one in that doctor role who has seen you through tough stuff easily becomes, almost irresistibly becomes, some one you rely on, who makes you feel safe. I continue to be astonished that I can do for other people what John does for me, in the sense that I can make people feel safe when they are most vulnerable. What a fabulous job I have!
I am thankful that I get the privilege of being a doctor. I hope things turn out ok for John.

Day 165 - actual leukemia news

It's all very complicated. Back in July (remember back then?) when I had my post induction bone marrow biopsy to prove that my marrow was officially "empty," they sent off a bunch of tests. These tests were prognostic markers of various sorts and John wasn't sure if they would be meaningful because there was not any visible leukemia left (i.e., if they came back with "no marker found," it could be because the marker wasn't there or because there wasn't enough leukemia for it to be seen). The markers are supposed to be run on the first bone marrow biopsy material--the one that the diagnosis comes from--but they didn't for complicated logistical reasons. We knew there was still leukemia even in the "empty" bone marrow biopsy because if you stopped treatment after only induction, the leukemia inevitably comes back; it was just not something we could actually see or identify even with a microscope. The most important test (a marker for badly behaved leukemia) came back negative. Did this mean the leukemia didn't have this marker or did it mean there was no leukemia left to find the marker in? There was no way to find out.

Back in July a different one of them came back positive, but in the general flood of tests and information, it was not noticed. Just recently John was going over my file to present it to the second opinion guy. He noticed that NPM1 was positive. This is a marker that is positive in "wimpy" leukemias, ones that tend to respond well to chemo. This is very exciting news and offers further hope for my not needing to do anything further to get rid of this leukemia and is encouraging for it not returning in the future. Excellent news!

I am still planning on getting a second opinion just because I would much rather do it now and not need it than look back with regret at some point in the future, wishing I had done it. Dr. Hill said he spoke with Dr Stone who agreed to see me and that the Dana Farber will be calling me at some point to set it up. I highly suspect he will say, "thanks for the visit; nothing further needed," but will be glad to have it said.

We checked my labs today. Good, good, good. My hemoglobin is slowly climbing. It is now all the way up to 10. This is the first time in a while that I have been in double digits. I can't say that 10 feels any different from 9.3, but I'm holding out for 12.

I also had a bone marrow done today which (continuing the good NP Beth's streak) did not hurt. She had a very hard time getting in, however and I think I may be sore tomorrow. 

Today's final activity was a CT scan of my chest and darned if it's still not normal! The previous nodules have gone away which is good, but now there is some smutzy stuff that looks kind of like pneumonia except I don't have a fever or a cough. I'm going to get a visit with a pulmonologist to sort it out.

One final thing that happened today that really brought home the whole recovery thing to me. I had to use the bathroom in the cancer center and when I went in, I had a quick little flashback kind of event to the previous time I had used it. I had been feeling very fragile then and decidedly don't feel that way now. What does it feel like to "feel fragile"? Very much on alert, because anyone could knock into me and knock me over and that could be disastrous--the whole world is a low level threat at that point. Very prominent, like everyone can see how fragile and out of the ordinary I am and is staring at me. A little entitled because I am fragile and need extra care or at least caution so back off. Also, slower and more carefully moving because I don't want to make a mistake and fall or bruise myself. And the whole way I experience my body is different. You know how when you were a kid and you were at someplace where you had to be very restrained (church, a particular relative's house, a nursing home). Do you remember how different your body felt when you were there and when you finally got to leave? I always felt like my arms were too long and I moved too much, for example. It is that kind of a feeling except that I felt like I could break easily, like really if I put too much pressure on my arm even, it would crack. It's great to feel more robust.

Today was a really good day; I'm not sure what to wish or hope for for myself. Perhaps today I will use my wish to wish for good health for those who have taken care of me through leukemia travels. I am not sure what you might like for tonight. Perhaps good health for those who have taken care of you at various times in your life?

Day 87 - more premedication

Since I ran out of time yesterday, today I drove back to Manchester and visited my office. Everyone seems to be doing well. I missed a couple of my pals and didn't get to visit the family practice side because I was running out of steam (sorry, I'll start over there next time so I can be sure to see you, Linda, ChiChi, Anne and other FP friends!) I did want to tell you about one quite moving experience I had. I saw one of my patients coming in and said hi, hugged him, exchanged pleasantries as he walked by with the MA to his room. I took care of his mother who died in my care about a year ago after I discovered her cancer was back. I was chatting with someone else when he came out and he came over specifically and said "I've been thinking and I don't know what you have, but you don't deserve it and I'm really sorry you have it." In light of the fact that his mom who was one of the nicest people on the planet had died not long ago from a disease she did not deserve, this really touched me. I was so glad he told me this and really value his thoughts and wishes and appreciate that he told me. He was clearly quite affected by my being an obvious cancer patient and I was touched by that as well.  When I regard myself, it seems like it's just me--not really interesting or out of the ordinary; I mean I spend 24 hours a day with myself. I forget the thing about how I feel about my doctors is how my patients feel about me. I am very lucky to get to be a doctor.

I also got some fabulous cards from patients who were doing well, but wanted me to know that they were coming back to me from their "fill in" PCPs, one who had gotten a successful organ transplant, one from my nearly oldest patient who is extremely lively and would be n good health for a 75 year old (except she's over 90).

Then I came home and tied on my warp and started weaving my newest experiment. So far, so good or at least no disasters. Terry has a friend who is a ceramicist. She told him once about something she had made that when it came out of the kiln looked horrible and it just happened to break. I was thinking how tremendously satisfying it must be to just drop and shatter your work that you don't like. When I don't like something I've woven, I can cut it off the loom, but it doesn't really get destroyed and it would not be very satisfying to cut it into bits, but to just drop something and have it fly into a whole bunch of pieces, gone forever! Maybe I'm in the wrong medium.

I also voted and went for a surprise three mile walk this afternoon. There were no stickers in Exeter which disappointed me.

This evening was back to school night for grade six so I went off to middle school. I was expecting to be unimpressed (because honestly we didn't like the middle school much when Emily was there), but I was actually quite impressed with Ellie's teachers, their attitudes, organization, how smoothly the whole thing went, etc. I had been hopeful for a good year, but now I'm really expecting it. We hear every year about how wonderful her class is, that they are kind to each other, that they are respectful, conscientious, pleasant. They already went on a field trip to Pawtuckaway and the teachers said they had never done that in the second week of school before. One of the teachers said for the first time in 28 years of teaching she was not using a seating chart. The vice principal said that the teachers at all the feeder schools said that this year was filled with extraordinarily nice kids. What a tremendous piece of good fortune for Ellie (and us).

That pretty much sums up my day, another really lovely, low key day filled with pleasant activities. Patrick asked me to recount the specific incident that made me feel like Dr. Hill thought similarly to how I do so here it is.

I think this happened on my very first night in Lebanon. When I first was walking into the liquid tumor ward, I saw a man with "John Hill" written on his lab coat so I stopped him and said that I had been instructed to hand these (my slides) only to him so here they were. I actually thought of something Patrick says and handed them to him with two hands. They were in a little cardboard box that looked kind of like a folio. He came back hours later after having looked at them and asked for my story and gave me the scoop as he saw it. You may recall how I got my diagnosis. Briefly, I had a virus in March, felt really really terrible and got a set of labs, really just for entertainment purposes because I felt so terrible. My ANC was 700 and I was a little anemic and leukopenic but had no blasts. I thought I am probably B12 deficient, let's take some B12 and recheck in a few weeks. Weeks turned into months and I rechecked on June 14, with a marrow to prove the leukemia on June 15.

When we went over my case, one of the things we really focussed on was why were my labs terrible in March? Dr. Hill didn't think the time course was right for that to be early leukemia and thought it might have been a pre-malignant condition (myelodysplastic syndrome MDS) which would alter the treatment plan for the AML if it were. We talked a lot about that and the implications and if there were any other blood test I had had around anywhere and then he offered that he didn't think it would have made a difference if I had gotten the lab work done sooner. I was feeling pretty foolish and badly for not having taken better care of myself and done them sooner, but I didn't think I had voiced this thought so I was a little surprised that he had picked up on it. What came next was what really got my attention however. He then said, "That's really what I think. If I thought it would have made a difference, I would tell you if you asked. [pause] If you didn't ask I wouldn't have said anything about it if I thought the delay would have made a difference." This answered exactly the question I was thinking, but was not going to ask. It is also exactly what I have said to patients, and without being asked, just like in his case. I think it is probably in the doctor communication books "too much information," but I wouldn't be able to stop myself from saying it because it is very important to me that my patients really feel I am honest with them. I felt that Dr. Hill's telling me came from exactly that same impulse--a little too much info, a little off track, but so important to the relationship that he couldn't let the moment pass without saying it.

Maybe you feel like this is standard stuff, but I don't think it is. Offering the reassurance without my asking for it and then offering reassurance that he wasn't just saying it again without my asking and finally the TMI topper of "I just wouldn't say anything unless you asked if I thought it had caused you harm" without any request for clarification on my part was such a familiar train of thought to me that I really felt like I could trust him. Here was a person I understood and who would understand me.

Of course, a relationship is not built on one moment only even a fabulous one, but rather many hundreds of little moments and there were many others, some of which I've mentioned and some of which I will mention as they happen or as I have a day without much else to talk about besides a conversation from two months ago. This, however, was when I decided that I would be OK in Dr. Hill's hands.

I hope you are able to relax in the care of your very own doctor. If not, don't be a knucklehead like me, go get yourself a doctor you are comfortable with and visit them.

Day 42, nothing special to record

Things are getting very much back to normal. Tommie is here for a visit. Ellie cleaned her room of extra books that she wants to keep, but doesn't want in her room (being both packrats, we're very understanding of this and just put them in storage) and then after I got 2/3 of the way through packing them carefully so they would take up the minimum number of boxes, she wailed, "Mom! you messed them up; some of those are books that are supposed to go back in my room after I clean it!" She couldn't tell me which ones were and which ones weren't except for one pile which I did keep out separate so I feel like things are really returning to normal. This is good because in six short days it's back to chemo jail, or as Tommie calls it "the clinker."

We took the dogs for a walk and they had a great time and we saw the most dragonflies Tommie has seen in a while doing all kinds of interesting dragonfly business which aficionados like Tommie can point out. A tired dog is a good dog and if there are two and one is a terrier terrorist with a taste for plastic, two tired dogs are even better than one.

Otherwise, I hung out today, did some weaving and went to Kittery with Terry for coffee and to visit his studio, an utterly satisfying day.

I don't think I've talked about how I was diagnosed yet so I'll do that now in case you haven't heard the story. The more I learn about AML, the more I think I was tremendously lucky because I think we caught it pretty early and it was totally a fluke and really very weird too.

So, in March, I was in clinic one afternoon and just felt terrible, like even after chemo and rigors, I still have never felt as terrible as I felt that day. Everyone who looked at me said they thought I was pretty sick looking. Clearly I had a virus and every other time in my life I've had a virus, I have said to myself, "I have a virus; it will go away." This time, for reasons I still cannot really explain, I said, "hey! I've never felt this bad before, let's get a set of labs and see how bad they are."

My ANC came back at 700. It should really be more like around 2,500 and 700 is actually quite low. I made plans to recheck it in a few weeks and the next thing I knew it was two months later. I checked it on a Thursday, actually on my way to cancer committee where I saw all the oncologists and the pathologist who diagnosed me. Around lunch time, my secretary came back and said, "Dr. Braun, I'm looking for a doctor, it's the lab at CMC, but you can't take it because it's about you. I'm looking for a doctor! Where is everybody?" Eventually she found one who took the call and when I had a break in my day, I went over and got the scoop. Dr. Ong told me that they thought I might have leukemia.  My ANC was 200 which was really impressively low. On my drive home, I called the pathologist and talked with him. I had myself totally convinced that it was viral because I can always convince myself that I have a virus. In retrospect I was maybe a little tired, but I wrote that off to "I'm working too hard" which I knew was true.

It seemed to me that I should take the day off because I wasn't sure I could concentrate very well on some one else's problems with the possibility of leukemia in the back of my brain (even though I knew I did not have it--still). I called the clinic and told them I was sick and taking the day off. 

Dr. Shafeh who was the doctor who had ordered the labs called me to tell me that the more labs had come back (the "flow cytometry" for the doctor crowd) and that it really looked like leukemia. The pathologist called and told me he had arranged a bone marrow biopsy for me at the Norris Cotton Cancer Center. Terry talks about going to his studio that morning, and having me call him partway there to tell him the news. On the way there, it was a normal day, on the way back, the earth had shifted.

I think that is enough for one day; I'll tell the rest probably tomorrow unless something interesting to tell you about happens between now and then.

I hope you are having a nice Saturday. I am.