Sunday, April 28, 2013

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.

Sunday, April 21, 2013

Day 259 - an unpleasant surprise

Terry had an interesting experience recently. He was at an award ceremony recently which was having AV problems. One of the speakers announced that before the next category, they would pause to remember those members of their community who had died in the previous year. Then, instead of showing the intended pictures of recently deceased people, they showed the pictures of the nominees for the next award. I wonder how it felt to be at a party, hoping maybe to win an award and instead to get a clear reminder of your mortality. Because, of course, one day their picture really will be up there because they're being remembered. The juxtaposition of hope that you will win an award and reminder that you're going to die one day must have been especially jarring. I hope the person whose picture was shown had already given some thought to their mortality to maybe take the edge off the reminder. I can think of patients I have seen in the past who would find this idea that they actually will die at some point to be novel.
I cannot recall if I mentioned that this week is to be my first official follow up appointment for the leukemia as my last leukemia appointment was my last official treatment appointment where we finalized that I was done with treatment. John sent me email that he was going to be away from the hospital unexpectedly and that some one else was going to be seeing me. I am sure you do not find it surprising that I replied that unless he was going to be out a long time, I'd wait for him. I told him that he's my hematologist and that we're not interchangable cogs. I wanted to see *him*. He seemed surprised, but pleased. It gave me a chance to reflect on the doctor-patient relationship. AML follow up is pretty easy: look at the results of a lab test and ask a few questions about energy, bleeding, bruising, etc. If the answers are abnormal, it gets tricky of course, but if they're normal, it's an easy visit. If it's normal, it will probably take ten - fifteen minutes. I will be driving one and a half hours to get to this appointment. John offered me at one point that I could do it in Manch or even by phone with him and I feel it is worth taking a half day off from work to do it with him and in person. Why is this?
A part of why I'm willing to drive three hours for a short appointment is that John represents safety to me. I trust him and I feel confident that he will think hard about my labs and will notice even a subtle abnormality. Another reason is that we have a history of him taking good care of me and this is the  appointment where I will be transitioning from a person whose leukemia is being treated to a person who worries that everything out of the ordinary signals a return of the leukemia. It will be nice to have someone who I have a relatively long successful history with.
This group of pansy relatives in my front yard is nearly immortal as this is its third year returning. They're not supposed to do that, but they haven't gotten the memo or perhaps they can't read. They're so beautiful and cute. I'm glad to see them every year.
I am thankful for the return of spring. I am hopeful that the natural world will continue to be beautiful and resilient.

Tuesday, April 16, 2013

Day 254 - may we remember

I wish I could write in detail about how being a patient has changed how I'm a doctor, but I feel that to do so even with details changed would be betraying patient trust and information. I can tell you that I have had the experience of making what seem to me to be "run of the mill" empathetic statements and have had people look up at me surprised, like they really are struck by how insightful something I said was. I do not recall this happening before I had leukemia. On the other hand, it never seems to me that my statements are all that insightful--either before or after the leukemia. One of the statements that seemed to really work for a patient was something about how common side effects were and having to decide if the benefits of the medication (to treat the side effects of the treatment) were worth the side effects (of the med to treat the side effects of another med). I'm not sure if there was something about the echoing of the side effects of the side effect treatment that got into my patient's head or what, but all of a sudden, he warmed to me and looked like I had just said something that made everything fall into place for him. Seemed to me it was nothing special and nothing I wouldn't have said nine months ago. Maybe I'm just more on the lookout for it and recognize it when something I happen to say really clicks for a patient. Or perhaps all the writing I've been doing has made me more eloquent as a speaker. On the other hand, it could be random chance, but I'll take it as it always feels nice to feel like I've really connected with a patient or have gotten to be lucky enough to say something that really makes a difference for someone.
Maybe six or eight years ago, when I was in Exeter, a pediatrician said that sometimes parents will come up to him and tell him that they have always remembered that thing he said to them when their college student was a baby. He realized that they have taken something he said twenty years ago on a normal day when they were one of thirty patients he was seeing and it wasn't anything special he said and they have treasured it all these years. It made him think about how special what we do is and to remember that you never know when the moment that can change someone's life is going to happen.

I am so grateful for having this kind of a job. I am hopeful that I will always see it this way and that everyone with whatever sort of job they have, will feel that way about what they do, too. It's really kind of sacred in a way that we get to interact with each other all the time. May we keep that in mind.

Sunday, April 14, 2013

Day 252 - Sunday in Amherst

I woke up earlier than I thought polite to call Emily so I went downstairs at the B&B and talked with my fellow guests, a couple from Boston. He is a high school teacher and she is a librarian at the Harvard School of Public Health. She gave me the scoop on what librarians do; turns out there is a lot more to it than working in libraries. A lot of libarians archive things and some work as historians almost, trying to find interesting things in the archives of organizations. There is a thing where librarians help companies and organizations (like a school or a department of a school) figure out how long to keep which sorts of documents. She said she goes into professors' offices with them and says "Let's go through that file cabinet where you have just been stuffing everything for the past forty five years you've worked here and see what's there." She will take a lot of the stuff there and archive it so it can be found again and will tell the professor that it will be kept confidential for 50 to 80 years (depending on the nature of it) and then it will be available to researchers. Cool. I also learned that in order to work at the UN, you have to know both English and French. It was very interesting to chat with them and sort of a relief that I wasn't the person at the table with the most interesting job.
Later, Emily and I had breakfast at the Black Sheep, including live music from an Americana type band with a banjo, bass, fiddle, trombone, guitar, harmonica and drum set. They played what I think of as folk-blues while we ate croissants, drank coffee, admired cute babies and chatted. Then to FroYo World where Emily spends a lot of time so it was important for me to see and check it out. We chatted some more, stalled as long as we could and then I headed home, sad and excitedly awaiting early May when she returns to home for a few months.
Mountains in the distance
I am grateful for a safe and fun trip. I am hopeful for the same for Emily in a month and for all of us always.

Day 251 - Saturday in Amherst

Because of Patriot's Day (Emily says it's the holiday they made up so no one has to drive through the Boston Marathon to get to work), Emily has Monday off and an extra weekend day for homework. Thus, I got to visit her this weekend!
Amherst is a very pretty town with some good bakeries and U Mass is a nice college. I left home on Saturday, later than I expected because everything takes longer than you expect it to. When I got to Amherst, I was ready for lunch which we had at the most excellent Black Sheep deli. If you ever are within a half hour's drive of it, make the trip. The deserts are nice; there's a 3 or 4 desert vegan selection, but no gluten free option sadly. The sandwiches are good (again no gluten free option). The coffee is fine; there's good soup and often live music. We sat in and had a sandwich and desert then went to Emily's room and chatted for a while.
Eventually we went to my B&B, The Knolls, and checked in. It is a funny place, run by a man and woman who do a very nice job, but seem somewhat rickety. I don't know if you can see from this picture how huge the front yard is, but it looks like a subdivision could be built in the front yard and another two or three in the back yard. You can see the house under the trees in the middle if you go in three or four times. I'd stay there again although it's kind of far from Amherst. Some of us are not so good at planning and it was the closest B&B with an open room I could find.
After checking in and marvelling at the grounds, Emily and I went to Northampton and walked around for a while. I always forget what it's like to be in a city at night--even a small city. People walk around and restaurants, bars and shops are open. It's not at all like Exeter where only the two ice cream shops are open after dark. There are several galleries in Northampton and a few little stores selling interesting, expensive, gifty-type things. There were several high end resale shops.

We had dinner at a Noodle cafe and then returned to the B&B to do a crossword puzzle. It was great to see her.
I am grateful that I am able to spend time with Emily and hopeful I can do a lot more crossword puzzles with her in the future. I hope you can have fun with those you love, too.

Day 250 - worries

Once again, I am astonished at how long it's been since I updated here. The leukemia news is fairly sparse although I have begun my countdown to my next visit with John, my *first* followup visit. Mostly I'm just looking forward to seeing him and happy to be three months out. Every now and again, especially when I am supposed to be sleeping and the house is quiet and dark, I get anxious about it. Something a little out of the ordinary happens: my back hurts, I bleed when I floss my teeth and I immediately think: it's back. Fortunately, the next day my back stops hurting and I don't bleed when I floss and things are all better. Until the next time.
I worry about my brain. I feel that I am not quite as quick witted as before the chemo and also my filter is not quite as effective as it used to be and I seem to say things occassionally that I don't think I would have said pre-leukemia. Is this a side effect of the chemo? the leukemia? the start of a new process? or maybe just that I'm out of practice for thinking the way one thinks at work since I didn't do it for six months. Everyone I've asked tells me they do not see any difference so that either means that it's too subtle for them to notice or it's not there. I've decided that since I had chemo and recovery for 6 or 7 months, I will expect it to take at least 6 or 7 months to get back to normal. I'll try really hard not to worry until September.
A writer that I like very much, David Hilfiker, has publicly announced he has Alzheimer disease. Of course, I worry that this blog will be turning into "No Goodbye to Early Onset Alzheimer Disease."  I take great comfort from Hilfiker's statement that the time after his diagnosis has been one of the happiest periods of his life.
Apropos nothing, the bridge from Portsmouth to Kittery under construction

I am thankful that I have a disease I can say goodbye to. I am hopeful that all of our brains continue to be OK.

Tuesday, April 9, 2013

Day 247 - the time, it passes

Holy cow, here it is like 4 days later and I haven't updated you on the exciting developments in my life. OK, now we're done. Work is good; we're in a period with a lot of palliative care consults at CMC right now so we're quite the hopping group. We're not quite too busy, but it's better to be too busy than not busy enough and we may soon be too busy. Other parts of my work are going well, too. Eva and I will be doing a skit about ways clinicians can approach POLST with patients. We're trying to model both good and bad behavior and doing it on Thursday. I'll try to rein in my stage fright. Eva is going to be the health care provider which is the much harder part. I let her have first choice and she thought it would be more fun to be the clinician.
I am so delighted about the weather; I bought a 6 pack of pansies today. I can't wait to put them in the ground. Perhaps they will also be perennial pansies like many of the ones in our garden? I also went for a little run, but my phone cannot survive without ringing for more than 30 minutes so I had to stop mid-run to sort out a prescription debacle. I always feel very stupid when someone calls me and I am panting "Yes, this is Dr. Braun; why do you doubt it?" Once I had an asthma attack while talking with a patient's son and coughed every fourth word or so for our whole conversation. What we were talking about was important and it did give him a good story for his next dinner party.
Terry and the kids are doing well. I'm going to visit Emily next weekend. My port site's steristrips are finally off. Really, life could not be better. Well, except for one thing: diarrhea dog.

Guilty of eating forest garbage and getting intestinal infections over and over again.
I am grateful for metronidazole. I am hopeful that it will work as well as it always has before. For you, I am hopeful that you never pick up any of Maggie's nasty habits.

Saturday, April 6, 2013

Day 293/4 - sneak attack of the memories

I am perfectly happy to talk about my leukemia with other people. I don't mind being asked questions or telling people parts of the story, but sometimes I get surprised and remember my leukemia when I'm not expecting and wow! it kind of packs a punch then. Let me tell you the story.

The first one happened when I got an email from the man at Dartmouth who runs the writing group, inviting me to the next series. I was happy to hear from him; I enjoyed the writing group and like him. I was happily reading it and thinking that was fun; I even went to one of the groups when I was in the hospital and right about at the words "I was in the hospital," part of my brain continued by momentum to finish the thought, feeling happy, and part of my brain felt like it completely froze up and went right to being in the conference room when I was in the hospital and went off to the writing group. It was the weirdest feeling and I suddenly felt very anxious. It passed in a few minutes.

The other time it happened was one day driving into the Hospice House driveway, I had to park on the side and thought to myself, again happily, it is nice to see so many cars here; it reminds me of last summer [freeze] when there were all the volunteer events here. This one passed faster.

It is such an odd feeling. It really feels like part of my brain is in happy thought and part of my brain is like a deer in the headlights. People who are grieving talk about how the grief can surprise them, like when they see the first raspberries of the year and their loved one loved raspberries. It seems like that a bit. It also makes me think of what people say about quitting smoking; that you don't just quit once, but you quit in every single situation that you used to associate with smoking. Maybe I need to normalize (I think that's the right word) the leukemia in every situation.

In non-leukemia related news, I went for my second run of the season on Thursday. Isn't this beautiful?
I'm thankful for how beautiful it is here. I'm hopeful for more and more normalization of my leukemia for me and more normalization of whatever painful things you have going on, too.

Thursday, April 4, 2013

Day 292 - what I saw this morning

This has nothing to do with leukemia and, fortunately for a cute young woman named Maja, nothing to do with goodbyes either, but is an interesting story. This was not my favorite morning. I had therapy and got on the expressway in the wrong direction (on autopilot I was going to work) and took a few miles to figure it out so I had to turn around and then I didn't have time to buy coffee or put gas in the car so I was running super late and you can imagine how happy I was. Then, the insurance people called to tell me that actually there still is some problem with *their* records which they cannot fix until the ambulance company sends them a copy of the bill because and then she started speaking in a lost language of the people of farthest Siberia. She was very nice and assured me that they wouldn't take me to collections for what is essentially their bookkeeping error and I was in the midst of saying "thank you" when I witnessed an accident.
What happened is I was on 101 headed west and there was a slow moving car in the right lane followed by an oil/gas truck. Not one of the residential ones that deliver oil to people's houses, but one that delivers gas to gas stations. So, a big one. There were four cars ahead of me and the first one was going just marginally faster than the truck so it was taking f-o-r-e-v-e-r to pass the slow going car just ahead of the truck. I thought I did not want to be stuck behind the truck if it pulled into the left lane so I pulled up to close the gap between me and the car ahead of me. The car ahead of me was about even with the back of the truck and all of them were kind of packed in in the way drivers get when someone is going slowly in the fast lane. The truck put on its turn signal and no one made a move to let the truck in. It turned its turn signal off and a few seconds passed, then it turned it back on. I said to myself "Trouble" and pulled back a few car lengths. When no one slowed down to let it in, it started to drift over into the line of cars next to it. It appeared as though it was trying to put its nose into the space ahead of the SUV it ultimately hit. Then it drifted back to the left, then it came over for real and hit the side of an SUV. We were all going around 65-70. It just hit her car and realized what happened and then pulled back into the right lane. I stopped. The truck stopped. "I didn't see you!" he said. The person he hit was a 25 or so year old woman. I gave her my cell phone number, checked that she was ok and headed off to work (now even later). I am hoping she calls me because this is a driver who should not be on the road IMHO and I hope there is a police report. Even if her SUV was not there, there was not enough space for him to be in the left lane between the other cars that were there. And, if you cannot see an SUV, something is wrong with your looking apparatus. Just saying.
It's a good thing I am interested in things because I cannot drive to work evidently without something interesting happening. I had to hang up on the insurance woman, "O, my God, gotta go, it's an accident!" so I still don't know what I am supposed to do to correct their accounting error. I keep thinking about how easily it could have had a horrible ending for that young woman who seemed only a little bit older than my own daughter.
So, let's look at a happy picture, OK?
The daffodils in my front yard with Ellie's cast iron garden fairy.
About the insurance thing, I keep thinking that this is the only problem I have had in over $200,000 worth of treatment. I cannot believe how lucky I am. Better believe I am deeply grateful. I am also thankful that I did not witness a fireball on the expressway this morning. As for hopes, I hope that driver uses this near miss as an opportunity to change his behavior so he doesn't cause a real disaster in the future. For you, safe travels even if it's just a little ways.

Wednesday, April 3, 2013

Day 291 - nothing but normal

Ellie was stalling at bedtime tonight by trying to engage Terry and me in talking about my hair. I realized it was the third conversation I had had today about my hair. Losing my hair did not turn out to be a terrible experience for me probably because I knew from the beginning it was going to happen and probably especially since I got it cut fairly short just before I went into the hospital for my month long stay so that I didn't lose my hair to the leukemia. I think taking control of that was really helpful and meaningful for me. I wonder if there are ways people can take control of other physical parts of the cancer experience. I'm actually sort of surprised that getting your hair cut short before you start chemo that will make your hair fall out is not standard advice.  I know people often cut their hair after it starts to fall out, but doing it when there was nothing amiss made me feel like I was a little bit in charge. The idea of sitting around and waiting for two feet of hair to fall out in clumps is not very appealing to me. Suggestions for patients if I get to see them early enough in the palliative care clinic.

It is funny though, how often people mention my hair, usually to tell me it looks nice short (thank you; I agree!) I'm not sure if it's because they want to talk about the cancer experience some and can't think of another easy way to start. Or maybe people just like my hair shorter. I will have to try experimenting with other ways to answer that make it clear we can talk about stuff deeper than my hair. What might such an answer be? Thank you; I'm keeping it short to help me remember the cancer experience? Not sure.

I am grateful to have growing hair. I am hopeful we all have lots of haircuts in our futures.

Tuesday, April 2, 2013

Day 290 - deposed

I told our nurse practitioner student today that I feel something interesting is always happening in my life. Today was no exception; I did my deposition. I had never been deposed before and that was interesting. The county prosecutor and the public defender and the court stenographer (who recorded everything and will transcribe it probably from the comfort of her own home--nary a stenograph in sight) were there with me. The public defender asked me a whole bunch of questions, many of which were highly predictable, some of which were not. The situation is that I examined a patient after she was assaulted and the person who did it has been found and is on trial for it. My piece is really straight forward; is this your note? when did you see the patient? what did she tell you? then what? etc. Some of it was somewhat surprising to me, but probably shouldn't have been: what did you mean by [body part]? (he brought pictures from the internet and asked me if the circle was on the [body part]) He asked a lot of questions about could I tell how/when the wounds had been made? (nope, not my field of expertise) It was nerve wracking to not be able to figure out where he was going all the time. I also wished my note had been better, but there is nothing for that at this point. Now, I've had that experience and am hopeful that I never have to be deposed on my own behalf. Once we had a patient involved in a lawsuit at the Hospice House. I was not there the day they came with their stenographers and team of lawyers to depose him. He died soon after, but it had been an important life goal for him to do the deposition. It must have been exhausting.
Can you see the little bit of purple in the lower left above the grass stem? That is a pansy that made it through the winter under all the snow for an early start. We really got our money's worth out of that plant; this is its third year back. Pansies are *supposed* to be perennial.
I am thankful for being so naive about the legal system and hopeful that I can remain so. For you, I wish the same.

Monday, April 1, 2013

Day 289 - it's a big circle

Now that it's getting around to nine months since I was diagnosed, I am starting to do things that I associate with my diagnosis. I remember when I was being induced (that is doctor talk for the month long admission that started the treatment off), I was being a tester for the ABIM board exam. They asked again this year and I said 'yes.' I remember the doctors (especially the residents) thinking it was funny that I was doing that test last year while I was getting chemo. I must admit I thought it was pretty funny too. I did a couple of the questions tonight and it was very odd because I remember clearly the last time I did those questions was in room thirteen (113,  think). As I reflected on that, I realized that everyone is a year further along in their lives. My cute little intern who saw me as her first patient of her first day in residency is almost a second year. My fabulous third years who were so kind and knowlegeable are almost graduated. I feel sort of like when you see your friend's kids that you haven't seen in years and you expect them to still be little.
I am getting close to the time I have to really panic about boards, too. I could have taken them last year, but really did not have the heart, stomach or bone marrow to do the necessary studying. I can't leave it to the last year possible because if I fail, I can't work. I guess I better get planning how I'm going to study; I have to pass the test by the end of 2015.

Here is a picture of the windows weaving hanging next to a painting Ellie did a while ago. I am very pleased with how it came out. I don't know if you can tell, but the colors going up and down are crossed against the same colors going left to right so that the top row is blue and the left most column is blue, the next column is white, then blue-green, then pink, etc. The diagonal from the topleft to the bottomright is the "pure" colors where both the warp and weft are the same. I really love it. I hope you like it too. My loom is back together, but I have done zip zero weaving in weeks.
I am thankful for the chance to do another year's worth of everything. I am hopeful for lots more years and the same for you.