The first follow up

So, I had my first post-treatment leukemia follow up last week. It was also my first appointment without John. It is all very weird.
You may recall, my labs were slightly off, as usual, a couple weeks ago. I therefore repeated them with Dr. Bengtson, my stand in for John, and guess what! They're still slightly, but not so quitely abnormal. Lather, rinse, repeat. We're rechecking in two more weeks.
It was odd seeing some one new. I had only seen her one single day of all the days I was in the hospital so we hardly knew each other. She asked me lots of getting to know you questions, like my kids' names and ages and what Terry does for work and where I went to med school. We reviewed my treatment. It is funny to me that I cannot really remember exactly when I was in the hospital. OK, I am not even sure about the months that I had neutropenic fevers in. I am positive they were both in the fall, but I cannot do better than that. It seems funny to me that I have lost track of some big details. I remember what bacteria I grew, however and its resistance pattern, my echo and CT results so I guess I remember the important stuff. We talked about how in people who are prone to anxiety/depression (such as moi), the period immediately following treatment is often the hardest time (this will get a separate post). We discussed my labs. We planned for more labs in two weeks. I liked her and am happy and feel confident in her care. She will be a nice stand in for John.

Here's a picture of Maggie snuggled up with me. I was a stand in for Emily who was at college when that picture was taken. We are all thrilled Emily's back for the summer now.

I am thankful my whole family is safe and sound and easily accessible for me. I hope it stays that way for me and is that way for you, too.

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 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.

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.

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.