Death's fashion moment

It's not just us palliative care folks who think a lot about aging and death these days. "Bucket list" is a thing that everyone knows about, movies like "The Fault in Our Stars" are popular and lots of famous people are dying. I've been thinking that our society has had several decades with less than an average amount of death and is now headed for some time with more.

Something ocean's waves something something life something very deep.  

The way I see it, the folks coming of age around the time of WWII, who have been called "the greatest generation" popularly, have ended up with a very happy intersection of events: growing old with improvement in health care and growing up without serious environmental degradation. We have figured out a lot of key things about heart failure, strokes and cancer in the past 20-30 years so anyone lucky enough to make it to the 1990's has had the benefit of catheter driven cardiology, a daily aspirin, less toxic and more effective cancer therapies, beta blockers and statins. In the 1990's, people coming of age at the end of WWII were around 65, just the perfect age to get the advantages of those advances. These advances caused folks who otherwise might have died to survive their heart attack or their early breast cancer that would not have been survivable a generation before. Thus they were more likely to live past 65 and into their next decades. Postponing of death cannot go on indefintely, however. None of us lives forever and the human body eventually wears out. Folks born in the 1920s and 1930 are in their mid-80's now and are getting to the point where even the best science runs out of rabbits in the hat. Essentially, I think there are a lot of people in their 80's who are still alive who probably would not have lived to their 80's if they had lived their lives out twenty years earlier, but they are getting to the point where there are no more tricks to keep them going. Thus there is an uptick in deaths among the "greatest generation" set.

I think there is also starting to be an increase in deaths among the boomer set as well. The oldest boomers are in their late 60's and are approaching the age when people start dying. It seems that perhaps because of a combination of increased smoking rates and environmental degradation, the boomers are going to be dying a little younger than their parents, thus leading to an uptick in death rate among the boomer set.

These two trends colliding has lead, it seems to me, to an increase in the rate of dying. I don't think it's our imagination; we're busier. I think our society will be thinking more about death for the next twenty years because we will all be experiencing a lot more death than we have for the previous twenty years. Hospice is such good work; it's always a good time to be in it, but it might be a particularly good time to be in it. I think we will also notice a huge uptick in the amount of popular culture that will be devoted to thinking about death and dying.

May we all live long and prosper.

How long the road?

When I was in the hospital, some one told me that if I had an auto-transplant, that it would take about six months to get back to normal and if I had an allo-transplant, that it would take about a year to get back to normal. Fortunately, I needed no transplant of any variety, but it is safe to say that I did not felt back to normal six or even twelve months out from treatment. I am now about sixteen months out and I think I started feeling normal at about fifteen months. I say "I think," because feeling normal does not arrive with an announcement; about one month ago is my best memory of it.

If someone was going to recover quickly from their leukemia, you would expect it to be me. I was pretty young (47-48 years old) and in good shape physically (I ran a five K the weekend before my diagnosis--I was slow, but still). I had lots of resources, support and help. It seems highly unlikely that most patients are going to recover from a larger intervention than I had more quickly than I did. I mentioned this to John at my last visit and he said that it didn't surprise him--that he would have guessed that I went back to normal about sixteen months ago when I went back to work. We talked about the questions he asks usually and what different questions might elicit that information (if he wanted it). He told me he would change his standard thing that he says to patients because he thinks it's probably not true. I certainly can attest to the fact that it's not useful.

Budapest looking its normal gorgeous self, hopefully feeling it, too.

So, now that I'm back to normal what does it look like? Lots of different things, but today it looks like me running five miles in under an hour. I am so happy because it is the best I've run since before my leukemia.

May we all be the selves we would like to be--our normal self or not.

Fiddle playing

This winter, I have been playing fiddle at least every other week in an ensemble and practicing several times a week by myself. The ensemble ultimately ended up with 60 (!) people in it from all over the state, including me. There are five practice sites and after we all learn the music in our local groups we get together and play three concerts. It was so much fun! Below you could see a couple of videos Terry took.

Talking followed by a little playing
If you just want to hear the music and don't want to watch me looking uncomfortable while Ellen chats, skip to about 46 seconds.
A fragent of lady be good

The actual soloist is not shown on the video until the very end, but you can hear him, he sounds great and is, like 15 years old. I'm somewhere in the middle in the back. I think you can see the side of my head briefly.

Playing again has been a real joy in my recent life. I hope I can play more this summer and join the ensemble again in the winter. Please enjoy these little clips.

May we all find things that bring us joy. May we figure out how to include more of them in our lives.

One year

The path ahead. Taken in New Foundland by me last month.

When I read the leukemia literature, it talks about the probability of events (you know, "events") at one year, two years, etc. It was not always clear if it was one year post diagnosis or post treatment so I asked Dr Bengtson and she said it was usually measured post treatment end. Since then, I've been waiting patiently to be one year post treatment and now, it can be said. It's a little anti-climatic, but there you go: I am now one year post-treatment. Remember all that fun: the fevers, the missing hair, the platelets (ok, the missing platelets), the fragility, weakness and confusion? All of it, over a year gone.

In other more interesting news, Terry has his open studio today and tomorrow so if you have a hankering to go to Kittery, visit him too.

May we have long, beautiful paths ahead.

More with the hair

My birthday bouquet. I'm another year older. Yeah, me!

A tiny bird that got confused in our garage resting in Tommie's hand before flying off

OK, you're tired of hearing about my hair, but here's something funny. You know how when you wash your hair, a few strands come out and go down the drain? Well, that hasn't been happening since I regrew my hair. I didn't even notice the constant low level hair loss was missing until it started back up again earlier this week. The loss was missing and has been found. Another little step closer to normal.

Thankful for them all and hopeful for more.

how large?

The hills behind Castle Hill in Budapest are large.

In the previous post, I mentioned having large stretches of time where my leukemia is not relevant to the conversation. That got me wondering: exactly how large are these stretches of time? How long do I go between mentions of my leukemia in conversation on a day to day basis and how long do I go between telling someone new about my leukemia?

For the first question, replaying my day in my (somewhat foggy, post-chemo) brain, I come up with the following times leukemia came up implicitly or explicitly during the workday:
1. I brought my old port into the office and showed it to my nurse (long story involving cleaning out the place it used to be kept)
2. I was sitting in the doctor's dictation room at the hospital (it is a very tiny room where we doctors shoe horn in to do our charting) and one of the other doctors is a few months older than me. We talked about how we are both turning fifty next year and I mentioned how pleased I am to be another year older. Further conversation ensued about mortality and my experiences.
3. One of the nurses who knew me pre-leukemia told me how much she likes my curls.
4. I explained ports and PICCs to a patient who may need long term IV access. Everyone in the room but the patient and their family knew that I knew exactly what I was talking about
5. A patient mentioned that her hair was darker now since having chemo and wondered if it usually comes in darker. "Yes, it does," I answered, "and curlier." She did not know that I and my nurse both knew the answer to this question was personal.

There were certainly many other times when I thought about it or touched on the "I had leukemia" factoid during the day and I bet there were other times someone made reference to it during the day that I just don't remember because I cannot recall everything that goes through my head in a day (thank heavens). As I go through my day tomorrow, I think I will try to be aware of when I think of the leukemia or when someone says something that alludes to it and see what I get. Anybody want to guess?

another milestone

Last week, Terry and I were getting thai take out and the person in line behind me looked familiar. Because I'm a doofus (just ask my kids), I introduced myself and said "I know you; can't recall your name; I bet you're an Exeter doc." In fact, he was and we reminisced about Exeter when I was there, various events that had transpired, how things were different and the whole hep C story. We told him about our new house (which we bought from another former Exeter doc) and talked about the Manchester hospital scene. After we said our goodbyes, I realized that we had not discussed AML at all. It was a milestone: catching someone up to date on my recent life that did not include "I don't know if you heard; I had leukemia last year." Kind of a nice milestone to have, as though there is a possibility of having a life where leukemia is just a footnote.

The day described above is coming, just like the snow pictured here.

I am hopeful for more days where my leukemia is not relevant to the conversation and thankful that I have large stretches of time where it is not.

A uncomposed photo and a tiny announcement

Fireworks two years ago.

A really happy thing is that it seems to be becoming less of a big deal for me when I get labs. Two days ago I had another set and while my marrow is not the most robust marrow you've ever met, it does not seem to have any signs of leukemia. As one of my oncology pals said, "Don't underestimate how beat up your marrow is from the chemo." 

 

 

It makes a difference. Or not.

I had an interesting experience recently that was only marginally linked to leukemia, but it's my blog so I can put whatever I want up.

Recently, it seemed that a patient had a turning point after I said to the family that if loving someone alot could keep them here, their loved one would not die. They said, "I don't want Sidney to die" and I said, "If loving someone a lot could keep them here, s/he would not die." I'm not quite sure why that was the response I made out of the hundreds of potential responses to their statement. It seemed to help (maybe not; maybe I'm just being self congratulatory) and I was glad I said it.

It made me think of the last time I spoke a similar thought--the first day of my chemo. Eva and John had come to hang out with me and distract me while what I thought was my strongest defense mechanism (denial) was being destroyed. How can you deny that you have cancer when some one in a space suit is advancing on you with a vial of bright red liquid? I was worried about what might happen/how I might feel and react when she showed up with it so I asked my kind friend and her husband to distract me. I ended up telling John and Eva my story and it turned out to be an ideal strategy for me. I remember opening the story by telling them that because my mother died when I was seven, I had always known that it didn't matter how much you loved someone or how much you needed them, they could still die. What I said to my patient's family is a kinder version of that. It may be that that was the unspoken thought they were having in "I don't want Sidney to die" and I recognized it and was able to respond to it. At any rate, I felt lucky to have been there.

People talk about doctors using their life experience as a lens through which we view the experiences of patients. I think this is an example of that.

I am grateful that my loved ones are around me and hopeful for a long continuation of that.

How will I know I'm back to normal?

You may recall a million days ago when I was in the hospital still I asked myself how I would know I was out of the hospital. The answer was that I would be at my favorite restaurant with Terry. Of all the hundreds of moments of experiences that could mean normal that was the one I seized on and it felt iconic for me, so much so that I really wanted my counts to become normal enough that I could eat at a restaurant, way out of proportion to how much I actually wanted to eat and not because I was craving any particular meal they made either. The experience of sitting in their restaurant with Terry had just become a shorthand in my brain for "normal."

I had a similar experience with the return to work. What became equated with "back to normal" in my brain was seeing patients in clinic. I was anxious for everything to return to normal, to work full hours, to do my regular job, etc., but this was more, a special identification of seeing clinic patients with being back to normal. I noticed that I was really desperate to see patients in clinic and any delay or setback felt like a huge personal affront and the tiniest things would go wrong and I would feel the clinic would never get started and become distressed. I began to really start tying myself in knots to try to see clinic patients. Eventually, I realized that the reason I was doing it was that clinic = normal and I wanted so much for things--for me--to be normal. I wish I had figured out sooner that this was a case where a cigar was not just a cigar and I might have been able to modulate my behavior more normally. I could have quenched the desire to see clinic patients perhaps a little and resulted perhaps in smaller self-knots. (O, the irony, in trying to make things normal, I behaved somewhat abnormally.)

The mind gets some really funny ideas in its head. I am grateful for figuring that one out and hopeful that I figure out my next episode of non-rational thinking sooner.

Normal labs

Here is a normal lab:

Saving her energy for her next round of ball chasing.

I also had a whole set of normal labs today in Lebanon. Yeah for normal labs! I'll take my marrow outside and snuffle around in the dead leaves because that is what normal labs do.

There are a bunch of things from today's visit that I am chewing on that may show up here, but we'll start with the fatigue. I have been a little bit more tired than I expect to be recently and I asked about it. My John stand-in said that in her experience, people younger than me (like in their 20's) get their pre-leukemia energy back and people older than me (like 60's) get back about 80% of it. She said she felt she couldn't really predict if I would be more like a 20 or a 60 year old. I sure feel more like a 60 year old.

I reminded her that at one point, John had talked about a transplant of my own filtered stem cells (an autologous stem cell transplant) and that some one had told me that took about six months to get back to normal after. She said that was not what she had observed that it took way longer and anyway the chemo I had was about as bruising as an auto stem cell transplant. This was a surprise to me because since I didn't have that hard a time with it, I assumed it was actually fairly wimpy chemo (I imagined it as "chemo lite"). Hunh. I guess not.

It seems I earned my fatigue.

I am thankful that my labs are normal and hopeful that my energy becomes so.

Falling

Lots of different kinds of people seem to read this blog. Some are my doctor friends, many of whom know way more about everything AML related than I do. Some seem to be people in the former Soviet Union who are trying to learn English (my grammar is pretty good, but sometimes I deliberately use non-standard constructions, so don't rely on it). Some are long time friends and are smart people but don't know their cerebellum from their cerebrum, so we'll start there for today. My medical friends, just skim the next paragraph or two until we get back to the leukemia story.
So, let's talk about the cerebellum today. The cerebellum (Sara Bellum) is the part of your brain that is in the back and bottom. When you cradle the back of your head with a single hand, I think of that as surrounding your cerebellum. They turn out to be fairly vital pieces of our brains (there's not a lot of wasted real estate in there!) connected with motion and how we move in and through the world. What they told me in med school (and, remember, I did not graduate in the top quarter of my class or even the top third) is something like this: there seems to be a movement generator in the brain that initiates brain impulses for useless movement and the job of the cerebellum is to pare those down to just the useful ones. They say commonly that the cerebellum takes away useless movement the way that Michelangelo took away useless marble. OK, not all that helpful, but it's all I got. Google probably has a better explanation.
Alternatively, once in my career, I saw a patient with severe cerebellar failure, due to a weird auto-immune thing. His sense of balance was so impaired that he was nauseous just rolling over in bed; he could not sit because he couldn't balance himself; if he reached for something, he would overshoot and then when he tried to correct the overshooting, would overshoot in a different direction and his speech was very difficult to understand. He was confined to a bed essentially, but had normal thinking and feeling. This is not something one can learn to get better at; I was able to help a bit with meds, but basically, he was going to have to live in a nursing home in bed forever. If rolling over made him nauseous, you can imagine what the ambulance ride from the hospital to the nursing home was like for him. (the video is not my patient and actually shows mild dysfunction)
Additionally, people with severe cerebellar dysfunction often cannot control their eye movements. To some extent, your visual processing apparatus in your cerebral hemispheres can accommodate to this.

(warning: mention of alcohol below)
Alternatively, again, alcohol intoxication is a different kind of cerebellar toxicity. Think of a very drunk person staggering around or attempting to touch their nose.
(end warning)

One of the main side effects of the chemo for AML is "cerebellar toxicity." I did not give it a whole lot of thought at the time; if forced to choose between incoordinated physical actions and AML, I would have said "Please give me the highest dose possible; I'll put up with the side effects." They test patients' cerebellum before and after giving the dose to make sure nothing has gone wrong and to make sure the next dose doesn't need to be adjusted and I never showed any signs of anything going wrong.

Interestingly, however, I have noticed some subtle differences. (warning: more discussion of alcohol) I have never been a heavy drinker; I frequently will drink two glasses of wine at a sitting, but more than that and I am no longer coordinated and I don't like the loss of thinking ability that comes with more than two drinks for me. However, I would say over the several decades I've been exposed to alcohol, I've had more than two drinks maybe two dozen times so I have a database of how my body responds to alcohol that is fairly consistent. After dose number two, we went out to dinner with a friend and I had one glass of wine. I noticed when we left that I was thinking fine, but stumbling on the uneven flagstones. Usually if I were stumbling on the flagstones, I would also not be thinking well. Hmm. A little bit of cerebellar toxicity. No one asked and I did not want anyone to consider reducing my dose so I did not offer this information. (no more alcohol in this post)

Now, six months out (go, me!), I have some new wonderings. Previous to the leukemia, I would guess that I fell about the usual amount for a normal active person, maybe once every few years. Since the leukemia, I have had four falls (listed in order of least likely to be related to chemo toxicity to most).
1. late May - Maggie saw a squirrel when she was on leash and pulled me over
2. late May - we were moving and I was carrying something heavy and big down the narrow, uneven stairs at our old house and my foot slipped off a stair and I fell (3 of 4 family members as well as some guests have fallen on those stairs prior to my fall)
3. Oct - I didn't see a step in a darkened parking garage and fell quite spectacularly. Was it that it was dark or that I didn't lift my foot high enough?
4. June, 2013 - I was attempting a somewhat acrobatic movement over the garden fence and failed.
The falls were far enough apart that I didn't consider that I had had a dramatic increase in my falling until the recent one. Random chance? Subtle cerebellar toxicity? Weakness as a result of the huge muscle loss associated with two neutropenic fever episodes? Interesting, whatever it is.

My experience is that questions about falling perhaps should be part of survivorship care. It might be an interesting study to ask people to estimate at the time of diagnosis how many falls they have had in the previous year and then to check up on their one year follow up with where they are. It would be an easy study to do in terms of how much data and how much people would need to change their clinical behavior, but hard in that it would take more than the usual 1 or 2 year med student/resident research cycle. If I get to do survivorship care in my clinic (which I would really really like to), I'll add it to my arsenal.

I am grateful that my most recent fall did not result in anything broken and hopeful that I can continue in personal survivorship.

Anxiety and the end of treatment

There is a nice article in the NYT about anxiety after cancer treatment. Let me tell you about my experiences with anxiety and leukemia.

During treatment, I had some anxiety, but mostly I was so busy with tomorrow we need to check my blood and then we will need to recheck on Thursday and I need to call the disability people today and Ellie needs new shoes for gym and Diane is coming over for coffee this afternoon and ... that I could always distract myself if there was anxiety. I mentioned during the treatment that I thought that the most anxiety provoking part would be after it was done waiting for my first followup; that I thought the silence would be deafening. I was sort of right.

The end of my treatment could only be identified in retrospect (remember I had been thinking I was going to get three cycles and then either a fourth cycle or an auto-transplant and then the plan suddenly changed to three cycles is enough?) and I think that may have had some effect on why my end of treatment anxiety was delayed (or maybe I'm just a little slow). My treatment really ended in December, but the decision that it had ended didn't happen until mid-January and I was already back to work and starting to get more and more engaged by my work. Then Dr. Hill went out and it was time for my first follow up. I was doing more and more in my life: buying a house, starting an outpatient program at Dartmouth, medical directing at the Community Hospice House and CMC and the home team and, by the way, recovering from cancer. I had had a couple of bouts of superficial infections and each of them required the fire drill of checking labs and worrying more or less for six, eight hours until some one gave me the results (or I looked them up myself which I try not to do because I try to be just a regular patient). Around about this time, I began having this free floating sense of anxiety most of the time. The best explanation is you know that feeling when you have to make a phone call you are really not looking forward to ("I'm sorry Mrs. Jones, but I made a mistake and miscalculated..." or something equally awful.)? Well, that feeling just followed me around for a couple of months for no particular reason and sometimes I'd stop and try to figure out why and couldn't ever find a reason, but usually I didn't have the time to spend and would just have to do my day with that feeling hanging over me.

About this time, I had my first follow up with Dr Bengtsen and told her this only to have her say, "O, we see this all the time. This is very common; a lot of people get much more anxious after treatment. I think because they feel they've been watched so carefully all these months and now they're sort of on their own." Gosh, that was helpful. I mean, I knew that, had seen it myself and had predicted something like that, but--still--to have someone say it explicitly was tremendously helpful. Why didn't fifty people say that to me ahead of time? (would it have helped? maybe not, but--still) The whole anxiety thing did not fade away then--that took some meds and a lot more time--but I felt like having her say explicitly to me that this is normal was really helpful even though I already knew it.

My next follow up is July 25th. It seems like usually the week before I find myself waking up at 3 and calculating and perseverating. I wonder if that will decrease as it gets so that I've done followups more and more times.

I am grateful the anxiety has receded. I am hopeful it never has a reason to return.

(P.S. Stuff like this is why I'm interested in survivorship care and why I think palliative care has a lot to offer in survivorship. Sorry for the advertisement.)

A substantial breath of air

We had dinner with some friends on Thursday and talked a bit about the house. It was more outloud reflecting on the subject than I had done since moving in. Perhaps because of that, I seemed to dream about the house and woke in the middle of the night with the dream fresh. In it, I said, "it's less like a house and more like a substantial breath of air." It is actually a really nice description as one of the best things about the house is how airy it is while it is yet very reassuringly substantial (spoken as a true home owner). We're being very happy in it so far.

What I look like in my new computer area. The house accessorizes me well, don't you think?

The swollen eyelid

You may know from real life that since going back to work, I've had a whole rash of little abscesses of various sorts on my nose and lips. I've ignored most of them and they go away on their own, I had one swabbed and took antibiotics for it when it reappeared. It grew MSSA and did not return after a course of (I think) bactrim. I suppose you are not surprised to hear that even though the latest one was still hanging around at two weeks, I didn't do anything about it. I mean, it wasn't getting any worse, so, really, what's the big deal? I did ask my hematologist to set me up with an ENT when I went up for my next appointment, and tried some neosporin on it which seemed to help the other ones go away faster.

This morning when I woke up my nose felt no different than before, but the upper eyelid on that side was swollen and sore and warm. I called my PCP up, explained the situation and got some antibiotics and a set of labs. The labs were ordered because every time I get an infection, doctors will worry that I have it because the leukemia is back and is trashing my immune system. Is the infection an early sign that the leukemia has relapsed? I did the labs at noon and then went to see a hospice patient in their home and went about a normal afternoon for a while longer. Every now and again as I went through my day, I would think "If my leukemia is back, some one else will have to follow up on this patient's medication change" or "if I have to go up to the hospital for another month long re-induction, I will miss how pretty these bushes are." Even just the process of thinking about if what I am doing is a worthwhile thing to be doing on my potentially last day of non-hospitalized summer is a good exercise. It makes for a more poignant than usual day to have a reminder all day long about how fragile the whole of a life is.

Mostly, I feel my life is somewhat secure. I don't see a daily threat usually. I've worked hard and gotten a marketable skill so I feel relatively safe from economic threat. Our town is safe and it's been a long time since someone in my personal life has threatened me physically. My kids are doing well and have friends and activities I approve of so I don't feel at risk through them. I feel that I am paddling along, relatively secure in the portion of the stream of life I live in and then suddenly I round a bend and see that actually the stream meets up with a river and picks up speed and has dizzying eddies and dead trees sticking up everywhere. I look around the part of the river I'm in and see that it is like that here, too; I just hadn't noticed somehow.

Then I got my lab values and they were fine. Not perfect because it will be a few years before my marrow recovers completely from its chemo-battering, but fine in the post-chemo way that they usually are. So, I will follow up on the patient's med changes and be around to admire the bushes through their whole flowering cycle. Unless one of the other hundreds of threats to my life rears up and snags me. I better get enjoying those flowers and raspberries.

last day of the first year

Depending on exactly when you place my diagnosis: June 14 when my labs were abnormal and they said I might have leukemia or June 15 when I had my bone marrow biopsy, they told me I did have leukemia and bundled me up to Lebanon, either today or tomorrow is the last day of my first year of leukemia.
Last year, on June 14, I was at CMC's cancer committee in the morning with the pathologist who made the call on my lab work, the oncologist who did my bone marrow biopsy, etc. This morning, I was at cancer committee again: same players. Making it even more surreal, I had not been to a cancer committee in the interim. Last time I went, I got diagnosed with leukemia. Who knows what they'll diagnose me with this time! Fortunately, it seems nothing.
This morning, in fact, I got pulled out of cancer committee after about fifteen minutes to attend to a patient at the hospice house who was having a very bad day so I did not get the full experience of how weird it all was to be doing one of the activities I most strongly associate with my diagnosis. We only meet quarterly so I'll have to wait until September to have that experience.

Moth eaten hair from a little more than a year ago. I didn't seem to have a picture related to tumor board to post.

I am grateful for all the help I have had this past year. I am hopeful to be able to pass on the favor over the coming years. Thank you.

Come here often?

Clearly, I don't. I really haven't had anything to say for a while, but the synchronicity of life has urged me back here so here I am. And you are, too. Thank you.

So, to catch you up on the factual news in my life; it's all good. The leukemia is still in remission; we bought a beautiful new house and the clinic has seen one patient so far.

The clinic patient seemed to be a success. Her care givers seemed happy with the intervention. We helped and have a plan to help more. There are potentially two patients to see next week and we are not even officially open yet. The computer tail seems to be wagging the dog here and we cannot open until the electronic medical record is ready for us to open. We don't have a department according to the electronic medical record so we can't actually see patients. The one we've seen, and now two more we hope to see, are seen as internal medicine patients officially and billed as internal medicine patients, get internal medicine notes, etc although they get the full palliative care treatment. Arg! it's a good thing we have computers to make our lives easier. The real news here, however, is that I think the clinic is going to be a success and that I am going to know what to do. I had my doubts at times on all fronts. I mean, I know how to do hospital palliative care consults and I know how to do internal medicine office consults, but I was worried that I wouldn't know how to take the knowledge base of palliative care and translate that to an office. I was also worried that I wouldn't have enough to offer patients and their families so we would not get referrals. Additionally I was worried that I would be an interpersonal clodhopper and it wouldn't matter how effective I was with patients, no doctor would want to deal with me so we wouldn't get referrals. I am starting to see that I can do OK with referring docs and am starting to see the value of what I do in the hospital even when I cannot get the desired result within twenty minutes of seeing the patient. These things make me feel more confident. Additionally, I am (slowly, o so slowly) catching on to the beauty of the fact that it's a team sport and even if I don't have something useful to offer, the nurse or social worker will and as part of the team I get credit for their work just as they get credit for mine. Ah! I can relax a bit now because I have a good team.

My friend, Barbara's dog team. The shadow in the left part of the picture is my dog, Maggie. Her protege is the fluffly little white dog next to her and Maggie learned everything she knows from the yellow dog in the middle of the picture.

I am suddenly feeling that I have a lot to say here and expect tomorrow to be tapping away again. I am grateful for this blog, for your patience and persistence in checking here even though I've been stewing silently for almost a month. I am hopeful that we will have many conversations.

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.

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.