Tuesday, December 3, 2013

Sundowning

I've been developing a bit of an anxiety problem recently since being in remission from leukemia. I've been trying to get to know the anxiety a bit, to pay attention to it and its habits since it's evidently going to be around a bit. I have noticed that it is worse at bed time, fairly consistently and wondered why that might be. It made me think of existential pain which in the hospice business we sometimes think of as being worse at night because it is quiet and there are fewer distractions and it is harder to avoid thinking about things one might prefer not to face. Was the relative quiet and forced focus what was making my anxiety flare? My sense was no, that the anxiety feeling was not somehow in the background all along, blossoming when the environment got quiet enough, but that it was not there and then suddenly it was.
What other known medical conditions might it be like? I next thought of "sundowning" which is when someone with a fragile brain gets confused in the evening into night-time and then clears up during the day when the doctor observes them. The prevailing wisdom is that the timing is because there is less natural light and less stimulation in the early evening. I was reflecting on the similarity between sundowning and my anxiety (and, I must admit, wondering if my bed time anxiety was a very early form of sundowning). My worries about my brain's fragility may or may not be true, but what they did make me consider is whether or not the darkness, stillness and lack of stimulation was contributing to my anxiety state. Again, I didn't think so; it didn't feel right.
Transitions in New Foundland

Casting about for more parallels, I considered the toddler who falls apart with transitions. That felt more like the cause of my anxiety flaring up, the transition itself. I returned to considering the sundowning patient and wondered if their sundowning might be related to transitions rather than the actual level of daylight or amount of stimulation. Sundowning does occur with the change from day to evening shift, with the shift from the business hours part of the day with lots of staff and testing and activity to the more restful part of the day with a focus on tasks like eating and sleeping. No one would mistake the evening hours feel of a hospital for the day time vibe. I wonder if there is a difference in sundowing in institutions that have twelve hour shifts instead of the more traditional eight. Interesting thoughts, all.
May our brains be robust.

Saturday, November 30, 2013

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.

Sunday, November 17, 2013

The unintended lesson

Saturday I awoke feeling extremely anxious. I was on call and I had a number of patients who were active and as soon as I relaxed my brain enough about one of them to get to sleep, I'd get a call from someone about another of them, then I'd have to think, rethink and second guess myself about each patient each time before I could fall asleep. Ultimately, I got four calls and had a couple of patients I was worried about that I didn't get called on so as the list of thinking and rethinking was getting quite lengthy I was happy when the sun finally rose. Usually I can take myself by the hand, go over my thinking once, decide what I did was right and be done perseverating, but I just could not Fri/Sat night. Fortunately, I recognized this as a symptom of needing a yoga class or a run and opted for the next yoga class in my local studio which encourages dropins--"all levels."

A branch grows into the gap on a marsh boardwalk in New Foundland.

Class was great; I felt so much better afterwards that it was remarkable to me that I still looked like the same person. I did have one question, however. I noticed that the teacher wanted us to breathe more quickly than my body seemed to want to breathe. He seemed like a person who had thought a lot about yoga and why he was doing what he was doing so I asked him for his thoughts. He explained it to me and I didn't understand most of it so haven't retained it, but then he said, "if you breathe more quickly, you'll feel more invigorated." At that point, feeling more invigorated was the last thing I wanted so I asked, "what if I don't want to feel more invigorated?" He looked confused and maybe a bit angry and I feel badly that I asked because it clearly hurt his feelings. He had no idea of how to answer and said a lot of words, but eventually came to if I breathe with everyone else it will be good for the whole class because we'll be modulating our energy together. I thanked him and left. (People who know me well know that this is an answer that will always make sense to me. "If you do it this way, it will be good for everyone." "OK. I will, then.")

I've thought a lot about this interaction especially in light of my own interactions with people where I am the one who "has thought a lot about these things" (i.e., the doctor-patient relationship where I'm the doctor) and realize that he could have said "I am having a hard time here imagining anyone who wouldn't want to be more invigorated. Maybe I don't understand what you mean by invigorated. Please tell me what invigorated means to you." It would have been helpful for both of us. When I think about saying that to patients, it seems stilted and silly because of course we know what "less pain" or "invigorated" means, but now I wonder, really? I have tried from time to time to get people to explain what they mean by a particular word and usually am met by annoyance on the part of the patient. "you know, dizzy?!" and I think that's because I didn't stress enough that *I* was not understanding. I think people have thought I was either being deliberately obtuse or pointing out that they were not using the right word. I wonder if this is an example where bringing myself into the conversation explicitly as *I* do not understand would be a useful twist. It also feels weird to me to say that many words together when someone is trying to tell me something, like it interrupts the flow *a lot,* but maybe that's the point that the flow is not going someplace useful if it goes without me (in some cases).

This situation also makes me think about what I have said to people 100 times since getting leukemia, "I thought I was empathetic before and pretty good at understanding what it might be like for patients, but it turns out that there was a lot I didn't get." Now, I am wondering what in daily life I'm not "getting." Like, I think I'm pretty empathetic and good at imagining what the world is like for those I interact with, but maybe not. It seems the rift around each of us might be bigger than I previously thought, but also may be more easily breachable than I imagined. Hmm, by using myself as a bridge for those of you who do not mind topologically impossible metaphors.

May the gap be minded, noted and crossed.

Wednesday, November 13, 2013

My real hematologist, redux

I got to visit John on Friday for a routine follow up. It was everything I could have hoped for. I was happy to see him and to catch him up on what I had been up to while he was out of clinic. He told me about running the NYC marathon with med school friends. I was flattered that he remembered that I liked to run.

My labs were normal. OK, normal for me. I may never make a lot of platelets again, alright? They're overrated. Who needs 'em, anyway? I never liked platelets very much and don't see why people get all excited about them in the first place. And, anyway, who's to say that the 120's aren't the optimum range? I mean, who put those people who set up the normal ranges for lab tests in charge anyway? I didn't rant to John--actually he told me he thought I was appropriately not excited about my mild thrombocytopenia. 

I then explained to him why I think I have an IgA deficiency which is actually a nice piece of general medicine. It's really important to me that he knows I'm a pretty good internist so I was pleased that he seemed to be able to see this fact when I laid out the story. I've never felt before like he particularly understood that. After we were done with the leukemia follow up part, he very kindly chatted with me for a while about hospice and I offered to have his fellows or students come down and spend time with me in the clinic or at the hospice house. He asked practical questions about scheduling, etc so maybe it will really happen.

It was so great to see him again.
Me, after the Great Island 5K a few weeks ago.

May there be many more happy reunions for us all.

Sunday, November 3, 2013

Thoughts about last year

I was intending to write a little post about running and rehab and cancer survivorship, but I think that will wait for another day because when I came here, I decided to go and see what I was doing this time last year. It turns out that I had been consolidated for the third time and was just sitting around waiting to get my second neutropenic fever. I have since learned that usually only one in six rounds of severe neutropenia results in neutropenic fever. I'm just an overachiever with two out of three providing me the experience.

It was interesting to read the blog for last year because there were a lot of things in it that I thought had happened at a different time, for instance, remember the french toast that Ellie announced we were bringing in Friday as she was going to bed Thursday night? That was early November. I would have guessed much later in the school year. I talk about a blood transfusion that got stopped because I had a fever. I really don't remember that at all. I was also surprised to read my detailed descriptions of the physical sensation of neutropenic fever, doing my Dartmouth benefits last year, turning the TV on at Dartmouth in my room to find out the election results, etc.. Gosh! I don't remember any of that.

I guess it makes sense because I was pretty sick and my brain probably had a hard time laying down memories when it was 102 degrees for days on end, to say nothing of being super stressed and having had a ton of toxins washed over and through it. I worry about what the longer term effects are to my cognition of what my brain went through with leukemia and, in particular, the chemo to get rid of it. People tell me they can't tell that I'm not as smart as before leukemia/chemo, but I can.

New baby bamboo growing in my office. May my brain be sprouting new neuronal connections too.

There is also a certain sense I have of being astonished that I went through all that. I know when I have said that I didn't really suffer very much during my leukemia treatment that observers often disagree. As I read my old blog entries, I don't feel that they are the writing of some one who was suffering, but I am surprised to read about all the stuff that went on. I had forgotten about the gram positive blood culture, how long it took my fever to go away, how long I felt cruddy for before the second neutropenic fever, etc.

May all of our brains improve with time. May our memories of the past improve as time passes.

Sunday, September 8, 2013

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.

Tuesday, August 20, 2013

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.

Friday, August 16, 2013

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.

Tuesday, July 30, 2013

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.

Thursday, July 25, 2013

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.

Sunday, July 21, 2013

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.

Saturday, July 13, 2013

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.)

Tuesday, July 9, 2013

Body, body, who's got the body?

I continue to be astonished how a year after my diagnosis, six months after my treatment is over, I  can be laid low by something as small as an infection and a course of antibiotics. I am still "having problems" and am mostly back to normal, but my pre-leukemia self a) almost never needed antibiotics and b) was never sick enough to notice that I was sick. I feel like I am inhabiting someone else's body.  Can I please have mine back?
(nope. It no longer exists.)
I hadn't started out to write this, but I suppose the real fact about my pre-leukemic body is that it  was going to die one way or another and fortunately it died in such a way that my post-leukemic body could be born out of it.
I am grateful to have a body to continue being in. I hope it remains available to me for a long time.

Sunday, July 7, 2013

Feeling like consolidation

So, I mentioned the swollen eyelid and the antibiotics which caused me no problem at all for several days, but yesterday I was so tired I needed to take a nap and last night, I started having a lot of diarrhea and this morning I was so tired I went back to bed an hour after I woke up. I took some immodium and felt better, but still not great.

What was remarkable to me was that I felt like nothing more than post-consolidation. I had kind of forgotten that slightly vague, unattached feeling. I was tired and a little bit sore all over and I felt like I was not quite with it--almost not quite in the world somehow. I wandered around not sure what I was going to do next without a specific plan or desire. Later in the day, I felt a little better and went to Nancy's cheese store. I was tired and sat on the stool by the counter while I waited my turn. I haven't done that since I was recovering from chemo. It felt like a real touchstone. The conclusion I drew is that I have no reserve and as soon as anything goes wrong, I just get exhausted. What is really aggravating is that I don't really know how to build up my reserves besides to sleep and go to weaving workshops.

I am thankful that I don't usually feel like I felt today. I am hopeful that I will feel better tomorrow.

Friday, July 5, 2013

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?

Monday, July 1, 2013

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.

Sunday, June 30, 2013

More on weaving and Harrisville

I wanted to put in some text besides photo captions, but blogger doesn't seem to want me to tonight. 

So, here are pictures:

After one runs 3.4 miles in a hilly terrain when it is 88 degrees, one can make any sort of face one wants for the selfie. In the background is the bed and breakfast I stayed at--The Harrisville Inn. I couldn't get their sign in the background. There are five rooms, they grow their own vegetables and eggs and organize the community garden that is just up the road. The other people who stayed there were very congenial and we sat around in their front room, chatting almost every night. The bed and breakfast put out a bottle of wine and a plate of cookies every night. "Something for everyone" must be their motto.

The general store is in the background. The town owns the building and rents it out. It has a really great grill in it and they make delicious prepared foods. Kale salad, asparagus and mozarella paninis, etc. Also some nice little cakes. The ice cream is subpar and kind of expensive besides. The iced coffee is perfectly acceptable and--a nice touch--you fetch your plastic cup and lid pre-filled with ice out of the cooler.


This is the view back into town from the general store. The buildings sit over the stream which used to power the mills as it lost elevation on its way through town. There is a plan to re-harness the river and produce small scale power again for the 125 (!) residents of town. 

Thursday, June 27, 2013

weaving in a most beautiful place

I've been weaving on ad off for twenty two years or so and except for several moths of lessons at the beginning have been self taught. This is incredibly ironic because I am a big fan of formal education.

Go figure; it never seemed to bubble up to the top of the list of Important Things to take a weaving class. There are plenty of good books on weaving to learn from and I have read many and owned more, including the rug bible, appropriately enough titled "The Techniques of Rug Weaving." The son of the guy who wrote it teaches rug weaving classes every summer which sell out more or less as soon as the hosting institution announces them. This year I managed to sign up for the one in Harrisville in time. I have learned an incredible amount and have been having a very good time.

Harrisville is a very interesting place and is one of the best preserved early industrial villages in the U.S. (so they say). It is gorgeous and incredibly untouristy. In fact, they try very hard to just do their work and go about their business without attracting any attention as they are afraid essentially that any observation will change that which is observed. The guy who owns Harrisville Designs who is also the president of the board of the local historical society gave us a talk today at lunch time about how Harrisville managed to preserve its essential nature and keep from going bankrupt. It involved a large measure of vision and a medium measure of luck. I already told Terry it's a good thing we just bought a house in Exeter or I would be agitating for us to move to Harrisville; it's that charming.

I will post pictures when I get home and am not free-loading off a neighbor of the bed and breakfast who has not password protected his wifi. Thank you, Nathan.

Saturday, June 22, 2013

You didn't do that right

Recently, I had the opportunity to get a warm blanket for an elderly patient. It turns out that there is a skill to giving a patient a warm blanket, not much of a skill, but enough that if you haven't mastered the skill and you perform the task, the patient will know.

Here are the key pieces: patients who ask for blankets are cold. Patients who ask for warm blankets are especially cold. The rate at which two objects tend towards each other's temperature is proportional to the difference in their temperatures, i.e., the warmer the blanket, the faster it cools down.

Here's how to do it ideally. Get your blanket(s) from the warmer. Do not unfold. Put the part of the blanket that has been on the shelf against your front. Wrap the rest up in a non-warmed blanket (only necessary if you have to walk to a different until as I did). Hurry back. Put the blanket down taking care to wrap up the side that had been against you with the loose end of the non-warmed blanket (extra blanket will not be there if the warmer is on your unit). Pull all the blankets off the patient and to the bottom of the bed--below the patient's feet. Be sure that several are untangled so that they can just be pulled straight up when you're ready. Leave a sheet on the patient. Unfold the blanket and put it on the patient, unfold the other blanket and put it on, then pull up the other blankets to insulate the warm blanket from the cold air. These steps must be done quickly or the blanket will lose its heat before it gets to the patient.

This particular patient had never had a skilled practitioner of warm blanket before and really appreciated my efforts.

As I thought about this patient, I realized that there was one nurse in Lebanon that I had who did not know how to do warm blankets. It's such a simple skill that really anyone who is reasonably dexterous can manage it. What she did wrong was unfold the blanket, then pull the old blankets down. This allows most of the heated blanket's heat to escape before it gets to the patient. I even said to her, "don't unfold the blanket until the old ones are off" as I was frantically trying to untangle them and get ready to accept the new one. As predicted, the warmed blanket was cold. I did not ask her for another warm blanket. I didn't ask for two reasons that I can identify: 1. I didn't get a warm blanket so why ask for something they won't give you 2. she did not listen to me when I told her how I like it done so I didn't really want to interact with her anyway. Remember, I speak the same language as the nurse, am articulate, hear well, am a doctor and still chose just to wait for the next shift rather than risk a repeat of that interaction.

When I think about our patients who won't "participate" but are still insisting on full treatment so doctors and nurses get mad at them and tell them they're not being consistent or making sense and roll our eyes when we're talking about them in the doctor rooms and then it turns out that they won't do PT because they therapist puts their prosthetic leg on in a way that has led to injury in the past and they told the therapist but they didn't listen and the doctor was too busy and the nurse never asked so they just feel like why should they bother trying to explain to us and the next thing you know people are saying what a difficult patient they are. My issue was just a stupid warm blanket, the consequences of a nurse getting it wrong are that I'm colder than I needed to be. Things not going well for some of our fragile patients could mean a non-healing stump wound or falling. I can see why one might become inconsistent and difficult.

My nice elderly woman was very happy with her warm blanket. I told her I couldn't cure her cancer, but I could help her get warm.

I am grateful for the warm blankets in my life, both literal and figurative. I hope I can always be warm.

Thursday, June 13, 2013

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.

Wednesday, June 12, 2013

Being an attending physician

This article in the NYT today (free with registration) reminds me of something one of my first patients in Exeter said to me, "If you are going to be my attending physician, the thing you will need to do for me is attend. Don't just do something, stand there." When I started in Exeter, I took over the practice of a beloved physician who had been there for eleven years and left to live closer to her aging parents. A few of her, now my, patients didn't even come in to meet me, just went off and found new doctors right away. A handful (I specifically remember two, but there were probably more) met me once and decided it would not be a good match and went off to other doctors. Many made it clear the first time they met me that they were checking me out and if I didn't meet their expectations, they would go find themselves a new doctor. Most of this group decided pretty quickly that I would do OK. My style and the old doctor's style were fairly similar which helped a lot. The patient above, who was well over ninety when I first met him, was one of the last group. I am not even sure as he left after our first meeting that he had decided he would keep me, but ultimately he did, dying two years later in my care suddenly at his home.
In our time together, he taught me a lot, including much of what I know about advanced care planning. He had thought extensively about what he wanted at the end of his life and was the first person to tell me that he did not want under any circumstances to spend a single day in a nursing home. If he entered the hospital for any reason and I thought he was going to need to be discharged to a nursing home even for a few days of rehab, he did not want any medical support at all; he preferred not to survive if nursing home would be the result. He was very adamant about this. He was worried about having an illness that would weaken him so that he could not be independent, but not take his life. His wife had spent years in a nursing home and he was very afraid of a similar fate. He had had this same conversation with his cardiologist, too. And just in case I had any doubts, he would remind me of this conversation from time to time. Did I mention he was a retired physician?
As I stated above, he died suddenly at home after laughing at a joke. I think of him often, especially his reminder of the true meaning of "attending physician." Just attend.
I attended a football game a long time ago where the sharp eyed will see Emily in the formation.
I am grateful for all the lessons from my patients over the years. I am hopeful that I can continue to pay attention and learn from them.

Tuesday, June 11, 2013

So, what do you think of my thinking?

I've talked a lot about the personal meaning I make from the whole leukemia experience involving in part that I am going to be a much better doctor because of it. Here's a concrete example of how.

I've used this particular little talk twice with patients. Once it made no difference at all and once it really made a difference for the patient. It's a talk for people who are a little delerious and who may not want to take their meds for it because they don't trust anyone. Here it is verbatim so you have to imagine my voice and the way I talk while you read it.

So, I don't usually tell patients this, but I think it might be helpful. I don't know if you know, but I had cancer last summer (aside: one of the patients was so paranoid that I showed him my port scar to prove it which really helped). It came out OK; I'm in remission and stuff (aside: this part of the talk feels a little off and I try to gloss over the I'm in remission part b/c the person I'm talking with hasn't been), but the worst part of all of it: the pain, the nausea, the chemo, whatever the part that was worst, was the part where my husband told me I wasn't thinking very well. I mean, there's nothing you can say to that that doesn't make it worse and it's such a horrible and scary thing to have someone say. I'm not sure, but I wonder if the cancer might be trying to wreck your thinking up. Just a little bit, but it's such lousy sneaky stuff that it might be trying really hard to. Can I tell you what I was thinking? (segue to part of the talk where I explain what I think might help)

The first time I said this to a patient, it was not helpful, but the second time, it felt kind of miraculous. The patient was willing to give a try to a med he had been unwilling to try before (sadly, it didn't work, but it felt really important to everyone to try to make Plan A work and this particular med was necessary for Plan A). His behavior dropped down a couple of notches from almost impossible to manage to just tough and right after agreeing to this he had the nicest interaction he had had with a family member in weeks (maybe not related, but maybe). I really think this worked to reach this particular patient at that particular moment and it was something I could not have done or even understood without the leukemia experience. I just really did not understand what the experience of not thinking well might be like.

As an aside, a nurse and I were discussing a delerious patient and I told her that when Terry (and Tommie, too!) told me I was not thinking very well that that was really the low point of the whole experience for me and she said, "Even for you, Mary? with all you know about this stuff?" Ah, if only cognition ruled it all, huh?

Not related to cognition. Maggie in the Exeter River two summers ago.
I am grateful to have come out on the other side of the leukemia. I am hopeful for no return trips.

Sunday, June 9, 2013

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.

Sunday, May 12, 2013

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.

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.