Learning from the ATM

On our way to school, my younger daughter and I stopped at the credit union to deposit my first pay check from my new job. The credit union was conveniently located and a new job was a convenient time to switch financial institutions. 

I put my bank ATM card in and the machine would not accept it. I pulled it out, pushed it back in and double checked that it was rotated correctly. Eventually, the ATM grabbed the card and asked for my PIN. I gave it and the ATM said, "Incorrect PIN." I tried a different number. It didn't work. Another different number didn't work. Finally in desperation, I tried my bank PIN. It worked. That was odd. I was pretty sure that the credit union didn't use as many digits as the bank allowed for PINs, but clearly my memory was faulty. Next the ATM wouldn't allow me to deposit. I chose "balance inquiry" thinking that maybe it would give me a "more options" screen eventually. It gave me my balance (which was wrong) but never allowed me to deposit. I gave up and figured that I would be spending a lot of time on the phone with the credit union later that day to sort everything out.

It was then that my daughter pointed out I was using my bank card at the credit union. The balance was correct for my bank account.

I reflected as I drove away that whenever something goes wrong, my immediate instinct is that I have screwed up. I didn't put the card in right. I forgot my PIN. Once I have settled on the fact that I have screwed up, I stop searching for an explanation for what is going on. This is an example of the mental inflexibility that I have been appalled and shocked to recognize in myself recently. I remarked to my daughter, "I immediately think I am so stupid that I forgot my PIN rather than realizing the problem is that I am so stupid I am using the wrong ATM card. I need to be more flexible in labelling my stupidity."

She said that it was not stupid to use the wrong ATM card. That I was switching banks and used the bank card at least ten times more often than I used the credit union card. This stopped me in my tracks.

For me the external world is an often bewildering morass of sensations and inputs that come rushing and screaming at me. I cannot possibly attend to everything I am aware of and I take all kinds of mental short cuts to help make sense out of it. I have learned in life that if something, especially something mechanical, is not working, it is because I am doing something wrong. If there is an explanation for the circumstances that involves "Mary has screwed up yet again" or "Mary doesn't understand the way the world works as usual," my mind sighs in the sweet relief of a world that makes sense and I can continue without having to think very hard.

Not only is that not fair to me, it becomes a self-fulfilling prophecy. Instead of working to solve the problem, I relax into the comfortable world I have lived in for years, assume I’ve screwed up somehow, and stop trying to solve the problem, proving that I screw up and problems don’t get solved.

Assuming something else had gone wrong, casting my problem solving net further and working to solve the problem would allow me to live in a world where that problem was solved, and where I would be propelled forward just a little harder into my next problem because I had solved this last one.

I wonder what would happen if I vowed to assume I was minimally competent in the world. What if I defended myself against my own critical judgement? Would this model be more likely to produce good outcomes for me as I make my way in the world? Would I be happier?  

A lesson from the ATM this morning. Totally worth the $5 my bank charged me for using my bank card at a credit union ATM.

Coxsackie In an Otherwise Healthy 53 year old Woman

I never could get good enough at blogspot to use more than one picture in a post.
Starting from the top: There is lots of reflection in the first two, but I do not have my tonsils so everything you see that looks like tonsils is inflammation of the tonsillar pillars. It feels about like you'd expect.
My gum are not usually that purple color of the third photo.
Fourth photo shows multiple lesions on the end of my tongue yesterday or maybe this moning.
Fifth one shows the most painful ones on my left buccal mucosa.
Sixth one shows one of the lesions having bloomed quite impressively.
Last picture is not so useful, but if you can magnify it you can see my poor posterior oropharynx.

Now you've had your medical geek moment for the day. Thank you for joining me.

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.

A virtual speech

I didn't "get to" give a speech, but I did have a nice time last night after I got home writing an acceptance speech. I hope you like it. I do. 

Friends, thank you for this wonderful honor. When I was nominated for it, I was honored, of course, but surprised, too. I feel that what I do is take the best care I can of the next person in front of me. That doesn't feel innovative, but I see what you are saying in the letter and I guess would have to agree with your point. To win feels an incredible, astonishing honor. Thank you.

I'd like to thank my teams at Home, Health and Hospice Care: the advanced illness management team, the hospice at home team and The Community Hospice House team. Also, my Dartmouth team, my friends, my bosses, my teachers and my family. All of you, thank you for your daily love, support and affection. I could not even get out of bed in the morning without you, never mind take loving care of the sickest and most vulnerable patients in the system. You make me better every day. Thank you.

It seems that today a theme has emerged: that we have a choice regarding our stance towards the future. We can look at the regulatory changes and view the future with fear or we can view it as an opportunity to really live our missions. What is each of our missions? Fundamentally, to love our communities. As with everything else in life, we are offered the choice between fear and love. Michael Leunig says (and copying from John McPhee, I'll read it twice):

(please note, I have asked for copyright permission to put the poem here, and until it arrives, here is a link to it)

When I consider the choice in my own life between love and fear, it strikes me that every time I chose love, I was choosing to be my better self. I'd like to tell you about some of those times.

As Carla has already noted, today is June 13. June 13 is my youngest brother's birthday. He turned 56 today and I called him on my way in this morning and sang to his answering machine. Keith was 41 and I, 35 when I first met him and my other three brothers and my sister. Our father had already died before I got to meet him. Making the decision at 35 to track down and meet half of my family of origin was a real choice between love and fear. I was afraid that they would say that they had not contacted me all these years on purpose and they really didn't want me in their lives at all. That fear held me back from the time I learned of them at about 22 until when at 34, I finally paid $19.95 to do an internet search and found my Uncle Frank. It has turned out well. Keith lived with us, in fact, for a number of years and we have been a tremendous force for good in each other's lives. Happy birthday and I love you, Keith.

June 13 is also the day I was diagnosed with leukemia. It was exactly two years ago today that my secretary came running down the hall, frantic, "Dr Braun! Dr Braun! I'm looking for a doctor to talk to the pathologist, but it can't be you because he's calling about your labs!" It has been a million dollar experience I wouldn't pay two cents for. I have learned so much from it. I thought I was empathetic before, but I get so many things now that I didn't before I got sick. I am a much better doctor than I was before. The "kill the cancer" mentality is easy to fall into, but it never felt right for me. My leukemia was, well, mine. It was truly flesh of my flesh. I feared the leukemia, because I did not want to leave my children motherless, but the fact that fear was not my main emotion allowed me to be open and to receive what the leukemia had to teach me. I love you, my beautiful tiger, and am sorry I had to kill you in order to live.

Today is also the day I got this award. Those of you who are clinicians know the push/pull between fear and love that we feel with patients daily. In palliative care, where our patients are so fragile, the fear is so much stronger for me than it was in primary care. If I screw up, I could easily kill a patient. If I make a mistake, I could suggest a course that would ruin a number of the precious days of their last month. Then there is the fear that they are going to die on me, even if I do nothing wrong at all because that is what very sick patients do. Every day, with every patient, I have to adjust diuretics, pain meds, anti-epileptics, decide if we are going to treat this infection and if so how, choose nausea meds, make decisions about bowels, really think, really care, knowing that this patient for whom I am wracking my brain in all likelihood will be dead before my next day off. Over and over, I have to overcome my fear for them, my fear for my pain at their death and love them enough to apply my knowledge and experience to their specific situation, to really understand them. My patients all know this in their hearts, but I will say it outloud to you: I love you, my dears. Thank you for trusting me.

I have often said to people that if one were giving a life to someone with the intent of making them a palliative care clinician, one would have given them my life. It is nice to see my leukemia and my family of origin braided in with this award through the date of June 13 and I want to thank you again for honoring me with it. I am touched and humbled by your belief in and love of me.

I will close by saying again, we have a choice for the future: love or fear. Let's be our best selves and choose love. Thank you.

A real award

Yesterday, June 13, 2014, I received a wonderful honor at the annual NH Hospice and Palliative Care Organization meeting. I was the 2014 winner of the Ira Byock and Yvonne Corbeil award for innovation in palliative care. From the email notifying me I was nominated:

The criteria for the Annual Ira Byock and Yvonne Corbeil Award is: to recognize an individual, team or organization in Northern New England who has demonstrated innovation and collaboration to:

• Improve quality

• Expand access, and/or

• Increase efficiency

in delivering the best end-of-life care possible to New Hampshire residents.

I was honestly surprised to have been nominated and even more surprised to have won. Janice was reading off the nominees' names and bios and I was actually really interested in them: I didn't know Dr. Saunders done that or that Shawn LaFrance had all those intersting jobs or o my gosh, that was name and it seems to be in the same sentence with "the winner of this year's award." I went to the front and got some (hopefully) nice pictures taken with Janice and Carla. If they will allow, I'll post them later. Here is a picture of the award:

I will be hanging it in my DHC office. I am very proud and happy, appreciative of those who nominated me and did all the work of writing the letter, the committee who voted for me, the patients who allow me to take care of them, Steve and Barbara who point me in the right direction, my friends and family who support and love me so well. I promise to work hard to deserve this honor this year and going forward!

NH Fiddle Ensemble

New Hampshire Chronicle came to the Fiddle Ensemble and filmed a little bit of our rehearsal and concerts. Here is the video. I can't figure out how to control it at all so you may have to watch the whole thing in order to see this, but my 0.15 minutes of fame are at 6:20.

May we all make beautiful music.

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.

Maybe I was sicker than I thought

Let's go in the way, way back machine to this, my first chemo and first blog post. People who know me in real life know that the nurse who gave me my first chemo has left MHMC and now is a hospice nurse. At my agency! I had nothing to do with it. A relative worked there already, but I think that the universe had reasons of its own for throwing us together, which may or may not become clear as life (and this blog post) unfold. Either way, I am sure glad that I get to work with her because she is a great hospice nurse!

She called me this morning to talk about one of our patients that she had seen earlier. We thought about him and made some changes to his medications. Then as we were saying goodbye, she mentioned that "Ellie and I are getting our pictures taken this weekend." I realized that Ellie must be her daughter and said, "O, my daughter's name is--" and she said, "yes, but yours is Eleanor and mine is Eliana." I realized that we must have had this conversation before and it did not even sound vaguely familiar to me. How could I have lost track of such an important details as her daughter and my daughter have the same name? I then realized she must have told me this when I was sick. If I didn't remember it--like at all--that must mean that I was pretty sick. I said that to her and she confirmed that yep, I had been pretty sick and yep, that's how she knew my daughter's name and yep, we'd had the whole conversation about it. That there were times she was pretty worried about me because I had been so sick. I think I've discussed before that I never had the idea that I was really sick. I mean, obviously, I had leukemia, but sick? Nah.

Now, I know: was I sick? Sometimes. Most of the time, I was pretty well and it wouldn't have made any sense to tell me how sick I was. The rest of the time, I was honestly too sick to care. I wonder what would have happened had someone told me when I was semi-delerious that I was pretty sick. For all I know, some one did because my memory of those days is pretty thin.

As far as I can tell, here is the last pre-leukemia picture of me. I don't look sick, do I? My ANC was like 200 at the time this was taken.

I happened to go to Lebanon today to visit Dr. Hill. You'll be glad to hear that my labs are all ok. I told him the story and he said that yes, I was sick, but I was never in any real danger. I told him the story of the one time I thought I was going to die from my leukemia. Afterwards, I stopped by the nurses station as I always do. They see so many patients do horribly that it is nice for them to see one go off and thrive. There were only about six staff who remembered me there still, but I know it was nice for them to see a patient come back with a full head of hair, plump and wearing regular clothes. I took a picture of one of them and texted it to the nurse I mentioned above and she said hi back and it was very nice. Later in the day, when I realized that I wanted to write about this, I texted her and asked her to call me at her convenience so I could ask her permission. She read the text, knew I'd been in Lebanon and immediately her heart dropped into her boots, thinking something bad had happened to me.

When does it end? When will a bruise be just a mark of clumsiness? a text from Lebanon just a hello and a set of labs just an opportunity to see if I've developed the B12 deficiency my family is rife with?

May we all learn the lessons we need from our experiences.

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.

Hello after a long absence

Somehow, I seem to have forgotten that I have a blog and that maybe people are curious about what I'm thinking about or feeling or doing these days.

Since this is ostensibly about leukemia, we'll start there.  I had a set of labs earlier this week and for the first time in two years, have a normal platelet count and normal white count. Both have been kind of low since my remission and we've just felt it was my marrow protesting how beat up it got. Now, perhaps it is really recovering! I decided to celebrate platelets of 168 by slicing my finger with the bread knife. It did stop bleeding eventually; it was quite deep. I'm glad I didn't do that when my platelets were 2.

The river near my house.

The real thing that made me take my bandaged finger to the keyboard, however, is that my friend, Patrick sent out a poem that really hit me. For reasons I don't want to go into on the internet, my own sadness about my own losses over the years has been active recently and this poem made me cry. I wanted to share it. Maybe it will make you cry too.

For me that feeling of turning downward and not being able to breathe is exactly right. And then somehow you discover that you *can* breathe underwater. I have lived in the well for years at a time in the past and this poem took me back to those times. It was not a welcome trip and I shut my computer and tried to distract myself for several hours.

Not surprisingly, no dice. After nearly fifty years of living with myself, I have come to the point where I recognize that when something affects me like this, I have to return to it. I thought about the coins.

Remember this story from August ? "Recently, it seemed that a patient ['s family] had a turning point after ...[a conversation with me].... 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...[about not wanting her to die]." It really was a turning point for the patient. It was clear to everyone involved with the patient's care that they were not going to benefit from any aggressive care that our hospital inflicted upon them. I think even the family understood this and yet could not bring themselves to stop the invasive, painful treatments that were happening to their loved one. There really are a hundred things I could have said in response to "I don't want Sidney to die." I had just a second or two to pick the right one.

I love the image of the patient's spouse throwing a coin into the well, it sinking, sinking down and my grabbing it from the bottom and swimming up to him/her to return his/her coin. I've been in the well, all the way to the bottom and am back at the surface. You can jump in the well, sink down and come up alive still, too. I'll show you how. Come swim with me.

May we all swim well.

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.

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.

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.

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.

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.

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.