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.