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!

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.

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.)

Day 259 - an unpleasant surprise

Terry had an interesting experience recently. He was at an award ceremony recently which was having AV problems. One of the speakers announced that before the next category, they would pause to remember those members of their community who had died in the previous year. Then, instead of showing the intended pictures of recently deceased people, they showed the pictures of the nominees for the next award. I wonder how it felt to be at a party, hoping maybe to win an award and instead to get a clear reminder of your mortality. Because, of course, one day their picture really will be up there because they're being remembered. The juxtaposition of hope that you will win an award and reminder that you're going to die one day must have been especially jarring. I hope the person whose picture was shown had already given some thought to their mortality to maybe take the edge off the reminder. I can think of patients I have seen in the past who would find this idea that they actually will die at some point to be novel.
I cannot recall if I mentioned that this week is to be my first official follow up appointment for the leukemia as my last leukemia appointment was my last official treatment appointment where we finalized that I was done with treatment. John sent me email that he was going to be away from the hospital unexpectedly and that some one else was going to be seeing me. I am sure you do not find it surprising that I replied that unless he was going to be out a long time, I'd wait for him. I told him that he's my hematologist and that we're not interchangable cogs. I wanted to see *him*. He seemed surprised, but pleased. It gave me a chance to reflect on the doctor-patient relationship. AML follow up is pretty easy: look at the results of a lab test and ask a few questions about energy, bleeding, bruising, etc. If the answers are abnormal, it gets tricky of course, but if they're normal, it's an easy visit. If it's normal, it will probably take ten - fifteen minutes. I will be driving one and a half hours to get to this appointment. John offered me at one point that I could do it in Manch or even by phone with him and I feel it is worth taking a half day off from work to do it with him and in person. Why is this?
A part of why I'm willing to drive three hours for a short appointment is that John represents safety to me. I trust him and I feel confident that he will think hard about my labs and will notice even a subtle abnormality. Another reason is that we have a history of him taking good care of me and this is the  appointment where I will be transitioning from a person whose leukemia is being treated to a person who worries that everything out of the ordinary signals a return of the leukemia. It will be nice to have someone who I have a relatively long successful history with.

 

This group of pansy relatives in my front yard is nearly immortal as this is its third year returning. They're not supposed to do that, but they haven't gotten the memo or perhaps they can't read. They're so beautiful and cute. I'm glad to see them every year.

I am thankful for the return of spring. I am hopeful that the natural world will continue to be beautiful and resilient.

Day 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.

Day 282 - we read books

When Emily was in town, we went to Water Street books because like any comp lit major who is thinking about library school, she loves her some books. I bought Emily a novel she had been longing for and had it wrapped for a present. Then I saw a book titled "Until I Say Good-Bye: my year of living with joy" which like any hospice and palliative care doc worth her salt, I was compelled to pick up. It is about a year in the life of a woman with ALS. It is not an uncommon doctor sentiment that ALS is the worst disease in existence and Susan Spencer-Wendel writes about facing the disease, deciding she is going to enjoy the time she has left and concentrate on helping her kids build good memories. What a fabulous book. I am happy to loan it out when I am done and highly recommend it for everyone, medical or not, hospice or not. Here is a tiny bit: "When I think of which role is worse--to be the spouse dying or the spouse surviving--I think it's the latter. The survivor will experience the same grief, will live the grief of the children, then must assume the responsibilities and slog on." Let me know when you want your turn with the book.
In other excitement, now that I am cooking something most weekends and freezing half of it for lunch, it's kind of exciting to take something out of the fridge and find out five hours later what's for lunch.
Here are some photos to get you in the mood for the next topic.

The Mississippi River is wide here. The train whistles were blowing in the background, there was a gentle wind. It was 50 degrees.

The church is the big cathedral in the French Quarter. In front of it is the famous park in the French Quarter and the clouds are lined up perfectly to draw your eye upward. There was music coming from a little brass band in front of the church and also from a guitar player a block away and to the right. It was very comfortable there.

I am working on an email to send out at work about the Home Health and Hospice Care-relevent portions of the AAHPM convention which I will probably post here at some point in the future.
For now, I'll tell you about the Cancer Survivorship lecture I went to. There were a whole bunch of speakers which is always a good plan to keep people awake especially if you have a lot of information to get across.
There are 13.7 million cancer survivors in the U.S. with 64% diagnosed five years or more ago. (The current definition of survivor is anyone with the diagnosis, as soon as they are diagnosed.) They talked about the nuts and bolts of what does a palliative care consultation for a cancer survivor look like, what kinds of symptoms get managed in a survivorship clinic, what is a survivorship plan. The most interesting thing they talked about were the psychological issues: in the personal domain (the "new normal," body image, sexual health, fertility, coping strategies and the implications of having lost one's safety net), in the interpersonal (caregiver distress, changes in roles, support networks and intimacy), psychosocially (loss/anxiety over future accomplishments that are lost, fear of recurrence and death) and in the socioeconomic realm (bills, insurance issues).
A surgeon got up at the end and talked about how she was creating survivors and how these stage 2 colon cancer patients usually did not even need to see an oncologist; they had their surgery and they were done. I feel, after the intensity of the treatment, somewhat out flapping in the breeze alone myself at this point, and I cannot imagine what it must be like to be in the position of one of those patients. After your surgery and your post-op care, you're done. You've had this huge diagnosis dropped on you and you get almost no support from the medical system for it. I mean, you're likely cured and you're grateful and all that, but it's still a huge diagnosis to get. I see a little bit why survivorship clinics could be tremendously useful to people.
I am grateful to have a job that is so endlessly fascinating. I hope to practice with skill and more each day. I hope you are intrigued by whatever you have to spend the majority of your hours doing, too.

Day 248 - work and blog

Today I have a couple of observations to make. One is that as I get better the blog gets less interesting. That is not only my opinion, but also the opinion of my faithful readers who are numbering smaller numbers which is OK. It is becoming less interesting, but less interesting is more normal and I'm OK with that. I am having the experience of having to tell people in real life anecdotes that I have put on the blog because they have not read the blog more and more. It's a little surreal to start to tell someone a story and to have them say "I read it already" or for them not to say it, but their facial expression indicates that they know what's coming. I took early on to starting stories that I had told in the blog with "do you read the blog? I was just thinking of blah blah" because most of the people I spoke with did read the blog. Now, it's reversed (both because fewer people read it and my world is bigger) and I don't routinely say that. It's an OK change.

The other observation is that I really miss primary care. I saw one of our palliative care in the home patients today because Eva, the nurse practitioner who runs the program, felt like she had run out of ideas for this patient. The patient has a whole bunch of interacting big ticket medical problems and it's not clear which ones are causing which symptoms and how, to say nothing of in what manner we might treat said symptoms. I felt like I really get to dig my teeth into some medicine in a way that I don't get to as much in hospice. Yum, yum! I am feeling very impatient for the outpatient palliative care clinic to start going. People who know me really well might have already started a pool about how long I stay away from primary care.

The bad thing about visiting patients at home is that if they smoke, you stink afterwards. I didn't think ahead of time and wore my really nice Patagonia jacket that I totally love into the house and when I came home, I hung it out on the clothesline to air before I did anything else. Later this evening, when it started gently raining, I didn't hear it until the jacket was so wet that it had collected a little pond inside the hood. The bright side is now I know exactly how rain resistant it really is and it no longer smells.

I haven't mentioned it, but Maggie has been off her food again. As a lab, she loves nothing more than eating so when she is hesitant to approach her dinner bowl or to accept the empty yogurt container, one knows something is up. I thought I could just call the vet and they would see her because she was sick (I don't know why I thought that; I couldn't always see my human patients when they were sick), but it turned out we had to wait two days. She's better, but not all the way. Her appointment is tomorrow morning so I'll guess we'll find out what her deal is. I'm betting on picked up from eating  gross debris in the woods and will be given flagyl.

For me, for tomorrow, I'm hoping for a serious attack of genius regarding today's patient. For you, I will hope for movement on a puzzling situation you would like to improve.