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.