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.

How will I know I'm back to normal?

You may recall a million days ago when I was in the hospital still I asked myself how I would know I was out of the hospital. The answer was that I would be at my favorite restaurant with Terry. Of all the hundreds of moments of experiences that could mean normal that was the one I seized on and it felt iconic for me, so much so that I really wanted my counts to become normal enough that I could eat at a restaurant, way out of proportion to how much I actually wanted to eat and not because I was craving any particular meal they made either. The experience of sitting in their restaurant with Terry had just become a shorthand in my brain for "normal."

I had a similar experience with the return to work. What became equated with "back to normal" in my brain was seeing patients in clinic. I was anxious for everything to return to normal, to work full hours, to do my regular job, etc., but this was more, a special identification of seeing clinic patients with being back to normal. I noticed that I was really desperate to see patients in clinic and any delay or setback felt like a huge personal affront and the tiniest things would go wrong and I would feel the clinic would never get started and become distressed. I began to really start tying myself in knots to try to see clinic patients. Eventually, I realized that the reason I was doing it was that clinic = normal and I wanted so much for things--for me--to be normal. I wish I had figured out sooner that this was a case where a cigar was not just a cigar and I might have been able to modulate my behavior more normally. I could have quenched the desire to see clinic patients perhaps a little and resulted perhaps in smaller self-knots. (O, the irony, in trying to make things normal, I behaved somewhat abnormally.)

The mind gets some really funny ideas in its head. I am grateful for figuring that one out and hopeful that I figure out my next episode of non-rational thinking sooner.

Normal labs

Here is a normal lab:

Saving her energy for her next round of ball chasing.

I also had a whole set of normal labs today in Lebanon. Yeah for normal labs! I'll take my marrow outside and snuffle around in the dead leaves because that is what normal labs do.

There are a bunch of things from today's visit that I am chewing on that may show up here, but we'll start with the fatigue. I have been a little bit more tired than I expect to be recently and I asked about it. My John stand-in said that in her experience, people younger than me (like in their 20's) get their pre-leukemia energy back and people older than me (like 60's) get back about 80% of it. She said she felt she couldn't really predict if I would be more like a 20 or a 60 year old. I sure feel more like a 60 year old.

I reminded her that at one point, John had talked about a transplant of my own filtered stem cells (an autologous stem cell transplant) and that some one had told me that took about six months to get back to normal after. She said that was not what she had observed that it took way longer and anyway the chemo I had was about as bruising as an auto stem cell transplant. This was a surprise to me because since I didn't have that hard a time with it, I assumed it was actually fairly wimpy chemo (I imagined it as "chemo lite"). Hunh. I guess not.

It seems I earned my fatigue.

I am thankful that my labs are normal and hopeful that my energy becomes so.

Falling

Lots of different kinds of people seem to read this blog. Some are my doctor friends, many of whom know way more about everything AML related than I do. Some seem to be people in the former Soviet Union who are trying to learn English (my grammar is pretty good, but sometimes I deliberately use non-standard constructions, so don't rely on it). Some are long time friends and are smart people but don't know their cerebellum from their cerebrum, so we'll start there for today. My medical friends, just skim the next paragraph or two until we get back to the leukemia story.
So, let's talk about the cerebellum today. The cerebellum (Sara Bellum) is the part of your brain that is in the back and bottom. When you cradle the back of your head with a single hand, I think of that as surrounding your cerebellum. They turn out to be fairly vital pieces of our brains (there's not a lot of wasted real estate in there!) connected with motion and how we move in and through the world. What they told me in med school (and, remember, I did not graduate in the top quarter of my class or even the top third) is something like this: there seems to be a movement generator in the brain that initiates brain impulses for useless movement and the job of the cerebellum is to pare those down to just the useful ones. They say commonly that the cerebellum takes away useless movement the way that Michelangelo took away useless marble. OK, not all that helpful, but it's all I got. Google probably has a better explanation.
Alternatively, once in my career, I saw a patient with severe cerebellar failure, due to a weird auto-immune thing. His sense of balance was so impaired that he was nauseous just rolling over in bed; he could not sit because he couldn't balance himself; if he reached for something, he would overshoot and then when he tried to correct the overshooting, would overshoot in a different direction and his speech was very difficult to understand. He was confined to a bed essentially, but had normal thinking and feeling. This is not something one can learn to get better at; I was able to help a bit with meds, but basically, he was going to have to live in a nursing home in bed forever. If rolling over made him nauseous, you can imagine what the ambulance ride from the hospital to the nursing home was like for him. (the video is not my patient and actually shows mild dysfunction)
Additionally, people with severe cerebellar dysfunction often cannot control their eye movements. To some extent, your visual processing apparatus in your cerebral hemispheres can accommodate to this.

(warning: mention of alcohol below)
Alternatively, again, alcohol intoxication is a different kind of cerebellar toxicity. Think of a very drunk person staggering around or attempting to touch their nose.
(end warning)

One of the main side effects of the chemo for AML is "cerebellar toxicity." I did not give it a whole lot of thought at the time; if forced to choose between incoordinated physical actions and AML, I would have said "Please give me the highest dose possible; I'll put up with the side effects." They test patients' cerebellum before and after giving the dose to make sure nothing has gone wrong and to make sure the next dose doesn't need to be adjusted and I never showed any signs of anything going wrong.

Interestingly, however, I have noticed some subtle differences. (warning: more discussion of alcohol) I have never been a heavy drinker; I frequently will drink two glasses of wine at a sitting, but more than that and I am no longer coordinated and I don't like the loss of thinking ability that comes with more than two drinks for me. However, I would say over the several decades I've been exposed to alcohol, I've had more than two drinks maybe two dozen times so I have a database of how my body responds to alcohol that is fairly consistent. After dose number two, we went out to dinner with a friend and I had one glass of wine. I noticed when we left that I was thinking fine, but stumbling on the uneven flagstones. Usually if I were stumbling on the flagstones, I would also not be thinking well. Hmm. A little bit of cerebellar toxicity. No one asked and I did not want anyone to consider reducing my dose so I did not offer this information. (no more alcohol in this post)

Now, six months out (go, me!), I have some new wonderings. Previous to the leukemia, I would guess that I fell about the usual amount for a normal active person, maybe once every few years. Since the leukemia, I have had four falls (listed in order of least likely to be related to chemo toxicity to most).
1. late May - Maggie saw a squirrel when she was on leash and pulled me over
2. late May - we were moving and I was carrying something heavy and big down the narrow, uneven stairs at our old house and my foot slipped off a stair and I fell (3 of 4 family members as well as some guests have fallen on those stairs prior to my fall)
3. Oct - I didn't see a step in a darkened parking garage and fell quite spectacularly. Was it that it was dark or that I didn't lift my foot high enough?
4. June, 2013 - I was attempting a somewhat acrobatic movement over the garden fence and failed.
The falls were far enough apart that I didn't consider that I had had a dramatic increase in my falling until the recent one. Random chance? Subtle cerebellar toxicity? Weakness as a result of the huge muscle loss associated with two neutropenic fever episodes? Interesting, whatever it is.

My experience is that questions about falling perhaps should be part of survivorship care. It might be an interesting study to ask people to estimate at the time of diagnosis how many falls they have had in the previous year and then to check up on their one year follow up with where they are. It would be an easy study to do in terms of how much data and how much people would need to change their clinical behavior, but hard in that it would take more than the usual 1 or 2 year med student/resident research cycle. If I get to do survivorship care in my clinic (which I would really really like to), I'll add it to my arsenal.

I am grateful that my most recent fall did not result in anything broken and hopeful that I can continue in personal survivorship.