Tuesday, July 30, 2013

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.

Thursday, July 25, 2013

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.

Sunday, July 21, 2013


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.

Saturday, July 13, 2013

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.)

Tuesday, July 9, 2013

Body, body, who's got the body?

I continue to be astonished how a year after my diagnosis, six months after my treatment is over, I  can be laid low by something as small as an infection and a course of antibiotics. I am still "having problems" and am mostly back to normal, but my pre-leukemia self a) almost never needed antibiotics and b) was never sick enough to notice that I was sick. I feel like I am inhabiting someone else's body.  Can I please have mine back?
(nope. It no longer exists.)
I hadn't started out to write this, but I suppose the real fact about my pre-leukemic body is that it  was going to die one way or another and fortunately it died in such a way that my post-leukemic body could be born out of it.
I am grateful to have a body to continue being in. I hope it remains available to me for a long time.

Sunday, July 7, 2013

Feeling like consolidation

So, I mentioned the swollen eyelid and the antibiotics which caused me no problem at all for several days, but yesterday I was so tired I needed to take a nap and last night, I started having a lot of diarrhea and this morning I was so tired I went back to bed an hour after I woke up. I took some immodium and felt better, but still not great.

What was remarkable to me was that I felt like nothing more than post-consolidation. I had kind of forgotten that slightly vague, unattached feeling. I was tired and a little bit sore all over and I felt like I was not quite with it--almost not quite in the world somehow. I wandered around not sure what I was going to do next without a specific plan or desire. Later in the day, I felt a little better and went to Nancy's cheese store. I was tired and sat on the stool by the counter while I waited my turn. I haven't done that since I was recovering from chemo. It felt like a real touchstone. The conclusion I drew is that I have no reserve and as soon as anything goes wrong, I just get exhausted. What is really aggravating is that I don't really know how to build up my reserves besides to sleep and go to weaving workshops.

I am thankful that I don't usually feel like I felt today. I am hopeful that I will feel better tomorrow.

Friday, July 5, 2013

A substantial breath of air

We had dinner with some friends on Thursday and talked a bit about the house. It was more outloud reflecting on the subject than I had done since moving in. Perhaps because of that, I seemed to dream about the house and woke in the middle of the night with the dream fresh. In it, I said, "it's less like a house and more like a substantial breath of air." It is actually a really nice description as one of the best things about the house is how airy it is while it is yet very reassuringly substantial (spoken as a true home owner). We're being very happy in it so far.
What I look like in my new computer area. The house accessorizes me well, don't you think?

Monday, July 1, 2013

The swollen eyelid

You may know from real life that since going back to work, I've had a whole rash of little abscesses of various sorts on my nose and lips. I've ignored most of them and they go away on their own, I had one swabbed and took antibiotics for it when it reappeared. It grew MSSA and did not return after a course of (I think) bactrim. I suppose you are not surprised to hear that even though the latest one was still hanging around at two weeks, I didn't do anything about it. I mean, it wasn't getting any worse, so, really, what's the big deal? I did ask my hematologist to set me up with an ENT when I went up for my next appointment, and tried some neosporin on it which seemed to help the other ones go away faster.

This morning when I woke up my nose felt no different than before, but the upper eyelid on that side was swollen and sore and warm. I called my PCP up, explained the situation and got some antibiotics and a set of labs. The labs were ordered because every time I get an infection, doctors will worry that I have it because the leukemia is back and is trashing my immune system. Is the infection an early sign that the leukemia has relapsed? I did the labs at noon and then went to see a hospice patient in their home and went about a normal afternoon for a while longer. Every now and again as I went through my day, I would think "If my leukemia is back, some one else will have to follow up on this patient's medication change" or "if I have to go up to the hospital for another month long re-induction, I will miss how pretty these bushes are." Even just the process of thinking about if what I am doing is a worthwhile thing to be doing on my potentially last day of non-hospitalized summer is a good exercise. It makes for a more poignant than usual day to have a reminder all day long about how fragile the whole of a life is.

Mostly, I feel my life is somewhat secure. I don't see a daily threat usually. I've worked hard and gotten a marketable skill so I feel relatively safe from economic threat. Our town is safe and it's been a long time since someone in my personal life has threatened me physically. My kids are doing well and have friends and activities I approve of so I don't feel at risk through them. I feel that I am paddling along, relatively secure in the portion of the stream of life I live in and then suddenly I round a bend and see that actually the stream meets up with a river and picks up speed and has dizzying eddies and dead trees sticking up everywhere. I look around the part of the river I'm in and see that it is like that here, too; I just hadn't noticed somehow.

Then I got my lab values and they were fine. Not perfect because it will be a few years before my marrow recovers completely from its chemo-battering, but fine in the post-chemo way that they usually are. So, I will follow up on the patient's med changes and be around to admire the bushes through their whole flowering cycle. Unless one of the other hundreds of threats to my life rears up and snags me. I better get enjoying those flowers and raspberries.