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.

Thoughts about last year

I was intending to write a little post about running and rehab and cancer survivorship, but I think that will wait for another day because when I came here, I decided to go and see what I was doing this time last year. It turns out that I had been consolidated for the third time and was just sitting around waiting to get my second neutropenic fever. I have since learned that usually only one in six rounds of severe neutropenia results in neutropenic fever. I'm just an overachiever with two out of three providing me the experience.

It was interesting to read the blog for last year because there were a lot of things in it that I thought had happened at a different time, for instance, remember the french toast that Ellie announced we were bringing in Friday as she was going to bed Thursday night? That was early November. I would have guessed much later in the school year. I talk about a blood transfusion that got stopped because I had a fever. I really don't remember that at all. I was also surprised to read my detailed descriptions of the physical sensation of neutropenic fever, doing my Dartmouth benefits last year, turning the TV on at Dartmouth in my room to find out the election results, etc.. Gosh! I don't remember any of that.

I guess it makes sense because I was pretty sick and my brain probably had a hard time laying down memories when it was 102 degrees for days on end, to say nothing of being super stressed and having had a ton of toxins washed over and through it. I worry about what the longer term effects are to my cognition of what my brain went through with leukemia and, in particular, the chemo to get rid of it. People tell me they can't tell that I'm not as smart as before leukemia/chemo, but I can.

New baby bamboo growing in my office. May my brain be sprouting new neuronal connections too.

There is also a certain sense I have of being astonished that I went through all that. I know when I have said that I didn't really suffer very much during my leukemia treatment that observers often disagree. As I read my old blog entries, I don't feel that they are the writing of some one who was suffering, but I am surprised to read about all the stuff that went on. I had forgotten about the gram positive blood culture, how long it took my fever to go away, how long I felt cruddy for before the second neutropenic fever, etc.

May all of our brains improve with time. May our memories of the past improve as time passes.

More with the hair

My birthday bouquet. I'm another year older. Yeah, me!

A tiny bird that got confused in our garage resting in Tommie's hand before flying off

OK, you're tired of hearing about my hair, but here's something funny. You know how when you wash your hair, a few strands come out and go down the drain? Well, that hasn't been happening since I regrew my hair. I didn't even notice the constant low level hair loss was missing until it started back up again earlier this week. The loss was missing and has been found. Another little step closer to normal.

Thankful for them all and hopeful for more.

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.