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.

So, what do you think of my thinking?

I've talked a lot about the personal meaning I make from the whole leukemia experience involving in part that I am going to be a much better doctor because of it. Here's a concrete example of how.

I've used this particular little talk twice with patients. Once it made no difference at all and once it really made a difference for the patient. It's a talk for people who are a little delerious and who may not want to take their meds for it because they don't trust anyone. Here it is verbatim so you have to imagine my voice and the way I talk while you read it.

So, I don't usually tell patients this, but I think it might be helpful. I don't know if you know, but I had cancer last summer (aside: one of the patients was so paranoid that I showed him my port scar to prove it which really helped). It came out OK; I'm in remission and stuff (aside: this part of the talk feels a little off and I try to gloss over the I'm in remission part b/c the person I'm talking with hasn't been), but the worst part of all of it: the pain, the nausea, the chemo, whatever the part that was worst, was the part where my husband told me I wasn't thinking very well. I mean, there's nothing you can say to that that doesn't make it worse and it's such a horrible and scary thing to have someone say. I'm not sure, but I wonder if the cancer might be trying to wreck your thinking up. Just a little bit, but it's such lousy sneaky stuff that it might be trying really hard to. Can I tell you what I was thinking? (segue to part of the talk where I explain what I think might help)

The first time I said this to a patient, it was not helpful, but the second time, it felt kind of miraculous. The patient was willing to give a try to a med he had been unwilling to try before (sadly, it didn't work, but it felt really important to everyone to try to make Plan A work and this particular med was necessary for Plan A). His behavior dropped down a couple of notches from almost impossible to manage to just tough and right after agreeing to this he had the nicest interaction he had had with a family member in weeks (maybe not related, but maybe). I really think this worked to reach this particular patient at that particular moment and it was something I could not have done or even understood without the leukemia experience. I just really did not understand what the experience of not thinking well might be like.

As an aside, a nurse and I were discussing a delerious patient and I told her that when Terry (and Tommie, too!) told me I was not thinking very well that that was really the low point of the whole experience for me and she said, "Even for you, Mary? with all you know about this stuff?" Ah, if only cognition ruled it all, huh?

Not related to cognition. Maggie in the Exeter River two summers ago.

I am grateful to have come out on the other side of the leukemia. I am hopeful for no return trips.

Day 285 - the leukemic and not clearly thinking

I've had some really nice patient interactions recently. I've seen a patient so delirious he was requiring a person to sit with him all the time clear up enough to tell me he really didn't like Barack, but "he's the president so there's no use complaining about it." I had an actively dying woman squeeze my hand on request after her family had given up hope of being able to hear anything else from her. I really like my job and the things I get to participate in every day. I am tremendously lucky.

I saw another delirious patient today (that is evidently my theme for the week). She was much less delirious and could have a conversation and in fact doubted that she was confused at all even though people seemed to be thinking she was. I don't usually talk about myself with patients, but I told her that I had had cancer and that when I was getting chemo and my husband told me I was not thinking well enough to drive that that was really the worst thing for me. The more I tried to prove to him that I was thinking well, the more I sounded like a person who was not thinking well. She agreed with me and I felt her soften a bit and felt like she was willing to listen to me where she had not been so much before. I told this story to her nurse whose response was "Even you with all you know had a hard time with that?" There are some things that education and knowledge do not protect us from. I think for me the fact that so much that is important to me in my life happens in my head made the whole experience of not thinking well even worse. Evidently some famous person has talked about "a million dollar experience I wouldn't pay two cents for" and that is such a good description of the leukemia. I never understood how horrible not thinking well would be and I was just subtly impaired. I cannot imagine how scary the world must be when everyone around you seems puzzled that you are talking about the basement of a concrete slab building.

This is a street in the French Quarter and don't you tell me otherwise.

Those powdered sugar deep fried beauties there are called beignet (said bin YAYs) and they are about as delicious as they look.

I loved the trees framing the old brick building and the new building under construction. Sometime I will learn to crop photos and then they'll be nicer. This was taken through a bus window in motion.

I am thankful for the beauty and interest I feel in the world. Those are qualities I have not always found in the world and I am much happier when I can see them. I am hopeful to always have that gift. For you, too.