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.

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.)

The first follow up

So, I had my first post-treatment leukemia follow up last week. It was also my first appointment without John. It is all very weird.
You may recall, my labs were slightly off, as usual, a couple weeks ago. I therefore repeated them with Dr. Bengtson, my stand in for John, and guess what! They're still slightly, but not so quitely abnormal. Lather, rinse, repeat. We're rechecking in two more weeks.
It was odd seeing some one new. I had only seen her one single day of all the days I was in the hospital so we hardly knew each other. She asked me lots of getting to know you questions, like my kids' names and ages and what Terry does for work and where I went to med school. We reviewed my treatment. It is funny to me that I cannot really remember exactly when I was in the hospital. OK, I am not even sure about the months that I had neutropenic fevers in. I am positive they were both in the fall, but I cannot do better than that. It seems funny to me that I have lost track of some big details. I remember what bacteria I grew, however and its resistance pattern, my echo and CT results so I guess I remember the important stuff. We talked about how in people who are prone to anxiety/depression (such as moi), the period immediately following treatment is often the hardest time (this will get a separate post). We discussed my labs. We planned for more labs in two weeks. I liked her and am happy and feel confident in her care. She will be a nice stand in for John.

Here's a picture of Maggie snuggled up with me. I was a stand in for Emily who was at college when that picture was taken. We are all thrilled Emily's back for the summer now.

I am thankful my whole family is safe and sound and easily accessible for me. I hope it stays that way for me and is that way for you, too.