Saturday, May 10, 2014

NH Fiddle Ensemble

New Hampshire Chronicle came to the Fiddle Ensemble and filmed a little bit of our rehearsal and concerts. Here is the video. I can't figure out how to control it at all so you may have to watch the whole thing in order to see this, but my 0.15 minutes of fame are at 6:20.

May we all make beautiful music.

Saturday, May 3, 2014

How long the road?

When I was in the hospital, some one told me that if I had an auto-transplant, that it would take about six months to get back to normal and if I had an allo-transplant, that it would take about a year to get back to normal. Fortunately, I needed no transplant of any variety, but it is safe to say that I did not felt back to normal six or even twelve months out from treatment. I am now about sixteen months out and I think I started feeling normal at about fifteen months. I say "I think," because feeling normal does not arrive with an announcement; about one month ago is my best memory of it.

If someone was going to recover quickly from their leukemia, you would expect it to be me. I was pretty young (47-48 years old) and in good shape physically (I ran a five K the weekend before my diagnosis--I was slow, but still). I had lots of resources, support and help. It seems highly unlikely that most patients are going to recover from a larger intervention than I had more quickly than I did. I mentioned this to John at my last visit and he said that it didn't surprise him--that he would have guessed that I went back to normal about sixteen months ago when I went back to work. We talked about the questions he asks usually and what different questions might elicit that information (if he wanted it). He told me he would change his standard thing that he says to patients because he thinks it's probably not true. I certainly can attest to the fact that it's not useful.
Budapest looking its normal gorgeous self, hopefully feeling it, too.
So, now that I'm back to normal what does it look like? Lots of different things, but today it looks like me running five miles in under an hour. I am so happy because it is the best I've run since before my leukemia.

May we all be the selves we would like to be--our normal self or not.

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.