Notes From Supergirl

My Diary from the Trenches

Day 611

January30

I’m having sort of an out-of-body experience today and I haven’t fully digested what it all means or could mean, but I wanted to share the news. When I got to my appointment this morning, my doctor simply handed me a sheet of paper, a report, that showed a series of 100%s written down a column. It was a cytology report that they ran last week to determine the number of cells in my blood that are mine versus the donor. I don’t think I need to say any more than the doctor did, but simply put: 100%. All of those white and red cells, platelets and everything else working in my immune system right are brand new, 100% donor cells. My tired, unhealthy cells have vanished and what is left is a currently thriving new immune system. My doctor and I didn’t talk much today, we just did a lot of smiling.

I’m not going to talk too much about what this means, but a lot of that can go unsaid. I don’t want to talk about details (all of which are good), because I want to wait until I have my 100-day biopsy which will confirm what my bone marrow truly looks like. They will analyze everything at this point. But let’s just say that this is a very good sign of things having gone in the right direction.

As I said, it feels like an out-of-body experience in the most amazing way. I am excited, but feeling incredibly reserved about it because I am so used to ups and downs. Everyone I’ve spoken to has mentioned celebrating and I don’t feel like I can quite do that yet. I can’t celebrate until I see a report that literally states “all chromosomes are normal.” BUT, I am savoring this moment. I know my body has done something incredible and it gives me further confidence to believe it will do everything it needs to do from here on out.

I did indulge a little and eat a delicious red velvet cupcake while registering for the Half-Full Triathlon in October :) I also organized some work projects and took care of some details with my business that needed attending to. The more I can do to live my life, the better I feel. Today feels pretty great.

I think part of my hesitation today also comes from the fact that there are certain patients I cross paths with at the cancer center on a regular basis. There is one young girl who I see often on the transplant side. We’ve never been introduced or spoken to each other, but I suspect she is friendly with some of my contacts from Ulman Fund. In any case, I’ve watched her over the past few months as her hair has started to grow back in and she’s looked good, healthy and strong. Today I saw her and she was in a wheel chair. She looked okay, but it caught me off guard. I don’t know her story but had assumed that she had a transplant and would be skipping out the door in a couple of months. She might have something completely different. And maybe she was in a wheel chair because she hurt her foot. When there are so many of us there, all the time, you try to figure out everyone’s story and you want nothing more than to hear that they all turned out all right. I think it’s the same as when I read blogs by other patients. I find it excruciatingly difficult to read about others going through the same thing who haven’t had success. At points it is because I am fearful that I could end up like them, but at other points it is almost a feeling of guilt. Cancer isn’t fair. I want to celebrate my own good fortune but it feels selfish when there are so many others trying just as hard as me. Rather than focus on this as a negative, I’m just going to do what I can to send my positive energy their way – her way – so that maybe she will be better the next time I see her.

The last thing I want to do is just to send an overwhelming thank you to my donor. I wrote her a letter last week and I can’t wait to hear back. She has given me and my family and all of the people that love me a gift that can never be fully grasped. It goes far beyond simply allowing me to live my life, but to live a life that has so much more meaning, love, connection and faith than I could have ever had before. I hope I will get to tell her this in person one day.

4 Comments to

“Day 611”

  1. Avatar January 30th, 2012 at 9:05 pm Amanda Says:

    Oh Happy Day!


  2. Avatar January 30th, 2012 at 9:24 pm martha haddock Says:

    Wonderful News! What a gift to us all! Loe, Martha


  3. Avatar February 2nd, 2012 at 7:33 pm peg and mike Says:

    YEAH!!


  4. Avatar February 2nd, 2012 at 10:14 pm Chip Says:

    Jess -

    Do you remember back in the early days of HBO when there was a show called Not Necessarily the News and in it there was always a segment called Sniglets where they made up new words for things that don’t have words to describe them but should?

    That out of body experience you are having is a “cytogasm”.

    Chip