Wednesday, April 6, 2011

Day +9 - Starting to feel more cheerful (by Susan)

Today both George and I are feeling more optimistic and cheerful than we have been.  George's counts still have not gone up - they are pretty much in the basement.  He escaped getting a transfusion of red blood cells by .5 today (his red cell count was 24.4 and he gets a transfusion if it goes below 24).  So we had a relatively short day at the blood center.  However, his stomach and mouth are starting to feel a little bit better.  George actually ate a normal breakfast and lunch today, and while he didn't enjoy the food, at least he didn't feel like throwing up when he ate it, which is a lot better than he has been doing.  The doctor told us today that it's possible his immune system is starting to come back, but it's working on his stomach and mouth first before going back into the bone marrow.  The bottom line is that George is feeling the teeniest tiniest bit better, and that's reason to be cheerful. 

The infusions are going well at home.  I have turned from a quivering, anxious wreck into a calm and competent professional in just two days.   I was able to get up at 5:30 this morning and get everything set up so George was getting his antibiotics by 6:00, no sweat.  But I do have even more respect for the infusion nurses who do this job so calmly and cheerfully.  They are real rock stars, in my opinion.  We are getting to be friends with all of them. 

They have a support group for transplant caregivers at Presby St. Luke's once a week - it is run by a staff psychologist and a young intern who's in psychology graduate school at D.U.  I always feel better after going to this because it gives me a chance to see that everyone who gets transplants goes through probably the toughest time in their lives.  It helps to feel less alone in this.  You do hear about all kinds of crazy things happening from the support group - like the guy who got up and stepped on his infusion line and yanked it out of his chest and had blood spurting all over the place, people curled up in fetal balls because they are in so much pain, people who are so tired that they have to take a nap after taking a shower, and patients who will NOT follow their caregivers' instructions (that sounds familiar). 

Listening to all of these stories makes me realize that George is doing really well through all this.  He's been able to get out for one-mile walks just about every day, he is still working on his program for the Android, he still has enough energy to joke around with the nurses and tell me he loves me every day. 

I told the Caregiver Support group about Josh's idea for "One Fun Thing" each day, and it really resonated.   So, Josh, you have started a movement!  All over the city we have people trying to find One Fun Thing to do.  Today our One Fun Thing is that George is going to have virtual dinner with his biking boys by using the Face Time application on his new iPad, and Kyle is coming over so I can go to yoga class.    It really helps to have something to look forward to.


  1. So maybe Susan should go to med school after all? Why not - she's amazing! Very glad to hear that Geo is experiencing an uptick in the energy department. Sending tons of positive energy in your direction.

  2. One fun thing a day! I will start it here too. Good to know you are making time for that in the midst of this toughest time.