Caregiver's reflections back on day 30

First,  a huge thank-you to Beth Lindow, Dizy Brown, Susan Johnson, Mark Schurdevin , and all who helped pull off  the Fund raiser at Backstreet last Sunday. Sure were a lot of grey hairs in the photos I saw, and everyone was smiling. The spirit exemplified is what really makes Beaufort the "Coolest Small Town in America".  Congratulate yourselves. Personal Thank-Yous, to follow.

After the Jump,  Anne's take on the transplant.






Ella Fitzgerald , today's soundtrack

Hi to all you blog-followers,

 We just celebrated day 30 yesterday.  As Hugh Blackwell said in response to Chris's post....he is 30% full. I thought about having a "drive in" movie date.  An outing where Chris wouldn't have to walk too much.  We could sit in our car, have a picnic dinner, hold hands, and see something on the big screen without risking infection. No drive ins could be found. They must be a thing of the past. Today's teenagers don't know what they're missing. 

 Time seems to go by quickly and the days are full. Chris gets daily attention at the clinic and I do whatever I can to keep him comfortable. He sees 3 clinic personnel a day, the nurse who takes his vitals and draws his blood for daily testing, the nurse practitioner, and the doctor. They scrutinize the blood results and make adjustments to his meds, watching him carefully for signs of host vs. graph reactions, viral or bacterial infections, and any other side effects that need attention. The medical staff at the ABMT clinic are all courteous and brilliant and take special care of Capn Chris. They are becoming our family away from home.  Chris is usually at the clinic for 3-6 hours. It just depends on the day's treatment. Sometimes we are just waiting. Waiting for the blood results, waiting for the daily visit by NP and Doc, waiting for blood or other IV needs, or waiting for some other professional to come and poke, ponder, and prescribe. Sometimes Chris is not as forthcoming with his issues, so I'm glad that I'm here to intercede. 

 There are many post stem cell transplant issues that Chris is working through. He has host vs. graft complications that are showing up as skin rashes. It's been referred to as "recall phenomenon" where any sunburn or other skin surface injuries that he has had in the past resurface as skin rashes. He also has a mild form of neuropathy on the bottom of his feet and hands. This makes it hard for him to walk any distance and he can't flex his fingers freely. It is getting better though.

  We watch the blood counts daily and witness a roller coaster of counts going up and down. His white counts are better than they have been for nearly 2 years, but we're patiently waiting for the reds and platelets to follow suit. This is evidently the norm as his blood and the donor's blood decide who is boss.  He is tired and sleeps a lot because his body is working overtime from the inside out to rebuild itself. In spite of it all, Chris has such a good attitude and still manages to joke with the staff.  He was singing a hymn with one of the nurses the other day. It brought tears to my eyes to hear their voices harmonize while vitals were being taken. Can't help loving that man of mine! 

 What about me?  Well, the caretaker is holding her own. I have more energy now and I'm finding time for "respite". A walk in the Duke gardens, a trip to the mall, laps around my apartment complex, trips to Whole Foods, or just exploring the surrounding area help me to step away for a little while. I usually take some time during the clinic visits since I can't leave Chris for more than 15 minutes when we're home. While at home, I'm there for Chris. I apply topicals to his rashes, administer his oral medications, wash his peeling back, put drops in his eyes, prepare meals and snacks that are nutritious and hope that he will feel like eating them, keep our apartment clean and sterile, and give out some tough love when he needs to do  the things that he doesn't feel like doing. 

Annie

Wife and Caretaker Extraordinaire