Sunday, January 9, 2011

Day 23 and the Hens

This week we celebrated engraftment, the downside of which is that our watch for GVHD (graft-versus-host disease) is now stepped up a notch.  The doctors continue to be confounded by difficulties in regulating the GENGRAF, which is the drug that is used to suppress the immune system so that the donor T-cells don't instruct my body to attack itself.  I have gone from 800 mg/day to only 225 mg/day, which is fine by me since GENGRAF is the major culprit of the headaches and nausea.  I am hopeful that they will find the right formula this week, although that formula has thus far been illusive.  Some of the blood and kidney function readings at the end of the week were of concern, and I'm hopeful that those concerns will resolve themselves this week.  Case has become a taskmaster about fluid intake, so maybe if the kidney numbers improve, he will call off the dogs.  They want me to drink 3000 mL of fluid every day.  I feel like all I do is plan for my next drink!

Today is Day 23, which means next Sunday is Day 30.  Day 30 is when the doctors request testing to determine the status of the transplant.  Thursday I am scheduled for yet another bone marrow biopsy which will tell them the percentage of blood cells that are being produced by the donor cells.  Day 30 is a big milestone, so I ask your prayers and good wishes not only for improved regulation of the GENGRAF and lower creatinine counts, but also for positive information from these Day 30 evaluations.

I met another milestone this weekend.  I had a hen party (with only one other hen--my friend Jennifer).  She is the first non-family caretaker that I have had.  Jennifer was kind enough to come over to Nashville Saturday and spend the night so that Case could go to Chattanooga to help Pat with some technical and practical things at his new office.  Jen and I talked and talked, made some chicken chili, and watched a movie.  It was good to visit with her and catch up on what is happening in the world outside of this apartment and the Stem Cell clinic.

Jennifer's visit was the first step in the "changing of the guard."  Case will return to Chattanooga on Tuesday afternoon, help Pat with phone installations and such on Wednesday, and catch a plane very early Thursday morning for El Salvador.  When he leaves Chattanooga on Thursday, he will have been with us (mostly ME) for 6 weeks and 2 days!  That's a long time to be away from home.  I will certainly miss him, and I am so thankful to Sophie for sharing him with me so generously.  I know both he and Sophie will be glad to return to a more normal life in their tropical paradise (75 degrees and sunny EVERY day, Pacific Ocean 45 minutes away-I cannot imagine that he wouldn't you rather stay in chilly Chattanooga with his mother).

So who's going to take care of me once Case leaves?  Well, this week I will have my Chattanooga friend Pat P for a couple days before my college friend Emy comes to Music City to stay and play for a little over a week.  I am looking forward to having special friends help out as deputy caregivers, but I hate that I can't promise them that it will be fun.  If I feel good, we can walk and perhaps see some Nashville sights (if I wear my mask and if the attraction is not crowded), but if GVHD or an infection sets in, my caretaker and I might end up spending a night or two in the hospital, which would be a bummer for everyone but realistically might happen.

Husband Pat will be the primary caretaker from here on out, taking weekend duty and being the backup should someone get sick or if life gets in the way of best laid plans.  The clinic likes for SCT patients to have as few caretakers as possible, but unfortunately, Pat, Kit, Callie, and Case all have jobs that would be hard to walk away from for 3+ months, so we are doing the best we can.  Personally, I am looking forward to spending quality time with friends; I think having variety is nice.  I'm just hoping for as few bumps as possible and that friends don't have to deal with stressful situations.
Stylin' in Scarves
Wanda's Wigs Work

Jennifer & Wanda with Wanda's new friend, Ivey, her home health companion
Thanks for all your cards, letters, emails, and calls.  They mean a lot and help the time pass.  Keep 'em comin'.


  1. I say call yourselves "hot chicks" not hens! :). You look so good, Wanda, and I know it is fun working out "the changing of the guard" and seeing friends. What a blessing your children are, especially Case. And, I know you and Pat will appreciate the time together. You are one third of the way there!! Something to celebrate in itself! Thanks for the continued updates. It's keeping the rest of us going! I do hope you are able to get out and about some this week if you are not snowed in:). Stay warm ad fuzzy! Love to you and family!

  2. So, Ivey (I.V.?) and you have the same taste in clothing? Who says that a woman can't wear pink and red together? LOVE, LOVE the wig. It's a little longer than your hair was the last time I saw you, and definitely longer than the deer's! You have such a great face that any hair or scarf style is flattering. I'm guessing you're making other clinic patients jealous . . .

  3. Looking great in the scarves and the wig! I hear you're getting snow up there - stay warm!

  4. Looking beautiful as usual!!! Brace yourself for the might be a dooozy (?). Special prayers this week for Day 30! Stay warm and sickness free. Love you!

  5. You are gorgeous, no matter what. I am in awe. Sending healing thoughts and prayers: seeing GENGRAF regulated, levels where they belong, and Day 30 as evaluation perfect. Love you. Edrie