Saturday, January 29, 2011


My visit to Nashville is almost up, and I wanted to post a few more photos showing off the 60+ degree weather we (finally) had here in Nashville today. Sorry to all you readers up North.

My last day here has been one of the most 'normal' mom has had so far. We had brunch with Meaghan and Mary Lynn at Meaghan's (Peterson/Edwards) apartment here in Nashville. We got some good girl talk in. Although talking got in the way of mom drinking her two liters of water per day, it was worth it.

Pat/Dad was here by the time we finished visiting. After mom took a long nap, the three of us went for a walk around Radnor Lake. It was the longest walk mom had taken in a while. She was tired enough that I offered to carry her piggyback to the car by the end, but she didn't take me up on it.

Luckily we took a few photos before we were too pooped to smile.

Thursday, January 27, 2011

Fast Times at Vanderbilt Village

Well it's day 41 here. Mom is feeling better and looking great.

The test results have been coming back good enough that they've been reducing some of the meds. We're currently down to 19 pills a day. Woohoo!

Energy levels are still fairly low, but it seems like that's residual from the chemo. It could also be the gray sky that's been hanging around Nashville all week. But on the bright side, the current doctor on rotation had met mom for the first time last Wednesday and reintroduced herself yesterday because mom was such a different person (last Wednesday was not a very good day). So we are feeling good about that.

They keep saying that if you try to track progress day by day, you'll get depressed. They suggest tracking progress week to week instead. This gives me a convenient excuse for not having posted an update earlier...

Despite low energy levels, mom's been staying awake for full movies--I can't remember the last time she's been able to do that. We've begun a bit of a movie marathon here.

This week we've seen:
Sunday- White Oleander.
Monday- Sunshine Cleaning.
Tuesday- The Fighter (at the theater- with popcorn!).
Wednesday- Appaloosa.
Thursday- we're heading to the theater to see No Strings Attached.

This photo should be taken as a strong endorsement for the iPad. We passed the time at clinic yesterday watching Modern Family (one of the funniest shows on tv these days if you ask me).

And she's allowed to eat at restaurants if she's careful about what she orders (everything cooked) and if we don't go at peak times. We thought of many of you (and dreamed of margaritas) as we walked to Taco Mamacita yesterday.

Thanks for the notes, calls and care packages. We're almost halfway there!

Saturday, January 22, 2011

Day 36

As you may have noticed, my main blogger has returned to his life in El Salvador, so keeping you updated is now up to ME. I'll do my best, but don't worry if updates are less frequent.

I'm sending all my friends and family big hugs from me - the cards, care packages, phone calls, emails, and prayers for healing are invaluable as I continue to move through this process. The doctors say that this phase in SCT recovery is a hard one emotionally because it tends to drag on and on. I definitely understand what they mean about that! Once again, however, I'm stopped short in my complaining.  When the results from the Day 30 tests came in, the news was just short of miraculous.
  • No sign of MDS in the bone marrow - zero, none!
  • My T-cells are 100% donor produced, which often doesn't happen until Day 100 and might not occur before a full year has passed!
  • My B-cells are 80% donor produced, which is well on the way to 100%.
  • No chromosomal abnormalities were found!
If I didn't feel so crummy most days, I would have jumped for joy. As it is, I had to settle for feeling thankful and hopeful that such good early signs mean a successful transplant.

It has been fun this last couple of weeks having friends become my caretaker. Since I wrote about Jennifer spending the night several weeks ago, Pat P. was here for 2 days before my college friend Emy came for 10 days. Both gals cooked up some culinary delights, and my jaws are a little sore from all the talking!  While Emy was here, she was treated to some good days with Wanda and a few not so good days. She was a real trooper, and it was great to have time to catch up, even though the circumstances for our visit weren't the best. I was glad for Emy that she was able to see a couple of friends with VA roots who live in the Nashville area while she was babysitting me.

Pat cooks in the apartment's gourmet kitchen.

Emy and her dog Rosie at the park.

Monday, January 17, 2011

Day 30

I bet some readers of emails from Wanda's Warriors have wondered if all is still well in Nashville. Others may have figured out that Callie and Kit are back at work and Case has returned to El Salvador and to his life and work there. The latter statement is true. I am now in charge of the blog and website, which may slow the posts. I can still talk (write) a bunch, but I am not as fast with the technology. I have some fun pictures, but will I ever figure out how to post them? Maybe I'll just send them to Case and get him to do it? Uh, and how do I do that??? Oh well. 

Things here continued to progress as expected. So far, I have not run a fever or had a rash. Those are two signs of GVHD. I have, however, continued having the headaches and the accompanying nausea, which means it is hard to consume a balanced diet and drink the required 2-3 liters a day. Nothing tastes like it should, and when you add a little nausea to the mix, it would be accurate to say eating is not my favorite activity. Imagine that! I'd like to keep the part about chocolate tasting like dirt, or worse, but it would be nice for water to taste like water.
This weekend was a cause for celebration. I can go out to public places now if I wear my mask and if i go at times when those places are less crowded. Saturday, Emy, Pat, and I went to see True Grit. I felt almost normal. Then this afternoon after Pat returned to C'nooga, Emy and I went to Cheekwood, a botanical garden and art gallery in west Nashville. We did a hike through the woods around the mansion on the sculpture trail. It was fun to walk, climb a few stairs, enjoy the artwork. 

I am a little stir crazy, and I am tired of feeling less than 100%, but I am keeping my eyes on the prize so you won't hear me complaining, at least not TOO much.

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'.

Tuesday, January 4, 2011

Day Off

Mom and I arrived in Nashville on Dec. 6th and began our daily trips to the clinic on December 7th.  Every day since then we've spent 3-4 hours in the clinic, except for the 3.5 days that were spent in the hospital.  Before you ask, yes, that does include weekends and holidays.  But alas, tomorrow, she's earned her first day off because we have ENGRAFTMENT!

What is engraftment?  The clinic defines it as three days in a row where your neutrophil counts are over 500.  It basically means that they are confident that the donor's cells have taken over and are producing adequate blood cells.  Mom's platelet counts are higher than they've been in 2 years, and her white blood cells and neutrophils are higher than they've been in 2010.  Her red blood cells are slowly recovering as well.  Before you break out in applause, you should know that there's a new demon in town.  <cue: dun dun dun> graft-versus-host-disease.

As we've said before, GVHD can wreck havoc on your gut & skin, and we don't yet know what the nature of this beast will be.  To prevent out-of-control GVHD, she's on immunosuppresants, which also means that she's still more susceptible to diseases, even though her white blood cell counts are normal.

Tomorrow will be a day for mom to sit back and enjoy her new found (albeit hairless) life.  We hope that in the days and weeks to come, GVHD will be strong enough to kill all the bad cells in her body, but not so strong that it causes any major setbacks or becomes a chronic condition.

Saturday, January 1, 2011

The Wait Is Over!

From the beginning of any chemotherapy treatment, every woman and plenty of men ask the question, "Will my hair fall out?" Even though it's thin, fine, and perhaps gray (Who knows?), it MY hair, and I've become attached to it, not to mention the fear of the unknown. After all, who knows what might lurk beneath?! The folks around here had assured me that it would surely come out, so this week's drama could be called "Waiting for the Hair to Fall."

As you can see in the picture below, my wait is over. They said about two weeks after the thymoglobulin, which was Thursday, and sure enough, that is when the assault on my blonde tresses began. I'm not as bummed as I thought I might be. After all, this marks another milestone that I can click off, and every milestone I pass means that I am moving toward recovery and coming home.

Guess what I'm doing. That's right, I'm pulling my hair out--literally!
This is the angriest face I could make and still keep my mouth shut.
A few friends who were in the area for various events this holiday weekend stopped by to wave. It was good to see people from home, even though everyone who stopped by had been around small children and therefore couldn't come inside and visit. Many of the visitor restrictions will be relaxed a bit as I move toward engraftment, which should occur sometime this week as the stars appear to be aligning (ie. the blood counts rise).

The Taintors, including Pat, Kit, Case, Sophie, and me, but not Callie and Mike who had to go back to Boston and work, were at the apartment for a quiet family New Year's Eve and Day. We played games, watched football, talked, and ate collard greens and Hoppin' John. Kit returns to Denver and the snow tomorrow, and Pat will be trekking back to Chattanooga, leaving just Case and me for a few days.

I hope everyone had a great holiday weekend.  This New Year's has me a little anxious about 2011, and so I am putting you all on notice: my New Years Wish is that I will celebrate the end of 2011 and the beginning of 2012 knowing that post-transplant life is the best it can be.