Dog Days of Summer

Case tells me that it has been a long time since I have posted on the blog.  Did you assume that life was just uneventful?  Did you think maybe I had expired and you just hadn't heard?  If your answer to the first question was YES, you are right!  Here's an update for those of you I don't see around town!

Every week since I have been home from Nashville, I have observed tiny steps of progress toward becoming my old self again.  Some examples:

1. I just finished six weeks of therapeutic massage.  That, combined with returning to workouts with Karla, the trusty exercise guru, and the steroids that I began taking several weeks ago (for GVHD), has resulted in much less arm pain and better mobility.
2. The doctors are having me taper the medicines.  I am off the Celcept -- no problemo.  Then we started on the GenGraf.  That is when GVHD reared it's ugly head.  Steroid medication is the treatment of choice for GVHD.  It works, with the added benefit of helping my arm muscles relax and feel better.  The negative it that I'm starving all the time and gaining weight.  Ugh!
3. I am beginning to have more energy.  I finally put the rest of the stuff away from the Nashville apt.  I even had Pat help me clean out our"nothing" room, which lately has been our "stuff it" room.  I'm getting up earlier, not napping as much, and sitting around less.
4. I still cannot drive due to continued medications.  This is a real bummer.  I really thought I would be driving by now, but alas.  Pat and my friends have been great about carting me around, but enough is enough.  Hopefully, I'll be driving in another month or so.  It all depends on GVHD as I continue to taper off the medicines.
5. I have been out in larger groups lately, but it is summer time, we've been outdoors, and the groups have been all adults.  I don't know what restrictions I will have once it cools off, we go inside, and cold and flu season starts.  I know that the doctors are not ready to release me to return to school this fall---maybe after the holidays.  Who knows?

That's all there is to report.  I haven't been anywhere or done very much, but I am blessed by feeling just a little more like myself each day.  I go back to  Nashville monthly, and this Fri is my August appointment.  I am hopeful for a good report!

To all you my friends that are starting a new school year I sent special thoughts.  It is very weird to not be focused on a new school year right now. Guess I could read some of those professional books on my shelf...

Love you all,
Wanda

April

May

Mid July

Home at last

You might have noticed that the long awaited Day 100 came and went without much hoopla from me.  Case blogged a week or so ago to inform my special friends of the "bump" that came up on Day 95 with respect to my white blood cell counts. That week reminded me of the Limbo--how low can you go? Amazingly, as of last Wednesday, those unpredictable counts were back in the normal zone.  I will have them checked here in
Chattanooga tomorrow.  Here's hoping they are still at an acceptable level!

No matter, the acute care SCT clinic has dismissed me to the long term clinic.  I have an appointment with Dr. Savani, my personal favorite member of the SCT team, this Friday in Nashville, of course.  If all is well, I may not have to make the Nashville trek for a couple of weeks.  That WOULD be nice.  Meanwhile, I am still concentrating on drinking enough liquids and building up my energy, which seems to be at an all-time low.  I think I will be more and more active as the weather warms and I adjust to a new routine with different possibilities.

Today was the first day since Thanksgiving that I have spent the entire day by myself.  It might get lonely since I still cannot drive, so I would welcome phone calls, visits, or a walking companion on nice days.  Just give me a call! This process is a long one.  Thanks to all of my friends who have hung in there with me with their prayers and good wishes.  Keep 'em coming. I do see a light but the fight isn't over yet!  It's great to be home!!

Bump

Case here. Today is day 98, two days before the day 100 that has been the 'light at the end of the tunnel.' Just when we thought we could make it through the 100 days being as boring as possible, we've hit a bump. Mom's white blood cell count had been hovering around the 3.5 range, which is low, but considerably better than where she was pre-transplant. The doctors had not been concerned though, because there were no other issues and it was holding steady. Starting with the lab results last Friday, her white blood cell count has dropped to it's current level of 0.9. This, as you would imagine, has been cause for concern. The clinic ran a battery of tests and sent off a blood culture to see if they could figure out what was causing the drop. No culprit has popped up, so we're stuck trying to figure out what's wrong, and hoping that it will improve. Mom also received the results from her latest bone marrow biopsy which still says that she's MDS free, but made mention of the biopsy being "mildy hypo cellular," something that doesn't seem to concern the doctors, but has added to mom's anxiety. As you can imagine, mom has been bummed this week, even though the doctors do not seem to be that concerned.

Please send your positive thoughts and prayers her way!

Looking Back

These last 85 days (plus 10 pre-SCT days = 95 full days of treatment) have added a plethora of knowledge and fresh observations to my life experience, such as

• Yes, Denise, American Idol is fun (Did you hear ST use that big word?).
• Wind and wigs are a scary combination.  I almost lost my hair all over again in a strong and chilly wind yesterday.
• You can learn a lot by sharing life stories with a plethora of fabulous friends, especially when there isn't much else to do.
• Numbers can be confusing,  They want magnesium levels to be high and creatinine levels to be low.  How confusing!  Why can't they just pick high or low and make it easier on everyone.
• BORING IS GOOD.  Now this one has been the hardest to really believe.  But that is a direct quote from my doctor, so it must be true.  Seriously, boring IS good in the world of stem cell transplants.  My life has been a little dull of late by most people's standards, but that's okay.  In this case boring means things are going very well indeed.

Two more weeks until they begin to loosen my leash.  I hope many of you will keep me from getting bored by stopping by to chat once I'm home for good.  That will be after the March winds, so maybe I will be able to hold onto the hair!

Less than 25 days and counting!

Now this IS ------ THE FINAL COUNTDOWN! And I am beginning to think about life beyond my Nashville apartment, which is kind of scary since with the 100 day celebration will come the reality that I might have to start taking care of myself, Pat, and my normal life routines sooner than I would like! You see, reaching Day 100 does not mean I miraculously will feel myself and will be at 100% of my energetic old self (my caretakers think I'm about at 25% of my normal energy, with somedays less). But after Day 100, I will be at home, thank goodness, with bi-weekly trips to Vanderbilt. I won't be able to drive due to continuing meds, but I will be tapering some of the medications, which might help with energy and feeling good. And I will be able to visit with healthy friends in small groups - that will be the best part!

Meanwhile, it's more of the same. Getting down enough fluids continues to be challenging for me and my caretakers have to be on me constantly. Maybe warmer weather will make it easier. I am constantly reminded of how lucky I have been during this process - it absolutely could have been a devastating experience, so my little aches and pains seem trivial. I will say, however, I do look forward to sunnier days ahead!

Day 60 Day 61 Day 62 Day 63

The days are flying by now that I'm on the downhill side, and I even got to go home last weekend! I rode back to Signal Mountain with Leeann on Friday afternoon and did not come back until Monday afternoon, in time for my 8:00 AM clinic visit on Tuesday morning.  Pat and I kept a low profile ( I didn't go out of the house on Saturday!).  I must admit I was a little nervous about it and did not want to come back here with an infection or a fever.  I am trying to keep up my unbelievable record of no days in the hospital and no steroids or transfusions, and you guys know how competitive I can be!  Guess I will be coming home most weekends now as long as I don't get sick or show signs of GVHD.  And, as the weather gets better, I'm sure I will be getting out more on the weekends at home. I look forward to seeing my many friends on Signal Mountain as the Spring progresses.

Wish I could say that all my "free" time is productive.  I am still walking whenever it is not snowing or too cold.  I still take a nap every day.  Currently, I go to clinic twice a week, which can take up to four hours, and I will be starting PT twice a week on my shoulders, which have been bothering me for the past month or so.  Otherwise, I talk, I eat, I sit.  I have no movie reviews this week, but I am ready for the Academy Awards this year with all my personal picks.  I haven't been motivated to read or write, and knitting takes more concentration than I seem to have right now.  Sitting is good, I think!

My caretakers and I try to make the most of each day.  Last week I made Leeann help me with some facial waxing.  It was a hoot, and something for her to add to her book of lifetime adventures.  It seems my donor might have passed on a little facial hair to me - we'll see.  Since the weather has been springlike this week, Martha and I have been able to walk a lot.  My legs are still fairly strong, but my arms . . . let's just say that Karla, my friend and trainer, will have her work cut out for her when I am able to return.

Otherwise, not much is new.  The doctors have praised my progress so far and that makes me feel good.  On Day 60 they draw drew blood for some detailed testing, but I won't know the results until next week. Most days are routine and unexciting (hence there is not much to write about), looking back over the weeks, I can certainly see the progress I have made. I am hopeful that the weather will stay no colder than "cool" and for the next 5 weeks to unfold uneventfully.  In this situation, boring is good, and I look to the positive - springtime in Nashville will be beautiful, and I don't have to worry about my yard so I can just enjoy everyone else's.

Leeann performing her caretaker duties . . . laundry???  Guess we didn't tell her about that!

Leeann packing the care for my first trip to Signal Mountain since December 6.

We worked a Yellowstone puzzle and dreamed of good hikes and great sights.

Martha and I walked A LOT this week.  Maybe I should wish for winter excuses . . .

Day 51

Yes! Finally I'm on the other side of the, uh, hill? Why is that
GOOD, or even NEW news? Day 51 means that I've been at Vanderbilt
University Hospital for 61 days, and that I am over half way into my
100 day "watch and wait" after transplant. I still have to go to the
clinic, but I go only two days a week now unless complications arise.
The headaches are better, but not gone. The nausea is better, but
not gone. I have a few achy tendons, which are a nuisance because I
cannot take anti-inflammatory medicines--they mask fevers. My biggest
complaint is that my energy level is running a little low; that can be
frustrating, especially when I want to do more than I have the stamina
to do. They tell me that my energy will come back - something about
being patient...

Last week my caretaker was Imogene (aka Mighty 'Mo). We talked so
much that I forgot to take her picture slaving away over the kitchen
stove. For our break from chatting and eating, we saw Blue Valentine,
Ladies No.1 Detective Agency, and Hangover.

Pat comes every weekend. We watch movies, too. We've watched classics
from a friend's library--Vertigo, Tootsie, The Maltese Falcon, to name
a few, and one we'd never seen, A Night to Remember. We also watched
a good foreign film, Nowhere in Africa. Since I haven't been
interested in reading, it has been great to have movies to pass the
time and entertain. I am really ready for the Oscars this year.

This week I am "playing" with Leeann, who came on a big plane from
Jackson, WY. We are going to plan my next adventure to her little
piece of paradise. She brought a Yellowstone puzzle to get me in the
mood.

The posts have slowed because there is not much to report. Now it's
just a matter of perseverance and healing this drug-poisoned body. I
have done so well, but my little gripes and pains are just to remind
me how serious this procedure is and how lucky I am. Prayers can do
so much, and I thank you for continued prayers for my return to
energetic LIFE.

Adios

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.

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!

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.

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.

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'.

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.

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.