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.