T + well over a year

I haven’t driven to Johns Hopkins once this summer!  Mom has, but just for her one year post-transplant checkup, which told us she is doing really great.

I owe you Mom’s own words from last month– so here they are:

Hi Everyone,

It’s been a while since I’ve updated, and that’s really a good thing.
I have been feeling great the past six months.  It is now 402 days
since the transplant — over a year!  This time last year (2012) I
wasn’t even out of the hospital yet and feeling physically pretty bad.
I feel so grateful and truly blessed.  The love, support and prayers
from all of you have gotten me (us) through this.  And every day I
thank God for Kellie.  I still have some issues with GVHD which causes
dry eyes, severe dry mouth and occasional breakout rashes.  All of that
is expected and treatable.  Eating is really a challenge, because my
taste buds don’t work well, and I seem to have lost the ability to feel
hungry.  I literally have to remind myself to eat, because I need the
nutrition.  I feel plenty thirsty all the time, but not hungry.  I am
constantly popping sour lemon drops in my mouth, because they taste
good and keep the saliva flowing.  I think I have become an addict.
All and all, life is GOOD.

A couple weeks ago I had my one-year checkup at Hopkins.  A lot of
blood was drawn (15 vials), bone marrow biopsy (ouch), and the first
five childhood immunization shots were given.  The nurse said I would
feel “punky” for a couple days after the shots.  I don’t know what
punky means, but I definitely felt out of sorts and sore for a couple
days.  I feel sorry for little babies who get all those shots at once.
Next month I will get more immunizations.  Even though I had a lot of
those childhood diseases, I have to be immunized again.  And these days
there are more shots than ever before.

The day of the checkup, Larry and I went up to the fifth floor to the
transplant unit that had been my home for two months.  That was our
first time back.  As we slowly walked the hallway and discreetly looked
into the patients’ rooms, we marveled at how far I have come.
Everything looked oddly smaller than I remember.  When I used to do my
laps in that circular hallway, lugging my giant IV pole, it seemed
wider and longer.  We walked quietly and said a prayer for all the
patients lying in their beds, just starting on their journey.  We saw
familiar faces and hugs were given out.  The staff recognized Larry
before they recognized me.  I looked very different last year, as you
can imagine.  They were grateful we came for a visit.  They see
patients at their sickest and don’t always see them later on.  It was
in a way therapeutic for us, and everyone said I looked great.  As we
left the unit I kept thinking, did I really do this??  We saw my doctor
also that day, and he basically gave us a pep talk and told me to keep
up the good work.  He smiled a lot and gave us hugs.  Everyone at
Hopkins has been super.

It was a long tense ten days waiting for the results of all those
tests.  Yesterday my doctor at Hopkins e-mailed the results.  After all
that waiting I was suddenly afraid to look myself, so Larry read the
e-mail to me.  The first sentence – in capital letters was – NO
LEUKEMIA.  It took us a few minutes to gather our composure enough to
read the rest.  We were so relieved.  Everything looks very stable.  I
am still a little anemic, meaning the red blood cells are on the low
side.  The doctor feels that this will eventually work itself out.  And
I have iron overload, which is pretty much a common occurrence in
transplant patients because of having to receive so many blood
transfusions over a period of several weeks at the beginning.  They
will start to correct this at the two-year mark by either medication or
literally having me “give blood” on a regular basis for a while.  That
blood will have to be thrown away and not given to anyone else.
Fatigue is still a problem at times for me because of the anemia, but
my energy level has increased a lot.  I am doing just about anything I
want, but I pace myself.  I have no restrictions now, except common
sense ones like:  STAY OUT OF THE SUN; don’t be around sick people;
wash your hands and use hand sanitizer a lot; no salad bars or buffets,
etc.  I only take two pills a day now, a wide spectrum antibiotic and a
pill to keep me from getting shingles.  The doctor said I’ll be on them
at least a couple more years.  A couple more years?  It’s nice to be
talking about a couple more years — and beyond.  My hair has
completely grown back — gray of course, and thick — but it’s not MY
hair.  It’s chemo fried, course feeling and sticks straight up.  I
can’t do anything with it.  I’ve used all kinds of products to try and
tame it, but to no avail.  I expected the gray hair, but not THIS.
Kellie says I should just go with the flow, use a lot of gel and create
a “spiked” look.  I’m sorry, but that’s just not me or at least the me
I’ve come to know all these years.  So, while I try to come to terms
with this, I still wear a wig and try to figure out where to go from
here.  I think a trip to my hair stylist is in order soon.  It’s been a
long time.

I’ve always said that this whole process has been difficult physically.
But I think mentally it’s just as hard, maybe harder.  To keep your
mind focused constantly like a laser beam on getting past all the real
hard stuff, and to concentrate on getting well every minute of every
day is daunting.  And when things get too tough mentally, my family is
there to help chase those dark thoughts and fears away.  Meanwhile,
summer art classes are underway again, and I’ve got two paintings going
at the same time.  Remember, enjoy life and don’t sweat the small
stuff.  Most things in life are small stuff.  Take personal time for
yourselves doing what you love.  Everyone has heard those old sayings
over and over, but they are all so true.  And the truest one of all —
when you’ve got your health, you’ve got everything.

Love,
Kathy, Mom, Aunt Kathy, Grammy

 

This entry was posted in July 2013 and tagged , , , , . Bookmark the permalink.

2 Responses to T + well over a year

  1. Rosemary Hertsch says:

    How inspiring and beautifully written. I think Kathy should write a book.

  2. Jeri Tanner says:

    Great to see and hear. Thanks for the update! So glad things are going well for you all. May they continue for a long, long, long time!

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