T+175: Some Bumps in the Road–a Message from Kathy

Hi Everybody,

Some of you may know that I have had a rough few weeks, a lot of good
days but more increasingly bad days.  It involved a lot of eating,
tasting and GI issues, without going into all the gory details.  This
past Monday I broke out all over with a serious case of hives, itching
and painful hives.  I went to Hopkins on Tuesday and they took a skin
biopsy and gave me a prescription ointment and a pill supposed to be
stronger than Benadryl.  Nothing helped.  Thursday I started puking.
During one puking session I fainted and fell to the floor like a rock.
I managed to bruise both knees and break the middle toe on my left
foot.  Larry heard the noise, asking where are you?  I weakly replied,
on the floor in the kitchen.  After much panic setting in, I was
finally able to let Larry help me to the couch.  I now hobble around
the house with a taped up couple of toes and one crutch.

To make a very long, chaotic story short, we went back to Hopkins today
(Friday) where they checked over.  The skin biopsy showed that I was
having an allergic reaction to “something”, most likely an antibiotic I
had been taking for six months.  This was causing a lot of problems.
They said a person can develop an allergy to something at any time,
even after long-term use.  They took me off of that pill and changed
the antibiotic.  Also, they determined I have chronic Graft vs. Host
disease.  A little of that is a good thing, believe it or not, because
it shows that my new immune system (which came from Kellie’s marrow) is
fighting foreign invaders (my old marrow).   I am 70 percent Kellie and
30 percent me, which means it’s not 100 percent Kellie yet.  And if it
never gets to 100 percent Kellie, that’s okay as long as my counts
remain stable.  I can live with that scenario, according to my doctor.
But GVHD can cause a laundry list of physical annoyances.  They just
don’t want it to become severe.  So there is a fine line to keeping it
under control and not giving me too much medicine so my immune system
is further weakened.

The main line treatment is low-dose steroids, in my case Prednisone,
for as limited time as possible.  In my case, maybe three months.
There are a lot of other nuances to this which I won’t go into, but we
are praying that this change in meds will do the trick.  Like I’ve said
before, it’s a marathon, not a sprint.    Thank you all for your
prayers and support.  I AM hanging in there, even if sometimes it’s
only by my fingernails.  I hate to feel sick (who does?) but I am
particularly grumpy when it happens to me.  Larry is a saint.
Sometimes he can only watch what’s happening, not being able to do
anything about it.  I, on the other hand, start yelling that I want
this situation fixed and I want it fixed NOW!   I have quite a bit of
my father in me, the spit and polish military man — and the extreme
stubborn attitude of my mother.  It has served me well through all of
this.  And Kellie says, Mom, you’ve got my good marrow now, and it’s
STRONG.  And prayers have certainly served me well too.  I’ll be in
touch again soon.

Love to all,
Kathy

 

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6 Responses to T+175: Some Bumps in the Road–a Message from Kathy

  1. Reblogged this on notforallmarkets and commented:
    There are battles and there are battles, but every one of them are fought by heroes.

  2. Diane OHara says:

    My best wishes for your continuing recovery…..Diane O’Hara

  3. Jeh636 says:

    Kathy, way to go kiddo. Like that reference to Uncle Bill. He’s watching over you I am sure. Love you and am thinking of you.

  4. Jeri Tanner says:

    I have loved reading your well-written and helpful journal, Kathy and Kellie. I feel like I know you both! My brother was diagnosed with cmml2 this past Thanksgiving and we have been on an emotional and physical roller coaster since. It was helpful reading about your BMT. I hope all is going well– I prayed for you, Kathy. Many blessings.

    • kscottmullins says:

      I am so glad our journal has helped you. There doesn’t seem to be a lot of information out there anout CMML! I am sorry that your brother and family are on this ride. I will send you a private message so you can contact us with any questions you might have. I need to post an update, and it will be a good one. We are 9 months post transplant, and there is no sign of leukemia. Mom went back to her studio art class yesterday for the first time since April! Thank you for your prayers, you will be in ours too. Kelie

      • Jeri Tanner says:

        So glad to hear your mom is doing well. I appreciate the offer to contact you with questions; we’re only just learning which ones to ask, as I’m sure you remember. Thanks.

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