I am starting this post with the medical info that might be
of interest to the majority of those who have been following our journey this
past almost two years. The rest
will focus on progress, accomplishments, and the return to the simple joys of
living. There are things that I
don’t want to forget. And for
anyone who is beginning or in the middle of a similar journey, I would like to
encourage you that it does get better.
There are weeks and months that it seems like it never will…but it does. The difference a year can make!
A couple weeks ago, I had gotten some preliminary results
from my one-year tests. Yesterday,
I got the official results. My
T-cells, my donor cells that fight the CLL, have finally jumped from 60% to
94%!! My doctor has been weaning
me down off my Tacro little by little which has allowed the donor cells to take
over. As of this week, I am now
down to one per week for the next
four weeks. She will recheck my
labs again at that point and give me a call, but I don’t have to go back to MD Anderson
for eight weeks!! This will be the
longest stretch since this whole thing began. I may have withdrawal symptoms! :)
She also had good news regarding my kidneys. My creatinine levels were good and some
of the other numbers that had been unusually high a month ago have all come
back down into the normal range.
While there probably still is some measure of damage which will
continued to be monitored, I am not in any danger at this point and just need
to continue to drink LOTS of water!
And since the culprit seems to have been my Tacro, the fact that we’re
almost done with that is also positive.
So that was very good news.
The last question I had was in regard to my immune
system. While it is still low, it
is improving. It is quantified by
my lymphocytes, which will be the last aspect of my white blood count to come
back. They continue to be low…but
slowly growing. She tests this by
a CD4 count. The goal is 200, and
I am currently at 181. So close
and yet still a ways away. I have been
given permission to reintroduce salad into my diet only at home when I wash it
(big win), “swim” in a very clean pool only up to my waste (no getting my face
wet), and to wear makeup (new and mine). I also got the last of my immunizations, until next year, as well as a return of thick, wavy hair. Little things. :)
My shoulder has also begun to improve due to personal
physical therapy. After the test
results came back negative, I was able to begin gardening (with mask and gloves) and I have been able
to begin doing some of the prescribed exercises. While it’s not perfect, my shoulder has definitely improved. The year of being down must have
atrophied my muscles and caused much of the problem. I am slowly rebuilding my muscle tone a little at a time.
We have much to be thankful for. There were times this past year when it was hard to see the
light at the end of the tunnel.
Thank God that He is the Light!
There have been so many milestones during the past couple
months that I don’t ever want to forget.
If you would like to share in these, please feel free. But this is for me.
Last year, we spent my birthday, Mother’s Day, and our
anniversary in the hospital. This
year, we celebrated my re-birthday and birthday weekend at our place in the
country with family and friends.
It was quite a time and one I’ll never forget! Paul and I took a week-long trip at the end of May for our
anniversary through central Texas.
We spent some time at our place in the country, then went hiking at
Pedernales Falls and Hamilton Pool, saw some beautiful scenery, stayed in a
B&B, visited a favorite winery, and ended up in San Antonio and the
Riverwalk. It was a wonderful
week! What a difference a year can
make!
Shortly after returning home, I drove to Dallas to pick up
my oldest grandchild, Dana (almost 6), to bring her back to Houston/Spring to
spend the next week with us. This
was the longest drive I’d made by myself since diagnosis. On our way back, we stopped by Oletha
for an afternoon of fishing, 4-wheeling, and petrified wood hunting…all by
ourselves! :) She caught the first fish, but Tadee had to (for the first
time since I’d been restricted against anything that might have bacteria)
unhook the fish. Another
first. We had a wonderful
afternoon and then headed the rest of the way home. That was Friday.
Saturday, we joined Uncle Josh, Aunt Kylee, and cousin Caleb
at the Museum of Natural Science and enjoyed looking at dinosaurs, the ancient
Egypt exhibit, and the butterfly center.
We took the train ride afterwards.
For a long time, I couldn’t even be out in crowds. That night during her bath, this sweet
child asked if she could wash my feet.
So I sat on the side of the tub while she gently massaged my tired, old
feet, asking me if that felt good.
Precious child. Precious
moments.
Sunday, we went to church then she helped me fix lunch,
peeling potatoes and snapping beans.
It was a rainy afternoon, so I taught her several new card games. Later we were able to feed the ducks
and fish in the pond across from the house. She’s getting quite the casting
arm! She also took a scooter ride
while Tadee and PawPaul followed behind.
Monday was gardening day. Tuesday was movie day with us and her great grandma, Mama O. Wednesday was craft day. (Craft day continued on….) Thursday we went to the Children’s Museum. Friday was baking day and ended around
the fire pit on the patio making s’mores.
Every day was filled with little extras like reading, coloring, and
other favorites. Almost every evening,
we ate dinner at the back porch table under the big red umbrella. We read, we prayed, we sang, we
snuggled, and we finally slept. We
made a lot of memories. We made up
for a lot of lost time. I hope I never
go through another year when I can’t see my babies.
Saturday, we handed her off to the next set of grandparents
for week #2. Even though I was
tired, it was the best tired I’d had all year! The fact that I could even keep up was evidence of how far
I’ve come. The difference a year
can make! We got to see Bethany,
Kevin, and grandbaby #3, Ethan (2), for a little while later in the day when
they were coming down to visit Dana and celebrate Father’s Day.
A week after having Dana, we had the opportunity to have
grandbaby #2, Caleb (3 ½), come spend the night. The next day I took him to his swim lessons and then kept
him back at his house while his daddy worked and his mom attended a class. He has an imagination as big as
Texas! We played rocket ship with
building toys that belonged to his daddy.
We played baseball as long as he got to pitch! We fed the ducks and turtles. We read books and built with blocks. Both grandbabies like the same
songs…the same songs I sang to their parents. There is something about being a grandparent, about watching
the child of your child. It is the
thing that I missed most during my time of restriction. I am so thankful to have this
back. I am also thankful to have
just found out that grandbaby #4 is on the way. :) Dana and Ethan will be getting a
brother or sister.
A year ago, we were still in our first 100 days, staying at
my mom’s, and going to MD Anderson every other day. I was having regular ER visits because of migraines and
nausea. Paul was juggling work,
me, keeping up with the house, and his own health all with never a complaint,
always completely loving. God must
have given him an extra measure of grace and strength.
It has been a long year with a lot of bumps along the road,
but by God’s grace and a lot of prayers we’ve made it!
We are grateful for these couple months of respite before our journey
takes another turn. Paul is going
in for back surgery on August 1.
It will be my turn to serve as caregiver. While my role will be nothing in comparison to his, I pray
that I can care for him in the same manner he cared for me. Of course, I won’t be juggling a job on
top of it. Please pray for successful
surgery, quick recovery (even though it is expected to take 4-9 months), and
for everything to go smoothly with regard to his work.
We are hoping that by the time our fourth anniversary roles around that maybe we can be done with all
these medical maladies!
Indeed, the difference a year can make!
