I know my posts have been few lately, but I spent two days
at MDAnderson this week and got some news to share. The good news is my T cells that have been stubbornly
hovering at the 60/40% rate have jumped to 78% donor cells! The continued reduction in the
immunosuppressant drugs is obviously doing its job.
The less good news is that my bone density test came back as
having osteopenia (the step before osteoporosis). It is not uncommon for patients who have had chemo and
steroids to have this, plus my mom has osteoporosis and RA so I’m a prime
candidate. The weird thing is that
my calcium level is high. So on my
next round of labs they’re going to run a PHT (?) test. I think it checks why I’m not absorbing
the calcium. They have already
sent me to a rheumatologist for consult.
More doctors…. The main
thing that I need to do is get myself up and exercise! That seems to be the best
treatment along with vitamin D.
The depression is better. Not perfect, but better. After my lift around Christmas, I had another low and
finally filled the prescription for Wellbutrin. I have not had any side effects. While it’s not working miracles, I am better able to get out
of bed in the morning and get through my day. So maybe it is.
I watched a video of Caleb, my grandson, and me doing wheelies on a
little 3-wheeler that was taken before I got sick. It was hard seeing my energy and laughter. I want that back…now. I talked to Paul about it and he
assured me that I would get back to that.
It just takes time.
For those of you walking this walk, don’t be surprised by
joint pain that is similar to how it felt when you got Neupogen shots. My doctor said it was because of cell
growth. My shoulders, arms, elbows
hurt most of the time. I’m sure
that this will go away just like my hair loss did. But for now it is most uncomfortable.
On the positive side, after a year of hassle, we finally won
our Social Security battle. It’s
not much, but it will definitely help with the mounds of medical bills. When we went for the hearing, we
expected to go in together. When
they called me in, they wouldn’t let Paul come in, so I had to face the judge
by myself. I almost cried, but I
answered the questions and got it done.
The latest weird thing is this invisible itching at night
and inability to sleep. Don’t ask
me. I don’t think this one is even
in the medical journal.
But the sun is shining. God has given me another day. And I know that one of these days I’m going to feel like me
again.
