8 ½ Months and Counting

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.