It's been 3 months since my last marathon day at MDAnderson, and since the length of my leash hasn't changed, it was time for another marathon day. The usual 5 hour long drive from Baton Rouge to Houston morphed into over 9 hours thanks to a bridge closure before Beaumont. Chris and I left the house at 3 in the morning to make my first appointment at 8:15. We missed that one, and the 4 after it. I missed a blood draw, visit with the cardiopulmonary nurse, pulmonary function test, a visit with my endocrinologist, and a bone density scan. It was not an auspicious start to the day.
My endocrinologist, Dr. J., was kind enough to work me in immediately after I had my blood drawn. Since labs can take an hour or more to finish the various and numerous tests my doctors like to order, he didn't have everything he needed. We were able to discuss the changes my new gynecologist made to my hormone replacement therapy. She switched me from PremPro to Seasonale. Dr. J. had originally prescribed PremPro for me after it became apparent that I was post-menopausal. I tolerated it well and it kept me feeling human.
When I started showing signs of not actually being post-menopausal, Dr. R. took me off of hormone replacement therapy. When it became apparent that I needed to restart hormones, Dr. R. switched me over to a low-dose birth control pill. The first 3 months on the new drug were brutal. I have finally adjusted and feel normal. Dr. J. explained that there are 2 schools of thought regarding HRT. He's old-school, which is why he chose PremPro. Dr. R. is new-school. I'm just happy to be feeling quasi-normal on the human front.
Dr. J. was pleased with the improvement in the elasticity and appearance of my skin. My hair hasn't grown in as well as he would like, but he's going to wait and see if it catches up. Vitamin D levels weren't available. Thyroid levels weren't available. Bone density results weren't in because I had yet to have the scan.
I was able to get in for the pulmonary function test, but the cardiopulmonary nurse was gone for the day. The only appointment I managed to get to on time was the one with my transplant doctor. She was being shadowed by 2 doctors working on their fellowships, so I was looked over by 3 transplant doctors very thoroughly. The results were finally in from the molecular study attached to the bone marrow aspiration from my previous visit. The FISH test showed no evidence of residual disease on a cellular level. This is a good thing. No evidence of residual disease means that the aspirated marrow didn't contain cancerous cells.
My vitamin D levels are still low. My thyroid is misbehaving again. Dr. K. wanted to know if I'd been feeling sluggish or depressed and if I'd been sleeping a lot. I'm in the final semester of my degree program. I'm a basket case. I don't have time to sleep. My TSH level is twice as high as it should be. Since I wasn't displaying any symptoms, Dr. K. decided to wait and see, rather than doubling the dose of synthroid I regularly take.
I still have GvHD of the lungs. I still carry a rescue inhaler and take inhaled steroids twice a day. I suspect that there is scar tissue in my lungs. I will always be more susceptible to chest infections, and predisposed to pneumonia. Let's not even get into the whole fungal infection thing. I don't know if I'll ever regain pulmonary normalcy. At least I'm still here.
My liver is still behaving, and that makes me happy. Dr. K. decided to taper my immunosuppresant. She told me to reduce my dose from 1mg of tacrolimus a day to 1mg every other day. Her reasoning for starting the taper is that the measurable level of tacrolimus in my system is nearly undetectable. At that level, the doctors don't know what the real benefit of staying on it is.
The day after I skipped my first dose of tacro, my back and stomach were covered in a rash and it felt like my skin was swarming with crawling bugs. My scalp started flaking the very next day. I think I know what that nearly undetectable level of tacrolimus does for me.
Dr. K. told me to stop the taper after Chris persuaded me to report the rash. She prescribed some steroid cream to help control the rash while I wait for the tacrolimus to bring my system back in line.
As for the missed bone density scan, I was able to get worked in after seeing Dr. K. Because it was the very end of the day, the results weren't available before we left for home.
I'll post when I know more.