Life has been a cycle of constant motion for the last few months. Multiple visits to MD Anderson balanced with work deadlines have left me feeling several shades of tired. To compound everything, Chris was sick with a cold last week. This week, I'm sick with his cold. I'll cover how it's being dealt with a little further down.
First things first, I saw my endocrinologist last week. He noted that I am displaying cushingoid features more prominently than when he last saw me. My face is taking on that distinctive moon pie shape long-term steroid users tend to get. I have a hump of fat across my neck and shoulders. You read that correctly. A hump. My doctor verified its existence. It does happen when you've been on high-dose steroids long enough and particularly when you're steroid-sensitive. My legs are the skinniest they've ever been. Unfortunately, steroids help the body to redistribute weight. For me, I get all of it solidly around my middle. All the way around. It's like having a fatty tire permanently fixed around your midsection.
All things considered, Dr. J. gave me an A+. My thyroid levels are being controlled by daily medication. I'm still managing to take the stairs at work, thereby fighting against steroid weakness and muscle atrophy in my lower body. I'll see Dr. J. again in a few weeks just to be sure things continue going well. I'll also have another bone density scan to see what damage being on steroids for so long has done to my bones.
This week, I saw my transplant doctor. While there, I had Chris on speaker phone so he could participate in the visit. He confessed to being sick in order to alert the team to the possibility that I'd been exposed. To his credit, when he realized that he was coming down with something, he called his doctor, who in turn prescribed something to help Chris along.
My breathing remains difficult. I feel like I'm improving, but I'm nowhere near the point in recovery that I was experiencing before weaning off of steroids all together in December. During the visit, it was noted that my lungs continue to sound clear. Since things aren't getting worse and I feel like I'm moving forward, the decision was made to step the steroids down again. I'm now taking 20 mg of prednisone every other day. In two weeks, I'll step down to 15 mg every other day. The team is giving me a little break and allowing me to return in a month rather than maintain the 2 week schedule I've been on. I couldn't be happier. The drive was becoming a grind.
As for the cold, I realized that the little monster had taken hold yesterday. My head was congested and my nose was constantly running. My transplant team advised me to get in touch just in case Chris had passed along his cooties, and I definitely reached out. I'm on a 7 day course of Avantin in addition to all of the other antibiotics I already take as prophylaxis while on steroids and tacrolimus. There's nothing more that I would love to do than curl up on the couch and sleep for three days. Unfortunately, the steroids keep me in a perpetual state of wakefulness, so no naps here. I'll settle for a long weekend of cheesy movies wrapped up on the couch while the cats take turns demanding treats and attention.