I notice that working full time is really cutting into my free time, however. I've been working from home one day a week to give myself a break and a chance to stay in my pajamas, and that seems to be working pretty well. I may be in the fast lane but I'm trying not to speed. Recovering from a transplant is such a slow process, I was nervous about returning too soon. I may not truly be ready for prime time for, well, who knows how long, but in mid December, it seemed that my medical dramas were stable.
But no. A week after returning to work, a lingering on-and-off cough that has been hanging around since the summer became much worse, and I've had trouble breathing since before Christmas. I tried over the counter drugs, but as the New Year approached, I could barely breathe. I've seen my doctors three times since then, I had a CT scan that showed lots of inflammation, presumably from an infection, and I finished a two week course of three drugs. I'm now on an inhaler, which helps a little.
It's another Mystery. First I had the Mystery Rash a month after the Labor Day lung surgery, then I had the Mystery Headaches, and now the Mystery Lung Infection. The first two resolved, over time, on their own. I'm confident that this will too. I'll find out the results of a pulmonary function test (which measures lung capacity) later in the week, and we'll go from there. At least there's no cancer, no GVHD, no masses. And breathing is overrated anyway. Just keep going and carry lots of cough drops.
My other recent adventure is a little more interesting. Dry eyes is a very common condition in Transplant World for those like me who have had chronic GVHD. My doctor saw that I was a dry eye sufferer and suggested I get some bloody eye drops. Sounds obvious, right? The term is not used as in "Where are my bloody keys?" or "Oh, bloody hell!" No, he was referring to specially compounded eye drops that are made from my own blood. They're called autologous serum eye drops.
"Who thought of that?" was my first response. I pictured a bunch of drunk interns at a bar brainstorming about side effects.... Oh what the heck, what's another $180 if it makes my eyes feel better (no surprise that Aetna didn't have a pharmacy code for my blood)? First, I had 18 vials of blood taken, which was tested for a bunch of viruses. Then the specialty pharmacy spun off the red blood cells and added some saline to the fluid that was left to make 15 little bottles of eye drops, which I have to keep frozen and thaw out one at a time. This batch should last me a good 4 months. They really help!
I hear many people predicting a tough year. Tough is relative. It all depends on your spin on life. Confronting challenges I couldn't have imagined over the last two years has left me a little jumpy, it's true. Lately, my blood tests have been coming back with false platelet readings. Three weeks in a row they showed a huge drop, which can only mean very bad things. It turns out my blood clumps in a certain type of tube and messes up the platelet count. My platelets are great and I'm so firmly in remission it's not even funny. But calm I was not, especially the first time it happened. During those moments of panic, I did manage to sort my priorities quickly. All I cared about was keeping my promise to my godson to take him and his mother to dinner in Times Square for his 12th birthday before they went to see Spiderman Turn Off The Dark on Broadway.
My visit to The Dark Side (Spiderman notwithstanding) was thankfully brief, as the true blood counts came back in just a few hours. But still, when faced with a horrible possibility, what could be more important than making a wonderful kid happy on his 12th birthday? Nothing was going to keep me from New York that day. We all had a fantastic time. It was a great night and a great start to the New Year.
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| Niki, Victor and Kathy January 5, 2012 |
Yes, it all depends on your spin. Happy New Year!
Kathy
CANcer = HEALth = CAN HEAL
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