It seems all too fitting that I am writing this post while us New Englanders are buried under a mountain of snow in the middle of February and that Punxsutawney Phil has predicted we have more of the same to come. He also seems to be telling me I am in for my own personal Groundhog Year from hell. Let me explain.
Last year on this exact day, I was in Houston, Texas with my man and my dad and step-mother. We were all anxiously awaiting my upcoming neurosurgery at MD Anderson. Just a few days earlier, I had been cleared for surgery and not a moment too soon. By this time, I was so exhausted that I was sleeping roughly six solid hours during the day. I had routinely had blood pressure of 180/120. One of my eyes was drooping and I had daily cluster migraines. I had gained over 60 pounds in a matter of months. I was so tired that could barely walk from my couch to my kitchen (and in my tiny South End condo this is a distance of about 20 feet). I had lost about one-third of my vocabulary and could only really participate in a conversation for about 5 minutes before losing my ability to follow along anymore. I had stopped working several months ago and spent my days either sleeping or sitting in a daze on the couch, not even lucid enough to follow a crappy TV show.
But I was really happy. I was a little nervous about surgery, but mainly I was excited to get on to the next phase – recovery and getting back to having a regular life. It was clear, to me at least, that the surgery was a success the moment I opened my eyes. My brain fog was gone! I immediately started sleeping at night, even in the hospital, and I was awake – really and truly awake – during the day. I remember my step-mom kept telling me to close my eyes and rest in the hospital. I couldn’t talk much because moving my face made my head hurt really bad due to the proximity of my face to the surgical site. But I didn’t want to sleep! I didn’t need to sleep. I was so happy just to sit there and watch and hear everything going on around me. All day long. No naps required.
The day after I was discharged from the hospital, we went for a two mile long walk. Two miles! All the way from the hotel to the hospital and back. This kind of feat had been impossible for months. You have no idea how shocking it was to me, my parents and my beloved M to see the transformation. I don’t want to mislead you, the next several months of recovery were really hard and I will talk more about that in later posts. And I had heard so many horrible stories of people waking up (or discovering in the weeks following surgery) only to find out they still had Cushing’s after brain surgery. But the immediate signs of remission were clear and remarkable and I was over the moon with happiness. I was going to get my life back, I really was getting better.
But in the months following surgery, despite the fact that the damage from Cushing’s was slowly disappearing, new problems started to rear their heads. The first sign of trouble was really severe back pain and intermittent stabbing pain in my back between my shoulder blade and my spine. I never had this during Cushing’s and it didn’t “feel” like Cushing’s. I was still sleeping really well at night and was awake more and more during the day. I talked to the Wizard about it and he warned me that sometimes Cushing’s can mask other diseases – Cushing’s causes your body to secrete too much cortisol, which is a natural anti-inflammatory. After surgery, your body has to get used to living on normal amounts of cortisol, so if Cushing’s was “treating” any other illnesses you were definitely going to feel it. And this seemed to make sense in my case. The Wizard ran some lab tests and although my pituitary hormones and cortisol levels were textbook perfect, as we expected, some of my other lab tests were abnormal. My Alkaline Phosphatase had been climbing for months and was about double a normal value. This was a big red flag. And my calcium was all over the place. Never in the “purple horn” zone, but definitely it was at least a yellow flag. A few other tests indicated that I might have abnormally high bone turnover, which could definitely explain my bone pain. But why were these labs abnormal and why was I in pain? What did this all mean?
From here, I just kept getting worse. It only took a few months of denial this time to accept that I was back at the starting line for Marathon 2, not even six months after getting rid of Cushing’s.