Missing Normal

Here is the cold truth. Not sugar-coated. Not downplayed like I normally do. Not wrapped in optimism. Mike feels awful. Absolutely awful. This is the worst he has felt since this ordeal started. He feels worse than he did during chemo or after his surgeries. He is just not himself, even though he tries really hard to be. He is also tired. Tired of always feeling sick. Tired of having to lay around all the time. Tired of being betrayed by his own body. Tired of not knowing what the future holds. Tired of all the drugs, all the tests and all the procedures. Quite frankly, so am I.

Mike was actually starting to feel a lot better over the last two weeks, but then came along the Gamma Knife procedure. Gamma Knife is usually a somewhat painless procedure that does not have many side effects. For most patients, that is. For Mike, it has been a whole different story.

The procedure itself was not that bad. They started off by screwing—yes, literally screwing—a metal frame into Mike’s skull. Believe me, it looked as painful as it sounds. When I walked in and saw the screws drilled into Mike’s head, I nearly passed out. Thanks to the Gamma Knife nurse, we have a lovely picture to memorialize the event. In the interest of sharing, Mike gave me permission to post the picture here.

After he got the metal frame drilled into his head, Mike underwent an MRI, which has twice the resolution of normal MRI machines. The MRI identified two lesions on the brain. One we knew about, and one we didn’t. Both lesions were treated with Gamma Knife. The whole process lasted about five hours, and since we got to the hospital before 6 a.m., we were home and Mike was sleep by 11:30.

The day after Gamma Knife, Mike’s pain started. Headaches accompanied by bouts of nausea, weakness and confusion. Mike could not eat or drink, which no doubt exacerbated the whole situation. Since we were not told that this sort of pain was possible, and my best friend, the internet, did not have any answers, we were in a state of panic. Lucky for us, it was the holiday weekend, and getting hold of a doctor was as impossible as the Phillies winning the World Series under Charlie Manuel. So Mike spent the weekend in bed, and I spent the weekend hysterical.

Thankfully, without me even asking, my mom and aunt dropped their weekend travel plans and came over a bunch of times to keep me company, bring groceries and cook lots of food and clean since I had no energy for such activities, and most of all, give me much needed hugs and love. I would have been dead without them (Thank You!)

On Tuesday, we finally got to talk to the doctors and learned that a small percentage of patients do actually experience a lot of pain after Gamma Knife. Would have been nice if they told us this sooner! Plus, apparently, the delayed side effects of the brain radiation are now kicking in too, which is making matters worse. Anyway, the docs increased Mike’s steroids, and he is starting to feel better.

I don’t want to complain or rant about how hard this is. It is obvious. I doubt that I even have the words to accurately express how it feels. It has all really sunk in--our life is forever changed. It will never be the same. Never. I miss the days when life was effortless. When we could do anything and everything we wanted on a whim. When Mike felt good for more than ten minutes at a time. When we laughed all the time. When life was normal. Those days now seem so out of reach. We long for those days. We dream, pray and wish for those days. And almost every night, for just a brief moment, we let ourselves get lost in the slim possibility that those days will be back. That life will once again be normal.