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.

Ray of Sunshine

For what seems like an eternity, we have had a dark cloud over our heads with no light in sight. Last week, however, a ray of sunshine finally peeked through.

We waited four anxiety-filled days and sleepless nights to get the results of Mike’s brain and spine MRI. And I am happy to report that all in all, the results are pretty good. Of course, you have to put "good" in context of what we are up against. The spine is stable. There are no new tumors/lesions on Mike’s brain, and all the ones on his brain lining are shrinking! They are not gone, but we are not greedy, and we will take "shrinking" any day. Only one tumor, which is the largest one of the bunch and is on the brain itself, decided to be stubborn and slightly grew. So we are going after the little bastard--HARD!

Within the next two weeks, Mike will have a procedure called Gamma Knife RadioSurgery. For the avid readers of this blog—all three of you—you might remember that we were really hoping for Gamma Knife when Mike was first diagnosed with brain tumors/lesions. But at that time, we were told Mike was not a candidate. Well now it seems that he is able to have Gamma Knife to the one large tumor.

Here is your medical lecture for the week: Gamma Knife, which ironically does not involve a knife or even an incision, is a machine that delivers powerful mega doses of radiation to a specific target in the brain. Think of it as shooting a gun at a target. It is powerful, precise, and our best shot at getting rid of this bastard tumor. Gamma Knife is about 90 percent effective. Since Mike and I are big gamblers and calculate everything in terms of winning odds, we figure that Gamma Knife has double the odds of winning a blackjack hand. So we are absolutely betting the house on this one!

In a life measured in short intervals marked by Cat Scans and MRIs, and filled with doctors’ appointments, lots of medications, IVs, and different treatments in between, each piece of good news, no matter how small, is a huge victory. Although we are waiting and hoping for a really sunny day, for now, we will bask in the ray of sunshine that we have been given.

Thank you to everyone who called, emailed, and above all, prayed for us. Words cannot express our appreciation. We are so lucky to have your love.