Monday, April 11, 2011

Surprising Follow Up

8 days after I got out of the hospital, I had to go back for a follow up. Sleeping had been incredibly difficult for the last week with me not able to do more than an hour to two at a time. Part of the problem was likely the steroids and medication but I imagine another part was the fact that for the first time I could remember I was having to sleep on my back where I usually slept on the side where my swollen head was (was this the cause of brain cancer?). I had to take a nap everyday and that Friday was the first time I had used an alarm clock in weeks (I don’t usually use an alarm clock in regular life) and was getting up at 6:30 for an 8:00 Am appointment. The night before, I had not been able to fall asleep until almost two am due to the anxiety of the next day.

There I had sat wondering whether it was going to be the 2, 3 or 5 week scenario. They had also told me they would be doing some test work on what they removed. In the best case scenario they hoped for, the cells would come back as 3 to 5% actively cancerous they had stated before. But in the follow, they told me in my case, it was 0%. These Duke doctors, which had been the most optimistic out of all that I had talked to, had hoped they were buying me 10 years. The simple truth was that this surgery was simply supposed to be just an extension of my death sentence but now they stated that they thought it was unlikely that I was going to die of this. I was not going to have to come back for 5 months because that’s about how long before the “hole” in my brain would refill. I’d have to do MRI’s as a monitoring tool forever to check if it came back and do anti-seizure medication twice a day but a minor daily change and a tri-annual check was, in the scheme of things, fairly minor. It would be pointed out that the monitoring starting point after the surgery was where they hoped most patients with my diagnosis were a few years after not immediately. My mother immediately broke into tears and loudly praised God for his miracles. Alex who was taking notes for my wife as to what I needed to be doing and the diagnosis stopped writing because he didn’t expect news anywhere near this good. I called my wife and she very casually stated that was what she expected, I was so low on energy that I didn’t quite catch why this would be so as no doctor had stated they thought this was possible much less likely and she herself had said to a friend that even if this went well, it was going to be tough to live with the concept of an expiration date in mind.

Unfortunately, the medical appointments weren’t over. My eye was looking really red and instead of getting to go home after these appointments at noon as I’d hoped, they set up an appointment for the afternoon to check some things about my vision. After a variety of tests, they determined that my eye was just scratched. One of the tests left me so near/far sighted (not sure which is the correct term) that I could only see things clearly that were like 40 yards away.

Since this was my first time back at Duke since the surgery, we went shopping. I had hoped to be able to find a shot glass, t-shirt or something that said March Madness Duke ’11 but the tournament was still two weeks away even if I was already ending my personal March Madness. Plus, I needed an active way of cheering for them during the tournament. I still bought a few things in addition to some of the ones my mother and brother had gotten me to remind me of this point, some touchstones to never take these opportunities for granted, to help me recall that I’d gotten an incredible opportunity.

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