It has been almost a year since I posted here, and that is because that year has been relatively quiet and calm, and it was almost easy to forget for a time that my brother was still fighting for his life. He had returned to work, been cleared to ride his motorcycle again, and though looking at him, you could see the effects of the chemo, he was alive and working and doing things he loved. I don't think the year has been easy for him, but it was a year without a major medical event, and for that I know we have all been pretty grateful.
I saw him in December, at my parents' house in Tennessee. He and his wife and two sons along with my sister and her husband and their granddaughter all gathered at Mom and Dad's for one day, a few days after Christmas. We all sat around and ate pizza and talked and tried to keep the smallest children from killing each other. I had a copy of the QSMASB calendar all wrapped up in a box for Jon with the first installment of the money raised inside, and when he opened it, he said, "Oh, I was hoping that was what it was," and he didn't mean the check. It was the first time he and many of my family members had seen the calendar, and there were many declarations from the male members of the family that they would be doffing their shirts and posing for next year.
At one point, Jon took me and my sister aside and told us that he wanted us to come up with ideas for places where we could go for a siblings-only trip in the next year. We had talked about this when he first got sick, and it was time to follow through. We agreed to each have a couple ideas ready by April first (and this led to a long and hilarious digression about what we would potentially do to punk each other with fake suggestions on April Fools Day).
I looked at him a lot that day. In my mind's eye, he will always be that 28-year-old just returned home from the Navy, his black hair and moustache not yet touched with grey, his big hands pounding out a beat on the steering wheel of the white pickup truck he drove. The truck had a tape deck and he used to take me to school sometimes, and we'd listen to the B-52s and ZZ Top and X. I can still hear him hollering along with Fred Schneider, "Quiche! Quiche Lorraine!"
He wears a do-rag most of the time now, and his moustache and beard are now pure white. That day in Tennessee, I noticed he still hadn't taken off his coat even after being there 20 or 30 minutes, and like an idiot I said something flippant like, "You gonna take of your coat and stay awhile?" And as soon as I said it I realized, he's cold. The chemo makes him cold and he probably wears a coat or has a blanket around him all the time. It was one of those moments when you realize, no matter how normal things seem, this is still a man with cancer, undergoing treatment that, while prolonging his life, may also be killing him.
Because that's the thing you have to keep reminding yourself when someone is keeping an incurable tumor at bay: the drugs that keep the tumor from growing are toxic, not just to the cancer but also to the person.
Three weeks ago, Jon had a stroke, something he has been at risk for because of the chemo he takes for his brain tumor. While not a major stroke, it limited use of one side of his body enough that he was hospitalized for two weeks to have intensive speech, occupational, and physical therapies. I spoke to him in the hospital on the third or fourth day he was there and he was as upbeat and positive as I have ever heard him. We talked about our trip and he mentioned a small Virginia town that was almost exactly halfway between Annapolis and Nashville, and I said that, you know, Gatlinburg isn't that much farther away, and he responded, "Well, hell, Vegas is halfway between here and somewhere - let's go there!" And we cackled and giggled about the Smith siblings in Vegas and other inanities.
He was released last weekend. Yesterday evening I got a call from my sister. Jon is back in the hospital, apparently from another stroke, this one worse. He was unable to move or get himself out of bed and his wife called an ambulance and took him to the ER. At that point, no tests had been done yet, so we are all still waiting to hear. But I am scared. My sister and I were talking when he had the first stroke about how, after such a long run with no tumor growth and no major complications from the chemo, that we had a sinking feeling that now the dam has burst. That with that first stroke, some threshold had been crossed and now the struggle would be to contain and manage the damage that 2 years of chemo have done.
So today I will wait by my phone, as will everyone in my family. I'll try to work, but my heart won't be in it. But I will put on some B-52s when I get in the car and beat my hands on the steering wheel while I shout.