"The Disease Has Exploded." It was the headline you never wanted to see. For nearly two years, I have started my day by checking in on Leroy Sievers to see how he is doing. His "My Cancer" blog on npr.com has become a family of sorts for people living with cancer, for people taking care of family and friends with cancer, and for anyone who has been touched by the disease or who hasn't.
For two years, since Leroy started writing about the unexpected and awful recurrence of his colon cancer, his blog family has followed the ups and downs of spinal surgery and chemo and radiation therapy, for which pain meds work but cause more problems than they solve. On days when Leroy has been too sick to blog, his partner, Laurie, takes a turn, or his old friend and colleague Ted Koppel keeps us up to date on his progress.
It's been going on for so long that you start to take it for granted, or at least I did, that Leroy will be there, will be back, will be holding this family together.
On June 9, he wrote the headline none of us wanted to see. I knew he was going for scans on June 6 — that was "Scan Day, Yet Again." I always get nervous when Leroy has a scan on Friday and the rest of us have to wait through the weekend to see how it goes.
It had been five or six months of dealing with issues relating to his spine, of surgery, of getting in and out of the chair and getting back to walking. Weird how you get used to that. When my friend Judy had lung cancer, we went through a long stretch where we dealt with her blood clots and her leg and the amputation of her leg.
It felt like such a triumph that summer when she would leave me and her leg on the beach and go for a long swim that I almost forgot about the cancer. Until it came roaring back. Like Leroy's.
"I have three new tumors in my brain," he wrote that day. "The cancer has fractured part of my pelvic bone, which would explain the pain I've felt for so long. New tumors in my liver, which had been clear up until now. Lungs, ribs, shoulder blade."
What can be done? Not much. Get your affairs in order. Deal with the pain. Eat cupcakes and cookies with the people you love. That's what Leroy's been writing about lately. I spent a lot of time doing that with Judy.
Cancer is a sneaky bastard. Just when you think you've found a way to live with it, made your peace with it, adjusted to the new normal — awful though it might be — it comes roaring back. It's not a fight, at least not a fair one. If it were a fair fight, Leroy would have won it, and so would my friend Judy, who swam with such gusto in the waters of Cape Cod, while I shivered on the beach waiting to wade in and give her "the leg" when she finished. But it doesn't work that way. It's not about how hard you fight, how tough you are, how much you love life or give to others.
It is what it is.
Maybe Leroy can keep the cancer at bay. You hear those stories all the time, about people with tumors everywhere who manage to survive, defy the odds and the doctors and all of that. As my sister taught me many years ago when she was fighting cancer for the first time, the numbers don't really matter; they're about other people, not about you. I keep thinking that as I wake up each day to see how Leroy is.
Whatever happens, though, I am grateful for the gift he has given, the gift he keeps giving us every day — for teaching me to worry less about the small things that come up, to be grateful for what I so easily take for granted, for teaching us not how to die, but how to live.
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