Updated: Oct 8
Okay. I confess. Last Thursday it was 56 degrees Fahrenheit (that’s about 13 degrees Celsius) in downtown Walla Walla and I pulled the Harley out from under the cover, uncoupled the battery tender, fired it up, and rolled it outside. I’d been watching the weather forecast all week, like I do, and Thursday turned out to be some kind of weird Walla Walla anomaly. I rode north on 2nd to Main Street and just tooled around for a while. It was heavenly. Reminded me again of what it’s like to be really alive.
On Sunday we took Nanette up to Bluewood and hit the slopes, again. My sixth time up this season. I told the transplant team my goal was to be skiing by January and I’m pretty sure I heard some thinly veiled scoffing. But dreaming about riding and skiing got me out of bed on days when I didn’t want to get up. It got me walking when all I wanted to do was sit and sleep. I just walked around the block at first. Then a mile. Then two. Then four and then I slept for about two days because I’d over-done it, but I was set on skiing and watching the snow forecast in November, long before there was any snow in the mountains to speak of.
When we showed up in Seattle on the 17th of December, the medical team couldn’t argue with my progress and Dr. Bensinger shrugged when I asked if I could ski. “Why not?” he said. We took Kurt and Emi and Nanette up on the 23rd.
But you probably know all this. I’m just reiterating what’s already been covered. And Katie wrote about the time we’ve been gifted, and the molecular level of remission we’ve achieved.
That’s not really what this post is about.
It’s about life now that we’ve survived 2018.
My biggest fear wasn’t for myself, and it wasn’t fear, really. It was sadness. After all the years we’d spent struggling with the boundaries of our friendship, having to deny ourselves, so much of what a normal couple enjoy, we’d finally come to a place of peace and joy and togetherness. And then I had to consider, for most of a year, what it might be like for Katie, the love of my life, to lose all that. To be alone. I knew she’d be fine because she’s strong and independent and resilient—more than anyone I’ve ever known—but still, we had so little time together.
So, everyone on the medical team said I’d ‘breeze through’ the process, and here I am, a year later, in complete, molecular remission. Best outcome we could have hoped for. Still, if that is ‘breezing through’, I hate to think what it’s like for those who struggle. I had to completely let go of everything. Everything. That day they infused the chemo into my bloodstream that completely destroyed every cell of bone marrow, I let the old me die. I had to. Stephen, our transplant coordinator, called it ‘scorched earth’, my bones. Nothing left. And so, in a sense, I was dead. We went out to dinner that night because it was Katie’s birthday. And the next day we just waited. Then, on Friday, they re-infused my stem cells back into my blood stream and then we waited some more, all through October, for those cells to graft into my bones and start producing plasma again. I don’t remember much of October. Katie reminds me of events sometimes. Visits from friends. Meals thrown up. Embarrassing accidents. Really, I’m glad I don’t remember it. I was practically dead, after all.
And so, now. What this is all about. A new lease on life. I have been granted the extraordinary gift of more time. And I want to make it mean something. It took almost a million dollars to save my life, and the ongoing treatment for the rest of my life runs over $10,000 a month. Yep. Ten. Thousand. Dollars. A. MONTH. For the rest of my life. (I keep thinking there is an actuary somewhere in the insurance bureaucracy grumbling loudly about this.)
How can I express my gratitude? How can I express how I feel about the friends and acquaintances I lost to cancer and other diseases in 2018? How do I comfort those who have been left behind by loved ones who were not as horribly lucky as I have been? And what do I tell those who still suffer and struggle?
I don’t know.
I keep thinking of that scene near the end of Saving Private Ryan, where Captain Miller, with his dying breath, says to James Ryan, after so many men sacrificed their lives for him, “James, earn this…Earn it.”
I feel I’ve been given this crazy gift and this giant responsibility. I know that by the grace of God, I don’t deserve these extra years. I didn’t earn them. They are a gift. An outright, unconditional gift. And yet, I still ask myself, “What will I do with these days for which we have all fought and paid for so dearly?”
I can not waste them.
Yes, Rest and Recover is still the main thing on my daily To Do list, and will be for a while, I think. Advise from the medical team and other survivors indicate that I won’t feel myself again for at least a year. I, of course, laugh at that. I want to ride to Sturgis this August. A thousand miles on an 800 pound motorcycle in the heat of summer. Maybe I am crazy, but we have to do these things while we are alive. Following our crazy dreams is part of being alive. It is life.
This is, by the by, not the first time I have been granted an extension of life. In June of 1994 I was involved in a single-car crash that should have ended my life. When the firefighters and paramedics pried me out of the car, they were surprised to find me alive. That is a story for another day, but it was an awakening for me—a turning point in my life, and I have done good works since then. It was a promise I made to the Universe, not a trade, but a commitment to use my time more wisely. Not that I look back and can’t see times I was unwise (see how I convoluted that sentence on purpose?). But, as I told Katie last year when we got the diagnosis, I can die now and feel that I’ve lived a good life. I’ve done more good than harm, I hope. For the mistakes I made and the time I wasted when I was younger, I think I have made amends. I think I have added to the scales of justice to the side of good, offsetting as much pain and suffering in the world as I possibly can.
But here now, again, I find myself at this turning point, this awakening. Once again I open my eyes to the cool light of recovery, and I find myself saying, “Thank you,” and asking, “Now. What more can I add to the stream of life?”
I have novels I want to write. I will strive to be a better teacher. I will work all the more as an advocate for education reform. I will do my best to provide for Katie and her children and my children. All of that is clear. And I will, with all the courage I can muster, follow the path the Universe unfolds for me, for I really do believe that there is a reason I have been granted this amazing gift of time and life.
Once a long time ago, exasperated with my life, I told my mom that I thought God was testing me, and she smiled, that sad, quirky, half-smile of hers, and said, “Oh, honey. God doesn’t need to test you.”
I still laugh at myself for thinking that. I get it now.
This is not a test. It never has been. It’s the real thing. It’s Life.