Staking A "Now"

It has been a long winter on the physical front and there has been a lot of time for reflection on what that means for me. Hours of face to face conversations with those close to me about my health have been revealing. Conversations—-written or spoken—help me sort out and clarify my own thoughts. Hearing or reading their responses to what I say or don't say (or refuse to say) helps me hone my feelings even more.

Writing them down and hitting "Publish" is the ultimate clarification process.

So here are some of my thoughts, starting with the short summing up of what 2018 has so far held on the medical front. 2018 held surgery to repair a torn peroneal tendon (ankle area). I'm now in a brace and in physical therapy, but it has been a long haul. 2018 held a cancer marker that last month was way out of line with the last several months, so much so that both of my oncologists called for a retest. (It returned to its previous stable level.) And 2018 held a viral infection that began on March 13 and is still lingering in me. (I know when it started because I was at an all-day conference, presenting twice, and knew when I left that I was "getting something." Boy, was that an understatement.)

Here's the reality of where I am. At some point, the problematic marker (the M-spike) is going to rise and stay up. There is still something going on inside me and while that may well be viral-driven (I'm beginning to think I will never shake this virus entirely), at some point it will spill into the cancer realm. I hold close a hard but true real statement from Atul Gawande's beautiful book Being Mortal about people with incurable cancers: "[they] can do remarkably well for a long time...They resume regular life. They don't feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses." This whole episode with the virus tells me there have been breaches and they are probably major ones.

Then there is the aftermath of the viral attack. Well, it is an ongoing aftermath because I am still coping with it. The worst of it has receded. But I still have a resistant sore throat in the evening and significant exhaustion. By early evening, I am "done." I just last week managed to last 24 hours at work for the first time since early February. Early February. (I am hired to work only 24 hours, so don't think I have to reach 30 or 40.) I am not 100% back to how I felt earlier this year, and certainly not to where I was last fall, and I am having to come to grips with the realization that I may never attain that level of well-being again.

All this means I have to redefine what being "well" means for me. I have to redetermine whether I will ever be "that well" (like last fall) again. I am taking more time on everything I do. I have no choice. My body is incapable of doing or giving more for now. Making the mental adjustment as to where I am physically is hard, let alone dealing with "and this may be the best it ever is" thought. I have found that doing small deliberate tasks—writing a letter, peeling and slicing carrots for lunch—when I am feeling lousy physically allows me to center myself and crawl out from under some of the oppressive weight of feeling sick. While doing those deliberate tasks does not make me well, I feel calmer and by extension better by the time I finish.

Going back to Being Mortal (that may be a reread this year), Gawande talks about the "difficult conversation" that doctors and chronically and progressively ill patients need to have. Gawande feels they need to discuss four questions. (1) What is your understanding of what is happening to you (physically, medically)? (2) What are your biggest fears and concerns about what is happening? (3) What goals are most important to you? (4) What trade-offs are you willing or not willing to make (to reach goals set in #3)?

I find the longer I live with cancer, the longer my list of trade-offs I am unwilling to make grows. I also realize the longer I go down the road towards the end, the more choices I make about burning life energy. For example, the Symphony just finished its 39th season with a spectacular concert and we held a post-concert reception late into the night. (And we had friends from out of town staying with us to boot that weekend.) I was up late, running on adrenaline, burning life energy, and was wiped out for the next two days—and I did not regret one bit of it. In August, Warren and I are going west to see Ramona & Company. Do I have that trip in me even with Warren coming along? I don't know. But we will go for lots of reasons, love and family being behind every single one of them. I will pay a price physically for that trip. But I will pay it willingly. Freely. With both hands open.

As I share my thoughts and feelings with those close to me, there have been heartfelt responses. My friends are standing around me, surrounding me with love and support. My dear friend Margo showed up the Monday before the concert (and the out-of-town guests) and helped clean my house thoroughly, as cleaning had totally gone off the radar. As I said on Facebook: A good friend says "what can I do to help?" and means it. A great friend says "what can I do to help?" and means it, then shows up with the Dyson in hand. My dear friend Katrina, who has been in my life for almost 44 years, was sitting at the kitchen table when I called my oncologist to get the results of the M-spike retest. After I finished the happy phone call, I looked over and she had tears in her eyes. We held hands for a moment, grateful for the good news, grateful for the love and friendship between us. And Warren, who is always, always aware of our increasingly limited time together, listens to me with love and thoughtful responses, even when his eyes fill with tears and his voice breaks.

We are all thinking about time.

Annie Dillard in Pilgrim at Tinker Creek (another book I plan on rereading this year) wrote:"This year, I want to stick a net into time and say 'now,' as men plant flags on the ice and snow and say 'here.'" That resonates deeply with me as I contemplate how fast time is slipping through my fingers.  And then, there are these beloved words by Thoreau that I often think back to: "Time is but a stream I go a-fishing in. I drink at it; but while I drink I see the sandy bottom  and detect how shallow it is. Its thin current slides away, but eternity remains. I would drink deeper, fish in the sky, whose bottom is pebbly with stars."

As spring belatedly arrived in Ohio a few weeks ago, it was finally warm enough to venture outside and sit on the deck step. As I sat there, I was acutely aware of time, of its thin current sliding away. This may be my last spring: who is to say? Like Annie Dillard, I want to plant a stake in the flow of life and say "now." I want to plant a flag and say "here." So I sat there and admonished myself not to toss aside that achingly incredible moment: the sound of spring peepers in the air, a robin hopping stiff-legged in the grass, the sun on my face.

Now. Here.