One consequence of the continuous chemotherapy regimen is sleeplessness. It's not extreme, and it can be managed with drugs that (probably) don't have terrible long-term consequences, notably Benadryl. But at certain points of the cycle, I can get almost exactly 4 hours of good sleep--and then I am awake, as if I'd just had a double Americano and a slap in the face.
Possibly because of previous experience with the above-named therapies, I am not distressed to find myself in this position at 3 or 4 AM. Sometimes I welcome the quiet and have thoughts that are useful and constructive. Sometimes I reflect on a dream (inevitably weird). Sometimes I can't be totally sure what I've got.
So--I have been introduced to the concept of mindfulness on many occasions, and it has always seemed like the right approach to pretty much everything in life. Especially to driving a car, though that is rarely mentioned. It also has, at various times, seemed just like some cultural buzzword worthy of derision by the broletariat. In any case, mindfulness is not always achieved (I suppose) even by its most enlightened practitioners, and is less often, rarely, achieved by those of us who practice whatever it is we practice.
One recent night, my eyes open in the dark, I thought about several specific moments when I should have been mindful but was not. The consequences of having not been mindful, the possibility that life might have been altered positively had I been so, etc.
Remindfulness! OK, maybe this has been done. I think psych therapists have spent some decades here. But maybe I could do a TED talk? Otherwise, watch out--there could be a whole lot blog posts on this theme. Sorry.
Thursday, June 13, 2019
Thursday, June 6, 2019
Love Poems
The late 1970s was in some ways the ideal time to go to college. No one cared about anything (sex, drugs, and rock ‘n roll excepted). There was no war to oppose. There was no war to be called up for. The economy was a mess, but I remember few discussions of what people would be doing when they graduated, with the exception of premeds and the few aiming for Wall Street.
At some point, I found the pond to be too stagnant for my taste. I ran a two-line ad in the college paper that said something like “Tired of apathy? Join Bedrock!” and gave some contact information about a meeting. I think we got 8 people to that first meeting, only 3 were of which were my roommates. The agenda was to get people on campus talking about the global environment, cultural conflicts, energy and feminism.
The name Bedrock came from a poem by Gary Snyder. It’s a love poem, and I’m going to say I knew that, but I have it on better authority than that. I managed to arrange a visit to Kenyon by Snyder some months after founding Bedrock. He was giving a reading at Oberlin and all we had to do was get him a ride from Oberlin to Kenyon on the appointed date. I had a car and a friend, and we snapped to it. I think that was the only longish car trip my ‘73 Audi Fox ever made without breaking down, and I remain slightly, grudgingly grateful for that.
Gary Snyder was the first “famous” person I’d ever met. He’d featured (as Japhy Ryder) in Jack Kerouac’s The Dharma Bums, he’d won a Pulitzer for his poetry, and he was cool beyond belief. He had a hip flask of bourbon—he preferred Rebel Yell, but was settling for J.W. Dant while in Ohio—and he shared with us. Could be the first moment when I though bourbon was worthy of my attention. Oh well.
He asked me about the name Bedrock, noting that it was a love poem. Lamely, I explained that I was trying to establish some kind of foundation for even getting started to get people involved in thinking about what was going to happen next in the world and whether we could do anything to make it better.
He said: “Why the Hell are you guys so diffident?”
We were all that, but maybe that was the difference between 1978 Ohio and 1978 California, and the difference between him and us. And maybe this sounds even more lame, but I am proud of several moments in Bedrock’s history, notably when we had a great panel discussion (40 years ago!) of the conservative case for carbon taxes.
So, love poems. The Kenyon Review had just been revived during those years. I asked Philip Church, poetry editor of the Review, if I could do an independent study with him, and to my surprise he agreed. I had a set of poems I’d written, wrote some more, and met with him weekly in his office. He was generous in his criticism (probably this was not a good sign, although I didn’t get it back then), and we had great, wide-ranging conversations about music, evolution, and even poetry (Loren Eiseley was a touchstone for both of us).
One week I brought him a poem called “Scotch Symphony.” It was a memory of an event from late Spring of my Junior year, when a friend soon to graduate took me to a lake where great blue herons nested. The language in the poem was abstract enough to get Dr. Church intrigued. When I told him it was basically a love poem he was deflated. It did feature whiskey and birds as well, but I guess the love was problematic. To say the least, but that was not in the poem.
I’ve buried the lede again. Love is what it’s all about, people! As I’ve confronted my own mortality (sure I’ve been granted a reprieve, but all we’re--any of us--going to get is a reprieve of one kind or another), I’ve done a fair amount of reflecting on what all the noise and confusion of my life has amounted to: I’ve made some contributions to science, passed some genes on to the next generation, had a few transcendent moments in some sport or other, viewed some spectacular scenery, and so forth. The real experience of life, though, has been to love. The other emotions leave a mark, of course, but when I am lying in a bed and drawing my last, I am hoping to remember the love I’ve felt for all the others: family, friends, colleagues. Romantic love is its own thing, of course—I can’t compare Liz to anyone—whatever shape my brain is in by the end, I know right now that our love is flying out into the universe at 186,000 miles per second and can never be erased. I didn’t even write her a love poem until we’d been married 17 years, but I think there is other evidence out there.
The same goes for my children, both of them. If you truly love your partner, the love you feel for the spawn of that relationship is every bit as intense, if differently conceived. I don’t know how it is if you have less positive feelings for your partner. Might not make that much difference, but I’ve only experienced it the one way, and I am beyond grateful for that.
It’s certainly true that hateful people are frequently remembered long after they die. Who cares about them? We care because we don’t want to follow their example. We may or not be remembered—I would like to be remembered—but it will make no difference to we who are deceased. Better, I think, to feel love in your last moments. I’m going to try.
At some point, I found the pond to be too stagnant for my taste. I ran a two-line ad in the college paper that said something like “Tired of apathy? Join Bedrock!” and gave some contact information about a meeting. I think we got 8 people to that first meeting, only 3 were of which were my roommates. The agenda was to get people on campus talking about the global environment, cultural conflicts, energy and feminism.
The name Bedrock came from a poem by Gary Snyder. It’s a love poem, and I’m going to say I knew that, but I have it on better authority than that. I managed to arrange a visit to Kenyon by Snyder some months after founding Bedrock. He was giving a reading at Oberlin and all we had to do was get him a ride from Oberlin to Kenyon on the appointed date. I had a car and a friend, and we snapped to it. I think that was the only longish car trip my ‘73 Audi Fox ever made without breaking down, and I remain slightly, grudgingly grateful for that.
Gary Snyder was the first “famous” person I’d ever met. He’d featured (as Japhy Ryder) in Jack Kerouac’s The Dharma Bums, he’d won a Pulitzer for his poetry, and he was cool beyond belief. He had a hip flask of bourbon—he preferred Rebel Yell, but was settling for J.W. Dant while in Ohio—and he shared with us. Could be the first moment when I though bourbon was worthy of my attention. Oh well.
He asked me about the name Bedrock, noting that it was a love poem. Lamely, I explained that I was trying to establish some kind of foundation for even getting started to get people involved in thinking about what was going to happen next in the world and whether we could do anything to make it better.
He said: “Why the Hell are you guys so diffident?”
We were all that, but maybe that was the difference between 1978 Ohio and 1978 California, and the difference between him and us. And maybe this sounds even more lame, but I am proud of several moments in Bedrock’s history, notably when we had a great panel discussion (40 years ago!) of the conservative case for carbon taxes.
So, love poems. The Kenyon Review had just been revived during those years. I asked Philip Church, poetry editor of the Review, if I could do an independent study with him, and to my surprise he agreed. I had a set of poems I’d written, wrote some more, and met with him weekly in his office. He was generous in his criticism (probably this was not a good sign, although I didn’t get it back then), and we had great, wide-ranging conversations about music, evolution, and even poetry (Loren Eiseley was a touchstone for both of us).
One week I brought him a poem called “Scotch Symphony.” It was a memory of an event from late Spring of my Junior year, when a friend soon to graduate took me to a lake where great blue herons nested. The language in the poem was abstract enough to get Dr. Church intrigued. When I told him it was basically a love poem he was deflated. It did feature whiskey and birds as well, but I guess the love was problematic. To say the least, but that was not in the poem.
I’ve buried the lede again. Love is what it’s all about, people! As I’ve confronted my own mortality (sure I’ve been granted a reprieve, but all we’re--any of us--going to get is a reprieve of one kind or another), I’ve done a fair amount of reflecting on what all the noise and confusion of my life has amounted to: I’ve made some contributions to science, passed some genes on to the next generation, had a few transcendent moments in some sport or other, viewed some spectacular scenery, and so forth. The real experience of life, though, has been to love. The other emotions leave a mark, of course, but when I am lying in a bed and drawing my last, I am hoping to remember the love I’ve felt for all the others: family, friends, colleagues. Romantic love is its own thing, of course—I can’t compare Liz to anyone—whatever shape my brain is in by the end, I know right now that our love is flying out into the universe at 186,000 miles per second and can never be erased. I didn’t even write her a love poem until we’d been married 17 years, but I think there is other evidence out there.
The same goes for my children, both of them. If you truly love your partner, the love you feel for the spawn of that relationship is every bit as intense, if differently conceived. I don’t know how it is if you have less positive feelings for your partner. Might not make that much difference, but I’ve only experienced it the one way, and I am beyond grateful for that.
It’s certainly true that hateful people are frequently remembered long after they die. Who cares about them? We care because we don’t want to follow their example. We may or not be remembered—I would like to be remembered—but it will make no difference to we who are deceased. Better, I think, to feel love in your last moments. I’m going to try.
Sunday, June 2, 2019
CR
I made a quick trip to Mayo just before Memorial Day, a routine follow-up with blood and urine samples and a C/T scan to make sure my bones were still holding together. The original plan was to drive up to Rochester, with the dog in tow, and continue from there out West as far as Salt Lake City for a wedding and some long-overdue visits with friends. After a quick overnight test trip of ~200 miles, though, we decided that we couldn't do the dog-and-drive thing for two weeks straight without driving ourselves crazy, so we decided we'd better board the dog and fly. We're going to practice traveling with Sunny, and hope to get her as far as Wisconsin, at least, this Summer.
The visit to Mayo was happily uneventful, and confirmed the fact that I am still essentially disease-free at this point. My hematologist (third author on this paper) noted that I now meet the criteria for "complete response," and we figured that I've been there for about a year now. The kappa and lambda numbers keep edging close to one another, and both are in the normal range. The other lab values look fine across the board (platelets a little low, but not alarmingly so). Even my hard-pressed red blood cells have rallied to boost my hemoglobin up into the normal range. My bones are holding together, too--nothing new going on there.Lots of patients would have treatment stopped at this point, but it's not something we're contemplating now. The "high risk" 17p deletion argues against stopping, as does the fact that I'm tolerating all the drugs pretty well. The only change is that I'll start getting Zometa (that's what's keeping my bones together) every 6 months instead of every 3 months. It seems to be making my teeth a little bit brittle.
The wedding, visits, etc. were great. We're not in the habit of enumerating friends, so it was kind of a surprise to me just how effortlessly we filled up every available minute of the week with great friends, while still sadly failing to see many others. We'll have to come back again soon.
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