My Wobbly Bicycle, 50

I could change the name of my blog to Doctors, Ad Seriatim. I’m posting this early because today we're heading downstate, to Ann Arbor, having a pre-op consultation for Jerry’s very-big-deal back surgery on Dec. 3. He’ll be in the hospital for about a week, rehab after that. About six months’ recovery time. Another winter of hunkering down and getting better.

How will this be for us, after last winter? A friend wrote to say how glad she was to see that I feel like relegating cancer to a much lesser position in my posts. The last two, it’s hardly been there. True. I think about it less. Partly, that’s because it’s an integral part of my system, now. You don’t describe how it is brushing your teeth because you do it every day, and unless you find you have a loose tooth, it’s not worth mentioning.

Coming back from chemo and radiation is not unlike returning to the world after, say, a year in a monastery. The world seems fast and energetic. I didn’t realize how small it had grown last winter. I seemed to still DO things—wrote this blog, wrote commentaries for IPR radio, wrote some poems, had a book launch party, spent time with people as often as I could. Nonetheless, my mind was turned in on itself, the way the sick do, gathering its forces to keep on keeping on. 

These days I tire easily. I get overwhelmed even by being in a big store, shelves and shelves of stuff, mental noise.  It’s an interesting quality of tired. Not the old “I’m bushed” kind, the body feeling a bit deliciously tired, worn out from activity. It feels kind of chemical, I’ll call it that for lack of a better description. It feels like a deep inability in the bones to muster the basic elements of aliveness. Maybe it’ll always be this way. My body had a mega-whammy of abuse. Probably I’ll get some better, maybe a lot. Sometimes I’m discouraged, sometimes not.

And I still have pain and weakness in my left hip from some overuse that must have occurred last summer, still trying to improve this with physical therapy.

So now we plunge back into the fray, negotiating the giant U. of Michigan Medical Center and all that implies. Jerry worries how this will be for me. What about him? Last year was difficult for him, too, as you can imagine, and now he’s in for it again, though different.  But it'll all be okay. It'll be okay even when it's not. It's being alive.

 And who can do more than one thing at a time? First this thing, then the next. That’s how it goes. Trouble only feels Huge if I start adding into the mix a bunch of projections and concepts about it. And when I do that, it’s only a problem if I begin blaming myself for doing it!

One-thing-after-the-other is a gift Trouble gives, it looks like. Not as in balancing the scales, not as in “Something good always comes out of it.” There's not a sunny “side” to illness and pain, period. But I see there’s a recalibration, a slowing down, a reconsideration made possible by the slowing down:  What am I, anyway? And—the old question—What am I doing with my one precious life? which maybe ought to be amended to Am I even noticing my one precious life?

I picked out a poem from No Need of Sympathy that seems to be about noticing, both the tangible and the intangible:    

Birdhouse

Remember the year we had bluebirds there?

How they came back the next year, poked their noses

in and changed their minds? After that it was all swallows,

after we knew to clean out the twigs to get the house

ready for renters. Swallows or wrens. Oh, they might

have been wrens, sometimes. They might have been

wrens all along, but I like the word swallow. I think

they were swallows. That tiny slender trilling down

the scale. Wrens sound like their bodies, compact

and insistent. It was good to have either,

and their chicks. Especially their chicks, evident

only by the to-and-fro of the mothers, their fierce

judgments. It was good to have that life greet us

at the corner of the house. Bluebirds, we felt blessed.

They let us know who was in charge: blast, blast, chitter.

Also the color, the royal robes.  But the swallows,

the way they swooped in and out! Who doesn’t love

the word swooped? When they were crossing

to the trees beyond our drive, remember how we’d sit

in our kitchen chairs by the glass doors? It was so

peaceful to watch  that industry, that tiny hope

carrying on, not caring a whit about us.

My Wobbly Bicycle, 42

My last swim was at 7:15 p.m. last Thursday, Sept 19^th, water temp. 68, air 70. It was such a beautiful evening that even though I’d taken a fairly long walk with my uncle that afternoon, I decided to swim. It was supposed to rain on Friday, and I had to pack up and leave, anyway.

It’s easier to leave in bad weather. It did rain. But it’s no fun to go in and out to the car with coolers, blender, food processor, boxes of food, clothes, clothes on hangers, my 10 lb. weights, lawn chairs to repair over the winter, wicker rocking chair to take to the re-weaver, computer, printer—pretty much like a real move.

Too much, maybe—walking, swimming, and packing up, carrying stuff out and then up stairs into our house—I’m having  arthritic-type stiffness and pains in my hips and knees. A new thing for me. Every shift of my body, every pain, I register in a new way—what does it mean? My oncologist told me that most cancer recurrences reveal themselves in symptoms, not in scans and exams.  My first exam after chemo, by the way, was Friday afternoon. All’s well, but I expected as much. It’s too soon, probably, for trouble. It would take a while for a stray cancer cell to begin to do its dirty work.

But I’m not thinking much about this. I’m living my life, as instructed by my oncologist. As far as the hip and knee pain, my guess is my body’s been generally damaged by the abuse of chemo and radiation, and it may be effectively “older” than it was.  And then, I AM older. I had a birthday this summer.

My oncologist says you measure success of treatment in two ways: (1) look in the mirror; and (2) birthdays.

I seem to have matured (not the same as birthdays) during this last year. I feel more settled in my skin, less apologetic (to me) for being myself and not the magically wonderful person I had aspired to be. There’s no time left for illusion. If I’m to live this life, I'd like it to be THIS life, not  one I invent in my head.

And who is this “myself”? That identity transpires moment-by-moment, but on the whole, I see that my dedication to writing has taken on more of a spiritual dimension, or, rather, I guess I'm more clear about that dimension.  I dislike the word spiritual. No one knows what it means. What I mean is that I seem have a new and intimate kinship with my forebears in this practice of writing, and—in a way I can’t fully understand—I'm more sure that this reaching into the inarticulate and trying, daily, to say what can’t exactly be said is noble, soul-saving and soul-wrenching work, not to be apologized for, taken lightly, or distorted by a lust for fame.  

It is as crucial as—and maybe identical to—the nun’s prayer, the priest’s vow.

Your next question, if you know me at all, might be “How does your Buddhist practice fit into this?” I started the practice, as do most people, because I was anxious and going through a difficult stretch. I wanted some peace, meaning at that time, I suppose, escape. It didn’t take long for me to see that the escape route is into, not out of.  I meditate daily because I see for myself that this practice just plain works over the long haul. It appears that the more a person's awake to how things actually are, the more true the life, and the words, can be.

I’m deeply grateful to my Buddhist teachers, past and present, and want to be helpful to them, but the role of lay or ordained  teacher doesn’t seem to be my bent.  When I was a teenager, I thought for a while I wanted to be a minister. What I wanted, it seems—looking at it from this distance—was to be intimate with what’s real. And then somehow speak that intimacy.  Looks as if I’m the same person I’ve always been.  Or, I’m like a snowball, getting fatter with my past clinging to me as I roll downhill.

Roll? A subtle Wobbly Bicycle allusion?

Next week: An interview with myself about my new book of poems!

My Wobbly Bicycle, 31

You may have been with me since the first “My Wobbly Bicycle” post last December, when I first told you about my cancer. I’m thinking of all the ways one might read the arc of these posts: (1) an opportunistic and narcissistic spilling of the guts; (2) a brave and aware facing of a serious illness; (3) evidence of the grace of God and the power of many prayers; (4) my own little self-help-by-writing-program; (5) evidence of the value of meditation; (6) my simply doing what I do, which is writing stuff down. Which of these is “true”? What have I left out?

Here’s what I said that gave me the title, “My Wobbly Bicycle”:

 We pretend there’s some solidity, some predictability. But being alive is more like riding a bicycle, balancing on two thin tires. Eventually we’ll fall one way or the other, but for the moment, we’re upright. It’s exciting, sometimes frightening.

It’s easy to pretend there’s solidity by choosing one of the numbers above, 1-6, and ruling the others out. My way or the highway. Of course we know that quantum mechanics says this isn’t true, but we dearly love a story arc, and the only way we get one is to ignore the others. Honestly, I don’t think we can live without our stories. It’s just that we take them as the Truth. . . . .

Case in point. In last week’s post, I praised Greenblatt’s The Swerve, that traces the beginning of modern thought primarily to the re-discovery of Lucretius’ On the Nature of Things.”  I’d read no reviews or commentary before I reported to you. Woe unto my students if they’d done that. An opinion/belief/point of view is only as trustworthy as the work that’s gone into seeing what ELSE is out there. I need to know what the larger community of historians say about this book.  

There’s a long review of The Swerve by Jim Hinch in the L.A. Times, another in The Guardian, and others that came out when the book was winning so many prizes. From Hinch: “The Swerve did not deserve the awards it received because it is filled with factual inaccuracies and founded upon a view of history not shared by serious scholars of the periods Greenblatt studies.”

He says: “Greenblatt’s vision is not true, not even remotely. As even a general reader can gather from a text as basic as Cambridge University historian George Holmes’ Oxford Illustrated History of Medieval Europe (1988): ‘Western civilization was created in medieval Europe. The forms of thought and action which we take for granted in modern Europe and America, which we have exported to other substantial portions of the globe, and from which indeed we cannot escape, were implanted in the mentalities of our ancestors in the struggles of the medieval centuries.’”

He points out that there was much less self-flagellation and hair-shirt wearing in Medieval monasteries than Greenblatt says, and much more secularism, ribaldry, drinking, etc. He gives many examples.

And the hoards of invaders that supposedly destroyed the culture of Rome? They quickly assimilated and within decades, the areas they invaded became major centers of learning. Again, many examples.

And, he points out,  “many of the supposed religious values scorned by Lucretius — faith, self-sacrifice, an identity shaped not by individual desire but by family and community — remain widespread in western and non-western cultures and are in no way inimical to human freedom and progress.”  

Hinch says it is all a “vastly more complicated, interesting and indeterminate story. . . . Notions such as the Middle Ages and the Renaissance are little better than shorthand for arbitrarily bracketed periods of time in which certain changes in the pattern of human life are interpreted as significant and others are not.”

Oh well, the book tells a good story, with no doubt some truth in it. I learned a lot, in any case.

You can probably think of hundreds of other examples, including of course politics and religion, that lay their own private grid over the ever-flowing river of reality. I just thought of another: the new DSM-5, that re-interprets certain human behavior as mental illness, certain others not. Each edition redraws the lines.

Which brings me back to my cancer, which I’ve barely mentioned so far. Hooray! I’m turning my attention away from this difficult time. Was it “difficult”? Another interpretation. It was what it was, some days I felt bad, some pretty good. If I am fortunate enough to live many years after this, how will I talk about this year? What would be a good story of it?

How am I now? Tired, tired, tired, but feeling better every day. Walking some every day, even if it’s only 15 minutes. My long afternoon naps are getting a bit shorter, it seems. And I got my hearing tested yesterday—happily, the chemo didn’t further damage my already bad ears. (Chemo destroys cilia in the cochlea)

I’m going to keep using the title “My Wobbly Bicycle” until a year has passed since my diagnosis. I want to let you know, under that rubric, how my whole hairless year evolves.

Hairless? Is that the truth? No, I still have a suggestion of eyebrows and little stubbles of eyelashes, the left more so than the right. You should try putting mascara on stubble. It gets all over my eyelids. Looking good has been really complicated this year.

My Wobbly Bicycle, 29

Hooray! My white count was 1.1. I needed 1.0, so I just squeaked by. I had my last chemo yesterday. It took two tries this time to find a decent vein. The first time the needle went in, but some scar tissue probably blocked the chemo’s flow enough to cause pressure and discomfort, so the nurse went to the other arm, the most battered one, and managed to find a good spot. Although today there are little sore nodules all along the vein.

I’ll continue to have blood tests for three weeks, and today I go in for a Neulasta shot to boost my white blood cell production.  I’m in the “chemo phase” now, which means I’m hopped up on steroids, ready to run five miles and lift weights, and will be this crazy for three days. Usually, the great fatigue and malaise begins a day or so after that. But saying “usually” makes no sense, since each time has been different.

This being the end of treatment, there was some hugging when I left. And my oncologist spent some time with me, talking about the future. You may remember his dire prediction if the cancer came back. He didn’t mention that again, and frankly, I know one person who had a recurrence that seems to be successfully treated a second time. Oh well, who knows?

What he said to me, paraphrased by me:

1. Walk out of here and forget about me, forget about this place entirely. Do not spend your life worrying.  You’ll no doubt start to get anxious before each checkup, but until then, eat ice cream, get on your paddle board, forget all this.

2. Okay, you say you’ll have a cloud over your head, but each year that goes by, the cloud will be higher up and lighter. One day you’ll hardly even see it.  (Lovely of him to say this.)

3. You can exercise as much as you want. Go ahead and get tired if you want. Just rest when you need to. If you can only walk a mile and you want to walk two, do it in increments.  (Okay, Jerry, you can get off my back now about “doing too much.”)

4. It seems that women who have a spiritual practice, a religion, do better with all this. If you do have something, you may find a much-renewed interest in that.  (Little does he know, I’ve had a passionate proclivity all my life. I’ve studied Christian theology, been a church elder— the first woman and youngest—an active Episcopalian, and now, as things have evolved, a Buddhist practitioner and sangha facilitator. ”Renewed” goes on every day, not just in times of crises.)

Speaking of every day, today is beautiful as only northern Michigan can be. Summer is short, so every perfectly warm and sunny day strikes like a gong in the mind. It’s hard not to be aware, when we know how a day like this will pass, shortly, and for that matter, how short life is. But we’d shoot ourselves—or in Jerry’s and my case, pack our bags for South Carolina—if we loved only summer. It’s the sharp turn of seasons, the swimming and kayaking,  gradually or not so gradually, giving way to high-piled snow, a glittery rolling landscape, sharp edges blunted, bright even on dull days.

I love to walk around our neighborhood, especially in summer, when the flowers are out. I love the cracked sidewalks and each different house, all old, some beautifully restored, some ramshackle.  I cannot leave them alone. I remodel each one, I offer (mental) suggestions to the owner about how to improve the façade, what paint colors would work better. This isn’t very Buddhist of me, my desire to alter things, but I don’t care. I just watch my mind do that and watch its delight in doing it. I spend so much time with the small details of my poems (and prose), editing with as much precision as I can, so naturally, I’d say, this tendency spills over to other aesthetics. What line-break, what verb, what paint color, what flowers, will improve the aesthetics of this situation?

I’ll report next week on how this last chemo phase is like or different from the others.  I’ll also talk a bit about what I’m working on. Oh yes, the galleys for my new poetry collection, No Need of Sympathy, from BOA Editions, are ready. If you know of some place or someone who would like to review it, I can have a copy sent posthaste, or as haste as the USPS is capable of.

My Wobbly Bicycle, 25

Sunday was glorious. Jerry and I drove to Empire and walked on the Lake Michigan beach, looking over at Sleeping Bear Dunes, and then we drove to Glen Arbor a few miles away and walked that beach, then ate lunch at an outside table. Lake Michigan is about as head-clearing as they come—blue, clear, seemingly limitless as the ocean.

Nothing but transitions: Tuesday—yesterday—was my second-to-last chemo, a week late. My platelet score was still one point too low, but the decision was to go ahead, but lower the dose of carboplatin a bit. There’s no guarantee that I’ll be able to have the next chemo in 3 weeks. It might be 4 again. But we can hope. It’s better to have them as close together as possible.

Another struggle with the IV. My thin, slippery, and tired veins eluded the first three efforts. The expert was called in again and after a lot of careful tracing up and down my arm, tapping and thinking, she inserted the needle once into the right place. But it was a tender vein and I needed a warm pack on it. Total drip time is about 4 ½ hours. Photo shows my sad arm.

So, I asked my oncologist. What happens when I’m finished? What do you look for and how often do you check? He said I’ll have a scan at 6 months, another at a year, and one a year after that. “But frankly, he says, “it doesn’t matter. We hit you hard with this treatment because, considering your level of cancer,  if it comes back, it will take your life.”

Oh.

We talk about statistics while my mind is still reeling. “I told you not to pay any attention to statistics,” he says. “You’re not a statistic.”

Okay, here’s what I haven’t said before: the 5-year (typical marker) survival rate for this cancer is 35-65% (I’ve also been told by the radiation oncologist that it’s probably as high as 85% these days). But the numbers aren’t clustered around 50%. There’s a huge standard deviation, so these rates are made up of survivors widely scattered along the continuum, many of those people obese, with diabetes and other health problems.  

Back to the oncologist: “You’re thin, you have good health habits. I told you before you shouldn’t have this cancer. I have good expectations (Did he use those exact words? I wish I could remember) for you to be in that upper group.”

I’m always scared when he walks into the room. Time to face the music. He’s blunt. He gives me the unvarnished truth, and then backs up and tries to varnish it a little. But this is the way he is—a surgeon and researcher. But I’m also grateful. There’s a peculiar relaxation in knowing that this is it. There’s no ambiguity. If it comes back, there may be ways to retard its growth for a while, but that’s all.

I don’t think it will come back. That’s the truth. That’s what my mind and body tell me.

But: Transition again: Mad Men’s opening sequence has a silhouette of a man falling, with a tall corporate building in the background. He doesn’t begin from anywhere; he doesn’t end anywhere. He’s just falling. Entirely unmoored. This, it seems to me, is what life is when we see it clearly. Nothing to hang onto. Everything changing constantly.

We love what we love. We want it—and ourselves—to last. But what is it we want to last? A collection of thoughts about who we are.  Even they change. But beyond the changing—and this is where my years on a cushion pay off—is a vastness made up of that changing but itself deeply comforting when we’re able to see through (not reject) the changing. Why even try to talk about this? Words play out. But it seems useful to at least let the words point toward it.  Poetry is best at this. When a poem causes us to suck in our breath and have nothing to say, it’s pointing. When there’s no way to say what it’s pointing toward, it’s pointing.

My Wobbly Bicycle, 24

Yesterday we were eating breakfast, getting ready to leave for my next chemo, when the oncologist’s office called to say they’d just gotten Monday’s blood test results, and my counts were too low. I have to postpone for at least a week. I can’t tell you how disappointed I/we were. I had the magical date, June 4, when I’d be finished, and now it’s June 11, barring other delays.

Maybe the fact that we ate out Saturday night and I got what was probably food poisoning and spent the night with vomiting and diarrhea lowered my counts. Or maybe because my counts were low, I had less tolerance for food bacteria. Who knows? I’m trying to cheer myself up by noting that I have another week of feeling well before the next round.

This is such a long haul. Six months. If I’d chosen a clinical trial, I’d be about done now: one arm of the trial was 6 chemos, no radiation. The other was 5 weeks of daily radiation with 4 chemos. The idea was to find out if radiation is necessary at all. (Since that study began, evidence has been mounting that, yes indeed, radiation improves the odds.)

My oncologist is on the Board of that huge national study. However, he put no pressure on me, and I chose his standard treatment, instead—3 chemos, 5 weeks’ daily radiation followed by 3 weekly internal radiation, then 3 more chemos. The full blast. Stage C3-2 metastasized cancer’s nothing to gamble with.  

A friend who relies a great deal on alternative medicine asked me why I went, seemingly unquestioningly, with what I was told, rather than investigate other therapies. I look at it this way. If I’d just been told I have blockages in three out of four of my heart arteries and the fourth didn’t look so good, either, I wouldn’t start a diet and exercise routine to cure it. Too late for that. Move fast, hit hard. If I’d known years ago I was on the verge of cancer, I would’ve tried every food and exercise routine that seemed plausible. Also, if I’d been told I was hopeless, I’d go for the best alternative plan I could find.

As it is, I’m seeing a chiropractor whose treatments are statistically unproven. He says it’ll boost the immune system, I feel better, breathe more deeply, and it can’t hurt. When I started mediating over 25 years ago, the practice was suspicious to the mainstream. Now that we can watch brainwaves in action, doctors as well as popular magazines recommend it.

Maybe if I had a lesser cancer. But no, I think I’d follow my oncologist’s advice even then. I agree that the drug companies influence treatment. They support studies that are likely biased in their direction. On the other hand, if some non-corporate lone wolf came up with an alternative treatment that worked over and over (not once, not twice, but statistically significantly), I’m convinced there’d be droves of scientists and doctors dying to make a name for themselves by running the studies, with control groups, and writing the articles. Even the drug companies would find a way to make money from it.

I’m not willing to rely on anecdotal evidence. Cancers are as different as people. Sometimes people heal spontaneously. That does happen. I’ve no doubt some foods have cured some people. And that healing rituals have cured some people. Who knows what mysterious things go on in the body? I’m deeply grateful for the many prayers offered for my recovery. I feel buoyed and supported, healed in some way, by them. I’m drinking lots of green tea, eating well, and getting as much exercise as I can. When the treatments are over, I’ll keep that up.

When the treatments are over. . . . now that I’m nearing the end—oh well, less near than I thought—the fear rises in me a bit more. As long as I’m having chemo, something’s being done. That feels a bit secure. Then what? Will all the cancer be dead? Will the same conditions that caused it cause it again? No one knows. But frankly, no one knows anything much. We’re the product of so many causes and conditions we can’t begin to know them all. It seems all we can do is rely on what seems most reliable.

I do what I can. I stay as responsive as I can to the shifting needs of the moment. I trust the help of those who seem trustworthy. This is my life, right now. The sun’s shining and it’s finally warming up again. Our tulips are blooming. I’m going to take a walk.

My Wobbly Bicycle, 2

I’m gathering information, deciding between joining a clinical trial group or not (decided not), getting a CAT scan, looking online at wigs and caps, preparing for my 3-4 month blast of chemo and radiation, the vicious murder of all fast-growing cells in my body. In battle-mode, people say. She’s “fought” her cancer. After a long “battle” with cancer, he succumbed. I’m interested in the language. How fiercely we want to survive. Of course we do. I do. The cancer is in my lymph nodes. Not what we'd wanted to hear.I love it that my friends want to pull their light-swords and fight the universe for me. I am in complete sympathy with Thomas Hardy’s wish for a vengeful God to shake a fist at, rather than the “purblind Doomsters” who “had as readily strown / Blisses about my pilgrimage as pain.”I think, though, of the effect of battle-language. As we now know, nothing gets thrown “away.” There is no “away” to throw things to. No enemy gets “destroyed.” There’s always an opposite force mounting itself in response. What gets pushed away springs back like a rubber-band. So, what language for this cancer I have? This is what I’ve come up with:You can pave over the grass, but if there’s the tiniest crack anywhere, a pale little blade will soon emerge. Life is determined to live. Life, of course, is not just the growing and developing part. The sprig that emerges is going to die when it’s finished with the other, as part of the wholeness of things. It could be that I’m finished with the other. It feels as if I’m not. There’s a great deal of life going on in me. I have a lot of work I want to do. Quoting the sage, Elvis, “a lotta, lotta livin’ to do.”  My stand-up paddleboard is waiting for me next summer. My children and grandchildren are waiting for all of us to be together at the lake again.So, as I head into chemo, my intention is to stay curious, to look for the route life is taking at the moment. Since, I’m not separate from anything, this amounts to the route life is taking in everything, in every direction. Where is it now? It’s in this keyboard, in the poem I want to get back to, in my  awareness of dearest husband downstairs answering emails, in the tick of my clock, in the warmth of my green tea. A LOT of green tea! Have you seen the statistics on how much good it does?“Route”? Another maybe misleading word. Everywhere is the route, but as each second opens itself, there’s the next coming on, and life works itself out: trunk, branches, leaves.I don’t know how to say any of this. The truth always eludes me, as soon as I think I’ve found a clever phrase to pin it down. I don’t know why I bother. But it does seem that humans keep bothering.The bothering often seems more successful in poetry than in prose. Poems know how to point toward rather than to try to articulate the truth. Poems are written—the good ones—by people who stumble in the dark, feeling their way. I’m stumbling, or as I put it last week, riding a wobbly bicycle.But I’m okay with wobbliness. Wobbliness focuses one amazingly, to stay upright. I’m sure the bicycle wants to stay upright, since it is so much fun to ride. I’m going to go with that.