I was supposed to meet the van at 3:45 a.m., coming back from my teaching residency. I heard a knock, thought it might be something upstairs above me, checked the peep-hole and saw nothing, went back to bed. A few minutes later, a fierce pounding on the door. This time I opened it. There was Kent, my colleague, frantic. “Fleda, the van is here! You were supposed to be downstairs 15 minutes ago!” Watch me throw on my clothes. Watch me sweep my things into my bag. Watch me stumble to the van, wild hair, no makeup, belt in my hand.
I’d mis-set my clock.
Chemo-brain, I guess. Stuff like that is more likely for me these days. And I often can’t remember the simplest, more familiar, names of people and things.
But while I was at residency (the Rainer Writing Workshop at Pacific Lutheran University in Tacoma, WA.), we had a guest, a poet and editor of a well-known journal, who also happens to be a radiation oncologist. [Side note: I mentioned this to my chiropractor, who said, “Oh, poetry must be a good way for him to let off some tension from his job.” Sigh. Poetry as nice, innocent stress-reliever.]
Back to the story. This poet/editor/physician was talking about the origin and effects of Taxol, one of the chemo drugs I was given. Taxol was developed from the yew tree. Before someone figured out how to make it from the cells of the needles, it took the bark of a whole tree to make enough drug for one patient. The huge benefit of Taxol and Carboplatin (I had both), both from the same source, is that they work better and have fewer side effects than the old drugs. They aren’t as potent, but they hang onto the cells longer. Hence, as he told me later, in his experience, one side-effect, fatigue, is likely to persist for a long while. Sometimes two years.
You can imagine how good this made me feel. Why is it that he knows this and told me this and all my oncology nurse said to me about my fatigue is “Get used to it. This is your new normal”? Maybe she thought so. But still.
I was nervous about going to Tacoma to teach for ten whole days. Could I hold up? The director did what he could to help me, spaced out my work load leaving time for a nap every day. I paced myself. Sometimes got tired, but then so did everyone else.
I have to say–other than the wearing off of the 7-Keto DHEA I’d tried that made me depressed–the ten days of residency did more for my spirit than anything has, since the end of chemo. Ten days with my dear wonderful, fiercely-good writing friends. Laughing. Good lord, every day something hilarious. And all the rest. My teaching gears were so glad to be engaged—they cranked up, rattled away the rust, and took off.
I also saw, while I was there, how I’m changed. I think it’s harder to see that, close to home. There’s a separation, hard to explain, a sense of the quick passing of things, of everyone’s quick passing. Not in a gloomy way, but in a way that makes me love us, all of us, tenderly. A tenderness. That’s what I think I want to say. A happiness that’s not concerned with the quick passing of things.
Best thing anyone said to me while I was there: my former student Katy saw me for the first time and impulsively said, just before hugging me, “Oh, THANK you for living!”
So, that’s the gist of it. I’m living. I’ve been living all along, but it seems as if my cells are perking up, little by little, shedding their trauma as best they can. I’m getting some writing done. Going back to poems I wrote last year, combing their hair, applying some lipstick, getting them ready to travel out of here.
My Wobbly Bicycle, 75
I had no idea that an all-clear signal from my oncologist would rattle my innards so profoundly. It doesn’t mean much—he said so. But for me, it set off a series of adjustments as if I had just crawled out from under the rubble of a bombed-out building. I’d been down there a long time in the dark—dirt, sand, creaking timbers—injured, starving and thirsty. I’d nearly died. Now what? Can I ever go back to who I was? Who I thought I was? What now?
No joke. That big a shift. Take the metaphor of my hair. Take my hair. It’s too curly for me. Well, of course I’m grateful to have it. It sprang back from the brutal treatment with great vivacity, all thick and, well, curly. However, I always wanted sleek hair. It was fairly straight, with some wavy body, before the chemo. When I was young, my grandmother used to periodically coerce me into marching up the block to her old ladies’ beauty salon to have them give me a permanent. I had had curly hair as a toddler; I think she was looking for Shirley Temple redux. But I’d come home and stand in front of the mirror, crying, wetting it and pulling on it to straighten it. Little old lady hair.
And of course now it’s gray. It’s a lovely gray with a lot of steely dark in it. But it felt so NOT ME. So I had my beautician add more of the steely dark. Then it looked just all gray. Worse than before. Ah, I need brown, to add warmth to my complexion! So I had it colored light brown. No, that looked boringly dull. So then I said make it dark, the way it used to be. We picked a shade that was a tiny bit lighter than the one I’d used before I lost my hair.
And that was the biggest surprise to me. I hated it. It seemed totally unnatural. It was so awful that I texted my beautician and said, “I HATE my hair! Help!” She texted back to say “I’ll fix it.” So bless her dear heart, free of charge, she put in a bunch of light streaks that eased my pain considerably.
And it’s slowly fading, of course. I’ve decided to gradually let it get back to its natural gray.
All this is not about hair, natch. It’s about how I see myself. The transition from my wig, which amazingly looked like my old hair, to curly gray hair was too much for me. But gradually I’m seeing who this is, now, in the mirror. It’s going to take me some time.
And then who is the person who has to have long naps, Wally stretched across her stomach? Who’s losing her lithe young body? Who can’t get her stomach flat no matter how smart she eats?
Some days I’m just plain depressed. Honestly, it feels like PTSD. I was brave. Now what got pushed aside by the bravery wants to be seen.
Don’t misunderstand me. Some days I’m fine.
And then the writing. I don’t know. I write poems and some of them are good. I write prose and some of it is good. But the fire, where’s the fire? Some of it came from the need to succeed. Sure. Some from my previous publish-or-perish life. Sure. Some. Someone asked me recently why I’m not content to rest on my laurels. “That’s not the way it works,” I said.
I’m not happy when I’m not writing—I’m miserable, actually—but for the past couple of years I’ve had to force myself to get things ready to send out. I have a pile of unsent poems. I’m a bit floundering. I can’t figure out how to relate to my life. I’m a bloodhound who hasn’t picked up the scent.
You could say I’m waiting to pick it up, to figure this out. Or, you could say that all that previous “figuring out” was not the point. There’s nothing to figure out. I lean toward the latter. What comes next will come next.
One: I will not sneer at Facebook any more. There are at this point 252 “likes” since I reported that my one-year scan had come back clean. I read all the comments.
Uncharacteristically for me, I went through the entire list of “likes,” slowly, picturing the people I know, or barely know, and imagining the ones I didn’t. They checked “like.” How do they know of me? Or do they randomly check “like” on anything that seems remotely pleasing? Not important. Important is the heightened awareness the “likes” give me of the community, our community of humans who wish each other well, who’ve wished me well.
Whoops, there’s another, as I write. 253. And comments: one says: “Grinning.” I’m grinning at all this. It’s not nothing. It’s not trivial, all these “likes.” To say I’m grateful, ….yes, I could and do say that. But that’s not it. There’s a sense of all this, this mixture of people, ill and well, friends or acquaintances, all of us mixed up together, not separate.
Two: Although I know I am, and will always be, in danger of a recurrence, as of yesterday I seem to have passed over into a different realm, one where I’m at least certifiably well. Still annoyingly fatigued, but nonetheless “back” in the everyday world where one is not tethered to the thought of illness moment by moment. Where illness may occur but does not swamp all other manifestations.
So now I’m “normal.” Not the special one who gets cards, flowers, visits, emails. Feet flat on the gritty ground. A bit of adjustment. As Freud says, the goal is to achieve normal unhappiness. [And happiness, of course, but that’s not his point.]
Three: Artificial divisions. On one level, all divisions (happiness/unhappiness, sick/well) are artificial. Things are a steady flow and even that isn’t accurate. There’s movement only as it’s seen from a fixed point. Otherwise it’s what? Not stillness, but not not stillness.
My gynecologist says I will not have another scan, because current studies indicate they do more harm in adding radiation to the body than they do good in identifying a problem. They aren’t very helpful for certain kinds of cancer, endometrial being one. So basically I stay alert for any symptoms.
I once was sick, but now I’m well. Really?…… When I was sick, most of my body was well. Only one part was sick, even though dealing with that made me sick all over. Or, rather, my whole body was sick enough to allow the endometrial cells to go crazy. How shall we look at this?
Nonetheless, there’s the marker of the oncologist appointment. His pronouncement. I feel in some sense well. Well, I always did feel well. Even when I wasn’t, I scarcely believed it. If there had been a boil on my skin, a gaping wound…..THAT would have been an objective correlative.
Four: For a long time now, a friend has been sending me homemade postcards with utterly appropriate, brilliantly chosen quotations on them. They’ve made me smile and have helped me through some hard times. Here is her latest, a quotation from the essayist and novelist Wilfrid Sheed:
The spiritual life becomes very simple when you’re sick. You pray to get better, and if and when you do, you don’t need to be told to be grateful about it. It gushes out of you. And you discover, in the same giddy rush, that just being alive, even on a no-frills basis, is astoundingly good.
So my primal proofs for God, or whatever, begin with this: the sheer capacity for happiness and one’s sense, when it happens, that this is correct and normal and not some freak of nature. When health returns, it feels like coming home, with everything just as you left it; and the other thing, the bad news—the broken leg or even the mental breakdown—feels like the freak. But now you are back where you belong, in harmony with the universe.
And from this I deduce with some conviction that the universe is essentially a good place to be, despite appearances, and that if it means anything at all, it means well.
Bookcases are up and we’re sorting, trying to come up with a better arrangement than “yours, mine, and ours.” I’m tired. I’m a little worried about how tired I am. Moving is stressful, but this seems like a preternatural weariness, accompanied by weepiness. Depression? I don’t think so. I would be dashing around, feeling quite happy, if I had the energy. My consulting physician just ran some tests and I’ll see her tomorrow, so maybe that will shed a bit of light.
Do I want this blog to be a report on my health? Not really. But it’s all a tangle, my writing life, emotional life, physical life, and my thoughts and reactions. Words for aspects of the same thing.
I have my one-year CT scan and X-ray June 3. On June 12, I see the oncologist to hear the results. Of course this fatigue concerns me. Of course I’ll spend the rest of my life with the cancer-cloud just off in the horizon. Will the wind dissipate it? Or will it crackle up a thunderstorm? I think what it was like NOT to have that cloud, what it was like to believe on some level that I’d live forever. This situation feels more real, for better or worse. Feet on the ground. That was an illusion. Floating.
Yesterday my aunt Jan died in Colorado. Also, yesterday evening my 96-year-old father had a spell of forgetting where he was. There’s other illness and disability in my close family. Old friends are having heart attacks and dying of cancer. This is the age, right?
We’ve just moved into this glorious space. I can see forever out the window. Right now sun is pouring in. We have two great restaurants three floors below, plus a gallery and other shops. We have walking trails. Good neighbors. We don’t have to shovel snow or take care of the exterior—the progress of age for those of us lucky enough to afford it. Yet I feel deep sadness. Not sure why. Simple exhaustion (emotional/physical) ? Maybe. Giving up our lovely little house? I don’t think so. Selling a lot of our belongings? I kept the things crucial to me.
I’ll keep you posted on this. I’ll bet you’re already thinking, well, sure, it’s [fill in the blank]. Easy to over-analyze. All I know is that it’s what I feel. Plus joy. All mixed up.
I got so far from poems I wondered if I’d be able to write again. I’ve been reading them, as a way to re-enter that territory where one sees into rather than looks at. Where one looks at and feels the texture, the shape, rather than the surface shine. Where one runs out of words but puts them down anyway in a kind of holy despair. Holy in the William James sense—transient, ineffable, noetic, and passive.
I start a poem. Penney’s calls to say the blinds we ordered are not available right now. That’s three phone calls, to decide what to do. Then Jerry hopes I can at least suggest which books to get to next in the shelving process. Ah well, things will settle down. Or not. Nothing to do but be here, in the muddle.
Meanwhile, I’m into hair evolution #4. Gray, darker gray, light brown, dark brown. The authentic gray was pretty, but I felt washed out. This dark—which is close to where it was before I lost my hair—now feels artificial. I think I think I’m on the trail of what I’ll like best, somewhere between the two browns.
Some places reach into your gut and take hold. Others not. I’m thinking a lot about place, of course, since we’re almost finished packing and—after a trip to Missouri for my father’s 96th birthday—on May 1 we’ll be moving to our condo here in Traverse City. I’ve lived in Columbia and Cape Girardeau, Missouri; Middlebury, Vermont; and Akron, Ohio–each for a short time. Then Fayetteville, Arkansas for over 22 years and Newark, Delware for 27 years.
Until we retired in 2007, I’d never lived in Michigan. Yet it’s always been my home. Isn’t that interesting, how we adopt some places and not others? You’d think I would have adopted Delaware, being their poet laureate and all. Raising my children for half their lives there. It’s a lovely state in so many ways, but I never properly sank into its soil.
I learned to walk close to the shore of our lake just north of here. Northern Michigan has been my spiritual home. You know that if you’ve been following me at all. I could say a lot more—and I do have a lot to write about. And furthermore, unwritten poems are screaming at me like starving children—but we have to fill these moving boxes.
Instead, I want to give you a link to a short (7 min.) film my grandson Zach made last summer at the lake—although he just finished editing it. Zach’s studying music at Franklin & Marshall College in Lancaster, PA. Besides being an amazing musician—jazz is his thing—he composes music and makes films. Here’s the link:http://vimeo.com/92003064
The film says everything about place that I could possibly say.
What is this “getting over” cancer treatment? Or “getting over” anything, for that matter? We may go to therapy, we may meditate or “forgive” or whatever our practice calls for, but we don’t shed the past like an old skin.
I went for my six-month post-treatment follow-up with my oncologist’s nurse practitioner. (They’re putting off a scan until closer to my one-year mark, in June.) I told her I feel a fair amount of fatigue, that I need a nap—often for an hour—every afternoon, and she said, “Well, that’s your new normal.”
According to Anne Katz, in her book, After You Ring the Bell. . .10 Challenges for the Cancer Survivor, one study found that 33% of cancer survivors report that they’ve had fatigue for a total of about two weeks in any one month, more than five years after treatment. So about half the time, people who’ve had chemo and/or radiation feel tired. As Katz says, the tiredness is not helped by rest or sleep and is “greater in magnitude and persists longer than would be expected with fatigue for any other reason, such as exercise.”
Well, duh, you half-poison anything with chemicals—your body, the earth—and it shows the effects for a long, long time. Rippling effects. More vulnerability to other diseases, to more cancer, to osteoporosis, to more fatigue.
But Katz has a whole chapter on exercise with the clear message that the more you can do, the less you’ll be tired. Well, duh again. I know that, but when you’ve felt bad for a long time, you develop a different attitude, that maybe you need to “take care” of yourself, get plenty of sleep. Rest. People say that to you because they can’t think of anything else that might be helpful, and they want to help. You begin to believe it.
The farther I get from treatment, the more I see that I won’t ever be the same. I’ve been severely damaged. This is good to see, to know, because instead of thinking any day now this will be better, I can begin to adjust. If I’d had a leg amputated, I’d finally say, “Okay, this is the way it is. Now let’s see how much I can do with what I have.”
So, what can I do? The winter’s has been so very long and cold. It was below zero again this morning. My exercise routine has been way truncated. I’ve been walking—either at the Commons, where we’ll be moving—or at the mall with Jerry for about a mile every day. Not good enough, I know, but about right for Jerry after his back surgery. I need to pick up the pace. What I really need is warm weather, and my bike, but in the meantime, I vow to give up other things to get more exercise.
Here’s the deal: I can’t get to my desk until about 9 or 9:30 in the morning, after my (important) stretching routine, my meditation time, and breakfast. None of those am I willing to abandon. Then I write and answer email until noon. Then afternoon we have errands, appointments, and I need a nap. I squeeze whatever exercise I do into that time. (I’m no good doing any writing in late afternoon or evening. Not any more. In the old days, I’d grade papers at night, but that was the old days.) Something needs to change.
I’ve spent a lot of hours in my life at a desk. Or sitting in a chair reading. But if you want to have energy, you have to use it. I can’t believe the ridiculous simplicity of this. I can’t believe I’m even having to talk about this. I, who have always loved to walk, swim, bike. The difference is, now it’s serious. Do it or else.
That message, “Get used to it. This is the new normal,” was good for me. I am not about to give in to this tiredness until I’ve proven there’s no help for it. Hear me and Helen Reddy roar.
I’ll report later on whatever changes I make. Hold me to it. If I don’t say something in two weeks, write to let me know.
It is sobering, that one doesn’t just return to “normal.” There’s such a desire to be the same person, full of optimism and energy. Yet there’s that bass note, as I’ve called it before, that deep knowledge of one’s mortality. And there are the physical reverberations that go on and on.
I could now say what a good thing it is to grow wiser, etc. And all that’s true! How strong the inclination is to balance the scales—one good thing for one bad thing! I prefer to look as squarely as I can into the lion’s mouth, count the teeth, and say “So? My head’s in the lion’s mouth. Let’s see, I may have time to write another book before he snaps his jaws. I may get to see my youngest grandchild graduate from college. He may grow tired and back off. Why waste my time trying to analyze the situation?”
P.S. You should be able to comment now without getting hung up with an improperly working captcha. It’s okay now. You need to type the numeral, not the word. It’s necessary to keep this, because the site was getting hacked without it.