I Stayed Up All Night Writing This

Posted by M. K. Waller

[Forgive me. This post is longer than I intended, but once I got started, I couldn’t stop. I had no idea I’m so enlightened. If you stop reading before the end, I’ll forgive you. But you’ll miss the good part.]

My husband once told me that when I tell stories, I should start with the headline. So here it is.

Before

My CT scan twelve months after completing radiation treatments was clear.

The first time I posted about having cancer, I said I would write about the experience. I am a writer, I said, so I will write, or words to that effect.

The statement dripped with drama. You can practically hear the rolling r‘s: I will wr-r-r-r-r-r-ite.

Such overstatement is normal. We newbie writers are always trying to reassure ourselves. We’re just starting out, we haven’t published much (or anything at all), we don’t make a living from writing* (we may make nothing at all), we ‘re not confident in our abilities, and–let’s face it–much of what we write stinks (and we don’t know it stinks until a member of a critique group tells us).

Established writers encourage us: If you write, you are a writer. Believe it. Say you’re a writer.

We believe it until someone asks what we do. Then we either clam up; shuffle our feet, look at the floor, and mumble, I’m a wmbrl; or declare, too loudly, I’m a WRITER. Then we blush and shuffle our feet. 

After publishing the aforementioned post, I re-read it, then blushed and shuffled my feet. I’m been shuffling ever since.

But moving on:

When I said I would write, I probably had the idea I would learn secrets of the universe and share them in capital letters and red ink.

But I’ve had no mystical experiences. Altogether, it’s been mostly humdrum. But I’ve learned a few things about myself, and about life in general, and I’ll share those:

  • Chemotherapy isn’t the same for everyone. I went around saying the side effects were mild.  When I’d been off the evil drug for a month or two, I realized I had felt pretty rotten. Still, I was lucky. It wasn’t that bad. Surgery wasn’t difficult either. Radiation was nothing: I showed up for twenty consecutive days, let the techs admire my cute socks, and went home. That was it. Lucky.
  • Being complimented on my taste in socks makes me feel good. The radiation techs liked the ninjas and the cats wearing glasses the best. The oncologist asked what the ninjas were; I had to tell him I didn’t know. One of the techs told me. I don’t know why the oncologist was looking at my socks.
  • Phase I

     

  • I have no vanity. Hats and turbans were hot. I tossed them, went around bald, and discovered my head, just like Hercule Poirot’s, is egg-shaped.
  • It’s possible to survive for months on Rice Krispies, as long as you don’t run out of sugar.
  • If you don’t drink enough water, you keel over in the oncologist’s office, where you went just to check that great big lymph node that popped up under your jaw, and end up in the hospital. If your temperature doesn’t go down, the night nurse comes in and jerks your three blankets off, and you spend the night under a thin little sheet, slowly turning into an icicle, but your temperature goes down. (That’s opposite to the way my mother did it, but whatever.) They call in a specialist in communicable diseases who orders tests, and when you ask the nurse what they found, she comes bopping in about midnight and says, “Guess what! You have the common cold.” And she’s so sweet and so cute, you feel bad about nearly (deliberately) knocking her off the bed while she was trying to do that nasal swab.
  • Airports have wheelchairs. Thinking you can get from gate to gate without one is dumb. Don’t try it.
  • Phase II

    Chemo brain is real. At present I am dumb as dirt, and not in the way mentioned above. I picked up a brochure about chemo brain at the clinic and, I am proud to say, was able to read (most of) it with my forty-five-year-old Spanish. Because I knew what it said before I picked it up: It’s real, don’t worry, talk to your family/friends/counselor/minister/doctor/whoever and tell them to get used to it, make a habit of writing-things-down-putting-your-keys-in-the-same-place-when-you’re-not-using-them-everything-you-ought-to-be-doing-now-anyway, and it’ll go away, maybe. I may have missed a couple of points. If I ever want to know what they are, I’ll google.

  • Chemo hair is curly. I knew it would be curlier than before, but it is c u r l y. I’m tempted to get it buzzed off again.
  • TRIGGER WARNING: THE FOLLOWING MATERIAL MAY NOT BE SUITABLE FOR ALL AUDIENCES: When a twelve-year-old flat-chested surgeon you have to see because your surgeon went on vacation–my doctors always go on vacation–insists you must wear a sports bra and says, “We’re going to get you out of that pretty lacy bra,” do not hold back. Tell her that pretty lacy bra is made of cast iron, and that all the bras you’ve ever had since like 1962 have been made of cast iron, and that sports bras might as well be made of spider webs, and she can take a long walk off a short pier. You’ll feel a lot better if you say that. I would have felt a lot better if I had.
  • The kindness of strangers is real. When they see a woman with no hair, they understand what’s going on. Women wearing turbans whisper, “Good luck.” People smile. If you wobble a bit, they run to prop you up and offer to help you get wherever you’re going. I didn’t have to take them up on the offers–my wobbling, like my reaction to chemo, was mild–but I appreciated every one of them. Mr. Rogers’ mother told him when things got scary, to “look for the helpers.” She was right. They’re out there.
  • In addition to boosting your immune system, a smile can lift your spirits. It’s good for your doctors, nurses, and everyone else in the clinic as well. Oncologists don’t have it easy. They need all the support they can get.
  • Phase Now

    According to my radiation oncologist, cancer is now a chronic disease. But in one way it’s the same as it was when I was a child: It’s kept under wraps. The word isn’t whispered as it was then, but it isn’t spoken too loudly. That’s one reason I didn’t cover my head. The topic needs to be brought out into the open. People need to see.

  • On the other hand, a little denial can be a good thing. And it can be balanced with acceptance.
  • I didn’t fall apart when told my prognosis, including the average length of survival. I’d always wondered what I would do under those circumstances, and now I know. That time, at least.

Most important, and over and over, I learned that David is good. Not a good husband, or a good man, but good. I knew it when I married him. Every day, he proves me right.

Finally, I learned something else I already knew: There isn’t enough time. We all know it, but the knowledge carries more weight for some of us than for others.

I think of Andrew Marvell:

Had we but world enough, and time,
This coyness, Lady, were no crime….
   But at my back I always hear
Time’s wingèd chariot hurrying near;
And yonder all before us lie
Deserts of vast eternity.

And of Keats:

When I have fears that I may cease to be 
   Before my pen has gleaned my teeming brain, 
Before high-pilèd books, in charactery, 
   Hold like rich garners the full ripened grain; 
When I behold, upon the night’s starred face, 
   Huge cloudy symbols of a high romance, 
And think that I may never live to trace 
   Their shadows with the magic hand of chance; 
And when I feel, fair creature of an hour, 
   That I shall never look upon thee more, 
Never have relish in the faery power 
   Of unreflecting love—then on the shore 
Of the wide world I stand alone, and think 
Till love and fame to nothingness do sink.

My brain isn’t teeming, and certainly not at the level of a Keats, but I would like to write more than I have. I’d like to do a number of things I won’t have time–would never have had time–to do. Time’s winged chariot is following close. Still, I commit the crime of wasting what I should spend. The post I wrote last month about playing Candy Crush is not fiction. But…

The next CT scan comes in March. Till then, I’ll write what I can, do what I can, and say what Anne Lamott calls little beggy prayers.

The Usual

In other words, I’ll go on with life as usual.

 

 

 

***

“Statue of Angelina Eberly” by Kit O’Connell is licensed under CC BY-SA 3.0. Via Wikipedia.

The Usual photograph is detail from a statue of Angelina Eberly, the “Savior of Austin,” that stands at the corner of 6th Street and Congress Avenue in Austin, Texas. In 1842, following the Texas Revolution, Sam Houston sent Texas Rangers to Austin to remove the government archives to Washington-on-the-Brazos, where the Texas Declaration of Independence was signed (and very near the town of Houston). Houston claimed Austin was too vulnerable to Indian attack for the documents to be safe there.

Angelina and other residents of Austin, the capital of the Republic of Texas, claimed Houston was stealing the records because he wanted to make the city of Houston the capital. Angelina knew Sam Houston didn’t like Austin; he made no secret of his dislike, and while president of the Republic, had lived at her inn instead of at the official residence. The fact that the Rangers came under cover of darkness gave more credence to the her view.

When Angelina heard the Texas Rangers up to no good, she hurried to 6th and Congress and fired off the town cannon. She missed the Rangers but blew the side off the General Land Office building. Noise from the cannon alerted the populace, who came running and scared off the Rangers.

Thanks to Angelina Eberly, Austin remained the capital of the Republic of Texas, and is  capital of the State of Texas to this day.

The statue of Angelina Eberly was sculpted by cartoonist Pat Oliphant. The accompanying plaque attributes Austin’s continued status as Texas’ most premier city to Angelina’s combination of “vigilance and hot temper.”

***

*Stephen King makes a living by writing. Danielle Steel makes a living by writing. Mary Higgins Clark makes a living by writing. Agatha Christie made a whale of a living by writing. Other writers either have a day job or have won the lottery.

***

Literature does have its purpose. If you doubt it, see my post on Telling the Truth, Mainly: “A Mind Unhinged.” It isn’t as long as this one.

John Keats, “When I have fears”

Andrew Marvell, “To His Coy Mistress”

***

I am a writer and I wr-r-r-r-r-r-ite. My short stories appear in Austin Mystery Writers’ crime fiction anthology, Murder on Wheels; in the anthology Day of the Dark: Stories of Eclipse; and in the Fall/Winter 2012/2013 issue of the online magazine Mysterical-E (which I like to think of as the one with the dog on the cover). Another of my stories will appear in Austin Mystery Writers’ second anthology, Lone Star Lawless, coming soon from Wildside Press. I at Telling the Truth, Mainly and at Austin Mystery Writers.

Of J. C. Penney, Robert Redford, and a Return to Civilized Dining

MOW BOOK LAUNCH 003 (3)

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Posted by Kathy Waller

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Writing this post won’t be easy.

ernestandkathy9 (2)
Ernest pinning down left arm

Sixteen pounds of Ernest lies across my right forearm, pinning it to the arm of the recliner. He’s on his side, positioned so he can turn his head and, with a moonstruck expression, gaze upside-down  into my eyes and/or reach across to pat my chest. At present, he’s making biscuits on my upper arm and, head thrown back, pushing with his chin at the mouse, which will soon fall to the floor. It doesn’t matter. With my arm weighed down, my fingers are the only movable part of that appendage, and they’re typing as fast as my brain can make up words. The mouse is purely decorative. I’m surprised to have gotten a whole paragraph down.

Well, no, not really surprised. We do this all the time. I say, “We’ve talked about this. You can’t lie on my arm when I’m using the laptop. So move.” He turns his head, gives me the coy But-I-wuv-you look, and thinks something like, Not on your old lady’s corset cover. I’ll move when I’m good and ready.

He’s good and ready when David brings bacon and eggs, or, rather, bacon and egg. David, bless him, has been providing chair service since I started chemo. I spent six months eating mostly Rice Krispies, because they tasted like what they were; David spent the same six months eating fruit and vegetables and ravioli out of cans, and Pita Pockets out of the freezer. I felt bad about letting him eat such shabby  meals until I realized he likes them. He’s just been polite enough (for twelve years) not to mention he prefers tinned pears to fresh.

Ernest is polite enough to raise himself up off my arm when I jiggle it sufficiently, but then he lies back down. While I eat, he watches and waits for crumbs to fall. If I were eating a biscuit, a muffin–anything that tends to shed–he would be crawling across me, snuffling my shirt. An iota of carbohydrate is enough to justify trawling.

Crumbs don’t fall. After David removes the tray, Ernest removes himself to the back of the recliner, above my head. That’s his new favorite place. Stationed there, he can sleep, pat my head, run his claws through my hair, occasionally kick me with a strong hind leg.

I slept late this morning, caught up in a dream I still can’t shake. I was sitting on a bench outside a new J. C. Penney store, waiting for a train (the tracks ran right by the front door), and Robert Redford, who had performed at the grand opening, was sitting beside me. The actress who had appeared with him sat on my other side. The actress said something to Redford about the skit they’d just performed, and he shot back a deadpan response.

Up to that point, I’d been pretending they weren’t there, as is polite when one finds oneself sitting between celebrities one doesn’t know personally,  but his response was so funny that I clapped my hands over my face and guffawed. The actress said something else, and this time his reply was even funnier than before, and I guffawed even louder.

It was a dream, so whatever happened next made no sense. I did wonder how J. C. Penney managed to talk Robert Redford into opening a store. As to why I dreamed about Penney’s: Yesterday David told me that after a thirty-year hiatus, the company is again selling appliances. I have no idea why I dreamed the store doubled as a depot. I don’t know why I dreamed about Robert Redford, either. But who needs a reason?

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After a brief pause, we return, my laptop and I in the recliner, Ernest on the chair back above my head. I’ve just been through the dry run for my first radiation treatment tomorrow. The most recent PET scan showed cancer in one lymph node, but no evidence of metastasis from it. Lesions are gone from the lungs. At this time, only the positive node will be treated. I was once told to anticipate results from all diagnostic tests would be better than expected. These results were exactly that. Peace of mind is no longer an option, but my expectations remain high.

Infusions continue, but the evil drug, the one officially classified as chemotherapy, was withdrawn nine weeks ago. Until it was stopped, I had no idea how rotten the previous months had been. Still, the side-effects I experienced were relatively mild–the side-effect of a positive attitude, perhaps. I feel better now, stronger, more interested in pushing a cart through the grocery store.

I’m not interested in cooking. Several weeks ago I made half a pot roast–I wore out after preparing the carrots, so David had to deal with the potatoes and onions–that turned out to be simply wretched. Last week I bought a chicken whose disposition is still hypothetical. The doctor told me radiation will probably make me feel very tired. I’ll wait to see what happens before taking back the kitchen.

But at some point, I’ll have to do the right thing. I’ll return to cooking. David and I will return to civilized dining. And deprived of chair service, Ernest will continue cutting off circulation to my fingers, making biscuits on my arm, running his claws through my hair, and kicking me with his strong hind leg–but with no hope at all of crumbs.

DSCN1843 (2)

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Kathy Waller blogs at Telling the Truth, Mainly
and at Austin Mystery Writers.
Her short stories appear in Mysterical-E
and in Austin Mystery Writers’
crime fiction anthology, MOW cover - amazon pix
MURDER ON WHEELS
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She is working on a mystery novel.

D-minus

MOW BOOK LAUNCH 003 (3)

 

 

 

Posted by Kathy Waller
Very long, but sort of necessary

 On January 29, I was diagnosed with Stage IV metastatic breast cancer. Two kinds of cancer are present, not a common occurrence. One kind is aggressive but easier to treat than the other, which is slow-growing. There is a lesion in each lung. One was biopsied, so we know which kind it is. My oncologist said there’s no reason to think the lesion in the other lung is the same kind, but since that lesion wasn’t been biopsied, we don’t know. The radiologist preferred not to biopsy it because it’s near the heart. Sticking needles near the heart isn’t a preferred protocol.

Before I go further, I must say this: Please don’t say you’re sorry. I don’t feel ill. I have no symptoms except one lump I can feel. I’m sorry–really, really sorry, big-time sorry–I’m in this fix, but I already know you’re sorry, too, so it’s okay not to say it. Hearing it can be a bit of a downer. 

I announced the diagnosis to a friend over lunch. We discussed the situation from all sides. Before we parted, she said, “You know this is an opportunity to write.” I said, Yes, I’d already thought of that.

Newbie writers repeatedly ask themselves–and each other–When can I call myself a ***writer*** without feeling like a fraud?

Answer: When no matter where you are, or what you’re doing, or what you’re feeling, you think, I can write about this.

From now on, when people ask what I do, or what I am, I shall say, in a firm and forthright manner, as if they’d better believe it or else, I am a writer.

I responded to the diagnosis with a combination of O God and Okaaaayyyyy…. The oncologist spoke of palliative care and statistics. I despise the word palliative, and the statistics were mind-boggling, and not in a good way. But I told David I’m going to fight, and he said he was, too. I said I was going to be happy while I fought. He said, “That’s what fighting is.” I’ve never heard a better definition.

When a navigator (survivor) from the Breast Cancer Resource Center (BCRC) called to introduce herself, I told her I hadn’t read the stack of literature the surgeon had given me–a looseleaf notebook, a spiral notebook, and a passel of booklets–because after glancing over a couple of pages, I decided I didn’t need that much information. I said I guessed I was in denial. She said a little denial can be a good thing.

I dumped the stack of paper in David’s lap and invited him to read it. He did. He’s a good person. A brick, if I may use an old-fashioned word that sounds funny now but in this case isn’t. He takes copious notes, asks questions, knows what meds and chemo drugs I take, records appointments on his calendar, remembers what other questions we need to ask, and and and…. He can recite most of the info from memory.

I’ve vowed several times to step up and take more responsibility for the fight. To date, I’ve learned which anti-nausea pill to take first and which to take if the first one hasn’t worked. I know chemo #4 is scheduled for April 15, too, plus a few other random facts.

On the not-denial side–and to date–for a few days after a chemo infusion, I feel kind of meh but generally okay. However, I become fatigued easily. But I forget about the fatigue and do too much and then pay for it. The oncologist said, “Yeah, everybody does that.” The first time, I paid with a day in bed. Then, a couple of weeks ago, I stayed up half the night, three nights in a row, trying to write three hundred words for a guest blog, and paid for over-reach by thinking, What if the chemo doesn’t work?

The good old What if?

The thought had already crossed my mind, of course, but this time it was accompanied by the line from It’s Always Something, Gilda Radner’s account of  her experience with ovarian cancer:

I had wanted to wrap this book up in a neat little package. I wanted a perfect ending. Now I’ve learned the hard way that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end.

I’ve not read the book, but a long time ago, I read that sentence, and it stuck.

The BCRC navigator called again to see how I was getting along. We I met for iced tea and conversation, and I unloaded a couple of million words on her and said I would attend a meeting of a group the oncologist had strongly recommended (twice already). I perked up some more. But then came the third visit with oncologist. He ordered a CT scan to check progress, as in, Is the chemo working?–and the possibility of No surfaced again. After a while, No morphed from possibility to probability. Then it began to feel like a prediction. More sighing, combined with an undeclared expectation of the worst.

But I knew that surgical oncologist Dr. Bernie Siegal says cancer patients must tell the truth, that if you go around claiming, I’m fine, just fine, your subconscious, which takes words literally, will believe you, and won’t tell your body it must fight. He recommends using a grading system: When you feel like C-minus, admit it. So I told people who asked, and some who didn’t, that I was a D-minus: scared to death.

Anyway. I had the CT scan yesterday afternoon. The oncologist had stressed that he wanted me to have the results by the second day at the latest–I like him a lot–so if we hadn’t heard by then, to call his office.

Later I realized that when you have a scan on Thursday, the second day is Monday, which leaves a weekend of not knowing in the middle.

But. Here’s where things get better.

The oncologist called Thursday afternoon, not two hours after we left the imaging center. One lung lesion has almost “resolved,” the other has reduced in size by nearly half, one lymph node has reduced significantly. However, a lymph node near where the bronchial tubes branch off from the trachea has enlarged significantly. He said it could be just “reactive,” doing what lymph nodes normally do when you have, say, a cold–but not to count on that. We’ll follow it closely, see what it does, and if it doesn’t shrink, figure out what to do next.

In short, this is a mixed result, but the oncologist is pleased. What pleases him pleases me. So I’m pleased.

Backing up a bit, at our second visit, oncologist asked whether I had more questions. I said, “No.”

He said, “Okay. Well, your next question should be, ‘How will we know the chemo is working?'” I told him I’d assumed he’d get around when he was ready.

Now, Dear Reader, your next question should be, Why did it take you so long to write this post?

For a variety of reasons, I suppose. Because I’ve only now decided how to approach the topic. Because I wanted to hear some good news before writing. Because I wanted some grounding–I like certainty; even relative certainty–before writing.

Because I didn’t want to.

Because writing about any subject makes it real.

Years ago, I put off writing a letter because I’d have had to say in it that my father had died. I still haven’t written that letter. Writing it would have made the death real, and I preferred it stay as it was, hovering on the edge of reality.

Writing about Stage IV cancer would have made every detail, every statistic, real. I wasn’t ready for that.  Now it’s okay. It’s real, not like it was yesterday with No in the ascendant, but real with mixed but pleasing results.

Ending tacked on Tuesday night: That’s the post I wrote last Friday, or most of it. I started working on it during chemo infusion #3 and continued that evening and into the night. Chemo drugs seem to invigorate me. Sunday, however, the crash came. The “flu-like” symptoms the oncologist had been asking about finally hit. That lasted only thirty-six hours or so, and it could have been worse. However, it left me in a nasty mood from which I haven’t emerged.

Last Friday, this was a chirpy post about adventures in breast cancer. Tonight–or, as it will probably post tomorrow, the 30th, a day late–it’s a non-chirpy post written by someone who’s in a nasty, nasty mood. Because I took all the chirpy parts out.

I shouldn’t admit that. Even if it’s evident, I shouldn’t admit it. I should pretend to be chirpy. I really, really should. That’s what nice Southern girls are supposed to do. Chirp.

But I remember the name of the English honor society I joined in college: Sigma Tau Delta. Sincerity. Truth. Design.

And I think of Dr. Siegal: If you’re feeling D-minus, say you’re D-minus.

So what this post lacks in Design, it makes up for in Sincerity and Truth. Tonight, I’m D-minus.

Having said that, however, I think tomorrow I’ll be much improved.

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Oh, all right. As long as I’m already late, I’ll mention one achievement: After watching selected videos on YouTube, I have learned to wrap a scarf into a turban. For one devoid of manual dexterity, that’s big. The first two times we appeared together in public, the turban stayed put, and I received compliments. During Friday’s chemo, filaments of fringe kept popping out. They looked like little bitty antennae.

Obviously, Friday’s edition was poorly engineered from the get-go, because as soon as I got home, one end slipped out and draped down the side of my face. Fringe crawled over in front of my glasses.

I reminded myself of Lord Byron in Albanian dress. Except Byron’s headgear probably isn’t called a turban.

And he’s absolutely gorgeous.

I look like I wrapped a scarf around my head, and shouldn’t have.

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Kathy Waller blogs at Telling the Truth, Mainly and at Austin Mystery Writers.