A Cancer Word Caravan

Some years back, perhaps during relapse three, my doctor said I had "indolent" tumors. "That can't be a medical term," I murmured. It could. My tumors stayed lazy eighteen months, then suddenly, sadly, began to reproduce with ambition. Too bad for me.

So let's look today at cancer words. Perhaps those chemists who called the Prednisone-Etoposide-Procarbazine-Cyclophosphamide cocktail "PEP-C," had a good laugh, imagining patients would think cola ran through their I.V.'s. And I always hoped the CHOP regimen (Cyclophosphamide, Hydroxydaunorubicin, Oncovin (R) and Prednisone) would slice my tumors as with cleavers or axes. Chop chop! The name DICE (Dexamethasone, Ifosfamide,Ciplastin and Etoposide) highlights the Las Vegas angle of all cancer treatments. As in "Dicey" or in "No dice." And ICE (Ifosfamide, Carboplatin and Etoposide) besides being an Italian dessert and iceberg ingredient, is also gangster slang for murder. The hope is that the chemo switchblades the disease.

The root of "bedridden" literally comes from words for "bed rider"--more fun than I ever had on a hospital matress--and is located between "bedrock" (as in my "lowest point") and "bedraggled" (as in "made wet and limp as if by rain') in the dictionary. A fair description of me during my sixteen months of chemo. And there's the offensive term "invalid." As if ills make anyone invalid.

A "patient" "bears pains or trials calmly or without complaint." I've tried, but I am often impatient. (Though I read an article once that stated obnoxious patients live longer, so maybe I have the right idea.) At Midwestern Regional Medical Center, they always preferred "cancer fighter" to the more passive "patient." And one was never a cancer "victim." I like these distinctions, though sometimes I just feel like putting down my dukes. But being raised on John Wayne movies I always put them back up again.

I have to admit, I am tired of all this. I am not bearing this relapse calmly and without complaint. John Wayne was a big six-foot something, hard-living and, in movies, quick with his fists. I remember seeing clips of him at that last Academy Award's show before he died--all thin and sickly looking. This is, this can be a wasting disease. As in "something that gradually destroys or diminishes you."

There are "partial remissions" (an oxymoron if I ever saw one.) And my doctor would be remiss, if he said I was in remission right now.

But I am ready to go back into battle, at least I am tonight, at Arian's coffee shop. Look at me, with my shoulder pads and helmet and jersey on. I am part of the NHL--the National Hockey League. Oops, that's my hockey playing husband's dream. (Forty-five and he can keep up with the twenty-year-olds.) No, I am part of the Non-Hodgkin's Lymphoma League. But still, I've got my hockey stick out, and, if I don't have to actually skate, I could do some damage with it. Chop chop!

Best, Jumblie Girl

Variations of My Room in the Bone Marrow Unit: Scissors

Below is a poem reprinted from my book, "The Woman with a Cubed Head," (Kalamazoo, MI: New Issues Press, 1998. ISBN: 093-282-6660.)

"Variations on My Room in the Bone Marrow Unit:
In the Room of Scissors"

By Julie Moulds

Scissors, every pair I ever used, hanging from penny nails
on walls, hanging like silver chromosomes
on colored yarn from the ceiling; blades built into the floor

like that iron bed of proverbs. The scissors are bright
preschool plastic; tiny toenail; jagged pinking shears
I loved from mother's sewing box; left-handed scissors

that never worked in elementary. They are the barber's shears
used to cut my hair that didn't fall, the second time
my hair let go. The barber stays with me in my room

though he sits as far away as he can. I walk over, offer
him my last remnants of curls, say, "I've never gone
to a barber before." He answers, "It's not like going to the moon"

and speaks nothing more to me, even after clipping
off my little mowhawk and my final stubborn pair of tufts.
He gets his money and my hair never grows back.

My head is lunar and I start to wear his spare green barber coat
but he still won't talk, so I change to blue hospital robes, walk
through the shop, avoiding the floor blades. The clippers buzz

and roar, beckoning customers to come. The music makes
the scissors leap from their nails and dance on the long
shop counter, kicking up sharp chromed legs.

The barber, a businessman, charges his clients double
to watch, his patients a line of bruise-eyed women
and men, their mouths sewn shut with catgut.

They enter with fuzz on their heads and leave smooth as stones.
Everyone exits, but I can't, and stare through the glass
at the door locked from the outside; stare at the clock

saying when the barber will return. The scissors and I
are alone. I hate the barber, but anything chrome
behaves when he is here. Now they are scissors

with an agenda: I am disease, a Gulliver-sized pogrom
a ritual purification to make happen. Not being threaded
needles, can they cut out the bad and not leave me

to bleed? lymph nodes, ovaries, lungs? The scissors
walk towards me like little John Waynes, and I focus
on the clock, play with its red plastic hands.

Even the hands are scissors.

Tracy--Poem

Here is a poem I (Julie Moulds) wrote about Tracy in the last entry. It appears in my book, "The Woman with a Cubed Head," (Kalamazoo: New Issues Poetry and Prose, 1998. ISBN: 093-282-6660.)

Bone Marrow Unit: Tracy

I knew a man who left his wife after nine years of chemo--
left her to die, her lungs filling like someone underwater.
In my mind, she is drowning still and forever;
gasping and making bad jokes, like the last time we talked.
"She was funny," I tell my husband, "feisty-funny
with a little acid laced in." "Tracy," I imagine
that other husband stating, "I want children, and a wife
who isn't rotting, and yes, I've picked her already."
And that, I know, approaches the truth.
Whatever he said, he said it long distance,
over the phone, out east from Maine or Maryland.
He tells her he's left while she's Intensive Care,
a hygienic room in a bone marrow unit in Illinois.
A week later,that woman--with whom I'd laughed and walked,
other months and this, before
they siphoned the bone marrow from my blood--
a week later that woman was dead. I was asleep or drugged
and connected to six machines, but Tracy
was up that night, screaming in the tide. My husband,
wandering the halls in his yellow scrubs, paper hat,
and blue boots had to hear, until morning, more death
than he wanted to, with me three doors away.
She was my age, thirty-two, and still
honeymooning in Florida when her cancer came.
"We used to like to play tennis," she said.
Her husband had gall to fly in that last morning.
Had gall to make that final appearance. I tell myself
not to judge: only God can do that. Tracy had been
though more chemotherapy than anyone I ever knew--
and maybe this was the only way God could get her to die.

Tracy--Bone Marrow Unit Entry

I want, on this blog, to access journals from my various treatments. Here is an entry from my bone marrow unit journal.

November 1, 1994. Midwestern Regional Medical Center.
Day 14 in the unit, 6:45 a.m.

It looks like 8 a.m., it is so bright. I'm studying the movement of the sun in here. Tracy, the other woman in the bone marrow unit, died last night. Her parents and husband were there, and her sisters had flown in to see her last weekend. We weren't friends, but we were friendly. She was the same age as me, give or take a year. I liked her; she had attitude; a sharp sense of humor; an edge. She was my shadow because she was my age, and I liked her. But I cannot let myself compare myself with her.

This is the seventh day I can't leave the room; the beginning of my third week at the hospital. Tracy just died. She had been fighting her Hodgkin's disease for over ten years, her longest remission only lasting nine months. Her fight had been pretty constant: Hodgkin's, chemo, blood tests, hospitals.

I spent one year in heavy duty chemotherapy, thirteen, five-day, in-hospital treatments. At home, my husband John gave me Interferon shots (a drug supposed to build up my immune system) two nights a week. After each shot, at about four in the morning, I would wake up, freezing, though actually hot with fevers. The fevers gave me mouth sores; the mouth sores made it so painful to eat, I eventually dropped to under one hundred pounds, and could only eat with gums numbed by medications. My meals consisted of frozen yogurt or high calorie vitamin shakes. I was tired from chemo, tired from teaching over thirty hours a week at the university to keep my health insurance. (My benefits soon got cut anyway. May God bless the COBRA program. May God not bless the administrators who cut my benefits knowing I was in the middle of cancer treatments. So much for treating your part-timers like human beings.) I was too weak to carry my books to my classes, so my parents bought me a rolling bag lady cart for Christmas. Other professors helped me cover the one or two days a month when I was out-of-state having chemotherapy treatments.

It was a very bad year, August 1992 to August 1993. I slept a lot. I would sit in one spot of the couch, very still, to lessen my nausea. Can I imagine the year I spend in heavy duty chemotherapy multiplied by ten? All those shots and mouth sores. All that weight and strength and breath loss. All that time in survival mode. After that first year, I got a nine month break and an easy three month chemo tour. I was all fattened up from my wedding (which was very curative.) All rested up because I was no longer working. Also, the second time around, there was no Interferon, so there were no shots, no fevers and no mouth sores. Yes, a much easier run.

I think of Tracy. I heard she had to have her lungs drained a week back. I stopped by her room twelve days ago, before I was put in isolation. She was in such pain that it hurt her to talk. Her marriage had been struggling a long time, and that, too, was getting her down.

Bless Tracy's spirit. May it be in a good place without the suffering of her last decade.
Bless Tracy's family. Her mom, her sisters, her dad.
Bless Tracy's husband. Help him with his grief. Let heaven, not humanity judge whether his leaving her pushed her to her death. It wouldn't be the first time illness ended a marriage. Please don't let it happen to my John and me.
Let me live a long and happy life with my new husband. Let my cancer be cured. Let us have a baby even.
Bless Tracy, one more time. We only met four or five times, but I liked her. She is, was, sharp-edged, funny and determined. Take her to the place where there is no pain. Amen.

Exit Strategies

Here is a second sonnet from the series by (me) Julie Moulds. The images in it are all, pretty much, situations Edward Lear illustrated in his limericks. The poem has hopes of humor.

Exit Strategies

You might be bit by a rattler hid in your boot
or choked while you're drinking green tea;
could be killed by the kick of a madwoman's foot
or drowned in the syllabub sea.

You could murder yourself in New York with a fork
or melt in a crater of lava.
You could die by too frequently popping the cork
of your favorite brand of Marsala.

You might be gored by a virulent bull
or bored by a brute of a bee.
Your skull could crack like a china doll's
when you fall from a three-story tree.
You could be split in two halves by a horse,
or you might go more peaceful, of course.

Cancer Humor

I have a strong interest in folklore and oral histories, and the first two times I was treated for cancer (1992-94), I decided to gather funny stories about being diseased. Below is a reproduction of the (unpublished) article I wrote in 1995:

CANCER HUMOR

I have been through sixteen months of chemotherapy, one failed remission and a bone marrow transplant. Currently I enjoy good health. These are the best funny cancer stories I collected firsthand during that time. Yes, even cancer can be funny in its own morbid way. I have gotten permission from all tellers to relate these tales to you.

THE DOOM SAYING DOCTOR

A woman cancer fighter was in her patient support group and told the story of her doom saying doctor. Several years earlier (she told her group) her original oncologist had given her a diagnosis of six months to live. He advised her to get her affairs in order. She switched doctors. Her friends, angry, said, "You should go back to that doctor and tell him he had no right to make that pronouncement." The woman replied, "I tried, but he died six months after my last visit."
(Story overheard at Midwestern Regional Medical Center.)

LUG NUTS AND TUMORS

A young woman in Kalamazoo who uses humor to cope with a pre-cancerous breast condition and its related operations told me several stories.

She had many humorous names for her breasts, bruised and full of huge black stitches that showed through her clothing: Monsterboobie, Dubious Boobious, and Frankenboobie. She stated she wanted to attach two lug nuts to either side of her breasts to match those on Frankenstein's head.

She told another story about being very upset by her tumors and going to a Seven-Eleven to buy cigarettes. She saw the bowl of pennies so frequently at convenience store counters, with the sign stating: "Got a penny? Leave a penny. Need a penny? Take a penny." Her mind immediately turned those words to: "Got a tumor? Leave a tumor. Need a tumor? Take a tumor." Then she started laughing hysterically and left the store, forgetting her Marlboros.

THIS WON'T HURT A BIT

We've all had good and bad doctors. The doctor fared badly in another tale, told by the young woman above. "Lisa" was having her stitches taken out after yet another breast operation. She was on the examination table, the nurse holding her firmly to it. The male doctor snipped off the end of her stitches (which were both external and internal) and held the catcut in a clamp. Then he literally started walking backwards across the room, pulling the stitches out. Lisa, in terrible pain, watched her breasts flip-flopping back and forth and felt like her ribs were coming undone.

The doctor said (and she imitated his paternal accented voice), "What you are feeling is a slight tugging sensation." By her report, when he drove his car past her on another day, she "gave him the finger and tried to run him off the road."

HAIR TALES--BEE TATTOOS AND MISS PIGGY

Much of the cancer humor I've found revolves around hair loss, common in both chemotherapy and radiation. Charlie Burke, one of the nurses in my bone marrow unit, told me of the patient who "had a bee--no a hornet tattooed to his head. He said it helped him fight the cancer better."

A month after I was married, I had a wedding reception in my hometown. The hair I'd had for my wedding was gone before the party, and I'd camouflaged my skull with a silk scarf and straw hat. Stating the obvious, I cheerfully went around telling relatives I was bald. It was an ice breaker. Family friend Carol Knowlton suggested I wear "one of those frilly baby hairbands they put on bald infants," and went on to say how silly they looked on her granddaughter.

Laura Robinson told the story of her friend, Michelle, who was fighting Hodgkin's disease. Both young women worked as waitresses at an Italian restaurant, and Michelle had lost her hair to chemotherapy. One day for fun, Michelle wore an obnoxious wig to work--it was huge, high, curly and blonde, and made her look, "like Miss Piggy, or like a lion from the front." The customers pretended nothing was unusual because they did not know how to react.

THE BARBER

When my hair abandoned me the second time, I gathered it up from the bottom of the shower and saved it in a zip-closed bag. It had returned so curly and pretty. My husband found it disturbing to see that bag of disembodied hair sitting on the dresser. After the fall, there were two grotesque clumps and a Mohawk strip left on my head that had somehow withstood chemotherapy. Deciding I'd rather be entirely bald than look at these tufts, I went to the barber. I told him, "This is the first time I've been in to a barber shop." He replied, "It's not like going to the moon," then charged me full-price to shave off the remnants of my hair.

NICKNAMES AND THE BEST STORY OF ALL

Last year my husband called me his cue ball, his bald egg, his stub head and his pearl. When my hair grew long enough to not be stubbly, he joked that his stub head had gone away to join a colony of stub heads and that I was an imposter. And numerous times, from women especially, I have heard jokes about looking like a bald uncle or saving shampoo.

I'd like to end with a quote from cancer fighter Sharon Pendleton. Not willing to lay in her hospital bed for six days a month during round-the-clock chemotherapy, she walked through the circular halls of Midwestern Regional Medical Center, her rolling I.V. in tow. Another rolling patient commented on Sharon's swift pace. Sharon, without stopping, replied: "If you keep moving, they can't throw dirt on you." Good advice for us all.

CALL FOR STORIES

If you have a funny cancer story you'd like to share with me, please send it to me via this blog. Don't be shy. Best, Jumblie Girl

The Ostrich with a Football Neck

The first sign of my cancer came in 1991, during my last year of graduate school for Creative Writing. I'd gone to the collegiate clinic to checkup on something unrelated, and asked the physician about a swollen lymph node on my neck. He said I probably just had a cold--not to worry. At least that's what I remember hearing. I blithely took the doctor at his word, and from that day forward ignored (with determination)all other swellings that started to appear. Now, the clinician shouldn't have been so quick to dismiss the swollen node. But my refusal to believe anything was wrong with my rapidly inflating neck--I'd started looking like a football player--was delusional and costly. My lymphoma could have been caught in Stage I. Piece of Advice #1: Do Not Ignore Anything Lumpy or Discolored That Shouldn't Be There (even if you are in your twenties, loathe going to doctors, and think you're healthy.) Piece of Advice #2: Do Not Always Believe Your Physician.

When I finally went back to the clinic again, it was nearly a year later. I'd started losing feeling in my right arm. Even an ostrich can't ignore this sort of sign. Turns out, I had large tumors in my armpits. The doctor--the same or a different one; who knows--seemed alarmed, and mentioned I might have Hodgkin's disease. He never used the word "cancer," and ostrich that I was, I didn't know that's what Hodgkin's disease was. That appointment was on a Tuesday. By that Friday, I was at the local hospital, sedated, being biopsied. I was full of cancer--late Stage III (which, for lymphoma, means lymph involvement in the upper and lower parts of the body, but not quite yet in the bones.) It was summer term. I was teaching a writing course. I didn't tell people at work for quite a few days. I remember the hallways in that tower of offices seeming so empty.

Best, Jumblie Girl

A Crabby Discourse

Despite fifteen years (on and off) with the condition, I never connected cancer the disease, to cancer the zodiac sign. At the garden where I work, I asked my sage friend Susan if she knew the link. Susan, empress of a mountain range of obscure information, came through. She said, "It's something about how doctors thought cancer tumors looked like crabs." This tidbit screamed out to be researched.

It turns out that the physician Hippocrates, so famous for his oath, first named cancer, "karkinos" and "karkinoma," from the Greek words for "crab." He thought tumors he examined looked like the water creatures--with their "hard center, and /their/ spiny projections" sprouting out like legs (www.chemheritage.org). Galen (130-200)a Greek physician in the Roman empire, is credited for naming the disease, "cancer," using the Latin word for "crab." From the same root, we also get the word "canker," as in those embarassing sores.

Galen was considered the leading Western physician for over a thousand years. This is far too long for any doctor to be a leading expert. (I'm only alive due to rapid medical advances.) Galen treated gladiators and emperors and sponged up great philosophies. He dissected dog hearts, documented opium overdoses, linked cancer and epilepsy to depression, and invented cold cream. Yes, like the rose-scented Pond's cream I fondly remember my Grandma Mona wearing. Apparently his best work came out of his years as a gladitorial physician--that ring a birthplace for many wounds. I wouldn't want to be a rat in that laboratory. Long before the Renaissance, Galen was a Renaissance man.

As for the Zodiac's crab, a water sign, it didn't appear in the English language until the Normans introduced it before Chaucer. It is the dimmest and darkest of the constellations. "Chaldeans and Greeks both believed that the Gate of Men, the gate by which souls supposedly descended into human bodies, was located in this constellation"(1). Souls were supposed to reenter heaven after death through Capricorn, on the other side of the sky.

I am a Capricorn, born on the feast day considered most unlucky of the calendar--the Massacre of the Innocents. But I tend to ignore omens not in my favor (such as charts of survival rates.) I only give credence to statistics that are to my advantage. It's the only way to go.

Best, Jumblie Girl

(1) (Jobes, Gertrude and James. "Outer Space." New York: Scarecrow Press, 1961, page 131.)

Rabbit Head

Here is a cancer sonnet from a series written by (me) Julie Moulds

Rabbit Head

My dog, Buddha, dunks himself entirely
in a snowbank, pulling out a head
gnawed off a rabbit, ragged and still red,
its ivory ears intact. I had to pry
it from his trapper jaws, a whiskered
John the Baptist dragged from bed.
How simple it is to be found dead
with all that rots inside us--like a fire
we failed to notice, in a hut of ice.
At some point we all hollow from within,
our disease a mottled gray or brown, that face
inside us, erased
by rain and wind.
I'm reproductive of original sin.

Musee des Beaux Arts

Musee des Beaux Arts
by W.H. Auden

About suffering, they were never wrong,
The Old Masters; how well they understood
Its human position; how it takes place
While someone else is eating or opening a window or just walking dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.

In Breughel's "Icarus," for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water; and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
had somewhere to get to and sailed calmly on.


At a writing conference, a poet explained the history of this poem---that it ironically portrayed Auden's fears for the world with the rise of the Nazis and the infighting Communists in the late 1930's. Then the poet showed a reproduction of Pieter Brueghel's painting, "The Fall of Icarus."

And I thought, yes, that's likely all true, but I was irritated he didn't mention the obvious. The poem perfectly portrays the nature of suffering. How many times has something hard happened to a friend--a death, a disease--and we send a card or send up some prayers--but are secretly grateful we've been spared. And we go on our doggy way. And I'm not saying that's wrong. You can't worry about every person and every issue at all times. That would be too much weight to carry.

But something changes when it is you touched by disease. You see it in the celebrity world all the time. A sport's star's daughter needs a bone marrow transplant, and, because he has been personally, desperately affected by the issue-- of the need for donors to the bone marrow registry--he appears, a sudden activist, on television and in magazines.

I was the same way. A few months before I was diagnosed with cancer, I read Gilda Radner's autobiography, and I thought, "Well, that's sad." But I felt her story far more keenly when I found I had the same monster in my own body. Dehumanizing and rehumanizing me.

Best, Jumbliegirl

How Pleasant to Know Mr. Lear

Edward Lear is first on my list of a hundred authors, if you want something to read during chemotherapy or radiation. I'm serious. His limericks are perfect little essays on everything human and inhumane. When everyone is staring at your bald head, read this limerick:

There was a young person of Ayr
Whose head was remarkably square;
On the top, in fine weather, she wore a gold feather;
Which dazzled the people of Ayr.

In Lear's illustration, the men of Ayr are more horrified than dazzled by her bald, cubic head, embellished with ribbon and feather. But you have to give the girl credit for her flair.

Feeling nauseous? Lear covers that too, this time with one of his "Old Persons."

There was an Old Person whose habits
Induced him to feed upon Rabbits;
When he'd eaten eighteen, he turned perfectly green,
Upon which he relinquished those habits.

Lear's Old Person was a victim of his own gluttony, but the result was the same as from too much chemotherapy.

Or perhaps you're down about your latest treatment. Then here's the verse for you:

There was an old man whose despair
Induced him to purchase a hare:
Whereon one fine day, he rode wholly away,
Which partly assuaged his despair.

I know, at times, I would like to ride a rabbit away.

Joseph Campbell insists that the heroic journey must include separation, initiation and return. Separation from the healthy, trial by treatment and a triumphant return (you hope) to health. But Edward Lear wasn't a big fan of the return. He knew you couldn't count on it. His characters tended to go off to some sort of utopia and never come back.

But I am in a dark mood tonight. Lear also covers joy magnificently, particularly in this verse:

There was a Young Lady whose bonnet,
Came untied when the birds sate upon it;
But she said, "I don't care! all the birds of the air
Are welcome to sit on my bonnet!"

How I have wanted to be that woman in a hat in Lear's illustration, pirouetting with owls and crows and ducks. Clearly that woman knows life is about dancing.

Best, jumbliegirl

First Day

I am new to blogging, though I have journaled for a lifetime. I am musing on cancer, in my case, non-Hodgkin's lymphoma. I am musing on my muse, cancer, which I have had six times. How it, like Mrs. Bennet's nerves, has been my companion these last fifteen years. It shaped my sense of humor (black to blacker.) It shaped my family life (causing infertility, thus closing doors to a biological child.) It shaped my writing life (lots o' cancer poems and a very macabre operetta.) It shaped my marriage, testing my husband and I right from the start. It shaped my finances, my energy level and my optimism.

I am ridiculous and sublime. I am a six time cancer survivor. I am an anomaly. A guinea pig. I have been CHOPped, transplanted, radiated, IV'd, biopsied, cat scannned, transfused. I have been bald, eyebrowless, skeletal. I have puked in the bushes and passed out on the lawn. Like a noxious weed, I am hard to kill. And I have to start over again, with spots on my last CAT scans that must be dealt with soon.

Twelve years ago, I was a patient at Midwestern Regional Medical Center. There I met a cancer patient, Sharon Pendleton, racing around the aisles with her rolling I.V. When I am down, I remember what she said: "If you keep moving, they can't throw dirt on you. "

Until next time, Jumbliegirl