Friday, July 14, 2006

Ringlets Down the Drain

This entry originally appeared in "Leap Years: Women Reflect on Change, Loss and Love," edited by Mary Anne Maier and Joan Shaddox Isom (Boston: Beacon Pr, 1999.)

July 20, 1994

This morning I stood in the shower, water pounding my head, until the last seventy percent of my hair fell out. I was in there a long time. I'd scoop a big handful of hair off the drain. More would fall. I'd kneel again in the pulsing water, keep scooping handful after handful onto the yellow bathroom mat, keeping the drain clear. I've saved all my hair from the last few days, set it in a pile on my dresser. I don't know why. I just wanted it. It had come back so beautiful: darker, almost black with no gray, and curlier than it had been since I was six. I went in the shower with diminished yet respectable hair, and came out almost bald. Only a few odd hunks survived--I looked comical, grotesque. All the cue-ball people came to mind (some by shaver): Yul Brynner, Sinead O'Connor, Captain Picard, Uncle Fester.

In a way, I'm excited about by cue-ball head. About the gaudy ways I will adorn it: bright African hats, silk scarves, red bandanas, and purple baseball caps from bars. I have a large selection assembled from my first time through this.

Another new experience: going to the barber. I decided to go all the way. The five percent of my remaining hair--ugly clumps on the top of my head and a Mohawk strip down the back--had to go. If I'm going to be bald, I'll be bald. No pitiful clumps and sad wisps. I'm going for the Woman of Power look.

It was odd stepping into the lime-green walled, male domain of the barbershop. It was right after lunch, 1 p.m., and he unlocked the door to let me in. "I've never had my hair cut at a barbershop before," I said.

"It's not like going to the moon," he said, then proceeded to shave off my tufts.

It was too quiet in that chair, so I told the barber how my second batch of hair, after thirteen chemos, had been so much nicer than the first.

"That's because it was healthier hair," he said, in the tone of one who really knows. Anyway, there wasn't much to work with, but he took his time, clipping it then shaving it again, using a little vacuum cleaner to suck the stubble off my head and neck, brushing off my now-pink skull. He charged me full price.

I came home and John was typing. I yelled, "I'm bald! I'm bald!" and whipped off my hat; spread my arms and started spinning in a circle. I started to dance because this has to be funny. I have to make this funny.

Tuesday, July 11, 2006

Turtles, Zoos, and a Picnic with Ruth

This entry originally appeared in "The Leap Years: Women Reflect on Change, Loss, and Love," edited by Mary Anne Maier and Joan Shaddox Isom (Boston: Beacon Pr, 1999.)

July 19, 1994. From our home in Richland, Michigan.

Today I saw giant turtles mating at the zoo. My friend Ruth, her son Brendan, and I first heard the sound: a long oomph, a pause; a loud oomph, a pause. He took his time, slowly enjoying his business. And in front of the children no less.

The zoo creatures all had mates, except one or two, someone to sing or squawk or bleat or chatter or moo with. I also received a letter saying my bone marrow transplant had been deemed appropriate by my insurance company. Thank God. The go-ahead has been granted. I phone-interviewed with Social Security, $500 a month when I'm sick, which will help because my bills aren't going away. The doctors say I shouldn't work for at least six months. Things were already tight on my part-timer income. Part-time instructors make a pittance.

Later, we--John, Ruth, her four-year-old Brendan and I--had a blanket picnic in our yard, had a distilled water fight and jumped rope, playing snake and chase the end of the line. It was glorious.

And my hair is falling out like crazy. I pick at it like a scab, pulling it out in fingerfulls, ironing my scarves. I take a gold, blue, red, and green one; tie it to a straw hat. Tomorrow I will go to the barbershop and have what's left of my hair chopped off, butched. It's hard for me to see it go piece by piece.

On the news tonight, a woman with breast cancer had just found out, after a remission, that her lung cancer had come back; it had metasticized to her brain, lung, liver. She talked about really living, how each day is a gift.

Living is better than language.

Monday, July 10, 2006

Variations on My Room in the Bone Marrow Unit: Cows

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

(published in "The Woman with a Cubed Head" by Julie Moulds.)

Marc Chagall's peasant is milking a red Jersey cow
incessantly, letting flow a river of cream across
a muddy floor. Here is a peaceable kingdom of cows,
Danish next to Holstein next to Swiss. The bulls have had
their testosterone lowered with medication and now lie meekly
with the skittish rest of the herd. They no longer bang
their steaming heads against the barn wall when I enter.
The hospital nurse, in a cow uniform, keeps on trying
to tie us into blow gowns, taking advantage of our new
docility. This room is as large as a field but is still
a room. It opens with a double-hinged hospital door.
I sit in a corner, at a drug store soda counter, having
a coffiee milkshake. After blessing the cow and coffee bean,
I lace the shake with my latest prescription, a syrup
for mouth sores, a Christmas gift from my pharmacist.
A Holstein serves me, like Elsie in her apron, and a Longhorn
tries to pick me up, but he is easy to resist.
I prefer men, though I know there are other options.
Chagall says hello, but isn't interested in females without hair,
however jewel blue and red my scarf is. After my shake
I sleep on clean heaped straw. A nurse hooks me up
to an I.V. of chocolate milk, vitamin fortified.
She gossips of great bulls she has known, steamy nights
of alfalfa and Merlot with a Beefmaster in Vegas;
and that recent "menage a trois" with the Angus brothers
in a pole barn. I make up some travels to India, and a tryst
with a Brahman bull as she checks all my lines:
I.V. tubes flowing in, and Foley catheters running out.

Thursday, July 06, 2006

Chemo Honeymoon

This entry was first published in "The Leap Years: Women Reflect on Change, Loss and Love." Edited by Mary Anne Maier and Joqan Shaddox Isom (Boston: Beacon Press, 1999.)

July 2, 1994: One week after our wedding, three months before the bone marrow transplant. My first chemotherapy, after a nine-month remission, at Midwestern Regional Medical Center (MRMC), Zion, Illinois. My fourteenth chemotherapy treatment.

I think I'm better at surviving than living--real living, real joy. Maybe that's why I've done all right with all my months, years of chemo. It's necessary, and I'm a survivor. My husband, John, says he's the opposite. I could see him wigging out in here--the enclosed room and the building you can't leave. (He's claustrophobic. Even when he has the whole world to roam in, he still feels closed in.) The image of those evil cells eating up his body would destroy John. But John knows how to live. He is the most violently alive person I have ever known.

At living, I have so often failed, caught up in the insignificant microdramas: grading school papers, straightening the dirty house, taking care of the mechanics of it all. I got mad at myself the other day in our honeymoon cabin. I was addressing thank you notes while John was scrawling down the beauty of our Upper Peninsula cottage on Lake Michigamme. Now here, in a hospital room, on drugs, addressing envelopes makes sense. Trapped in a white room for five days, it's a good use for the long hazy hours.

Today I walked fifty minutes with my rolling IV around the hospital's circular halls. The IV ran out of juice and started beeping. I pushed my freedom to the limit, because normally the IV (and thus me) must be connected to the plug by my bed. I walked to Fred and Ginger's "Shall We Dance?" and "Swingtime" soundtracks. A glorious Radiola tape. I felt so happy. So alive. I was in the trenches. I was a woman of power. A newlywed. I was not going to let the evil cells get me.

And besides, I am convinced of the curative powers of Fred Astaire. This time round Fred will heal me. It's part the singing. It's part Fred and Ginger's slyness. It's part the dancing. They are tap dancing on the tape. You can see them, feel them crossing art deco floors under spotlights, feel them twirling inside your body.

I think of Galway Kinnell's "Last Songs," the closest I've ever come to having a creed: "Whatever it is that keeps us from heaven--sloth, wrath, greed, fear--could we only reinvent it on earth as song." And dance. For Fred and Ginger, I must add dance.


I am back in Cancerland. Despite all the time these last fifteen years I've tried to deny this, I am resident of that country. Perhaps permanently. My disease, all appetite, has come back an even half dozen times. This morning, looking at other cancer sites and blogs, my heart (surrounded by enlarged lymph nodes) sank. So many sites were powerful or supplied solid information. But, and I am tearing up again, their words made me want to run away. I thought, “I do not want to be one of you. I do not want to be in your club.” Tough luck, cookie, you are.

I am not going to cry. I am in a public place. This time, another coffee shop—Water Street Coffee Joint—with its fine deli of delectables and delicious beverages I could make for one twentieth the cost at home. But who wants to be home, with all of its concerns crying out (dishes, laundry, clutter.) My husband and son are at a picnic involving potato salad and lots of athletics. I am here with Earl Grey.

Yesterday, I got an encouraging note in the mail, where an acquaintance forgave a small debt. Part of me believed she’d returned my payment out of pity, and, briefly, I surged with anger. This is irrational and hypocritical, as I do this sort of small generosity frequently. (To mix religious terminology, I strongly believe both in grace and good karma.) Her gesture was kindly; I know this. But my vanity got in the way. “You are not outside the human race. You do not need special treatment,” my Vanity said. I imagine her standing gaunt and tall in a magnificent outfit, looking something like Cruella DeVille. Vice usually has more flair than virtue.

Today I ask for grace in accepting the generosity of others. Acts not done out of pity, but as a way to help, somehow, a situation they can do very little about. When illness hits, our friends and loved ones are outside of us and often feel helpless. And Lord knows, my husband and I have needed these kindnesses, large and small, over the years. People teaching a class for me, keeping our son overnight, or helping us make the odd mortgage payment. Thank you and thank you. I appreciate you walking the border of Cancerland with me.

Best, Jumblie Girl

Tuesday, July 04, 2006

Kiddy Lit in Cancerland

This entry first appeared in "The Leap Years: Women Reflect on Change, Loss, and Love," edited by Mary Anne Maier and Joan Shaddox Isom (Boston: Beacon Pr, 1999.)

July 3, 1994. At Midwestern Regional Medical Center, during chemotherapy.

I'm doing some Children's Literature visualizations (a way to use the mind's power to focus on the body curing itself.): I could imagine Russia's Vasilisa the Wise pouring the Water of Life through my veins, by way of the chemotherapy sacks; or Alice in Wonderland by my bedside, feeding me anti-cancer cakes; or Baba Yaga, the witch from Russian folklore, eating the cancer cells like tree trunks. I'll try out the cannibal witch. The first two are far too peaceful. Wrath makes more sense to me.

Later. I am angry at the nurse who said she can't disconnect me from my IV to shower. "Why not?" I ask. "You're on twenty-four-hour chemo," she states then just leaves. Through thirteen months chemo, nurses have always let me take a daily shower. I can't even change my shirt without a nurse unhooking from the IV. I'm caged. And I smell because my body is sweating strange chemicals. After breakfast, I will buzz her and make her help me. Be rude back.

July 5, 1994--Donna

This entry follows the one just posted, and also appeared in "The Leap Years" (Boston: Beacon Press, 1999.)

July 5, 1994: A later memory of July 4.

The nurse said to my roommate, "Donna, try to slepp. Why don't you sleep?"

Donna replied, "Because I might die." She knew how close she was. She was tenacious of life. Though later that night, she repeatedly took off her respirator in our blackened room. I wondered if delirium or a desperate weariness overcame her. I lay in darkness, in my hospital bed, listening for the change--when her respirator was off, the rhythmic hissing would stop. Then I buzzed the nurse in alert. After several episodes, the nurse connected the respirator to Donna's face with strong tape so she could no longer remove it.

Why did I keep buzzing the nurses? Donna was suffering so much, death would have been a relief to her. I know why. I was afraid. I did not want Donna to die while I was in the room.

Fourth of July

This journal entry was written a few months before my bone marrow transplant, during treatment at Midwestern Regional Medical Center. The date: July 4, 1994. It originally appeared in "The Leap Years: Women Reflect on Change, Loss and Love," edited by Mary Anne Maier and Joan Shaddox Isom (Boston: Beacon Press, 1999.) It seemed appropriate for the holiday:

The nurse on the night shift says to my roommate, Donna, "Try to sleep. Are you afraid to sleep?" Donna replies, "Yes, I'm afraid I'll die."

Jesus. No wonder why she has been fighting to keep her glazed eyes open all day.

What right do I have to feel separate from her, even superior? I've got the same demon in my body. I've had nine month's rest from cancer, gained back my lost weight and hair; I look normal to the normal eye.

I see fireworks through the thick window in my hospital room. Gold, spermy light. Will I have children? Should I worry about fertility when my general survival is at stake? The woman in the next bed--skull, bones, and slack skin--is being eaten alive, is afraid to sleep. Afraid she'll die in it.

One flaming rocket just up, round and bright as my last week's bridal bouquet. I can see the Fourth of July onlookers, listen to their catcalls dimly through the glass. They feel like ghost people, muffled, separate from me. Donna and I are like bruises beneath the hospital's skin.

More explosions. A heart. A sky sparkler. A garden. A carnation. I am alive in this world. Purple is my color. I share a room with someone too tired to eat, fighting to live. A green burst for life. White for hope. Pink for love. Gold for magic. I can barely hear them out there with their watered-down crowd sounds, their oohing and aahing. A red for passion. A peacock. A sequined 20's dress. The hospital room is reflecting off the dark glass: the white curtains, the blinking red lights. The white privacy curtain is separating me from death. Outside, an explosion of colored flowers and stars. "She's in a position she can't see the fireworks," the nurse says. "How sad."

The fireworks end suddenly. Lightning strikes, so the City of Zion stops the show. It's my second round of chemotherapy treatments. I've already had thirteen months. It is the second round, the first chemo, the fourth day, the Fourth of July. Not the first holiday I've spent in here.

No Benadryl this chemo until tonight. That's why I've been so clearheaded, which isn't my usual in here. I don't need all the Benedryl they pump into me. I'm going to tell the doctors not to use it on me anymore, or at least cut the dose in half. It makes me too dopey and I have a say.

I am Dorothy, blue-ginghamed, and able to face down mock wizards and lions.

Just before I sleep, John telephones, says to me, "I'm surprised the hospital hasn't grown chicken legs, like Baba Yaga's house, and swum across Lake Michigan to bring you back to me."

Sunday, July 02, 2006

Trying Harder to Live

I need to try harder to live. I once was better at fiercely fighting disease. I was a woman of power, speed walking an hour daily at a local golf course, taking mega immune vitamins with every meal, and creatively visualizing my immune system eating my disease. I read scores of heal-yourself books and watched Fred and Ginger dance, whirling in white spats and feathered dresses.

I think of those punch-in-the-face clown dolls filled with air I wanted so badly as a child. The kind that you'd jab and they'd bounce right back, ready to be hit again. (As a girl, I was known for my bad temper.) In the beginning of my fight, I was like Sugar Ray Leonard, all dance and jibe, punching my disease on its red nose, over and over, determined to prevail. But with each relapse I started staying down longer--one, three, six. Gradually, I switched from being Sugar Ray to being the clown, my plastic head concussed repeatedly by the "Big C." And lately, I feel I've started to deflate like an old balloon. I barely bounce back at all. I say again, I need to try harder to live.

A few weeks ago, a duo of psychics told me I was depressed (I knew this already) and to do something about my despair. They didn't channel the spirits of my favorite authors--always a secret hope of mine--and give me some encouraging message from a literary giant or giantess. Though they did say that one of my mom's cousins, known for her razor wit, said she'd kick my butt if I didn't buck up. I've visited psychics a half dozen times over the last fifteen years, about one visit per relapse, because they're more fun than therapists (who I've also visited on occasion. Why not.)

Anyway, the sisterly psychics said do something, so I started writing my column, something I've considered since January. Sometimes I need to pay thirty-five dollars a half hour to hear the obvious. You need to try harder to live, Julie. Try harder.

Best, Jumblie Girl

Wednesday, June 28, 2006

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