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A Weight Like Hope

JULIE SEILER MEMORIAL SCHOLARSHIP

Three essays written by Julie:

Thinking Outside the (Nature) Box

A Weight Like Hope

My Own True North

Essay written by The 1st Recipient of the Julie Seiler Memorial Scholarship Fund

I use my precious day off between guiding school groups to go to Planned Parenthood for an exam. I’m sure I will be told that I have lumpy breasts, and to take vitamin-E and reduce my caffeine and get re-checked in a few months – the same advice I was given last time I had a lump. But this time, the clinician feels the lump and quickly says, “We’re going to refer you to a surgeon.”

After making an appointment with the closest one, I leave the office in a daze. I could go back to work for the rest of the day, but feeling overwhelmed and on the edge of something huge, I go instead to my new apartment. The vacant apartment, which my partner Karen and I are to move into from our home in Virginia in less than two weeks, is on the ground floor of an old farmhouse on Main Street in Putney, Vermont, a village of 2,000. I enter the unlocked front door and lie down on the sun-warmed gray plywood floor in the back bedroom, face down.

The surgeon, Dr. K, is a large, bear-like man with a friendly silver moustache. He ushers me into his office and I sit in the leather chair opposite his desk and listen to what seems like the interminable history of the breast. He rambles on about breasts, breast cancer, and the absolutely one-in-a-zillion chance that my lump is cancerous. It is nearly an hour later when he finally finishes his lecture and leads me to the exam room. His friendly banter slows a bit as he feels the lump and suggests an ultrasound – and would I like to watch? I had figured that the image on the first ultrasound of my life would be of a tiny, snowy fetus, not a menacing-looking lump. Dr. K’s cheery demeanor fades and he asks his assistant to “bring the biopsy kit.” He uses a small gun, like a staple gun, to shoot a hollow-cored needle five times into the side of my left breast, and the result is a collection of angel-hair breast pieces swirling around in a small jar.

I’m scheduled to get my results on Monday, the day after a whirlwind weekend of moving. On Friday, I fly home to Virginia and Karen and I spend Saturday loading our belongings into a U-Haul. Friends throw us a small going-away party in the afternoon. Saturday night we’re in a panic, and at midnight our friends Jackie and Jim come over and scrub our bathroom and kitchen while we pack the last odds and ends into the van. On Sunday we make the long drive to Vermont and unload early Monday morning, a handful of our new friends pitching in so that we finish before my eleven a.m. appointment.

When I walk into the doctor’s office, the receptionist gently says, “Where’s your partner? Didn’t Dr. K tell you not to come alone?” As soon as Dr. K rounds the corner into the waiting room, I know the results of the biopsy. His big warm face does nothing to conceal the sadness in his eyes, and I am barely seated in his office before he says, “I’m so sorry; I never expected this.”

“Fuck,” I say. “Fuck-fuck fuck-fuck FUCK.”

He looks at me for a moment, and then says, “Yes. Fuck. In my twenty years of practice I’ve only ever seen two other women in their early thirties with breast cancer.” He goes on to explain the treatment he recommends, but I’m unable to focus on his words as they speed by. I just keep thinking, “Impossible. Nothing will ever be the same.” He asks me if I’m interested in “breast conservation.” Breast conservation?? I respond that no, breast conservation as a global issue doesn’t interest me, but that yes, I’d like to keep mine if at all possible. How very strange it is. Growing up, as a tomboy, I hadn’t wanted breasts in the first place – and now they are trying to kill me.

When I return home from my appointment, Karen meets me outside and immediately knows that the news is bad. We head into the apartment, the maze of unopened boxes stacked high to the ceiling like impossible dreams. We came to Vermont for my promising new job, and to live a simpler life, but suddenly things have become terribly complicated. Overwhelmed, we spend the rest of the afternoon on our backs on the grassy hillside outside the house, adjusting to this new reality.

As we lie there in the grass, a young woman rounds the corner of the house. It’s Tonya, wife of Jamie, one of my coworkers at the wilderness school, and she has heard the news. I have only met her once, for a few moments, at a restaurant a couple of weeks earlier. She gives me a long, hard hug and hands me a geode, a dull, brown rock that contains crystals inside. We sit and talk for a while, and she tells me about her personal experience with tragedy. She and Jamie’s first child, Ezra, was stillborn last month and they are still reeling from the loss. She gives me advice: smash the geode to reveal what is inside; check yard sales for 25-cent plates to shatter, and drive whenever Karen and I go anywhere together, as a way of exerting some control over an otherwise out-of-control time.

The morning after my diagnosis, I wake up in my usual sleepy fog, blissful for a moment before the reality comes sloshing in like an errant, icy wave. I wonder how long it will be, if ever, before “I have cancer” is no longer the first thought of every day.

Karen and I go back to see Dr. K together and he outlines the standard treatment routine of surgery, chemotherapy and radiation. This time, I’m better able to pay attention. The receptionist gives me the name and number of Cathy, one of the other two young women Dr. K has treated. “It would be helpful to talk to someone else who has been through this.” When Karen encourages me to call Cathy, I object, “I don’t want a cancer friend.”

I meet Cancer Cathy the next morning at the Front Porch Bakery, where we sit outside in the big rocking chairs and share details of our cancers. I like her immediately; she’s a large woman with long, black curls and a happy smile. Besides, she has brought me two gifts: Dr. Susan Love’s Breast Book (the breast cancer “bible”), and a small, wind-up grimacing nun with boxing gloves who charges forward spewing sparks from her mouth. “I don’t know if you’re Catholic,” she says, “but I thought she might help.”

Later, I call my parents at their home in Germany to report my news. I tell them about the reference book and my father, stunned and confused, thinks it is the “Dr. Seuss-In-Love Breast Book.”

The gifts and flowers start arriving almost immediately. First comes the flower arrangement from my parents, which is a curious assortment of wildflowers and rather large tree branches (which makes more sense after my mother tells me she threatened the florist to not create anything “remotely funereal”). Next comes the large, pre-packaged “Get Well Box” with gummi band-aids and get-well fortune cookies, and a very expensive, very pink iridescent teddy bear with the increasingly familiar pink ribbon embroidered on its left foot. “There must be some mistake,” I think. “ I feel fine!”

Karen and I walk around Brattleboro, the ‘big’ town, bewildered. It seems so odd that the bustling of everyday life for everyone else is going forward, that the world has not screeched to a grinding halt. We walk hand-in-hand down Eliot Street, and I feel very young and very lost. I want to stop traffic, or grab the arm of a passer by, and yell, “Somebody help us!”

After two weeks in Vermont we reluctantly decide to move back to Virginia, because I have health insurance there and access to a better treatment center. Five days after surgery, on my 33rd birthday, I awaken from a blurry dream with the message, “This is going to suck, but it could be worse.”

Each set of “just to be safe” tests at the University of Virginia brings poorer results: the tumor is bigger than initially thought, the cancer has spread to my lymph nodes, the bone scan shows a suspicious spot on my sternum. I undergo a painful biopsy on the bone lesion and Karen and I head to Ocean City, Maryland, determined to have a “normal” summer weekend while we await the results. We have just arrived at the boardwalk and Karen is in line for french fries when I call our home voice mail from a pay phone and hear the oncologist’s forced cheerfulness. The spot is cancerous, moving me from Stage II to Stage IV cancer (there is no Stage V) in one drastic leap.

Statistically speaking, my long-term chance of survival is 0.5%. One-half of one percent. One of my doctors tells me that hey, that’s one in 200, and it might as well be you. Sometimes I can hold on to that feeling, and other times it just vanishes. Despite my prognosis, I’m considered a “survivor.” Which, it turns out, in cheery breast-cancer-speak, is simply a cancer person who hasn’t died yet. When, as author Barbara Ehrenreich wonders, does one go from “survivor” to “die-r?”

I’m torn between all of the alternative treatment options; everyone seems to have heard of someone who beat the odds on some weird macrobiotic diet or by visiting a miracle healer in Peru. I swing from thinking I should consume nothing but vegetable juice to thinking, “Screw it, I’m eating corndogs!” I’ve reconciled these problems by deciding that my unhealthy vices (red wine, Coca-Cola) cure cancer. Seems to me that anything a person hangs her hat on just might work, if anything at all is going to do it.

One night, I wake up in the middle of the night and can’t fall back to sleep. I look at Karen sleeping in the dim light and try to count how many more years she is likely to live: forty-five or so. Will she remember me? When I was in elementary school my family lived in Germany, where it stayed light until 10 o’clock during the summer. I can remember lying in bed in the early evening, the light still streaming into the room around the sides of the window shades, listening to the older kids laugh and shout on the playground below my window. It was practically unbearable, and just so unfair, that they were going on without me.

I initially think that this, cancer, is the worst thing that could possibly happen; that my bad luck trumps everyone else’s. I become angry when thinking about people with “wasted” lives, those who don’t appreciate life or who spend all day in front of the T.V. When I mention this to my wonderfully irreverent friend Donna, she says, “You don’t deserve this. Hell, I can think of three people I work with right now who deserve this more than you do.”

The question of “why me?” is troubling, and unanswerable. Is it genetic? Probably not – there is no history of breast cancer in my family. Is it because of the seven years I spent taking birth control pills? Is it that I grew up on numerous, possibly contaminated army bases? Is it a plan by some higher power, for some mysterious reason? Or is it just plain old shitty luck?

My sister Lisa says that God has a reason behind all things, even if we never know what it is. I envy her faith, sometimes, and her humor, always. After one particularly trying conversation with our mother, she says to me, “Hey, you are not allowed to make me an only child!” Before surgery she gives me a homemade card. It is my head, cut from a photograph, with the caption “@#!#!#!,” glued above a hideous, fluffy pink bathrobe she has cut out of a catalog.

My friend Sarah sends me a card with this message in flowery calligraphy on the front: “Worrying does not cure tomorrow of its troubles, it robs today of its strength.” On the inside, she writes, “I thought this was a good sentiment, but I understand completely if it makes you want to sock me squarely in the mouth.”

Other people, it seems, lose all social skills when confronted with my news. They blurt out whatever information and experience they have, whether or not it would be a good idea to share it. Once, during the winter, while waiting for a group of local kayakers to paddle with, I am marooned on the side of the road with the other early attendee. After gently deflecting questions about my really, really short hair, I finally say to him, “I just finished treatment for cancer.”

“Wow. What kind? Breast, I assume? Geez, at your age those things are supposed to be just for pleasure, or for feeding kids. My aunt has breast cancer. Just visited her. She looks terrible, is wasting away, weighs like 80 pounds, is going downhill fast.”

What do I say to such comments? Sometimes I just wait a moment, hoping that in the silence it will occur to them that they’ve said something stupid, but it doesn’t ever happen. I have yet to use my mother’s favorite line, which is “I’m sure you didn’t mean to say that.”

The dumbest comment, however, comes from a young physician’s assistant that Karen and I dub “Dr. Negative.” She tells me, after looking through my chart with pursed lips and many dramatic sighs, “Don’t be disappointed if this doesn’t work.” She later tells me it is her dream to have a llama farm, and I think, poor llamas.

I’m still unsure how to respond when people say I look great, and “Did they get all the cancer out?” Do I lie and say yes? Do I ruin their day by saying, “No, and I’m supposed to die”?

I decide, after seeing the women in the Cancer Center with patchy, mangy hair, divots of hair missing, that I will be in control of my head, if nothing else, by shaving it before any hair begins to fall out. My mother is appalled at the idea and thinks that I should wait, “just in case”; never mind that the oncologist said that 100% of people who undergo this chemo regimen lose their hair. When my sister tells her four children that Aunt Julie’s hair is going to fall out, nine-year old Joe brightly asks me, “Will you get a mohawk? That would be so cool!”

I walk the five blocks to Pelletier’s Barber Shop one Saturday morning at the beginning of chemo. The shop is long and narrow with three barber chairs on the right and several more chairs in a waiting area on the left, against the wall and directly facing the barber chairs. There are about a dozen men waiting – an old man sprouting hair out of his ears, a thirty-something man in a suit reading Maxim magazine, and a man in a John Deere cap sitting with his young son. No one looks up as I enter and stand between the rows of chairs. A barber with an amazing Elvis haircut quickly combs and lifts and snips his client’s hair. The other, older barber finally looks up at me.

“How long is the wait for a haircut?” I ask.
“For you?” I nod.
“We don’t do women’s hair here. This is a men’s shop.”

All heads in the shop look up from their reading and directly at me. I look around at the faces, the dusty sports pennants and local baseball team photos on the wall, the machine that dispenses hot shaving cream, the combs nestled in a jar of blue liquid. I can’t decide whether to stand my ground or run.

After what feels like a long time, I take a large step forward and say, more loudly than I intend, “I have cancer. I just started chemotherapy and my hair is going to start falling out this week. I promised my nine-year old nephew I’d have a mohawk for his football game today. Can you do that?”

All eyes shift back to the barber, and there is a long pause. “Yep, have a seat.”

His sure hands shake as he fumbles for the electric razor, and he asks several times if I am positive about what I want. None of the customers go back to their reading. After I finally convince him that I won’t cry, he begins to shave my head, leaving a strip of spiky hair from front to back. When I ask how much I owe him, he gives me a lollipop and says, “Nothing. It’s on me. Come back when it starts to fall out and I’ll finish the job.”

I try to make the best of my baldness by dressing as a giant squid for trick-or-treating with my sister’s kids, with stuffed pantyhose tentacles and my entire head and face painted purple. For our Christmas card photo, I attach suction-cup hooks on my head and hang ornaments from them. When chemo ends, my hair -- after a lifetime of being stick-straight -- grows back in curly. It is my most expensive perm ever, and it doesn’t last.

I read about a study of the relationship between attitudes and survival times of women with advanced breast cancer. The women were divided into four groups based on outlook: fighting spirit, stoic acceptance, helplessness/hopelessness and denial. Not surprisingly, the helpless/hopeless folks didn’t fare very well. But there were two surprises: stoic acceptance practically tied helplessness for last place in the survival race, and fighting spirit and denial tied for the longest lifespan.

I swing between those four attitudes – sometimes hitting all four within a matter of minutes. I seek advice from a psychiatrist, who tries to help me deal with my diagnosis. When she finds out I am a wilderness guide and nature lover, she is thrilled: “I’ve made a set of relaxation tapes and I think you’ll love them!”

I decide to set aside my skepticism and give them a try – and they work, though not the way she intended, I’m sure. The first tape is “Cows in Thunderstorm,” and it is very homemade. I laugh, picturing Dr. G in her bathroom; sitting on the floor with the shower running, and hurriedly turning over those little cans that make “moo” sounds.

Karen hears that people who attend support groups live twice as long as those who don’t – so she becomes obsessed with trying to get me to join one. I don’t think I’m much of a support group person, though – my support group is friends and family, not strangers with cancer. I continue kayaking throughout my 16 weeks of chemotherapy. My healing comes through doing what I love: spending time outdoors, and teaching kids in the wilderness.

Reluctantly, I travel with Karen to Philadelphia for a conference of young women with breast cancer. I go for Karen, so she can feel like we are actively doing something. But I am the one moved to tears when we enter the ballroom at the Hyatt and there stand 700 young women with breast cancer, all diagnosed under the age of forty. I learn that 11,000 young women will be diagnosed with breast cancer this year and 1,300 will die. A few months ago, I felt as though I were the only one; now, I look out over the room and wish there weren’t so many of us.

Misha, my employer and mentor, asks me one day in his thick Russian accent if I am afraid to die.

“Of course,” I say.

As a child, I would occasionally close my eyes and try hard, really hard, to imagine what it would feel like to be dead. I couldn’t fathom it then, and it makes even less sense now. Misha says he isn’t afraid of death at all, and I tell him if anyone had asked me that question a year ago, when it was abstract, my answer would have been no, too. But now that it is staring me in the face, of course I’m scared. I’m afraid of missing out, I’m afraid of not seeing how my friends’ and family’s stories unfold, I’m afraid of dying a slow, painful sad death. Misha is quiet for a moment, and then looks me in the eye and says, “You know, Jul, I’ll shoot you in the head. I would do that for you.”

I alternate between altruistically wanting Karen, if I die, to go on and find love, and just being really pissed off that there might be others after me. My rage and sadness make their way out disguised as humor, and I say things like, “Maybe your next girlfriend will be a good singer.” Karen isn’t very amused, but I can’t seem to stop making these remarks. She finally figures out how to deal with me: the next time I make a “your next girlfriend” reference, she says with a smile, “You know what? I think maybe I’ll just go find her now.”

In the meantime, life moves forward. I’m leading a wilderness trip for women with breast cancer, and Tonya and Jamie are expecting a child next month. I still have Tonya’s geode, intact, and I hold its weight in my hand like hope.

Julie Seiler

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