Tom Snee, Office of Strategic Communication, 319-384-0010 (office), 319-541-8434 (cell)
The biggest thing possible that can't go right
The biggest thing possible that can't go right
The biggest thing possible that can't go right
Molly Barnhart transferred to the University of Iowa after spending a semester at Iowa State University, and you might think it had something to do with the whole Cyclone-Hawkeye thing.
It didn’t. Actually, her story makes the whole Cyclone-Hawkeye thing seem trivial. She transferred because it was more convenient to attend class at UI while she underwent chemo treatments for breast cancer in Iowa City, following a double mastectomy.
She’s now starting her final semester in the Tippie College of Business, and when she graduates in December, you can understand why she’s doing so a few semesters late.
Barnhart had just begun her junior year at Iowa State in September 2010, a new transfer from Kirkwood Community College and living on her own for the first time away from home in West Branch. That is, in fact, why she picked Iowa State, because it provided that cushion from family that so many 20-year-olds want, that chance to grow into her own woman.
“I had nothing against the University of Iowa, I just didn’t want to live that close to mom and dad,” she says.
She had been in Ames for only a month or so, mostly excited but still dealing with the general anxieties of being on her own in an unfamiliar city and finding her way around a sprawling campus, when another bullet point was added to her list of things to worry about.
“Offhandedly, I felt a lump in my right breast while in the shower,” she says. She called a gynecologist who thought it was nothing, that the breast tissue of a 20-year old woman is naturally dense, and that’s probably what she felt.
“She suggested cutting back on chocolate and caffeine,” she says, and she was relieved to have one less problem to deal with.
But when she came home after fall semester, the lump was still there. She pointed it out to her own doctor during a routine physical and she, too, said it was probably nothing, but suggested an ultrasound to be sure. A tech at Mercy Hospital agreed it was probably nothing, but that it didn’t seem quite right and maybe they should look at it some more. Her mother—who also works at Mercy—brought in a surgeon to make sure. And the surgeon thought it was probably nothing, but suggested removing it so there was no doubt that it was, indeed, nothing.
And so on Jan. 11, 2011 (all these dates are burned into her brain, suddenly the most important of her life), a few days after the start of spring semester at ISU, Barnhart underwent a lumpectomy with biopsy that showed it wasn’t nothing.
“I woke up in the recovery room afterward, and I was still groggy from the anesthesia, and my mom was next to my bed,” Barnhart says. “She said ‘You have ductal carcinoma.’ Cancer. I said ‘All right’ and went back to sleep.”
From there things moved quickly. Her surgeon said that only the right breast had to be removed for now, but he wanted the left to come off within five years as a preventive measure. She decided to have both removed at once and had her double mastectomy on Feb. 14, 2011, Valentine’s Day, a date that she thinks must have some kind of meaning but she hasn’t figured out what it is yet.
Whatever the meaning, it was freighted with irony because the next few months had nothing to do with flowers and chocolate.
The experience was more miserable, painful, and traumatic than her worst worst-case scenario. Before the surgery, she knew at a philosophical level that her body would be brutalized, but she couldn’t prepare herself for what she had to endure. Like the pain, the searing, all-consuming, just-kill-me-now pain that lasted for days that no amount of mental preparation or painkillers could ease. Just lifting her arms set the mutilated muscles in her chest on fire. Lifting herself out of bed was an exercise in misery.
Or when the nurses removed her dressing post-surgery, and she saw for the first time what the scalpel had wrought—an empty, flat, dented plane, covered with blood and ooze and several feet of sutures. She felt like she wasn’t looking at herself anymore. It looked like something from a sci-fi movie.
“You look alien,” she says. “I didn’t even look like a boy because there was nothing there but scar tissue.”
Her chemo treatments began shortly afterward. She wasn’t expecting chemo before the surgery because the doctors said the lump didn’t seem to be the type of cancer that would need further treatment. But examinations of the removed tissue found that it was Stage 1 and so chemo was required.
First came 12 doses of Taxol and Herceptin together, then 13 sessions of Herceptin alone. She started losing her hair, and even though she knew it would happen, the heartbreak of watching it fall out in clumps caught her off guard. One day, while taking a shower, she broke down when she pulled out another handful.
“I was more upset about losing my long hair than about losing my boobs,” she says. She took a clipper and cut the rest off herself, exerting what control she had left. She hated being bald. Only two photos were taken of her bald, which are two photos too many as far as she’s concerned.
She was in the middle of her Taxol treatments when she decided the time had come to go back to school. She needed some form of the normal life she lived before the cancer, and worried if put off any longer, it would be one of those things she never got around to doing.
“After that semester off I was ready to go back,” she says. “I was afraid I’d forget everything I knew, or that I wouldn’t want to go back. And I wanted to graduate at the same time as my friends.”
She thought about returning to ISU, but driving from Iowa City back to Ames after chemo every week was out of the question given the physical condition she would be in after a morning of toxic chemicals injected into her veins. Nor did she want to inconvenience her family any further by asking them to ferry her back and forth because they were already doing so much to help her, which caused her to laugh at the idea that she wanted to be away from them so badly just a few months earlier.
Fortunately, another good university happened to be near home, so for the sake of convenience, Barnhart applied to the UI in April 2011, just two months after her mastectomy. Within days, she was accepted into the Tippie College of Business as a finance and marketing major.
She says the UI admissions office went out of its way to help. A counselor referred her to the Carver Scholarship program, which she applied for and received. They arranged for a private orientation session to keep her away from large groups of people carrying viruses that might beat her chemo-crimped immune system. They suggested she also visit the university’s Student Disability Services because it has resources she might find useful. She declined.
“I didn’t want to think I was disabled,” she says. “I know I was just being hard-headed, but I didn’t go.”
She took a class at Kirkwood that summer—starting just four months after her mastectomies—then started at the UI in fall 2011. Her chemo treatments were on Wednesday mornings from 8 to 11. At first she thought she could use that time to study or write papers, but one treatment disabused her of that notion. It left her woozy and sick and nauseous and exhausted and unable to do much of anything but nap.
Yet, just a few hours later, at 3:30 p.m. she was at her rhetoric class or statistical analysis class on most days. On those days she couldn’t, her instructors understood. They met with her outside of class, let her come to other sections, and postponed tests until she felt better.
Her current treatment—Tamoxifen—comes in a pill so she doesn’t have to lie in a bed for hours at a time anymore with a tube running into a port surgically implanted in her chest. But the side effects are still nasty. It blocks estrogen and so at the age of 23 she is going through menopause, complete with hot flashes and weight gain.
Tamoxifen also causes the growth of ovarian cysts that, when they flare up, cause a pain so intense it leaves her incapacitated.
“Sometimes, I’ll be in class and I’ll have this wave of pain that makes me want to lie on the floor for hours and curl up in a fetal position with a heating pad on my back,” she says.
She’s found her status as a cancer survivor is often a wall between herself and other students. She’s living in a whole different world than they are, an entirely different culture, seeing life from a place that none of them has even come close to. Other students worry about boring classes or tests they haven’t studied for. She worries about getting through class without collapsing on the floor in pain. She worries about staying alive.
“I feel a lot older than anyone else here,” she says. “Older and more tired. I’m only 23 so I’m not that much older, but I feel like I am.”
But the experience has also brought her peace, and she even found some positives in it.
“I didn’t have to shave my legs for over a year,” she says. “And during treatments, I got free snacks and a warm blanket. They had a Keurig, too.”
She also met a lot of amazing and inspirational people, and all of this taught her to be more accepting of things that don’t go right, because she’s faced the biggest possible thing that can’t go right and lived through it.
“I try not to focus on the negative things in life; it’s not worth it,” she says. “Even if it’s five minutes before a test I didn’t study for, it’s not worth stressing out. I might cry if I get an F, but I think about the good things because there’s always good things.”
She does have breasts again—her surgeons left behind implants during her mastectomy that were later inflated with chemical injections. And some things have actually changed for the better. She sees a personal trainer so she’s in better physical shape, and her diet is much improved.
“I used to be a huge junk food eater,” she says. “Most mornings I’d have a Pop Tart and 20-ounce Mountain Dew for breakfast. I can’t eat like that anymore. I have to eat better for strength, more protein, vegetables, and fruit.”
She can’t eat her favorite snack anymore, either: zebra cakes.
“The Taxol made it taste metallic and ruined it forever,” she says. “I should have known better. The moment the Taxol entered my bloodstream I could taste metal. It was awful. I can’t eat them anymore.”
The cancer seems to be gone now, her bill of health clean, the treatments slowing down as she settles in for her last semester at the UI. She can focus on her classes now, on her job search, on her future, like any student in her final semester of college.
Except that she had breast cancer and a double mastectomy, so it’s hard to really focus on anything with that in the back of your mind. She’s upfront about her cancer, speaks to other patients and survivors networks. She's going to be a runway model with other breast cancer survivors at the "Surviving in Style" fashion show on Oct. 20 to raise money that will help women pay for mammograms. She is telling her story here and now. But she wonders sometimes if maybe she’s too open.
“A lot of people tend to hide it and don’t want anyone to know, but I want to be upfront because it’s a part of who I am and they’re going to find out anyway,” she says. “But I’m worried employers will see me as a big liability and not hire me. I can show them the genetic test that came back negative, but it was also a very aggressive form of cancer so I don’t know how they’ll react.”
The doctors still don’t know how she got cancer—no other women in her family have had that type of cancer, she had no risk factors, and the genetic test found no suspect genes.
“It was just bad luck,” she says.
And that whole Cyclone-Hawkeye thing? She’s pretty neutral.
“I get texts from friends at both schools when one team beats another,” she says. “But it’s not that big of a deal to me.”