"I hate tumors" Heather Lyn Martin, 28, dead of cervical cancer
mill...@intergate.com
http://www.janemag.com/magazine/articles/2006/03/20/HPV
"I Hate Tumors"A story about my friend Heather Lyn Martin
February 28, 1977--December 7, 2005
By Sara Lyle
We're going to kick this tumor's ass!" That's what I said to my
longtime pal Heather outside a pub the night she told me she had
cervical cancer. It was last May, and she didn't look sick at all.
Sure, the diagnosis was terrifying, but Heather was only 28, and
cervical cancer usually spreads very slowly. We figured she'd beat it,
no problem. "Hells yeah!" she hollered, waving at me as she hopped into
a cab. A few months later, when Heather's tumor wasn't shrinking, we
decided to write this story together, because she wanted other women in
their 20s to know about the human papillomavirus (HPV, the most common
sexually transmitted virus in the world), which can cause cervical
cancer. The timing was right, because a new HPV vaccine, which could
prevent about 70 percent of cervical cancer cases, had just gone before
the FDA and could get approved in early 2006. But Heather never got the
chance to start writing--on Dec. 7, she passed away.
My emotions are still pretty raw. It's scary to try to make sense of a
death that doesn't make sense. I need to tell Heather's story, though,
because I know she didn't want you guys to go through what she went
through. So bear with me. I'm going to try to get this right.
The afternoon of May 14, Heather's feet were in the metal stirrups of a
Planned Parenthood exam table, when the doctor started to freak out,
saying, "Oh my God, oh my God." Heather had been having pain and
bleeding during sex. And she'd been getting more action than normal,
because her boyfriend, Colin, then 21, had moved in with her that fall.
She'd actually been spotting for months, but blew it off because she'd
heard a lot of women bleed a bit when they start the pill, as she had
the previous December. Plus, that December's Pap test--the standard
kind in which a gynecologist smears cells from the cervix onto a slide
and sends it to a lab--had come back normal.
Now: "Oh my God."
"Um, you don't want to hear that sort of thing in this position," said
Heather, craning her neck to view the woman's face. "What's wrong?"
"I can't see your cervix--it's obscured by some mass," the woman
replied. "You need to go to the ER right away."
Stunned, Heather headed to Beth Israel Medical Center, not far from
Slane Public House, the Irish pub where she was to work that night. A
resident examined her, then a bunch of med students crowded around her
spread thighs. "It was like I was some kind of freak," she told me
later. I guess it's not every day in the U.S. that a doctor stares
right at a 3-inch cancerous tumor on a young woman's cervix.
See, full-blown cervical cancer isn't that common in this country and
usually isn't fatal (80 percent of deaths are in developing nations,
where routine Pap tests aren't available). The malignant cells can take
years to spread beyond the first layer of the cervix. But according to
Dr. Diane Solomon of the National Cancer Institute, the regular Pap and
the newer, liquid-based test still miss precancerous cells 15 percent
to 30 percent of the time, which is why you should get a checkup every
year. If you do have precancerous cells, typically you'll find out
after an abnormal Pap result and subsequent biopsy. The layer of cells
will then be lasered or frozen away, and you go on with your life. End
of story.
Maybe Heather's Pap smear missed the cancer. Or maybe the results were
misread. Either way, the tumor seemed like the least of her worries by
the time she left the ER that night. Her sister, Donna, who was 22 and
living in Florida, had left her an urgent message. Heather soon found
out the worst: Their dad, who'd been battling pneumonia, had died
(their mom died from liver disease in 2001). The next day Heather was
on a flight to North Carolina for the funeral.
"It was all so surreal," Heather later said.
Heather and I met as high school freshmen in Fort Pierce, Fla. And soon
afterward, we decided to tell people we were sisters--an easy con, with
our matching freckles and blond sun streaks. She was one of my goofiest
friends: During soccer, Heather loved bellowing, "Somos mujeres con
huevos grandísimos!" ("We are women with huge balls"). She also had
one of the biggest hearts. When our pal Mindy needed to move out of her
house senior year, Heather got her own mom to let Mindy move in, sort
of like how the Cohens took in Ryan on The O.C., minus the pool house
(Heather's family didn't have money). But the Chinese symbol for
perseverance tattooed on the back of Heather's neck said it all. At 25,
she up and moved to New York with no job and little cash. And until the
cancer thing, she was just fine. She was my antihero.
So it pained me to hear about the meeting she had with a brusque
oncologist right before taking off for her dad's service in Carolina.
Still, the doctor accepted Medicaid--which Heather would have to apply
for, since she, like nearly 16 percent of Americans, was uninsured (19-
to 34-year-olds account for half the rise in uninsured adults since
2000). Heather said their conversation went something like this:
Doctor: "Don't you work? Why don't you have insurance?"
Heather: "Yes, I've got two jobs--they just don't offer benefits."
Doctor: "Well, you need to start treatment tomorrow." Heather: "I
can't, my dad died yesterday. I'm going to his funeral."
Doctor: "Sorry, there's no time for that."
"She looked at me like I was some ignorant little girl," Heather later
vented. Plus, Heather was frustrated--it would take two weeks for her
Medicaid to kick in anyway, and she couldn't start treatment before
that.
But that did give her enough time to research egg retrieval, which the
doctor had warned against. Heather, both nurturing and stubborn, had
her heart set on holding her own baby someday. So when she realized
she'd probably lose the ability to have kids--the radiation would "fry
her eggs," she said, and cause her to go through early menopause--she
panicked. She went off on her sister when Donna suggested she "just get
a hysterectomy" to remove the tumor. "Don't even say that!" Heather
yelled. She later asked Donna if she would have her baby for her, if
doctors could freeze an embryo formed from one of Heather's eggs and
Colin's sperm. Donna recalls, "I was like, 'Of course!'" But after more
than a month of taking daily hormone injections for the egg harvesting,
Heather developed painful cysts on both ovaries and began to have
super-heavy, clotlike bleeding. The doctor stopped the treatments
before any eggs were saved. Heather was devastated.
She finally started chemotherapy and radiation in August. Five days a
week, she'd go to Roosevelt Hospital, where she would lie under a
machine, which blasted energy at the tumor for 15 minutes. "My insides
feel sunburned," Heather said after a while. Fridays meant chemo, with
her sitting in a chair as chemicals dripped into her arm from an IV. On
weekends, Heather tried to ride out the nausea and diarrhea. Before it
was over, she'd have to have two blood transfusions, because she was
going through 10 maxi pads a day. But that was supposed to be a good
sign: A doctor told her it probably meant the tumor was breaking down.
Midway through the treatments, Glenda--her good friend and the owner of
Slane--threw a fund-raiser at the bar so Heather wouldn't have to worry
about cash until she could get back to work. The event raked in more
than $20,000. Everyone wore orange HEATHER'S RALLY wristbands and the
beer flowed. The main thing reminding me that my chatty friend had
cancer was the fact that she was drinking plain old water with lemon.
She was still full of hope. We all were.
And then it started to slip out of our grasp--slowly at first, then so
fast it took our breath away. Two weeks after Heather's final
treatment, she checked in to Roosevelt to have radioactive material
implanted into her cervix to obliterate the rest of the tumor. On the
morning of Oct. 3, she was put under, only to wake up a few hours later
and learn that the tumor hadn't shrunk enough to even try the implant."
"Heather, sobbing, called Glenda to pick her up. The next day, she met
with her doctor again. It was time to reconsider the dreaded
hysterectomy. "I just want it to be over, to be better," said Heather,
who later joked, "We'll have a funeral for my uterus!" But scans soon
revealed that the cancer had spread to Heather's lungs and tailbone. It
was too late.
Heather called me in October to say she planned to confront someone she
thought had genital warts from HPV and might have infected her. "I want
him to get tested," she said, "so he won't do this to anyone else." But
there is no reliable test for guys. And she could have gotten the virus
from anyone she slept with, because HPV is spread skin to skin, and the
strains that can cause cancer don't show up as warts. Even condoms
don't help entirely. In fact, 75 percent of us will contract one of the
high-risk strains in our lifetimes, the NCI's Dr. Solomon says, but
most fight it off without treatment within a few years. (Which is why
the test for women, the HPV DNA, is normally offered only after age
30.) But Heather was pissed, so it's understandable that she'd want to
pin the blame on someone. A few nights later, I met Heather at a Thai
restaurant. "Are you warm enough?" I asked, giving her a once-over. Her
thin coat was open over a camisole. It was in the 40s outside, at most.
That's when she told me she had nonstop hot flashes--"just some of the
fun of menopause!"
While she picked at a salad, I showed her printouts from
Sloan-Kettering Cancer Center's Web site--supposedly the best place
around, with all sorts of cutting-edge approaches--and look! They
accepted Medicaid. Heather promised she'd call the center first thing
in the morning, then I'd take her to get a second opinion.
But Heather didn't call me. And she didn't pick up her phone for the
next four days. Glenda reached me Thursday afternoon. "Heather had to
go to the ER for her pain," she said. "I saw that you called a bunch of
times, so I wanted to let you know what was going on."
Heather was hooked up to a morphine drip--in and out of lucidity. After
more CT scans and MRIs, the doctors had set an expiration date on my
friend's life: She had three to five months to live. Holy shit.
By the time I got to the hospital that night, other friends, as well as
Donna (who moved to New York the following week), were there. I held
Heather's hand. "It's really hard to accept," she said, her wide
blue-gray eyes searching mine. "I'm not ready to go." Then she told me
she was going to ask Colin to marry her, so she wouldn't "die alone."
"But you won't die alone. We're all here for you." "Thanks, lovey. You
know what I mean. And I want you to sing at the wedding. I've always
loved your voice," she said, then closed her eyes. The wedding never
happened. Colin later said that Heather hadn't leveled with him about
how little time she had left. If he'd known, he said, he would have
married her "without a second thought."
By Thanksgiving Day, her deterioration was hard to ignore, though. I
was excited to see her, because she'd texted me to say that Glenda, the
queen of connections, had gotten Bono to visit her after a show ("the
best seven minutes of my life," Heather reported). But when I walked
into where she was staying, I was caught off guard. She looked way too
much like my grandfather in his last weeks with stomach cancer. The
tumor was secreting a hormone that made Heather retain fluid, and her
lymph nodes were swollen, so she had the bloated belly and legs of a
seven-months-pregnant woman. Her collarbones jutted out and her skin
had a yellowish-gray tint. Lesions on her liver were keeping it from
cleansing her blood properly. But none of the doctors had really
connected the dots for Heather yet--most assumed she knew what was
going on and was just in denial.
Heather was taken to Roosevelt the next day because she couldn't eat or
breathe well. Finally, a young doctor with wire glasses explained that
the tumor was responsible for all of her symptoms: It was compressing
her airways and causing her bloating, as well as creating the pain in
her hip, back and leg bones. After he left, Heather started crying.
I sat to her right, and her close friend Jen stood on her left. "I
don't want to give up," Heather said. All three of us were crying. "I
just want to be able to walk around again, dance." She couldn't even
shuffle to the bathroom without help. "I want to be able to party with
you guys." "We'll throw you a party as soon as you get out of here,"
Jen said. "That sounds good," Heather replied.
And from there the nights and days started to blur. Nobody wanted
Heather to be alone, so we tried to make sure someone was with her at
all times. But she just got worse. On the day the Rockefeller Center
Christmas tree was to be lit, Heather told everyone that after she was
gone, she didn't want anyone moping around. Nope, Heather wanted us to
throw a big ol' bash and drink Pabst Blue Ribbon--her go-to when money
was tight.
After just one painful night out of the hospital, Heather wrote a note
to the nurse who came to the apartment to check on her the next
morning: "I'm frightened. Please help." And on Dec. 4, an ambulance
took her to Beth Israel's 24-hour hospice facility for terminally ill
patients.
Heather was partly coherent for one more day. The last conversation we
had, I was perched on her bed. Her twiglike fingers kneaded my neck as
we looked into each other's eyes--mine swimming in tears.
"Don't worry," she said. "It all catches up with you at once."
I laughed--it was so Heather to comfort someone else at a time like
this. Then I told her how much joy she'd brought me, and that she
didn't have to worry about Donna, because we'd take care of her. That I
loved her more than I could ever express, and finally, I told her it
was okay to go. She didn't have to fight anymore. She was suffering too
much.
Heather died around noon three days later. Everyone--me, her sister,
Glenda, Jen, Colin, friends and family from all over, even her
18-year-old cat--was in the room as she took her last breath. I simply
stroked her right foot with the silver ring on the second toe and
watched. Heather looked like a sweet girl in a beautiful dream.
Her service was that Friday. We plastered the funeral home with
pictures of her and read poems she'd written. A friend played three
acoustic songs, including "Love Is Stronger Than Death" by the The. And
that night, we toasted her with PBRs and danced to U2 at Slane, wearing
I HATE TUMORS shirts. Heather would have loved it.
Here's the thing: When I mentioned this story idea to Heather, I really
thought we might find a way to cure her. She'd tell me her story, I'd
do the research, and we'd figure out where things had gone
wrong--whether it was with a guy who might have infected her, a lab
that misdiagnosed her, Heather going ahead with egg retrieval or a
health care system that let her slip through the cracks. But that's not
the way it went down. For my part, I know now that I'm never going to
skip an annual Pap test, and that I plan to get the HPV vaccine if I'm
eligible. I think every woman should do the same. Other than that,
though, I don't know what to say. Nothing about it was fair. Heather
had so much more to do on this planet. I wish you could have known
her. Hopefully you do a little now.
Kathi
>http://www.janemag.com/magazine/articles/2006/03/20/HPV
Wow.