Silent killer? Not in my case. My cancer spoke up loud and clear,
and so did I, but my doctor didn't listen.
It was the summer of 2000. I had just turned 30 and had just
started working for the Ritz-Carlton as a market research analyst. One night
I had a sharp pelvic pain while passing a small gas bubble. I'm not a hypochondriac
or an alarmist, but this was such an odd thing that I went to my gynecologist,
who ordered ultrasounds. One ovarian cyst was found.
Then I began to have pelvic pains, so I made another appointment.
In July I had more ultrasounds. This was my idea, so my gynecologist could compare
the two sets.
I was told the cyst had gotten slightly smaller. Well, the
cyst hadn't gotten smaller -- it was another cyst on the other ovary, and the
first one was gone! Apparently no one noticed. I didn't see the report. I was
told I didn't have cancer, but no one ran a CA-125 (cancer antigen 125, a tumor
marker). In January, I called back because the symptoms never went away; they
got worse. I couldn't get access to my doctor by phone. When I demanded an appointment,
the soonest they would give me was six weeks later.
I insisted on getting a third set of films, which were read
by what I consider a grossly negligent radiologist. His report said it was possible
I had pelvic inflammatory disease or endometriosis (which occurs when the uterine
lining grows outside the uterus). The ultrasounds indicated I had fluid in my
abdomen -- a red flag for ovarian cancer. He noted this in the report, but neither
he nor my gynecologist put two and two together.
At the appointment I asked my doctor, "Do you want to know
what my symptoms are?" I said they were mostly digestive and went on to explain
them -- and the doctor said dismissively, "Well, have you seen someone for the
digestive problem?"
I had done research and I knew I had textbook ovarian cancer
symptoms. I knew that gynecologic problems can cause gastrointestinal symptoms
-- and I've never been to medical school.
My doctor said I might have endometriosis. She suggested hormone
therapy or a laparoscopy (when a physician inserts a telescope-like instrument
into the abdomen to see the reproductive organs). I said, "What would you do?"
She said she thought a laparoscopy was invasive, so she wouldn't do that.
I left there and returned to work, where a friend gave me her
gynecologist's number. I got an appointment for two days later.
At my appointment the physician's assistant opened my file
-- which I had demanded from the other doctor -- and said, "You need surgery."
She left the room, I later found out, to go get the doctor -- and tell her,
"I've got somebody here I think has cancer."
My new doctor said I needed surgery right away to determine
if I had cancer or endometriosis. If the endometriosis was very bad, a hysterectomy
might be required. If it was cancer, a hysterectomy and possibly a colostomy
might be called for.
The doctor didn't trust my radiology reports. So before the
surgery I went for more radiology work although we had 10-day-old ultrasounds.
The second radiologist did a trans-pelvic and a trans-abdominal, and all the
signs were there. He looked at the films from 10 days earlier and saw the same
signs -- things that would lead a physician to suspect ovarian cancer.
I was praying it was endometriosis. I had surgery April 4th.
In addition to performing a complete hysterectomy and appendectomy, the surgeon
had to remove both ovaries, the layer of tissue called the omentum, a large,
flat tumor and many small nodules of Ovarian Serous Carcinoma. I had Stage III-C
ovarian cancer.
I woke up in terrible pain. I had asked my mom to tell me the
results as soon as I woke up. She said it was cancer. I said, "Cancer."
Ovarian cancer presents a specific danger
to women for several reasons. For one, there is no early screening test for ovarian
cancer; Pap smears don't detect it. So women with ovarian cancer usually don't
see a doctor until they have symptoms, and by then the cancer is usually advanced.
Also, symptoms of ovarian cancer are vague and often mimic gastrological or digestive
problems. Many women don't think to go to a gynecologist for such symptoms. In
some cases, as in Buckner's, a gynecologist will recommend consulting another
specialist.
Ovarian cancer is defined in four "stages,"
with the first three divided into subgroups A, B and C, depending on the cancer's
progress.
In Stage I, the cancer is limited to one or
both ovaries. In Stage II, it has spread (metastasized) to other reproductive
organs. When caught in these stages, women have about a 90 to 95 percent five-year
survival rate, according to OCNA.
In Stage III, the cancer has spread to the
abdominal lining or lymph nodes. Stage IV cancer has metastasized to the lungs,
liver or sites outside the abdomen. When diagnosed in these stages, the chance
of five-year survival is only about 25 percent.
In the United States, 75 percent of ovarian
cancer cases are detected in Stages III and IV.
I was scared for my life, so losing reproductive
organs wasn't the biggest issue. I've always believed in adoption and had planned
to adopt regardless of whether I had children biologically. The hysterectomy
was still a very big deal, on the vanity level alone. I'd always had a flat,
perfect tummy. Now I've got this big scar that loops around my belly button
and makes my abdomen lumpy.
But I was willing to give in to all that,
and I knew that I'd have to have chemotherapy and lose my long hair. As important
as all those things had been to me at one time, I immediately had an appropriate
sense of perspective. My horror was full-blown at the prospect of losing my
life.
Three weeks after surgery I rushed into chemo.
I began the standard regimen of carboplatin and Taxol. At my first treatment,
I cried at how many people came into the infusion room for chemotherapy. It's
a terrible club to belong to, but there are some really great people in it.
The hard part is that when you make friends in the chemo office, they die on
you sometimes.
I lost my hair 10 days after that treatment.
I had waist-length, curly, blonde hair and it started falling out rapidly. It
hurt to touch my scalp. Every hair you'd touch would fall out, and these hairs
were very long.
My mother cut it short for me. Both of us
cried through the whole thing. She helped me tie a bandanna on my head and we
walked outside my apartment. It was a very hard thing to do -- to step outdoors
with that bandanna on my head. I was very proud of myself.
The treatments produced the usual side effects.
I had some nausea, boneaches, bad acne. I had anemia, and the low white blood
cells made infection a constant danger. People on chemotherapy can't even eat
raw produce because the microbes found in anything uncooked can be fatal. The
common cold can kill you.
After six treatments we switched from Taxol
to Taxotere because I had signs of neuropathy -- nerve damage that causes numbness
and tingling in fingers and toes.
I had one numb toe for a long time, but it's
better. Neuropathy is irreversible and can become so severe you can't walk.
That may come, and I know people who can only wear tennis shoes -- forever.
On the Taxotere, my fingernails and my toenails came close to falling off.
The standard therapy was six treatments, and
my gynecological oncologist thought nine was appropriate. I wanted to continue
treatment after that. I did not like my odds; Stage III-C ovarian cancer patients
have a 40 percent chance of five-year survival. I wanted to kill every bit of
it as long as I could stand treatment.
My mother was with me every minute through
three treatments. Then she had a seizure.
The CAT scan and MRI showed a brain mass.
A biopsy was done and it was a glioblastoma (a fast-acting, aggressive primary
brain tumor) -- the worst possible thing. Six to 12 months was the prognosis.
My mother died on April 10, 2002.
People were asked, in lieu of flowers, to
donate to the Ovarian Cancer Research Fund. My dad and I knew she would want
all resources to go toward fighting my battle.
My mom and I were so close; she was my best
friend. Her ability to communicate began to diminish not far into her illness.
When she died, nothing needed to be said. I have that peace.
I see it all the time -- trivial things that
people allow themselves to be made miserable over. One person told me when her
newspaper is stolen each morning it ruins her day. I felt like saying, "You
want to trade?"
At my own insistence I endeavored to finish
a year of chemotherapy. Before my last treatment, my platelets were too low
and I couldn't get the chemo.
So I stopped treatment for two months and
I was frightened the cancer would return. But at the same time, death didn't
hold the same fear for me, since my mother had preceded me.
My next round of tests showed the cancer was
back.
I sought advice from six physicians, none
of whom agreed on what to do. These were all good physicians; it's just that
with ovarian cancer, we're in the Dark Ages. I decided to attack it with surgery
and chemo.
Journal entry: July 21, 2001
The prospect of this surgery is so frightening.
We know it may not help at all but wind up so I've got a colostomy and/or urinary
diversion device. And, I'm told, I've got -- well, here's how one doctor put
it:
100 women are in your shoes with recurrent
ovarian cancer.
50 do nothing.
50 are very aggressive -- surgery/chemo.
48 of the second 50 have exactly the same
outcome as the first 50. Only two respond exceptionally well.
You have to hope to be one of the two.
I had a second surgery in July. Three weeks
later, I embarked on the next round of treatments. I was given gemcitabine and
a choice between carboplatin and cisplatin. I chose the stronger one, cisplatin.
It was pure hell. I had diarrhea, then for
30 hours straight I vomited every five to 10 minutes, long after there was nothing
left to vomit. I prayed for death. When that receded, the antinausea medicines
I took had blocked my digestive system, so I suffered terrible cramps.
I wasn't sure I could endure another treatment,
but my CA-125 reflected a slight drop, so I did it again. I girded myself more
heavily with antinausea medicines, and wasn't as sick. I experienced the same
horrible cramping, though.
Then my CA-125 dropped dramatically. I went
for a third round. This time I took some medications to ward off the gastrointestinal
cramping. They worked, and it's been smooth sailing since then. The days following
the infusion are certainly not fun, but I am not experiencing torment.
Right now it looks like I may be one of those
two lucky ones. We'll see.
A range of symptoms involving
various body functions can signal ovarian cancer. They are often
so vague that some women ignore them for weeks or months. Such
symptoms, according to the National Ovarian Cancer Coalition,
include: unexplained change in bowel and/or bladder habits such
as constipation, urinary frequency, and/or incontinence; gastrointestinal
upset such as gas, indigestion, and/or nausea; unexplained weight
loss or weight gain; pelvic and/or abdominal pain or discomfort;
pelvic and/or abdominal bloating or swelling; a constant feeling
of fullness; ongoing fatigue; abnormal or postmenopausal bleeding;
and pain during intercourse.
Ovarian cancer experts recommend that women
with any of these symptoms see a gynecologist within two to three
weeks of their onset and order a full workup: a CA-125 blood test,
trans-pelvic and trans-abdominal ultrasounds and a pelvic/rectal
exam. If any of these tests indicate abnormalities, a visit to
a gynecological oncologist is recommended to ask for advanced-imaging
tests such as CAT scans, MRIs or PET scans. "Women need to know
they are their own best advocate and not to be dismissed by their
doctors," says NOCC's Cathy Hylinski.
I had attended church sporadically in recent
years. Before my first surgery, I had a very rapid return to the church. When
I couldn't have been more stressed and terrified, prayer was my only solace.
I have not been mad at God at any time. I
asked God to spare my mother, and that didn't happen. I asked God to make me
not have cancer, and that didn't happen. But these things are happening for
a reason. My purpose here may be to strike a blow to this disease.
After my first surgery I asked my doctor,
"Am I going to die?" -- expecting her to say something comforting. She couldn't
answer. For a couple of weeks I was angry at my physicians who wouldn't tell
me I was going to beat this.
I find it is a very common mindset -- now,
people are angry at me. When they say to me, "It's going to be OK, right?" I
can't tell them it's going to be OK. From the beginning, the odds have been
overwhelmingly that I will die. The odds are that I will be dead before five
years are up. I'm doing everything I can to beat this, but the Pollyanna answer
would be untruthful. And no one wants to accept the bad news or the uncertain
prognosis.
I would love to survive this disease. Whether
I do for six months or to a ripe old age, I'll be grateful for whatever I get.
This life is a gift from God. But there are worse things than dying, and death
is not the end.
Everything has the potential to remind me
of my mortality -- whether it's organizing my filing cabinets and wondering
if I'm wasting my time or buying a bottle of shampoo and wondering if I will
be able to use it all up.
I've made all kinds of arrangements. I've
made notes about what hymns and what Bible verses I like. I volunteered on the
Relay for Life committee -- I gave them the names of people I thought would
be helpful next year, in case I'm not here.
One of my biggest concerns was who would get
custody of my pets. My dad is going to care for them. I've thought about who
could get use or enjoyment out of my possessions and have written down who should
receive them.
Actually, one of the disturbing things I've
thought about is who would treasure the things that my mom and I treasured --
some little tchotchke that had some crazy funny story attached to it, and no
one will ever know. They'd just go to Goodwill.
Another problem with ovarian
cancer is that doctors -- including gynecologists -- are often
unaware of its symptoms.
Buckner is not the first woman whose doctors
didn't catch her ovarian cancer in its initial stages. "That happens
quite a bit," says Denise Saladino of LaPlace, president of the
Louisiana division of the National Ovarian Cancer Coalition (NOCC).
"Women often tend to get brushed off or dismissed. That seems
to be a recurring story when I talk to women about when they were
first diagnosed."
In 2000, gynecologic oncologist
Dr. Barbara Goff, of the University of Washington School of Medicine,
published a survey of 1,725 ovarian cancer patients. About a third
of them had seen three or more health care providers before they
were diagnosed. The most common misdiagnoses were stress, depression,
gastritis and irritable bowel syndrome. Ninety-five percent reported
symptoms prior to their diagnosis, but many were not tested for
ovarian cancer during their first doctor's visit. Twenty-six percent
were not diagnosed with ovarian cancer until more than six months
after they first saw a physician complaining of symptoms. Eleven
percent were diagnosed more than one year later.
Many women, like Buckner, are thought to be
"too young" to have ovarian cancer, since the highest instances
occur in post-menopausal women. Goff's survey showed younger women
took longer to be diagnosed.
Ovarian cancer is, today, where breast cancer
was 40 years ago.
It's wonderful that all this awareness of
breast cancer has evolved over the years. That's a horrible disease, too, and
it strikes one in nine women. But many forms of breast cancer are curable; many
women are able to triumph over breast cancer. My mother did. But ovarian --
the odds are not so good. There needs to be more fundraising, more awareness
of ovarian cancer.
We have practically a walk a weekend for breast
cancer, and ovarian -- we're dying left and right. You see pink ribbons everywhere.
I just found out the ribbon color for ovarian is teal. I didn't find out until
Sept. 15 that September was Ovarian Cancer Awareness Month.
The best-case scenario is -- and this is very
far-fetched -- that I keep myself alive for long enough and something dramatic
occurs in terms of cure. However, there is nothing promising on the horizon.
Nothing.
I have not given up hope. Cisplatin, the chemical
I'm on, was discovered by accident. So all the money going to breast cancer
research -- there can be sometimes a connection between breast and ovarian cancer,
and maybe those people will stumble on a cure for my disease.
There's no way to ever know you are cancer-free.
With ovarian cancer, the only way anyone can say whether you definitely have
the cancer or not is to say "Yes, you do" while holding a chunk of it on a scalpel.
That is the only way.
A family history of breast,
ovarian or colon cancer puts women at heightened risk for ovarian
cancer. A genetic mutation linked to breast and ovarian cancer
is found on the BRCA1 and BRCA2 genes; women can undergo genetic
testing to determine whether they have this mutation. Other risk
factors include use of fertility drugs, uninterrupted fertility,
increasing age (especially over 50) and being of Eastern European
Jewish descent.
Removal of the ovaries greatly decreases the
risk of ovarian cancer, though peritoneal cancer (of the tissue
surrounding the ovaries) can occur without the ovaries present.
Women at risk could, along with an annual
pelvic/rectal exam, elect to have a trans-vaginal ultrasound every
six months or every year, or to alternate an ultrasound with a
CA-125 blood test every six months. This type of screening is
questionable at best, NOCA says, because the tests are expensive
and not necessarily effective. The unfortunate truth is that there
is simply no reliable early-detection method for ovarian cancer.
Journal entry: April 2, '02
I noticed something under my toenails, and
I found they were oozing. Maybe I'm going to lose them. "What next?" I keep
asking.
As I told the dentist today, when she tried
(unsuccessfully) to get me on a prescription rinse that would stain my teeth
brown, I can't take any more assaults on my looks:
1) no hair
2) no eyelashes
3) no eyebrows
4) 15 lbs. heavier
5) fingernails falling off
6) skin not quite normal (no color) and acne
sometimes
7) figure permanently altered
8) disfiguring scars, fleshy appearance of
abdomen
 |
|
Christie Buckner and her mother, the late Susan Buckner, enjoy a parade during Carnival of 2000, a few weeks before Christie began noticing symptoms of cancer.
|
Courtesy of Christie Buckner
|
9) neuropathy -- and now, toenails -- making
heels/sandals questionable.
And, on top of all that, they expect me to
walk around with:
10) brown teeth -- That's just not going to
happen!
And how about wigs? They're expensive and
they look like crap. You have three choices: Grandma, Country-Western Singer,
or Streetwalker. Mine are from the Streetwalker collection.
When you lose your eyelashes, you look very
weird. With false eyelashes I look like a sad clown. I could look like a freak
or a sad clown. Take my pick.
Look what this has taken away from me. I had
energy. I was athletic. I was sexy. I was fun. All those things that you take
for granted, you lose so many of those -- from your eyelashes to your ability
to wear nail polish. It's important to bring these things up. That's huge. It's
part of who you are.
I was lucky in that I had a loving relationship
with my partner, who was not bothered by physical changes. He made me feel as
beautiful as before.
It drives me crazy when people say, "A positive
attitude is the most important thing!" Treatment is what elicits a biological
response to cancer, not attitude. My mother didn't die because she had a bad
attitude; she died because she had a fatal disease. If your attitude makes you
stick it out through another round of chemotherapy, or other behaviors that
are conducive to success -- great. A good attitude helps your quality of life.
But if you ask me if I want to do a cheer or to get an infusion of cisplatin,
give me cisplatin.
People with cancer should not fall prey to
guilt that their lifestyle caused it, or if they have a less-than-positive attitude
their tumor will grow faster. People sometimes threaten you with your own disease
if you're not thinking the way they're most comfortable for you to be thinking.
There are so many misconceptions about cancer
-- people who think we get to drink tea and listen to soothing music all day.
In addition to the endless doctors' appointments, lab work and treatments, we
still have to call Entergy and fight when our bill is messed up; we still have
to care for sick relatives or children, go vote, everything. You still have
to take the trash out. Nothing stops.
Everybody wants to tell me I can cure myself
with nutrition or supplements. I don't want to hear it. I have investigated
everything. If there was a nutritional cure for cancer, my chemotherapy office
would not be packed.
I cringe every time anyone calls me a "survivor."
I'm doing everything I can to survive; I'm praying, I am doing everything from
the attitude on down, but it is presumptuous to say I will survive this. When
we thought I was in remission for two months, my biggest fear was, what if it
comes back? Now I have much less anxiety because there is no suspense anymore.
I'm doing well, though I have no idea how long this will last, and I've learned
to live in the present.
I had always planned to adopt a child, and
now I'm aware that it may not happen. But I'm still reaching for the same goals.
Right now I've got things to deal with, so I can't go back to school, and I
can't adopt until it looks like I'm having a lasting remission.
But do you know what I did today? At my church
rummage sale I found The Sesame Street Treasury. It's 15 children's books,
and I bought it for a dollar a book.
So I still plan.
"Women feel that when they go into the
gynecologist's office that all gynecological cancers are going to be looked for,"
says NOCC's Cathy Hylinski. "That's not the case."
Annual tests for ovarian cancer may one day
become available. Earlier this month, a Maryland biotechnology company, Correlogic
Systems Inc., announced that in April it plans to begin clinical trials on a
protein-pattern blood test designed to detect ovarian cancer in its earliest
stages. Should the trials show success, the tests would have to be approved
by the federal Food and Drug Administration.
"How far away [these tests are] depends on
who you talk to," says Saladino, of NOCA-Louisiana. "I've heard from two to
five years."
There are a few measures that women can take
to try and prevent ovarian cancer. Use of oral contraceptives can decrease a
woman's risk; so can breastfeeding, pregnancy and tubal ligation. Research has
also shown a possible connection to ovarian cancer from using talcum powder
in the genital area, frequent douching, and eating a high-fat diet.
Gynecologists need to screen for ovarian cancer.
When they are careless with women's lives, this is what happens. A 32-year-old
woman with all the potential in the world, terminally ill. If this had been
caught in Stage I it might be a different story, and I'm convinced I had symptoms
at Stage I.
It's important for women to go to the doctor
if they have symptoms. But that's not enough. You have to harass your doctor
into taking you seriously and screening for ovarian cancer. It strikes 1 in
55, tell them, not 1 in 55,000. I've learned you cannot trust your doctor, even
one with an excellent reputation, as mine had.
As intelligent and educated about my health
as I was, it's too late. I'm terminally ill. If I can fall through the cracks,
anybody can.
Some positive things have come out of this.
One of the biggest has been discovering how much good there is in people. People
who went from having a small role in my life to being energetic, eager caretakers.
The friends of my mother who assumed a maternal role.
I'm extremely fortunate to have been supported
by the Ritz-Carlton and especially my wonderful co-workers. I went on medical
leave, but I've returned and I'm able to work from home. I'm not a market research
analyst anymore, but there are things I can contribute, and the Ritz-Carlton
has given me an opportunity to do so.
I've also received tremendous support from
my apartment's management company and from my neighbors. My church has been
so great. I don't know how people who don't have such an amazing support network
get through it.
I received a lot financial assistance. I had
savings earmarked for other things, and I went through that. I received a great
deal of help, and none of it from millionaires: from hard-working, good people
-- my friends and family and boyfriend.
My best friends from high school flew to see
me. One cleaned my apartment and did a lot of accounting work for me. One friend
cared for me after chemo, trying to come up with things I could eat. Another
mailed me her journal, full of wonderful, inspirational things she had compiled.
I am so lucky.
