The Susan G. Komen
Story
By
Nancy Brinker, Founder, The Susan G. Komen Breast
Cancer Foundation
Growing up, Suzy and
I were just about as close as two sisters can get.
Suzy was the perfect older sister.
She was beautiful
and kind and loving, not only to me but to everyone.
She was the star of our hometown of Peoria, Illinois
- the high school homecoming queen, the college
beauty queen.
I, on the other
hand, was bigger, heavier and taller than most of my
friends and her friends. I developed my own way of
getting attention. I was a tomboy and a
mischief-maker and delighted in nothing more than
spending hours galloping around on horseback. Suzy
tried desperately to teach me about the pretty
things in life: how to fix my hair, apply makeup,
and coordinate my wardrobe. None of it seemed to
work. I was still a big, sort of clumsy girl with
two left feet. The boys didn't know I was alive,
except that I was Susan Goodman's younger sister.
Suzy came back to
Peoria when she graduated from college and got a job
modeling locally. Eventually, she married her
college sweetheart, Stan Komen.
College, for me, was
the first time I felt I belonged anywhere. I was
active in many school projects and finally began to
have confidence in myself. I felt independent and
responsible and ready to take on the world. After
graduating, I packed up my bags and moved to Dallas,
Texas, home of my father's older sister.
Although we were
separated by distance, Suzy and I spoke every day by
phone in the late afternoon.
As if it were
yesterday, I can remember the phone call I received
from Suzy one Tuesday afternoon. Her doctor had
found a lump in her breast that was not a cyst. He
recommended a biopsy. A biopsy is the surgical
removal and microscopic examination of tissue to see
if cancer cells are present. I decided to fly home
to Peoria.
When I got off the
plane, my father was waiting there alone with an
expression on his face I will never forget. He
didn't have to say a word. At the age of 33, Suzy
had breast cancer.
What happened from
this point on is still difficult for me to talk
about because I am so much more knowledgeable on the
subject today. If I had only known then what I know
now.
The truth of the
matter is that growing up in the small town of
Peoria, our family had been treated our whole lives
by one doctor. Suzy trusted him with her cancer the
same way she did with her measles. Mistake number
one.
None of us knew
enough to inquire about seeking information from a
major cancer center or from a group of physicians
associated with one in Peoria. He was our doctor.
Period.
The most difficult
concept to grasp about cancer, I think, is the fact
that when it is first detected the patient usually
feels just fine. There is rarely any pain associated
with breast cancer in its early stages. So when you
are told you've got a life-threatening disease, and
the treatment sounds more heinous than the thought
of a little lump in the breast, it is understandable
that a woman uneducated about cancer might opt for
no treatment at all.
Such was the case
with Suzy. My sister was terrified, naturally, but
adamant against having a mastectomy.
Our family doctor
called in a surgeon to review Suzy's case. It is
important, if you are to learn from our mistakes,
that I tell you a little bit about this surgeon. He
was very handsome, very suave and seemed very
self-confident. According to Suzy, this surgeon told
Suzy he could cure her. Even the most respected
cancer experts in the country (which he was
certainly not) do not talk about recovery in terms
of surviving cancer or remission. They refrain from
using the word cure because cancer can recur.
But that, of course,
is exactly what Suzy wanted to hear, and who could
blame her? Like many women, and for that matter men,
too, Suzy was of the frame of mind that the doctor
was always right.
This surgeon
suggested performing a subcutaneous mastectomy, a
procedure in which the outside of the breast is left
intact, but an incision is made and the breast
tissue is removed. He would then do an implant ten
days later. Suzy would be left with a small scar but
no more cancer. She felt it was her best option.
After Suzy's
surgery, my parents, Stan and I were all at the
hospital anxiously awaiting the results. The surgeon
walked confidently in the room and said, "You can
relax, we got it all. I believe she's cured." My
heart sank because I knew enough to know that cure
is a very difficult word to use in reference to
cancer. If it is used at all, it is more likely to
be spoken after a five-year period has passed
without a recurrence.
For the next five
months or so, Suzy felt pretty good. She was
convinced she was cured. When I suggested she secure
a second opinion just to be sure, she became very
sensitive. After all, her doctor had told her she
was fine.
But before six
months had gone by, our worst nightmare became a
reality. Suzy found another lump. This time it was
under her arm. Despite everyone's optimism her
cancer had spread.
Suzy went next to
the Mayo Clinic, where we learned that her cancer
had metastasized (spread) to her lung and under her
arm. There was a tumor the size of a quarter in the
upper part of her right lung and suspicious shadows
elsewhere. Their recommendation was 30 days of
radiation and then to "watch it."
Well, I, for one,
was tired of "watching." I wanted to see some
results.
Terror, rage,
sadness and above all, a feeling of complete and
utter helplessness invaded me. Why was this
happening to Suzy, of all people? What had she ever
done to deserve to be so sick and so frightened?
Although no one said anything aloud, we all knew my
sister was now fighting for her life. And it all
happened so quickly. She tried to keep up a brave
front and would often talk of plans for the future.
A major turning
point in Suzy's struggle for survival came from a
surprising source, Mrs. Betty Ford.
The year was 1978,
and while serving as First Lady, Mrs. Ford had
finished a successful bout with breast cancer. The
whole country was shocked and saddened with the news
of her breast cancer and mastectomy. Her bravery
touched a place inside of Suzy that none of us could
possibly understand because we hadn't gone through
it ourselves. In Betty Ford, my sister found new
strength.
"Nan," she said, "if
Mrs. Ford can admit she has breast cancer and tell
the whole world she intends to fight it, well then
so can I."
The doctors at Mayo
suggested Suzy have radiation therapy, which is a
treatment using high-energy rays to damage (burn)
cancer cells and stop them from growing. She did
have the radiation but it was not successful in
slowing her disease. The cancer was out of control,
and there wasn't a thing we could do about it. But
we had to try.
Suzy decided to seek
treatment at the M.D. Anderson Cancer Center in
Houston. When she arrived, she was a Stage IV cancer
patient. This means that the disease had spread to
other organs in her body and was still growing. It
was a very critical situation. But, for the first
time, Suzy was part of a team: Her new doctor and
his associates made Suzy a partner in every
decision. They were completely and totally honest
with her and all of us about her condition. Suzy was
not only allowed to ask questions, she was
encouraged to do so.
Suzy's doctor's
approach to the disease was an aggressive one. Thus
began the saga of intense chemotherapy. The problem
with chemotherapy is that it doesn't know the
difference between the good guys and the bad guys,
so a lot of important healthy cells are killed in
the process, including the cells of the stomach
lining and hair roots.
Chemotherapy is
often accompanied by nausea, mouth sores, hair
thinning, and sometimes total hair loss, depending
on the type used. Suzy experienced all of that and
more. Everyone given chemotherapy is warned that a
side effect is hair loss, but nothing can prepare a
woman for the shock and embarrassment of baldness.
She bore up under the strain with all the dignity
and grace she could manage, although I know she was
devastated. Little did I know that even then, my
sister was teaching me.
The stress and
tension put on a family involved in a serious
illness is unimaginable. You know you must stick
together on the crucial matters, so often the
tension released is by arguing about the little
things. My father had a terrible time. He could not
bear the sight of his precious daughter being so
ill. As a result, it was our dear mother who bore
the brunt of much of the burden.
It was especially
difficult for her because during this time lumps
kept appearing in my breasts. I had my left breast
biopsied three different times during Suzy's ordeal.
Once, she had to leave Suzy's side in Houston in
order to be with me in Dallas. All three of my
tumors were benign (noncancerous). I hated to worry
my mother, but the truth is, I was scared. Every
time I felt the slightest little abnormality, my
heart began to race. I had learned that women whose
mothers or sisters have had breast cancer have as
much as three times the usual risk of developing the
disease.
Whenever we felt as
if we couldn't go on, that the load was just too
heavy, it was Suzy's grace and humor that got us
through the day. She was able to find something to
smile about with every turn of the road, and her
infectious, warm concern was felt throughout the
hospital.
The one thing Suzy
never found humor in, however, was the aesthetic
conditions of the waiting rooms. The walls were
empty, the chairs uncomfortable, and sometimes a
patient would have to sit there waiting six or more
hours for a scheduled appointment. Suzy was
horrified and so was I. She was more concerned with
the treatment of the patients while my concern was
the treatment of her disease. I was outraged that
more hadn't been learned to help my sister.
"Nan," she said, "as
soon as I get better, let's do something about this.
You can find a way to speed up the research. I know
you can. And I want to fix up this waiting room and
make it pretty for the women who have to be here.
This isn't right."
For about fifteen
months, the Houston doctors were successful in
slowing down Suzy's breast cancer. But then, for
reasons known only to God, the disease started to
rage inside her once again.
Fully aware of her
condition, but never willing to give up or talk
about it, Suzy began a perilous and painful downhill
battle. There was more surgery and more
chemotherapy, but by now her body had built up a
resistance to the drugs. Her cancer had gotten so
out of control that it broke through the skin,
resulting in grotesque sores all over her chest. She
began to spend more time feeling awful and we spent
more time feeling helpless.
None of us knew what
to do anymore. Up until this point, we had always
spoken enthusiastically about our future together.
It was becoming more obvious with each new day that
this was our future with Suzy.
One day, during the
time when Suzy stayed in Houston, we were lying
together by the pool at the hotel. She loved to
sunbathe as often as possible, because she felt that
having color on her face was the only thing that
made her look healthy. As I watched her lying there
reading, I took note of her thin, frail body and
strained breathing. Fortunately, Suzy was into her
book and paid no attention to me. Had she looked
over, she would have seen my tears and known
immediately what I was thinking.
Our time together
was drawing to a close. In a flood of beautiful
memories, I began to look back on the sacred
relationship I shared with my sister. Frantically, I
wrote my memories down, fearing somehow I might
forget one later. I didn't realize then that
memories so special are never forgotten. I also
didn't realize that what I was writing that sunny
afternoon was my sister's eulogy.
It was time to begin
saying our good-byes. Our family had always been
totally honest with each other, and breaking that
trust at this point would hurt Suzy much more than
help her.
After my sister was
released from M.D. Anderson, I tried to come home
every other week for a visit. One particular Sunday
afternoon on the way back to the airport, Suzy spoke
to me again about doing something to help the sick
women in the hospital. This practically tore my
heart out because here she was, hardly able to
manage a whisper, and she was worrying about other
people. I couldn't bear it.
When my father
pulled up to the curb, I quickly kissed them both
good-bye and jumped out of the car. I was just about
inside when I heard a funny sound that sounded like
my name. I stopped in my tracks and turned around.
There was Suzy, standing up outside the car on
wobbly knees, wig slightly askew.
With her arms
outstretched, she said gently, "Good-bye, Nanny, I
love you." I hugged her so hard I was afraid she
might crumble. And then I ran to catch my plane.
I never saw my
sister alive again. After nine operations, three
courses of chemotherapy and radiation, she had lost
her three-year war. By the time I flew back to her
side it was too late. She was gone.
The months after
Suzy's funeral were the saddest in my life. I wanted
to stay near my parents because I knew they needed
me (the truth is, we needed each other), but I had a
son and a home that had been without any attention
for a long time. It was time to get on with it, to
pick myself up and start living again. Some things
are easier said than done.
I spent a lot of
time thinking about Suzy. There is no way to
accurately describe the void her absence left in my
life. I also spent a great deal of time questioning
my faith and wondering why such a good person was
taken from a family that needed her so desperately.
I often wonder, as many people do when they've lost
a loved one, what really happens to a soul when a
person dies. Was Suzy watching me? Did she hear me
when I called her name out loud? After much thought
I came to the conclusion that I would never know
until I died myself, but I sure didn't want to die
in order to find out. Just in case, I wanted to do
something to let her know how special she would
always be in my heart. I was haunted by our last
conversation and lay awake sometimes all night
wondering what I could do to help other women with
breast cancer.
Could one person
really make a difference? |