Returning home after a wonderful
winter holiday, my wife took what she thought was persistent
flu to our family doctor. "Karen," he told her, "I don't
like those swollen lymph glands in your neck...I think
you need to be checked for lymphoma."
When she told me, I presumed that "lymphoma" was worse
than flu. I had no idea how much worse.
The Los Angeles basin in which we live houses the largest
metropolitan area in the world, more than 1,000 square
miles of sprawl. Within it are some of the nation's best-known
cancer treatment centers. Though we were both frightened
by her lymphoma, we figured that the medical establishment
would put an orderly process in place for us, leading to
treatment.
That's exactly what happened. One referral lead to another,
which we followed without understanding - or question.
Our story begins in January 2000. A month later, a friend,
who had lost his wife to cancer about a year earlier, asked
us several pointed questions about Karen's diagnosis, the
selection of her medical team, our general understanding
of what was happening and why. I realize now that our
answers revealed very, very poor support of the doctors
who were trying to save Karen's life.
The following Monday, our widowed friend, L.J., piled
me into his car for a visit to one of the treatment centers
his wife had used. In the car, he began a gentle explanation
of what a cancer patient should know and do to optimize
the work of an oncology team. He talked about resources
such as cancer nonprofits, government agencies, patient
support groups, reference books, survivor hot lines,
and
internet sites that might help us. He explained that
some medical components to success, such as second opinions
and optional testing, were our responsibility as much
as the medical team's. Perhaps most important, he helped
me understand why I had to become an effective partner
to my cancer patient wife and what was entailed.
By then we were pulling into the parking lot of the USC
Norris Cancer Institute, where he had arranged for me
to meet several key member of the staff. This was my
first
introduction to world-class oncology, its facilities,
and its amazing scientist-physicians.
Years have passed. There have been surprising and very
fortunate turns - beyond anything we could have predicted.
It may interest you to know that, despite the outstanding
credentials of thousands of local doctors, despite the
presence of some of the world's most sophisticated cancer
research facilities, the lead oncologist on Karen's team
is 1,500 miles away. A department head at USC Norris
suggested the referral, which put Karen into the hands
of the world's
leading authority on her particular of the disease.
You may end up in a similar circumstance. This is a small
part of a complex issue that you will learn more about
as you read on.
My training as a reporter and researcher caused me to
presume that I would find a book to help Karen and I
deal with
all the complexities of cancer. Two years later, I realized
that despite mountains of literature, video, Web sites,
there was no such collected guidance. As my lady's condition
began to improve, it became clear that I needed to impart
the lessons she and I had learned, from thousands of
sources, to as many new cancer patients as possible.
I needed to
pay forward that quiet talk that L. J. had with me in
his car, those years ago, and all the tutelage that followed.
Living with Cancer is not a medical book. It is about how
normal everyday people like you and me live with cancer.
It is a listing of tips and tactics that my wife and I
have collected, offered to you from the point of view of
those who've been down this trail ahead of both you and
me, edited and reviewed by experts in the fields involved.
It is about understanding your cancer. It's also
about how to be the most successful patient possible, which
is much different. Our home life, work, personal relationships,
career, children, negotiations with health and life insurers,
paying vast sums for things that you don't have vast sums
for, possible physical handicaps, tax matters, legal assistance...all
change, too.
Cancer will strike about 1.3 million other Americans, besides
you, this year. That does not count the 1.1 million-plus cases
of skin cancers that are generally considered non-threatening,
though people die of them, too, on occasion. Close to 10
million others are now classified as "cancer survivors."
An industry and huge pieces of governmental machinery have
clanked into place to help you. The leaps in technology
are breathtaking. Estimates of the annual expenditure in
all areas of this enterprise run as high as $170 billion
a year, and climbing.
Imagine that you are walking down a peaceful street,
minding your own business. You come to a windowless building
that's
a thousand stories high, and goes on for as far down
the block as you can see. Strangers run out of the bushes.
Grab you. Push you through the door. Inside is frenetic
chaos. The size, the noise, smells, confusion, bright
lights,
armies of scurrying people, are beyond imagining. The
one thing you desperately need, and can't find , is a
receptionist...
Hi
there! Can I help you?
Sincerely,
Dave Visel |