Today, December 21st, is my Thanksgiving and
Veteran’s Day.
Many of my friends have urged me to write about my cancer
experience, and I certainly have enough material to make it book-length. I will take this occasion to pen my
first public comments by way of a short and to-the-point blog post. Maybe someday that book will come, too.
On October 30, 2007 I discovered blood in my urine. After an emergency room visit, a CT
scan, and an ambulance ride to a downtown Seattle hospital, on Friday, November
2nd I underwent a procedure called a TURB (Trans-Urethral Resection
of the Bladder) to remove a tumor.
On November 5th, 2007 I was diagnosed with
advanced bladder cancer.
When the urologist had first looked at the results of the CT
scan, he told me to expect the worst.
While he was very clear that he could not give an actual diagnosis until
he removed and analyzed the tumor, he said that from the size and location of
the growth, in his experience it was most likely T3 disease, which is cancer
that has spread beyond the bladder. The 3-year survival rate for T3 bladder
cancer is 5%.
Following the TURB, the official diagnosis was not as bad as
he expected. He and a
second-opinion doctor both recommended bio-therapies and a second TURB to look
for any other tumors. The
experience gained in four years of volunteer work with the Lance Armstrong
Foundation kicked in, and I sought a third opinion as well as reading
everything I could find on and off line about bladder cancer. I soon learned that there are two opposed schools of thought: the “bladder sparing” proponents, also known as the
Sloane-Kettering or east coast school, and the “radical surgery” proponents,
known as the USC or west coast school.
Realizing
that all three opinions were solidly from the bladder sparing side, I asked my
urologist to recommend a doctor from the opposing school for a fourth
opinion. This turned out to be Dr. Sia Daneshmand at OHSU (Oregon Health and Science University) in Portland, OR,
considered among the finest bladder cancer surgeons in the world and a veteran
of the USC Norris bladder cancer program.
I met with him on Monday, November 12, 2007, and after a day of tests
and consultations he recommended immediate surgery to remove the bladder.
I will never forget his words. “This thing only exists for one
reason,” he said. “It exists only to kill you. You must play offense. If you play defense it will always win,
and you will die.”
On December 21st, 2007 I underwent a Radical
Cystoprostatectomy with Lymph Node Dissection and Orthotopic Ileal Neo-bladder Diversion, performed at OHSU by a surgical team led by Dr. Daneshmand. The surgery took almost eight hours,
and involved creating a new bladder (neo-bladder) from a one-meter section of
living small intestine (Ilium) and installing it where my original bladder had
been removed. The recovery was
hard. From a urological
standpoint, I was like an infant when I came home from the hospital six days
later.
My recovery was slow at first but gained speed quickly after the first
three weeks. I was walking a mile
a day after week four, and I took my first wobbly one-mile bike ride around the
neighborhood in week eight. Today
I am fit and healthy. Of course if
I had a choice I would never had gotten sick, but we don’t get to make that
choice, and cancer for me has been a great blessing in my life. I can honestly say that the last five
years have been the happiest of my life, by far. Over that time I have watched my youngest two children
graduate from college, and three weeks ago I held my first granddaughter. Tomorrow I will turn 60 years old. I never thought I would see any of
these things on November 5th, 2007. I feel I am a better friend, a better father, and a better
husband because of what I have experienced and what I have learned.
I have been cancer-free for five years today.
 |
| Dr. Sia Daneshmand and the author |
That explains why today is my Thanksgiving pretty easily, but what
about Veteran’s Day?
Through my work with the Lance Armstrong Foundation, dealing with
cancer in my immediate family, and of course my own cancer experience, I have
talked to a great many people who have dealt with this disease. Here are three of the most significant
things I’ve found:
There is
still stigma attached to cancer.
Yes, we’ve come a long way in our country, thanks to the Pink Ribbons,
the Foundation, and many other well-meaning organizations. In rural Africa, those afflicted with
cancer are routinely driven out of their village and left to suffer and die
alone. But major stigma still exists
even in first-world post-industrial countries like Italy, where it is taboo to
talk about cancer, and cancer in a family is considered a deep dishonor. It exists here too, if in a lesser
form. Exactly 100% of the people I’ve
spoken to who are living with and through cancer and its aftermath have told of
friends who have simply vanished permanently from their life, apparently unable
to deal with the reality of cancer so close at hand. Regrettably, I have experienced this myself.
Hold the
battle metaphors, please.
The vocabulary of those writing about cancer is dripping with
comparisons to war. Nobody dies
from cancer; they “lost their courageous battle,” etc. Almost everyone I have spoken with in
the cancer community hates this.
As one of my favorite cancer wits put it: “When someone dies in a car
accident, you never hear about how they lost their brave battle with a Subaru.”
Survivor,
or surviving? Many of the folks I have
spoken with are deeply uncomfortable with the whole “survivor”
terminology. To many, it demeans
those who die from cancer, and let’s face it, more people die from cancer than
are cured. It seems like you are
self-identifying as somehow superior, when all of us know how fortunate we are
to be among the minority group whose treatment has worked, if only for now. We’re surviving, I suppose, but does
that make us survivors? One of my
favorite writers, Mary Elizabeth Williams (Salon.com) was diagnosed with
malignant melanoma a few years back, and we have had some interesting
discussions on these issues, including the survivor thing. If we’re not survivors, then what do we call ourselves? We’ve not yet come up with the
perfect name, and I don’t think there really is one, but she likes to call us
“veterans.” I must say I like all
of the connotations of that word in relation to cancer, even though it does
suggest the old war analogies.
I’ve run this one by many cancer – ahem – veterans, and most seem more
comfortable with this one than others.
So, please join me in wishing a very happy Thanksgiving and Veteran’s
Day to, well….me.
Now where’s that corkscrew…
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