An Open Letter ...

I've written about the use of battle metaphors for cancer in a previous post. Here are some more thoughts on the subject courtesy of Aria Jones. Her post is called "An Open Letter to People Who Use the 'Battle' metaphor for Other People Who Have the Distinct Displeasure of Cancer"  Read it here.

An Excerpt from "Back To Life: A Bladder Cancer Journey" by Frank Sadowski

Here is a short excerpt from my new book. It is now available at Amazon.com in both Kindle e-book and paperback formats. Go to Back To Life to view and purchase!

Part way through chapter eight......

      Recovering a bit, I then asked him about the surgery. I said I assumed that I would have a hole in my side and an external bag for urine. He said that was certainly an option and a possibility, but that there were other options, such as a neobladder. I had never heard of this, and he began to explain it to me in some fairly technical medical terms. It was at this moment that a nurse came in and told him he was needed in another exam room for a few moments. He excused himself, and I sat by myself in shock and terror. Even though I had known he was from the surgery side, I didn’t think this was how this day was going to go. Dr. Reid knocked and entered. He told me he understood that Dr. Daneshmand was beginning to explain the neobladder option. I said that was true but I really didn’t understand it yet. He sat across from me on the stool where Dr. Daneshmand had been sitting and put his chin in his hands, elbows on his knees.

      “Here’s what we do,” he said. “We cut you from stem to stern, and take out your bladder, prostate, seminal vesicles, and thirty to fifty abdominal lymph nodes. Then we cut out a one-meter section of your small intestine, the ileum, still alive and hooked up to the blood supply. Then we use the intestine to build a new bladder in the cavity where your original bladder came out. We hook one end up to your kidneys, the other end to your exit pipe, and you’re good to go.”

      I was completely floored that an actual doctor had put it in such terms. Dr. Reid looked at me and winked.

      “Actually, Frank, it’s just a little more complicated than that.”

Chapter Nine

      When Dr. Daneshmand returned a few minutes later, he resumed his explanation of the surgery he was proposing. It was pretty much exactly as Dr. Reid had paraphrased it; a new bladder would be constructed from my own body tissue. I told him that I would need to talk to my wife and think about it for twenty-four hours or so. He said of course, and the day was over. It was after six o’clock. I had been there for almost seven hours. I was yawning as I retrieved my car from the underground garage and drove to my hotel. When I got there I called home and gave Laura the long version of the day. She was encouraged that I thought so highly of Dr. Daneshmand and his team, but expressed her concern that he was asking me to jump into exactly what I had been so emphatically warned against: a quick decision to undergo radical surgery.

      We had lived in Portland from 1999–2001 before moving to the Seattle area, and I had lived in a company apartment downtown for five months before the family moved out there, so I knew downtown Portland very well. It was a typical November night, forty degrees or so with a light, steady rain. I walked up to Broadway and then north a half-dozen blocks to Higgins, one of the best known Pacific Northwest “farm to table” restaurants. I can’t remember eating, but I guess I did, and an hour or so later I was back on the wet streets, walking down Salmon Street to the Willamette River waterfront. I walked the length of the Tom McCall Waterfront Park on the west side of the river and crossed the Steel Bridge to the East Side Esplanade. It was getting late, but there were plenty of Portlanders out on a rainy weekday night—walkers, runners, and bikers, all oblivious to the steady rain. I walked on, pondering my situation. Was I ready to put my faith and possibly my life in the hands of a doctor I had met less than ten hours earlier? It was hard to grasp, but the more I turned his statistics and his logic over in my head, the more sense it made.

      I returned to the hotel sometime after 2:00 a.m., took a hot shower, and fell asleep quickly, to my surprise. I woke without an alarm at 6:15 the next morning, and felt amazingly well rested. A weird feeling of calm and confidence had come over me. I was also starving. As I ate bacon and eggs and drank good strong Portland coffee, I realized from where my calm confidence was coming. I had made my decision without consciously knowing it.

      I would put my life in Dr. Daneshmand’s hands, play offense, and have the surgery.

                               

                                                    *************************

“As a Stage 4 melanoma survivor, I found myself deeply moved by – and profoundly grateful for – Frank Sadowski's honest and enlightening account of what it's really like inside the cancer experience. But more than that, simply as a reader, I was enthralled with his effortless gift for compelling storytelling. Back to Life is full of humor, suspense, and grit, a medical drama that brims with heart and soul.”

-- Mary Elizabeth Williams, staff writer at Salon.com and author of Gimme Shelter and A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer.

Thanksgiving and Veteran’s Day

Today, December 21^st, 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 2^nd I underwent a procedure called a TURB (Trans-Urethral Resection of the Bladder) to remove a tumor.

On November 5^th, 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 21^st, 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 5^th, 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…