Liz Claiborne, my wife of fifty years, died of peritoneal cancer on June 27, 2007. Every tool in the oncologists' toolbox had been mobilized to cure her, to ease the pain of chemotherapy and to mitigate the humiliation of bodily deterioration. When the tool box was empty, despite her courage, despite my stubborn struggle on her behalf, the cancer took her life.
The world knew her as a uniquely talented designer, a founder of a great fashion company, the first woman to form and lead a Fortune 500 company. She was known as a beautiful, gracious, accomplished artisan, who through her everyday work became a legend in her industry. And perhaps most important, she filled the needs of the multitude of women entering the work force.
But the world knew little of her nine years as a cancer patient. And now with medical issues and medical care of major concern to the broad public, I also pay tribute to Liz's years as a cancer patient -- in truth, as a terminal cancer patient -- and find in that struggle lessons of relevance for all of us.
Peritoneal cancer, a presence in her life from May 1988 to that last early morning on June 27, 2007, is an extremely rare disease, afflicting less than 10% of women diagnosed with ovarian cancer. It attacks the lining of the stomach -- the peritoneum -- and subtly seeds its surface with tiny malignant cells. Statistically, it is the equivalent of a death sentence: three to five years of life if the first treatment does not beat back the disease. The alternative, if remission fails, is often a pain-ridden life full of anxiety. Treatment, as in the case of many other cancers, is no guarantee of extended life. Total remission is extremely rare. "We had hoped for remission," said Dr. Mark Pasmantier, her oncologist. "We didn't get it. But we have a toolbox full of means of fighting back."
Liz didn't flinch. "What do we do next?" she asked.
Liz's cancer was discovered through a routine PAP test, periodically prescribed by her gynecologist. The appearance of unusual cells in this test was no guarantee that the disease was newly formed. But it was an indication that the patient had the option of treatment and the possibility of an extension of her life.
And here we come upon a major part of the contention in the health bill disputes in Washington -- the value and affordability of testing and therefore the value and affordability of early detection. To prescribe mammograms and PAP tests at this age or that -- or many other early detection tests, irrespective of a patient's financial means or age -- has become part of what the New York Times calls "Senate Health Care Follies."
That's one part of the cancer patients' vital concerns: to test or not to test. And even if the decision is made to test where will the funds come from for the vast majority of cancer-stricken patients?
For Liz and I this was no problem. We could easily afford the testing. We could also easily afford the treatment prescribed. And here we come to another bridge too broad for crossing for most Americans: the cost of the new drugs that have been and are continually being introduced. The New York Times recently featured this dilemma in an article called "A Fortune to Fight Cancer." Described were new drugs such as Erbitux for colon cancer, Folotyn, a drug that actually is known to shrink tumors but not to cure the cancer. Folotyn costs the patient $34,000 a week. It's an outrageous figure, defended by the drug maker because the patient often died within two weeks.
Avastin was available when Liz was in the last months of her life. It was not recommended as a curative, but it was used as a drug that would mitigate the effects of chemotherapy and keep the patient stable for a number of months. Liz lived nine months as an Avastin patient at a cost of $10,000 per month. We gladly paid and never felt that the drug did not live up to our expectations. Still, when Avastin failed, the tool box was empty, and Liz had truly become an "end of life patient."
Here is when our objectives became blurred, as must happen with many "end of life" patients. I fought, almost like an obsessed junkie, to keep her alive. She fought to live on for me. Her oncologist also fought to keep her alive because he hoped for a miracle, but he knew better. He had become as obsessive as we were, prey to an epidemic of unrealistic objectives. We fought to keep our Liz alive to no purpose other than the acquired habit of struggle and denial.
In the year after her death I wrote a book, "LIZ CLAIBORNE, The Legend, The Woman," which will be published April, 2010. Mark Pasmantier, her oncologist, read an early draft and wrote me the following letter:
I thoroughly enjoyed the book. One of the real treats of medicine is the chance to get to know some pretty amazing people. In so doing you get some insights into what's important in life. One of the lessons is to have the courage and the wisdom to go on living even when you know you are battling against what may well be a life ending illness. Certainly the book is a tribute to the Liz/Art team who managed to pack in an amazing life even when dealing with a clearly dramatic illness. It was a life filled with excitement and balance - family, friends, interesting activities as well as community, were miraculously juggled. Your kindness to her and your protection of her were truly an inspiration to all who saw the team in action.
Sincerely - Mark
End of life, as we all know, begins at inception. But that precise moment when all hope for continued living is irrational is a moment we find almost impossible to absorb. We've learned how to live. We have not learned how to die. But Liz accepted with all the grace and dignity for which she was known, her time to die.