Cancer is emotional. It is emotional for patients, families, friends and colleagues. And there are few moments that are more touching to the human soul than hearing their stories recounting their journey, whether it is a success or unfortunately not. These stories are frequently incredible accounts of human spirit.
Yesterday--in a room of 1200 cancer professionals at the annual meeting of the National Comprehensive Cancer Network in Hollywood, Florida--there were stories told that left no one untouched. A moment when you could hear a pin drop, and see tears in the eyes of professionals who have seen so much heartache you would think they were used to it by now.
There was the football coach almost everyone knows who said that although he had been a leader all of his life and was expected to have the answers, when his wife was dying from cancer and he was all alone what he valued most was having someone to talk to who could be honest with him while he was being optimistic and hopeful for his family and friends.
And then there was the moment when the wife of a cancer survivor who is known to many of us was talking about her husband's treatment, choked up, stopped her words, wrote something on a paper, then said to the audience that when her husband was at his lowest moment and couldn't speak (as a result of his extensive surgery), he wrote something on a piece of paper which she had reproduced as she was making her comments. She held up the paper to the audience. The words he had written at the time and she wrote at the moment of her comment were chilling: "Kill me." And how she responded to those words offer all of us the insight into what so many survivors and their loved ones find within themselves at the worst moment of their lives.
The session was a roundtable discussion on "The Many Faces and Challenges of Caregivers."
The moderator was Sam Donaldson of ABC News fame, and himself a melanoma survivor. The participants included several people who may be known to you: the football coach was Bill Cowher, whose wife was diagnosed with melanoma and had a very short survival. The wife of the media celebrity was Charlie "Chaz" Ebert, wife of Roger Ebert. Other well known caregivers and patients on the panel included Liz Scott who is the mother of the late Alex Scott who is best known for "Alex's Lemonade Stand" and died from her neuroblastoma when very young. Jill Snow, the wife of Tony Snow--President George W. Bush's press secretary who died at a young age from colon cancer--was on the panel, as was Jai Pausch, the wife of Randy Pausch who died from pancreatic cancer and whose book "The Last Lecture" has been widely read and quoted. Dr. Sam Silver, a personal friend and colleague from the University of Michigan who is a cancer survivor and Mary Beth Reardon, RN, MS from Moffitt Cancer Center in Tampa, FL, Priscilla Mack--a breast cancer survivor who is the wife of former Flordia Senator Connie Mack who himself is a cancer survivor--and Suzanne Daulerio, the daughter of a longtime NCCN employee who died from lung cancer rounded out this incredible group of people.
I can't possibly go into detail on all of the comments that were made during this session, and if I had my wish it would be for this to be posted on the internet for all to see. These were all people who in one way or the other had to go through their journey while they were very much in the public eye. And throughout their recounting of their experiences, what came through was how human they all were, despite their place in life or their experience in treating and caring for cancer patients.
Here was a football coach who won a Super Bowl and left coaching while at the top of his game. He obviously loved his wife and loved his family. When his wife became ill, he was the one who had to hold her, care for her, walk her, and stay by her side. No cameras, no public adulation, just a man caring for someone he loved. To complicate matters, she had what he called "atypical Alzheimer's" so her ability to communicate and to share with her family were limited.
And then there were the mothers who were left to raise young children. Listening to these caregivers and patients talk about how they tried to communicate the reality of a parent's illness and the reality of their death with their children--from toddlers to teens to young adults--was incredibly touching. Listening to a mother describe how she talked to her daughter with cancer--who as a child had to become very much an adult and deal with the reality of the deaths of her friends being treated at the cancer center--left all of us emotionally drained. No one wants to have a child live and die with cancer, yet the strength of this mother and her daughter were beyond anything I can imagine.
My friend Sam Silver is one of the kindest and most generous people I know. He is a doctor's doctor, and even more important a patient's doctor. He is highly regarded by all who know and work with him. And as I listened to him talk about his illness--even for only a few moments--gave me insight to his illness that I never knew. And then I wondered what kind of a friend am I if didn't realize he had spent months in bed on a morphine drip because of pain. But maybe that is the message: no matter what he experienced as a patient, he has lived his life with honor and success, in no small part (as he noted for the audience) because of the love and support of his dear wife.
I could go on, but I suspect you understand why all of us were so touched.
Then there was the moment I mentioned above. Many of us know Roger Ebert from his days as a highly regarded (and highly watched) movie critic on television. As his wife recounted, Mr. Ebert was a man who lived life and loved life, and in their personal lives he was a man people wanted to be around.
He developed a cancer which required extensive surgery on his jaw. Here was a man who lived his life through his ability to communicate, and his surgery left him completely unable to talk and unable to eat. He had his surgery, and then he had a major bleeding episode from a blood vessel in the neck. He survived that. But life as he knew it was over, or so he thought.
When in the hospital, obviously in the throes of depression, he reached his bottom. It is a moment that everyone on the panel agreed comes during the course of cancer care, and few people--including cancer doctors--address it. It is the moment when people wonder whether it is worth going forward.
That was the moment when Mr. Ebert wrote the note to his wife, the one she held up to the audience yesterday, the one that shook all of us to our core when she spoke the words on the note: "Kill me." The moment when she had to reach deep into her soul and say to her husband that that was not an option. The moment when she said to him that if he had the will to live, she had the will to make his life interesting. The moment when they both realized that life had to go on. Maybe not the same life, but a valued life nonetheless.
And the good news? They succeeded. They made adjustments, they survived, and they figured out how to make it work.
I have heard a lot of talks. I have heard a lot of survivor and caregiver stories, all of which touch me very deeply. But I have never heard something as moving as I heard yesterday from this panel, and especially from Ms. Ebert.
As I said, there were tears in many eyes yesterday in this room. These were for the most part not stories of success when it comes to the effectiveness of treatment. But these were stories of success of the human spirit, of the commitment of patients, their families, their caregivers. The success of giving so much in a time of need, the success of our innate ability to reach deep inside ourselves at the most difficult moments of our lives to question our souls and find abilities we never thought we possessed.
Perhaps Mr. Cowher said it best as the session came to a close. Here was a man that bared his soul to 1200 people and showed his humanity to all of us.
When asked how he felt about the sadness he had experienced, he summed it up very directly: "I have no regrets."
Many of us will live this journey, some times successful, too many times not. There is no getting around or away from the sadness of a diagnosis of cancer. In the end, hopefully all of us who travel this journey will be able to say that we have no regrets.
That, my friends, is the true testament of the human spirit. And yesterday there were many testaments to that spirit from some very special and articulate people.
Cancer makes all of us human, makes all of us family that share a common experience. Those panel members didn't speak only for themselves, they spoke for everyone who has travelled that road.
I am incredibly grateful I was present when they shared their stories. I wish you could have done the same. It is a moment in time I will not soon forget.
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