(Editor’s Note: The author of this post, Bill Slatkin, was one of the participants of Patient Empowerment Network’s Patient Cafe™ March session for CLL patients.)
About as upbeat and energized as any of the 50 or more conferences I’ve attended over the years.
That was my impression when I first got a sense of the vibe at the Fifth Annual Conference of the Rocky Mountain Chapter of the Leukemia/Lymphoma Society in Denver, April 11.
That feeling stayed with me, watching people chatting amicably, somehow sharing, with absolute strangers, details of their medical lives they probably don’t discuss with close friends and relatives. It was as if we are some kind of family brought together because of something important we all have in common.
Well, we do have something important in common, dammit. We’ve all been given terrible, frightening news–news that’s literally a matter of life and death. So what’s with the upbeat moods? People smiling, even laughing. A community of survivors and their loved ones, glad to mingle and meet, mostly talking about things that belong to the celebrating-the-being-alive side of life—long-term connections, expanding families, happy events–not the other side: the one about the awareness we are quite possibly being stalked by the Grim Reaper.
The mood was every bit as elevated in that hall as the pulse I’ve experienced at conferences attended by people with shared business, social or other interests. But here, in Denver, we were not getting excited about new technologies or innovative efforts to protect our environment, or the challenges represented by dramatic changes in the publishing industry. The topic was Cancer. And somehow the positive effect of this chance to come together was more powerful than the sum of our individual anxieties about our relationships with the disease.
While getting accustomed to that irony, I also noticed how frequently speakers and attendees were using that word, “cancer,” and uttering it as casually as if they were talking about a “computer” at a database management conference.
Cancer. The word was being used without a trace of emotional content. (And the word “terminal” was used in a matter-of-fact way, sounding no more ominous than when it’s uttered with the word “computer” in front.)
Though used in a matter-of-fact way all day, it is, after all, the “C” word. It’s the word that–when we first heard it in reference to our selves, or a loved one–marked a significant, life-changing moment for most every person attending the conference. The moment each of us found out that cancer was touching us is a moment that each of us remembers in our own way, and that none of us ever will forget.
Ask someone the names and ages of her grand children, or the names and positions of the key players on his favorite sports team. You’ll get a fairly complete answer after some hesitancy and head scratching; after the individual has had time to mine the brain for the information. Now ask the same person about the moment he or she learned they or a loved one has cancer. It may have happened long ago, but the time and place the diagnosis was delivered aren’t facts buried deep in the archives of the memory along with everything else that happened back then. No. That information is right there, top of the mind, instantly available.
One compelling story we heard came from the keynote speaker, Ethan Zohn. Ethan’s claim to fame is winning a million bucks by outlasting other people in a televised competition called “Survivor—Africa.” I think the 400 or so attendees choked up along with Ethan when he described how he felt when learning the bone marrow transplant he’d received, after other treatments proved ineffective, had not done the trick. He said he’d experienced the medical procedure as more difficult than his days in Kenya when he was lost in an unfamiliar, frightening wilderness with little to eat and drink. The transplant was the most difficult experience of his life. In the end, it failed.
Ethan went on to talk about the following effort—a second transplant, this time with bone marrow donated by his brother. He explained what he does to manage the worry that this attempt might also prove ineffective. This fear can be a constant companion. But for today, he is alive and reminding himself to celebrate his aliveness. And on those days of being alive when the clouds of doubt block the light of his hopeful optimism, Ethan thinks about that worry, and he commits the details to writing. All of the slips of paper he has filled with his anxious thoughts about “what will I do if…?” go into his “worry box.” Should the day come when what he’s worried about becomes his reality, he plans to open the box and read its contents. Only then, only if it happens, will he allow his mind to entertain the questions about what to do next. Meanwhile, there are his experiences of joy and satisfaction using his story and his compassion to bring comfort to people who are suffering. And to share the spirit of hope.
His tone changed when he pointed out he was glad he’d done well in a show called “Survivor,” rather than the one called the “Walking Dead.”
Who could ask for a better keynote speaker? He’s a charming television personality who has dedicated his newly-awarded money and his energy to help people find their strength and their courage as they face this most daunting of life’s challenges. Ethan said he attributed his motivation to this motto: “Never let a crisis go to waste.”
His warm, humorous, enthusiastic delivery further elevated our level of optimistic energy. It felt as if most of the people in attendance were carrying around with us– in addition to the written materials we were handed–that positive mood. And a hopeful attitude, in spite of some of the frightening survival statistics we heard about from various speakers in the large ballroom and the breakout sessions in Denver’s Crown Plaza (Airport) Hotel.
Here are some of the things I learned in those sessions.
- Similar genetic markers: Diseases as varied as lung, ovarian, blood and breast cancer, though they differ in the form they take and the places in the body where they appear, often have remarkable similarities on a molecular level. That’s exciting news in the way it meshes with the strategy of using targeted therapies. Until not too long ago, oncologist threw every drug that might prove beneficial at a case of, say, lung cancer. And then they, along with their patients, would hope for the best. All were happy and relieved if the cancer appeared to be defeated. But they also knew the disease has a nasty habit of reoccurring, and in a different form that is resistant to whatever treatment beat the disease in the first battle. There was little understanding of what might work, and when, why and how it might come back. The scientific explanation behind remission or relapse contained a few good ideas and a lot of uncertainty.The current approach to treatment is less like using a canon as the go-to weapon in every battle simply because it’s the only weapon you have. As they learn what they want to attack, and how to kill it, clinical researchers are creating formulations with clearly defined missions and specific enemies. As they devise cancer treatment protocols, oncologists use what they know about the makeup of particular cancer cells wherever those cells might be attacking the patient’s body. And they are combining drugs, using multiple weapons ready to destroy the cancer they find today, and ready to keep combatting the disease with different chemical tools as the cells morph into different forms, attempting to avoid destruction and to complete their deadly work. Figures tracking recoveries and longevity are showing positive results of this strategy in many forms of cancer.
- Communicating with your doctor: Some 86% of the doctors recently polled, reported good relationships with their patients, while only 20% of those patients agreed. The presenters, Jeffrey Matous, MD and nurse practitioner Megan Anderson, who work together at the Colorado Blood Cancer Institute, discussed how this problem might be solved. They advocate that patients become better prepared (bring a list of concerns to discuss, then take notes or get an audio recording of what transpired.) And they stress that many doctors should make more of an effort to listen. They cited a quote by a speaker (Terry Cenala) who told doctors at an American Academy of Orthopedic Surgeons, meeting: “Patients will never care how much you know until they know how much you care.”
- Complimentary alternative medicine: Healing occurs most effectively when the body is understood as intimately connected to—not separate from – a person’s emotions, mind and spirit. Discussing this topic, the presenters emphasized that a patient can expect a better outcome when working “in partnership” with the medical professionals, rather than being a passive recipient of whatever treatment the doctor or other practitioner chooses to provide. Offering their ideas, discoveries and insights were Fred Grover, Jr, MD, a Denver family physician whose website, RevolutionaryMD, features a range of topics related to integrative medicine; Sandy Priester, MBA, representing LifeSpark Cancer Resources, who discussed the benefits of the Reiki treatment and other healing methods; and Xiaorong Ding, PhD, speaking about her work at the Center for Traditional Chinese Medicine
- Clinical Trials: Steady progress is being made in this area as professionals become more sophisticated about targeting therapies to gene-specific diseases. And new methods of assigning patients to the groups within a study are increasing the numbers of trial subjects who are likely to be selected for the protocol proving to be the most successful. Dax Kurbegov, MD, representing the National Oncology Service Line at Catholic Health Initiatives, led up to this discussion with a fascinating history of what we now call clinical trials. In perhaps the earliest clinical trial, a 1747 experiment involving a crew of sailors, two crew members were given oranges with their meals, and rode out the voyage disease free. Meanwhile, their shipmates, who had received extra helpings of meat and other food items, but no citrus, were falling ill. Thanks to his cleverly planned experiment, Dr. John Lind discovered a way to prevent scurvy, the disease that was felling one ship’s crew after another.
At the conclusion of our final breakout session, I learned how this conference is unlike many other conferences I’ve attended. Suzanne (my wife) and I happily gave up our badges to a member of the staff that organized this event, and we headed for the door. There was no desire to continue conversations we’d had with people we’d met. We didn’t want to exchange business cards. And there was no “after conference” party to attend. That was enough cancer for one day. We were glad we’d attended and happy to leave.
As Suzanne and I walked across the parking lot toward our car, it occurred to me that I somehow felt better about my battle with this disease. And it was not just because of new information. I had met and observed a lot of folks bravely facing what I have to face. And I’d been exposed to some very bright medical professionals who are dedicated to helping me and all the other people who, in the occasional moments of despair, wonder why our bodies have turned against us.
All of these experiences: information, connections with fellow survivors, the positive and encouraging attitudes of the professionals I encountered, help me to cultivate a spirit of hope. And I think cultivating hope is an important part of my campaign to become healthy again.