This may seem like an strange mix to you, but a website for cancer patients, a guided imagery CD by a retired engineer from Texas, and audio books and CDs by a leading advocate for reducing stress through mindfulness meditation have greatly helped me cope with advanced stage cancer.
Here’s an overview of these valuable resources. Maybe they can help you, too.
This tops the list for a reason: Smart Patients is an online support group and trusted information site that has helped me immensely since my diagnosis with Stage IV kidney cancer in early 2011.
Back then it was a listserv online discussion board called ACOR, which stood for Association of Online Cancer Resources. Every type of cancer had its own listserv, or online discussion group, and the kidney cancer group was especially active.
ACOR evolved to Smart Patients, an online community where cancer patients and caregivers learn from each other about treatment options and side effects, clinical trials, the latest science, healthcare cost, and how all these issues fit into the overall context of the cancer experience (The ACOR listserv conversations are still archived and searchable, though).
On any given day, desperate pleas for advice from the recently diagnosed are answered by supportive, experienced cancer veterans, some of them patients, some of them caregivers, partners, spouses or widows. Conversations can be tagged and the whole site is searchable. There’s a very helpful searchable section on clinical trials that allows you to search by type of cancer.
“Miracle” cures are quickly debunked, but alternative healing techniques are for the most part supported if there is medical evidence backing any efficacy claims, and if the treatments can complement, and perhaps improve upon, any benefits that traditional medicine provides.
When the topic of guided imagery first appeared on the ACOR discussion thread I was skeptical. But after seeing some rational voices weigh in with support and testimonials, I decided I had little to lose but the $45 that Gerald White, a long-term survivor of Stage 4 kidney cancer, was charging for his book and CD. Three Months to Life is White’s account of his victory over cancer through relaxation and guided imagery. The CD it comes with contains the visualization exercises White developed, and which he credits for saving his life.
There have been times when listening to White’s gravelly voice describing white blood cells in battle seems kind of silly, and others when it is just what I need. His Texas-twanged baritone is an acquired taste, but I find it to be quite relaxing.
White, a retired engineer with 29 patents to his name, explains in his book that he took it upon himself to find a path toward conquering cancer on his own in 1993, following the removal of a 20-lb. tumor in his left kidney that subsequently metastasized to distant organs, and after eight months of other treatments had failed.
He maintains that there has never been a type of cancer or cancer cell that a healthy immune system could not “kill in open combat,” and it is possible to stimulate the immune system to do just that through visualization exercises.
Quoting the physician and philosopher Albert Schweitzer’s remark that “There’s a doctor inside of every patient is ready to be called upon to help with healing,” White notes that every cancer cell has on its surface an antigen, short for antibody generator, that the body’s different types of white blood cells identified and killed.
“I rarely ever meet a patient who’s ever even heard of a neutrophil, a macrophage, an NK cell, or even a T-Cell,” White says on his CD. “Yet these are all friendly and deadly fighters, present in the human immune system and ready to go to war with cancer cells.”
The goal of his guided imagery exercises is to train the subconscious right side of the brain, which contains the body’s involuntary responses, such as getting the lungs to breathe, the heart to beat, or the immune system to fight disease, to respond to suggestions coming from the brain’s left side.
“While the subconscious mind does not respond to orders, it does respond to suggestions, especially those conveyed by strong and repeated images,” White says, and cites as evidence The Relaxation Response, a pioneering book by Herbert Benson that advocates relaxation as a way to alleviate stress and fear, which both writers maintain are accelerators of cancer.
Benson, a Harvard-trained physician who founded the Benson-Henry Institute for Mind-Body Medicine at Massachusetts General Hospital in Boston, has steadfastly maintained throughout his academic career that guided imagery, prayer, and yoga, along with other relaxation techniques and contemplative practices, can be effective at fighting stress and diseases such as cancer.
My son Jakob introduced me to mindfulness, when he was a senior in high school, through the soothing voice of Jon Kabat-Zinn, reading from his best-selling book, Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness.
In the book, Kabat-Zinn provides the underpinning for the eight-week long Mindfulness-Based Stress Reduction course that he pioneered at the University of Massachusetts Medical School. Kabat-Zinn has been a leading figure in the mindfulness movement that continues to find adherents because it offers a way to navigate our busy lives by insisting that we develop the capacity to pay attention to moments that would normally avoid conscious thought.
Especially for those like me who are facing suddenly choppy waters, meditation can offer way to not only navigate through turbulence, but to calm it. The starting premise of mindfulness, as Kabat-Zinn explains it at least, is that no matter what is wrong with you, as long as you are breathing there is more right with you then wrong with you.
And, though stress is an unavoidable part of the normal human condition, and facing our problems is the only way to get past them, there is an art to facing those problems.
That art involves embracing the change that we have no control over, while realizing that it is not a disaster to be alive, even if we might be facing adversity. Just because we are feeling pain and suffering, he asserts that we should also open our minds to the possibility of joy as well as despair, and to hope as well as hopelessness.
Kabat-Zinn’s voice has been a reassuring tonic for my soul at very vulnerable and difficult times. Hearing his voice was more effective for me than reading his words on the page. As he turned his attention to meditation Kabat-Zinn offered a simple definition for this practice – paying attention, on purpose, to the present moment.
Unlike prayer, or my conception of prayer at least, meditation doesn’t involve asking for anything. Instead it’s all about acceptance and non-striving, and bringing your mind away from thinking about the past or the future.
Other points that Kabat-Zinn made began lodging themselves into my consciousness. This was partly because once I had listened to Full Catastrophe all the way through, I put it on shuffle in my iPod, along with the book he wrote a couple years later, Wherever You Are, There You Are. Rather than listen in a linear fashion, I found it invigorating to have Kabat-Zinn’s explanations and analyses pop up in random order, challenging me to listen to them with fresh ears.
Among the lessons that I tried to absorb was the notion of letting things unfold at their own pace, without trying to rush things. To illustrate this point, Kabat-Zinn described a child trying to speed up the metamorphosis of a caterpillar to a butterfly by opening up a cocoon. Striving is discouraged and acceptance is encouraged, and for me that often seemed incongruous – why wouldn’t I want to strive to cure my cancer? Why would I want to accept my diagnosis and fate? Upon reflection, however, I realized that Kabat-Zinn had a point, though it was important not to confuse acceptance with resignation, or even worse, giving up. Instead, non-striving and acceptance were a way to avoid the mental anguish of obsessing over what might have been or what should be, and instead focusing on what is.
Kabat-Zinn’s lessons on breathing, and his meditations, available on CD and in MP3 format, have also been extremely helpful. As he explained, a foundation of being mindful is to be able to concentrate on one’s breathing, to be aware of it without thinking about it, can help us cope with stress, agitation and restlessness.
The basic gist of the breathing is this – we are diaphragmatic breathers when we emerge from our mothers’ womb – that is our bellies expand as we inhale and contract as we exhale. Somewhere along the way, however, this natural rhythm often gets lost, but if we learn to focus on breathing this way again, even for a minute or two at a time, we can make great strides in relaxing ourselves and addressing stress. Breathing in this way – gently exhaling and inhaling through my stomach slowly yet deliberately was a way for me to counter the surface agitation of my thoughts and to dive into my mind’s deeper recesses, where things were calmer and not nearly as unsettled. Especially for a beginner, breathing exercises were extremely important for me.