By Michael Sieverts
This is a handout for the “Chemobrain” panel I moderated on February 21st at the Cancer Support Community-Benjamin Center. From my introduction that evening:
This is an incredibly important moment in the history of cancer treatment, and we appear to be at an inflection point in terms of understanding the multitude of diseases we refer to collectively as cancer. A good deal of the excitement has to do with scientific breakthroughs in new imaging refinements, a greater understanding of genetics and the merging of math, chemistry, biology and physics. Young scientists aren’t staying in one discipline any more, instead they take up careers such as, “computational biologist,” and collaborate across disciplines.
But the other area of enormous progress, which is emerging as we speak, is the voice of the patient—our voice. As medicine becomes more collaborative, as we access our own information on the web and through other sources, and as we start talking to EACH OTHER and acquiring a collective intelligence, we have within our grasp the tools to take the entire enterprise to a whole different level.
This is not merely consistent with the mission of the Cancer Support Community—it IS the mission: that by becoming an active participant in your fight for recovery, along with your healthcare team, you’ll have a better quality of life.
One thing that’s important to keep in mind is that THIS IS A NICE PROBLEM TO HAVE—because by definition, having chemo brain is an indication that you’re alive. This is not a small victory, considering how many of us are here tonight despite having illnesses that not so long ago were characterized as “invariably fatal.” What a luxury, at one level, to have the focus shift from “how do I stay alive” to “how do I have a good quality of life?”
Michael’s Tips and Tricks to Recover Your Life
Even though these tips and tricks are divided into categories, there are actually no real divisions. When you go to a support group, for example, you acquire important and relevant medical information about your illness. When you go to an exercise class, you get support from the other class members and improve your cognition. When you meditate, you gain calmness and increase your focus. And so on.
If I had to limit myself to one sentence of advice, I’d be hard-pressed. But here goes: pay close, moment-to-moment nonjudgmental attention to what’s happening in you and around you, get and stay healthy, get support, claim your strengths without obsessing about what you perceive as your failings, and be grateful and peaceful whenever you can manage it.
I highly encourage you to seek out people to support you in the process, people who have gone through what you’re going through—their advice and support is invaluable. If your illness is so obscure or rare that you can’t find other survivors locally, use the Internet to locate others—just about every disease has its own community at this point. That’s how you’re going to find the right treatments and right doctors—the good doctors get better results.
Techniques to Build Cognition:
● Build your memory: challenge your brain by learning a new language or a musical instrument. Doing crosswords and Sudoku are fine, but the skills involved don’t seem to translate to tackling other kinds of tasks.
● Keep your mind active—keep a journal, read literature and poetry, go to concerts and museums and lectures.
● Be actively involved in your medical treatment. Research and understand your illness—become a partner in your recovery with your medical team, stay current on advances in the field, join the e-patient movement.
● Research which parts of your brain are not functioning well, because that will inform you about where to direct your recovery effort.
● Find the best doctors for your specific illness, and then make them look like geniuses by having the best recovery possible.
● Find gentle ways of challenging yourself, look for your true talents—your gifts will always be your gifts, in my experience.
● Practice—aim for continual improvement and develop good habits.
● Treat your attention as a valuable resource, spend it wisely.
“Ever try. Ever fail. No matter. Try again. Fail again. Fail better.” – Samuel Beckett
Reading List and Web Resources:
Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman, MD, PhD, and Idelle Davidson
www.YourBrainAfterChemo.blogspot.com
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (Null) by Norman Doidge
The Body Has a Mind of Its Own: How Body Maps in Your Brain Help You Do (Almost) Everything Better by Sandra Blakeslee and Matthew Blakeslee
SAT Question of the Day:
Word a Day:
Seek out intelligent discussions:
TED talks:
Google Talks:
Poptech Talks:
e-patient movement:
Charlie Rose’s Brain Series:
Compensation Strategies (adapted from “Your Brain After Chemo”):
● Stay present. Remind yourself to focus. Learn to meditate, and to pause before you take an action.
● Prioritize. Don’t think that you can multitask and perform. Do fewer things and do them well. What you decide not to do might be as important as what you actually decide to do.
● Develop routines. Keep the same daily schedule as much as possible. Prepare for the day the night before by reviewing your calendar. Exercise and eat at regular times, use a divided pillbox to remind you to take your medications properly.
● Rehearse. “Repeat to remember” to improve short-term memory, “remember to repeat” for longer term memory.
● Tell yourself stories about the person you just met. Say the name out loud, ask them to spell it, remark on the similarities to a celebrity’s name, or to someone else you know with the same name.
● Use word associations and rhyming. This increases the impact of a name or address on memory.
● Cue the senses.
● Break numbers into chunks.
● Don’t use scratch paper. Instead use a single notebook.
● Use a paper daily planner to write down all your activities, even movies and chores—and remember to look at it. You remember things better when you write them by hand than if you type them on a keyboard.
● Use your planner to keep track of your memory problems and other symptoms, so you can discuss changes in your condition with your doctor, who’s going to want to know what happened and when. Do not ignore symptoms, regard them as a blessing, if they lead you to solving a problem earlier than later.
● Everything in its place. Always put keys, checkbook, cell phone and wallet in exactly the same places. Start regarding your purse or backpack as a system.
● Chew gum, yawn—increases oxygen flow to the brain.
● Retain a sense of humor—it’s lighter than you think. Self-forgiveness is an important way to “get over it.”
● Sometimes something that seems terrible can be viewed from a different angle, and regarded as not only not so serious, but maybe as a benefit—and possibly as a great benefit.
Manage your technology:
● Use email to make a data trail of conversations and commitments, and ask family and friends to sign on too to this method of communicating.
● If you have a task to accomplish, don’t respond to every email as it comes in—look at them and respond to them in batches.
● Manage the phone—don’t answer unless you know who it is and it’s someone you want to talk to at that moment. Use anonymous call blocking, caller ID, and an answering machine to screen calls.
● Minimize television viewing, especially TV news.
● Don’t expect a smart phone to replace a computer—it’s too hard to read attachments on a phone, you don’t retain the information the same way.
● Use your computer’s alarm functions to remind you to do certain tasks—moving the car for street cleaning, for example, or picking up kids.
● Leave messages for yourself as reminders. Call your own answering machine.
● Use a timer when cooking, stay near the stove when it’s on, don’t wander away from the kitchen.
Driving:
● If you drive a car, be aware that cognitive deficits don’t make you a better driver, and that a car is a weapon to bicycles and pedestrians.
● Drive carefully, on familiar routes, being patient and generous with other drivers.
● Allow enough time or permit yourself to be slightly late—“caught in traffic” is a completely valid excuse in LA.
● If you are feeling iffy about your cognition—we can often tell when we’re not 100%--either stay home or, if you’re out, drive slowly and carefully home.
● Drowsiness is a cause for red alert—pull over immediately.
● Learn the bus system, let professionals drive you where you need to go.
Reading List and Web Resources:
Meditation:
There are many forms of meditation, and choosing one over the other is a matter of personal preference. I happen to like mindfulness-based meditation, as promulgated by Jon Kabat-Zinn—the tone of his advice is just right for me and many others, but it might not be for you, you might prefer a meditation technique that utilizes a mantra, like Transcendental Meditation, or any of the other forms. No matter—you can use any one of them to deeply explore your consciousness.
The key thing to remember is that learning to be in the present, in the now, is both utterly simple and very challenging. It can take a lifetime to learn. Even the Dalai Lama says that he’s still learning.
There’s a reason they call it a practice:
When we are giving ourselves the experience of being relaxed, calm, alert and objective, we are practicing and perfecting mindfulness. When we are being tense or angry or anxious, we are practicing and perfecting being those states as well—BUT, if we are observing that we are going to those places while we’re doing it, we have the opportunity to take ourselves back to the relaxed place. It’s ultimately about cultivating an inner strength.
I’ve heard the distinction made between prayer and mediation is that when you pray you’re talking, you’re asking for something—and when you meditate you’re just listening. Some people call it “falling awake.”
There’s a huge body of literature, and courses offered everywhere, many for free.
You can study in classes, and go on retreats, which are great, but ultimately the idea is to be able to live your whole life with a mindful aspect. As my teacher says, “lead an ordinary life and make changes from within that life.”
Don’t let your environment throw you off, cultivate inner strength and the ability to not let your mind wander.
Reading List and Web Resources:
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn (You can Google Jon Kabat-Zinn for tapes, CD’s and online videos)
Exercise/Sleep (adapted from “Brain Rules”)
Exercise:
Properly done to avoid depletion and injury, exercise is one of the best things you can do for your cognition. Early human brains developed in almost continuous motion, hunting and gathering food, walking vast distances daily. Only recently have we become physically idle.
All exercise increases blood flow and oxygen levels. Increased oxygen to the brain is associated with improved cognitive function. Exercise rids the body of stress chemicals, and boosts brain power. It cuts the risk of dementia in half.
My observation is that the healthier you are, the easier it is to survive the treatments. If you have the “luxury” knowing that a treatment or procedure is imminent (as opposed to requiring an emergency surgery), prepare yourself by getting as strong as possible. Train as if you’re training for a triathalon, you’ll need all the strength you can muster.
Your regular exercise:
● Exercise daily, but not necessarily vigorously—at least 30 minutes, out in natural light and fresh air when feasible.
● Power walking, swinging light weights in your hands to involve your upper body, is a great way to get exercise. Human brains evolved as we walked great distances, and it remains the best all-round exercise.
● Gentle yoga, Feldenkrais, Qi Gong—explore to find the ones that work best for you.
● Any exercise that makes you feel light—that’s the right one for you.
● Avoid exercise that depletes you, which is bad for your immune system.
Sleep:
Sleep is incredibly important, for cognition, for the immune system, for mood and happiness, so develop good sleep hygiene. Avoid going deep into sleep debt—accumulating consecutive nights of short sleep. “You can’t be healthy if you’re not getting good sleep”:
● Go to bed at a regular time, preferably before 11pm.
● Avoid stimulating activity for the few hours before bed, prepare.
● Avoid eating before going to bed.
● Don’t watch television, or work on a computer in bed.
● Use relaxation techniques to help yourself fall asleep.
● Use the bedroom only for sleeping and sex, not for eating or working.
● Keep the bedroom dark—light interferes with the functioning of your pineal gland.
● If you are occasionally unable to sleep, don’t stress about it, get up for a little while and do something else, preferably not too stimulating.
● If you feel drowsiness, be extremely careful, you literally could fall asleep in a heartbeat—do not drive!
● If you’re having regular trouble sleeping, see a specialist.
Reading List and Web Resources:
The Way of Energy: Mastering the Chinese Art of Internal Strength with Chi Kung Exercise (A Gaia Original) by Kam Chuen Lam
The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection Between Health, Happiness, and a Good Night's Sleepby William C. Dement and Christopher Vaughan
Nutrition (adapted from “Food Rules”):
Eating should be a source of pleasure. The reality is that we’re omnivores, and people have been thriving on a wide variety of diets for millenia. Michael Pollan says that the field of nutrition today is like the field of surgery in 1650—promising, and interesting to watch, but not yet deserving of our total trust. The popular press has made a total hash of the field of nutrition by using the latest headlines to sell papers— findings which gyrate wildly. Margarine, fats, carbohydrates, —sometimes they are the villains, causing all sorts of health problems—then they regain or fall out of favor. And the government is under the sway of the agriculture and food lobbyists; federal dietary guidelines and recommendations are compromised and getting worse.
But don’t stress too much, it’s not difficult to make good food decisions, especially now. Make sure to enjoy yourself, to make eating a pleasurable, slow, and social, function. Follow some simple guidelines, and use your self-awareness to inform you whether what you’re choosing to eat is helping you or causing you setbacks.
Whenever feasible, do your own cooking with organic, local, seasonal, sustainable fruits and vegetables. (Support farmers and the local economy with your money—you are voting for a healthful food system.) Not only can you control the ingredients and the cooking methods, but you are taking an active role in your fight for recovery. Plus you will save money by not eating out. It’s estimated that as much of 2/3 of the cost of medical care in this country is attributable to our poor eating habits. Cooking is a profound way to influence your health: “The best public health tools are a sharp chef’s knife, two cutting boards and a salad spinner.” (Preston Maring, MD, associate physician-in-chief at Kaiser Permanente Oakland)
Restrict wheat, dairy and try to eliminate sugar—but aim for “90-10”: allow yourself some small indulgences to retain feelings of pleasure, since mood affects how you digest. A happily-enjoyed burger is probably providing better-absorbed nutrients than an organic raw kale salad that you are forcing down. Savor what you eat.
Other rules:
● Don’t eat food that comes through your car window.
● Read labels-- avoid foods with sugar (or sugar equivalent) as one of the first 3 ingredients.
● Avoid food with more than 5 ingredients, or made with ingredients you wouldn’t plausibly have in your pantry.
● Junk food is fine if you make it yourself. If you had to clean up after every batch of French fries, you’d rarely make them.
● Get the best ingredients, from farmers if possible. If you shop in supermarkets, buy only on the perimeter—it’s where they put the freshest food.
● Eat until you are satisfied, not full.
● Don’t feel like you have to finish what’s on your plate.
● Don’t go back for seconds.
● Spend more on ingredients, but eat less.
● Transparency is important—don’t buy from vendors who are secretive about where their food comes from.
● Local non-organic is better than organic from long distances—foreign agricultural practices are unregulated.
● Eat food in season—it tastes better, has traveled less.
● Eat a rainbow of plant foods—the phytonutrients in the colors are very healthful.
● Spend at least as much time eating a meal as it took to prepare it.
● Try not to eat alone.
● Break the rules occasionally.
Reading List and Web Resources:
Dr. Jeanne Wallace:
Attitude/Belief/Support:
Last but not least: the goal is not to live forever, nor to return to an old place, but rather to transform ourselves into healthy people, utterly at peace with ourselves, our families and our friends. Create a tradition of peacefulness:
● Feel gratitude
● Forgive yourself, lighten up, and loosen your grip. Find some humor in your situation.
● Cycle through the Mel Brooks catalog and other comedies.
● Connect to others, don’t try to keep everything internal. Cultivate relationships with those who support your healing process and your medical choices.
● Be aware of whether someone is being helpful or not—and if not, find a way to marginalize and ignore them.
● Develop an immune-competent personality, monitoring and taking care of your own needs, and resisting becoming a self-sacrificing martyr.
● Reduce your anger, stress and anxiety.
● Don’t do anything you hate doing—if it’s something that you have to do, find a way to re-frame it so that you’re not flooding your system with stress hormones.
● Use your illness as a teacher—what it can tell you about medicine, about compassion for yourself and others, and about how to care for yourself.
● An illness is a terrible thing, but with the right attitude it might be a benefit—and it might wind up being the best thing that ever happened to you.
● Find your true talent, discover your purpose in life. Why have we been put here?
Reading List and Web Resources:
Cancer As a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals by Lawrence Leshan
I’d like you to keep in mind Raymond Carver’s last poem:
Did you get what you wanted from this life, even so?
I did.
And what did you want?
To find myself loved,
To feel myself loved, on this earth.
I did.
And what did you want?
To find myself loved,
To feel myself loved, on this earth.
Stay in touch with your loved ones, radiate peacefulness, and stay part of the conversation.
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