How My Cancer Might Save Your Life
“If you
start to take Vienna – take Vienna!!”
Napoleon
Bonaparte – on keeping focused on a goal, applying overwhelming force, and not
getting distracted.
My name is Kevin Berry, and I am the victim of a rare cancer called Mantle Cell Lymphoma. About 4% of cancers are lymphomas, and about 4% of those are MCL. When I was diagnosed in 2005, the current treatment gave me about a 50/50 chance of making it 3 years before relapse, little certainty of effective re-treatment, and a significantly shortened life span. Thanks to receiving the best medical care in the world, backed by top notch benefits, keeping right on the edge of medical science, by the time I finished treatment 17 months later, those 50/50 odds were out to 5 years with some hope of re-treatment. When I did relapse in 2012, at 7 years, the 50/50 spot was actually ahead of me. But, more importantly, I had several options for getting back in remission. As of today, I am almost back in remission and at least two exciting new treatments have the possibility of keeping me in long term remission, meaning I can foresee living into the "normal" range for American males.
I give formal and informal talks about cancer survivorship, being an effective patient and advocate, and the role of God versus disease. With depressing regularity, I also serve as the "third responder" to newly diagnosed patients and their loved ones. The book about my first adventure, "Taking Vienna," has been downloaded thousands of times and emailed countless others. This blog is the chronicle of my current endeavors.
There is a formula to public presentations about subjects like cancer. First, you shock the audience with your story. Then you give them information they need to know. You pressure them, undoubtedly incurring guilt, into realizing they need to change their life. Finally, you uplift and encourage them that it's possible. This article is my attempt to distill 8 years of learning, introspection, discussion, research, analysis, and editing into a simple, clear presentation. Disclaimer: virtually nothing that follows can be 100% backed up with scientific data. It isn't meant to be. I am the original science nerd, and the first thing a true scientist learns is that discovery happens by taking odd pieces that don't fit, or are not quite provable, and assembling them into a coherent theory. This is Kevin Berry's Theory Of How To Minimize Your Chances Of Getting Cancer, And If You Do Get It, How To Increase Your Odds Of Beating It. (I need a slightly sexier name, and maybe a pronounceable acronym. That will come to me, I'm sure, in a year or seven.)
How I Got Cancer
My risk factors were as high as they come. For most of my childhood, I lived with parents who smoked at home and in cars. I spent many years in Texas City, Texas, a chemical plant and refinery town. The air stank, flames lit the night, and when you washed your car you had to pull it into the garage to dry it, before it recoated with fallout. My childhood friend lived at the corner of Texas Avenue and Bay Street, in the heart of the industrial district. We swam and fished in Galveston Bay, eating the fish and crabs. There, and also in West Florida, we treated our yards and played in waste gypsum from the phosphate mines, now classified as radioactive hazardous waste.
In California, my relatives farmed. My uncle was an Ortho rep. His son, my age, had Hodgkin's Lymphoma as a boy. I worked in the orchards and fields, we dusted our garden with powdered bug poison, and hunted for food animals that ate in the seed bean fields, treated for weeds and insects.
On top of that I was an alcoholic throughout my teenage and young adult years.
In 2003, while working on the Shuttle Columbia debris recovery, working over 400 hours in the first month, I contracted a severe infection, Erysipelas , a serious staph infection. While it is fairly well known that severe infections can trigger some types of cancer, it is also possible that cancer was already present, and coupled with fatigue, allowed the infection. Either way, there is some scientific and I have much anecdotal evidence that severe infections may trigger cancer.
How You Might Get Cancer, or Not
We are bombarded with studies, articles, advertisements, books and memes about what causes, and what prevents, cancer. Chocolate, red wine, broccoli, and certain expensive berry juices cure it. Red meat, plastic bottles, foam food containers, and practically everything not made of all natural materials cause it. Unless the natural materials emit radon, radiation, or bad thoughts. As you'll see below, if I was a betting man, the question isn't "Might" so much as "When." For you or a close loved one.
The first time I fought The Beast, many well intentioned people helped me with information about lifestyle changes. Our family has always believed in nutrition and health, and we probably had a cleaner lifestyle than most Americans. But when faced with fatal cancer, I chose to go mainstream, with great results. Before, I ran occasional 5K races, worked hard, and sort of managed my weight. After, I helped organize and did a couple of mini-tri's; did some 5K's, and pretty much went "back to normal" with my diet. I was just glad to be over it.
Then I relapsed. And went down the science road again, while (partly consciously) deciding "what the hell. I have it again. I'm going to just eat the damned cheeseburgers and fries. What's it going to do, give me cancer?" Then, when it began to look like there was actually hope of beating it, medium to long term, and thanks to encouragement from my incredible wife, I had a sort of epiphany. If I got in remission, AND cleaned up my diet, I could maybe swing the odds a little more in my direction. And with some deep and true hope of living to 65, or 70, or maybe even longer, I was motivated. So, towards the end of this article, are a clear, easy list of things you can do to change the odds somewhat in your direction. The best part: they aren't trendy, they make sense in all contexts (healthy living or beating cancer or heart disease or having more energy or being more spiritual, etc), and they are easy.
Now For The Guilt Part
I need to make it clear I'm not comfortable with guilt. Giving it, I mean. Having it, I do. Well. Very well. Hey, I'm bred from a long line of solid Midwestern Farm Stock, where both genetically and culturally, guilt has been refined into a Family Value. But I prayed, and meditated, and truly feel I have a one time, God Granted, dispensation. Even though I'm a Methodist. So just this once, I'm going to admit, I don't cause your guilt. You do. Deal with it. (Please!)
Do you: Drink, smoke, have some extra weight, exercise too little, manage stress poorly, skip checkups, eat processed foods, drink milk, like sugar, eat and drink foods with preservatives, go outside, use lawn care products, get too little sleep, worry too much, or are unhappy?
Then, if you are male, you have a 1 in 2 chance of getting cancer, and a 1 in 4 chance of dying from it. Women? 1 in 3; 1 in 5. Actual Science
Yeah, that's right. 1 in 2 or 1 in 3.
What if you follow my tips below? What are my odds?
No clue. But better. Your Mileage May Vary. But I know which way the variance will be. So do you.
KBTOHTMYCOGC, AIYDGI, HTIYOOBI (made you look back, didn't I? I really do need a better name for this)
1. Get the checkups. All of them. Regularly.
2. Change your diet and lifestyle. Just a little bit.
3. Learn the difference between happiness and joy
That's it.
Checkups
My cancer was found during a yearly visit to my allergist to get a prescription renewed. Need to be motivated? Let me give you two ways.
Easy Way: Visit your family doctor. If you don't have one, get one. Have them list the things you need done, including getting an annual checkup. Take that list, get them done, and present it to your most loved one on their birthday. Repeat annually. Here's a start (not all are annual tests, but risk factors and recommendations change):
Annual Checkup
Chest X ray
Mammogram
Pap Smear
Prostate Exam
Colonoscopy
Dermotologist
Dentist
Eye Doctor
Hard Way: Men, don't like the prostate exam? Women, don't like mammograms? I can find you 1,000 people, by name, who would have one daily rather than what they are going through. I personally would take two colonoscopies over a ride in the chemo chair any time. Or seven.
Diet and Lifestyle
I'm not talking a new wave, odd, eat only weird stuff change. In my opinion, if you can change your diet by 25%, you will make HUGE strides towards fighting off cancer and living a more healthy lifestyle. Let's look at that. Say you, like most of us, eat 4 times a day. Three meals and a snack. 28 times a week. Start small and change just one of those 28 the first week, another the second, and in 7 weeks you'll meet the goal.
What change? Easy ones. Say you and buddy go to Fast Food Paradise for lunch. Instead of the Meal Deal, each get the burger. But split a small fry. You'll get enough. Diet soda? Sure. But fill it FULL of ice. If they have the little "soda only" button, put in a bit. Refill? Add more ice, more plain soda, don't top up the foam. You'll wind up drinking a whole less cup each visit.
Portion size. Don't put the food on the table. Leave it in the kitchen. Take a smaller than normal portion, and when done, sit and chat a bit. If you really want more, get up, walk over, take a spoonful, sit back down. Repeat.
Easiest of all? Antioxidants. Take a look at the list of 20 highest anti-oxidant foods. (This is what hooked me). Good Stuff Good For You Beans and blueberries. Really. No matter which list you look at, I happen to like almost ALL of it. I add a cup of blueberries to my morning cereal (see below); I eat beans all the time anyway, I love nuts. Artichoke Hearts? Great for you.
Harder but worth it. Organic foods. You can't do it all, pick your battles and financial impact. Milk must be done. You, and your kids, don't need any more hormones. Produce? We focus on the leafy vegetables; and try to also pick canned organic where possible. It costs, though.
Processed foods? That's where I scored my biggest percentage gain. I ALWAYS ate some sort of less sugared cereal, but still with some sugar, preservatives, etc. Now? Breakfast is shredded wheat. Read the ingredients. Wheat. Just that. I add in frozen or fresh fruit, sprinkle on a bit of stevia, skim organic milk, and eat till I burst. There are 5 of my 28 meals scored. Some of my snacks were always snack mix, I love it. Now I use lots of nuts, dried cranberries, maybe some organic pretzels. Low butter popcorn. And yes, sometimes (often) I eat ice cream. I'm switching to organic and using a little bowl.
Cut down on the amount of meat, especially red meat. Again, you're only looking for a 25% change, not a radical diet. Go organic on the meat, red or white. Plus the price will automatically downsize your intake.
Exercise is easy to increase a little bit, if you don't have a physical impairment. At the store, park far away instead of fighting for a close spot. You say you never have time for a walk, but you always seem to have time for the store. Add 5 minutes by parking out of the fray. Take the stairs at work, at least 2-3 floors up. ALWAYS take stairs down, up to 6 flights. Gravity works.
Motivation time. Remember that "your guilt is yours" deal. I'm cashing it in. I have my own version of the "Scared Straight" program. I've had cancer for 8 years. I've had 28 days in the chemo chair so far, 13 surgeries or procedures requiring anesthesia (for a "non-operative type cancer!); am just finishing up 24 radiation sessions, had a 6 month bone marrow transplant requiring a month in an isolation room, 9 different treatment types so far, and the pain and suffering of my family cannot be imagined. "I don't like to get blood drawn because needles scare me." - heard it. Go find any diabetic, or any cancer patient (one or the other lives on your block) and ask them about needles. "I don't have time for checkups. I hate doctors anyway" - heard it. "You just get sick at the doctor around all those sick people" - heard it. You cannot make an excuse I can't top.
So, if you live within driving distance of me, come on over the fourth Monday of every other month. You and I are going to share a ride on the Chemo Express. If you live farther away, call your local "Infusion Center" and ask to come in and observe. I mean this sincerely and honestly. Do it.
I absolutely guarantee two things, or double your time back in some sort of service from me: You will change your life, and you will begin to understand joy.
Chemo rooms are the most depressing places on earth. Chemo rooms are the most joyful places on earth. You come share any of my 6 hour sessions, and you will see beat up, physically broken, sick, odd looking people. There will be noises and smells and groans. There will be laughter, jokes, personal questions, personal answers, courage in 55 gallon drums, incredibly nice people, and you will see that you don't have a clue what joy is.
Happiness versus Joy
This is on you. I will give you a few clues about what gives me joy. I just added #4 a few weeks ago.
Rainbows - I love them. Always have. Why? Well, first off, at critical times in my life, like when my father died, and during major cancer milestones, one always "happens" to appear. My kids know of my love so much they run and get me, or call me, when they see one. I am The Rainbow Guy. Second, they have no reason. None. Look, I said I'm a science nerd. I know the mechanics. But every other item of beauty in nature, whether you believe in evolution or creation or both, has an ecological function assisted by the beauty. Rainbows have none. They are just pure beauty as a byproduct of physics.
Butterflies - Can't tell you why. I mean, their beauty does have a function. But to me, they are just moving flowers. I never pass one by. The 3 minutes I stand and watch one is exactly the same, and totally different, than rainbow watching.
Caramel Ice Cream Sundaes - proof that God Loves Us. Perfect mix of flavors. Despite my healthy eating rant above, this is part of the balance of life. I'll eat an extra bowl of blueberries, OK? Also, as part of my cancer counseling, and to everyone for a lifestyle change, I prescribe that three times a month, planned but spontaneously, you go by yourself and sit and eat a sundae. Take yourself on a date. So far, most patients who took this seriously have told me it was the best advice they got. Sometimes it's a root beer float, or a banana split. But McDonalds has a perfectly fine caramel sundae, cheap, and on the way home.
Fireworks - just added this. Meticulously planned, very common, socially acceptable, extremely temporary beauty, in a crowd gathered together to waste thousands of dollars on just looking at pretty stuff blow up. Fireworks are joy.
So that's the story, and the theory, and the motivation. I hope it was worth your time. And, just this once, I hope you feel REALLY guilty.
Kevin
