Everything Changes - The Guide to Young Adult Cancer

I’d always thought of registered dietitians as women who sit behind a desk outside a cafeteria and tell you to drink Ensure and eat canned vegetables.  I recently I’ve learned how wrong I was.

Tons of chronically ill patients feel pressured, overwhelmed, and unhinged by all the healing diets that are thrown in our faces.   (Want some proof? Check out the comments on my post Are You Overwhelmed By Cancer and Diet Choices.)  I’m constantly wondering what’s smart and scientifically proven, and what is just trendy, a scam, or even a well meaning goose chase for the cure.  What about cleansing, eating raw, eating organic, and fasting?  How can cancer patients eat well if they don’t have three hours a day to cook or a bank account to pay for Whole Foods shopping?  And what about those of us who are really sick from treatment and can hardly eat let alone follow a strict diet?

At the beginning of my quest for info, I learned the difference between a nutritionist and a registered dietitian:  Anyone can call themselves a nutritionist - the label holds zero clout.  But RDs have graduate level training, understand science and chemistry, and sit for licensing exams.

So I started over the phone nutrition counseling with a Greta Macaire, an RD from my hospital.  Free, individualized counseling from someone who wasn’t trying to sell me a lifestyle, a product, or a workshop – I loved it!  Her practical recommendations gave me a sense of ease that no Lola Granola cancer diet has.

I wanted to share her advice with the rest of you.  So I had her on  the Stupid Cancer Show along with her colleague Natalie Ledesma and  Breastless in the City author Cathy Bueti.  I also reviewed on air Rebecca Katz’s new book The Cancer Fighting Kitchen, which is a must-have cookbook for learning how to cook and eat during treatment and after.  You can download for free the podcast from 11/16/09 Cancer and Nutrition Part 1- Finding Balance.  (The nutrition conversation starts at minute 24:00 if you want to fast forward.)

It’s been so helpful to have a trusted source dispel the myths about cancer and nutrition, and to give me simple, economical ways to support my body.  No quick-fix magic pills nor Ensure or canned veggies.  Just sound advice.

Have you ever used a registered dietitian? Is there sanity in your diet?  If so, how did you find it and from what sources?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more tips on how to save money and time as a cancer patient.

During PET scans, my cells gobble up an injected glucose tracer (much like I gobbled up three pieces of blueberry pie in one sitting for breakfast last week.)  So if my cancer cells are thriving on sugar, does that mean eating sugar will encourage cancer growth?

No.  Our body chemistry isn’t that simple.  I’m bombarded by over the top and overly simplistic web comments and articles about cancer and sugar, written by folks who range from fad diet elites to total wacky freaks.  And that’s not who I trust for medical information.

Diana Ulman, founder of The Ulman Cancer Fund for Young Adults, recently told me about Rachel Beller.  She isn’t just another gal swept up by healthy eating who hung a nutrition shingle on her door.  She is a Registered Dietitian with a master’s degree and clinical experience, who makes recommendations based on evidence based scientific research – the kinda info that makes it into peer-reviewed journals.

Surfing her website, I found her article on cancer and sugar.  Here’s a great quote: “Sugar doesn’t just feed cancer cells; rather, sugar feeds ALL the cells of the body, including cancer cells. The body needs sugar to function, and if sugar is cut out of the diet, the body will then produce sugar from other sources of dietary intake, including proteins and fats. So cutting out sugar won’t really help. Cutting down may not be a bad idea because when one eats a lot of sugar, it causes the body to produce more insulin. Insulin promotes cellular growth, including cancer cellular growth. While insulin is necessary for normal healthy cells, too much of it can have undesirable effects, including increased cancer cell growth.”

Rachel suggests moderation (not so trendy, but very wise):  Increasing protein, fiber, and good fat helps the body produce less insulin while giving you good nutrition.  Eating sugar with a protein, fiber, and good fat helps your body process sugar in a healthier way.  Natural sugar is better for you, and she advises ditching soda and limiting candy and sweet treats.  Sounds pretty reasonable to me.

Here’s my sugar regimen: No to pop, high fructose corn syrup, and packaged baked goods.  Yes to jumbo bags of Reese’s Pieces a couple times a year at the movies, and baking Martha Stewart and my mom’s recipes for cakes, pies, cobblers, and tarts -  I cut the sugar in half or even less and it tastes better!

Have you ever been freaked out that sugar is going to cause your cancer to grow?  Have you ever ditched sugar?  Do you feel better when you don’t eat it?

To learn more about evidence-based complementary and alternative medicince read my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Here’s a great question I got from a reader living with lupus:

Dear Kairol,
A number of people are giving me well meaning but downright useless and unsolicited advice about my illness and how I should handle it - diet suggestions, names of new doctors, and how to manage my illness in the workplace.    It upsets me to the point that I’m sometimes in tears afterwards.   They are trying to help but not with what I need the most: grocery shopping, cooking or sheltering me from their germs.  How do I handle this?
Anon Me Again.

Dear Anon Me Again,
When we’re sick people feel helpless and they grasp at advice to try and make us feel better. Here are some ways to respond:

Heart to heart. If it’s coming from a valued friend, have a heart to heart talk.  Use good therapy talk like “I” statements to describe how you feel, and remind them how much you value their friendship.  Tell them how hard your disease is physically and emotionally, how personal your healthcare choices are, and how their advice makes you feel.  They may not know their comments have made you cry and if they love you, they’ll care.   Talk about the specific kinds of help you really need and how much their help would mean to you.

Elevator lines. If it’s coming from an acquaintance in casual conversation, prepare a practiced response that you say in a positive tone of voice, and then redirect the conversation to another topic. Such as: “Oh, wait – I know what you are going to say, but I actually have a great diet that works well for me.  Thanks for the idea, but I’m really cool in that department.”  Or, “Wait, I know you have some good advice for me, but I am on information overload about my disease, and I need to take an official break from thinking it.  But thanks anyway.” The more you do this the easier it becomes, and it’s very empowering.

The drama reduction program. I write about the DRP in my book Everything Changes and how great it was to rid my life of dramatic people.  Who are the people dishing out this advice?  Are they pushy, dramatic, tiresome, or bothersome in general?  If so, limit your contact or give them the axe.  Sound harsh?  As a young adult cancer patient, I only have so much energy to go around. I’m picky about who I give it to.

What is the most irritating unsolicited advice you have been given?  How do you handle situations like these?  Are you ever guilty of doing the same to others?  (Hard as I try, I know I am from time to time.)

For more details about my utterly liberating Drama Reduction Program, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Go green, vegan, raw, buy organic, juice up, chow on berries, ditch sugar. There are anti-cancer diet books, blogs, and products galore that tempt me where it most hurts – the idea that what I eat will make my cancer go away.

It’s anxiety provoking, wanting nothing more than to be cancer free and having to walk through the daily media circus of onco-food washing. There’s so much “information” with so little evidence behind it. It’s overwhelming to know what’s actually good for my body. There are times when I’ve wanted to cry raising a fork to my mouth and wondering if the food on it was killing me.

Some of the logic seems straightforward: put carcinogenic chicken in my body and increase my cancer burden. But for me, it isn’t that simple. Leading up to my diagnosis I was vegetarian for 14 years, vegan for 7 of them, did brown rice fasts, and thrived on organic greens and bulk whole grains. On this clean and green lifestyle, 19 tumors grew in my neck. It’s hard to know where to turn after that.

Enter Shannon, my voice of reason. It killed him to see me so freaked out over trying to be healthy. So we came up with a plan for what I should eat: 1. No dairy – it just makes me feel like crap – except I still eat organic butter, blue cheese, and bread pudding. (Why suck the joy out of life?) 2. Only organic and pasture fed meat and eggs. This means I eat a lot less meat because it’s expensive, hard to find, and almost never available in restaurants. It tastes a hell of a lot better though.  3. No packaged crap. This is nothing new for me. 4. Quality baked goods when I feel like it, which is only every so often. I’m talking peach cobblers with buttery crusts NOT brown rice syrup cookies.

Food is a pleasure for me again. I have no guesswork, no beating myself up at mealtime. And because I made these healthy rules myself, it is easy for me to comply with them, and to change them over time if they need tweaking.

Wheatgrass fasts might be fine for others, but for me, I’m anti anti-cancer diets. Instead I like the idea of crafting food guidelines tailored specifically to my life and my values. When creating a “diet” that worked for me here’s what I considered. Hope these are helpful for you too:

* How much time do I have for special meal preparation?
* How much money do I have in my budget to spend on food?
* What is the availability of quality produce and meats in my area?
* What makes my body feel good?
* Am I getting enough calories, protein, and nutrients?
* Do I trust the sources that are telling me what I should or should not eat?

Do you ever stress out about food contributing to your cancer burden? How do you tame that anxiety? Have you ever tried a cancer diet? Was it sustainable? What is your ideal healthy diet?

For more tips on balanced, healthy approaches to cancer and body mind healing, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Whole Foods ain’t nicknamed Whole Paycheck for nothing. For young adult cancer patients (or anyone else with an illness) co-pays, medicine, medical debt, student loans, and time off work all take a toll on your cash flow - not to mention this whole recession thang.

I only shop at Whole Foods occasionally and am careful to buy the best bang for my buck items.  Here are my favorites:

1. Wild caught yellow fin tuna burgers, frozen
Because they are frozen they won’t go bad before I can eat them (spoilage is the worst waste of food money ever), plus most fish you buy at the market has been frozen anyway.  They are fast to cook, a nice hit of protein.

2.  Organic sausage
Expensive, but fast to cook, again a nice hit of organic protein.  I buy them for myself – Shannon eats the non-organic from Trader Joe’s – much less expensive.

3.  Organic Sale Produce
I buy mostly just a few sale items, but be careful in the produce aisle - there’s a difference between a sale and a good deal.  Example: regular priced organic romaine is way cheaper than on sale organic radicchio.  I also avoid berries - organic are too expensive - conventional too many pesticides.  Anti-oxidants? Show me a cancer study that was not on rats and made a truly significant difference with only a pint or two of berries.

4.  Spices
I usually use fresh lemon, salt, and pepper instead of spices but if I want to buy a spice, bulk at Whole Foods is the cheapest around.



5.  365 Brand Body Products
Walk the body care section with blinders on, by pass all the green-washed, pretty labels that will eat your wallet alive, and head straight for the 365 products.  They are very well priced and free of most skanky carcinogens like parabens.

Do you ever shop at Whole Foods or is it way beyond your budget?  Have you ever used food stamps at Whole Foods?  What are your favorite bang for your buck WF items?  Help me grow my list!

I have a horrible history of arguing with PETA (People for the Ethical Treatment of Animals) advocates, like the big Foie Gras debate in Central Park where the PETA volunteer almost clobbered me with her clipboard.

I now have another beef to pick with PETA. (Would you ever know that when I was diagnosed with cancer I had already been vegetarian for 14 years, vegan for seven? I do love cows and geese, it’s just these wactivists are absurd!)

According to the blog Disruptive Women in Healthcare, PETA is sending letters to the CEOs of major hospitals urging them to reduce their carbon footprint by eliminating meat as an option to patients, visitors and employees. I like the response of Glenna Crooks, the blogger who posted the story. She argued that transitions to meat free diets take time for our bodies and schedules to adjust to, and there is a learning curve for educating oneself about proper vegetarian nutrition.

I agree with Glenna. During and after a hospital stay is not the right time to throw another wrench into a patient’s already complex and life altering care plan. Hell, if some of us in cancer treatment or after surgery can manage to swallow a bite of boiled chicken or sip beef bullion, it is cause for a celebration not a PETA demonstration.

Hospitals should try to reduce their carbon footprint, but they should look to The University of Pittsburgh Medical Center as an example of how to do so through adopting energy efficiency standards.

Are you, were you, or would you ever be vegetarian or vegan? Do you think it is a good idea for hospitals to impose that dietary choice upon patients? What food worked best for you during cancer or other illnesses and could you have gotten by without a bowl of chicken soup?

Shopping List
Are you seeing double from treatment, immobile from surgery, or too fatigued to drive to the store for groceries but tired of asking your friends for favors? Learn how to make your food last longer so that you can make fewer trips to the grocery store. M. O’Connor, a commenter on a New York Times foodie blog offers the following tips, which I have adapted slightly.

1. Buy meat in quantity and pop into the freezer upon unpacking

2. Lettuce: Buy heads not bags, store with bottom end in a bit of water

3. Keep bags of frozen vegetables on hand (healthier than canned)

4. Rice, most dried beans, and pastas keep for ages on the shelf

5. Dried fruits have long shelf-lives, as do most nuts

6. Potatoes, onions, and apples last a while, store in a cool, dry place

7. Wrap hard cheeses in waxed paper followed by aluminum foil

8. Eggs last far longer than the date on the box,purchase many cartons
are a time. Read more about it.

9. Use canned or powdered milk for baking; eat oatmeal for breakfast

10. Keep butter and bread in the freezer, defrosting as needed

Pitfalls
This list contains some pitfalls for young adult cancer patients: you have to be able to afford to buy in quantity, have a large enough freezer, and if you are trying to eat organic or preservative free, your food will perish much faster than conventional food.

Have you needed others to do your groceries while you were sick? What made it go smoothly or not? What is the nastiest thing someone bought you when they did your shopping? (Mine was cozy shack pudding, which I ended up liking!) Have you ever gone without food because you couldn’t make it to the store?