Everything Changes - The Guide to Young Adult Cancer

Seems like alternative medicine and diets never get rational airtime. Some people slam them, writing off as quackery anything non-allopathic. Others become super cheerleaders letting alternative medicine and diets engulf their identity in a creepy almost cult like fashion. Neutral patients are left in the middle with little rational, scientific based information nor sensible peer support conversations about “natural” health and healing.

On discussion boards it seems everyone’s either adamantly defending products and regimens with absurd anecdotes (quite different from sensible coping strategies) or they’re bashing the hell out things. Few readers learn anything other than propaganda for or against.

I’m a big fan of patients being proactive, whether it is about alternative or allopathic care. That’s why I felt so disappointed last week when I saw on a facebook thread patients discussing gluten-free diets. One told the other to try it, because it could cause no harm.  The sentence reminded me of the Life Cereal slogan: “Ask Mikey, he’ll try anything!”

Nothing is without possible side effects, even simple diets.If I were going gluten-free here are some things I’d consider: 1. Stress. A study came out from Columbia University about the economic burden of gluten-free food. Do I have the time or money to accommodate a new diet? 2. Changes in diet can significantly alter a person’s nutritional profile. A lot of gluten-free substitutions are high in fiber. Diets high in fiber have in the past caused me horrible cramping and intestinal bleeding, followed by extra doctor’s visits, labs, and more medical bills. 3. Different foods impact the absorption of my thyroid hormone pill, which is used as therapy to prevent my cancer growth. This is a serious consideration.

There might be good solutions for each of these consequences. I’m not saying patients shouldn’t engage in alternative medicine or new diets. I’m just saying it’s naïve for us to think they can’t cause harm, especially in patients who are critically ill.

What are smart tips, lessons learned, and warning signs you have experienced with alternative medicine?  Have you ever had negative side effects from herbs or diets? Do you talk to your doc about the non-allopathic care you receive?  (No propaganda comments for or against products or diets please - just smart helpful info.!)

For a check list of smart questions to ask alternative medicine practitioners, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

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?

Ina, Martha, and Nausea
This week on the Stupid Cancer Show, I interviewed Karen Jung author of Healthier Eating and Living with Cancer.  I’m a big fan of Ina and Martha and the aesthetic of their presentation.  Karen agrees that visual appeal can make it or break it with cancer in the nausea department.  She suggests experimenting with the colors of plates against the color of various foods, recommending white plates for brightly colored vegetables.  She also recommended taming the olfactory-gag effect of food by cooking with the kitchen door closed (if you have one) and allowing food to cool before serving.

Vegan Cancer Girl Scouts
Vegan is the new black.  Everybody is doing it. Suddenly the oh-so-seventies rage of juicing and raw foods is hot among young adult cancer survivors and pedestrians alike.  But Karen’s recipes aren’t about beet juice margaritas for dinner.  I was curious why she chose standards instead:  During active treatment, patients often cannot digest abrasive raw veggies or potent green shakes.  Karen tested her recipes on scores of survivors in radiation treatment and chemotherapy, and there is a reason why they serve Jell-O in hospitals – sometimes it is all you can get down.

On The Page
She had lots of great ideas when I talked to her but when I read her book they were not mentioned. The cover is beautifully designed, but some of the suggested foods like hot dogs on hoagie buns didn’t shout cancer, nor would I need a cookbook to make scrambled eggs.  I’m not a nutritionist but the antioxidants she notes that come from two slices of cheese in a grilled ham and cheese sandwich seem like a snippet of nutritional information lifted out of context.  The order of the book is also confusing; cookies listed after appetizers and before meats, while vegetables are the final section.   My conclusion, if I’m hankering for Hungarian goulash, I’ll reach for the Joy of Cooking instead.

What were your favorite cancer foods?  How did you hack the sight of food when you wanted to hurl?