Everything Changes - The Guide to Young Adult Cancer

Studying the link between cancer and the enivornment is complicated.  Richard Acker, a young adult colon cancer patient and environmental attorney explains in my book, Everything Changes, the kunundrum of studying the hundreds of chemicals found in the blood stream of the typical American:

“Each chemical is thought to individually pose a minimum risk, but what if you have 150 things that are each individually minimal risks, but perhaps 3 or 4 of them together might cause a greater risk than we have ever learned about? It is difficult to isolate variables of chemical exposure because we are exposed to so many chemicals every day…

“Part of the reason they don’t do the research on cancer and chemicals is because the chemical companies don’t really want them to. And the federal government is not particularly enthused either about researching things that could cause economic impact if they were withdrawn or restricted. But also it is partly just the difficulty. You do the math. If you have one to two hundred chemicals, in order to research the potential effects of the combination of each of those, if you take a pair of every three or four of those chemicals, there would be hundreds of thousands of potential experiments. It would be totally cost prohibitive. And to do it on a large-enough scale where you could get statistically significant results, how could you do that? It would be extremely difficult, so I don’t totally blame industry or the government for not doing it. ”

Richard’s explanation is pragmatic and realistic.  So as a cancer survivor, patient, or someone generally concerned about their cancer risk factors, what do you do with this complex equation?  How do you begin to take practical steps to protect yourself from environmental carcinogens?  Is it even worth it?  Where do you draw the line between common sense reduction of exposure to toxins and living in a bubble, like Julianne Moore’s character in the 1995 movie Safe?  (A creepy, fantastic, and disturbing film.) How do you begin to parse out real information and practical, affordable solutions from greenwashing and/or costly, time consuming eco-trends and eco-tips?

The answer to these questions are different for everybody.  In a forthcoming series of blog posts I want to share with you some of the habits I have adopted over the past few years to reduce my exposure to carcinogens.  What is practical and affordable for me might not be for you.  My habits might seem too stringent or too weak.  Rather than setting forth a prescription for reducing your contact with carcinogens, I just want to give you a glimpse inside my life so you can try on for size what you wish.  Stay tuned for more posts in this realistic series on Reducing Your Exposure to Carcinogens.

For more info on cancer and the environment, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

As an oncology patient, it is easy to think that cancer is the center of the scientific and medical universe.  But as Laurie Edwards describes in her new book, In the Kingdom of the Sick, “Now more than 133 million Americans live with chronic illness, accounting for nearly three-quarters of all health care dollars.”  I believe the cancer community can learn a lot from patients, advocates, and activists living with other types of disease.  So, I was thrilled when Laurie wanted to interview me on this topic for her new book, which describes through research and stories the social history of chronic illness in America.

Looking back to AIDS activists in the 1980s and 1990s, I am astounded by the efficacy of their political action.  And what’s more, their illness was considered a gay disease.  If you think it is hard being a cancer patient advocating for  oncology research in the twenty-first century, try being a gay man with AIDS in the 1980s when you were blamed for your disease and seen as a physical threat to the population at large.  Amid this social climate, the AIDS community was still incredibly successful in their fight for research funding and access to treatment and care.

In America, heath care and disease management are policy issues.  The AIDS community knew this and they were extremely strategic and savvy in their fight to obtain funding for research and care.   But policy is a dirty word in the cancer community.  I have a hard time finding any cancer advocates or directors of organization willing to talk to me about the government  policies responsible for access to cancer research, care, prevention, and treatment.  (This is often because they are mistaken about the constraints of non-profit status and believe that they are not allowed to get involved with any political or policy issues, which is largely incorrect.)

The cancer community’s advocacy tactics are waged mostly through consumer driven battles rather than by policy or political fights, and our engagement focuses on individual responsibility instead of community action.  We ignore how to leverage our political strength to solve big problems in the cancer community.  I can hardly think of another advocacy group in the United States that has as many constituents as that of cancer survivors and their friends and families.  Clearly, we can get our loved ones on board to sponsor us in walks and races.  But could we get them on board to put pressure on their congressional representatives to guarantee access to chemotherapy for every American who needs it?  We don’t know because we have barely even tried.

If you want a different take on how an organized community can tackle their health care problems, start to learn about what AIDS activists were doing in the 1980s and 1990s.  Spend an hour or so reading ACT UP’s historical timeline documenting the AIDS movement beginning in 1987.  It is a pretty astounding read.

Also be sure to check out In the Kingdom of The Sick, by Laurie Edwards, which is being release today and available wherever books are sold.

Thyroid cancer diagnoses rates are increasing, especially among young women.  Many thyroid cancer patients undergo radioactive iodine treatment, a.k.a. RAI-131.  I have done so twice and learned along the way about how to cope with the seemingly bizarre low-iodine diet.

When I was going through preparation for radioactive iodine treatment, the list of permitted foods on the low-iodine diet seemed grim.  Low-iodine diet cookbooks only made me feel worse; I am simple, lazy cook, adverse to complicated recipes and substitutions.  Plus, I didn’t want my shopping lists, recipes, or meals to remind me that I was on a freaky diet and a young adult suffering from thyroid cancer.

What worked best was to prepare foods and recipes I already liked and normally consumed that also happened to fit into the diet.  I was surprised how many there were.  I’ll share a few in upcoming posts, but my favorite were roasted vegetables. These easy tips will give you a lot of different dishes from this one simple cooking method:

ROASTED VEGETABLES

* Before roasting your veggies, check with your doctor to see what vegetables you are allowed and if you can have olive oil and NON-iodized salt.  Diets can vary from doctor to doctor so be sure to ask!

* I particularly liked roasted carrots, asparagus, sweet potato, and butternut squash for the bright color and flavor they added to this often bland diet.

* It’s boring eating mixed roast veggies meal after meal, so I cooked and ate each kind of veggie separately: Roast carrots at lunch, roast asparagus at dinner.

* Roasted carrots really satisfy a sweet tooth craving.  They’re no substitute for chocolate peanut butter pie, but they’ll help get you through.

* Parsnips, zucchini, mushrooms, beets also roast well.  And, asparagus tastes great with a squeeze of lemon!

HOW TO ROAST

1. Wash your vegetables and dry very well.  (Extra water on your veggies will prevent the oil from coating well and you won’t get as good of a roast.)

2. Cut your pieces in uniform sizes so they roast evenly.

3. In the biggest bowl you can find, toss vegetables with olive oil and NON-IODIZED salt. (Check with your doctor first to make sure you are allowed non-iodized salt.)   Tossing in the biggest bowl possible really helps give an even and thorough coating of olive oil.

4. Place roasted veggies on a rimmed baking sheet or in a shallow baking dish.  And bake in the oven at 400.

5. Cooking time depends on the vegetable and how thickly they are sliced.  Cook until very tender.  Taste a veggie.  If it melts in your mouth and makes you smile, it is done.

Read more tips on day to day life with thyroid cancer in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.