Everything Changes - The Guide to Young Adult Cancer

Bigger isn’t always better.  More isn’t always better.  Louder, snazzier, cuter, more prolific isn’t always better.  But I think smarter IS always better.

I was recently asked how I decide what organizations I donate to.  A few years back the head of the American Cancer Society blew me away.  He said increased access to health insurance could reduce cancer mortality rates just as much as scientific discoveries.  Who cares if we find cures that nobody can afford?  Hundreds of thousands of Americans die because they cannot afford proven cancer treatments. This doesn’t take complex microbiology to fix. All we need are better public policies.

I’m only donating to organizations providing education and action in support of the public option.  Surprisingly, no cancer organization is doing this work in a serious manner.  So I’m donating time and money to orgs supporting real healthcare reform like Campaign For Better Health Care, and Health Care for America Now.  Moral: Don’t just donate, donate smartly.

On Monday’s Stupid Cancer Show, we interviewed Diana Balma, Executive Director of Stand Up to Cancer.  These folks aren’t just dishing out cancer research grants the way most foundations do.  Rather than encouraging competition between scientists working in separate labs, who don’t share critical information, SU2C is creating and funding dream teams of scientists who collaborate.

Throwing $73 million at cancer research doesn’t impress me.  But giving $73 million to cancer research in a way that changes the model for how research is conducted - that’s very impressive.  Moral: Don’t just do research, do research smartly.

Yesterday I learned Planet Cancer (a young adult cancer organization) is merging with the Lance Armstrong Foundation.  Many organizations duplicate services, raise money but don’t prioritize their budgets, promote their name but have no useful programming, or are working in a vacuum.  Why?  People’s egos and desire to do good sometimes gets in the way of what is useful.  Not Planet Cancer.

Combining the clout and resources of the Lance Armstrong Foundation with Planet Cancer’s know-how in serving young adults is a super smart move.  Moral: Don’t just run an organization, run an organization smartly.

Who do you donate to and why? What are some of the smartest projects in the cancer community? Do you agree that smarter is better?

Read the Making A Difference section of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more smarts about making change.

I think there’s an expectation that having cancer is going to make my work, relationships, or goals in life more meaningful or important.  But why?

Shannon is going to be a guest on tonight’s Stupid Cancer Show about cancer and the environment.   (He’s an environmental lawyer for the Natural Resources Defense Council).   Preping for our interview, I asked – in my best Terry Gross voice – “Did meeting your wife, a cancer patient, reinforce your commitment to your work on the environment and healthcare outcomes?” His answer: “No.  Not really.  I cared about this work to begin with.”  Reason #210 why I love this man.

I guess the assumption is that we’re all just a bit too lazy, unkind, uncommitted, shallow, or careless in our lives and need cancer as a wake up call.  But, I think I had a pretty meaningful life before my diagnosis, just as Shannon had a pretty great commitment to public health issues before meeting me.  I’m mostly happy for people who’ve gotten more meaning in their lives from cancer.  But I’m also a bit sad for what their lives must have looked like prior to cancer if they needed this disease as a makeover.

The burden is on cancer patients to live profoundly meaningful lives because we’ve seen the light.  Be shouldn’t we all strive to lead meaningful lives, be good to our neighbors, smell the roses and help old women across the street whether we’ve had cancer or not?  Just turn on the news, walk down the street, empathize with anyone who has lost something or someone.   Wake up calls are everywhere.

It was a relief for me to hear Shannon say that my cancer was not a wake up call for him.  Call me crazy, but I’d like to think that the greatest assets I have to give him are not two malignant tumors in my neck.

Was cancer a wake up call for you?  If so, in what ways?  If not, why not?  Do you ever feel like there is an expectation that you should have become a more whole or better person because of your cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Greg and other  young adult cancer patient who said they’d choose to get cancer again because of the positive change it made in their lives.

My healthcare motto as of late is quit bitching and start thinking.  Yes, the health care system sucks and we need to vent about it big time.  But, we also need to learn how the system and its players work so we can use them to our advantage.  We cannot do this if we think patients are never to blame.

In my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, I write a lot about how I and other young patients have wrangled the system, fought like hell, and got the care we needed. You can’t win these battles by only thinking like a patient; you sometimes have to think like a doctor.

Last week, Kevin MD posted about patients who annoy their doctors.  A commenter complained about cancer lit that suggests patients bring a friend or family member to appointments because it turns the appointment into “a side show.”  Instead of getting in a defensive-patient tizzy, brewing up an us patients vs. the rest of the world rivalry, I thought I’d try to see if there was value in the comment.

I want my doc to absorb my medical history, perform a good hands on exam, and answer my questions, all in 10 minutes. So maybe the maxim shouldn’t be ‘bring a friend to appointments’ but bring a friend who is medically astute and a skilled communicator. Is it really helpful to have a flighty chatterbox with me in my appointment, who will distract and annoy my doc?  I think not.

Tonight on the Stupid Cancer Show, Matthew Zachary and I will be interviewing Wendy Harpham MD, a mom of three and general practitioner diagnosed with cancer at 36.  Her great new book, 10 Seconds to Care: Help and Hope for Busy Clinicians, helped me better understand the pressure cooker in which my docs work and the ways in which I can actually make their jobs easier.  Considering that their job is to save my life, I’d like to help them all I can.

Are there times when empathizing with your docs works to your advantage?  Do you ever read doctor blogs?  Have you ever brought someone to an appointment who actually made the process more complicated rather than easier?

For more stories about how to be an effective, proactive patient, check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, available wherever books are sold.

Mark your calendars. Monday, June 8th, 9 PM, EST for the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We will have three experts on air focusing for an entire hour on cancer and sex!

I got a great email today from a blog reader who was writing me about some issues down there – mostly feeling like she is popping her cherry every time she has sex with her spouse. These down and dirty sex issues are real problems and we have few forums in which to talk about them and receive expert advice.

So, over the next few weeks, I’m going to request that you leave in the comment section of my blog questions you would like to have read on air. Remember that there is an anonymous option in my comment section, so nobody will ever know who you are and you have carte blache to ask whatever questions you like.

Be as graphic, real, and hardcore as you need to be. Sage Bolte is one of the experts. I interviewed her in my book Everything Changes and believe me – NOTHING is too graphic to discuss with this woman.

We all look forward to reading and hearing your questions!

Sexy Librarian
If you’ve been reading my blog or my book you know I’m a total geek for hardcore legal resources and factual information. (One of my alter egos: sexy cancer law librarian.)

Last month, a family member was in the hospital and I was seriously displeased with the administration. I called a meeting and sat down with the CEO of the hospital and his posse and read them a riot act, peppered with a few key nuggets of healthcare legal knowledge. Not only did I get what I wanted but, when I left they all said, “We had no idea you were a lawyer.” My reply “I’m not. I’m a cancer patient.”

My motto is ‘Think, question, and shout when you need to.’ You can do this quite effectively with a little bit of legal knowledge under your belt. So, stop thinking of healthcare law as a nightmare, and start using it to your advantage.

The Stupid Cancer Show
Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about recent updates to the law that affect young cancer survivors. Our great guests are Joanna Morales, Director of the Cancer Legal Resource Center and Paula Pearlman, Executive Director of the Disability Rights Legal Center.

Do the words “healthcare law” excite you or make you want to run? Have you ever stated your rights or referred to a law in a medical setting? What were the results? What legal questions would you ask Paula and Joanna?

The Flat Line
Most of us were either not born, sporting pampers, or wearing size 6X bell bottoms and Holly Hobby dresses when Nixon declared war on cancer. Since then, five-year cancer survival rates for peds and older cancer patients have risen steadily. However, survival rates for young adult cancer patients have seen zero improvement.

One of the culprits is our lack of access to health insurance (see my young invincibles schpeil!) But, another huge factor is our lack of access to clinical trials. Clinical trials study new and promising cancer treatments, providing access to cutting edge medication well before they are released on the market. Ready for another shocking statistic? Sixty-percent of pediatric patients participate in clinical trials. Yes, 60%. Only 1-2% of twenty and thirty-something patients participate in clinical trials.

Only now is the first ever large-scale clinical trial being designed to study a particular cancer type in young adult patients. This means that all of the cancer drugs that are infused or beamed up into our 20 and 30-something cancer ridden bodies have only been studied on folks the age of our parents and grandparents. Why is this a big deal? Their bodies are drying up, they have no periods, different hormone levels, and are experiencing middle and end of life health changes.

Life Saving Juice
While researching my book Everything Changes, I ate up Dr. Archie Bleyer’s study on barriers to clinical trial participation for young adult cancer patients. It may sound dry and boring, but this is actually the juicy information that can help extend our lives.

Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about Young Adult Clinical Trials 101 with clinical trial experts Deborah Vollmer Dahlke and Ellen Coleman.

Have you ever participated in a clinical trial? What was that like? Have you wanted to participate in a clinical trial but it didn’t pan out for you? If so, what were the obstacles? What questions about clinical trials would you like me to ask our guests on the show tonight?

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?