February 21, 2009

Eco Friendly and Affordable Body Care

shampoo

With medical bills, college loans debt, and entry level jobs, most young adult cancer patients cannot stroll into Whole Foods and shell out $39.95 for a 5-oz. bottle of Dr Hauschka’s body moisturizer. But, that doesn’t mean you have to slather your skin or wash your hair with superfund site sludge either.

Beth, the blogger at smartfamilytips, has scoured the extensive Skin Deep Cosmetics Database in search of personal care products that are low in toxicity, affordable, and available outside of the bourgeoisie bodycare belt. Beth’s list includes products available at Target and CVS, and ranging in price from White Rain to Burt’s Bees. An important note that Beth makes is that just because one specific Pantene, L’Oreal, and Maybelline product is on the list does not mean that all of those company’s products are eco friendly.

Another option is to crack open the kitchen cupboard and your fridge. I’ve been using olive oil all winter long to moisturize. I have yet to wash my hair with eggs.

Has cancer made you want to reduce the toxins you apply to your skin and hair? If so, how does it affect your wallet? What brands do you choose to use? Do you ever venture into homemade beauty products?

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February 19, 2009

Grocery Shopping and Cancer

long-line1
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?

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February 18, 2009

Pot Smoking, Snowboarding, and Opting Out of Health Insurance

pot-smoker
Dude
A few years back my twenty-something co-worker and I were bored stiff. We had already played hooky from work 7 times to go snowboarding, smoked through a five-pound bag of pot we kept stashed with the extra reams of paper in the mailroom, blown our paychecks on iPod paraphernalia, pulled three false fire alarms, filed two fake workplace discrimination claims, and photocopied our asses at least a dozen times.

Staring into our Cup-o-Soups, my co-worker had a brilliant idea: “Why don’t you resign from your position, I’ll forget to submit your COBRA papers to the government, and then you can get diagnosed with cancer without any insurance.” Dude, how novel, that sounds like fun.

Fact Vs. Fiction
‘Young invincibles’ is a favorite term used by insurance companies, and perpetuated by journalists, that describes slacker twenty-somethings in stories like the one above, who chose to forgo insurance even when they could afford it. But the problem is the story above is actually fictional, as is the notion that twenty-somethings are a tribe of well-fed slacker who don’t want to waste their money on insurance.

I don’t snowboard, smoke pot, photocopy my ass, or own an iPod. I did, however, without planning, get diagnosed with cancer the week that my co-worker forgot to submit my COBRA papers, leaving me completely uninsured. Believe me it wasn’t by choice. Believe me health insurance is unaffordable, with or without a pre-existing condition. Believe me, young adults want insurance, we just cannot afford it. ‘Young Invincibles’ are not the norm. Here’s what is the norm:

  • 46% of young adults report having medical debt, significantly changing their lives to pay medical bills, or being contacted by collection companies because they are unable to pay medical bills.
  • 73% of employed young adult accept health insurance when it is offered to them, only slightly less than the 82% of adults 30 or over.


The Moratorium

So, I’m officially placing a moratorium on the phrase ‘young invincibles’. It appeared both in the New York Times today and on CNN’s website yesterday. I’m taking a vote on what you think the name should be changed to instead:

A. Impoverished kids who get the SCHIP boot when they turn 19
B. Twenty-somethings whose bottom of the career ladder jobs don’t offer benefits and pay next to nothing so they cannot afford the steep costs of health insurance.
C. Undergrad and grad students who are going to school part-time and working part-time and neither offer insurance.
D. All of the above.

Does the term young invincibles piss you off too? How many young adults do you know who do not have health insurance because they choose not to? How many young adults do you know who don’t have health insurance because they cannot afford it or are already in medical debt?

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February 16, 2009

Zagat Guide To Doctors

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Want to find the best vegan burger shack in town or a late night sushi-karaoke bar? Turn to Zagat. Want to find a good doctor? Now you can turn to Zagat too. WellPoint, one of the country’s largest health benefits companies, is contracting Zagat to create a patient review system of doctors. How egalitarian, how patient powered, how much more can you miss the mark?

Italian Vogue?
This new Zagat system of voting and popularity contests will lead young adult cancer patients (and others) towards making less educated and poorer choices about their doctors. Here are a few reasons why:

1. What if 42 patients give their oncologist a high score because they love the Italian Vogue mags in the waiting room and the friendly smile of their oncologist but don’t know that this doc has four violations pending against her with the state medical board? Zagat is not the answer.

2. What if six patients give their oncologist a low rating because the wait is long and the staff is rude, but they don’t know that this oncologist just flew to MD Anderson last week as the foremost expert in the world on your specific disease type and stage, and presented a paper on a new molecular treatment that has fewer side effects and avoids the need for surgery? Zagat is not the answer.

3. What if a patient on Zagat has extensively researched an oncologist, stating he is the most highly educated in the city in lymphoma care, but the patient is basing this information only on the fact that the doctor graduated from Harvard? Harvard alone does not a good doctor make. Has this doctor published research? Is he or she an active member of the international oncology community? How do they continue to educate themselves? Zagat is not the answer.

Taking Candy from Strangers
If you’re visiting Chicago for the first time and trust a stranger on the street to give you a recommendation for the best pizza in town, the stakes are not so high if their recommendation sucks. But we are talking about cancer, not pizza. You should not take the advice of strangers but rather turn to the most educated, medically astute friends, colleagues, and doctors you know to become your advisors – not a group of joe schmoes on-line. (I talk more extensively about this in the Working The System section of my book Everything Changes.)

I’m not alone in this thinking. Most of the medical ethicists and docs interviewed on the subject in the New York Times agree.

How you do decide what doctors to use? Do you think the Zagat guide is a good idea? Would you use it?

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February 14, 2009

Single with Cancer Valentine’s Day Bash

penelope-gun

What sucks more than cancer?  Being single on Valentine’s Day with cancer.  I might not be there now, but I was for many years.  So I’m throwing the first official Single with Cancer Valentine’s Day Bash on my blog today.

To celebrate, here is part of an interview I did with Melissa Sorenson a few years ago when she was 24 and living with lymphoma.  She told me the story of her boyfriend who we’ll call Daniel, to save the bastard from embarrassment. (Who knows, maybe he has transformed into a nice guy by now?)

Cheer Up Sweet Melissa?

“If I had a message to the men of the world who have rejected women with cancer it would be fuck you!  No.  You’re an idiot.  No.  You’re just selfish.  It’s so pathetic – do these men not think that they could get sick some day too?  It’s just bad karma.  Do they not realize that the next woman they are with could get sick?  Or that their parents might get sick someday?  I guess these men have never had to deal with anyone being sick around them and they don’t want the burden of having to start now.

Five weeks into chemo Daniel had a party.  I was pretty sick but I went anyway.  Around midnight I got this horrible, painful, weird feeling of illness just vibrating through my chest and stomach and legs.  I left Daniel’s party and went to my friend’s apartment to sleep.  I felt so lonely and scared.  I called him around 2 AM, when I thought the party was winding down, to ask if he’d come be with me. He didn’t want to leave the party.  I’m like, ‘Dude, these are like the only times I’m ever gonna ask you to do this.’  He’s like, ‘Can’t you just come back over here?’  I’m like, ‘I can’t sleep in the middle of a party.’  So he just never came.

There was a girl at his party who I just didn’t like.  You know how you get certain vibes?  I’m usually right about these things.  That’s why I listen to myself.  Women do have a way of knowing these things.  I woke up at 6 AM.  I wanted to go over to Daniel’s cause I knew that she’d be there, but physically I just couldn’t get up, I was too sick.  I waited and called him at 9.  I’m like, ‘Who slept over?’  I got it out of him.  I can always get it out of him.  And I was right.  That girl slept over in his bed.  Even his friends who love Daniel and think he’s a great guy are like, he’s a great guy but Mel you’re sick and he’s not doing what he needs to do for you.  A couple of times he called me from bars and I had a hunch that he was out with other women.  He’d invite me along but I think he was trying to cover because he knew I was too sick and would never make it out.

I finally decided it was easier to handle the heartache of ending it than it was to manage the stress of him going out drinking and being with other women.  I finally broke up with him on week 8 of chemo.  I have never been so depressed in my entire life.  Lots of people would write cards to me saying you’re so strong and inspirational for dealing with cancer.  I’d think, no, no, no stop it.  I’m not.  Everyone has their struggles in life.  And I honestly feel like going through love problems is worse than going through cancer sometimes.”

More Dirt?

Do you have any girl or guy bashing, broken hearted or dumped during cancer stories to share?  Any advice on how to ride the waves of being single or divorced or going through hard times with a partner during chemo?  Do share.

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February 12, 2009

Cancer Roadshow

ipod-billboard

The last time I confessed my morbid little day dreams it was a real hit both here and at Planet Cancer, so here I go again:

Confessions

Wondering what to do once you’ve croaked with your iPod, journals, and the IRA account you opened two years ago? If so, you are not alone. I’ve met tons of young adult cancer patients who write and rewrite their wills in their minds – even if death is not imminent. You hear the word cancer and it’s just natural to wax morbid. Sometimes it even feels comforting.

Well, I’ve got a new one. My Uncle Bill died this weekend. He was a fantastic human being, a doctor who taught to med students classes in doctor patient communication, and a prominent clinician whose research on Downs Syndrome changed the lives of thousands of children. (He was buried with a Grover puppet – how great is that!) I was reading his obituary and noticed three Downs Syndrome organizations that people could donate in his honor.

It got me thinking, if I got hit by a bus tomorrow, or if this cancer deal took a turn for the worse, would people know where to donate in my honor? What if they chose some ridiculous cancer organization that was all about pharma and pink ribbons and gave no money to young adults with cancer? That would suck.

Earmark

So I’m going to send this post to my family to make it known that should I step off a curb tomorrow when the #147 is flying along Sheridan Road, this is where I’d like people to donate in my honor: Planet Cancer, and earmark the funds especially for their Advocacy Roadshow program that will educate physicians about detecting and diagnosing young adult cancer patients at earlier, more treatable stages. How many of us struggled to get diagnosed because we were told by doctors we were too young, we must have pulled a muscle in yoga, or were hypochondriacs? Never again. Maybe I shouldn’t wait for death – perhaps I should forgo Chanukah presents and have my mom and dad send the money to Planet Cancer instead.

Do you let your mind wander to thoughts about your death, your funeral, or wills? What do you do with the morbid little nasty thoughts that pop into your mind? What organizations would you choose to have people donate to in your honor?

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February 10, 2009

The War Analogy

Ric Gribenas is a brilliant sound and installation artist. While writing my book, I met with him in his art studio to record a conversation about his experiences of living with Hodgkin’s in his twenties. What I remember most was how he vented in his bedroom with his door shut while blasting Billy Bragg, and his take on the war analogy:

Punching The Clock

“Illness is often viewed as a battle, a war, a sad, and tragic thing. I’ve replaced the war analogy with a work analogy. Illness is work for me. Cancer is my second job. I have scheduled times I have to go to the hospital. I go. I do the work. I come home. It’s hard work but cancer has become a part of my everyday life and I certainly don’t think of my life as a battle or war being had.

The cancer analogy to war sets up patients as having these terrible things inside of us. But in my particular case, Hodgkin’s is genetic, so it is very much a part of how my body decides to operate. My body is creating these cells as part of its natural path, so the war analogy doesn’t really work. Psychologically, I don’t think the war analogy is very helpful either. Potentially it could help someone who has a short eight-month bout of cancer and goes into remission and never comes out. But for anyone who has to deal with cancer as a chronic behavior, with repeated entrances into illness, the war analogy fails because the illness is a lot more complicated than just fighting one battle and winning.”

Wit

I agree with Ric, the war analogy doesn’t work for me. When I was first diagnosed, it freaked me out that my cancer didn’t feel like something to fight against. In a series of dreams, my cancer was pearls and gems dangling from canopy beds and hung on long clothing lines. I always awoke feeling that my cancer was painful and unwanted, yet majestically important. These dreams have long vanished, as has the royalty of this malignant routine. But, I still feel that cancer is a part of my body to work with rather than fight against. Cancer is smart. I want to work with its intelligence so I can outwit it.

Do you have images for how you view your cancer? Is it a war, battle, fight? Has your perception of how you describe your cancer changed from when you were first diagnosed?

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February 07, 2009

Save Bucks On Your Rx Drugs

drugstore

I read a fantastic article in the New York Times, by Lesley Alderman, about how to save money on prescription drugs. I’ve slash out the doughnut hole lingo and other senior factors and created a summary version that relates more to 20 and 30-somethings.

As part of the research for my book, I’ve done a ton of research on resources for discount drugs, and other forms of financial assistance for young adult cancer patients. On the right column of my blog page, click ‘Download Chapter One’, underneath the cover of my book. The resources section at the end of this free PDF is loaded with my finds.

Snail Mail Drugs
If you have health insurance, call the 800 # on your card or search on line to see if your company offers a drug mail order system. Many do. This service tends to be used for prescriptions you take on an on-going basis. For example I pop a levoxyl every single day, and will for the rest of my life. I could get these sent in the mail from my insurer at a huge discount. This service, however, would not be used from a temporary drug, such as an antibiotic for an infection. The paperwork to sign up for this service is relatively simple, so what the hell am I waiting for? Bulk levoxyl here I come.

Brainstorm With Your Doc
To your next appointment, bring a list of your Rx’s or the actual bottles. If you have health insurance also bring a copy of the list of drugs your insurer covers – this is called a formulary. You can get it by calling your insurance company or visiting their website. Then ask your doc the following questions:

  • Is there any duplication of medications – are they all necessary?
  • Have they all been effective and do you need to remain on all of them?
  • Are you still on the correct dosage?
  • Is there a generic version that could be used instead? (Be sure to ask about generics anytime you are given a prescription.)

Comparison Shop
If you are paying out of pocket, check out Destination RX to shop around for the best prices on prescription drugs. Times reporter Lesley Alderman also suggests trying the local or mom and pop drugstores in your area too. Sometimes they have surprisingly lower prices.

No Insurance or Low on Cash
If you don’t have insurance visit the Partnership for Prescription Assistance, that has a database and online application for free prescription programs for low-income, uninsured, and underinsured patients. Yes, the organization irritates the hell out of me because it is a non-profit group run by pharma to help those of us who cannot afford their drugs, and they are likely just getting a tax deduction from it all plus good PR, but I guess we take what we can get, right?

Are there other ways that you have tried to cut your Rx costs?  What was the most you have ever paid for a prescription?  (I once got a shot that cost $2,000.)  Do you ever get Rx by mail?  If so, has it saved you money?

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February 04, 2009

Cancer Test Kitchen

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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?

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February 02, 2009

Ten Cancer Truths

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I spent five hours sitting on a dumpster dived sofa in an apartment in San Francisco, transfixed in conversation. I was interviewing Wafa’a, a lymphoma patient in her early twenties, for my book Everything Changes. We ranted about parents, dating, and loneliness. At the end of our rapid-fire conversation, Wafa’a clearly, slowly, and eloquently stated a list of pointers she would give to newly diagnosed patients. I thought I’d make my own list too:

1. Climb. If it makes you feel good to climb a mountain or run a marathon with cancer, fantastic.

2. Cry. If you cry yourself to sleep and cannot scrape your depressed head off the pillow in the morning, that’s pretty normal too.

3. Reality. Don’t believe the hype that we can choose whether or not cancer is going to get the best of us. Cancer is not an attitude. It is a disease.

4. Smash. Put one foot in front of the other, roll with the punches, yell, cry, and break things as needed. (I recommend smashing a dozen eggs in the shower: cheap, satisfyingly messy, yet easy to clean up.)

5. Ask. Ask for help when you need it from people who are good at giving it.

6. Learn. Make educated choices while realizing there is no guarantee that the right choice will yield desirable results.

7. Love. Love those who support you and take a break from people who just don’t get what you are going through.

8. Science. Get constructively pissed off at the system, but stay curious about science.

9. Change. Don’t work too hard on using your cancer experience to change your outlook on life; it will do that all on its own. (And if it doesn’t, don’t worry, some of us prior to cancer already had great outlooks that didn’t need much changing.)

10. Vulnerability. Create your own definition of strength and let it change as needed. For me, strength comes from recognizing that I am vulnerable.

What are some cancer truths, or pointers, you would give to newly diagnosed patients?  Are there any of mine that you disagree with?

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