June 16, 2009

Best Support from Friends and Family


When I’m feeling sick, scared, or overwhelmed by my health, I don’t want friends or family bullshitting me and telling me that everything is going to be fine. It only makes me feel worse.  In fact it makes me want to smack them.

I got a facebook message today from the wife of a young adult cancer patient whose husband is going through possible recurrence.  She said all she can do to support him is tell him she loves him and is there for him. I think she is doing the absolute right thing by being simple, honest, and real.

My friend Lori Hope wrote a fantastic and well researched book called Help Me Live: 20 Things People with Cancer Want You To Know. On the list is “Hearing platitudes or what’s good about cancer can trivialize my feelings.” Kudos to that sentiment.

I totally understand the temptation to want to make things better for someone else who is going through the ringer.  I experience this anytime someone I love is down and out.  Of course we want to fix it.  But let’s be real.  Shannon, Lisa Friedman, and my mom and dad are not going to take my cancer away.  (I’ve hired good doctors to try to do that instead.)   What they give me and what I want is simple, honest support.  They tell me they love me and understand why I’m afraid.

A bit of pink wine and really good escapist DVDs can make a huge difference in getting me through the hard times too. (Six seasons of The Wire got me through this past February and March – thank you Avon and Stringer Bell). But best of all is surrounding myself with people who can be honest with me in the face of fear.

When you are having a hard time, what do you most want to hear? Are you comforted or agitated by someone telling you that things will be fine? Do you spend more or less time around some people because of how they respond to you when you are having a hard time?

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June 15, 2009

Kairol’s Essay On Public Radio


Listen this week to me on the radio talking about how cancer, and my lack of health insurance, made me into an excellent liar. You can hear it this week online too by visiting the home page for The State We Are In and clicking on “This Week’s Show” next to my picture. Mine is the third story. It is about half way through the show.

A few months ago I got an email from a producer at Radio Netherlands Worldwide. “Do you have any good health insurance woes you’d like to craft into an essay for our international radio program, The State We’re In?”

*Do I?* Are they kidding? What young adult cancer patient in the U.S. doesn’t? The week I was diagnosed with cancer, I also learned that my former employer forgot to submit my COBRA papers and I had no health insurance. Here is where the lying part comes in.

My radio essay includes cancer diagnosis, banana milkshakes, sexual favors, lying to COBRA officials, and James Bond. The producers threw down a crazy techno track to it all and voila…. Have a listen. I hope you like it.

If public radio asked you for a good story about young adult cancer and health insurance woes – what would your story be?

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June 14, 2009

Telling Your Kid You Have Cancer


I have yet to figure out how Wendy S. Harpham, MD, FACP manages her life as a doctor, cancer patient, author, and mom of three kids. She’s a super warm, kind person too.

In the parenting section of my book Everything Changes, I recommend her award-winning book When a Parent has Cancer: A Guide to Caring for Your Children which comes with the kid’s book Becky and the Worry Cup. (She’s the author of many other books too including The Hope Tree.) I asked Wendy to guest on my blog today about talking to kids about your cancer:

“My children were 1, 3, and 5 years old when I was first diagnosed with lymphoma. I’ve been in and out of treatment ever since. Since I didn’t get well (and I didn’t die), I was stuck dealing with the double challenges of kids and cancer. Here are my top two tips for raising healthy children When a Parent has Cancer:

1) Establish and maintain open lines of communication. Studies confirm that even when parents try to keep their illness a secret, children know something is wrong. And the fact of the matter is this: Children WILL draw conclusions based on what they are seeing and hearing, and what they know.

Open lines of communication create opportunities every day for adults to guide children toward accurate, yet healthy and hopeful interpretations of the events, and toward adaptive coping skills.

2) Always tell the truth, couched in love, hope and support. Sons and daughters need to be able to believe their parents in order to grow up into adults who, in turn, can trust others. With the added stress and uncertainty of illness, being unfailingly honest gives children buoys of assurance in a sea of uncertainty.

Whether parents mean to or not (and whether they believe it or not), to lie to children is to say, “Dear, I don’t think you can handle the truth.” Conversely, by telling the truth, parents send children a powerful message, “I respect you. I believe you can handle my illness. You can handle the truth.’” What better way to build a child’s self-esteem?

The greatest gift we can give our children is not protection from the world, but the confidence and tools to cope and grow with all that life has to offer.”

How long did you wait between when you were diagnosed and when you told your kid? Do you think your kids knew something was up? How did you explain it to them? Did you brainstorm much about what you would say, or did you kind of wing it? How did the conversation go?

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June 12, 2009

Widening Your Cozy Cancer Community?

Being a freak in the dating world, wondering how long our futures will last, wresting with fertility, interrupting our work lives, our school lives.  Young adult cancer patients aren’t the only ones who get to lay claim to this nasty package of dilemmas.

I get incredible emails from patients who have read this blog and my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. These emails are not just from cancer patients but people who are living with cystic fibrosis, endometriosis, multiple sclerosis, diabetes. Our diseases are so different, but the similarities of our lives are astounding.

Yesterday, on the New York Times Well Blog, Tara Parker Pope had an incredible slide show called Voices of Cystic Fibrosis. Check it out. It reminded me how much I can learn by expanding beyond the little shell of the cancer community.

There are other people out there our own age who get what it means to be a virgin because nobody wants to sleep with the sick girl, or who understand all too well how to tactfully enlighten employers about the Americans with Disabilities Act.

It makes me wonder if we limit ourselves too much by hanging out in the comfy cancer world. A lot of young cancer patients live in small towns where there are no cancer happy hours. So what if you go have a beer with the guy at school who has diabetes? A lot of us are struggling with health insurance or medical debt. So would young adults have more political power to advocate for change if we hooked up with other disease advocacy groups?

Do you read this blog and have a disease that is not cancer?  If you are a cancer patient, have you connected with other young adults who have different diseases?  What was it like?  What do you think about opening up happy hours, support groups, radio shows, and other young adult programming to people who are survivors of diseases other than cancer? Or, am I getting too kumbaya? (I have obsessively been watching the I’d like to buy the world a coke commercial lately).

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June 09, 2009

The Perfect Young Adult Cancer Program


I’ve searched the far corners of the young adult cancer world. If pressed to crown a queen, I’d place the tiara firmly on Heidi Adam’s head.  She’s the founding director of Planet Cancer.  When Heidi speaks, people should listen.  So listen up to what she wrote today:

“Yesterday I attended a meeting sponsored by the LIVESTRONG Young Adult Alliance to take a first stab at drafting guidelines or standards for institutions wanting to launch Adolescent/Young Adult Oncology programs. Now I want to ask you: WHAT DO YOU THINK AN AYA PROGRAM ABSOLUTELY HAS TO HAVE TO REALLY MEET THE NEEDS OF YOUNG ADULT PATIENTS? Bring it on–from the smallest detail to the biggest concept, give me your wish list for an AYA program so we can make it happen!”

Thank you Heidi.  My motto as of late is “quit bitching and start thinking.”  Think about where you have been left high and dry by the cancer community or your medical institutions. Translate them into truly useful suggestions for Heidi and leave a comment below. 

What changes need to happen? Where did you want support but did not find it (childcare, financial, health insurance navigation, access to clinical trials, a place to study or work at the hospital, info about fertility and sex)? How could your cancer experience have been made easier? What programs have you participated in or services have you received that were fantastic and you think should be replicated?

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June 08, 2009

Talking About Sex and Cancer


One of the greatest parts of writing my book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, was having complete strangers talk to me about the intimate details of their sex life. Here’s Mary Ann, from Chapter 9 ‘It Girl’:

“From my head to toes, I have been affected by cancer. Every part of my body has changed. I don’t feel sexy or female. I feel mutilated. I feel different, like an it. Feeling attractive goes into and is combined with feeling sexy, which might put you in the mood. Usually, I don’t feel like I’m in that mood. When you have been married for nine months, people think you are making love every night. I feel like we should be engaged in it all the time, and we are not.”

As young adult cancer survivors, we’re on hormonal roller coasters, missing body parts, wrestling with anxiety, reacting to medications, treatments, and transplants, and managing our ever fluctuating self image. These are not the easiest ingredients for a smooth sex life and it’s time we started talking about it and figuring out how to make sex work better for us.

Tonight, Monday, June 8th, 9 PM, EST is the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We’ll have two sexperts – Sage Bolte and Sueann Marks, on air focusing for an entire hour on cancer and sex. We’ll also be giving away to listeners three free copies of The Guide To Getting It On.

If you have any questions you want asked on air about sex and cancer, it is not too late to leave them in the comment section of this blog post (remember, they can be anonymous). And thanks to you who have already sent me your juicy questions!

What have you always wanted to ask about sex and cancer? Have you ever talked to a sex therapist before?  Have you ever brought up sexual issues with your docs?  How did they respond?  Were they educated, informed, embarrassed?

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June 05, 2009

Cancer Vacations


Many survivors my book marked the end of treatment with a trip. Some expensive, most on a shoe-string. Some foreign, others just a refreshing get away to see family or friends. If your thinking of adventure travel, Defy Adventures, a new adventure travel organization for young adult cancer patients. I recently interviewed Micheal Lepage, the founder.

Did you travel prior to having cancer?
No. Beating cancer spurred me to see the world. I have since backpacked Europe, trekked dormant volcanoes in New Zealand, camped in the Grand Canyon, and climbed to the top of the Cristo in Rio, where I asked my wife to marry me.

What were you hardest and most hopeful memories of treatment?
I’d just finished my 12 chemo treatments. Excited to return to school, finish my last semester and graduate, I dragged my parents, siblings, and girlfriend to my appointment. The news was the exact opposite of what I expected; I hadn’t responded well and I needed another four treatments. I felt crushed, embarrassed, and annihilated.  My most hopeful memory was a moment of clarity while sitting quietly in nature. I had one more treatment to go and felt sure that my cancer was gone and it was over. My next scan was blank and I was right.

What advice do you have for survivors after treatment?
Take it ridiculously slow. Here’s my formula; Take the total months of cancer treatments, divide it in half, and add 3 months. Plan for that much time to get back on your feet. If you get there sooner, great! But don’t push for it.

Talk about your new organization Defy Adventures.
We help young adult survivors reclaim their lives after cancer. We whisk them off to a remote part of the world to climb a serious mountain in Peru or survive in the jungle. Our expeditions create community, build self-confidence, inspire, and are a total blast.

So, have you taken any memorable trips after your cancer care? Were did you go? Did you get the O.K. from your doc before you traveled? Any tips for survivors wanting an inexpensive vacation? After treatment my friend Lisa Friedman and I went on a shoe-string trip to Costa Rica where we stayed in little beach villages with almost no tourists.

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June 04, 2009

Cancerversaries, Blogversaries


My surgery was on Halloween.  I wore a tiara and red heels to the hospital.  That’s easy to remember.  Ask me the date or year of my diagnosis and I have no idea.  Cancer has fried my inner calendar.

Daily on Planet Cancer and Facebook I see young adult cancer patients celebrating their cancerversary. My cancerversary doesn’t mean much to me.  Maybe it’s because I’ve never been cancer free so there is no end with which to book mark the beginning? Nah, I think  I’m just more focused on the day to day than the milestones.

Yesterday, I wondered how long ago I started this blog.  I looked it up.  June 3rd.  Exactly one year.  So, I want to dedicate this post (can you say Delilah?) to my fantastic friend Lisa Friedman.  She hounded me for about two years to start a blog.  I was totally resistant.  What would I have to blog about everyday?  I found her nagging irritating and she probably found my excuses pathetic.

Well, Lisa, a year later I’m addicted to blogging and I thank you.   I have more to blog about than my time allows: I’m finishing posts and series on medical debt, cancer and parenting, patient bills of rights, and  the taboo topic of cancer and domestic violence.

Thanks to all of you readers for your brazen comments and sharing your vulnerable experiences.  Without you this would be a one sided conversation and instead it is so much more.  Happy blogoversary to us all.

Do you celebrate your cancerversary?  What would you like to see me blog about during year number two?

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June 02, 2009

Calm During Crisis


Wedding season has officially started, so I’ll tell you a little tale about my own wedding.

Shannon and I were slated to get married in an old factory in Pittsburgh. (We love urban decay and grunge.) On a site visit three days before our wedding we discovered more grunge than we bargained for. Water was raining out of the ceiling, and serious mold infestation had set in – our guests would need hazmat suits just to step foot in the building.

Our response? “Oh, this is fixable.” We made a list of alternate spaces (a cool yoga studio in an old school house, a fire hall, an installation art museum), called around town, and found a great solution within 24 hours. Stressful? Yes. Earth shattering? Far from it. We were calm and cool. My mom and her friend were amazed that I didn’t cry or transform into a ready for cable TV bridezilla creature.

I didn’t consciously say to myself: ‘My cancer is not curable, but a ruined wedding location is.’ Yet, I know that this perspective played a large part in my no big deal attitude. I am way too neurotic to think that cancer has chilled me out; I still sweat small stuff. But having cancer as a young adult has taught me well how to be calm during crisis.

Have you had any major moments when you been able to brush off a seemingly stressful situation because it pales in comparison to the stress of illness? Do you find yourself saying more often “This is no big deal” or “I can handle this”?

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May 31, 2009

Cancer and Greener Cleaners


I try to reduce my exposure to household carcinogens without entering the territory of enviroparanoia.  I buy products that are inexpensive, free of scary ingredients, and don’t have heavy perfumes or essential oils (I just don’t like the smell).  I also like products that actually work.  Buying something green that only does half the job is just a waste. Here are the products I like and a few I don’t:

Dr. Watkins – All purpose cleaner, lemon scent, available at Target.  Cleans counters, tile, bathroom, entire kitchen.

Bon Ami – This stuff has been around for 120 years.  That’s before most scary chemicals were even invented.  It works like magic on my tub and faucet handles, and cleans super skanky pots and pans like a dream.

Vinegar and Water – Cleans windows, hardwood floors, and mirrors.

Automatic Dishwasher Detergent -  Ecover and Seventh Generation have failed to do the trick. Instead, we’ve been using Cascade, which seems like it belongs in a super fund site. Any recommendations?

Has cancer or any other illness made you more conscious of the cleaners you use? What are your favorite green cleaners?  Which ones don’t you like?  Can you recommend anything for my dishwasher dilemma?

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