Everything Changes - The Guide to Young Adult Cancer

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.

My tiny little ass is getting fatter. And I wrote a comment about it today on a New York Times Well Blog post about cellulite:

“I have been stick thin for years from cancer treatments and only in the past few months have I seen cellulite on my body for the first time ever. It is kind of unattractive, but a vast improvement to looking like a victim from the camps. It might take some time to get used to, but I’m welcoming my cellulite.”

I don’t talk about my body much because in the world of women it is easy to be hated for being skinny - even scary skinny like me. I’ve always been svelte. My body was great for ballet, but freakish by other standards. ‘Toothpick legs’ was the name kids called me at summer camp. Not a confidence booster.

Before cancer I was a healthy 134 pounds. Since my hormone therapy I’m now 112 despite my efforts to gain weight. I feel like my bones are going to impale my partner, like I might be easily carried away in a storm. I catch people looking at me with tempered disgust. So yes, the ripples of fat that just showed up on my ass in the last few months are not attractive but are okay with me.

Some of you may be rolling your eyes by now thinking “whatever you skinny bitch.” I know that being underweight is a hell of a lot easier than being overweight in this culture. But my body is my body and I want to write about it.

It is weird to work so hard to keep this body alive and then to focus on something as seemingly shallow as looks. But how we look can often impact how we feel about ourselves, and that is something worth writing about.

Has your body changed shape or size from surgery, treatments, hormones, steroids, lack of activity? How have you adjusted to this change? Do you feel like other people notice or comment on your size? How often do you think about your appearance?

I’ve had to live with jobs that were way off my career path just to pay my health insurance.  Heidi Adams, executive director of Planet Cancer, is going to be asking President Obama about this very issue on ABC Primetime tonight live at 10 PM EST.  The program is called “Questions for the President: Prescription for America” (Must see young adult cancer TV.  Go Heidi Go!)

During cancer treatment I lived on disability.  Afterwords I needed a job with health insurance.  In my book Everything Changes, I wrote about my day job working for a non-profit organization that helped ex-offenders. “I sat in church basements with rapists and murderers (a remarkably respectful and nice bunch of guys) teaching résumé writing and feeding them the organization’s line that if you work hard enough, you can achieve anything. These men and I knew this was bullshit, that life’s circumstances don’t necessarily comply with will or effort.”

The job had ups and downs.  The downs: My employer’s insurance agent called me nonstop asking when my cancer would be gone so their healthcare rates would go down.  I worked 40 hours a week, the pay was lousy, and I had no reserve energy to write or choreograph.  For the first time in my life I was utterly non-creative.  So much for living your dreams after cancer, right?

The ups: I had health insurance.  And, the men I taught were pretty cool.  After going through cancer it was great to be surrounded by people who were also struggling to adjust to “normal” life.  They made me feel like less of a freak.  We were good company for each other.  Is it pathetic that ex-cons made me feel normal?  I don’t think so.  We were all just people trying to cope with change.

How has cancer and the need for health coverage impacted your work life?  What jobs have you taken that you would not have otherwise?  What were the ups and downs?  Are you job searching now or returning to work and how are you handling it?

When I interviewed Rick Gribenas for my book Everything Changes, his honesty blew me away.  That same kind of honesty lives on in Charissa, his wife who is now widowed.  She is the founder of BRICKS for Young Adults. Yep, that’s her pic above.  I hope this is the first of many guest posts from her:

“I learned very recently that the term ‘widow’ is not an option on Myspace when selecting a ‘Status’. This really bothers me. I feel that the other options don’t apply to me. So, I need to reclaim the words ‘widow/widower’.

I think people are afraid of it/us. Sure, our new status is difficult and comes with a lot of work to do. That doesn’t mean we are some strange, mysterious creature not to be trusted or gotten close to. The word widow means I was a part of a loving, special relationship that ended not by choice but by circumstance.

To my friends I say, ‘Believe me.’ When I tell you I’m ok, I’m really not lying or covering up my feelings to spare you the details. Every day is new as I work through this. I have good days and bad days. Some days all I do is smile when I think of my husband, other days I can only cry. It simply means that I am ok. Not awesome, not wonderful, not wallowing in misery. When those times come I hope you’ll be there too, but when I’m ok trust me and let me be ok for as long as it lasts.

To the cancer community I say, Don’t ignore me.’ Bereaved spouses have so few resources. Sure, my partner’s story may not be an American Cancer Society commercial waiting to happen, but it’s mine, and it connects me to the larger community of those dealing with cancer in so many capacities. I’m not going to rain on your parade of positivity, nor is my “widowdom” any more contagious than the cancer that put me here. I shouldn’t get kicked out of the club because my story didn’t have the happiest ending. It’s still a story of hope, love, trust and living.

Being a widow is now a part of my story, a learning experience that makes me who I am. I learned this acceptance from my husband- that every experience has value, and it only has the power over you that you give it. It has happened, you have no choice but to accept it, so now what do you do with it?  You all already know my answer to that.”

If you’re a bereaved young adult, how do people around you respond?  If you are a survivor do you ever reach out to widows/widowers or does it freak you out – especially if you are still in treatment?  (Come on, be honest.) I think our community often sweeps bereavement under the young adult cancer rug.  This needs to change. Do you agree?

Early on in my five-year research stint on young adult cancer, I learned about the down sides of the American Cancer Society.  They have no direct support services, education, or research targeted to young adult cancer patients.   But let’s not throw the baby out with the bath water.  Here is why I love American Cancer Society anyway.

Check this out:  Young adults are the largest group of underinsured and uninsured adults in the United States.  This plays a huge part in our delayed diagnosis, and is a big reason why young adult cancer survival rates have not budged in 30 years.  Health insurance is one of our biggest barriers to survival, but who in the cancer community is stepping up the plate to talk about this?  Almost nobody but the American Cancer Society’s Cancer Action Network (ACS CAN).

I got a press release from ACS yesterday that calls upon Congress to enact legislation that will ditch evil pre-existing condition exclusions from health insurance. ACS CAN is asking legislators to make sure subsidies are available for cancer patients who can’t afford treatment.  ACS CAN spoke out about improving access to palliative care and so much more.  I get emails daily from young cancer survivors writing about these very issues.

When I was writing a section in my book about how young adult cancer survivors can make a difference, ACS was the only cancer org I found mobilizing to influence long lasting change around access to healthcare.  Only they truly understood that we have to use the power of our voices and votes to change cancer survival rates.  What could be more worthwhile?

Do you support the American Cancer Society?  Have you participated in fundraising efforts or action center?  What other kinds of services have they provided you with during cancer?

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?

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?

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?

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).

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?