Everything Changes - The Guide to Young Adult Cancer

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?

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?