December 15, 2009

Do You Pay Attention To Survival Rates?


One of the most heart wrenching days of my life came after my first surgery when I learned I had a rare disease variant of my cancer.  It tanked my survival rate an extra 20%.   I felt like someone was yanking my heart through my nostrils.  Years later, a subsequent pathology report showed no evidence of the rare disease variant.  Poof, I was jacked back up to the normal papillary thyroid cancer statistics – which are damn high.  I don’t know what made the variant disappear but I’m extremely grateful.

I love this quote from Rick Gribenas in my book Everything Changes: “Ambiguity is more real than a prescribed prognosis, which is complete crap.  If there’s an 80% chance of this, or a 20% chance of that, it’s still a chance.  Who knows which percentage I’ll fall into?”

I agree that you have no way of knowing which percentage you’ll fall into, but I still want to know my prognosis.  In my mind, not knowing my odds harkens back to the days when doctors refused to tell patients of their prognosis because they didn’t think we could handle the truth.  (I’m sure there are still a few docs who think this way.)

I want to prepare myself for the odds, even though I don’t know which side of them I will be on.  The danger in this for me is that I’m a hypochondriac freak and if my odds were crummy, it would be hard for those numbers to not rule my life.  On the other hand, when I recently learned that my odds of my cancer metastasizing to my lungs, brain, and bones were lower than I expected, it brought me great peace of mind and I was glad to know the numbers.

It irks me when people say “a number is a number” or “I’m not a statistic.”  I feel like those phrases trash science and I’m a big fan of science.  Statistics represent a lot of information that can help navigate our choices in how we treat our diseases.   I think it’s possible to simultaneously look at our health in terms of statistics and live as fully emotional beings.

My prognosis is good so I’m sitting in a pretty cozy space to make these judgment calls about wanting to know my stats.  Maybe this whole post would read a lot differently if my numbers sucked.

Do you want to know your survival rates?  How do you mentally contain that information?

Ric is is a brilliant and philosphical patient.  Read more about him in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Post to Twitter Post to Facebook

April 08, 2009

Kairol At the Capitol


I am blogging from my parent’s house.  Tonight is Passover in Pittsburgh, a welcome pit stop on my whirlwind book tour, which included not only cancer conferences, book bashes, and benefits for young adult cancer, but also the Capitol.

I slide my book across the desks of Senators and Representatives, saying to their legislative aides: “The survival rates for adolescent and young adult cancer patients have not budged since Nixon declared war on cancer in 1971. We have abysmal access to health insurance and clinical trials. And we’re not gonna take it any more…” (Cue the Twisted Sister.)

I’ll soon debrief you on my extremely successful congressional meetings, nagging you with concrete tasks that you and your family and friends need to take to make legislative change for young adult cancer survivors.

But first, I want you to see that any one of us can try to make a big change. I have no legislative expertise. I’d never before met with congressional staff. Yet I sauntered up to Congress and gave them a polite, constructive piece of my mind. I’m tired of complaining about what is wrong with health care, and I want to fix it. If I can do it….. so can you!


Karate chopping cancer outside of Senator Kay Bailey Hutchinson’s office


You can pick your friends, and you can pick your nose, but did you know that at the Capitol you can pick Abe Lincoln’s nose?


Did you know that Senator Kennedy is a huge proponent of funding for research on rare and ultra rare cancers?  Pretty cool.


You don’t need a fancy political science background to take the bull by the horns.


Bulls come in many shapes and sizes.

Post to Twitter Post to Facebook