Nancy Brinker, founder and CEO of Susan G. Komen for the Cure

But they should have known. If Twitter and Facebook can bring down military dictators in North Africa, after all, even as established and connected a charity as Komen is relatively small potatoes.

Does it even matter that Komen has no relationship to the pink gun that surfaced on the Internet? The fact that people had no trouble believing they were linked tells you how big their PR problem is.

I’m an ovarian cancer survivor, and have never been a Komen fan. The whole “pinktober” phenomenon lost me at the pink buckets of fried chicken.

Let’s just say the entire hot mess of pink marketing was a giant turnoff for me. And for other people too. The Komen foundation legal action against anyone using “for the cure” didn’t score points, either.

But the dyspeptic reaction to those lawsuits was nothing compared to what erupted after Komen announced their plan to cut grants to Planned Parenthood. The quick reversal of Komen’s decision has done little to dampen the furor.

Can the Komen foundation recover? Some PR experts doubt it.

But a better question might be: Should Komen recover? There is a school of thought that when charity founders retire or die, the organizations should die with them. The original mission gets lost amid the everyday tasks of promoting a brand, delivering services, and managing employees. Complacency, or even corruption, can creep in.

Komen’s founder, Nancy Brinker, is very much alive, of course, and still at the helm. Brinker is the sister of the late Susan G. Komen, and CEO of Susan G. Komen for the Cure.

Susan Sonley, a two time braest cancer survivor (with tiara) posing with friends at Susan G. Komen Global Race for the Cure at the National Mall in Washington, D.C., June 4, 2011. (Evy Mages/For The Washington Post)

Where were all the teal dog leashes and kitchen spatulas? How about some awareness of the link between ovarian and breast cancer? Why was no one talking about the lack of an early-warning test for ovarian cancer? I got lucky. I’m in remission, and have been for ten years. But many women are not so lucky.

Only a few days ago, I decided it was time I learned who Susan Komen was. I could not understand the motivations, political or otherwise, of Komen’s CEO unless I knew how she came to found the organization.

I was not surprised that Susan was a lovely young woman. Anyone who’s been around cancer knows it does not play favorites. Slender women get cancer. Athletic women get cancer. Nonsmokers get it. Vegetarians get it. Mothers and grandmothers. The childless. Children. And — conventional wisdom to the contrary — some of the nicest, most positive-thinking people you’ll ever meet.

What did surprise me about Susan Komen’s story was how similar cancer experiences are. When you have a less publicized form of cancer, you tend to notice the boundaries between cancers, and the unequal allocation of resources. There were days I felt I had a totally different disease from the one afflicting other cancer patients.

In a way, I did. Experts now believe we use the word ‘cancer’ to describe what may in fact be a thousand different diseases.

But here’s what almost all cancer patients have in common: A pervasive, nagging fear, every day. Women grieve body parts they lost, and the dignity that went with them. They feel less beautiful. They feel less whole. And they learn, the hard way, that some friends will move on.

Cancer is heartbreaking, regardless of type. In the case of Susan Komen, Nancy Brinker watched for three years as tumors invaded every part of her beloved sister’s body — even poking outside of her skin — and killed her at the age of 36.

It’s true that Susan Komen wanted a cure for cancer. But she also worried about the uncomfortable chairs in waiting rooms, and the blank, depressing walls. She thought cancer patients shouldn’t have to deal with such ugliness. She thought waiting rooms should be cheerful places.

A modest goal, but one that struck a chord in me. Sometimes it’s the small things that make all the difference in the day of a patient. When you have cancer, you learn quickly that today is what you have.

I do not like or trust big organizations. The higher the overhead, the more skeptical we should be. But if I were to give advice to the Komen foundation, I would say: Go back to your roots. Go back to your inspiration. Go back to the woman who could not possibly have liked how the story of the organization named for her stands now.

Donna Trussell is a poet, fiction writer and native Texan. She lives in Kansas City. Follow her on Twitter @DonnaTrussell.