Source: Columbus Dispath (www.columbusdispatch.com)
Author: Misti Crane

Surgical scars have begun to fade.
Chemo and radiation are a memory.
The cancer appears destroyed.

“The scariest moment is when all the treatment is over and they close that door,” Jeanette Ferguson said today as she stood outside Ohio State’s Mershon Auditorium during a morning break in the Lance Armstrong Foundation’s Livestrong Summit.

Ferguson is one of a thousand people here this weekend who wants to give voice to a community of millions and sculpt a polished and sound cancer-care network from its uneven and, at times, weak existence.

Her cancer bio: oral cancer, 2002, advanced, no known risk factors, treated at the Arthur G. James Cancer Hospital with a protocol so aggressive that only the strongest of patients can withstand its side effects.

She was 26 and had a 50-50 chance of living. She is, to use the term so often employed with this disease, a survivor.

That idea is taking a new shape. People are talking about what that really means. This morning, former Surgeon General Richard Carmona told delegates to the summit that survivorship is often forgotten.

“It’s like dropping a citizen in a wilderness without a map or a compass and saying, ‘Find your way out.’ ”

He and three other surgeons general earlier this week called for invigorated efforts to combat cancer and its fallout. Among those: Former cancer patients should leave treatment with knowledge and resources, with a “survivorship plan.”

The thing about survivorship is it doesn’t mean pink shirts or yellow wrist bands. It doesn’t mean a clean slate.

It means a new chapter blessed with hope but fraught with fears and challenges and misunderstandings, with physical and emotional tests.

For Jeanette, survivorship has many facets. It’s even been helpful in ways.

When her mother underwent colon-cancer treatment, Jeanette understood the tendency to withhold setbacks from doctors; she knew the difference between ordinary tired and chemo tired.

“It’s absolute every-part-of-your-body-cannot-move exhaustion.”

It’s guided her to a career at Ohio State as a post-doctoral fellow studying oral cancer, to a passion for advocacy on behalf of others.

It has brought frustrations and sadness.

She remains angry that the cancer went unrecognized by dentists and doctors for so long, despite her repeated complaints that a sore once attributed to irritation from braces would not go away. Disbelief still flashes in her eyes when she talks about it.

She’s frustrated that her dental and medical insurers tried to pass charges to the other, that she’s going to have to pay thousands out of pocket to replace two teeth lost to cancer.

She’s baffled that, after a year of trying to have a baby, she learned from her own research that medicine prescribed to relieve dry mouth is toxic to fetuses. None of her doctors thought to tell her, she said.

Jeanette’s thrilled that, after going off that medicine, she has 20-month-old Ryan.

“He is just a doll; he’s my life.”

And there’s Bryan, his dad, who after seven months of marriage found himself with a wife facing a 14-hour surgery that required slicing through her face and replacing part of her tongue with tissue from her arm. He’s the same man who fed her through a tube and cleaned the house and kept working and loved her.

And friends. Many of the newer ones have been lost to the disease, but those who live are some of the best, craziest, most passionate people she knows.

There’s so much more to say about Jeanette, about everyone whose lives have been stretched and torn and redesigned by cancer.

Survivorship, as it were, is as complex and unique as each of those people called survivors.