In New York City, indoor cycling is a contact sport.
Amid this sea of black-clad intensity, Jennifer Goodman Linn stands out like a burst of sunlight.
That she is here at all is some kind of a miracle.
“The choice seemed clear.”
Linn’s medical journey, on the other hand, has been anything but.
“I was losing weight,” she recalls, “but my pants were tight.”
No, although the newlyweds were trying.
Yet, like many people, she had never heard of the wordsarcomaand didn’t grasp what it meant.
“I was in deep denial.”
When she and Dave arrived for her first oncologist appointment a few weeks later, reality finally hit full-force.
It was, Linn says, “the first time I had an out-of-body-scared moment.”
Worse, there was no medical protocol for how to proceed.
But facts were in short supply.
“The more you see something, the more experienced you get at dealing with it.
With orphan cancers, most physicians and patients have no blueprint.
Getting a cancer diagnosis is an isolating experience under the best of circumstances.
Recently, her oncologist told her she is free of measurable disease.
When she asked what came next, the answer was less than reassuring.
“I don’t know,” the doctor told her.
“There’s a 50-50 chance that it’s coming back.
“I needed an outlet, but I also created the organization selfishly,” Linn says.
“If I leave it up to someone else to develop new therapies, it might never happen.”
Anderson Cancer Center in Houston.
One of the great challenges of treating an orphan cancer is detecting it in the first place.
“But most doctors don’t, which means they’re easy to miss.”
The resulting delay can be disastrous.
“I was studying all the time, burning the candle at both ends,” she says.
“I thought being tired was normal.”
After she graduated, she began experiencing other problems, including back and hip pain and deep blushing.
“That was strange because I’m not shy at all,” she says.
“I think I was pegged as a yuppie hypochondriac,” she says.
In 2000, Lindholm moved to Boston with her husband to begin a job as a tax lawyer.
But the stressed and busy Lindholm put the results out of her mind.
“I was troubled, sure, but I told myself I was basically healthy.
Growing up, I was taught to push past any obstacle,” she says.
She roused herself, got off the train and began walking until she felt better.
She flagged down a cab to continue on to work, and then, suddenly, the pain returned.
“I started screaming, ‘Take me to the emergency room!’
Then I’d feel better and say, ‘No, turn around and take me to work!’
She learned that a scan of her abdomen had revealed that her liver was full of tumors.
His reaction was the last thing she expected.
“Wait a minute,” he said.
“I remember hearing about this in medical school.
I don’t think youdohave liver cancer.”
He urged his daughter to look for other answers.
In one sense, this was good news: Her particular carcinoid tumors were progressing slowly.
Still, Lindholm didn’t despair.
“I’d been having vague symptoms for yearsthe flushing, fatigue, achinessand everything was getting worse.
Now I felt as if I could move forward.”
But she couldn’t move forward, at least not very far.
“I was amazed at how disorganized it all was.
It was like throwing spaghetti against the wall.”
With limited treatment options, the best hope many patients have is joining a clinical trial.
Except, surprise, those aren’t easy to find either.
“It’s tough to get an adequate sample size.
“Talking with colleagues who may have handled a few cases.
Lindholm, for her part, has managed to get into two trials, although with limited success.
Cycle for Survival has already funded a trial at Memorial Sloan-Kettering that has helped other patients, too.
Despite her misgivings, she entered the trial in March of 2008.
Ahr’s doctors were initially amazed by her results.
After several months, scans showed this very aggressive tumor shrinking and stabilizing.
“I felt we’d licked it,” Ahr says.
Last fall, however, the cancer began growing again.
“That was really, really difficult,” Ahr says, her voice breaking.
“I thought we were done.”
Within a few weeks, her cancer stopped progressing yet again.
“Now this drug that targets this receptor is being explored in lung and breast cancer, too.”
(See “Breakthroughs That Benefit Us All.")
These breakthroughs haven’t yet helped Lindholm, who has survived nine years despite a scary lack of options.
“This wasn’t her vision for my future.”
But Lindholm had her own vision.
And Lindholm herself, with no medical background, is moving the field forward.
“That was making it twice as hard to get an accurate diagnosis.”
“Working together, we’ll collect enough samples to yield robust, reliable studies,” Lindholm enthuses.
Again and again, she has suffered hair loss from chemo and exhaustion from surgery.
Through it all, she says, “exercising has been my therapy.
Sometimes I could do only a little bit, but I’ve never stopped.”
Although in remission, she has not gone more than 13 months free of disease since her diagnosis.
It makes you realize you’re not in control of anything.”
I’m making the most of my relationships,” she explains.
If her cancer comes backagainLinn says she’s ready for it.
“I know I can handle it because I’ve handled it before.”
And Linn is constantly strategizing how to raise more and attract attention for its cycling events.
Beneath her sunny exterior is a woman of uncommon grit.
“I understand my purpose now,” she says.
“I know what I have to do.
My efforts have created more optionsI feel good about that.
Meanwhile, I’m seeing what I can learn along the way and enjoying the ride.”
Photo Credit: Thayer Allyson Gowdy
