"After you hear those three words - you have cancer - your world stops."
Kathryn, a self-employed IT consultant, founded her own business in 1991 to give her the flexibility she needed to care for her two developmentally disabled daughters. She had a successful, busy business, and had just returned from a trip to Europe with her boyfriend when cancer changed her life.
"I'd had troubles with my back off and on," said Kathryn, about the pain she felt in her tailbone after a long flight back from Europe. "I thought that's what it was."
Her grandfather had died of colon cancer, but she was 49 and female, "so I was under the radar."
In hindsight though, Kathryn says, "I had every symptom of colorectal cancer for six months except the bleeding. I had a change of bowel habits, weight loss - I was happy about that. And still I wrote the bowel change off because I was stress eating."
Kathryn's cancer was an unusual. It was squamous cell carcinoma, which is a typical form of anal cancer, but it was located in her colon. For this reason, she underwent chemo and radiation first, to shrink the tumor, and then had surgery. With typical colon cancer, the treatment protocol is the opposite.
The first surgeon gave her a 50 percent chance of having a permanent ostomy bag, a device that attaches to the outside of the patient's body to serve as a waste receptacle in the absence of a normally functioning colon.
Kathryn wanted a second opinion, but she had to fight for it. Fortunately, she knew the rules, in part because her boyfriend is a doctor, and he had connected her to an outstanding oncology nurse who knew the ropes.
California law requires the insurance company to deny or approve a second opinion request within 24 hours when it is filed stat (immediately, in medical terms), which hers was.
"At three days I told them they'd better decide," said Kathryn, "unless you want my next call to be to the insurance commissioner."
They ruled in her favor. The second surgeon gave her a much better prognosis - only a 3 percent chance of having a permanent ostomy bag. She is part of the 97 percent that didn't need it.
"Even with insurance I had to manage my own care, which is nuts," said Kathryn. "As patients, we are already going through terror. Most of us are sick as dogs. If it's this bad for me, and I have insurance, and I speak English and I can be a hag, what happens to people who aren't able to express themselves? That aren't from any kind of medical background? It's beyond me why it's so hard to navigate the treatment."
But Kathryn faced challenges at home too.
Just as she was beginning treatment, her boyfriend's father died, and he had to return to the Netherlands to help his mother. Her developmentally disabled daughter Kristy became her primary caregiver. Many friends became her drivers. One, who was a breast cancer survivor herself, went to all appointments with her so she was never alone.
"I had such bad back pain because the tumor was pushing on my tailbone," said Kathryn. "It was Christmas time and I said we're not going to do Christmas this year. I don't feel like celebrating. Kristy said oh no. We are. She decorated the whole house. It was the biggest spirit booster.
"I'm lying in bed. I'm crawling to the bathroom," said Kathryn. "It's amazing that Kristy remained positive. But she did it. She told me I needed to eat and she really took charge for me."
The flexibility of self-employment worked for Kathryn again in this situation. She pared back on her clients, but was able to continue working throughout much of her illness.
"We all look for normal," said Kathryn. "Work allowed me to be normal. I also became the touch point for people who had family members diagnosed. I became the light of hope, if you will, because I was surviving."
Kathryn, who is now a board member of the California Colorectal Cancer Coalition (C4), shares the secret of her success:
"I couldn't have done it without my team. I had faith in my treatment team, faith in my own body, faith in my higher power - my own personal faith. There was a positive attitude. I never thought I could die from any of this. I was going to be part of the 37 percent that survived it. And I am!"