The new war on cancer — one hero’s story
By Patty Fuller

“The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal. America has long been the wealthiest nation in the world. Now it is time we became the healthiest.”—Richard M. Nixon

When President Nixon uttered these words at the signing of the National Cancer Act in 1971, he altered the course of medical research in the United States. Are we winning the war on cancer? Where research is concerned, man must remain the measure of all things.

Thirty-six years ago cancer was the equivalent of a death sentence. Today, patients like Del Mar’s Russ Knerr are a testament to the new war on cancer: Treat it as a chronic disease, versus a curable one.

First diagnosed in 1994 with Stage 1B malignant melanoma, Knerr quickly moved through the stages of grief from denial to “denying the illness the right to take him.” Knerr has been Stage IV since August 2001. His cancer has metastasized from his face to his neck, lymph nodes, arms, back, chest, thigh, liver, femur, brain, hip, abdomen and skull.

After 13 years and 21 treatments, Knerr, a 53 year-old, 180 lb., 6’2” male is still home every night for his wife, Lynn, his daughter Katy, and his mother-in-law, Toni.

Without a Goal, Things Begin to Unravel
Knerr’s journey with cancer began in 1979 when he and his future wife, Lynn, were attending the Thunderbird American Graduate School of International Management in Glendale, Arizona.

During that period, Russ had a suspicious mole removed from his stomach. He thought nothing of it until he got a call from his mother that she had been diagnosed with a malignant melanoma. She had beat breast cancer earlier, but this was a new development.

Over the next 15 years, Knerr started seeing a dermatologist every year and had five-15 moles removed at a time. He was finally diagnosed with Familial Dysplastic Nevus Syndrome.

As time went by, Knerr became lax about keeping his regular appointment with the dermatologist. In 1994, he got a wake-up call. He was diagnosed with a Stage 1 malignant melanoma on his face. The margins were clear, so Knerr opted out of taking the prescribed Interferon treatments and convinced himself he could stay on top of it.

Two years later, while working in Spain for a computer company, he came home to Del Mar to spend the Christmas holidays with his wife, Lynn, and their daughter, Katy. Lynn noticed a lump under his jawbone and told him he ought to get it checked out.

The family got the call with the biopsy results on Dec. 24. The melanoma had spread to his neck and lymph node and required prompt surgery. Knerr checked into the hospital for a radical dissection after the New Year. The surgeon had to cut through his jugular vein, muscles, and nerves to remove the tumor. End result: Knerr lost muscle control in his lower lip, tongue, right shoulder and arm, as well as ending up with paralyzed vocal cords.

At this juncture, Knerr realized denial had been a great place to live. It had been his shield for 15 years. Now, he had to actively fight for his life. With each new diagnosis and treatment, Knerr began asking the rhetorical question, “What does

this mean to me in terms of a cure?”
The Emotional Journey

“Before cancer,” says Knerr, “I guess you could say I bottled things up inside. I was in a high-stress job and had a new baby at home.”
Knerr was away from home 75 percent of the time. The domestic division of his software company had shut down. He had to take a job in Spain from 1996 – 1997 to support his family.

During this period, Knerr and his wife, Lynn, were on a quest for alternative cures. The doctors told Knerr how long he had to live after each new diagnosis. The Internet became his enemy. Limitless statistics and stories of death were at his fingertips and he felt out of control.

“There are two ways of looking at cancer, says Knerr. “There’s the educational side – always learning about the disease - and the emotional side. Women are much better at using their emotions to solve problems.”

The emotional journey was the hardest for Knerr. He always had male friends, but wasn’t used to communicating with them on such a personal level. Knerr needed to talk to his friends about his cancer. He did, and if they looked shocked, he knew to back off.

The biggest challenge was for his daughter, Katy. She had helped give her dad his Interferon shots since she was 6. As she approached 10, Katy started hating hospitals and refused to visit her dad. She started acting out and had a crisis each time Knerr got a new diagnosis.

“It’s hard to know how much to tell a child. If I told her the bad news, then I survived, it would make it harder on her,” says Knerr. It’s like crying wolf too many times. But, if you leave a child out, they don’t have the tools to deal with it.

“There’s very little support out there for children and especially for teenagers,” continued Knerr. “It’s been difficult because teenagers have a hard time talking about how they feel about most anything, but especially the mortality of their own parents.

Now that Katy is 17, she can honestly say, “I think mom and dad handled it right. When I was young, I always thought my Dad would survive. If they had been too emotional with me, it would have scared me. I guess you could say I preferred to live in denial.”

Anticipatory Grief

Each reoccurrence of cancer creates a “new normal” for the family of someone who lives with a chronic illness.

Every time Knerr was able to make it successfully through another treatment or surgery, there was the gradual return to normalcy, but with a dark cloud of anticipatory grief still hanging over their heads.

Each 12 – 18 month’s, with each new diagnosis, the fear of losing “Dad” began all over again. It wasn’t until Katy came home from summer camp with a poem titled, “The War Inside You,” that her parents understood what the saying, Anticipatory Grief, really means to the family members of someone living with a cancer.

Katy has been in counseling since 9th grade. She claims, “It hasn’t helped too much yet, but maybe it will pay off in the future. I think I’ve learned some incredible coping skills and am stronger for it.”

At 17, Katy says she is just beginning to understand cancer. “Now, I realize how special Dad is. He wants to fight to stay alive. He’s back in the hospital again and this is the first time I’ve visited him since I was a little girl. I play guitar for him twice a day and fielded all the phone calls for Mom and Dad,” added Katy.

In summary, Katy’s advice to other children of cancer patients, “Spend as much time as you can with them.”