Philomath man faces cancer as a triple threat

CORVALLIS, Ore. (AP) — "How are you doing today?"

Dan Dooley ponders the question as he settles into the big, comfortable armchair at the Samaritan Infusion Center in Corvallis, where nurse Bronwyn Roberts is about to take a blood sample.

It's the sort of offhand inquiry we all get a dozen times a day. The usual response is a simple "fine," friendly but noncommittal, good for coworkers and casual acquaintances.

But not in this place. They know him here.

Here they get the truth.

"I feel more like my normal self today," Dooley tells Roberts, "even though I don't know what my normal self is anymore."

Dan Dooley is a cancer patient, but he's not just any cancer patient. The 41-year-old Philomath resident is dealing with his third diagnosis in an eight-year span, all unrelated, all terrifying, all requiring expensive and sometimes debilitating treatment.

For Dooley and his family — wife Liz, 44; daughter Juleia, 21; and son Devin, 11 — this is the new normal.

"I've learned to say, 'Today's a good day,'" Dooley said.

"Because as positive as I am and as much as I try to stay upbeat, it's a tough disease and it's going to get you down."

Dooley's first bout with cancer began in 2005, when the family was living in Portland. Dan pulled down a rebound in a city league basketball game and turned to a fire a pass down the court.

Suddenly his strong right arm felt weak and painful. The ball fell from his hand.

He knew something was wrong, but he still didn't see the diagnosis coming.

It was Liz who got the call from Dan's doctor.

"He used this word, osteogenic sarcoma, and I was like, 'What is that?'" she recalled.

"He kept saying, 'I'm very sorry.'"

When his wife told him he had bone cancer, Dooley couldn't seem to absorb the news.

"At the time, I couldn't even say it. Now it just rolls off my tongue, unfortunately."

Three months of chemotherapy followed. Dooley lost all his hair. He developed mouth sores and couldn't eat. His white cell count plummeted, crashing his immune system and landing him in a hospital isolation ward.

Eventually he had surgery at Oregon Health & Science University Hospital to remove most of his right humerus, the long bone in the upper arm, and replace it with a cadaver bone.

The operation was a success.

The recovery was a disaster.

As she sat with her husband in the recovery room, Liz Dooley saw his skin turn a ghastly greenish tint and heard his breathing grow ever more ragged — and then stop in a final, hideous death rattle. The combination of pain and anti-nausea medications had suppressed his nervous system, causing his heart and lungs to shut down.

"He had a full-on code," she said. "They went through two crash carts on him."

The medical team resuscitated Dooley that night, but there were more complications ahead. The hardware holding his new humerus in place came apart, requiring more surgery and another replacement bone. Then the second cadaver bone became infected, requiring a third procedure.

"Now I have an all-metal rod," Dooley said. "The TSA loves to see me coming."

The second diagnosis came in 2009. During a routine follow-up visit to have his arm checked out, Dooley told his doctor about a small lump on the left side of his jaw. It didn't look like much, but the doctor ordered a biopsy just to be safe.

The test produced another unfamiliar word: mucoepidermoid carcinoma. It was a cancer of the salivary gland.

This time, the treatment was more straightforward. No chemo or radiation required, just a single surgery to remove the malignant gland.

Dooley had the operation on Christmas Eve 2009, not long after moving his family to Philomath.

Again, he went to OHSU for the procedure. As his wife put it, "They know him there."

Eating was difficult for a while afterward, but Dooley made the adjustment and got on with his life, as he had after the bone cancer.

The third blow fell in 2012.

When he turned 40, Dooley decided to get a full physical, including a prostate check. Something didn't feel right, so his doctor sent him to a specialist. A colonoscopy followed. The surgeon was blunt.

"He said, 'You have rectal cancer,'" Dooley recalled.

"I thought, 'Here we go again.'"

Dooley became a regular visitor to the Samaritan Infusion Center, getting chemotherapy to shrink the tumor in his bowels. Every other Monday for six months, he would sit for hours in the chair as powerful drugs dripped into his bloodstream through a port implanted in his chest.

He also underwent radiation treatment — five days a week for five weeks — that left his body ravaged.

In October he went back to OHSU, where a surgeon removed the tumor along with three cancerous lymph nodes and a portion of his rectum.

Since that time he's used an ostomy bag. On April 1 he'll go back for an exploratory procedure to see if he qualifies for another operation, this one to reconnect his colon and restore normal bowel function.

Dooley's doctors are mystified by his triple misfortune.

"It's very unusual," said his Corvallis oncologist, Dr. Kimberly McGregor of Samaritan Hematology & Oncology Consultants.

"There's no real reason to explain why he's had three unrelated cancers ... there's no real obvious risk factors."

There's also no way to predict whether Dooley could be stricken again. Now that the cancerous tissue has been removed from his bowels, he'll be closely monitored. If he gets through the next five years cancer-free, there's a good chance he'll be cured.

Considering all Dooley's been through, McGregor said, he's coping remarkably well, in part because he already knows the drill. But just coming in for post-op checkups can be an exercise in anxiety.

"People like Dan have to live with the thought that it could always come back."

Dooley's illness has impacted his family in a variety of ways.

"I wish I could just limit the effects of cancer just physically to me," Dooley said. "But it affects Liz, it affects Devin, it affects Juleia."

He's missed a lot of work over the years because of his repeated bouts with cancer, and his kids have grown used to seeing him resting on the couch instead of working in the yard. He never regained the full use of his right arm, and he can no longer tackle home repair projects the way he used to.

Liz, who works part-time as a fitness instructor and coaches volleyball at Philomath High School, spends a lot of her time ferrying Dan to medical appointments. With Juleia working out of state with AmeriCorps, Liz and Devin have taken over much of the yard work and household chores.

Emotionally, it's been tough on Devin. He has trouble focusing in school. He feels guilty for playing with his cousins while his father was in the hospital. Some nights he doesn't sleep because he can't stop thinking about his dad.

"He's had questions," Liz said. "One I really remember is he asked, 'Dad, are you going to die?'

"So we know his wheels are spinning. He's thinking about death."

It's been hard on the family finances as well.

Dooley has health insurance through his job as a permit specialist with the Oregon Department of Transportation, but his coverage isn't as good as it used to be, with a $5,000 deductible and higher premiums, copays and cost-sharing ratios.

For every cancer diagnosis there's an oncologist, a surgeon, a radiologist, chemotherapy staff, medical technicians, social workers, nurses and dieticians.

The stack of medical bills on the dining room table is three inches high. Liz goes over each one line by line. Sometimes she catches costly errors, and she doesn't hesitate to challenge insurance companies or medical practices over billing questions.

Despite her vigilance, the family estimates Dooley's cancers have cost more than $30,000 in out-of-pocket expenses to date.

They've cut back on luxuries, deciding not to renew their season tickets for Oregon State football and selling the family travel trailer.

But now they're facing another big bill. This winter, their septic field failed. Repair estimates range from $15,000 to $25,000.

Liz was floored when she got the news.

"I'm like, really? I feel sometimes I'm being tested."

People have stepped in to help where they can.

Dooley's ODOT coworkers have pooled their unused leave time so he could keep drawing a paycheck after his sick leave was used up.

Friends and church members check in occasionally to ask how things are going or stop by to drop off dinner. Sometimes they'll send grocery store gift cards in the mail.

Diane Noble, who's known Liz since high school, has been there through it all. She's the one who keeps everyone else updated, the one Liz knows she can call at a moment's notice to watch Devin if she suddenly has to take Dan to the hospital.

"I call her my point person," Liz said. "My other me."

Noble said she's happy to help, but there's only so much a small circle of friends can do. Now, with the financial challenges facing the Dooleys, she's reaching out to the wider community. She's started organizing fundraising activities, and early this month she opened a medical account in Dan's name at Citizens Bank.

"I think they will be pleasantly surprised at how many people step up to help," Noble predicted.

"As their friend, I'm hoping this will not only be a financial help but that they'll feel really loved and cared for by the community."

Many families struggling with cancer are reluctant to ask for help, said Jan Spencer of the Samaritan Cancer Resource Center in North Albany, and the Dooleys are no exception.

"They're like anyone else," she said. "They're just trying to make it on their own, and they'll often just keep going until they're overwhelmed."

But many resources are available, from classes to support groups, she said, and it's important to take advantage of them. It's a lesson the Dooleys are beginning to take to heart.

"As a man, it's hard for me to ask for help," Dooley said. "But I've gotten better at it."

By sharing his own experience with cancer, he hopes he can help persuade others to seek out the help they need.

In the meantime, the family is trying to stay positive as they look ahead to the next round of surgery and follow-up treatment.

It isn't always easy.

"We've tried to figure it out. Why is it three times that we've been through this? We may never know," Liz said.

"We're lucky that we have each other."

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Information from: Gazette-Times

 

Copyright 2013 The Associated Press.