As a self-described health food nut, Michael Shook was never supposed to feel this way.
Not tired, weak and unable to bring his voice above a whisper because of a malignant tumor that invaded his throat.
Besides being careful about what he ate, he never smoked and rarely drank.
And though the disease has never discriminated, Shook still didn’t fit the profile of a fiftysomething cancer patient.
“I had been having trouble swallowing for about a year, so I guess it wasn’t a big shock when I finally went in and they told me something was wrong,” Shook said recently at CancerCare of Maine at Eastern Maine Medical Center in Bangor, his voice still hoarse, his eyes weary, his body frail. “So I said, ‘Well, let’s treat it quickly then.'”
Shook had the tumor removed and began the slow, often agonizing process of recovery. His wife, Susan Plimpton, couldn’t stop an overwhelming wave of helplessness.
“He had stopped working and was sitting at home, feeling miserable, and I was at work feeling miserable, too, because all I could think about was him,” she said. “I don’t think you can prepare for what you’re faced with. It’s a full-time job.”
When things piled up at home and Michael’s health weighed increasingly heavily on two hearts, the couple found help from an unlikely source, help Susan said has made a huge difference in her husband’s fight.
The couple became involved with the Patient Navigator Program, a relatively new intervention service offered through the American Cancer Society of Maine.
The program provided Shook with his own volunteer “navigator” – not another doctor or clinician, but a supportive shoulder, a do-it-all problem solver and a welcome friend.
Cookie Horner became those things for Susan Plimpton and Michael Shook.
“It’s hard for people to say ‘Yeah, I need some help,’ but with cancer patients, they don’t always think about those things they need to think about, those basic everyday things,” said Horner, a Bar Harbor resident and a retired nurse, although that isn’t required in the Patient Navigator Program.
Horner started spending time with the couple. She called frequently to see whether they needed any day-to-day help and then helped them find that help. She coordinated rides to cancer treatment facilities in Bangor. Sometimes, she just listened.
“Anything you do is going to be helpful,” she said.
The Patient Navigator Program links people diagnosed with cancer to trained volunteers who help them navigate the health care system and identify resources.
The intervention concept is still new and under study by the National Cancer Institute for its effectiveness, but it has gained popularity across the country, including in Maine.
The beauty of the program, according to Michelle Sheldon, the patient navigator coordinator for the American Cancer Society of Maine, is that it’s entirely individualized.
“We’ve had so many different situations with people who may not have support systems in place, so we become that support for them,” said Sheldon, who herself is a thyroid cancer survivor. “That idea of being that resource of support is something that I felt strongly when I was in recovery. It’s one of the reasons I went into social work.”
ACS of Maine started its own two-year pilot Patient Navigator Program in the fall of 2005 in five eastern and northern Maine counties: Hancock, Washington, Waldo, Aroostook and Penobscot.
Funded through a grant from the Maine Health Access Foundation, it’s the first volunteer service of its kind in the area.
“The thing I like about this program is that it’s community-based, and the volunteers all know people in their community who are dealing with cancer. And they want to help,” Sheldon said.
While she has been aggressive recruiting volunteers and educating others about the program, patient navigation remains a service that is largely unnoticed.
“The biggest challenge has been getting this service out to the public,” said Michael Reisman, executive director of the Beth C. Wright Center in Ellsworth, a private nonprofit that provides resources and services for cancer patients. “I’m constantly educating about patient navigators to nurses, doctors, clinics, whoever I come in contact with.”
Reisman is on the advisory committee of Maine’s pilot program and has been active setting up training sessions for interested volunteers in Hancock and Washington counties.
The more people he talked to, the more Reisman found who wanted to lend a hand.
“People want to do this for all sorts of reasons,” he said. “Maybe they have a cancer survivor in their family or maybe they just want to give something back.”
Often, the patient navigator becomes the catalyst for a much-needed support system.
“The volunteer may not necessarily fill all those needs, but they help find those who will,” Sheldon said.
A place to rest
Cookie Horner admitted she didn’t know what was expected of her when she first was assigned to Michael Shook and Susan Plimpton.
“This was my first experience with the program, and I didn’t necessarily know what their needs were immediately,” she said.
Plimpton said she had similar apprehension.
“When [Michael] was diagnosed, someone recommended a patient navigator,” Susan said. “We didn’t really know what that meant, but I guess I figured we could use all the help we can get.”
Within a few days, Horner learned that the biggest hurdle for Shook and Plimpton to overcome was travel. The couple lives in Southwest Harbor, about 50 miles from the nearest cancer treatment center at EMMC in Bangor.
“He needed radiation a couple times a week, twice a day for six hours with time for rest in between,” Plimpton said. “Those were long days. We’d been in the hospital for several hours, and by the end we were exhausted. We didn’t want to drive home.”
Hotels are expensive, even in Bangor. The Plimptons looked briefly at renting an apartment in Bangor, but that too wasn’t economically viable. The options were dwindling.
That’s where Horner came in, like a giant mattress strategically placed to break a hard fall.
She introduced the couple to Wayne Libby, a doctor at EMMC who owns a home in Bangor that he used sparingly.
After hearing Shook’s dilemma, Libby was more than willing to let the couple stay at his home during their frequent trips to Cancer Care of Maine at EMMC.
“She took care of it in two days,” Plimpton said of Horner’s arrangement.
“That really saved us,” her husband said, a tinge of pride in his voice. “We had the whole third floor of this house, and it was right near the hospital.”
Shook has now completed his radiation at EMMC, but he still receives treatment from time to time at a local hospital on Mount Desert Island.
Plimpton said her husband has a really good prognosis about his throat cancer.
“It looks like he has a really good chance of beating this,” she said.
They no longer have a need for housing in Bangor, but every day they remember what Horner helped provide for them.
“We don’t see Cookie as much anymore, but she still checks in,” Plimpton said. “From our experience, this has just been an amazing program.”
Back to normal?
Horner doesn’t know whether she’ll take on another patient immediately, but she said she was glad to lend a hand to Plimpton and Shook.
“It’s such a heavy burden when you’re faced with that,” Horner said. “All I needed to do was care and give up some of my time. That seemed like a small price to pay.”
Horner is one of 18 volunteers who have been trained in Hancock and Washington counties so far, thanks to a strong push by Reisman and the Beth C. Wright Center.
“The program is doing really well, especially in Hancock County,” Sheldon said. “They have a good set of volunteers down there who have made matches with patients.”
“For us, this is a great program, and it fits in perfectly for what we try to provide,” Reisman added. “We’re always learning about what resources are available that might work for our patients.”
Outside Hancock and Washington counties, only about another dozen or so have become patient navigators in Waldo, Aroostook and Penobscot counties combined. Sheldon is confident those numbers will increase soon.
“We have volunteers in other communities. We haven’t had a whole lot of referrals just yet, but we do have volunteers who are ready to be matched with patients,” she said.
Maine’s pilot program is at the halfway point, and while Sheldon and Reisman say that it’s successful, they are uncertain about its future.
“We have always known that this is a two-year grant, but of course we’d like to see it continue,” Sheldon said. “Even so, we have a system in place where we train the current navigators to become trainers for new ones. Hopefully it will become a kind of self-sufficient system.”
Reisman, whose cancer center in Ellsworth is still in its infancy, agreed that the program is invaluable and he hopes it continues.
“Just being able to tell patients ‘Here is a person who is willing to help you get through this situation in whatever way you need’ is a powerful thing,” he said.
As for Michael Shook and Susan Plimpton, the couple is back home in Southwest Harbor now. Neither has gone back to work. For now they’re just trying to keep Shook’s cancer from coming back.
“At some point, we’re going to have to redefine ‘normal.’ I don’t know what that is anymore,” said Plimpton, looking tenderly at her husband. “But, I’m not up for leaving him alone right now.”
For information about the Patient Navigator Program, contact the American Cancer Society at (800) ACS-2345 or the Beth C. Wright Center in Ellsworth at 664-0339.