Making the Most of It
New symptom management program helps patients get back to their lives
Bowling. Shopping for clothes that fit. Gardening. Enjoying a vacation.
When a cancer diagnosis threatens, small pleasures like these can seem trivial. That is, until you can't do them anymore. Activities like these help to make the fabric of life. That's why the University of Michigan Comprehensive Cancer Center has created a Symptom Management & Supportive Care Clinic. Its sole focus is to help people with cancer feel better so that they can continue to live a full life. Clinic staff works in collaboration with patients' oncologists.
"We believe that it's not enough to just treat the disease," said Suzette Walker, N.P.A.O.C.N.P., a nurse practitioner who leads the clinic along with Susan Urba, M.D. "Our goal is to help patients manage related symptoms and side effects to help them maintain a high quality of life."
We talked with patients about how their lives have changed since they visited the Symptom Management & Supportive Care Clinic. Here's what they told us:
GOALS: Reduce nausea, relieve pain
Brooke Bolley has the polished look of someone who understands beauty intuitively. She is naturally pretty, to be sure; but if you talk with her, you'll understand that the ginger highlights in her hair and the subtle charcoal lining her eyes are her own thoughtful design.
Her graceful appearance is all the more remarkable when you consider the violence cancer has inflicted on her body. In April 2009, doctors found a tumor growing between Bolley's stomach and esophagus. Four days after surgery to remove her stomach, sepsis set in. The blood infection spread, requiring the amputation of her right leg below her knee.
Since then, Bolley, a 26-year-old hairdresser, has struggled with severe nausea and pain. She wasn't able to keep pain medications down, so the Symptom Management & Supportive Care Clinic switched her prescription to patches that would deliver the medication through her skin. Walker said standard anti-nausea medications didn't work for Bolley, so they took a different approach and prescribed Olanzapine. Although Olanzapine is not widely used for nausea-it's typically used to treat schizophrenia -- several clinical studies have demonstrated its effectiveness for this symptom.
"I still get the nausea," she said. "But it's under control now."
Less than two weeks after visiting the clinic, Bolley's weight rose from 86 to 89 pounds. Now able to fit into a size 2, she went shopping.
Goals: Relieve depression, reduce pain, improve mobility, lessen fatigue
Jean Foley, a former horse trainer from Stockbridge, Mich., took her cane and headed out to the paddock. She needed to wrap the ankle of one of her former race horses, Jackser Wild.
A once routine task was now noteworthy. For years, Foley's life revolved around tending to race horses and her farm. But after two surgeries for bladder cancer and a stroke, none of that was possible. When Foley first visited the Symptom Management & Supportive Care Clinic in March, she could hardly walk and suffered tremendous pain. As a result, she was depressed and thinking of suicide.
"I just didn't want to live anymore," said Foley, 68. "Not the way I was."
Social worker Claire Casselman began meeting with Foley to help her work through the emotional trauma, such as her frustration and embarrassment from the ostomy bag she has had to wear since her bladder was removed.
Pharmacist Emily Mackler sat down with Foley to discuss each of the medications she was taking and helped her plot a new schedule to help her take them more regularly. Urba and Walker met with her to discuss her pain on an ongoing basis and gradually identified a better medication regimen to alleviate it. They also provided her with a referral for physical therapy that helped her regain her ability to walk.
Foley has gradually regained her strength -- physically and emotionally.
"I can't do what I used to do -- not half of it -- and that's what upsets me. But Claire has been a real big help to me," she said. "Sometimes I get down in a hole, but then I shrug it off and crawl back out."
Goal: Relieve headaches
When Joe Wollschlager was diagnosed with a brain tumor in early 2006, a doctor told him he might have months to live. Wollschlager, a former Marine and an indomitable optimist, made other plans.
He enrolled in a clinical trial that has held his cancer at bay. A month after completing his initial treatment, he ran a 26-mile marathon. But now, more than four years later, the cancer is beginning to grow again.
Intense headaches have accompanied the cancer's spread. Wollschlager's oncologist had tried to treat the headaches with increasing doses of hydrocodone, but the medication would wear off quickly and Wollschlager didn't want to keep increasing the dose.
"We went on a two-week trip in Hawaii, and I was in pain all the time," he said.
A referral to the Symptom Management & Supportive Care Clinic helped Wollschlager find the right prescription for his pain. He was given oxycodone, a medication the Supportive Care team learned had been effective for him in the past after detailed questioning and review of his chart. He was monitored closely to determine the best dose. Since then, the pain has subsided.
"The staff in the clinic is really thorough, and they genuinely care," Wollschlager said. "I was joking with Suzette, and she said, 'I love you,' and I said, 'No, I love you. You took my pain away.'"
Goals: Relieve depression, reduce pain, improve mobility, lessen fatigue
Before surgery for breast cancer last November, Melissa Kenney played softball, golfed and bowled. She was an active 32-year-old.
But Kenney developed blood clots after surgery. Although they were successfully treated, she continued to experience swelling and shooting pains from her neck down into her arm. Doctors prescribed Vicodin, but were hesitant to refer her to physical therapy because of her high risk for clots.
"I kept thinking I should be feeling better. I thought, 'I'm 32; I can't live like this,'" Kenney said. "I know it takes time, but it's so hard to go from being able to do everything to being able to do nothing."
Kenney was referred to the Symptom Management & Supportive Care Clinic, where she received a new prescription for a stronger pain medication -- which has been more successful in relieving her pain. The team suggested she track in a diary when her pain worsened so that they could help to fine-tune her medication regimen.
The team also referred Kenney to a physical therapist trained to manage lymphedema, the condition causing Kenney's symptoms. The therapist showed Kenney exercises to help improve her range of motion and re-fit a compression sleeve that began to loosen as her arm circumference shrank two centimeters.
Kenney also met with social worker Claire Casselman to help manage emotions that were starting to become overwhelming. Casselman encouraged her to expand her journaling to include her feelings.
"I thought I could handle things on my own because I'm a strong person," Kenney said. "But it's nice to talk to someone who's not a family member or a friend who will say, 'I know,' or try to console you. You think that you're not supposed to have bad days once the pain is under control. But it was great to talk with someone who said, 'Well, yeah, you're allowed to feel like that and you're not crazy.'"
Learn more about coping with the side effects of cancer treatment:
- Lymphedema Education
- Bald and Beautiful (hair loss)
- Clearing the Mind: Coping with Chemobrain
- Life After Treatment (anxiety)
- Psych Oncology Program
- Symptom Management Program