Why Observing Treatment Milestones is an Individual Decision

CURE, Winter 2013, Volume 12, Issue 4

Setting goals during treatment can help patients to the finish line.

In October 2012, Stephanie Waxman’s goal was to weather each day after undergoing a bone marrow transplantation earlier that month to treat her chronic myeloid leukemia (CML).

The 31-year-old San Francisco resident and marathon runner had received a diagnosis of an advanced stage of the blood disease—called blast crisis—several months before. As she lay in her hospital bed at the University of California, San Francisco, her friends and family teamed up to finish a nearby marathon, raising funds for the Leukemia & Lymphoma Society.

Last fall, Waxman was not yet strong enough to run. But she had a walking milestone: She joined her loved ones in that same San Francisco race to celebrate the first anniversary of receiving a stranger’s stem cells to replace her own abnormal cells. More than 60 friends and family members joined “Team Stephanie” for the race.

She says it meant so much for her to be able to go “from being in a hospital bed and hardly able to walk to walking a half marathon.”

Whether it’s ringing a bell in the chemotherapy room or taking that overdue trip, people with cancer find ways large and small to commemorate the end of treatment, a “cancerversary” or simply the completion of a daunting stage. It’s understandable that many survivors want to recognize or reflect on their treatment milestones—doing so can help them derive larger meaning from their cancer experience, psychologists and other clinicians say.

“A lot of people find that they’ve been given a second chance at life,” says Yvette McLin, an assistant clinical professor of psychiatry in the department of supportive care medicine at City of Hope in Duarte, Calif. Consequently, they want to celebrate, she adds.

Still, the decision to recognize or celebrate milestones is highly personal and might not be suitable for everyone, McLin says. Some patients might not see any clear-cut endpoint, as they face ongoing treatment. Others, even if their scans look good, might be concerned that festivities could jinx fate and a shot at long-term health and survival. Also, the dates of diagnosis or other cancer milestones can sometimes trigger memories fraught with anxiety and emotion. In some instances, patients opt out of celebrating milestones altogether, preferring instead to avoid any reminders of “what has been seen as the worst aspect or period of their life,” McLin says.

Crystal Brown-Tatum wasn’t in much of a mood to party after undergoing nine months of aggressive treatment—surgery, radiation and chemotherapy—for her stage 3A triple-negative breast cancer. It was nearly Christmas by then, and Brown-Tatum was, understandably, wiped out.

But when the five-year anniversary of her 2007 diagnosis rolled around, she pulled out all the stops,gathering some 50 friends, family and fellow cancer survivors to a Shreveport, La., coffee shop for a “screw cancer” party. The cake featured pink icing and two large screws on top. Screws also adorned the table centerpieces and cake pops.

Given that survivors use far less printable expletives in reference to cancer, Brown-Tatum thought that the theme was pretty much on target.

“It was just a fun play on words,” says the 40-year-old, who is now cancer-free. “The hardware theme was really to make people laugh,” she says. “That’s what I wanted people to do: to laugh and to feel that it was OK to be lighthearted about something that’s really serious.” Teresa Deshields, a clinical psychologist who works at Siteman Cancer Center in St. Louis, points to the challenges of celebrating when patients are coping with chronic or advanced disease.

As one example, she uses a common routine at many cancer facilities, in which patients have the option to ring a bell, pealing in the completion of chemotherapy or another treatment phase. For patients with late-stage cancer who are coping with chronic treatment, that type of ritual is “almost like rubbing salt in a wound,” she says.

In other cases, what individuals desire might not match their capabilities, at least at that point in their cancer experience, Deshields says. She recalls a patient who postponed a celebratory dinner, saying that all food still tasted salty. He preferred to wait until his taste buds had improved sufficiently to enjoy a fancy meal, along with a glass of fine wine.

Waxman experienced a few setbacks in the weeks after her transplantation, including two hospital admissions to treat graft-versus-host disease, a serious complication. So she and her family counted down the days leading up to the 100-day mark in mid-January, considered a key milestone pointing to transplant success. Her father roasted a turkey for a festive dinner, but Waxman didn’t have much appetite at that point and was still somewhat isolated to reduce her infection risk. Shortly after, though, she relished her first social outing with a core group of friends. Typically, they would all gather to ski in Utah. This year, her friends traveled to Waxman instead, toasting her health at a Mexican restaurant.

The likelihood that a milestone celebration can produce negative emotions depends upon a number of factors, among them the individual’s own pre-cancer coping style, prior history of traumatic experiences— cancer-related or not—and history of a complicated, difficult or prolonged clinical treatment course, McLin says. The survivor involved may have had a long, difficult treatment course involving multiple complications, prolonged hospitalizations and painful treatment encounters.

Also, those with less social support from friends and family can be more vulnerable to negative reverberations, McLin says. She adds that, while the severity of the disease certainly can’t be ignored, how patients perceive, frame and process the potentially threatening aspects of cancer is very important. Furthermore, many people benefit from learning to reframe their short- and long-term views of their cancer in a positive manner.

“For example, while many, understandably, dread tough cancer treatments, such as chemotherapy or radiation, there are some who are able to maintain positive perspectives throughout their treatment because they have learned to view treatment as ‘a means to a successful end’ and are able to envision a life with deeper meaning and improved relationships after successfully ending treatment,” McLin says. “So they learn to channel potentially threatening aspects of cancer in positive ways. And these individuals are going to be more likely to choose to formally recognize or celebrate their important treatment milestones as a way to reflect on their experiences and to express gratitude to caregivers and loved ones who supported them along the way.”

Maybe it’s enough to live your life and be good to the people who helped you. And maybe you just help the next person in your circle who has cancer.

Sometimes, cancer survivors could feel pressured toplan large, elaborate celebrations to recognize cancermilestones. McLin emphasizes that the feelings andemotions individuals may have about celebratingthese milestones are unique and should reflect thatperson's values, personality and authentic preferences.For survivors who are reluctant to have formal"celebrations," McLin encourages them to considerother ways to observe or reflect upon the passage oftime and treatment. Set aside time to mull over thechanges that cancer has wrought, both positively andnegatively, she advises. Consider writing in a journalor revisiting prior journal passages to reflect on lifechanges and help sort through a range of emotionsoften experienced during milestone anniversaries.

Similarly, Deshields suggests that survivors cutthemselves a break. Not everyone needs to launch afoundation or run a marathon, says the psychologist,who also is a board memberof the American PsychosocialOncology Society. She advisesbeginning with more modestexpectations—ones that can bebuilt upon later.

"Maybe it's enough to live your life and be goodto the people who helped you," Deshields says. "Andmaybe you just help the next person in your circle whohas cancer."

For Brown-Tatum, the five-year anniversary of herend of treatment was the ideal time to throw a party,as well as to spotlight the personal impact of breastcancer. She and three other friends, also fellow survivors,shared their stories at the party. "My hair was longlike it used to be; my weight had gotten back to where it used to be," Brown-Tatum says. "I finally felt wholeagain. It took five years for me to get to that point."

Waxman also feels as if she is reclaiming her prediagnosislife. She has returned to her public relationsjob and moved back into her apartment.

One more milestone she'd like to achieve:Connecting with her mystery donor, a 27-year-oldman. A year after transplantation, confidentialitycan be lifted, if both parties agree. "I think about mydonor every day," Waxman says. "He saved my life. Ihave his blood in me."