At end of life, one patient tries to help her family go on
January 23, 2013 | by Roberta Nichols
Diagnosed with breast cancer in 2008, Wilkins underwent a double mastectomy, and the disease temporarily retreated. Yet it returned, reappearing in her bones, lungs, liver and, most recently, her brain. Now, says Wilkins, the time for aggressive, grueling treatments is over. “We’re trying to keep me out of pain and make the time I have left more special for my boys.” The 37-year-old Apple Valley, Calif., resident faces the new year knowing it could be her last – yet she's determined to help her family flourish without her. Through City of Hope’s Legacy Program, a team of social workers, child life specialists and psychologists are helping Wilkins and her family prepare for that transition. Supportive care staff helped Wilkins and her family deal with the emotional side of her illness. “They helped me to know what to say to the kids and how to say it.” She and her husband, Brent, learned to hold family meetings that updated their boys without unduly frightening them. She initially focused on powering through treatments to save her life, but City of Hope's legacy program caused her to stop and reflect on the meaning of her life and what she wanted to leave behind.
This process helped bring order to a chaotic time. “I was going in a bunch of different directions,” she recalls, simultaneously dealing with sadness and grief while telling herself she had to get through this. “Putting all that together with them, sorting it out, understanding each phase of it, made a big difference,” she says. She was given workbooks that asked questions about her past – growing up, marriage, favorite vacations – “things I wouldn’t think to tell my children,” says Wilkins. For instance, the questions prompted a memory of her grandmother using a rubber scraper to make sure every drop was emptied from a jar. Writing down memories like this “waste not, want not” lesson could help her sons connect to their past and guide their future, believes Wilkins. As a project within the legacy program, she and her boys made “comfort pillows.”
Child life specialists collected painted handprints from Wilkins and each of her boys that were imprinted onto four pillows, along with her personalized messages to them. Wilkins also received a bag for each of her children filled with workbooks and personal items that she has put away for them. After she’s gone, they’ll be given the bags “to help them get through the hard time,” said Wilkins.
'I want them to have a piece of me' Wilkins likes the idea of preserving her memory – and influence over her family – by leaving tangible mementos behind. “Unfortunately, I’m not going to make it through this process, but that doesn’t mean I can’t leave behind things for the children and my husband to let them know how important they were to me. I want them to have a piece of me – to understand and to think back on how important they were to me and to live their lives based on ‘what would Mom say and do.” Throughout her illness, Wilkins focused on preserving her family’s routines, instead of on self-pity. “It was important for me for my kids to not see me live differently. I didn’t want to change their world.”
While at work in a dental office, she used her breaks to change her post-surgical dressings, and her lunch hours to undergo radiation treatments. When her hair began falling out during chemotherapy, she waited until her husband was at work and kids were in school, then shaved her head so she could start wearing a wig. No matter how tired Wilkins was, she still drove her kids to baseball practice and showed up at their games. Through the past few years, she has made time to spend with each of her sons (now 6, 10, 14 and 20). She and the older boys might go out to shop, have lunch or just hang out. “The little ones want to go out and play. I can’t hit balls or chase anything anymore,” she says, but she can pilot her walker to the backyard to watch them hop on their pogo sticks or play catch. She is worried her 6-year-old might not remember her, so whenever he wants to hear a story, she obliges – even if she’s resting. “I don’t want to waste a second. I don’t know how many of those opportunities I’m going to have so I’ll say, ‘Hop up and we’ll read.’” A few months ago, Wilkins and her husband called a family meeting that left everyone in tears. “We didn’t sugarcoat it,” she said. “We just told them, ‘Boys, this is really hard for us to do, but it’s time you know Mom doesn’t have a whole lot of time left. So unfortunately we are not going to pursue any other treatments.
'This time is a gift to everyone in your life' “It’s time that we try to all just be here for each other ... just enjoy every day we have. Even if it’s a bad day we’ll turn it into a good day – hug it out.’ I always tell them ‘hug it out,’” she says with a smile, “to get through that not-so-great time.” She and her husband dreamed of spending retirement traveling in their RV with their grandchildren. Though that cannot happen, she hopes her husband and boys will create new traditions in her memory, perhaps taking camping trips.
Cancer may have robbed her of a long life, but it has given her a gift. “I’ve been given time to do this that a lot of people don’t have – extra time to have special moments with my family. This time is a gift to give to everybody in your life – and tell them how you feel about them.” The conversations – even the uncomfortable ones – have deepened her connections to her family, Wilkins says. “I do feel like we have gotten a lot closer. I have to kind of redo the way I am talking to them – and have to discuss with them things I never did before. ‘Mommy may not be with you, but know that when you’re going through a tough time, I’ll still be in your heart.’” What does she want her sons to know about her? “They were the reason I woke up every day no matter how bad I felt; the reason I had every one of these treatments, every one of these medicines. Days I felt I couldn’t take another step, I took that step because of them ... I don’t want that to be a guilt thing for them,” she quickly assures. “I just want them to know that they were that important in my life.” She shared some concerns with City of Hope staff such as psychologist Jeanelle Folbrecht, Ph.D., and social worker Courtney Bitz instead of her family.
“Having staff, doctors here for me was a huge help. I could come to them, unload, tell them what I had a hard time with … and they can talk me through it.” She says the legacy process taught her a “huge lesson. I was always a very strong-willed person. I wasn’t going to complain or tell you what I thought of you; keep it in, hold it tight, power through it. With teachings, books, talking and working with doctors, I have kind of a different approach – I will stop and give people a hug and let them hug me." People tell her they have witnessed a dramatic change in her “that has really opened me up and taught me what I’m trying to teach my kids – which is, we don’t have a lot of time. We have to stop and tell these people in our lives what we think of them, how much we love them, and the special things they did to change our lives.”
'How can you love somebody like this?' Wilkins says she sometimes finds it hard to look in the mirror and be reminded of cancer’s toll. Steroids have bloated her body and, as her spine has compressed, she's lost five inches of height from her 5 ft, 3 inch frame. In darker moments, she asks her husband, whom she married when they were in their early 20s: "How can you love somebody like this?" His reaction has become her mirror. “He says, ‘That’s what we do.’ He just continuously repeats it – and believes it wholeheartedly. ‘That’s what your vows say and that’s how it is.’ And that’s what gets me through it,” she says. At her sons’ requests, she already gave them the personalized comfort pillows that now decorate each of their beds. When they are older, each will receive her specially engraved pocket watches and her letters filled with her advice and aspirations for them. “I even go as far as how I want them to be with their wives and kids – to not forget to enjoy every moment even though it might be a difficult moment for you.” Wilkins hopes “they’ll learn to be selfless, do what’s right, appreciate stuff they’re given, the relationships they have with people – and that they learn to be good, strong men.” She says the legacy work she and her family have done “doesn’t make the end any easier. It’s not going to take their hurt away or make them not be sad, but I think in the long run, after time goes by, they’ll see that was an important thing for them to do.” In the meantime, though, she is home again with her family – enjoying the rhythm of their daily routines and helping them prepare for the coming year.