Caregiver Solutions - Summer 2017

Look Good, Feel Better

Larissa Cahute 2017-06-09 04:34:52

Adriana and Emily: A mother-daughter team battling cancer together When Emily Lombardo’s teenage daughter was diagnosed with leukemia, she felt numb. “Nothing really registered when I was told the diagnosis,” says the mother of two from her Toronto home, looking across the room at her now 20-year-old daughter, Adriana. “‘Numb’ is the only word I can think of.” The weekend before, Adriana, then in grade 12 at St. Bishop’s College, had attended her semi-formal on Friday night and gone into work on Saturday and Sunday. There were no signs of illness until she suddenly felt short of breath at soccer tryouts the following week. They rushed her to the emergency room at St. Michael’s Hospital, where, after a series of tests, the doctors said it was cancer. “As a parent, that’s hard to accept,” says Emily. “Letting go of control and handing my daughter’s well-being over to the doctor, who was a total stranger, was extremely difficult for me.” Adriana’s cancer journey has been an “emotional rollercoaster” for them both, but fast-forward two years and Emily and Adriana appear to have daily life down to a science. Adriana completed chemotherapy in January, and is now recovering from a total hip replacement that she had in March—something that, unfortunately, was desperately needed because of the damage the cancer treatment had caused to her joints. Adriana enters the room and, as usual, Emily is at the ready with a chair for her to sit in, and a stool and towel to elevate her healing leg. This is only a fraction of her role as a caregiver. She assists in setting up Adriana’s chair, helps her bathe (their “Johnson & Johnson time”) and has even learned how to monitor her Hickman line (a central venous catheter) during treatment. Emily also provides a lot of emotional support. “[My role is] to be there as much as I can,” says the teary-eyed mom. “If I could, I would take this struggle from her, but I know I can’t…All I can do is be there in any capacity she will let me be, [whether that’s] a shoulder to cry on, a person for her to vent with or a sounding board and a friend. After all, I’m her mother.” Both Emily and Adriana have inspiring positivity, but it has taken trial, error and time to get where they are. Here are some of the thoughts they shared. Acceptance Emily’s first step was to find acceptance. In the beginning, she allowed herself to cry. “But I would never do it in front of Adriana,” she says. “If she could be strong, there’s no reason I couldn’t be.” These moments of despair didn’t last long, though. Her advice: “You have to dig deep down and tell yourself to accept and move forward. If you don’t, you will fall into a deep hole—and if that had happened I would have been of no use to my daughter.” Be an advocate Quickly becoming Adriana’s advocate was really important. “As much as Adriana was a grown-up and this was her diagnosis, I tried to make sure the proper questions were being asked,” says Emily. “Nurses and hospital staff are a great resource. I remember saying from day one, ‘I’m not out to be a nag, but I’m not out to be anybody’s best friend.’ I just questioned everything.” Take time to avoid burnout One of the first things Emily learned as a caregiver was the importance of taking time for herself. “You focus so much on what the patient needs…that you put your own needs on a backburner,” she says. “Then, all of a sudden it catches up with you.” One month after Adriana’s diagnosis, Emily “crashed and burned.” She got so sick that she had to sleep in the basement and wear a mask around her daughter. “I was just burnt out,” she says. Today, she enjoys “me time” by going for walks and pacing herself. Adriana’s agrees on the importance of Emily taking time for herself. “If the caregiver is always there,” she says, “they’re not giving the patient their time—even if it’s an hour or so a day. I’m grateful that my mom is there for me, but I do need some space, and so does she.” Communicate The busy mom has also learned that communication is key. “In our relationship, I didn’t want to come across as overbearing or in over-protective mode. It’s that fine balance of, ‘OK, I’m not here to check up on you, but I’m always there in case you need help.’” As a young, self-sufficient woman, it was awkward for Adriana to ask her mom for help with daily activities such as getting dressed—and it was just as difficult for Emily to see her daughter lose her independence. “I couldn’t go into mommy-control mode and say, ‘Let me do this for you.’ Instead it was ‘OK Adriana, let’s communicate,’” she says. The pair still sometime find it a difficult balancing act—even with small things, such as Emily not tucking Adriana’s jeans into her boots properly. “It takes some work, but I think we’re getting through it,” she says. Celebrate milestones As Adriana started to feel better, she wanted to go for walks, take drives, meet up with friends and even go to college. Part of Emily worried, but she instead decided to celebrate. “For me, these were milestones,” she says. “Adriana was starting to get her independence back.” Advise rather than instruct As Adriana’s strength returned, Emily also learned that she can’t make decisions for her daughter. For example, just as she was diagnosed with a collapsed hip, Adriana was set on starting her first semester at George Brown College. “I could not be the one to say to her she couldn’t go to school,” says Emily. “It would have been so easy to pull ‘the parent card,’ but she would have resented me.” Instead, she stayed quiet and let Adriana figure it out for herself. In September 2016, Adriana’s hip was stable enough for her to attend classes, but her condition worsened rapidly. By December, it was clear she needed to focus on healing. School was put on hold. Find patient support groups and resources Emily suggests that those in a similar situation access the available resources and support groups. In their case, Emily and Adriana spoke to The Adolescent & Young Adult (AYA) Oncology Program at Princess Margaret Cancer Centre. It was there that they found out about Wellspring and programs such as “Look Good Feel Better” (https://lgfb.ca), which hosts beauty workshops in cancer centres across Canada to teach women and teens with cancer the tools and techniques to alleviate the appearance-related side effects of the disease and its treatment. It was a godsend for both of them. “I remember just sitting back as a caregiver and seeing the smile on Adriana’s face when it was her turn to be the model,” says Emily. “They taught her about makeup and how to tie a scarf—she looked empowered. These support systems…more people need to know about them.” And also develop a caregiver support system As a caregiver, Emily also needed assistance. Although she was told to ask for help or seek therapy from the get-go, she didn’t think she needed it. “My focus was on Adriana,” she says. “Then, as time went on, I met other caregivers and that was my time to start talking.” Emily would strike up conversations with other moms in the hospital waiting room or kitchen. They compared stories, and shared a few laughs and tips for dealing with treatment side effects. They talked about their feelings and how they were coping. Focus on today Although Adriana rang the Bravery Bell at Princess Margaret Cancer Centre (signalling the end of treatment) in January, the doctors have noticed something in her blood that may signal a relapse. As she recovers from her hip replacement, her case is being reviewed. Emily and Adriana are handling this news with their signature positivity. They aren’t planning too far ahead—Adriana’s still unsure when she’ll return to college. Right now, their focus is living in the moment. “You can’t stop living,” Emily says. “If there’s that slight risk that it’s come back then we’ll deal with it head on. And we’ll certainly celebrate if it hasn’t.” Editor’s note: Emily Lombardo’s daughter Adriana was diagnosed with cancer at 17 years old. She underwent two years of chemotherapy, which she completed in January. She received a total hip replacement in March due to the damage the treatment caused to her joints. She’s currently recovering at her home in Toronto, under Emily’s care. Larissa Cahute is a Communication Associate with Look Good Feel Better. As a former journalist she believes everyone has a story worth telling. She shares the inspiring stories of the women and survivors she meets through LGFB. Quick FACTS 99,500 Canadian women were diagnosed with cancer in 2016. 2/5 Canadian women are expected to develop cancer in their lifetime. 1,500 LGFB workshops are delivered each year. 10,000 Women participate each year.

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