“If I couldn’t be at home, I wanted to be at the Cross,” says Nancy Luyckfassel, a former inpatient at Edmonton’s Cross Cancer Institute.
Those are words Luyckfassel never expected to say, but in December 2015 everything changed for her and her family. She was an elementary school principal in Fort Saskatchewan, Alberta, with a very busy life. A mother of two teenagers, a wife and an avid runner, she began to feel more fatigued than usual from her day-to-day activities so she went in for testing.
– Nancy Luyckfassel
A shadow in an X-ray and various other tests determined she had precursor T-cell lymphoblastic lymphoma. She had a mass of lymph nodes in her chest measuring 25 by 18 by four centimetres that pressed on her lungs and wrapped around 70 per cent of her heart, while also going up the vein in her neck. All that pressure caused her lack of energy and breathlessness. “It’s an aggressive, rare non-Hodgkin’s lymphoma,” Luyckfassel explains. “It was Stage 3 and they wanted to start treating it right away.”
She remembers the consultation day: “You sit and listen to what it’s all going to look like and the reality of that sinks in,” she says. “For me, the reality of it being inpatient treatment instead of outpatient was upsetting.” Due to the intensity of her treatment, she needed to stay at the Cross for monitoring, but as she would soon discover, it would be a place of great comfort to her.
She was admitted to the Cross only a few days before Christmas last year. Treatment included six cycles of about five days of intensive chemotherapy. On a 24-hour basis, she either had the chemotherapy drugs, or drugs to help her get through the chemo, pumping through her system via an IV. She estimates she spent at least 40 full days at the Cross between December 2015 and May of this year.
At the Cross, inpatients receive treatment on the third and fourth levels. Luyckfassel cannot say enough about the special lounge spaces – the Lion’s Den and Lite House on the third floor – that made such a difference for her and her family. Those rooms have recliners, TVs, books, movies, coffee tables and chairs. “For my family, that’s where we spent Christmas morning,” she says. “Often when I had guests, that’s where we would stay because it felt like being in your living room and not in a hospital space.”
The sleeping chairs in the inpatient rooms turned into cots for family and friends to stay overnight. This was a great comfort to Luyckfassel when she said goodnight to her husband on Christmas Eve and wondered what the next day would bring. He had to head home to be with their 17-year-old son and 19-year-old daughter. On Christmas morning, she awoke at 5:30 a.m. to see her daughter snuggled into the sleeping chair by her bed and it warmed her heart.
She also took comfort in the services available to help her deal with the hair loss that came along with her treatment. “A lot of people don’t think about anything other than the hair on your head and you forget simple things like eyelashes and eyebrows,” she says. “I lost all the hair on my body, and having no hair in the winter is pretty cold.”
A few kind gestures from staff and volunteers helped ease her discomfort with donated toques and beanies as well as a homemade afghan on Christmas Eve for all inpatients there overnight. The heated blankets were also a welcome treat. Wig Services at the Cross allows patients to sign out wigs for free, and Luyckfassel took advantage of the opportunity to try a few new looks out. These patient supports and services are funded by the CCI Volunteer Association.
She also took part in the Look Good, Feel Better program, which the Canadian Cosmetic, Toiletry and Fragrance Association (CCTFA) started in 1992 to empower women with cancer and help them manage the effects of treatment on their appearance. A free, two-hour workshop is offered across the country, and twice a month at the Cross.
“As you go through chemo, besides your hair falling out, your skin changes because the chemo kills good cells as well as bad,” Luyckfassel says, explaining that it affects your skin tone and may cause dark circles t0 appear under your eyes. “These ladies showed us how to do makeup for our new situation.” Patients are allowed to try all the products and also take a bag of free products with them.
An enhanced care approach at the Cross involves many partners. “With enhanced care, we’re understanding that cancer treatments have gotten better and there is greater survivorship and people are living longer with cancer; therefore patients’ needs are going beyond what traditional cancer treatments are all about,” says David Dyer, executive director of the Cross Cancer Institute. “A lot of our enhanced care services help to support those other needs in addition to the traditional chemotherapy and radiation care.” Donations to the Alberta Cancer Foundation support many enhancements to patient care at the CCI and throughout Alberta.
Dyer cites some additional programs that improve the quality of life of patients and their families. They include the Healing Arts Therapy program that helps patients and their children adjust to the cancer diagnosis through art; Learning Through Love which provides tours around the Cross for children of patients to help them gain a better understanding of what their parent will be experiencing; and Oncology and Sexuality, Intimacy & Survivorship (OASIS), a program for breast and prostate cancer patients and their partners to adjust to body and libido changes.
The nursing staff also played a big part in her comfort and familiarity, Luyckfassel says, adding that she could name 15 nurses off the top of her head along with something about each of them. “They care more than any nursing staff I have ever come across in my life,” she says. “The Cross … provided me with safety and familiarity with my treatment and there was that connection piece – they knew everything about me and it was comforting to go back to the Cross.”
Luyckfassel had the unusual experience of accepting a job offer with the Alberta Teachers Association (ATA) as an executive staff officer right before her diagnosis. “The ATA still accepted me and I was able to work it into my recovery plan that I would get treatment for a week, recover for a week and then go to the office for a week,” she says. It helped that the Cross offers free Wi-Fi, which allowed her to review anything work-related while staying at the hospital.
On May 2, Luyckfassel was discharged from the last round of her inpatient chemotherapy. On May 27, her family crammed into the consultation room to hear what the PET scan results were from her oncologist, Dr. Michael Chu. Thankfully, the scan showed that she was in complete remission and could move onto a maintenance treatment plan.
“Because it’s a very aggressive lymphoma, the plan is that I will still get treated every month for the next two years,” Luyckfassel says. “I’ll go in once a month for IV chemo then I take two weeks of chemo pills and then take one chemo pill a week and then I repeat that every month.”
This maintenance program allowed her to attend her son’s high school graduation on May 28. “There were a lot of happy tears that day,” she says. “Though I’m wearing a wig in his graduation pictures, I’m there with him and that’s all that matters.”
A Quiet Respite
In 2014, the Philippine Bayanihan Association in Alberta (PBAA) learned that the Cross Cancer Institute was in need of donations to complete the renovations of a Family Quiet Room. The PBAA’s executives decided to donate $100,000 to the cause in November 2014 through the Alberta Cancer Foundation from money raised by its more-than 200 association members.
Tony Briones, incumbent president of the PBAA says, “The CCI needed funding for [the Family Quiet Room] to provide a respite for those who are in the last journey of their lives and I think that it will give extra comfort for visitors and families of the patient.”
The intent of the Family Quiet Room is to provide families of those patients who are acutely ill or palliative, a form of respite. Often there are numerous family members at the bedside who take shifts to be with the patient, allowing others the opportunity to rest.
Renovations to the existing L-shaped Family Quiet Room began in March 2016, which was previously used as office space located on Station 40 at the institute.
It will comfortably hold six to eight people with the capability of sleeping five.
The space also has a table where families can gather to eat or play games and also has a 42-inch TV.
The room was scheduled to open again in August 2016.
Run for Fun
Nancy Luyckfassel, along with family, friends and community members, celebrated her 46th birthday on September 10, 2016, in Fort Saskatchewan by taking part in a Fun Run (5, 10 or 15 kilometres) called Kickin’ it Nancy Style with all funds raised going to the Alberta Cancer Foundation. You can still donate here: https://albertacancer.ca/kickinitnancystyle