Cancer survivors juggle recovery, risk of infection amid pandemic
Delayed check-ups, higher anxiety strike those who are already dealing with with tons of stress
With an underlying health condition and a 3-year-old child to care for, Kihei resident Katherine “Kat” Barthels already had a lot on her plate when COVID-19 hit the state.
As a two-time melanoma cancer survivor and with no access to her regular in-person dermatology appointments amid the pandemic, more stress and anxieties piled on.
“I need to see the dermatologist every three months for skin checks to make sure that there are no spots that need (to be) biopsied and if there are any suspicious moles, they will be removed,” said Barthels, who’s also an alumnus of the Maui Cancer Wellness Retreats. “I am doing skin checks at home by checking my body from head to toe for any new spots or current moles that have grown or changed.”
Barthels’ last appointment was canceled by the dermatology department due to health restrictions and protocols, and she was also supposed to get an ultrasound to check her lymph nodes. Melanoma can travel through the lymphatic system and attack lymph nodes or other organs in addition to the skin.
Her next in-person appointment isn’t scheduled until the end of June. In the meantime, she’s been staying home and utilizing telehealth to speak with a therapist.
“I am not comfortable with going in for doctor appointments just yet, however this month I will need to for pain management and massage therapy sessions,” she said. “Overall, I am quite anxious. For one, my oncologist left the island in May and they have not been able to find a replacement for her. As a cancer patient, our oncologists are a crucial part of our care team.”
Since Barthels is not receiving active treatments anymore, oncologist visits are not critical at this time, but she worries for other survivors who need their oncologists on a regular basis.
Undergoing cancer treatments, surgeries, recovery and managing symptoms can oftentimes feel isolating and scary, she added, especially during the COVID-19 pandemic.
Her biggest concerns have been the increased risk of contracting the virus, and the recent adjustments to protocols and personal protective equipment availability at the hospital.
“Many of the workers that tested positive at Maui Memorial were part of the cancer ward,” she said. “I know that the doctors and nurses have been fighting for a safer environment this entire time too. I am so grateful for all of their hard work inside and outside of the hospital to help protect themselves and their patients.”
Between 50 to 90 percent of all cancer patients experience anxiety and/or depression after undergoing treatment, and 30 percent have long-term anxiety even after treatment due to the emotional trauma, according to Dr. Bridget Bongaard, the director of Maui Cancer Wellness Retreats.
“Cancer survivors have had the emotional as well as physical trauma from working through their cancer journey and treatment,” said Bongaard. “Many find it hard to trust their bodies again after developing cancer and understandably are always on the alert for signs of a possible recurrence.”
Now add on the threat of the coronavirus among those with compromised immune systems. The emotional burden and worry increase for someone who has or had cancer, Bongaard added.
There are also stresses in delayed treatments or appointments, as well as with social isolation and “no physical contact” protocols during quarantine.
Due to COVID-19, Maui Cancer Wellness Retreats also canceled its annual three-day retreat. Bimonthly day retreats on Maui and Molokai were postponed until further notice.
“The impact of not being able to do the things that would have been used to rebalance one’s emotions due to quarantine also salted the wound,” Bongaard said. “We now see the gift of nature as a healing force, the gift of gathering of friends, the gift of exercise and movement, the gift of loving touch in a new light.”
Kay Anderson, a nurse with Maui Cancer Wellness Retreats who is also a metastatic breast cancer and stage four liver cancer survivor, was hospitalized at Maui Memorial Medical Center in late March.
The Maui Memorial cancer ward stopped all visitation during this time due to the coronavirus. Her roommate was a newly diagnosed cancer patient, and “not having her support person with her during this time was very difficult,” Anderson said Thursday.
“The telephone is not the same as holding your hand and being by your side as you go through the early stages or even the full journey of cancer,” she said. “So this isolation due to COVID-19 certainly had a huge toll on this patient’s cancer journey.”
In her own fight against cancer, Anderson had multiple postrecovery-related complications and needed follow-ups and specialized lab exams. She is no longer on active treatments.
In general, patients may also become overwhelmed from receiving multiple lab tests, MRIs, CT scans, other radiology tests and doctors appointments.
As a result, she said that active cancer patients may experience challenges with physical deformation, pain, body acceptance, nutrition, isolation and overall fears of dying.
Anderson’s cancer treatment consisted of telemedicine conference calls rather than physical appointments to check for tumors. Her cancer specialist appointment on the Mainland was also canceled, leaving her health care in limbo.
However, to help mitigate the stresses among active or recovering cancer patients, alumni of the Maui Cancer Wellness Retreats created virtual support groups.
Cancer survivor Jacky Mulder and Barthels started the Share and Care program, weekly virtual check-in sessions available from 9 to 10 a.m. every Thursday for local cancer “warriors to share their worries, concerns, successes or whatever is on their hearts and minds.”
A second evening session may be offered in the future.
Mulder also holds a light yoga class for cancer survivors every Saturday morning at Imua Physical Therapy in Kihei.
Bongaard also will be providing free “Create and Transform” online classes Tuesdays starting before June 1. The Zoom meetings will provide evidence-based information and tools for coping with symptoms, feelings, relationships and developing a sense of well-being in a supportive community.
Anderson added that the wellness retreats program will also soon be posting a “Living Virtual Library” of 10- to 20-minute videos on its website, as well as on YouTube and Facebook, to announce each topic and description.
They hope to continue these programs beyond the pandemic.
“When the quarantine restrictions were put into place for Maui County, I realized that we would all be at home and need additional support,” said Barthels, who noted that May is Melanoma Awareness Month. “The goal is for our warriors to connect and offer support to one another, and discuss how the pandemic is affecting them.”
For those struggling, Bongaard and Anderson said there is “no need to suffer or go through this alone.” They recommended that patients, survivors or loved ones reach out for help and guidance.
“Tell your story, and we all learn more and can support each other. This is so healthy, even if your story is sad or you feel lost,” Bongaard said. “Learn how to take responsibility for yourself and your feelings, and we will help you find the right tools to personally make a difference in your life and create a better outcome for yourself and those you love.”
For more information about Maui Cancer Wellness Retreats, or to register for a free virtual support class, visit mauicancerwellnessretreats.org. For additional questions, email firstname.lastname@example.org.
* Dakota Grossman can be reached at email@example.com.