need to know
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Mark Burkholder photographed the declining health of his wife Paige, who was diagnosed with a rare form of liver cancer at 32
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Burkholder told People magazine that the couple wanted to chronicle the “more raw and honest part” of cancer progression, rather than the “heroic battle” it is often portrayed as
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He now encourages other caregivers to share “radical honesty about this disease”
A widower has spoken out about losing his wife to cancer and why he chose to film her deteriorating health over three years.
Mark Burkholder’s wife, Paige, was diagnosed with a rare form of liver cancer in 2022, months after the couple moved to the San Juan Islands, a small archipelago off the coast of Washington state. Paige, a history teacher, got a job offer there.
“The plan for moving here was to reconnect,” Burkholder, a writer and marketer, tells PEOPLE of the 2021 move. “After we moved here, she started having symptoms you wouldn’t think much about – some stomach pain, a little back pain, and then it started getting worse.”
As time went on and the pain got worse, she went to her doctor for a scan.
Courtesy of Mark Burkholder
The day she found out about the scan, she met Mark at a local coffee shop. “I remember looking out the window and seeing her face,” he said. “I knew immediately something was bad.”
A scan revealed a mass on her liver – which doctors said was “a tumor the size of a softball… almost certainly cancer.”
“It’s fast and it’s aggressive,” Burkholder told People. In September 2022, Page was diagnosed with cholangiocarcinoma, a rare cancer of the bile ducts in the liver. When she began treatment that December, the tumor was as big as a football.
Courtesy of Mark Burkholder
Paige’s first chemo session was around Christmas. “We drove through blizzards, whiteout conditions.” Burkholder said he remembers watching the snowflakes fall as his wife called people, “twirling it a little bit and telling them, ‘This is a cancer and I’m going to live with it.'”
“After one or two phone calls, I sat next to her and I said, ‘You know what’s going on — this is the end of it, right?’” he said. “She is creating hope for herself and for them. In my mind, my role as her caregiver is to live in that reality.”
That’s when Burkholder began thinking about sharing an honest look at cancer. “A lot of what we see with cancer, it’s like a gesture, like ‘Warrior!'” he said. “But when you’re home alone and you’re curled up on the couch crying in agony, and then you see someone online who was just cherry-picked on a day when they were feeling good, God, it’s really isolating to see the content that people share, and the narrative that they attach to it about cancer.”
“It’s sort of portrayed as a heroic struggle – but I think it was actually more like trench warfare in World War I: you’re in the trenches for months and you can never sleep because bombs are going off. There’s gunfire all the time.”
Courtesy of Mark Burkholder
Burkholder began filming their journey together: Peggy had terminal cancer and he was a caregiver—but they didn’t post anything online.
“The parts we really wanted to share were the more raw and honest parts, and it’s hard to share that on the road. When we were feeling good and thinking about recording something, we didn’t want to use that time to fall back into the pain we just went through a month ago.”
“[Posting] It wasn’t until she died that it was basically over,” he said.
Page posted his first TikTok on December 13, three days after the 35-year-old Page died at home.
Courtesy of Mark Burkholder
The first post has been viewed nearly 250,000 times. In another TikTok, which has been viewed 1.2 million times, Burkholder shared how he dealt with their dog Olive’s death. When he described her cancer as “aging on fast forward,” the TikTok was viewed nearly 2 million times. As Burkholder compiled the reactions of others who had lost loved ones to cancer, he realized the story he wanted to tell was a story about caregiving.
“A lot of times, caregiving is just sitting on the couch 24 hours a day because Paige will pass out or she’ll be in pain. When she’s conscious, I want to be with her and when she needs something, I need to be there,” he said.
“The hard part about nursing is being there and available 24 hours a day. To me, the focus on nursing is just because we talk so much about cancer and supporting people with cancer, and I just didn’t see a lot of the reality of nursing, especially the mental and physical toll that 24-hour care takes.”
“Every cancer journey is so unique,” he said. “I don’t think I can give any advice about fighting cholangiocarcinoma. I actually don’t know much about cholangiocarcinoma. What I do know and what I can offer support is that there is.” He said he also wanted to offer functional advice, such as how to write “an email to your doctor that’s penetrating and clear and not just dragging it out for three days with another question from the doctor.”
He wants to share a “field manual” on how to get people to accept their help: “Hundreds of people will message you and say, ‘Let me know if there’s anything I can do.'” OK, you know what you’re supposed to do: Build a website with five links to food trucks, GoFundMe, Amazon wish lists, and whatever else. “
As he explains, “We need support, and if everyone in your life is willing to be supportive but doesn’t know how to be supportive, all that support disappears, and I think that’s what happens 99 percent of the time.”
Courtesy of Mark Burkholder
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But, as Burkholder tells People, his overall message is “radical honesty about this disease.”
“In a weird way, if you show too many heroic warriors, you pay a big price,” he said. “Everyone says, ‘Well, they’re just a strong cancer warrior. They don’t need help and support.'” But if you’re willing to be honest about how scary this process can be, people can actually help you and understand that you need help. This is my mission. “
Bereaved people reacted strongly: “Everything Paige and I thought was true,” he said. “People are suffering and everyone is lost… It’s a huge heartbreak for me.”
Read the original article on People
