Advocating from Alaska (Part 2)

Read the first part of Kelly's story in Advocating from Alaska (Part 1).

When the biopsy came back as positive for lung cancer, there were more tests, including an MRI and PET scan.

“And waiting and waiting,” she says. “I didn't have a primary care doctor, so I didn't have one doctor who was navigating everything. Before I knew it, I had four doctors; but they weren't completely communicating with each other, and things were turning into a nightmare trying to figure out what to do. One doctor recommended surgery. Another advised against it. I was alone 600 miles from home. I didn’t have anyone around who could help during recovering from lung surgery. That was a concern. Plus, my lung function test was not great. They said if I had surgery, I would probably be on oxygen for the rest of my life.

“Even though I had this 5-centimeter tumor in my lung, I wasn't feeling sick. I wasn't feeling distressed in my breathing. I wasn't coughing a lot. Other than my clubbed fingers and my legs swelling from time to time, I was feeling OK.”

Making a treatment decision

Eventually, Kelly decided to undergo radiation, chemotherapy, and immunotherapy.

“I flew to Anchorage on January 12th and was there until April 18. I was there — alone — away from home for three months. I didn't even realize at the time how long I would be there. I just went into all this blindly. There were times I was thinking, that maybe I could go home for a week and wait until the next test or scan. But with the weather back home, you just don't know if you're going to be able to get back for your appointment.”

Let's talk about access to care

Kelly’s husband traveled to Anchorage to see her three times while she was there. “My kids were also able to fly into Anchorage to visit me while I was there,” says Kelly. She completed chemotherapy and radiation treatment in mid-April. Then immunotherapy treatment began in May.

“That involves flying to Anchorage every three to four weeks, staying overnight in a hotel for two nights, then returning home,” she says. “I am on my husband’s state employee’s insurance plan. We are not sure how everything will work out, but from what I understand it only covers a portion of the hotel costs. I'm going on a wing and a prayer hoping that treatments work.”

We hear a lot about access to care, but few must go to the lengths Kelly does to access care. Who else has to fly 600 miles to reach their nearest cancer center? Kelly and her family could move to have better access to care. But Popof Island is where Kelly went to high school. It’s where she met her husband. It’s where they raised their children. It’s their home.

A unifying call to advocacy for all Alaskans

Kelly’s story is compelling and insightful to what Alaskans face when they are diagnosed with lung cancer. When I met Kelly, via Zoom, I asked her to share her story with legislators in Alaska and ask them to increase funding for the Lung Cancer Research Program, under the Congressionally Directed Medical Research Program. Even though Kelly was going through so much, she agreed to help. She shared her story about how lung cancer has impacted her life and how urgently we need more lung cancer research funding.

Kelly was advocating for all Alaskans impacted by lung cancer, in tiny villages and islands throughout the state, as well as in Alaska’s large cities, even as she struggled with the challenges of cancer, treatment, and access to care. Kelly has a wonderful caring heart. Her voice spoke for the thousands of Alaskans impacted by lung cancer...not only patients but everyone who knows and cares about them, from the inner circle of family members to neighbors and coworkers.

I believe Senator Lisa Murkowski’s legislative assistant was genuinely touched by Kelly. I know I was. I am grateful for the opportunity to get to know Kelly and to share her story with others.