When Being Sick Becomes a Full-Time Job

Jessie Creel had to fight for her own cancer care. She describes doctors who dismissed her symptoms, hospice calls while she was seeking surgery, and a clinical trial that left her questioning whose interests her treatment was serving. At End Well 2026, she joins Warris Bokhari, MD, and Lucy Kalanithi, MD, to ask why getting the medical care you need can depend so much on who you know, what you know, and how hard you’re able to advocate for yourself.

For six months, Jessie Creel says, her doctors told her versions of the same thing. She wasn’t a smoker. She was a runner and a swimmer. She was “fine.”

Then a neuro-oncologist friend of hers called to check in and asked why she sounded out of breath. Jessie said she was getting a pedicure.

“What kind of pedicure is that?”

“Just a regular one.”

“You’re going to get a CT tomorrow.”

Jessie paid cash for the scan. Not long afterward, she was diagnosed with stage four lung cancer. She was 43.

On November 12 in Los Angeles, Jessie will take the stage at End Well 2026, a gathering that brings together people from medicine, culture, and lived experience to explore serious illness, caregiving, and what it means to live well. She’ll be joined by Warris Bokhari, MD, a physician who helps patients challenge insurance denials, and Lucy Kalanithi, MD, a Stanford internist who will moderate the conversation. In a planning call this fall, the three of them talked about what it took to get Jessie care, and about the many people who don’t have access to the same help.

“I have an MFA,” Jessie said. She lasted half a semester as a premed. Since her diagnosis she has learned to read her own labs, anticipate the explanations she’ll be given, and arrive with the evidence to question them.

Cart before the hearse

Jessie was seeking surgery at MD Anderson, but her insurer denied the out-of-network care, Warris explained. He spent years inside the insurance industry before co-founding Claimable, which helps patients appeal denials, and he took on her case.

He described the cruelty of the sequence. You find hope. The insurer tells you that you can’t have it. You start grieving all over again.

While the appeal was underway, Jessie said, she was getting calls about hospice and whether she needed a hospital bed delivered to her home. She already had palliative care through City of Hope. She was still seeking access to lung surgery.

The two terms are often confused, and the difference mattered here. Palliative care is specialized support for the pain, symptoms, and stress of a serious illness. It can start at diagnosis and continue alongside treatment meant to cure or control the disease. Jessie could receive it while she fought for surgery.

Hospice is a type of palliative care for the final stage of life. Under Medicare, which many private plans follow closely, a patient qualifies when doctors certify a life expectancy of six months or less. Enrolling means agreeing to stop treatment aimed at curing the terminal illness. Patients can leave hospice and resume treatment. But Jessie wasn’t choosing to stop treatment. She was still trying to get access to surgery.

To Warris, the hospice calls suggested the insurer had already made assumptions about Jessie’s prognosis and what care she should receive. When Jessie described them as “cart before the horse,” he corrected her: “More like cart before the hearse.”

When Jessie called it “cart before the horse,” Warris amended it: “More like cart before the hearse.”

To him, the hospice calls showed the insurer’s hand. He said the documents Claimable eventually obtained referred to Jessie as a “cancer victim.” In his account, the denial was a value judgment rather than a decision grounded in medical evidence , while the insurer searched for less expensive surgeons in Los Angeles who he said could not perform her operation.

Then Warris’s co-founder, Zach, found a provision of California’s Knox-Keene Act that, Warris said, showed the denial was unlawful. Two days later, he recalled, the insurer announced it had located a previous approval and would honor it.

Jessie had the lung surgery. She said her lung function was better afterward than it had been before. Warris recalled video of her running three weeks later.

“When we solve a denial, sometimes we don’t necessarily solve a trajectory,” he said. While working her case, he got to know her husband, her kids, her career. They became friends.

Who gets believed?

Surgery didn’t end the advocacy. Jessie described becoming the first patient in a clinical trial of an experimental mRNA cancer vaccine. When her iron saturation dropped sharply during the trial, to levels lower than she’d experienced during chemotherapy, she said, the explanation she received was perimenopause.

She had seen that coming. “I said, ‘I thought you might say that,’” she recalled, and produced her lab results.

For Jessie, it was another example of having to prove that what she was experiencing deserved to be taken seriously.

Lucy, an internist at Stanford, had a name for what Jessie described: epistemic injustice, when someone’s knowledge or account of their own experience is discounted or treated as less credible. “It’s the idea that you are not a reliable narrator,” she said.

Lucy knows this from both sides of the exam room. Her late husband, Paul Kalanithi, was a physician who died of stage four lung cancer in his 30s and wrote the memoir When Breath Becomes Air. Her own work has since moved from healthcare value research toward storytelling and advocacy. She reflected on how decisions that can feel routine to clinicians may carry enormous weight for patients and their families. What looks like another approval, denial, or signature on a form can determine someone’s future.Their lives also intersected in an unexpected way.When Breath Becomes Air was Jessie’s favorite book before she got sick. It led her to the work of neuroscientist Karl Deisseroth, and through those connections, to Michelle, the friend who would later urge Jessie to get a CT scan and join Jessie’s first oncology appointment by FaceTime.

The price of love

For Jessie, the work of being a patient didn’t stop with getting treatment. As she began speaking publicly about her experience, she found herself taking on another responsibility: helping other people navigate the same system. Other patients reached out wanting details, introductions, and a way to replicate what had happened for her. She started writing partly because she couldn’t have every conversation. An essay on her Substack had drawn some 10,000 reads, she said.

She also met anger from people who had done everything she did and hadn’t gotten the same results. Jessie has been thinking about how to live with that randomness. Asking “why not me” instead of “why me,” she said, opens up more of life.

Her experience also raises an uncomfortable question: What happens to people who do everything right, ask every question, and pursue every possible option, but still cannot get the care they need?Warris described cases in which an approval came too late, including a young man whose lung transplant was delayed by a denial. By the time the procedure was approved and donor lungs became available, he said, the patient’s condition deteriorated, and he died before receiving the transplant.

Insurers, Warris said, will always call these “edge cases.” He recalled asking an insurance executive why they didn’t simply stop denying cancer and transplant care. The answer, he said: “Who do you think would pay for all the extra care?” The assumption baked into that question, he argued, was that the care was unnecessary.

Warris’s answer is to make appealing as easy as filing taxes. He calls Claimable “TurboTax for appeals.” His strategy is to make denials more costly for insurers to sustain: every appeal takes resources to process, and at scale those costs add up. His model is the mosquito: sting them where it hurts until they stop to scratch.Behind that strategy is a larger question about how much responsibility our healthcare system places on people who are already sick, and on the family members and friends trying to help them. Getting care can require an extraordinary amount of time, knowledge, persistence, and often money. Not everyone has those resources, especially in the middle of a serious illness.

When does now begin?

At the time of the conversation, Jessie reported no evidence of disease, meaning her scans showed no detectable cancer.. She was concerned that continuing the trial might be doing her more harm than good, and was weighing its potential benefits and side effects against the life she wanted to live. Repeated trips to Houston for treatment had become another occasion to ask whose needs were being served.

“My human life is more valuable than a data point for a pharmaceutical company,” she said. The question was no longer simply whether another treatment was available. It was whether continuing it was right for her, and how she wanted to spend her time.

She has had to decide, again, where her now begins.

What she wants people to know is practical. Get a second opinion. Ask for an expert opinion. Request your records. She didn’t know she was entitled to hers until Warris told her to ask for them. They ran to 750 pages.

Jessie hopes her story gives others a head start. “I want people to learn the lessons I learned without the diagnosis.”

Resources for navigating care

• Prepare for appointments. Write down your symptoms and questions, bring relevant test results, and consider bringing someone who can help you ask questions and take notes.
• Ask about a second or third expert opinion, especially when facing a serious diagnosis or a major treatment decision.
• Request your medical records. With limited exceptions, HIPAA gives you access to medical and billing records held by covered providers and health plans. Learn about accessing your records.
• Learn how to challenge a denial. Internal appeals and independent external review are routes for disputing coverage decisions; the process and eligibility depend on your plan and the decision. Read HealthCare.gov’s appeals guide. Explore Claimable.
• Ask about palliative care early. It can begin at any stage of a serious illness, including alongside treatment aimed at curing or controlling the disease. Hospice is for the end of life and, for most adults, means stopping curative care. Learn how palliative care differs from hospice.
• Read Jessie’s story. In “The Blanket Stays,” she shares how patients helped her find care and how her own experience is helping others. Read the essay.