Kris was a physiology instructor and lecturer at the University of Connecticut for more than 30 years. She enjoyed long walks and the occasional hike, reading, and planning visits with family. Dave, 59, was an engineer who ran his own company, a healthy and fit athlete who rowed 8 miles a day on the Connecticut River. Kris and Dave had been married for 35 years.
Diagnosis
In May 2012, just 1 week before Kris and Dave’s long-awaited trip to Paris, Dave went to the doctor to check on his “annual bronchitis.” Immediately after his x-ray, he was told that he had innumerable nodules all over his lungs. Kris, Dave, and his doctor wondered whether it could be an infection from the river or tuberculosis. Dave went in for a CT scan, and the results showed abnormalities in his lymph nodes. Then, on the day that Kris and Dave were supposed to leave for their trip, Dave was diagnosed with Stage 4 lung cancer.
Kris was in complete shock. “I felt like I was confused and bewildered, even hallucinatory, like it was all a bad dream, unreal, a mistake.” It also didn’t seem fair. But Kris was helped largely by Dave’s attitude. He was always very analytical; he controlled his emotions and moved on. When she expressed how unfair she thought it was that this was their reality, he pointed out the good fortune that they also had.
Family was very important to both Dave and Kris, and they involved their adult children right away. When they first told their kids about the diagnosis, Dave and Kris made sure their kids were surrounded by a support system; Dave and Kris knew it was going to be hard on them. Then, together, they all focused on the next steps for treatment.
Treatment and Side Effects
There was only one approved treatment option for Dave: a first-generation tyrosine kinase inhibitor. This treatment, however, caused side effects, like rashes that made it painful and difficult for Dave to walk. He also often lost his appetite.
When that treatment failed, Kris, Dave, and his doctor agreed that Dave would participate in a clinical trial of an immune checkpoint inhibitor. However, before Dave started that trial, his doctor shared that there was evidence that the trial drug was not effective in EGFR mutation-positive lung cancer, the type Dave had. He instead went to another NCI-designated cancer center, where he qualified to participate in a clinical trial for a different drug. In that Phase 2 trial, the researchers had already determined that the drug was safe; they were focusing on whether the treatment worked and on the possible toxicities. The drug helped Dave for a while, but it also caused side effects, like cataracts and hyperglycemia. The hyperglycemia went away as soon as Dave stopped taking the drug, though Kris had to work with their insurance company for years to explain that Dave did not have diabetes.
In 2014, approximately 6 months into the trial, a scan showed significant progression, including metastases to the brain. Dave had previously been treated for brain metastases, but now there were many more. He was given the option to undergo whole-brain radiation to treat the spots, but he was concerned about the effects on his brain function. Instead, he joined a clinical trial of a new drug that targeted the same receptor as a previous drug he had tried. Thankfully, this clinical trial brought substantial improvement, clearing the metastases in his brain. It was through his and other cancer survivors’ participation in the trial that investigators established that this drug crossed the blood-brain barrier. Later, this clinical trial drug became the first-line treatment for lung cancer.
Dave underwent 8 different regimens during his 7 years of treatment. He benefited greatly from targeted therapies. For most of the 7 years after his lung cancer diagnosis, he continued to live a “normal” life. People couldn’t tell he was sick, and he didn’t need additional physical care from a loved one. Kris, therefore, prefers to use the term “care partner” instead of “caregiver.” She didn't need to provide the more physical and medical caretaking that many caregivers take on to help their loved one. It wasn’t until June 2019, when Dave ran out of treatment options, that Kris did most of the caretaking. Dave underwent whole brain radiation but passed away about 2 months later.
Support
Dave’s diagnosis was very hard on Kris and the family. He was active and healthy and did not have a history of lung cancer risk factors. Their family was angry and afraid. “You know, my line I’ve used... is that we have cancer too,” Kris said. Kris experienced panic attacks and always felt “scanxiety” when they awaited results to determine whether the treatments were working. Eventually, Kris saw a therapist to help with her anger and anxiety.
Although Dave’s cancer was difficult to face, their family grew stronger and learned to live in the moment. Kris, Dave, and their children and grandchildren would participate in fun activities, like going out to dinner, seeing movies, or playing together. It was new for Kris to enjoy her time and to experience the feeling of being in the moment, even without knowing what the results of that day’s scan might reveal.
In 2013, one year after his diagnosis, Kris and Dave took their trip to Paris. They had a wonderful time, and Kris learned to “elevate her gratitude” and that she could handle much more than she thought. Before he passed away, Dave had always taken care of the finances and everything related to their house in Cape Cod; he built the furniture and most of the home. Now, Kris handles most of it.
During Dave’s cancer journey, Kris and Dave had support from not only their family but also their friends and colleagues. Their friends came over, fed them, took them out to dinner once a week, and made sure Dave went rowing often. Kris’ colleagues at the University of Connecticut offered to teach for her anytime, which allowed her to be with Dave for all his medical appointments.
Additionally, Kris sought help and comfort by reading scientific journals and speaking to doctors and other health care professionals about science. It helped her understand what was happening. The lung cancer community also was an incredibly helpful resource for her, especially back in 2012, when Dave was first diagnosed and it was extremely difficult to find reliable information on lung cancer. She notes that there are many resources available today that she and Dave didn’t have.
When Dave passed away, she found herself seeking a community again. She joined an online group that felt like a lifeline for her, and that connection helped to carry her through the COVID-19 pandemic.
Advocacy and Advice
Kris now advocates for cancer caregivers, care partners, and cancer survivors by raising awareness about lung cancer. She is involved with several organizations, including the LUNGevity Foundation and the Lung Cancer Research Foundation. She helps review grant applications for both organizations, as well as for the cancer center where Dave received most of his care. Additionally, Kris is the secretary of the board of the White Ribbon Project and, most recently, a member of the National Lung Cancer Roundtable Survivorship Task Group.
“I try to help . . . including raising awareness that anybody can get lung cancer. The White Ribbon Project is a way to try to do that, to use these ribbons to promote awareness, and to make people realize that there is a big, big community here for them.”
Kris believes that there needs to be more awareness around cancer screening and palliative care. She notes that if lung cancer is caught early, it could be curable. She believes that more research is needed on palliative care throughout the cancer journey and that improved palliative care could help people survive with the disease and live well with it, not just help near the end of life.
“Another message I try to share with people is that chemotherapy is not the end of your life. It’s not the end of your good life either. It can be quite tolerable, depending what it is.”
Kris also strongly advocates for cancer survivors to participate in clinical trials. “It’s my wish,” she says, “that everybody will know to ask the right questions and to see if they are candidates for a trial.” She notes that it’s a balance between giving cancer survivors hope and conducting science, but Kris wants to reassure people that cancer survivors generally do not receive the placebo. “You get either the new treatment or the gold standard treatment... So, don’t be afraid to try the trial.”
In addition, Kris would like cancer survivors, caregivers, and anyone who is affected by cancer to know that there is hope. “There’s always hope. I find it in the science and the generosity of the people who do the science and do the treatment. These doctors who give their time to talk to patients and meetings—it takes people who are dedicated to do these things. And what I hope is that patients, especially when you first get hit with this awful diagnosis, can find out about what’s out there.”
Kris also feels strongly that caregivers need more support and recognition. The closer the caregivers are to the cancer survivor, the more it affects them.
Words to Dave
“I would like to say thank you to my husband, because he’s always on my mind,” shares Kris. “I think of him when I choose what I do and what he would have wanted. I try to channel him—sometimes with success, sometimes not—because of his heart and his magic that he performed with his grandchildren and people around him.”
Image: Kris
It’s my wish that everybody will know to ask the right questions and to see if they are candidates for a [clinical] trial… You get either the new treatment or the gold standard treatment... So, don’t be afraid to try the trial.”