This Oncology Nurse Stayed by Her Patient's Side Until His Very Last Days

I nominate Jill May, oncology nurse navigator at the Allina Health Cancer Institute in Minneapolis, Minnesota, for the CURE Extraordinary Healer Award. May has practiced in oncology since 1989 and has been a certified oncology nurse since 1994.

This nomination is written in sadness, because it brings back many memories of the three years my husband Rick lived with liver cancer — from diagnosis in February 2020 until his death. It is also written in gratitude for May, our exceptional, extraordinary oncology nurse navigator. I am forever grateful for times too numerous to recall when she provided expert care and comfort to my husband and moral support to us both.

In early February 2020, an MRI found a mass in Rick's liver, and a week later a biopsy confirmed hepatocellular carcinoma. At this same time, the first case of COVID-19 in the United States was documented and a nationwide emergency was declared on March 13. It was an awful time, to say the least. At Rick's first oncology appointment in early March, we learned his treatment plan would be led by a hepatologist and a liver team. We were told, "You'll be getting a call Monday morning from Jill May." May, the doctor explained, was the oncology nurse navigator for the liver team. A fire hose of information was coming at us. We felt overwhelmed and alone with a dire diagnosis in a world being turned upside down by COVID-19. At that moment, we had no idea just how important our nurse navigator would be in the years to come.

I use the words "we/our/us" because May gave her attention to two people: the patient and the caregiver. Communication was essential, especially in the early going when everything came at us so fast. We had lots of questions. May welcomed them and made it easier to ask and receive information. Shortly after we began working together, she gave us her work email. I was stunned. Could she really do that? Could I really use it? Before being assigned to the liver team, we would call a general oncology office number, get routed to one or more intermediaries, leave a recorded message and eventually get a return call — never the same day. Sharing her email with us demonstrated trust and compassion. It acknowledged we were not just another case or treatment plan but real people whose lives had been upended. Now, at least, we could go about our days without the added stress of waiting and missing an important call back. Being given permission to text or email sounds trivial, but it was not.

In the first year after diagnosis, interventional radiology treatments and surgery yielded great success despite the COVID-19 protocols that considerably slowed the scheduling of appointments and procedures. In this time, May coordinated numerous appointments, lab tests, scans and countless other details. She communicated with multiple specialists on our behalf, relaying our questions and providing answers as soon as she had them.

By the second year, with the cancer under control, we were chasing the holy grail — a liver transplant. Transplant is considered the only real cure for hepatocellular carcinoma. Complex regulations governing organ donation and transplantation require a liver transplant candidate to be and stay within a narrow set of criteria to qualify. The cancer must be contained and the candidate in good enough physical condition to survive the lengthy surgery and recovery. Rick was within criteria in the summer of 2021 and in August received the call — a donor match had been found. We rushed to the hospital but learned shortly after surgery prep that the donor liver was not sufficiently healthy to be transplanted. Disappointed, we told ourselves that if it happened once, surely another call would come. We did not realize how close we had come and how very rare it is for all the transplant stars to align in your favor.

The wait for transplant resumed, but Rick's next three-month scan showed the cancer had returned. He was now outside criteria and off the transplant list. The next line of treatment, immunotherapy — infusions of atezolizumab and bevacizumab — began in January 2022. Immunotherapy came with a variety of difficult side effects, but with each one we could always count on May for management strategies and encouragement. Our questions for the doctors were relayed and we usually got answers the same day. If there was something to try to mitigate a side effect, she would give options, check progress and provide alternatives. She always gave us hope when hope was hard to come by. After me, she was Rick's biggest cheerleader.

Liver scans continued every three months. Immunotherapy infusions prevented the increase in size and number of tumors, but by late August 2022 they had begun to recur and grow. We were told the immunotherapy had stopped being effective. Another interventional embolization procedure was scheduled and oral chemotherapy started in September. The oral chemotherapy came with more and even worse side effects than those associated with immunotherapy. We turned to May for help on a weekly if not daily basis. Then, unexpectedly, the liver team oncologist we had been working with left the practice. It was a huge blow, and May knew we felt like we had been abandoned. She told us, "I'm not going anywhere." Later that day Rick said to me, "What would I do without Jill?" I felt the same.

In September 2022, Rick had his first episode of hepatic encephalopathy. We went to the emergency department on a Sunday afternoon but were sent home when tests proved inconclusive. Given my observations, I still sensed something was very wrong and contacted May the next morning. Over the phone I described what I was seeing. She immediately recognized the symptoms, which she told me are difficult to identify by lab tests alone. She directed us to return to the emergency department immediately and contacted the triage nurses to brief them so we would have a more streamlined path to admission. Rick was hospitalized for three days.

About a month later, Rick returned to the hospital with hepatic encephalopathy symptoms, this time at Thanksgiving. Because of the long holiday weekend, there was a gastroenterologist but no hepatologist on site until the following Monday. Alarmed, I got in touch with May. She contacted the liver team hepatologist, who directed that Rick be transported and admitted to the University of Minnesota hospital. It seemed like a lifetime, but this all happened within a few hours. May made things happen.

By the end of December, Rick once again met transplant criteria. May called us with what she described as the "best Christmas present ever" — Rick had been relisted. The three of us were euphoric. But in late January 2024, we were devastated when a scan showed cancer sites had returned once again, taking Rick out of transplant criteria. The only option now was another interventional radioembolization treatment followed by IV chemotherapy. While embolization had been very effective in the past, multiple interventions over the years had left a great deal of scar tissue behind. The cumulative effect was liver damage. We were told his liver could fail suddenly from one more embolization, but Rick wanted to do the procedure and I supported his decision.

About a week after the embolization, symptoms of liver dysfunction grew worse. We were in daily communication with May to get the team's input for dealing with his extreme itching, edema, loss of appetite and overall weakness. At his second clinical visit after the procedure, his liver function labs were not good enough to get the oncologist's approval for a second chemotherapy infusion. We were desperate and had tunnel vision. We could only think about what to try next.

Then came a moment I will never forget. Sitting close to him, May looked my dear husband in the eyes, took his hands in hers and began to talk to him gently about hospice care. She knew that we could not fully accept at that moment that all viable treatment options had run out. She talked about the importance of the quality of days over numbers of days. A close family friend accompanying us was incredibly moved by the compassionate way May introduced hospice care to us all. It was devastating to accept that this was the end of therapeutic care. I told May the thought of not being able to consult her in the days to come was terrifying. She said, "I'm not going anywhere."

Within a week we were assigned to a hospice care team. Approximately three weeks later, May called — just to check in. I told her about mounting symptoms, and she gently suggested I consider around-the-clock hospice care at a facility outside our home. She told me about residential hospice centers she was personally familiar with and had recommended to patients and their families in the past. I immediately made calls. There was an opening at the one she thought most highly of, and I arranged a site visit for the next day. It was everything May described and more. A huge weight was lifted; I had peace of mind knowing Rick would receive exceptional care. He was to be transported there the next day. Rick never left home. He died within 72 hours of May's check-in call.

Even though Rick's care had transitioned from therapeutic to hospice, May never stopped helping us. Like she promised, she did not go anywhere.

Jill May is truly deserving of this recognition. She embodies extraordinary healing, care and humanity — not just for what she did for my husband, but for all the others unfortunate enough to need her expertise and fortunate enough to come under her care. She made a tremendous difference in our lives. As my husband would say, "I don't know what I would do without Jill." He was not the first to say this, and he will not be the last.

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