The Impact of the Oncology Nurse Navigator on the Lives of Patient and Caregiver

From left: Kay Kroeff Streng and Jill R. May, B.S.N., RN, OCN

Photos by Laurie McVean

I am nominating Jill May B.S.N, RN, OCN, an oncology nurse navigator at the Allina Health Cancer Institute in Minneapolis, for the CURE Extraordinary Healer Award. This nomination is hard to write, though, because it brings back many vivid memories of the three years my husband, Rick, had liver cancer, from his diagnosis in February 2020 until his death on May 1, 2023. However difficult, it is the least I can do to honor and thank Jill, our incredible oncology nurse navigator.

It is impossible to remember or adequately describe all the instances in which she provided Rick with exceptional care and support to both of us throughout his ordeal. I sincerely hope this nomination conveys some measure of the impact Jill had upon our lives.

A biopsy in late February 2020 confirmed Rick had hepatocellular carcinoma (liver cancer). The next step was to determine his treatment plan. Keep in mind that this was also the beginning of the COVID-19 outbreak in the U.S. and a national emergency would be declared on March 13. It was an awful time to say the least.

At Rick’s first oncology appointment on March 6, 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,” the oncology nurse navigator for the team.

We could never know at that moment just how important she would be in our lives over the coming years. I use the words “we/our/us” throughout this nomination because Jill gave her attention to both of us: the caregiver as well as the patient.

Communication was critical, particularly in the beginning when everything came at us so fast. It was easy to become overwhelmed. We had lots of questions, and Jill made it easier for us to ask them. Not long after we began working together, she shared her email address so we could stay in touch. I was stunned. Could she really do that? I will always be grateful that she did. Before getting 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. Giving us an easier way to communicate showed both trust and compassion. It acknowledged we were not just cases or treatment plans, but real people whose lives had been upended. At least now we could carry on without the added stress of waiting for a call back that you did not want to miss. If anyone must go through the experience of a cancer diagnosis and treatment or be the partner of someone who will, I cannot imagine their journey without the support of a nurse navigator like Jill. How would we have coped?

In the first year after diagnosis, there was initial treatment success with interventional radiology and surgery. By the second year, the cancer was under control, and we were chasing the holy grail, a liver transplant. Transplant is considered the only real cure for hepatocellular carcinoma. During this time, Jill coordinated numerous appointments, lab tests, scans and countless other details, in addition to communicating with multiple specialists on our behalf. Complex regulations governing organ donation and transplantation require a liver transplant candidate to stay within a strict set of criteria. The cancer must be contained and the candidate must maintain the physical condition needed to survive the lengthy surgery and recovery.

Rick was within criteria, and in August 2021 we received “the call.” A donor match had been found. We rushed to the hospital but learned shortly after arriving that the donor liver was not sufficiently healthy to be transplanted. Obviously disappointed, we told ourselves that surely another call would come. But we just 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 resumed, but the next three-month scan showed the cancer had returned. Rick was now outside criteria and therefore delisted for a transplant. The next line of treatment, immunotherapy (infusions of Tecentriq [atezolizumab] and Avastin [bevacizumab]) began in January 2022. Immunotherapy came with some difficult side effects, but we could always count on Jill for management strategies and encouragement. She relayed our questions to the doctors, and we usually got answers the same day. If there was something to try to alleviate a side effect therapeutically or palliatively, she would present our options and check in afterward. She always gave us hope when hope was hard to come by. Besides me, she was Rick’s biggest cheerleader.

His scans continued every three months. Immunotherapy infusions had prevented an increase in the size and number of tumors, but by late August 2022, they had begun to grow. We were told immunotherapy had stopped being effective. Another interventional embolization procedure was scheduled, and oral chemotherapy was started in September.

The oral chemotherapy came with worse side effects than the immunotherapy. Again, Jill was who we turned to for help on a weekly, if not daily, basis. Also at this time, the liver team oncologist we had been working with left the practice. It was a blow, and Jill knew we felt like we had been abandoned. She told us, “I’m not going anywhere.” Rick said to me later, “What would I do without Jill?”

In September 2022, Rick had his first occurrence of hepatic encephalopathy (HE). We went to the emergency department (ED) on a Sunday afternoon, and after being there for a number of hours, we were sent home after Rick’s tests proved inconclusive. As the person who was clos­est to him, I still sensed something was very wrong and contacted Jill the next morning to describe what I was seeing. She immediately recognized the symptoms of then contacted the ED triage nurses to brief them so we would have a more streamlined path to admission.

Rick was hospitalized for three days. During that time, I interfaced with the hospital doctors and nursing staff, but Jill and I kept in contact, and she relayed updates to the liver team.

After leaving the hospital, Rick was stable for a time, but about a month later was back in the hospital with HE, this time at Thanksgiving. Because of the long holiday weekend, there was a gastroenterologist available but no hepatologist for on-site evaluation until the follow­ing Monday. Alarmed, I got in touch with Jill, who reached the liver team’s hepatologist, who directed that Rick be transported and admitted to a hospital at the University of Minnesota. This all happened within a few hours. Jill made things happen.

By the end of December, Rick once again met the transplant criteria. Jill called us with the good news that he had been relisted and we were euphoric, but in late January 2023, we were devastated when a scan showed some cancer sites had returned, once again making Rick ineligible for a transplant. The only option now was to have another interventional radioem­bolization, followed by intravenous chemotherapy.

While embolization had been very effective in the past, multiple interventions over the years that killed cancer cells left a lot 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 the procedure, and I supported his decision.

About a week post procedure, symptoms of liver dysfunction grew worse. We were in daily communication with Jill to get the liver team’s input about how to deal with his extreme pruritus, 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. After many years as an oncology nurse navigator and three years of working and alongside us, Jill understood what we needed to now consider.

I do not know how many times over the course of her career Jill has done what I witnessed next. Sitting close to Rick, Jill looked my dear husband in the eyes, took his hands in hers and HE, which I learned is difficult to identify by lab tests alone. She directed us to return to the ED immediately, then contacted the ED triage nurses to brief them so we would have a more streamlined path to admission.

Rick was hospitalized for three days. During that time, I interfaced with the hospital doctors and nursing staff, but Jill and I kept in contact, and she relayed updates to the liver team.

After leaving the hospital, Rick was stable for a time, but about a month later was back in the hospital with HE, this time at Thanksgiving. Because of the long holiday weekend, there was a gastroenterologist available but no hepatologist for on-site evaluation until the follow­ing Monday. Alarmed, I got in touch with Jill, who reached the liver team’s hepatologist, who directed that Rick be transported and admitted to a hospital at the University of Minnesota. This all happened within a few hours. Jill made things happen.

By the end of December, Rick once again met the transplant criteria. Jill called us with the good news that he had been relisted and we were euphoric, but in late January 2023, we were devastated when a scan showed some cancer sites had returned, once again making Rick ineligible for a transplant. The only option now was to have another interventional radioem­bolization, followed by intravenous chemotherapy.

While embolization had been very effective in the past, multiple interventions over the years that killed cancer cells left a lot 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 the procedure, and I supported his decision.

About a week post procedure, symptoms of liver dysfunction grew worse. We were in daily communication with Jill to get the liver team’s input about how to deal with his extreme pruritus, 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. After many years as an oncology nurse navigator and three years of working and alongside us, Jill understood what we needed to now consider.

I do not know how many times over the course of her career Jill has done what I witnessed next. Sitting close to Rick, Jill looked my dear husband in the eyes, took his hands in hers and began to talk to him so very gently about hospice care. She knew that we did not and could not fully accept at that moment that all viable treatment options had run out. She knew when and how to talk about the importance of considering the quality of one’s remaining days rather than prolonging the number of days. It was the most difficult moment up to that point. A close family friend was in the room with us because I needed help getting Rick to the appointment. Our friend witnessed the conversation and was incredibly moved by the compassionate way Jill introduced hospice care to us all. I will never forget it.

It was devastating to accept that this was the end of therapeutic care. I told Jill 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, it seemed to me that end-stage liver disease might not fit into the standard hospice scenario I was told to expect.

I had begun to wonder how much longer I could care for Rick at home when Jill called “just to check in.” I told her about the mounting symptoms I was dealing with, and she gently suggested I consider around-the-clock hospice care at a facility outside our home. She told me about a couple of residential hospice centers she had recommended to patients and their families in the past. I immediately made calls. There was an opening at one she thought highly of, and I arranged a site visit the following day. It was everything she described and more. A huge weight was lifted because I had the peace of mind knowing Rick would receive better care than I could ever offer him at home.

He was to be transported there the day after my visit, but he never had to go; he died within 72 hours of Jill’s call. Even when we went from therapeutic treatment to hospice care, Jill did not stop helping us. Like she promised, she did “not go anywhere.”

I believe with all my heart that Jill May deserves this important recognition. I am incredibly sad about the reason we met but will always be grateful our paths crossed when they did. She made a tremendous difference in our lives. As my husband would say, “I don’t know what I would do without Jill.” He surely was not the first to say this and will not be the last.

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