This essay describes my journey with non-Hodgkin lymphoma — peripheral T-cell, not otherwise specified — and my most extraordinary nurse, Xuan Arnette, RN, OCN.
This essay describes my journey with non-Hodgkin lymphoma (NHL) — peripheral T-cell (PTCL), not otherwise specified — and my most extraordinary nurse, Xuan Arnette, RN, OCN.
I was a healthy, 69-year-old nurse practitioner working 40-plus hours a week in a pain clinic and taking 50-mile bike rides on the weekends for fun. I had an arthritic knee and left shoulder, but they didn’t slow me much. I did have to quit triathlons after a medial joint replacement to my right knee due to a meniscus tear I didn’t stop to have repaired in time. Hey, I was running six-minute miles and didn’t want to lose the training time. Little did I know what was around the corner.
In December of 2015, I noticed a lump in my right groin, and at a surgical appointment in January 2016, it was removed and sent to the lab. I got an immediate call to see an oncologist and was given the results and diagnosis. My wife, Nancy, and I went together to the appointment and were stunned speechless. It takes a lot to shock a pair of former ICU nurses, but this time — being on the other side of the desk – we absolutely couldn’t think. We were given the dismal statistics on NHL/PTCL and I was scheduled for a PET scan, port and CHOP chemotherapy. When something is dire, people say it’s “as serious as a heart attack,” but the saying could easily be “as serious as cancer.” Nothing can prepare you for that diagnosis. Our lives had gone from fairly normal, happy and planned to chaos.
The oncologist told me that bone marrow and stem cell transplants were perhaps my best option if chemo failed, but I’d have to travel to Denver or Phoenix, because Albuquerque didn’t offer them. I had treated patients in the ICU who had graft-versus-host disease and I wanted no part of transplants, although I did not know anything about autologous procedures. I was scared to have the port placed, because the patients I saw with ports usually did poorly. I came to terms with mine, though — EMLA (painkilling cream) is wonderful!
I tolerated CHOP fairly well, with the usual hair loss, fatigue and — strangely enough – hiccups! The PET was repeated and showed that I was in remission.
We had done some research and, due to the very real possibility I would die from the cancer or the treatment, decided to move closer to family for Nancy and also to find a transplant center for an autologous stem cell transplant. Our son lives in Virginia Beach, Virginia, and the transplant center is in Richmond. We agonized over leaving our new home in Albuquerque and the job I enjoyed, but just didn’t see an alternative. We moved to the east coast and I started seeing Dr. Craig Franzman in Chesapeake, Virginia. He is a great oncologist with a personable style — unlike some of the others I had seen in the past — and I continue to see him for surveillance.
We rented a home in Moyock, North Carolina, just south of the Virginia line, and got an appointment for the stem cell transplant at Virginia Commonwealth University in Richmond. We had to stay at a halfway house near the hospital for the work-up and initial procedures. All was going well, and I had the stem cells harvested in October 2016. Unfortunately, I noticed a lump in my left groin, and the biopsy came back positive for NHL — specifically, anaplastic large cell lymphoma (ALCL) that expressed the protein CD30. The transplant was put on hold. I was started on Adcetris (brentuximab vedotin, a targeted drug that inhibits the activity of CD30), and after three infusions was again in remission and ready for the transplant.
While at the halfway house, I learned from a patient that Virginia Oncology in Norfolk performed autologous stem cell transplants, and we discussed an appointment with them when we saw our primary oncologist on return from Richmond. We were referred to Dr. Dean S. McGaughey at Virginia Oncology and, after more testing and conferencing, were accepted into his program. I would stay in a Residence Inn near the clinic and the transplant would be done on an outpatient basis.
We met Xuan — pronounced “Swan” – at the clinic and she explained the process to us, gave us a tour of the facility and had us watch a video in one of the private rooms.
We were a little overwhelmed by all that had happened and by the long road yet ahead, and she was just right for us. She showed she cared and understood where we were coming from, but wasn’t mushy and didn’t ever give the impression that what we were doing was going to be easy, but that it was possible. The truth, blended with a dose of compassion, was what we needed all along, and she gave us both in liter bags!
She understood how I, as a critical care nurse and nurse practitioner, was feeling about the things that were being done to me and the lack of control I was experiencing. I had the PICC (cathether) placed and thought I was ready to get going. I knew I wasn’t going to need any transfusions or platelets or antibiotics, and told Xuan so. She just smiled and said, “We’ll see.”
As the high-dose chemotherapy regimen that precedes transplant progressed and I had to spend most of the day in the clinic, and then take an overnight infusion pump to my room, I started to get anxious, but I was still OK. The day my stem cells — brought by courier from Virginia Commonwealth University — were infused, I thought the worst was over and I’d be heading home in a few days. Again, Xuan wassupportive and caring, but let me know that it just might take a little longer. It was good to hear the truth from a peer, and to be treated like one. I kept bugging Xuan about the overnight infusion pump and said that I was going to turn it off and disconnect it so I could get some sleep, and she again let me vent for a while and smiled. I knew I wasn’t going to win, but it felt good to harass her a little!
This team of nurses, with Xuan primary for me, took me through an e-coli sepsis, multiple platelet and red blood cell transfusions and post-discharge pulmonary aspergillosis. Xuan was always there for us, never allowed me to quit and kept my spirits up after a hard night with a 102-degree fever and chills. I could not have asked for better care.
But she never did let me disconnect that danged overnight pump!
She showed she cared and understood where we were coming from, but wasn’t mushy and didn’t ever give the impression that what we were doing was going to be easy, but that it was possible. The truth, blended with a dose of compassion, was what we needed all along, and she gave us both in liter bags!
Written by Jerry Bridges, M.S.N., RN, CNP, retired from New Mexico Pain and Spine Clinic, Albequerque, New Mexico