By Maeghan E. Arnold
Summer, 2013
Pure bliss. I was 26 years old, enjoying the summer off from graduate school and life as a newlywed. I married my soulmate that May in an intimate gathering of friends and family. My three-year-old daughter was delighted with my choice in a life partner; she named him “Big Daddy” due to his height compared to her biological father.
After our honeymoon, we returned to our jobs. I was working as an RN in an outpatient hematology/oncology practice and teaching in an LPN program, and my husband worked across the street from the clinic as a hospitalist physician. We celebrated our daughter’s fourth birthday in July and adopted our first family pet in August — Libby, a rescue dog. A wonderful addition to our family, Libby had soulful eyes and a patient, pleasant demeanor. It was a busy, beautiful life.
Fall and Winter, 2013
I started the fall semester of graduate school days after we brought Libby home. I had developed left axillary discomfort but attributed it to carrying my daughter or perhaps picking Libby up. One evening, in the shower, I felt a searing pain in my axilla while drying off. I palpated a cord-like structure and in a surge of nurse stubbornness, was determined to find its origination point.
As I probed along the cord, I felt a rubbery, mobile lump near the left upper outer quadrant of my breast. It felt like a lymph node, so I thought little of it. The next day, I went to my annual gynecological exam and mentioned it to the nurse practitioner. She too thought it was likely a lymph node but ordered an ultrasound to set my mind at ease.
I went the following day for the ultrasound. I watched the screen as the ultrasound probe glided down my left arm toward my breast, and then — I saw it. An image resembling a comet with two tails. Instinctively, I knew. The ultrasound technician quietly excused herself, and I sat up and began texting my oncology nurse coworkers. “Pretty sure I have cancer,” I texted. Incredulous, several texted back. “It’s probably nothing!” The rest of the day still felt like a dream.
The ultrasound technician came back and said the ultrasound had shown “something,” and the radiologist had ordered a mammogram. Still in my gown from the ultrasound, somewhat slimy from where the ultrasound gel, I walked down the cold hallway to the mammogram room. After moves that would likely impress a contortionist, they finally were able to get the portion of my breast-meets-armpit in the optimal spot for imaging.
I saw a video game-like creature on the screen after I asked to view the image that had been captured. The mammogram technician said nothing. I was again taken down a cold hallway, and the radiologist himself appeared. We mutually recognized one another from the hospital where I had previously worked. We exchanged pleasantries, but I knew what was coming next. “We found something on the ultrasound and mammogram and would like to perform a biopsy.” I quietly replied, “I thought you might.”
We discussed scheduling. My second live class of the semester was the next day, Advanced Health Assessment and Diagnostic Reasoning. I explained that we had been told that we could only miss if we were extremely ill or dying, so if there was any way to get the scheduling done today, that would be ideal. He scheduled me for later the same afternoon.
Feeling numb, I left, but at the same time oddly at peace. When I arrived home, I found my husband of three months weeping in our home office. I rushed to comfort him. The same radiologist had called him to tell him that there was a high suspicion of malignancy. I remember saying as I hugged him, “Don’t worry. Everything will be ok. It’s all going to work out.” But I didn’t know that for sure.
We went to a fast-food restaurant for lunch, but I hardly touched my food. My husband went with me for the biopsy, and the radiologist who performed the procedure was a former classmate of his in medical school. They exchanged awkward pleasantries while I was lying on an exam table, preparing to have my biopsy performed. My husband was escorted to the waiting room. Before we left, the radiologist told us that it was highly probable the cells were malignant, but they would call the next day to confirm.
I called the oncologist with whom I worked with to let him know. He ordered scans for the next day, “just in case.” He told me, “We can always cancel them if the results are negative.”
The next day, I walked into Advanced Health Assessment and told my instructor matter-of-factly, “Well I’m pretty sure I have cancer, but they’re going to call me around lunch to confirm. If I have it, I’ll need to withdraw I guess.” Stunned, she nodded. Distracted, I took my quiz and listened to the lecture.
Like clock work, the office called just before lunch, confirming what I already knew — I had cancer. I left class, called my husband, and met him at the hospital for my scans. I called my parents, my beloved grandparents, my father-in-law. Strangely, I did not cry. While in the scanner as it scanned my chest, abdomen, and pelvis, I began to pray. I thought about my preschool daughter, my new husband, my family, and friends. I wanted to LIVE.
My parents, who divorced when I was 18 and had not been in the same room for any substantive time in eight years, met me at the oncologist’s office and embraced one another. My eyes watered, but not because I had cancer. Perhaps this would be a turning point? Time would tell. The treatment plan was established that day — I would be completing neoadjuvant chemotherapy, which meant I would complete chemotherapy before surgery.
The next couple of weeks whizzed by, first with meeting my new breast surgeon, who also placed my infusaport the next week. My first surgical procedure. I had never had anything other than strep throat before this — not even a cavity or a broken bone! I explained to my four-year-old in the only way I knew how. “Mommy is going to be taking some special medicine through this special button.” After I arrived home from the procedure, she asked to see it and asked if it hurt. It did. I lied. “No! This is going to help Mommy get better!” Smiling, she went to play with her toys.
Next, I completed my staging scans with a brain MRI. My oncologist called the same day. “You also have a brain tumor,” he said, “but it’s not related to your breast cancer. The way your brain has accommodated it, it has probably been there since you were a child. We will keep an eye on it with routine imaging. It is most likely an oligodendroglioma.” “Great,” I thought. The MRI had been the most annoying thing to date, with all the loud sounds. I met with a neurosurgeon at a private hospital, who agreed with routine imaging to follow the tumor.
A friend from high school had a side job as a photographer. She came over, and we did a photo shoot before I had to cut my long hair that fell nearly to my last rib. I had it cut into a bob and I felt spunky, even though I knew I would soon lose my hair completely. I returned to the classroom and told my students about my recent diagnosis. They were wonderful, and had t-shirts made. We made plans to walk in Race for the Cure in October.
Two weeks after my diagnosis, I started chemotherapy on Wednesday, September 11, 2013. Several of friends came, brought presents, and my husband was there, in addition to my friends who were working in the chemo room. It felt like a party, although I couldn’t wrap my head around why we would celebrate this. We went to a casual restaurant right after my treatment. Bad idea. The chemotherapy hit me while I was sitting at the table. I got up and ran to the bathroom. Fortunately, nothing happened but I didn’t eat after I returned to the table. Just to be safe.
One of the chemotherapy medications was notorious for causing myelosuppression, so I was given an injectable medication to stimulate my bone marrow. It came to the house packed in dry ice. “Fancy,” I thought. I would take it every other week for four weeks. I stood in the bathroom and injected myself in the abdomen. Later that night, I cried — not because I was sad, but because I felt as though my bones were going to shatter. It hurt to be touched, so my husband could not even hold me to comfort me. The pain was unabated by the Tylenol and ibuprofen I had taken. Finally, I fell asleep, exhausted. I awoke next day, surprised that I felt somewhat normal after the grueling night of pain.
The 17 cycles of chemotherapy that I received became routine. After the first four cycles, I went weekly, every Wednesday. Things seemed to be going well, and I was tolerating the treatment with minor side effects. I continued to work at the clinic and the school, with minor adjustments in my duties while I was immunocompromised. I did not provide any direct patient care at the clinic, and I no longer went with my students to clinical. I walked the entire 2K of Race for the Cure and pushed a wheelchair, but never sat in it. I felt proud of myself — I was among the thousands of women who had earned the title “survivor.”
Interestingly, I had become a sort of local celebrity during my months of treatment. I was interviewed by a local news station alongside a former patient of mine. It seemed novel that an oncology nurse could be diagnosed with cancer. Friends hosted fundraisers and raffles to help cover treatment expenses and upcoming surgery. I was featured in a commercial advertising the oncology clinic, my bald head glowing. I rang the chemo bell, signaling the end of traditional chemotherapy in mid-December. I would still receive targeted therapy for the next year.
2014
The commercial aired for the first time during the 2014 Winter Olympics in February. I received several calls that night, with excited voices on the other line saying, “I saw you on TV! I saw you!” It was a strange feeling. I felt flattered to have so much attention but puzzled and a little embarrassed regarding “why.”
February commenced the “year of surgeries.” I had seven surgeries that year — a skin sparing double mastectomy with immediate placement of tissue expanders, a total hysterectomy including both ovaries and cervix, three eye surgeries (one of the chemotherapy drugs had clogged all of my tear ducts), a tissue expander exchange for implants, and another breast reconstruction revision surgery. With each surgery, I would whisper a prayer that I would wake up from surgery to see another day. After all, that was a lot of anesthesia. My husband and dad did find me pretty humorous when they would visit me in pre-op, though. Midazolam (Versed) made me an instant comedian. Libby was a wonderful companion for me during my recoveries. Between surgeries, we would travel, eat, laugh, and love. Life is in the in-between.
That summer, the celebrity status picked up again for a brief season. I was asked to speak at a cancer fundraising event, and there were lots of promotional activities. I was interviewed by the paper and was featured on TV twice to advertise the event.
I started back to school that fall. It felt surreal walking into the same classroom in fall 2014 where I had told my instructor that I likely had cancer. It had only been a year, but I was a completely different person when I returned. I passed Advanced Health Assessment, ready to move into my specialty course work to complete my master’s degree. I spoke at the fundraising event in December, wearing a black gown with embellished sleeves, thankful to be alive and given the opportunity to tell my story. Everything was falling into place.
2015
By early January, the celebrity status had fallen off again. I entered my last year of my graduate program with fresh determination to learn everything I could to improve care for my patients. I still went for routine scans, both for my breast cancer and my brain tumor. I traveled to Guatemala for a week that summer on a medical mission trip, grateful to be able to give back.
Finishing my final summer semester of graduate school, I received a call from my neurosurgeon’s office. “The tumor has started to change,” he said. I remember feeling a pit in my stomach, afraid of what he would say next. I remember asking if he thought I had time to finish my degree in December, or if it would kill me first. He said it wouldn’t, but that we needed to schedule the surgery. I scheduled it for the Monday after I would submit my last assignments.
I completed my final presentation on Wednesday, December 2, 2015. Finally, I had completed my master’s degree! My husband and I took our daughter to Walt Disney World the next day. We did our best to celebrate the season with Mickey’s Very Merry Christmas Party, knowing that surgery was looming, but not knowing what would happen next. I had shaved my head again in preparation for the surgery, but I had been wearing wigs since my return to graduate school, so no one noticed the change in hairstyle. We flew back on Sunday afternoon, and by 5 a.m. on Monday, I was in pre-op, waiting for brain surgery. I was incredibly nervous. Brain surgery seemed so much scarier than the other seven I had in 2014. I said another prayer.
I woke up in the surgical ICU, relieved that I had survived my scariest surgery to date. I had a quick recovery with no deficits. The pathology confirmed what had been seen on imaging, a slow-growing oligodendroglioma. Any neurosurgery provider would be disappointed in me to read this, but I drove within a week as my grandmother needed to go for an urgent appointment and had no one else to take her. I took my Keppra as prescribed, and stopped when I was told I could. I was not recommended any further treatment, and life went on.
2016 – 2018
The next couple of years were fairly uneventful. I worked hard and played hard, as much as my roles in academia and clinical practice would allow. We traveled as often as we could. I enrolled in a doctoral program in the fall of 2017. My daughter continued to grow up before my eyes into a smart, funny, sassy, beautiful girl. I went to all the field trips I could, as I knew that those years would go by quickly, and they did. We adopted a second family pet — another rescue dog named Brodie. Looking back, I didn’t fully appreciate all those experiences. It’s easy to take little moments for granted, but life is in the in-between.
In the fall of 2018, one of my routine imaging scans showed new activity in the surgical cavity in my brain. The oligodendroglioma had grown back, or rather, it had become apparent on that scan that it was never fully resected. I went for a second opinion out of state and was told that I would likely die of something else before I died from the brain tumor. While there, I met with a neurooncologist who offered me chemotherapy and radiation. I declined, as I had just been told that I would die of something else before I died of the brain tumor. Why would I want to sign up for that again? No one, not even the neurosurgeon or neurooncologist, told me that it was actually cancer, and not just a tumor. I had been told that even if it ever needed to be removed, I would not need systemic treatment. So, I went back home, and life continued.
Spring 2019 – Winter 2021
Before I went for the second opinion, I had talked to my advisor in my doctoral program about the possibility of needing surgery, pending the results of my visit. She recommended that I take only one class. I agreed, but that meant that my next opportunity to resume coursework would be in 2020 as they only offered courses once per year. I was scheduled to graduate in December 2019, but I was ok with delaying a year. The remainder of 2019 was uneventful; we enjoyed the extra time I had as I was not taking any courses in summer or fall. Life is in the in-between, remember?
When I e-mailed my advisor in late 2019, I received an automatic reply that said, “Please contact (name of other faculty) as your new advisor. I am no longer with the university.” I learned that in my absence from the program, most of the faculty had left to pursue full-time clinical practice. My project that I had been working toward was no longer going to be permissible as the rules had changed during my sabbatical. I was going to have to restart the clock on my entire project, and there was not a clear answer from the new advisor on when I would be finished. I transferred to UAMS to complete my degree, as I was able to receive a definitive answer on a graduation date but lost several credits because of the transfer. It was worth it, though. I could see the light at the end of the tunnel. I enrolled in classes in spring 2020, and I would have my doctorate in May 2021.
Cue COVID-19. Life, as everyone knows, and perhaps shudder to remember, became very different, seemingly overnight. I continued to take online classes and pivoted to online instruction for my students. We developed decontamination protocols for when my husband would come home from the hospital to prevent our daughter from catching a virus that was poorly understood. I grocery shopped with a mask and gloves during off-hours. It was a drastic change of pace from what we had grown accustomed to in previous years. Our travels came to a screeching halt. Everything slowed down, in a sense. But there were some beautiful moments as well. I learned that I enjoy bird watching. I learned to cook several foods from scratch. I learned that a slower pace is not the worst thing in the world. Remember, life is in the in- between.
In early 2021, my grandmother began declining significantly. She had been on dialysis for a year at that point. My Nana was my best friend, in every sense of the imagination. She was my encourager, my confidant, my road trip companion, my babysitter. She died in March, and I felt the world collapsing beneath me. I had to forge ahead because of work responsibilities and all the remaining tasks before graduation in May.
May — it was finally time to graduate! I longed for my Nana to see me graduate; she may have, just on a different plane of existence. My husband did the honors of hooding me at home during my Zoom commencement ceremony. Some of my family members were at our home to celebrate. It was a bittersweet day; I was thrilled to be finished, but I was also missing one of the most important people in my life to celebrate with me.
Late summer, I began acting in ways that were out of character for me. I initially attributed my mood to be grief. In hindsight, my husband and I should have known something was wrong. One day in early fall 2021, my boss called me after a series of incidents that were very unusual given my past behavior and performance. She asked when my most recent scan had been. I realized it had been two and a half years prior; I had fallen behind on routine scans during COVID.
I went for my scan in early October, not expecting anything drastically different, given the previous slow rate of growth. When I received the report, I immediately called my best friend. She was living in Houston and was, coincidentally, married to a neurosurgeon. He asked me to send my images. He informed me that I needed to be seen, sooner rather than later. He was instrumental in getting me to MD Anderson Cancer Center, a place that I have grown to love. I was told that I did in fact have brain cancer. Similar to my breast cancer experience, things moved so quickly that it was a blur. I was put through a battery of tests, moved from clinic to clinic for evaluation. They left no stone unturned in my preoperative workup. It was a well-oiled machine.
Due to the tumor’s size and location, I was told that there was a possibility that I would be unable to speak or move, at least temporarily. I was terrified, and I felt terrible that my husband was going to have to be in alone in the waiting room, as COVID was still going strong at that point. We were far away from home, far away from our primary support system.
I underwent an eight-hour surgery for gross total resection on November 11, 2021, the day after his birthday. We went to dinner on his birthday with my best friend and her husband, celebrating him, but not knowing what was next for me. I tried my best to stay positive. There was a question of whether I would need to be awake for the surgery. Thankfully, I was under general anesthesia the entire time, as the surgeon determined that it might cause too much swelling if I was awakened during the surgery.
I awoke in ICU and was reportedly combative at first, coming out of anesthesia. I was having difficulty with word finding, but being proficient in sign language, I was frantically signing to my husband who did not understand anything I was saying. He got mom on FaceTime; she was able to decipher what I was trying to say. A couple of hours later, I was talking but still having some word-finding difficulties. Miraculously, I was able to move all of my extremities and follow commands. After a couple of days, I moved to the floor for my continued recovery. I was able to walk to the bathroom with standby assistance. I was discharged home after four days of hospitalization and felt pretty good!
Things were going better than planned. I returned to MD Anderson a few weeks later to receive the treatment plan from the neurooncologist. I also met with the radiation oncologist, who discussed the pros and cons of proton therapy versus photon therapy (traditional radiation). As we did not have a proton center in Little Rock at that time, and the recommended course was six and a half weeks, I opted for traditional radiation therapy at my local cancer center. I started radiation two days after Christmas.
2022
I sailed through radiation with no side effects. I started chemotherapy the following week after I completed radiation. I tolerated the chemotherapy fairly well in terms of energy and quality of life. However, my liver function tests had started to rise, and my blood counts fell. In the end, I was only able to complete three of the six recommended cycles of chemotherapy, which the neurooncologist told me was the average number of cycles that most patients could tolerate. I continued to work throughout the course of my treatment, and all things considered, I had done remarkably well. I even published a manuscript during my treatment, using my precious Nana in the case study portion. I returned to working on campus in late fall of 2022, gained a new colleague in my specialty, and my scans were clear. Life was good, and I was incredibly thankful.
2023 – Present Day
In 2023, we made up for lost time with travel. We went somewhere nearly every month, sometimes two trips! I received two grants, implemented a new teaching style with my new colleague, and presented the findings at several conferences. I published another manuscript and started working on a third. I returned to clinical practice. I took my daughter to figure skating classes. I ate, drank, laughed, and loved. I LIVED and continue to do so; there is still so much I want to accomplish, see, and do. I try to be more cognizant these days of the little things and more intentional to savor them. I’ve lived to see my daughter blossom into a lovely, intelligent, good human. I celebrated my ten-year wedding anniversary with the love of my life in May, complete with a string quartet concert and reception. My latest scan in January 2024 was still clear. I’ve been told that the gross total resection, radiation and chemotherapy may have reset the clock for approximately 10 years. Only time will tell. In the meantime, I plan to continue to enjoy this beautiful life while in the in-between.
Maeghan E. Arnold, DNP, APRN, is an Assistant Professor and the Adult/Gerontology Acute Care Nurse Practitioner Specialty Coordinator at the University of Arkansas for Medical Sciences College of Nursing. A native Arkansan, Dr. Arnold lives in Little Rock with her husband, Dr. James A. Arnold, her daugther, Meredith, and two rescue dogs, Libby and Brodie. She enjoys time with family, nature and travel.