By Dr. Katherine O’Brien
On Super Bowl Sunday, 2017, I felt a lump in my breast. In a surreal sense, I knew right away it was cancer. My only knowledge of the symptoms of breast cancer was “a lump.” That brief moment set me on a nine-month journey into the depths of cancer treatment and a lifetime of vigilance, screening and anxiety about the possibility of recurrence that I had never anticipated.
Riding a Roller Coaster of Emotions
My story is similar to those I hear from the patients and families I see every day at work. As the Brain Injury Program leader and clinical neuropsychologist for the Disorders of Consciousness (DOC) Program at TIRR Memorial Hermann, I work with people on a rollercoaster of emotions, living a life they never expected. Now, I was on a similar rollercoaster.
I called my OB/GYN first thing on Monday to make an appointment for Tuesday and then went to work feeling I had done all I could at that point. My appointment was brief. The doctor knew immediately I needed further workup so I was referred to the Memorial Hermann Breast Care Center-Texas Medical Center (TMC), for a mammogram and ultrasound. As I went down the elevator from the 20th to 16th floor my mind was racing with thoughts about my career, my patients and my family – and what I would tell them. And then my HAIR – would I lose my hair?!
I had never seen a breast ultrasound or mammogram; I’m used to looking at CT scans and MRI of the brain. Despite that, I knew the image on the screen was not what we were supposed to be seeing. Fortunately for me, there was a cancellation that afternoon and they were able to slide me in for a biopsy (the next step in diagnosis) just two hours after my imaging was done. I walked through the Texas Medical Center, a place I go daily for work, as a foreigner. I no longer felt my comfort as a doctor at TIRR Memorial Hermann. Now, I was a patient and quite possibly a cancer patient.
Waiting for the Call
The biopsy was done and I went home to wait. Not only wait, but wait alone. I didn’t want to worry my family if it was nothing, but then again, what if it wasn’t?
I received the call on Friday Feb. 10. After a brief hello, my doctor calmly asked “where are you?” This question confirmed my suspicion. She informed me of the preliminary diagnosis and explained the next steps. I don’t remember much of the conversation, but I knew what I had to do and immediately catapulted into action.
Step 1: Call my parents. It was one of the hardest calls I have ever made. When my mom picked up the phone I asked if dad would get on the line with her. I’m sure my parents felt that same sense of dread I did when my doctor asked me where I was, ‘this can’t be good, why does she want us both on the phone, what is she going to tell us?’ We talked and allowed the emotions to flow, but I was anxious to get moving because I had an appointment to make. I quickly composed myself and went to work.
Step 2: Appointment. If I could have gotten the appointment that day, I would have taken it, but I settled for Monday, literally the next business day appointment.
Step 3: Research. I started compiling questions for my upcoming appointment by scouring online cancer forums and reading resources I found. I was trying to be a good patient.
Discussing My Treatment Options
The day had arrived and I was walking into the Memorial Hermann Cancer Center-TMC to meet with my breast surgeon. I was feeling confident with my pages of questions in hand. The doctor walked in and she calmly and thoroughly described the process and the plan. At that moment, I went blank. I looked down at the pages of questions I had prepared and researched, and many of them were suddenly irrelevant. I didn’t have the option to choose between a lumpectomy and mastectomy; that ruled out the first page of my questions. Other options I had researched were also eliminated through our discussion. The size, location and preliminary pathology of my cancer would dictate the treatment. I needed help processing what I was being told, the vocabulary was new, the words were large; this was an area of the body I didn’t know much about.
One of my jobs as a clinical neuropsychologist is to help patients, families and caregivers understand the process after brain injury; the cognitive, behavioral and emotional changes they face, as well as what their prognosis may look like. I sit down and talk with them, spending time helping them understand this new world of brain injury that has been abruptly inserted into their life. I have always appreciated the challenges for patients and families given the sudden nature of brain injury and the unfamiliar vocabulary used to describe their condition and treatment; or so I thought I did.
Now, here I was in my doctor’s office, with my doctor clearly, compassionately and thoroughly explaining my diagnosis to me, and I didn’t understand. As the patient, I had a new-found appreciation of how important it is to explain and care for the patient and their family as they are trying to understand and process their ‘new normal.’
Adjusting to My New Normal
That week, in just the first four days, I had five doctor appointments, FIVE! I am a healthy, active, 34-year-old woman; is this going to be my new normal?
Surgery was scheduled for Feb. 28, just 18 days post-diagnosis and only 23 days from the moment I felt the lump. While everything was moving as quickly as possible, it didn’t feel fast enough. The patience and uncertainty I speak about in brain injury every day with my own patients was now slapping me square in the face. I had to live patiently and wait and see what happens.
I continued to stay busy attending different doctors’ appointments; it felt like I had a second full-time job. The stacks of paperwork in my living room were getting higher. The thoughts racing through my mind were also building up. I worked in the medical field and yet here I was, confused about my health care benefits, calling the insurance company and doctors’ offices regularly to clarify how everything worked. This was a whole new area of health care for me. We routinely work with insurance companies for our patients, but this was different, this was for me.
Surgery Day Arrives
Surgery day was upon me. I had my mastectomy and then the waiting and uncertainty started all over again. I had to wait to hear about the pathology, wait to hear about genetic testing, and wait to hear about Oncotype DX testing (a test to determine the need for chemotherapy). Chemotherapy is a scary word; it’s a word that made me feel like a REAL cancer patient, but a word that didn’t apply to me, yet.
My tissue markers came back consistent with the most common form of breast cancer ER/PR+ and HER2- with clean lymph nodes, which was the best-case scenario. At this point I was thinking, I had the surgery, it hasn’t spread and I’m in the clear. All that was left now would be reconstruction and I could put this all behind me. Unfortunately, it wasn’t going to be that simple.
What Genetic Testing Revealed
I received my genetic testing back and I had tested positive for a mutation on the BRCA2 gene. A gene mutation I didn’t know I carried until I was diagnosed with breast cancer. It meant I had an increased risk for developing breast cancer, ovarian cancer, pancreatic cancer and melanoma. I had also received my Oncotype DX assessment. This is a test that evaluates the risk of recurrence, and also helps an oncologist determine how much a woman would benefit from chemotherapy. My score landed right in the middle of the gray zone where there is no definitive data on whether the potential benefit of chemotherapy would outweigh the risk of side effects.
My doctor reviewed the pros and cons with me, citing all the most recent research. She provided me with all the information I would need to make an informed decision, but essentially left it up to me. I truly appreciated her respecting my autonomy in making such an important and personal decision, but part of me wanted her to just tell me what to do.
Choosing to Have Chemo or Not
I thought long and hard about whether or not to have the chemotherapy. I talked it out with my friends and family. My first concern was my career. I had worked hard to earn my Ph.D. I was proud of what I did every day and I enjoyed it. I was part of a program that is highly specialized; there are only a handful of DOC programs in the country. What would happen to me and to my patients? After my doctors persuaded me to stop thinking about my career and to start thinking about myself, I finally had some clarity.
I had gone through two breast surgeries on the left side and I had ‘clean margins,’ meaning no cancer cells were seen on the outer edges of the breast tissue that had been removed. But there was a small, nagging voice in the back of my head that kept telling me, all it takes is one cancerous cell. One cell in the midst of billions and BOOM more cancer. It was possible that they did in fact get every single cancerous cell and that I might still develop cancer again in the future due to my gene status. After all that I had been through during the last few months, the idea of recurrence was sickening. If I did not do the chemotherapy now, would I look back on this decision and have regrets? That was something I just couldn’t live with and thus the decision was made to begin chemotherapy.
The first treatment went well, everyone was wonderful and explained each step of the process. As expected, I felt horrible a few days later. Despite this, I was able to get up and return to work the next Monday. In hindsight, that choice was right for me as it kept me moving when I would have otherwise wanted to stay in bed. As the days progressed I started to feel better. After 2 weeks, I was starting to feel back to myself, other than a terrible taste in my mouth. But there was something else on my mind, when was my hair going to fall out? What if I am the exception? I carefully brushed it as little as possible so as not to agitate it.
Dealing with Hair Loss and Other Side Effects
Then it happened, right when they said it would. Approximately 16 days after my first treatment, when I felt like all the side effects had gone away, my hair began to fall out. I knew what I had to do, it was time. I was ready to make the decision to shave it off myself. How did I come to that conclusion so quickly? I guess when you are picking up piles of hair everywhere you go, it’s easier to just get rid of it. I took a friend’s hair clippers and slowly buzzed my head. I tried to have fun with it, shaving it into a mohawk before cutting it all the way down, but watching my hair fall to the ground was surreal. And then it was done. There was no going back. The image looking back at me in the mirror startled me every time. It wasn’t something I was going to get used to quickly.
My second chemotherapy treatment came shortly thereafter. I didn’t have time to be sad about my hair; I was already too tired and weak to care after the second treatment. There was one benefit, as I struggled to get ready for work each day, I was thankful I didn’t have to use up any energy to style my hair. Flipping on a wig of synthetic hair that fell perfectly into place every time became a significant time saver. Treatments three and four came with their own challenges, as the side effects change as the chemotherapy drugs build up in your body. Despite going to work, I was not able to see my patients because I was immunocompromised, meaning my immune system was weak; but I longed to see my patients. As tired as I was, my patients, unbeknownst to them, were motivating to me and encouraged me to be strong. I still got to walk past the therapy gym at TIRR Memorial Hermann each day and see them putting in work. I’d seen this so many times before and it’s always inspiring, but this time it was a different sort of inspiration I was feeling.
I am eternally grateful to the team at the Memorial Hermann Cancer Center-Texas Medical Center. From the front desk, to the registration women, to all my wonderful nurses, physician assistants, pharmacists and doctors who all worked to make me feel comfortable in a place no one really wants to be. I often sat in the waiting room, looking around and feeling like I didn’t belong. I was too young to be hanging out in the cancer center. I wasn’t sick like the folks around me, somehow I was different right? My friends would come with me to keep me company during chemotherapy. The nurses and my genetic counselor would visit while I was receiving treatment. I have tried to block out the days of feeling like I didn’t want to move or talk; the days it would take me forever to get up and drag myself to work because by the time I arrived I felt like I needed a nap.
Ringing the Bell
On July 12, 2017, my doctor was able to describe me as ‘in remission’ with ‘no evidence of disease,’ the words everyone who begins this journey longs to hear. While at times I had felt disconnected from other patients, maybe because I was often the youngest in the room, the entire waiting room and cancer center came together to watch me ring the bell, signifying the end of active cancer treatment. It was a day that I will always remember.
I tell my patients on the brain injury unit all the time, ‘rehabilitation is the hardest job you will ever have.’ They are pushed by physical, occupational and speech therapists to do tasks that once came so easily yet now take every ounce of their power to accomplish. Thinking about my patients helped me to push through my fatigue, weakness and all around yucky feelings. Brain injury, breast cancer, stroke, whatever it may be, and whatever the outcome may be, we are all pushing to be better. My experience as the cancer patient and now cancer survivor has given me a new, more authentic and connected relationship with my patients and families.
To learn more about breast cancer screening, diagnosis and treatment, visit http://cancer.memorialhermann.org/breast-cancer-awareness-month/