When the doctor becomes the patient.

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.

Next Steps

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.

Beginning Chemo

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/

Comments

  1. Thank you for sharing your journey. You are truly a motivator for many. May the Lord the great physician continue to bless you and keep you under His Wings!!

  2. Beautiful story…thank you for sharing about your ups and downs. Truly you are courageous. You are also very blessed to have a good support team. You are truly motivational and a great example of hitting the issue head on. God bless you and your family!

  3. Thank you for sharing your journey to wards recovery it was hard but thank God for your decision to take chemo and go forward .God bless you

  4. Wow, Katie, I had no idea this is what 2017 has been like for you! I appreciate you sharing your story, and how it has affected your continued great work with the DOC program at TIRR MH. You are a fighter, and it shows for you and for your patients. May God continue to watch over you, give you courage to face each day with positive thoughts, and provide you with strength and endurance to complete this journey called life.

    I miss you and pray all the best for you.

  5. Dr. O’Brien,

    I, too, am a breast cancer survivor since 2014, welcome to the group. It was a journey that took me totally by surprise because I was so faithful every year to have my mammograms. I have a family history of breast cancer and I was diagnosed at the same age my mother was diagnosed in the 1980’s.

    As a clinician, I knew after seeing the necrotic biopsy samples that I had cancer but still I held out hope that I was wrong as I waited for “the call”. It was confirmed a few days after the biopsy when the breast surgeons assistant called and asked me to come to the office now but I had a full list of cardiology patients to see. The breast surgeon called me 20 minutes later and delivered the news everyone dreads…..the dreaded “C” word. It was at that moment I knew my life was about to change drastically.

    Six months after completing all of my cancer treatment surgery, chemo and radiation, I had my first 6 month imaging studies (Mammo and Ultra Sound) to complete. I was very nervous but feeling like I had beaten this thing until the radiation oncologist said that she wanted to biopsy in the same spot. I just broke down and cried feeling like I had gone through all the treatment only to have it back within 6 months? They didn’t want me to leave the breast center and fit me into the schedule that day for another biopsy of the same area. But, by God’s grace, it was benign surgical changes.

    During my leave of absence, I missed seeing my patients every day but returned to work as soon as my oncologist would release me. I have a whole different perspective on patient’s and what they go through and I frequently find myself sharing my story with them. When I am dealing with their issues and they find out I am a cancer patient, it changes everything and they know you understand them on such a deeper level. I am forever grateful for my supportive husband, family and friends and relied heavily on my faith to see me through.

    I see you have the awesome Dr. Anneliese Gonzales on your team. I did too and am grateful to her for stepping in when I had to change oncologists.

    I pray you remain cancer free and that it never recurs.

    God Bless,

    Jenny Turner, ACNP , Cardiology, MHNE

  6. Thank you for sharing your story Dr. Katherine O’Brien, I am a breast cancer survivor my self, 4 years now in remission, and your detailed story while brought back memories, still inspires me. I can truly say I know how you feel because I went through all the stages you mentioned and more. May the Almighty God continues to bless you abundantly with good health for many many years to come. I can’t wait for you to ring your 5 YEAR remission bell, God’s willing.

    Wishing you an awesome life

  7. You are so beautiful, and I truly admire you for sharing your story with me. I now know the importance of getting my Mammo every year, no matter what. Thank you for saving my life to stay on top of this very important issue in being a woman and being there for others. You are a gift to us, Enjoy

    km

  8. Hey beautiful! You are as inspiring today as you have always been to so many others. Blessings to you. Thank you for sharing yourself and your story. Overcoming looks awesome on you!

    Hugs to you my friend,
    Dr. Rose

  9. I have never met you before but after reading your story I feel like I should share my thoughts with you. I am a physician and cancer survivor. I know exactly what you went through.

    You have to look at cancer as a chronic illness. This is what I tell my pts. There is no cure for DM, HTN, Asthma or most of the chronic illnesses. Why do we worry about cure when it comes to cancer and become so apprehensive? It feels like, life comes to a standstill when you get this diagnosis.

    But no, you should not think that way. Think you are diagnosed with a chronic illness and that you will manage it just like any other illness. If you are meant to live till 100 nobody can stop it. Enjoy every moment. Do things which makes you happy. Only if you are happy can you make other people happy.

    Life is like a rollercoaster. You decide whether you want to be the one sitting in there holding tight with the fear of falling or you want to leave your hands, scream and enjoy. Ride will end only when it is time to end. It is not in anybody’s hands.
    If a person was to fall from the rollercoaster breaking, both the riders would fall whether they are holding tight or leaving the hand, screaming and enjoying.

    SO WHY NOT LEAVE HANDS, SCREAM AND ENJOY LIFE.

    GET UP EVERY MORNING SAYING IT IS GOING TO BE A GREAT DAY AND IT WILL BE.

    WISH YOU ALL THE BEST!

    THINK POSITIVE. NOTHING MORE POWERFUL THAN THAT.

  10. Dr. O’

    After reading your story our family is HeartBroken for you , i hope you understand that the short time that we spent at TIRR, that You, Dr Kothari and the rest of the staff in the Brain Injury Dept has left an Everlasting Impression on us. You personally have a huge spot in our Hearts. With how you interacted with out daughter Ashley. You an amazing Woman and Doctor, and anyone that meets you should be the better for having done so. We do Love You doc and May GOD Grant you all of the Good Grace that your able to Fathom. God Bless You Today and Always!

  11. Dr. Katherine,

    You are a beautiful woman with an inspiring story. Thank you for sharing.

    May God bless you with continued good health and with the compassion you already obviously have for your patients.

    Rev. Doug Laws, Chaplain
    Supportive Medicine / Memorial Hermann NE

  12. What an inspiring story during, Dr. O’Brien. Wishing you nothing but good health in the future!

  13. Dr. Katherine O’Brien, I commend you on your journey of defeating CANcer. I pray that you continue to hold you near in this journey of life. PEACE,LOVE,& BLESSINGS to you and your family.

  14. God is great, I commend you on your journey. I lost my dad, great grandmother, uncles, and aunties to cancer and it was and still one of the hardest things to deal with. Dr. Katherine O’Brien I pray God continues to hold you near.

  15. WOW!! Thank you so much for sharing and sharing with such detail. My mother is in her third year of treatment. She has a rare form of breast cancer, but her prognosis has improved after having endured radiation treatment, a unilateral mastectomy, and continued chemotherapy. My mother is very protective and always wants to paint the sunniest picture, so it has been a challenge for me to gain insight into the angst felt by so many cancer patients. Your piece truly sheds light on those personal challenges.

    Best of wishes on your journey.

  16. Thanks for sharing this beautiful story of your experience. You motivate all of us to be vigilant and stay healthy!

    And you look great with short hair 🙂

    Here’s to many more happy, healthy checkups!

Leave a Reply

Your email address will not be published.