Featured Story

Volume 24, Number 5: May 2023

My Journey from Palliative Care Specialist to Cancer Patient

By Ebtesam Ahmed, PharmD
IAHPC Board Member; Clinical Professor, Department of Clinical Health Professions, St. John’s University College of Pharmacy and Health Sciences, New York City, New York, USA

My sister and I attended the Move4HER event in 2021 to increase awareness and drive early diagnosis of gynecological cancer. Photo used with permission.

I grew up with my mother's saddening stories about how my grandmother died from ovarian cancer. Later in life, my aunt was diagnosed with breast cancer, followed by my older sister and my beloved mother. I recall my mother suffering from post-op pain following her hysterectomy, and the impact of cancer treatments on her physical and emotional well-being. At college, I knew I wanted to help cancer patients, which led me to palliative care. It is a discipline that I am so grateful to I have found, not knowing that it would help me to cope with my own cancer journey. 

Two years ago, after genetic testing to detect my cancer risk, I discovered that I am a carrier of the BRCA-1 gene associated with hereditary ovarian and breast cancer. After elective prophylactic surgery, I received the devastating news that I had ovarian cancer, and after a complete work-up, I was also diagnosed with thyroid cancer. 

The diagnosis was hard;
telling my family was worse

The diagnosis shook the ground beneath me. It provoked enormous worry, especially having seen many loved ones fall victim to cancer. I knew the battle ahead would be challenging, especially since I did not choose cancer; cancer chose me. Being told that you have cancer is hard. Having to tell the people you love is nearly impossible. I decided to keep it on a need-to-know basis, not to overwhelm them with fear and anxiety. 

My cancer journey began with a radical hysterectomy, followed by surgery to insert a port, five months of grueling chemotherapy, and another surgery to remove my thyroid. Every time the nurse came with the chemotherapy machine, my anxiety and fear swelled. The panic began in my gut. When I looked at my sister, who always accompanied me, she had tears in her eyes. I knew that all she wanted to do was banish it all. Her look of helplessness broke my heart a million times over. I was always elated when the day was behind me. 

I feel privileged and humbled by the care provided at MSKCC. They not only made a devoted effort to help cure my cancer, they also cared about my quality of life. Photo used with permission.
"You do not have to like any of it"

Treatments were followed by days of excruciating pain, fatigue, and nausea; they triggered physiological and psychological changes. As a palliative care expert, I was familiar with the signs accompanying significant illness, but it was very different to go through them myself. You are never really ready or entirely on board. The therapies caused bodily changes, such as hair loss, nausea, vomiting, terrible pain, problems concentrating, weight loss, and loss of sensation in my feet and hands. The cumulative toll made even the most basic activities taxing. I never knew if I would feel well or sick the next day, or even the next few hours. It was the same for all six rounds of chemotherapy, but after the third treatment, it took me longer to come around each time. There were days when I hated all of it, but a dear colleague told me, “You do not have to like any of it; you just need to do it.”

I had to reframe what it meant to be strong

The treatment triggered menopause in my 40s, a profound challenge due to the accompanying hot flashes, mood swings, lack of energy, and chronic pain. I had to reframe what it meant to be strong and resilient, and embrace newfound constraints. My awareness of my condition was helpful, as well as my grit. I needed to pay attention to—and be gentle with—my physical self, and learn to handle things one day at a time.

My brilliant, genuine medical oncologist, Dr. Carol Aghajanian, Chief Gynecological Medical Oncology Service at MSKCC, left, and medical fellow Dr. Sushmita Gordhandas. Photo used with permission.

Thanks to my education in palliative care, I knew I could take better care of myself holistically. My self-advocacy for palliative care support helped to restore my confidence and a sense of normalcy. It also eased my mental and emotional burdens. Palliative care counseling gave me a secure environment to discuss my worries and taught me techniques to control my symptoms. 

Activities that worked; people without whom 
I would not be in this place
My beloved and supportive family, whom I am very fortunate to have. From left: my brother-in-law Walied, myself, my sisters Heba and Hala (center) hugging my nieces, Kenzy and Rowan. Photo used with permission.

I started practicing gentle yoga to help with pain and nausea, attended many online support groups, and learned how to meditate. There were times of grace and closeness with my family, particularly my sister Hala, who was my rock. I received an outpouring of love and support from family, friends, and colleagues. These incredibly compassionate and caring people, including all those I encountered at Memorial Sloan Kettering Cancer Center (MSKCC), made my journey calmer. 

I notice the scars from the port and surgeries daily. It constantly feels like I am looking at someone familiar, but who is not completely me. My energy levels remain unpredictable; I am jolted into accepting that this is really me now. I treat myself with more kindness and understanding and finally allow myself to relax when I need to. 

I am happy, hurting & healing

My diagnosis changed my life completely. I may have survived cancer, but its aftermath remains. I have chosen to be positive and focus on the good parts of life to push through the struggles. I can’t claim to be entirely successful, but I am teaching myself to be patient and calm. I have accepted the inevitability of the situation, even as I continue my quarterly check-ups, hoping to remain in remission. I am happy, hurting, and healing simultaneously, a constellation of emotions. I have learned that I cannot rush through my emotions or feelings. Instead, I sit with them, honor them, and treat them like visitors; they are here for a visit, not to stay forever. I have to give time some time. 

My hope is that all cancer patients and their loved ones can have easy and early access to palliative care to ease pain, boost quality of life, and comfort them. It is not just about helping people die peacefully, but also about ensuring they get the most out of life, no matter how tough things get. Governments should respect it as a fundamental human right.

Read Ebtesam Ahmed's bio.

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