Samira was diagnosed with breast cancer a week after turning 30. An AYA cancer survivor, she is on a mission to help patients, survivors, and caregivers thrive during their cancer journeys.
Transforming into the patient from hell
I had just turned 30. My birthday is 2 days before my partner’s birthday, and we always take the week to travel somewhere. As soon as we returned from our diving trip I found a lump. After weeks of dismissing it, I was diagnosed with breast cancer. Hearing the words “you have cancer” is unlike anything I’ve ever experienced. Even though early stage breast cancer has very good survival data, my cancer diagnosis shocked my system to the core, and threw me into a whole new world to navigate.
My life changed in ways I couldn’t fathom. It had taken a sharp turn and left me utterly unprepared. My life as I knew it came to a crashing halt. Planning became a luxury that I could no longer afford. No longer could I plan my next few weeks, or months, and definitely not years. It’s a very unsettling thing. I recall my mother saying she would love to have me home that winter. My reaction was I had no idea if I would make it home. At that point in time, there was too much uncertainty for my future. My weeks were spent getting diagnosed, weighing options, identifying a treatment plan, communicating the uncertainty, and not planning for my future. The period of tumultuous emotions, endless task lists, complex research, and gathering of opinions had begun. It was the ultimate loss of control.
Let me tell you a little bit about my life pre-cancer. I am your quintessential Indian immigrant transplant to Silicon Valley. I am a self-proclaimed nerd with a get-things-done while obsessing-over-productivity personality. I wear athleisure, go on hikes and drink hipster-overly-expensive-coffee. My days, weeks and months are planned. I do have my moments of spontaneity, which are usually strategically inserted into my life. With cancer, the “planner” in me had no outlet. There were no (and still aren’t) predictable structures, patterns and frameworks to guide me through diagnosis, treatment and survivorship.
My diagnosis was due in part to my acquaintance with the Chief Medical Officer at the medical diagnostics startup I had joined. He has come to become a close friend, mentor and confidante. Back then, I’d only just met him. He was the individual who connected me to my oncologist. He also introduced me to Stephen Schneider. Stephen was a Professor of Environmental Biology and Global Change at Stanford University. He passed away long before I’d ever had a chance to meet him. He was a survivor of an aggressive cancer — mantle cell lymphoma. He wrote a book titled “The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too.”
Stephen can’t know this, but his book became the bible for my cancer experience. It gave me the courage to voice my opinions, raise my questions, stand by my values and make better decisions. It transformed me into a patient advocate when I didn’t know what a patient advocate was.
There are numerous small and big ways he shaped my experience. Here are 2 lessons:
1. You always have a choice, even when you don’t think you do: Stephen reminded me that despite losing control over our lives, we did in fact have a choice. We had the choice to try an experimental treatment, we had the choice to find a clinical trial, we had the choice to ask for a different drug, we had the choice to find a new oncologist, etc. Sometimes these choices feel daunting. Very often we don’t think we have the agency or we think choice doesn’t exist. In this fight for our lives, we do have a choice. Even if it’s a choice between something bad and something terrible.
2. If you don’t advocate for yourself, no one else will: Our oncologists, surgeons and radiologists are living lives in accordance with their training and what the system allows. It is our job to ask questions, to probe, to inquire, and to ensure that we understand the path ahead. If that means spending more time on the phone advocating for ourselves with the insurance company, or the nurse or the pathologist, then so be it.
You might be wondering how the above lessons transform one into the patient from hell. The patient from hell is insistent that they understand what their condition is and how it is treated. They read everything they can get their hands on. They come up with questions and ask for the answers. They seek second, third, and forth opinions. They persevere with insurance companies. They stay on that awful customer service line, even when they are exhausted. They come to their oncologist asking for more data, for a rationale, and for explanations. They work with their nurses to understand how to get better supportive care. They try to get control over the things they can control. They know how they want to live out their time, and they communicate what that means to them. Their questions and opinions are not always welcome. Sometimes they are at odds with their care team. Sometimes they are at odds with their family.
Over the last few years, I am certain I have driven my care team a little nutty. I know that my family has been both pleased and alarmed at the consequences of advocating for myself. But they have been patient with me and continue to stand beside me as I navigate this new and frightening post-cancer world. For that I am eternally grateful. I have gone back and forth on whether I want to embrace the identity of “the patient from hell.” Eventually, I have realized that I need to embrace it to ensure that I live my life armed with as much information as possible. And because I am the patient from hell.