I attended an advocacy event a few years ago in DC for metastatic cancers. Journalist Kaelyn Ford was working for Refinery29 (http://www.refinery20.com) at the time and interviewed me while we walked from the Washington Monument to the Capitol building. We've kept in touch, and she currently does freelance work and has interviewed me for pieces for ABC News (https://abcn.ws/2kLdTGF) and most recently for Al Jazeera, which posted her story today (https://bit.ly/2m9sBrl). She sent me questions via email and I wrote up my responses for her. I shared the article on Facebook and decided to share here my full answers to the questions.
As far as my current status, I'm doing extremely well. I receive treatment by infusion every 3 weeks along with a daily pill and periodic injections for bone health. My doctors have been impressed with my response to treatment these last few years and continue to monitor me with regularly scheduled scans. This is a regimen that I will continue for life unless/until the cancer learns to outsmart it, as metastatic cancer is known to do. In that case, we have a plan B waiting in the wings. The hope, of course, is that I will not need that for a very long time.
Below is the write-up I provided to Kaelyn for the Al Jazeera piece.
1. Your name and age, and city/state where you live, if that's ok. Also the general industry you work in.
Amanda Rohaly, age 42, Fairmont, WV. I worked in IT consulting for over 15 years until I discovered that my cancer became metastatic in early 2016. I used paid leave - much of which was donated by coworkers which was amazing and humbling - to take off a full year. Since then I’ve been receiving social security disability. I had been working in a stressful environment and decided that wasn’t how I wanted to spend my days, so I “retired.” To keep busy I help my parents with their respective businesses, and I try to spend as much time as I can with friends and family near and far. I’m always game for hopping in the car for a day-long drive to visit friends. I’ve always loved a road trip.
2. When were you diagnosed, and what went through your mind at the time?
My initial stage 2 diagnosis came in 2011 when I was 34. It was terrifying, although once I learned that it was an early stage and could potentially be cured, it changed me in many positive ways. I became lighter and less burdened by things that may have given me stress previously, and my treatments appeared to have been successful.
In January 2016, however, an MRI revealed that my cancer had metastasized. I spent 11 days in the hospital where we discovered it had spread to my bones including all 3 parts of my spine, my hips and pelvis, my liver, and one of my lungs. It would later also spread to my brain.
In the months following my hospital stay, I had a hospital bed in the living room, a walker, a cane, and needed assistance doing almost everything - getting into and out of bed, getting to and from the bathroom, getting dressed and undressed. My oncologist had told me while I was in the hospital that my cancer was “treatable but not curable.” Only I after I left the hospital did I begin to realize what that truly meant. I had a terminal illness, and that meant I was going to die. I did not know how much time I had, and I’m not sure I have words for what that felt like. Total devastation, fear, desperation. Each morning when I woke up I would begin to cry. I realize now that in those months I experienced the phases of grief, grieving for the loss of my own life.
3. Had you had any previous symptoms?
I’d been having back pain that I initially assumed was just a sign of aging, but it continued to worsen. One morning I took a few steps out of bed and was suddenly jolted with a crippling pain. I screamed and struggled to get back to the bed to lie down. It was excruciating. I could not move the entire day, and that evening my dad suggested we call 911 to take me to the hospital as there was no way I could have gotten into or out of a car. The local hospital (which is not the one associated with my previous and current care) did no type of x-rays or scans and sent me home with a couple of pain pills and a diagnosis of a bladder infection while I continued to cry in pain. I later learned I had a broken vertebrae. I suspect now they might have assumed I was there simply for the pills. The on-duty doctor said he’d refer me to a specialist, but when I called the next day I was told it would be a couple months before I could get an appointment. I spent the next week lying on my back on the couch staring at the ceiling and trying to find a doctor that could see me. The doctor I finally found ordered an MRI which led to the discovery of the metastases, and I was admitted that day to the hospital those 11 days being treated, tested, scanned, and meeting with an army of specialists including my oncologist.
4. What is it like to be a young person with stage IV cancer? Is it tough for other people to understand your experience?
I’d say leaving my professional life, common misunderstanding of the diagnosis, and the lost opportunity to have biological children are the main issues I face.
As far as my career, I’ve essentially given it up. While I don’t regret the decision, I always dread being asked what I do and revealing that I collect disability. I appear to be in perfectly good health if you don’t know my situation, and I usually end up adding that I receive it because of a terminal diagnosis. Not exactly something you want to throw into casual conversation, but always I feel this need to explain.
Because so little discussion happens around metastatic or stage IV breast cancer, most people don’t understand the implications, especially for a younger person who appears to be fine. The treatments I currently receive do not have the side effects that chemo has, so I seem to be as healthy as the next person. People sometimes tell me things like I’m a warrior and I’ll “beat it again.” I don’t usually correct them, but the reality is that I had never beaten it to begin with and statistics show that I will most likely not beat it now.
Due to my particular diagnosis (there are many forms of breast cancer) I had my ovaries removed in 2017. I had already realized that I would probably not be able to have children, and this procedure closed that subject once and for all. I’ve mostly come to terms with that but certainly have my moments. I’m fortunate to have 2 amazing young nephews with whom I’m madly in love and get to spend lots of time. They bring tons of joy to my life.
5. What types of things have you had to get used to as someone battling cancer?
It’s an impossibly strange way to live. I do not walk around each day wondering how much time I have. That would cripple me and prevent me from truly living. Nonetheless, questions like how far into the future I should plan sort of hide in corners of my mind. They emerge randomly. Maybe something said in casual conversation or seen in a movie will trigger a thought. Or maybe it’s scan time. I have brain scans every 3-4 months, and full body scans (PET scans) every 6 months. Scans become a part of life and, in fact, almost define it. Every scan dictates what’s next. Will I continue on with a normal day/week/month after we get the results, or will something show up? Is it minor or significant? Will I need have a procedure or a treatment change, or is this the beginning of the end?
I’ve become very good at compartmentalizing and tend not to stress over all of these types of things on a daily basis. As I said they are always in the back of my mind, but I try to save worry only for when it’s demanded.
6. What do you want to see change in terms of research and funding for stage IV cancer?
Media campaigns, funding, and research for breast cancer continue to focus on prevention. In reality, we don’t know how or why it occurs. As a doctor once replied to my mom when she asked why this happened, we wouldn’t be here if we knew the answer to that question. This is not to say we should drop preventative measures, but they are simply not enough. We absolutely must spend as much or more time, money, and effort toward treating metastatic disease as that is what ultimately kills us.
40,000+ people in the U.S. die of breast cancer each year. That is a number that has not changed in 40+ years. When breast cancer metastasizes, or spreads to other parts of the body, that is when it becomes deadly. Around one third of diagnosed breast cancer cases will ultimately become metastatic.
While survivorship is certainly worth celebrating, we must not forget those of us who still deserve to be saved. A researcher at an advocacy event I attended explained that focusing on research of metastatic disease was considered a career-killer, treated as a lost cause. This brings to mind a book called “The Death of Cancer” by Dr. Vincent DeVita, one of the pioneers of cancer treatment. The book was mentioned to me at that very event by a fierce and respected advocate for metastatic breast cancer, a woman named Beth Caldwell who founded an organization called MetUp. In his book Dr. DeVita discusses the history of cancer treatment and the fact that attempting to treat any cancer at all had once been thought of as radical and a waste of time. My life is neither a waste of time nor a lost cause. Neither was Beth Caldwell’s. She passed away in 2017.
