Cancer is a numbers game. For instance, one out of three people will be diagnosed with cancer
in their lifetime, adding up to more than 1.7 million new cases of cancer in the United States each year, according to National Cancer Institute data. That means there will be more than 1.7 million new cancer stories.
This is my story.
I work at Stand Up To Cancer (SU2C)
and in the mother of all ironies, I was diagnosed with stage 4 cancer a little over a year ago. Specifically, metastatic esophageal
February 25, 2018 seems like yesterday and forever ago. I suppose days that change your life feel like that. Two weeks prior, I had gone in for my annual physical and genuinely never felt better. I had become an avid cyclist, I was logging 4,000 miles a year and in the midst of preparing for an annual 135-mile ride (note to the Tour de Laemmle: I plan to be back in the saddle, so save me a spot!). During my appointment, everything checked out except for one blood test. I had a very high alkaline phosphatase level and an ultrasound was ordered. I was concerned, but not alarmed, because that test result could be from a myriad of causes. And, besides, I felt fit as the proverbial fiddle.
Then, over the course of seven days, I developed aphasia (I couldn’t find the words I wanted to say) and the loss of function in my right arm to the point of complete flaccidity. My brother took me to the emergency room on a Sunday morning that neither one of us will ever forget. A stroke event was immediately ruled out, so it was onto a battery of scans and then the interminable “twiddling your thumbs while laying on a gurney in the bustling hallway.”
The time from when the somber neurologist introduced herself and the wait for ER staff to clear a private room, so she could talk to us, remains a blur. You don’t ask for a private room to share good news. I do remember bits of the awkward small talk and strange questions as she remained reserved about the diagnosis until I was wheeled into an austere examination room.
Once we were secluded, she sympathetically broke the news that the MRI revealed a mass, most likely a tumor, on my left frontal lobe. It was like a car crash — time seemed to speed up and simultaneously slow down to an almost out of body experience. The mind does strange things when faced with news that you never thought you would hear — like trying to recall when that carton of milk in the fridge expires as it starts to sink in that you might not be going home tonight. Or any time soon.
While the initial bad news is a hazy memory, I’ll never forget the indelible moment when the neurologist returned an hour later, this time her face was the complete opposite of inscrutable. I have to admit that I laughed out loud while thinking, “What could be worse than being told I have a brain tumor?”
Well, the CT scan subsequently showed masses in my lung, liver, esophagus and possibly my pancreas. A veritable cancer jackpot. And now all I could think was how terrible it would be to have to break that news to someone. Unfortunately, that someone was me.
Less than a week later I was laying on the operating table having brain surgery to resect a tumor the size of a golf ball. The surgery was a success and when I woke up, my symptoms had disappeared. They had been caused by the pressure from swelling. In the weeks that followed, I was treated with adjuvant radiation and the biopsy confirmed that this was a metastasized tumor. Now the real work began for my oncologist to identify the primary cancer.
It was discovered that I am HER2-positive (typically associated with breast cancer), which meant I have an aggressive form of cancer that is potentially responsive to treatment. It also indicated that my primary cancer was esophageal, and an endoscopy confirmed it. Now, we had a game plan and I immediately began a chemo regimen (TCH) which resulted in pronounced tumor reductions.
To this day, I receive a Herceptin infusion every three weeks that seems to have stabilized the metastasized tumors, but my esophageal wall continues to thicken. Our next move is to begin treatment with immunotherapy
. I may have systemic cancer, but our hope is that it will become a manageable chronic condition.
I understand that with any kind of life-threatening diagnosis, it is an intensely personal decision on what information to share and who to share it with. From day one, I have been completely open and honest with the world. And the support I’ve received in return? Unbelievably overwhelming and absolutely humbling.
I dreaded telling my parents this horrible news, but they have been so much stronger than I could have imagined. My brother could not have done more for me; all without a moment’s hesitation. My friends immediately formed an ad hoc support network. And it will take another post to adequately explain how much my colleagues at SU2C have done and continue to do. I owe them my life and I will never find the proper words of gratitude for all who have stood with me.
It still boggles my mind how during the worst of times, you are able to witness the best in people. One of the hardest things I had to learn was to ask for help when I needed it. When your family, friends and co-workers offer to help, they may not know what you need so don’t be afraid to ask for rides, shopping assistance or just someone to talk to. They are there for you.
I’ve been told I am brave, strong and even inspirational. I’ll let you in on a secret — I’m just doing the best I can to figure out how to keep putting one foot in front of the other like everyone else who has to walk this path. By far, the best advice I’ve ever gotten (fortunately at the beginning of this journey) is to take everything step-by-step. By focusing just on what is ahead of me, what I need to prepare for and what I can control — like diet, exercise and rest — I have been able to keep my mental health in a good place and not get overwhelmed.
Cancer can indeed be a numbers game, but I am no way just a statistic — no one is. This journey has given me a newfound perspective on life and the amazing work that SU2C does. This is the ongoing story I want to share along with things I’ve learned and things I wish I knew. And, hopefully, other stories shared from the countless perspectives of fellow patients, survivors, friends, family, caregivers and researchers will continue to inspire others — as we are all in this fight.
We Stand Up To Cancer. Together.
The views expressed are those of the author and do not necessarily reflect the views of SU2C.