“There can be no rebirth without a dark night of the soul, a total annihilation of all that you believed in and thought that you were.” – Hazrat Inayat Khan
With the dawn of a new year, and my next scan date quickly approaching, I’ve been in reflection mode. March will make 10 years since I started working in the hospitality industry, and I still remember the first time I walked through the back hallways of Caesars Palace. I was 25 years old, and I could hardly contain the excitement that was threatening to bubble right out of me. I knew then that my career and my life would have surprises in store for me, but a metastatic kidney cancer diagnosis just three years later? No, that didn’t even cross my mind.
2022 brought me some incredible opportunities in both my career and my patient advocacy work that I never could have anticipated at the beginning of the year, including being asked to serve as the kidney cancer patient advocate for the research group who created the clinical trial who saved my life. But the moment where the profundity of how I have transformed since my diagnosis hit me when I saw this picture taken of me by my amazing SWOG colleague, Dr. Shuchi Gulati.
Kidney Cancer Association was kind enough to invite me to speak at the International Kidney Cancer Symposium in November. They asked me to provide a patient’s perspective on side effect management and quality of life concerns while going through treatment. I felt it was important to provide the physicians and medical teams I was speaking with not just my story, but how they could help the patients and caregivers they work with in improving their quality of life. It goes beyond the medical jargon and tactics – if you understand what a patient is struggling with, you better understand the patient and how to help them. For example, a patient who is worried about transportation will likely not do well with immunotherapy treatments that require frequent infusions unless you help them figure out how to solve the transportation roadblock. It’s a lesson I learned in caregiving from Dr. Vogelzang, whose “social history” notes in my medical files and that of thousands of his other patients was the most extensive I’ve ever seen.
But of course, I had to start with my own “case study.” It didn’t hit me until I saw this picture Dr. Gulati took during my presentation just how far I’ve come. Here I was, presenting in front of hundreds of people in the oncology community at the top of the field, in front of a picture of me at my lowest. It hit me so hard when I first saw the photo that it took my breath away.
I remember when Patrick took the first picture of me – I had just made it after days on end in ICU into my very own private room (no sliding door!), and I wanted to show some of my dear friends who call ourselves “ninjas” that I had received the blanket they had sent. I also figured it may be time for a proof of life photo. I was positively gross at the time, and I had just made the mistake of finally looking down at my abdomen under my hospital gown. Seeing the Frankensteinesque scene of stitches, staples, dried blood, and tubes coming out of me, I didn’t feel like anything more than a science experiment. In the moments before that photo was taken, I had thought, “My life is never going to be the same again.” But I wiped the tears from my eyes and had Patrick take the photo, doing my best to hold up a measly thumb as I tried to convince at least everyone around me that I’d be OK.
I was right. My life would never be the same again. In some of the worst ways, my life would never be the same again – surgery was just Mile 1 in the marathon that stretched ahead of me. Almost four years of being on cabozantinib was no walk in the park. I look back at pictures at myself from that time period and think, my God. I looked like a dead woman walking. While I was still eyeball deep in my own cancer treatment, Mom was diagnosed not just kidney cancer, but lymphoma too, and then died within six months. I’ve lost friend after friend after friend to this disease. I lost my job during COVID, and then my health insurance two months after being laid off. Then, I lost Dr. V, the man who brought me back from the brink of death.
But, in some of the best ways, my life would never be the same again. I remember the first time I was approached about speaking on a panel, and I asked Dr. V about it. I’ll never forget what he said. “You’re in marketing, so you’re a storyteller, right? Seems like your renewed time on Earth would be better spent telling stories about cancer than casinos.”
Point well taken, Dr. V.
I think of all the amazing people – patients, caregivers, oncologists, surgeons, biostatisticians and more – who I have encountered, and the incredibly meaningful and exciting research which I have been on the outermost of peripheries, and I can’t imagine my life without any of it. Do I wish I could have done all of this without almost dying and the eternal fear I live with of getting sick again? Of course I do. But I wouldn’t give any of this up.
Some of my greatest joy has come from some of my deepest pain. How could I ever be ungrateful for that?