As a caregiver, you rarely have 10 seconds to think or reflect on anything, but with my husband gone now, I find myself looking back more than ever. There are so many things we did right, and so many things I’ll probably always feel unsure of.
I had my life together, I mean really, impressively, together. I was 28, living in New York and working as a Features Editor for Food Network Magazine (my dream) and I had just recently gotten married to a doctor (my parent’s dream).
All jokes aside, that doctor was named Jon Marc, and he was my dream too — the answer to a lifetime spent wondering if soulmates really existed or if marriage was something I’d ever really want. At that time, Jon was a neurology resident at NYU Langone, one of the best neuro programs in the country. We were a modern-day power couple, and when people would say that I would laugh and be like “no way you’re crazy!” but they were right.
Also, we were very funny and kind of adorable (in my unbiased opinion). That life made sense — it was one I had built off hard work and some luck, but mostly hard work. Everything had fallen into place in a way that was so much better than I imagined. When Jon proposed at Central Park a couple of years earlier, my first reaction was to say, “I can’t believe my life gets to be this good.”
Then, one day in February 2018, after Jon complained about a series of headaches and some memory loss, we went to the emergency room to make sure it was just a flu. As a neurology resident, Jon knew that some of those things were symptomatic of brain tumors, but because that was a lot of what he saw all day, we both assumed he was just being overanxious.
That night at the ER, a surgical resident asked Jon if he wanted to look at his MRI scan, and in that instant, Jon saw his future shorten before his eyes. He was diagnosed with glioblastoma, a grade 4 brain tumor. It wasn’t just that he had a deadly brain tumor, but also that it was lodged deep in his left temporal lobe — hard to get to surgically and right where his speech and comprehension centers were located. He knew this because he had read hundreds of scans in his lifetime, always hoping he’d never be in the situation to read one like this of his own.
In four short months of marriage, I went from writing wedding thank you cards to filling out advanced directives. Before I ever had the time to get comfortable being called Jon’s wife, I was his caretaker and then his widow.
Everything about Jon made him a hero, but the way he chose to live his life when faced with a terminal diagnosis was nothing short of magic. He never felt sorry for himself and rarely felt angry. He spent every minute and ounce of energy enjoying the time he had and making sure the people in his life enjoyed their time with him too. For years, Jon fought like a true champion. His bosses and colleagues at NYU became his doctors and lifesavers.
He had a resection surgery, a shunt surgery and a clinical trial where a virus was injected into his brain cavity. He tried immunotherapy, chemotherapy, radiation and experimental medications. We had a string of a few good months here and there, but the tumor always learned and grew back. It was something we knew would likely happen but were hoping wouldn’t. As I told Jon in that first week, we’d just have to outrun it.
The longer he stayed alive, the more time it gave doctors to come up with better treatments and cures. We ran fast, but the cancer was faster. Jon was only expected to live somewhere between 10-15 months, but he lived for 26 — impressive and outstanding, just like every other aspect of his life. Jon was incredibly humble and would turn bright red if he read that sentence, but it would be a disservice to his memory not to tell you just how great he was.
On April 17, 2020, the world lost an incredibly driven and caring doctor, and I lost the kindest, funniest, and most loving person I’d ever known.
As a caregiver, you rarely have 10 seconds to think or reflect on anything, but with him gone now, I find myself looking back more than ever. There are so many things we did right, that I look forward to sharing with you all, and so many things I’ll probably always feel unsure of. In cancer, there are no “right” answers, but all of us, caregivers, fighters and survivors must move forward knowing we did what we could with the information we had at the time. I recognize that I’m still doing that now — living my life in a way that I hope Jon would be proud of.
Jon’s passion was helping others, so writing here I hope I can help others too, even if it’s just to feel less alone in a world where unexpected things happen. As Joan Didion said, “We imagine things that we wouldn’t be able to survive. We have no choice, so we do it.” So, let’s do it.