Erica Finamore

Erica Finamore is an editor and writer from New York City. After 26 months of caregiving, she lost her husband to glioblastoma, a terminal brain cancer, at age 30. She is a brain tumor research advocate and member of the Gray Nation Endurance Team through National Brain Tumor Society.

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.

Articles

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.

There are No ‘Right’ Answers When it Comes to Cancer

On February 25&#8203;, 2018 I was 28 — a newlywed working at my dream job at Food Network Magazine. My husband, Jon Marc, also 28, was my college sweetheart, and a neurology resident at NYU. Jon had always wanted to go into neuroscience&#8203;. &#8203;His grandfather had suffered from Alzheimer’s and he had always been fascinated by the way the brain worked &mdash; an organ so important that it not only controls our functions but who we are as people.

That morning our lives were fairly standard and perhaps a little boring and we were starting to talk a bit about when we’d buy a home or have children. But by that night, nothing about our future was certain, or as I later learned, possible. It had been a few weeks of headaches and memory loss for Jon when we went to the emergency room at Mount Sinai in New York.

We assumed we were both just being overly anxious, but better safe than sorry. A test that night showed that Jon had a large mass in his brain — it was big, it was deep, and it didn’t look good. A biopsy later confirmed that it was glioblastoma, a highly aggressive and lethal brain cancer. I didn’t realize at first just what we were facing, but Jon did. As a neurologist, he had seen patients receive this grim diagnosis, and after our first appointment with the neuro-oncologist, Jon was unfortunately wise enough to tell me, “I had forever and now I don’t.”

Those words broke my heart then and they still shatter me now. They seem impossibly cynical but they’re true, because people diagnosed with glioblastoma face a harsh reality that treatment options are limited and weak, and that a cure isn’t quite in sight yet. When Senator John McCain passed from glioblastoma back in 2018, news media rushed to talk about the ways in which we were getting closer to a cure, to put a positive spin on it. As humans, we’re always desperately looking for an upside to any situation. After Jon’s first resection surgery to debulk the tumor, friends would ask me if they got it all, if he was in remission, if it was over now. They didn’t, he wasn’t, it wasn’t.

Jon was never quite the same and he never returned to work — his lifelong passion &mdash; or really got to be his full, independent self again. Glioblastoma does not have a “feel-good” component, and there’s very little hope for a life after it: Only 6% of patients live past the five-year mark, and the average patient only lives 12 to 18 months. Despite the work of scientists and doctors alike, patients with glioblastoma face the same odds they did more than two decades ago, with virtually the same treatment options given in the 1990s. That’s right, there’s been no tangible progress since “

If patients are lucky, they are candidates for a life-threatening and possibly personality and capability altering surgery that can remove some of the tumor. We celebrated the chance to have a surgery in which there was a 50% chance Jon would lose his peripheral vision, a 5% chance he would never intelligibly speak again, and a small chance he wouldn’t make it out at all. After this, the diagnosed are treated to a cocktail of daily chemo and radiation, which works only to try and extend the life of the patient and is only effective for a small fraction of them.

Some will elect to try a tumor-treating field device that they must wear on their back that sends electrical pulses to pads placed on the patient’s scalp. This is as far as we’ve come with standard treatment options. Jon, even with aphasia after his surgery, knew that our best shot was a clinical trial — an experimental study where he would try a new drug or procedure and we’d pray that this was the cure and that Jon was patient one. If Jon had been diagnosed in 1999, this would have been our same, best option. For over two decades, each patient with glioblastoma has hoped and prayed to be that patient zero.

For over two decades thousands of men, women and children have confronted the devastating fact that they were not patient zero. They weren’t close. Jon passed away in April, 26 months after diagnosis. I lost the greatest person I’ve ever known, but the world lost a compassionate, kind and driven doctor who would have made a huge difference in the lives of thousands of people suffering from neurological disorders. I’m fully aware of how ironic it is that a brain doctor got brain cancer, but I know that even in death, Jon is moving the field forward.

Someday, someone will tell this story, but their ending will be happier than ours. I look forward to that day with everything in my being, but we have a long way to go and a lot of work to do to get there. This might sound flippant, but we would never put up with using a computer or phone from the 1990s, so we clearly can’t be complacent about treating people with the same methods we used the year Napster first launched.

With the world in flux right now, it’s easy to forget that there are other urgent problems, but there are, and this is one of them. Every moment our leaders and ourselves aren’t pouring everything we have into research and treatment, another person is gone; another family feels helpless and hopeless. In a world where our leaders are doubting the importance of scientific advancement, we need to be louder, stronger, and more aggressive. We can’t lose more people like Jon; the world just can’t afford it.

Wednesday marks the second annual Glioblastoma Awareness (GBM) Day in the United States. Erica Finamore is participating in the National Brain Tumor Society's virtual GBM Day commemoration.

In honor of the second annual Glioblastoma Awareness Day in the United States, Erica Finamore shares her story of the journey and untimely passing of her husband Jon Marc. But how that passing has still given to the research of brain cancer.
 

Author | Erica Finamore

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