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.

Erica Finamore

It’s been almost a year since I lost you, and visiting your grave somehow still makes me feel dumbstruck: How could that really be you there? Every time I look at your name etched in the concrete, it makes me feel like I’m in “A Christmas Carol” — and that this is all a bad dream I’ll wake up from.

There are dozens of little things every day that I wish I could share with you. A lot of them are totally unimportant, like did you know that Russell Stover is now making full-sized hazelnut chocolates? Those were always our favorite in those Valentine’s Day boxes, and you and I could never figure out why they hadn’t marketed them in a better way.

The other day I was walking around Carl Schurz Park, the park near our apartment that we used to visit almost daily. I’ve always loved reading those bench dedication plaques the parks have. Over the years, I’ve read hundreds of them and taken photos of other people’s quotes and memories. On this day I happened to pass a bench I hadn’t read before. On it, it said, “How we wish you could have seen it all.”

And more than any other aching, unending emotion I’ve felt this year, that’s what hurts me most deeply about losing you. On big dates when I’m aware you should be here and on boring days when I’m just watching TV with our dog, Leslie, I wish.

In this weird year I made new, close friends, and as I sit with them making new memories, I wish. Last week I spent time with your nephew, Max, who you never met. He has these incredible blue eyes that remind me so much of yours. I’ve watched him grow into this happy, joyous baby, and I wish. Since you’ve passed, people have received awards in your name at both New York University and the University of Delaware, and I wish. I wish you could have met them all.

Joe Biden got elected president and I bought my apartment, and I wish. Your brother wrapped up his second year of law school and mine made it through another busy season with his wits about him, and I wish. I wish you could have celebrated it all.

You would have been in your first year post fellowship, working as a real doctor, and I wish. We would have celebrated our 11th dating and third wedding anniversaries, plus our 32nd birthdays together, and I wish. Our “on deck” trip was Japan, and I’m not sure we would have gone during COVID-19, but I still wish. I wish you could have done it all.

I remember your big days by celebrating in a way I think you’d love. I try to keep little things in perspective the way you always did. I go after the things I want now because your fierce belief in me made me believe that I could, and I wish.

You’ll forever be a part of me, in every smile and every heartbeat, but I wish you could be here in person, too. And as I look back on all the things that have happened without you and as I think about everything yet to come that you’ll miss, how I wish you could have seen it.

For more news on cancer updates, research and education, don’t forget to 

Articles

A wife pens a letter to her husband on the first anniversary of his death from cancer about all the things he’s missed — from the big dates to the boring days, such as just watching TV with their dog.

How I Wish You Could Have Seen It All

Jon and I were not a love story, and you might think that having to announce that makes it more of a love story. But for me, it does not. In my super-biased opinion, a classic love story is girl meets boy, boy goes off to war, boy and girl write letters to each other which somehow get delivered to the right bunker, boy comes home from war without PTSD and with all his original appendages, boy marries girl, they live into their 90’s and are eulogized by one of their five adorable great grandchildren.

In my story, my 28-year old husband and college sweetheart, Jon Marc, was diagnosed with terminal brain cancer just four months after our wedding. Jon was a neurologist at the time, and yes, we also found it ironic that a brain doctor got brain cancer. At 28, everything I assumed my life would become disappeared instantly and 26 months later, so did Jon.

When people read about Jon and I, “the ultimate love story” is the phrase they’ll often turn to. In fact, we’ve had a couple of articles published about us that were titled “Love Story.” I can understand why — and it’s a lovely, positive thing to think about us. I’m glad people saw our relationship and thought we were that kind of couple and didn’t instead coin us “the ultimate shitshow.”

People would call us a love story and use these profound terms that made us seem like we were bigger than we were, super-human almost. As a society, we often do this with cancer or illness; we use that language to separate ourselves from these harrowing tales. People are “heroes” who fight “battles” and we talk about our “journey” through the world of terminal illness. But real illness doesn’t feel that way.

Yes, it’s dramatic and emotional and surreal but it’s also much smaller … even monotonous sometimes. Between those moments of shock are millions of little average ones; frustration when your doctor is running late and you’re both hangry or elation when you end a tough week and discover that a new season of “British Baking Show” has been added to Netflix. And those moments are the ones I play in my head now, not the big ones. I dream about those average days where we just felt like us; like anyone else.

Phrases like “love story,” and “lost his battle” don’t compliment the ill as much as they distance the writer and reader from thinking and feeling like something like that could ever happen to them. People in a “love story” are the others — their misfortune or fortune is just crazy, so we write it off as random and foreign. Realistically, people die of cancer and thousands of other things, seemingly randomly, every day — leaving their spouses, partners, girlfriends, boyfriends and non-labeled people before their time is due.

And no matter how old you are, you will always feel robbed of time with a loved one — that’s just the way it is. When people see our story as something exceptional, they discount that as a society we have a real problem that needs to be solved and is affecting very normal people. Brain cancer is real and it’s random and it actually could happen to anyone — I want people to empathize and then take action, not tear up at a Romeo and Juliet-type horror and then move forward with their day.

As humans, we are always in denial about a multitude of things. That’s the way it should be and has to be, because how else would we get through the day? We’d be so paralyzed by fear that we wouldn’t really live at all. But somewhere between believing in love stories and believing everything is scary, there’s a place for people to do good: To recognize a heartbreak, learn more about an issue and feel deeply for the very real people who were put through such an unlucky bit of fate.

When people read about us, I want them to think wow those people were able to survive through a horrible time in the best way they could. We weren’t the ultimate love story — we were two people who were in love and loved each other deeply, but we weren’t superhuman, we were just lucky enough to find each other. That’s it, no magical myth.

Instead of using the cliché of calling the story of her and her husband’s relationship a classic “love story”, this caregiver who lost her husband to glioblastoma after just 26 months reflects on why she prefers to focus on the fact that they weren’t superhuman – they were just lucky enough to find each other.

Not a Love Story, But a Story About Love

In the now famous commencement speech made by Steve Jobs back in 2005 he said “Almost everything— all external expectations, all pride, all fear of embarrassment or failure- these things just fall away in the face of death, leaving only what is truly important.” I remember listening to that speech and printing the words and worshipping them. I wanted that kind of bravery, but I didn’t have it. I followed the motions; I cared a great deal what people thought of me (I still do) and I played everything safe. I planned and prepared and gunned it through every piece of my life with laser-like focus.

When I was 28, I had my dream job and dream husband and everything in my life had gone according to plan. I defined myself by how busy I was and how together I was and how hard I worked. I had every reason to pause and enjoy it all, but I didn’t, because I assumed those things would always be there—that they were earned and inevitable.

My husband, Jon, was diagnosed with stage four brain cancer and none of my obsessive planning, rule-following or caution made a difference. That rocked me to my core, it shattered my world and it made me better. I feel devastatingly unlucky to have lost him so soon, and so overwhelmingly lucky to be alive.

Once you see how quickly life can be taken away, all of the little things we don’t do and don’t try feel foolish. There’s pain in being embarrassed but there’s a much greater pain in regret. Watching Jon fight so hard to live and enjoy every minute of his life made me want to fight harder too- to live the bravest life possible in his honor.

We all have a certain amount of time on this earth— and whether you spend that time doing the things you're passionate about, taking a chance on people you think might make you happy or just dreaming about doing those things. It all ends at some point. I wish I could go back and tell myself to take more chances, but I can’t, so I’ll tell you now.

I’m not a big sharer, but I keep talking about Jon and my story here. I’m not someone who overly emotes but I can muster up the courage now to tell people how I feel. I try to remember, every day, that very few things are really worth fearing.

In 2020, every one of us has been tried, but as we head into this new year, it’s important to remember that there is an abundance of good waiting for us too— if we’re brave enough to make it happen.

Life is fleeting, and cancer survivors and caregivers understand that perhaps better than most. 

We Should All Be Fighting For Our Best Possible Lives

Most people in the cancer community know about 

 and his son Beau Biden. Beau was diagnosed with glioblastoma and lived over two years with the disease, working through most of it as the Attorney General of the state of Delaware. Regardless of your views on politics, there’s no doubting that having anyone in a high office with a very personal connection to cancer is helpful—both for awareness and advancement.

 at age 28, it was incredibly difficult to find other people near that age range to talk to about it. People didn’t want to alarm us, but they also didn’t want to give us hope when it wasn’t realistic. I wanted to get people’s real experiences and real stories, but what I kept getting were watered down experiences that remained mostly clinical rather than emotional. Glioblastoma also affects everyone so differently that I rarely relate with one person’s “journey” on a deeper level. The losses each person experiences are so different, and they come at such vastly different speeds.

In a time where I was looking for anyone with any kind of experience, I found “

Promise Me Dad: A Year of Hope, Hardship, and Purpose

,” Joe Biden’s book about his son’s illness, his decision not to run for President in 2016, and his time as Vice-president. I read it because a variety of people told me not to; that it would hit too close to home. I knew from that endorsement that it was exactly what I needed to read right then. Jon Marc was only four months into his diagnosis, and I knew parts of it would be hard to read because Beau inevitably didn’t survive this, but I’m a planner and I just wanted to see if I could get any idea of what I was in for.

I learned a lot about Beau’s particular tumor and his experience. Like Jon Marc, Beau had aphasia or “tip of the tongue” syndrome. You know what word you’re looking for, but you can’t get it out and it’s frustrating when this happens to people just occasionally, but when it’s all the time it’s a social nightmare. Beau also found himself going through options A, B, C and D in his treatment, and at the time, Jon and I had had a rough few month of letdowns and changes of treatment plans. There’s something about knowing that someone else out there who was also smart and driven and actually, from Wilmington, DE, that had gone through what we were going through.

There are a few quotes from the book that I highlighted at the time, and as I read them now, they strike me just as powerfully, albeit differently, but this one in particular seems to click more now than ever.

“When one of your loved ones goes out of your life, you think what he might have done with a few more years, and you wonder what you are going to do with the rest of yours. Then one day, because there is a world to be lived in, you find yourself part of it, trying to accomplish something—something he did not have time enough to do. And perhaps that is the reason for it all,” from Joe Sr., President-Elect Biden’s father.

When Jon passed this last April, I felt sad and cheated and angry, but then I also knew I had to channel that into gratitude somehow. Jon didn’t get more time, but I do—I live every day now knowing I have to make it count in some way. It’s a lot of pressure, but more often than not it pushes me to be a better version of myself.

It pushes me to act; to be kinder, to take joy in small things and to tell Jon’s story and work toward a cure for glioblastoma. Even in death, Jon drives me to be a better person—there’s something comforting about that.

For more news on cancer updates, research and education, don’t forget to

President-elect has a well known personal relationship with cancer as his son Beau Biden was diagnosed with glioblastoma and passed from this disease. This high-profile journey and story had an impact on my own journey with cancer.

Erica Finamore

How I Wish You Could Have Seen It All

Not a Love Story, But a Story About Love

We Should All Be Fighting For Our Best Possible Lives

How Joe Biden’s Experience With Cancer Influenced My Journey

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