Long Way From Home

Welcome back. Today, I want to write a bit of an open-ended letter to the city of Boston and share the love that I have for the city with you all. As someone who has spent their whole life more or less living in New England, Boston has always been one of the more special places for my family and I.

We have countless memories there, and I believe that our personal ties to the city, the world-class care available at Dana-Farber, and my post-treatment goals all make it the right place for me to go through this process.

This post might be a bit all over the place, but that feels right given where my life is at the moment as I get ready to be admitted for transplant later this week. Hope you enjoy.

Disclaimer: This post is a personal reflection on why Boston feels like the right fit for my family and I during this time. If you’re considering where to receive treatment, your own needs and preferences will always matter more than anything I share here.

We’re stopping for pizza, right?  

Up until late 2023, my grandparents owned a condo up in Wells, Maine. When I was growing up, my family would pack my brother and I up, and we’d often make two or three trips a year to spend time there.

Going to Wells was never a busy kind of vacation for us. You know the type, where every day is packed with activities and sightseeing, and even though it’s fun, you come home more tired than when you left. Definitely not our goal. For us, it was always about relaxing. Getting away for a few days to do a whole lot of nothing.

Our big plans usually involved walking the beach, grabbing ice cream, and taking as many naps as possible. And of course, waiting in line at Congdon’s for donuts or breakfast treats almost every day. If you’ve been to Wells, you know the struggle.

We loved those trips. They were a constant getaway that we could all count on each year, a set time to decompress from whatever was going on and create lasting memories with the people we care about most. Growing up, I don’t think I fully realized just how special it was to have a place like that.

Because we lived in Connecticut, the drive to Wells always took around three hours, sometimes longer during the summer months. I’m not sure exactly when the tradition started, but eventually stopping in Boston for pizza became not just normal, but a requirement. A ritual of sorts, either a way to close out a relaxing week away or a good omen for the one ahead. Sometimes both.

My parents had tasted greatness one day at Pizzeria Regina in Boston’s North End and decided it was their parental duty to share the glory of its thin, saucy, Canadian bacon-topped pizza with their children. I’m grateful for many things my parents have done, but sharing this knowledge with us is near the top of that list.

To this day, I can’t remember a single trip to Maine where we didn’t stop at least once in Boston, park at Sargent’s Wharf, and walk the windy mile or so through the North End to get pizza. For our family, the path from the wharf to Pizzeria Regina is our Freedom Trail. We could all do it in our sleep if we needed to. 

Maybe that was a bit much, but the point is that little part of the city became very familiar to me throughout my childhood and beyond. Growing up in a small town, big cities always felt a bit overwhelming to navigate. The size and scale often overwhelmed my small-town brain fairly easily.

Over time though, the North End became a place of comfort for my family and I, a spot where we could pretend to be big-city locals for a day and consume an alarming amount of pizza.

It was, and still is, a place full of memories that we often find ourselves returning to. I’ve watched many places I love change over the years, and I think most people experience that to some extent. It’s just part of growing up. Your memories of a place often clash with the rapid changes occurring in those same places, often making you question your own version of what that place was like before.

Although that is an unfortunate reality for most places, I rest easier every night knowing that while I can’t count on much, I feel pretty confident that large parts of the North End, and Pizzeria Regina in particular, will never change.

Receiving a (Largely Virtual) Boston Education

Like many people graduating high school, I didn’t really know what my long-term goals were. What I did know was that I wanted new experiences, which led me to choosing a college down in Raleigh, North Carolina, far from everything I had known up to that point.

I remember being one of the few in my graduating class who chose to go far away for college. I was proud of that, and part of me still is.

I won’t bore you with all the details, but I didn’t end up loving my time in North Carolina. I felt disconnected from everything I knew back in New England, and not in the kind of way that led to growth. After my first year, I transferred to Lasell University in Newton, Massachusetts.

A big part of my decision was Lasell’s proximity to Boston. While I was down south, I found myself feeling nostalgic for a life I knew, and the first place that came to mind wasn’t anywhere in Connecticut where I grew up, but Boston. I figured being closer to home and near a city I love would solve most of my problems.

It didn’t. After a semester and a half at Lasell, we were sent home for “two weeks” at the start of the COVID-19 pandemic. I was struggling at Lasell much like I was down south, so I initially welcomed the chance for a bit of a prolonged break. A chance to go home and re-set for a week or two.

Little did I know I wouldn’t set foot on campus again until the fall of 2021, and even when I did return, it was in a limited capacity. I was driving up twice a week from Connecticut for classes while living at home and working almost full-time. At the end of that semester, I graduated with my bachelor’s degree after three and a half years of college, half of which ended up occurring online.

Safe to say, my college experience was a bit underwhelming. One of the highlights of my time at Lasell, though, was being close to the city. Before the pandemic shut everything down, I was able to take advantage of my school’s proximity to Riverside station, which led right into the city. 

​​I went into the city to take photos, catch a hockey game or two, and enjoy a few solo pizza runs. It didn’t solve all my problems, but being in a familiar place like Boston helped me during a time when I was trying, and struggling, to figure things out. 

Running Towards, Not Away

As you’ve probably gathered by now, running is my main hobby. I’d even go so far as to say I need to run in order to feel like a sane human being. It’s played a huge role in both my mental and physical health over the past few years, and I couldn’t be more grateful for everything it has given me.

I’ve come to terms, as best I can, with the fact that my running will need to be put on hold for a while during treatment. There’s no way around that. That said, as I mentioned in this post, I’m hoping to have some exercise options available while I’m in the hospital to help break up the drudgery of spending a whole month in one room.

Part of what’s helped me come to terms not just with putting running on hold, but with undergoing this intense treatment, is focusing on what I plan to do about it afterwards.

Throughout this experience so far, I’ve learned that I’m not someone who can go through something like this without searching for meaning in it. I have deep respect for anyone who can face something similar without needing it to mean anything, but that just isn’t me. I need this to mean something. To be more than just bad luck.

That’s part of the reason I’m even writing this in the first place. This blog is one way I’m trying to turn an overwhelmingly negative experience into something positive. Something that might help someone else.

As you can imagine, these thoughts started after I was diagnosed in January, after that “oh s**t” moment when I was told something was actually wrong and that I’d need treatment.

What was the first idea I had for how I might attach meaning to this experience one day? Doing what I already do. Doing what I already know. Running. While writing about my experience hadn’t crossed my mind until a month or two ago, running to fundraise for my treatment center after transplant had. It was damn near my first thought.

I hesitated about sharing this goal so early because how I’m able to use my body after transplant depends entirely on how the transplant actually goes. I have no idea how I’ll feel, how long it will take to regain some semblance of fitness, or even if I’ll be able to.

I can tell you one thing though: I’m motivated. The very thought of lacing up my running shoes again after this and working towards this goal excites me. It fires me up. I intend to use exercise as medicine during my recovery, and eventually as a way to turn this into something good. Something that reaches beyond just my own experience.

​​When I’m able to get back into the full swing of things, I plan to shift my focus towards training for the Boston Marathon as a member of the Dana-Farber Marathon Challenge (DFMC) team. There’s an application process for the team, of course, and no guarantee I’ll be selected, but I intend to make it happen, even if it means waiting.

If the team at Dana-Farber can get me through this treatment in one piece, I think fundraising and running the Boston Marathon for them is the very least I can do to thank them for their role in giving me a chance to live the life I always hoped I would live.

That’s all I’ll say about this goal for now, as there’s a long road between now and when it can become a reality. But it’s a road I intend to start down as soon as I’m able to.

Only Twenty-Six Miles? 

While I will soon add to my emotional ties to Boston, right now no one in our family has covered as much ground in the city (literally) or has as much reason to feel grateful there as my mom.

In March of 2009, when I was nine and my brother was eleven, our mom was diagnosed with stage 3 breast cancer. Earlier this year, she celebrated her sixteenth re-birthday. In other words, sixteen years since she was diagnosed. I may not have understood the gravity of the situation back then, but our mom had fought and kicked breast cancer’s ass. That much my nine year old self could wrap my head around.

Part of the reason I feel driven to make something positive out of my experience is because I watched my mom and a group of her friends do the exact same thing after her recovery. On seven separate occasions, four of which took place in Boston, my mom and “The Bolton Breast Buddies” raised tens of thousands of dollars for the Susan G. Komen Foundation during their three-day, sixty-mile walks.

Their total fundraising amount? $134,000 over seven walks. $108,000 of that raised during their four walks in Boston. Proud doesn’t even begin to cover it.

According to the Susan G. Komen website, “Since 2003, we’ve raised more than $915 million to save lives, support community programs, increase access to care, and make strides in breast cancer research, therapies, and treatments. But we still have miles to go.”

When I asked my mom recently what those walks meant to her, she said this: “They were joyful and hopeful and powerful. And gosh did that feel really good after all those treatments and surgeries. They made me feel alive. Truly alive. And they let me give back to the communities (the science one and the family/friends one) that got me through it all. Boston itself was unbelievably welcoming and supportive and when I drive or walk through the neighborhoods now that we passed through those years it brings me right back and I’m instantly grateful again. Grateful. That’s the word.”

From her experience, and from what I am coming to understand about situations like the one I currently find myself in, is that you can’t always control what will happen to you in your life. What you can control though, is what you do about it. How you play the hand that you are dealt. 

In Good Hands

When deciding where to undergo treatment earlier this year, Dana-Farber wasn’t initially the first place I considered. At that time, I was still learning everything I could about my condition and the stem cell transplant process.

My first official consultation outside my local network, set up with help from my care team in Hartford, was with the team at Memorial Sloan Kettering (MSK) in New York City. I touched on that appointment briefly in this post, but overall, it went well. We heard the term “cure,” and they emphasized how important it was that we caught this when we did. For the most part, it was all good news.

That being said, New York didn’t end up feeling as welcoming as I had hoped it would be. Obviously, the stress of that month played a big part in that feeling, but I distinctly remember leaving the appointment not feeling as good as I expected, even though we received all the good news that we could have hoped for beforehand.

I love New York, and I know the team at MSK is highly qualified. If I had ended up there, I’m confident they would have taken great care of me. In the months that followed, though, I learned I actually had options. The relationship Hartford Healthcare has with MSK, while strong, didn’t mean I couldn’t explore other possibilities if I wanted to.

That’s when Dana-Farber came onto my radar. We scheduled an initial appointment that followed roughly the same format as my MSK visit, but this time, I immediately felt that Dana-Farber was a better fit for me.

There was a certain warmth from the care team right from day one that’s hard for me to put into words. After that first appointment, I was surprised by how much initiative the entire Dana-Farber team took. They scheduled follow-up appointments, arranged further testing, and even contacted my insurance company early to get everything set up for transplant just in case we needed to move quickly.

I came into that first visit feeling stagnant, like we had hit a bit of a lull in planning that left me stressed and unsure of what came next. Dana-Farber completely flipped the script on that feeling. They got to work, which is exactly what you want from your team in a situation like this.

Once the decision to proceed with Dana-Farber was finalized, I was finally able to start planning what this would look like for my family and I, which I talked about at length in this post.

While I’ve done a lot of the planning and preparation myself, Dana-Farber has been a huge help throughout that process. Their support has allowed me to shift my focus to what I need to do to actually get through treatment, rather than getting too caught up in the miscellaneous details, which is something I’m especially grateful for.

Closing Thoughts

So, Boston, in a couple of days, I’ll be coming to visit for a little while. More than a little while, actually. I wish it were under better circumstances, a stop on the way to Maine, a ballgame at Fenway, or a relaxing afternoon on the Common. But not this time.

I’m asking you to welcome me like you always have. Treat me and my family kindly. Help me get through what will likely be some of the toughest months of my life.

Talk Soon,

– Ethan

Resources

Links directly referenced in this article: 

• https://congdons.com
• https://www.lasell.edu
• https://www.baa.org/races/boston-marathon
• https://danafarber.jimmyfund.org/site/TR?fr_id=2310&pg=entry
• https://www.komen.org
• https://www.the3day.org/site/SPageServer?pagename=homepage&_gl=1*10ymhnc*_gcl_au*OTI4NzU3MDMuMTc1NDMyMjc2MQ..*_ga*MTIwMTYwOTgzNy4xNzU0MzIyNzYy*_ga_HGS8BJYTKQ*czE3NTQzMjI3NjEkbzEkZzEkdDE3NTQzMjI3ODgkajMzJGwwJGgzODE1OTE2NTY.*_fplc*dUZoeWtzM21JZktZTDhGNnk0dHU1enpTNEFsRFdWTTRnSmxsSFJ6SFZHalBuOHRRUmN2OEtnSHdsQVljdzhOeG1jJTJCT3dmc2tzJTJCZ0NCbHZhR25tY3BWcTBVVUpwNkpvJTJGbkV5Wlk4ZVNaaEs4UFJTSlRROWpjUE5TQjhrUGVBJTNEJTNE
• https://www.dana-farber.org
• https://www.mskcc.org
• https://hartfordhealthcare.org/about-us/news-press/news-detail?articleId=56832