National Parks and Recreation

I’m not going to lie, I’ve been putting this post off for a very long time. I started the drafts for the two parks we visited last Christmas awhile ago. I also have a draft where I was going to share some wedding photos. (I got married, by the way.) And I considered just posting one of those and pretending nothing even happened. I also considered never posting again, honestly. But I’m currently on a flight on our way to our next national park, so it’s decision time. Because what I’ve avoided saying is that right now there’s an empty seat next to my husband where my mom should be sitting as she joins us on yet another adventure across the country. But that seat is empty because my mom’s leukemia came back in April, and this time she didn’t beat it.

Sometimes life really sucks.

Anytime I have big, overwhelming feelings, it usually helps to write about them. But after your mom dies, you tend to feel like never doing anything ever again, at least in my experience. However, if I’ve learned anything over the last few months of talking to my mom’s closest friends, family and colleagues, it’s that she wanted me to keep writing. So, here I am. Writing. On a plane. On one of several trips I was supposed to take with her this year. To one of several national parks I will now never get to bring her (in person or on FaceTime). And I’m just going to have to steel myself for the inevitable heartbreak when I next login to her email to find something and see the alert pop up that there’s a new blog post to read. To be reminded that my biggest fan and staunchest supporter is never going to read another word I write.

Sometimes life kicks you when you’re down.

I went home to my mom’s house in early April to see the total solar eclipse; she lived in the path of totality. One night, after half a glass of wine (if you knew my mother, you know that’s enough), she admitted that she’d been talking to a friend about her journey and everything she’d been through and had decided that she wanted me to help her write a memoir about it. This was the greatest thing she could have ever said to me and I wholeheartedly agreed to do exactly that. Eclipse Day rolled around and with it came the clouds that rolled in at the exact wrong moment. We didn’t see totality. We did see complete darkness for 3 minutes which was still really cool, but we didn’t get that moment. This seems especially cruel now. I went back to Boston the following day and then, four days after asking me to help her write her story, my mom found out she had relapsed for a third time. Two months later she was dead.

Sometimes life is too short.

Don’t worry, I’m still going to write that story for her. And I’m going to give it the time, care, and weight that it deserves. But if you’ll allow me, I’d like to tell you a little about my mom and her nine-year battle with leukemia. After all, she is the reason I love traveling and exploring the country. None of this would even be here without her. So indulge me this. And then I promise it will be back to the pretty pictures and silly anecdotes you’re used to, exactly the way she’d want it.

My mom was born in Boston in 1959 at a hospital right down the street from where I live now. Anytime we’d drive by it, she’d always say “where’s the plaque announcing my birth?” (They should really get on that.) Her parents and siblings moved to Syracuse when she was just 5 months old and she would spend the rest of her life in Upstate New York. She went to Buffalo State to study criminal justice and became a diehard Buffalo Bills fan. She worked for customs right out of college, fearlessly working the border at Niagara Falls in a male-dominated field (that is, until Ronald Reagan ruined her life. But you’ll just have to read the memoir to hear that story.) Eventually, she met my father and moved up to Lewis County, the land of cows, corn, and lake effect snow, and began her career as a probation officer.

She worked for 28 years in the Lewis County Probation Department and dedicated so much of her life, time, and heart to her clients. She was forced to retire in 2018 because of her illness, but she never stopped caring about her people. I can’t count the number of times both pre- and post-retirement that we would run into her clients out and about and she would introduce me and brag about all the things they had accomplished since she last saw them. She was always the first person to celebrate their successes, as well as mourn their setbacks. If you found yourself on the other side of Ellyn Losada’s desk, she had your back. She never judged or gave up on anyone, because she understood a fundamental truth:

Sometimes life just gets away from you.

My mom raised me as a single mom. It was just her and I since I was 7 years old. And we did everything together. We traveled all the time to see family. We played with our dogs. We watched television together every night, football every Sunday (with her special salsa dip). We were inseparable. And then, as most teenagers do, I started to act out, and our relationship suffered because of it. I’ll spare the gory details, but I was not winning any children of the year awards at that time. And then I chose the college on my list that was furthest away from home and off I went to Boston. And then I stopped coming home all together, spending summers in the city working odd jobs and playing in the band for orientations. I stopped going home for three-day weekends (though, if you’ve ever found yourself at the Albany bus station in the middle of the night, maybe you understand). And little by little, the inseparable duo became just two people who saw each other a few times a year. I had left the nest. Which is a very normal thing to happen in any mother/daughter relationship once said daughter reaches her 20s, but I don’t think it was ever supposed to happen to us.

Sometimes life doesn’t go according to plan.

It was a warm summer night in August of 2015, one year post college graduation. I was walking across the bridge over the MassPike into Lower Allston when I got the “call me” text. My heart sunk. Last time I’d gotten this text from my mother it was to tell me that my grandpa had cancer. I dialed her number.

All summer, my mom had been dealing with odd symptoms. She wasn’t feeling great and kept having these weird episodes, but the doctors couldn’t figure out what it was. Every test they ran, ruled out another theory, but they couldn’t get to the bottom of it. Until finally, FINALLY, they ran a full blood panel.

“I have leukemia. What the fuck?” I froze on that bridge. How do you reply when your mom tells you that? I honestly have little memory of how the rest of the conversation went. I remember asking if I should come home. No, she was going to try to get to Boston. “They have the best cancer doctors in the world there.” That was a relief. I don’t remember how the conversation ended. How do you end that conversation? I walked home in a daze and dragged James into our bedroom to break the news. He went numb. His father had been dealing with cancer his entire life. This wasn’t unfamiliar territory. We both just immediately knew that our lives were about to change forever and we were going to have to do whatever we needed to do to get her through this and be there for each other in the process.

Now, I don’t mean to imply that my mom got cancer because I abandoned her and the universe wanted us to spend more time together, but I’m not not saying that. I spoke about this in my eulogy, but I have been desperately searching for meaning in all this. Some kind of reason that something so awful could happen to such a wonderful person again and again. And I’ve settled on this. In the summer of 2015, we did not have much of a relationship. There’s a reason I can’t recall her specific symptoms from that summer; I was in my own selfish world. But from the moment she arrived in Boston and we got her settled on pod 7C at Brigham & Women’s Hospital, the dynamic duo was back together. And we would spend the next nine years in the halls of that very hospital getting to know each other even more, becoming oncology experts, finding all the best snacks on the restricted menu, laughing, crying, and popping wheelchair wheelies.

Sometimes life makes the decisions for you.

Looking back on it, that first time seemed easy. (Easy for me to say, right?) And that’s probably because it was so long ago now and she didn’t really have any of the major complications we would become so accustomed to in subsequent relapses. But mostly, it’s probably because my mother never once complained or accepted pity. She took every single thing that came her way in an effortless stride. But the type of chemotherapy needed to treat AML is no joke. For those who don’t know, AML stands for acute myeloid leukemia. Here’s a tip: if you ever find yourself diagnosed with a serious illness, you reeeeally don’t want the word “acute” to appear in it. The chance of surviving five years with AML for a person over 50 years old is 25%. (And it was even worse back in 2015). We got 9 years. And I’m trying so hard to be grateful for that.

And I am. Endlessly grateful for the oncology doctors, nurses, PCAs, and entire staff at the Brigham and Dana Farber. Mom was right. They truly are the best in the world. They never gave up on my mom. And they gave her every opportunity to fight for those precious nine years. And fight she did. From that very first stem cell transplant and subsequent quarantine. To her first relapse, the one with ALL of the complications. To the infections to the pneumonia to the second relapse in the middle of a deadly pandemic. They kept finding solutions for her on the fly, developing treatment plans as more research and technology was coming to light in real time. And she just kept fighting while remaining the amazing, positive, funny woman she always was.

Mom never lost her sense of humor. She joked about getting a punch card for “the great ICU tour of Upstate New York” any time a new complication had her rushed to a new hospital. She would dramatically exclaim, “don’t they know who I am?!” any time a doctor left the room after delivering bad news. And I can’t count the number of times we’d rush to the hospital after hearing they had to call rapid response because her blood pressure crashed overnight and we’d speed into the room, prepared for the worst, just to find her sitting up in her chair, eating her fruit cup, telling tales about how doctors were “repelling from the ceiling and bursting through the windows”. You’d have no idea she almost died a few hours prior. I honestly don’t know if it’s that nothing phased her or if she truly just let it all roll off her back. Every now and then, there would be an especially bad day when she would break down and tell me that she was the most uncomfortable she’d ever been or that the pain was almost unbearable. But the next minute a nurse or PCA would walk in the room and she would immediately start cracking jokes with them and asking about their kids and their weekend plans. She was extraordinary.

I don’t remember the doctors ever telling us that if you relapse once after a stem cell transplant, you probably always will. It’s possible they told mom and she just never passed that info along, but I think it was probably good that we never had that piece of information hanging over us the entire time. And I truly hope she didn’t either. Because despite this, Dr. Stone, Dr. Soiffer, and the entire oncology team at Dana Farber still fought with her every step of the way through every setback. They weren’t going to quit until she was ready. And after beating leukemia for the third(!) time, we got four straight years of remission. Four years of going to concerts, cheering at Bills games, and visiting family. And perhaps most importantly (though I may be biased), she walked me down the aisle and danced with me at my wedding.

Sometimes life is really beautiful.

While it’s true that the oncology team at Dana Farber helped her fight for nine years, they also always promised her they would be honest and tell her when it was okay to give up the fight. And that time came 88 days ago. Cancer is a hell of a thing. So many patients don’t end up dying from the cancer itself. It’s the chemo that kills you. It’s the radiation. The infections. The complications. The millions of little things you have to fight and endure every day just to keep having a chance at fighting off the cancer, too. Sometimes you don’t even know what it actually was in the end.

Sometimes life is incredibly unfair.

My mom went peacefully. Just after 5 in the morning. She didn’t feel any pain and she knew she was surrounded by her family. We spent the night watching her favorite movies and listening to her favorite music and entertaining the many nurses and staff who swung by the ICU to bid farewell to one of the most magical people to ever grace the halls of that hospital. And now she doesn’t have to fight anymore. She doesn’t have to endure any more chemo. She doesn’t have to watch the Bills lose to the Chiefs in the AFC Championship game, yet again. (Sorry mom, last one.)

I’m sure it’s some kind of Stockholm Syndrome or maybe it’s just grief, but I really miss those long days in the hospital. They were truly the worst of times, but with a mom like mine it was pretty easy to make the most of them. I miss our mini dance parties to the hold music on the cafeteria phone. I miss scaring the nurses by screaming at the little TVs while we watched Bills games or Wheel of Fortune. I miss her drug-induced ramblings and the oyster crackers she would horde for me and the moment after a group of doctors from god knows what department would stream out of the room without providing any answers and she would look at me and mouth “what the BLEEP?” I miss my mom.

Immediately after she passed, I dreamt every single night that I was still sitting by her ICU bed, holding her hand, just hanging out. I don’t have those dreams anymore and I miss them so much. I would give anything to fall asleep every night and get to hold her hand until morning. But I guess eventually we all have to start slowly moving on, because…

Sometimes life ends.

One day we’ll all take our last trip. Visit our last national park. Take our last picture. Hold our daughter’s hand for the final time. But every time life ends, life also goes on. So we go on. We take the flight to California with the empty seat. We try to build more happy memories. We celebrate all the big moments still to come. But we also get to bring our sadness with us everywhere we go.

Okay, mom. I’ll stop being sappy and get back to posting about our silly little trips and misadventures. And I know I’ll be seeing you in the birds soaring over every mountain peak, in the rainbows formed in every waterfall, and in the wildflowers peeking out of the rocks you’d be scolding me for climbing. Come by and hold my hand anytime you’d like, I’m only a dream away. Bye bye love you more.

Thank you for reading.