Long Way From Home

So, here we are, the day of my admission. As you can probably imagine, I’m feeling a wide range of emotions. To name a few: relief, fear, gratitude, and hope. All pretty valid, I’d say.

Relief, because I’ve known since January that my future involves a stem cell transplant, and that day has finally come, with me still in good health. Fear, because no one can promise this will turn out the way we want it to. Gratitude for my family, my care team, my health up to this point, and for my life, even with everything going on. I wouldn’t want to be anyone else. And finally, hope. Hope that this goes even better than I could possibly imagine.

This past weekend, I was able to spend a lot of time with my family. At twenty-four, I’m incredibly lucky to still have all of my grandparents. Both sets live in the town where I grew up, so they’ve always been there for all the big and small moments of my brother and I growing up. Every soccer game, every birthday, every graduation. I wish everyone got to experience what that was like.

Unfortunately, they won’t be able to be around for this one. Because of my weakened immune system and the strain treatment will put on my body, I likely won’t be able to see anyone outside of my immediate family for quite a while. That hurts. A lot.

I’ve spent time away before, whether for college or vacations, but never for anything like this, and never for as long as I’ll likely need to be this time. One of my fears, which I think is completely rational, is that I won’t be around if something happens. Maybe that’s too much to share on the internet, but so be it. It’s how I feel, and it’s a real concern as I head into this.

I know I need to focus on what’s directly ahead of me on my own path, but that’s easier said than done. My family will be worrying about me, but I’ll be worrying about them too. I suppose that’s just how it goes. I will say, though, I’m thankful I won’t be the one who has to explain to my grandparents how to use FaceTime. That’s going to be a nightmare.

In a conversation I had with one of my grandfathers this past weekend, we ended up talking about what it’s like to grow up with siblings. He was the second of four, and he has some wild stories about life with his three brothers. The phrase “it was a different time” feels like it was made for the kinds of stories he tells.

After finishing one about his younger brother Jerry, he asked me what it was like growing up with my brother, Jacob. Part of the reason he asked, I think, is because it’s pretty clear how close we are now. Jacob is without a doubt my best friend. Growing up, being two years younger, I followed in his footsteps in everything he did.

Soccer was our sport of choice, and I had the benefit of playing with my brother and his older friends often. That pushed me in ways I wouldn’t have experienced if I’d only played with kids my own age. I picked up a feel for the game more quickly, and it helped me excel in my age group.

Of course, it wasn’t just soccer where I benefited from having an older brother. It was in every part of my life. I got to watch him take the big leaps first, learn from what he did, and carry that with me when it was my turn to do the same. 

I look up to my brother more than I could ever put into words, and much of my life so far has been spent trying to be half as good as he is. He is my role model without a doubt. 

I’m telling you all of this because it wasn’t until I said it out loud to my grandfather that I was able to start processing what I actually said. It was something like, “This feels like the first big moment in my life where I can’t look to my brother and ask him, how did you get through this part?”

I can extend that out further as well. My family has faced health scares before, one of which I talked about in my last post, but this is uncharted territory in a lot of ways. That scares me. I know I have many reasons to feel hopeful heading into this, but the fear will still be there with me every step of the way over the next few weeks and beyond.

Something that has helped temper that fear has been its opposite: humor. Remembering to laugh, even with everything going on. That’s a kind of medicine too. My family has a slightly dry, occasionally dark sense of humor, which you may have picked up on by now. At the very least, we make each other laugh, and I know I’ll be counting on that more than ever during this.

I had meant to keep this post on the shorter side, but it turns out I had a little more to say than I expected. That’s probably a result of all the conversations I’ve had and the thoughts I’ve been sitting with leading up to this big day. This is a heavy thing to walk into, and I don’t think anyone going through something similar would say otherwise.

Luckily, I have the best care team and support network around me to help lighten that load.

Before I say goodbye, I want to quickly reiterate what the loose plan will be moving forward. Starting next week, I’ll begin posting “Field Notes,” a recap of the previous Monday through Sunday. The first one will cover just the first three days: my admission date, Friday, August 8th, through Sunday, August 11th. After that, each entry will span a full week. Hope that makes sense.

As you can imagine, this will depend entirely on how I’m feeling. Once the chemo and immunosuppression really kick in, I’ll likely be in the trenches. If there are delays, please bear with me, as my health and recovery has to be the top priority throughout all this.

With that being said, as my grandfather so delicately put it during our last conversation: “I am off to see the wizard.”

Talk Soon,

– Ethan