Finding a Cure, Sore Hips, and Everything in Between
This September I am walking the Boston Marathon Jimmy Fund Walk. This is my second year walking and I can honestly say it is one of the most rewarding things I have ever done. It's not about the exercise, the free swag, or the satisfying feeling of icy-hot on my soar muscles as I lay with my feet up the wall after the 26.2 miles. No, friends, it's about the people. The people who walk, the people they're walking for, and the people they're walking with.
My boyfriend Nick passed away in November of 2016 after a six-year battle with Rhabdomyosarcoma, a rare and aggressive form of cancer. Nick was diagnosed at fifteen and he passed when he was one month away from turning twenty-one. His whole young-adult life was dictated by this disease. It was a seemingly endless road with lots of time spent in Boston at The Jimmy Fund or Boston Children’s Hospital.
I met Nick when I was seventeen, on New Years Eve 2014 (2014/2015 NYE for clarity). Yes, he was introduced to me as “the one with cancer.” That wasn’t fair to him, but I couldn’t control that. What I could control is how I treated him: like a person. A nineteen-year-old person who was charismatic, funny, and frustratingly stubborn. I laughed at his jokes, got mad at him when he made me mad, teased him back, carried Tylenol around for him when I learned he couldn’t take my usual go-to, Advil, and through our accidental meeting, he became my best friend.
It’s weird to know that you’re gonna fall in love with somebody, but with Nick, I knew. I was hopelessly falling for this kid with one eyebrow that didn’t grow back and bright red sneakers to match his loud, red Jeep (that he built). But we hesitated when it came to pursuing a relationship. I could sense he was scared.
I knew that when the cancer came back in 2015 he was scared. I knew that when we started to have feelings for each other he was scared. I was scared. But right before we started dating, Nick had just started a couple experimental drugs at The Jimmy Fund. One that turned his shiny black hair bright white, and another that worked.
He would go up to Boston on Mondays for an infusion and feel crummy until about Wednesday, and then the rest of the week was his. He started working out with a personal trainer, telling me that it finally gave him control over one aspect of his life. After a few months with this miracle drug, on the summer solstice, he asked me to go out with him. This treatment gave him the greatest gift, that of feeling himself. He was courageous enough to take charge of his life again, strive for wellness, start a new relationship, (with me!!!) and live his brightest life. The scans kept coming back with good results, and we had several months of bliss. Until we didn’t. In early September of 2016, we got the news that he felt was coming, the drug had stopped working.
He officially told me one night when we were laying outside out under the stars. He told me he didn’t want me to to be scared for him. So for the first time, I told him I loved him.
As the cancer spread throughout October he revealed to me that he never wanted to bring me into this and that he would never forgive himself for it. I hope he did because he was the best thing to ever happen to me. I think about the first time we met, getting into basically a strangers car, and going to set off illegal fireworks on New Year's Eve. I think about how I felt when he had a whole speech prepared to ask me out in the middle of the woods on the longest day of the year. I think about driving with him in his Jeep, with the doors and the top off, the car too loud to hold a conversation. And I would look at him, in his uniform of a plain white t-shirt, cargo shorts, sunglasses, bright red sneakers, and a Jeep baseball cap to match, holding my hand and just think how in love with him I was.
I thought about how I would choose him in any lifetime, cancer or no cancer, white hair, black hair, both eyebrows or just the one. I would choose him again and again and again. Because I am the luckiest person to have experienced a love so true and so deep. It doesn't matter how long we had, it doesn’t matter how many nights we spent with him asleep on my lap after chemo, it doesn’t matter that his deteriorating eyesight meant he probably couldn’t see me very well towards the end— if at all— but he would FaceTime me anyway while I was at school, like a champ).
What mattered is that he is the greatest love I have ever had. And I am forever changed by that gift. I am honored that wherever life takes me, I will always have him in my heart which is stronger and more capable of love because of him.
My biggest wish is that I could’ve been there with him through it all. The diagnosis, the pain, the chemo, the feeding tube, the nausea, the scans, the good news, the first time eating regularly again (popcorn was his food of choice), the bad news, the radiation, the tough nights, the better mornings, all of it. But the truth is, I wasn’t. So I’m putting in the work now.
So that another young man can be treated with an experimental drug that allows him to follow his heart. So that he can go on adventures, say yes to new things, climb mountains, swim in the ocean, take risks, and fall in love. So that another young man can walk away cured.
There are a lot of stories like mine and like Nick’s. So until there is a cure, we have work to do. Let’s honor them. Let us run, let us walk, let us fight.
If you are interested in donating to this cause, please visit my fundraising page here: jimmyfundwalk.org/goto/kyrawells