For Fear of Good Things
Everything You Want is on the Other side of Fear. (Post BMT Day 9–14)
“Look at my hands,” I mumbled. “I just… I put weight on my hands. Did you notice that?”
I’m sitting on a multi-colored play mat in the middle of my bone marrow transplant room with one of my therapists doing yoga — by yoga I mean simple stretches & barely some standing.
Her face immediately brightened. “I noticed it yesterday while we were stretching. I was wondering if you’d picked up on it yet.”
I stared at her for a long time and then back at my fingers. For the last 4 years, through arthritis damage and inflammation, I’d had a complicated relationship with my hands — specifically my wrists. Years of unchecked Systemic Juvenile Arthritis had left my hands damaged; weak. My fingers were always a little swollen and uncomfortable. I’d gained most of my ability back, but it had never been the same. Whenever I worked out or put pressure on my wrists, I had to use fists instead. This was something I did naturally now. I’d learned to work with my wrists in everyday life and rarely thought much about it, even if sometimes I felt a little funny doing it.
Until the moment I’d put pressure on them without even thinking and realized that they didn’t hurt anymore. Now, when I looked down at my fingers and wrists, they were skinny. The little bump where the they’d been just a little swollen was gone completely. When I pressed my hands together and bent them, they moved more than 90 degrees easily. I stared down at my hands for a long time, running the tips of my fingers over the others. This wasn’t a minor feat. In fact, it meant that the bone marrow transplant was not only working, but likely had. My arthritis was gone.
But we’re only on day 10, I thought. This is wrong. It can’t be real.
The night before, my doctors had been stunned to find that my ANC (or measure of my total immune capacity) was at 500, which typically signals engraftment or production of new bone marrow. Engraftment that early is practically unheard of, and doctors had warned me to expect a backslide in my numbers the next day, but when I woke up that morning, my ANC had been 910. All of my other blood work had also jumped; doubled.
“You could be discharged this week,” my primary transplant doctor said that morning. “We’ve never had anybody do that before, but with those numbers… it’s more than likely.”
After that news, sitting on the play mat with my therapist, my brain momentarily split two ways. Part of me was suddenly hit with the realization that the transplant had worked. That someday I will be old. That I am actually healed and get to live out the rest of my life: a whole, beautiful wonderful life that I had given up any hope of when I was 18.
That I will make it to my 21st birthday in September.
The other half of my brain immediately shut down any possibility that this could be the case. Don’t jump to conclusions. Don’t tell yourself that this is real. Because when it’s not — you will be devastated again. Don’t say anything until you know. Until it’s done.
The second thought process is the one that I chose to go with. I am not ashamed of that. I am a young woman that has made lots of plans in life and had more of them demolished than actually come to fruition. I have been accepted to top colleges only to not be able to go, planned whole trips and had flares ruin them, and cancelled more plans than I can count. I’ve gone years in pain only to find out that my diagnosis was wrong. I went a year and a half of my life believing that my disease was under control, only to wake up one morning in November only find out that it had likely never gone away. I’ve been the worst case medical scenario more times than I can count.
Of course, in between all of those events, wonderful things happened. I graduated high school, got a full tuition scholarship to college, and got half of a college degree. I had multiple jobs and internships. I’ve been to five countries and travelled around the United States. I’ve made wonderful friends and lived the best of my life in the pockets of life that I’ve had. My life is wonderful and full. I am proud to live it every day and be who I am. But those two parts of my life are constantly fueled by the other and very extreme. I have always stuck to the mantra that “good things happen eventually,” because they always do, but I have gone weeks at a time with non-relenting unfortunate events.
As I said, this does not mean that I don’t believe that things will not change, but rather that I have been through lots of storms. Good things do not get rid of the trust issues I have surrounding good news. Storms are storms — they deserve recognition for what they do and the wreckage they leave behind. Just because it’s sunny the next day doesn’t mean that there aren’t still trees on the ground and people without homes. The trauma has already been done.
For the rest of the day, I began to notice little things about my body. Other people did as well. When my physical therapist took my measurements for range of motion, they were better than when I took them the first time upon being admitted. I was able to walk and do advanced stretching immediately.
The most exciting one (the one that I’d never even thought about) was my breathing. Ever since I started playing soccer in high school, I’d noticed that my breathing was slightly restricted. My breaths were always shallow, no matter what I did to calm myself down. We thought for short time that it was asthma, but as I got older we began to realize that it was likely the SJIA and my immune system. This is something that my pulmonology testing (lung & breathing) doctors have always confirmed, as well as my rheumatologist. It’s not something that I could have ever done anything about, but it’s impacted my life in a lot of ways. I’m already an anxious person and not being able to do true deep breathing has made things like mindfulness a challenge. Running has always been difficult, although I did it often because it’s something I’d always enjoyed. These were all things that I’d accepted.
On the day that I got to hug my partner for the first time, I was curled up in his arms experiencing my first hug in 30 days, when he stopped me.
“Your breathing.” He paused, “Take a deep breath.”
I scrunched my nose, confused. Carefully, I pressed myself to his chest and we both took a deep breath. I realized in that moment that our breathing matched for the first time; despite us being nearly the same size — it never had before.
This was the moment I knew the transplant had worked, but I refused to admit it to myself until a full two days later and I saw it on a page in front of me.
It was the day of the bell ringing ceremony — something the hospital does to commemorate graduating from the program. It’s a big deal and all your doctors and family members come to watch you ring a bell that they pull out into the hallway. It was easily one of the most touching moments of my life. To be surrounded by the people who had given me something I could never possibly describe. A future. While my bone marrow donor saved my life by giving me my cells, the people in that room made it happen and continue to do so every day.
After the ceremony, my mother, partner, and I were crowded around the bed watching intently as a nurse in a bright pink shirt was showing us how to take care of my port. This was the second-long teaching of the day, as the previous two hours had been spent learning how to take my blood sugar — a full how-to-be a temporary diabetic crash course. This was the last task we had to do before discharge and we were exhausted, but trying our best to listen to the nice man teach me how to be a nurse. As soon as he finished the explanation, the door to my hospital room opened and one of the nurse practitioners walked into the room. She was holding two pieces of paper. I think they’re my discharge paperwork and grin.
“Can you guess what these are?” She smiles.
I suddenly wonder why she’s asking and raise my eyebrows. “Uh, no?” I look at the papers again. We’d recently filed with an organization called SpecialWish, similar to MakeAWish, but that seemed too soon. All I really wanted was my discharge paperwork. That’s all it could be.
“It’s your chimerisms.” She said, “They’re back.”
My eyes got wide. The chimerism test is what shows how much or your body’s marrow is yours vs. your donors. Typically, at day 12, it’s a low number and remains there for up to 6 months. The test is usually never done until day 30, but because of my oddly quickly engraftment they were too curious to wait. I’d been told that the testing would take 5 days to come back. They’d been drawn on 12.
This was the moment of truth.
She set the paper on the bed and I scanned down the page. She said the number before I could find it.
I stare down at the page and then keel over into an ugly cry on my bed. I’m not sure what everyone else is doing. My partner is rubbing my back and holding my hand. My mom is standing on the other side dumbfounded. The nurses are screaming. The nice man in the pink is trying to get a signature and looks very confused. After my Mom signs his paperwork, we all sit in the hospital room and stare at each other. I post a video on Instagram telling people the news and call a couple of close friends. After a while, we all simply descend into silence and repeat things like “how is this happening?” back and forth to each other until we can’t anymore.
My brain is having trouble splitting this time. Instead, it’s pure joy.
In that moment, I realized that it was the beginning of something. I was on day 14; the real challenge is making it to 100. To living life and rebuilding completely from scratch. But right there, something had happened. Something pushed the self-checking part of my brain away for a moment. After five years, a truly impossible thing had taken place on a remarkable timeline. I was sitting in the middle of an unprecedented moment; something I’d never allowed myself to accept as a possibility.
My disease was gone.
The next couple of minutes were filled with a very particular kind of stunned silence and quiet mumblings of miracles. I spent most of it curled in a ball on the hospital bed trying to wrap my head around having a new blood type. Having hands. Being able to breathe.
Realizing that I’m going to be old someday.
At some point during all of that, my partner and I are left alone in the room. He pulled a chair close to my bed and I wrapped myself around his neck, crying into his shoulder. I’m mumbling more than talking. Then, we’re both silent; I’m shaking.
Carefully, he picked up the piece of paper and turned it over in his hands. I leaned back and looked at him without removing my hands from his shoulders. We stared at each other in silence.
“This,” he pointed at the paper. “This means… we get to spend the rest of our lives together.”
He put his hand on my bald head and I put my hands on his temples. This is the first time we’ve been this close to each other, face to face, in 30 days. Our noses are practically touching. I haven’t been allowed to kiss him. Until now I’ve been too afraid to do so.
The moment I did, something felt different.
Immediately I knew why and kissed him again, grinning.
As long as I can remember, my mouth has always trembled when I kiss. I’ve never really known why, but they always have in some minor way, no matter how hard I’ve bconcentrated or tried not to do so. I've always been self-conscious about it. I’d always wondered if he’d noticed too. But in that moment, my lips didn’t shake at all. My mouth was steady. For the first time in my life, A kiss felt like a kiss.
The world was still at last.
Both of us cried.
Everything you want is on the other side of fear.
Interested in learning more about how you can be a bone marrow donor? Sign up for the registry today: join.bethematch.org/kpoements
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