All We Got: Choosing a BMT: What are you willing to give the life you want? (Day 70)

William Blake is an English poet and artist. He wrote that one poem you like — the one about the boy stuck in a Chimney. Yeah, that guy. That’s right.

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My IV started beeping; cutting my attention away from my notecards. I immediately knew what the problem was: I was typing on my laptop and the IV didn’t like that. The medication I was getting had a nasty habit of bubbling up in the IV tubing and wreaking havoc. I was getting my monthly immunoglobulin infusion; which had turned into an eight-hour study session for an exam the next day that I'd neglected.

The nurse came into the room and adjusted the rate of the medication. She smiled at me, “Can I get you anything?”

I shook my head; readjusting the laptop on the pillow in my lap.

“I saw on your schedule that the BMT doctors are supposed to come to see you in a bit.” She added, “They should be here at 11.”

I scrunched my nose, not recognizing the acronym for a moment. Then, I remembered. My rheumatologist had scheduled a consultation with the bone marrow transplant team. I didn’t really know what that meant or how it would apply to me, but I’d agreed anyway. I’d forgotten the appointment was today.

I’d barely had time to turn the computer back on when three doctors came into the room. I didn’t recognize their faces — rheumatology patients rarely interact with bone marrow transplant world and up until that point I knew nothing about it. All I knew was that transplant might involve chemotherapy and maybe some blood.

One of the doctors, the woman that would eventually become my primary, began explaining the basics of the procedure.

Another woman said to me, “Based on your medical history, you’ll be on the drugs you’re for the rest of your life. But if you do this, we could take you off of steroids. We could take you off of everything.”

I paused. “You mean… it would be gone?”

One of them nodded. “It’s a potential cure.”

A Cure. Nobody in their right medical mind had ever said those words to me before. I couldn’t quite fathom a world in which that was an option. I’d never allowed myself to.

I had known for quite a while that my life was more than likely going to be a short one without a massive intervention. My parents were still in denial. My friends still told me to be positive. No one spoke about what I already knew, but my flare in December had genuinely scared me. It also should have killed me. I never told anyone how bad it actually was, how close I’d been to death, until months later. But after fighting doctors for three weeks, through hard medications and treatments, and after four previous relapses, I fully understood my situation. My body couldn’t do it anymore. In my own mind, I had also reached a breaking point. I didn’t want to die, but I also understood that my life wasn’t sustainable. Doctors would fight for me for as long as my body could handle it, but in the end, I was going to lose. Sooner rather than later too. I had always said that it would be before my 21st birthday. I don’t know why, but it felt like the right number. Now I was 20 with a high chance of another relapse within the next year. Making it to 21 didn’t exactly seem like it was in the cards for me.

Yet, sitting in front of me were three women telling me that this didn’t have to be the case. That maybe I could make it past 21. There was another way.

“You could get a bone marrow transplant,” she said. “Given your circumstances, you’re a perfect candidate for the program.”

“It’s not without risks,” another one said. “It’s a high mortality rate procedure. Other things can happen during and afterward that make it complicated.”

I sucked in my breath; gripping the sides of the chair to keep myself calm. I was suddenly aware of how alone I was in that room with them. What was I doing? I thought, Are you really considering this?

What are you willing to do to live the life you want?

I’d been asking myself that for the last 5 years. I’d asked myself countless times, laying on the bathroom floor naked, what would I do if you were given the choice? If you could get rid of this, would you?

Do you want to live?

There are choices in life when we realize that we must be prepared to give everything we have. At that moment, I decided that stepping away from the certainty of the life that I had was worth stepping into a life that I wanted — if only the attempt. Choices like this are not simple. Every moment, for the rest of my life, is a constant reaffirmation of the decision I made in that room whether I like it or not. I have to actively live with that choice and the ramifications every single day. And I was willing to risk everything to do it.

When the doctors left the room, I stared at the packet they’d left behind for a long while. I didn’t open it. I didn’t need to. I just kind of stared at the words on the front. I was in that weird in-between place — right before you cry; trying to stop yourself.

Bone marrow transplant.

I tried to calm myself down. I didn’t want to cry and have to nurse come in and find me (which is, of course, exactly what happened). So I turned on my Bluetooth headphones and hit shuffle. The first song that played on my iPhone was All We Got by Chance the Rapper. The trumpets kicked in and the beat dropped. And all at once I knew exactly what I’d done.

— If you’re reading this, it means that I turned 21.