
I didn't tell a lot of people about my surgery, donating bone marrow, until just before I went into the hospital. When I told them their expression would soften and they would gently ask "for who?" I would always respond the same way, "I don't know." The softness would disappear and the therapist in me would see their wheels turning. Many would say, "wow!", some would ask, "what do you mean you don't know?" and others just wouldn't know what to say. Many people who are close to me, and know how important and close to my heart this issue is, would simply say "congratulations."
Still, people couldn't get over the fact that I didn't know who, for four hours, I was going under the knife for. For whom I was going to be out of work for; whom I was going to be in pain for. For whom I was risking my life. Often when I told them, mostly people who I didn't know well, because my friends and family knew why I would do this, they would say "oh, well, they must pay you?" Every time someone offered that as my reward my face would burn red. Never once did I let anyone get away with it, "yes, they do pay me, for the rest of my life I carry with me the knowledge that I gave something to someone that few people can. My reward is life." Many people would say "you're crazy, I would never be able to do that," or my favorite, "don't you think your taking this a little too far, I mean, no offense. I know you're an advocate for cancer and all that, but isn't this a little.....much?" No... it's A LOT! Yet, I would often respond, "I hope that one day you can understand this, and I hope it isn't a day where you ever need something like a blood transfusion, or an organ, or bone marrow. But if that day comes, I sincerely hope there is someone like me, who takes it a little to far, there for you."
I have absolutely no regrets. I was not monetarily compensated. I was not paid. I had to use sick time at work, I had to buy my own pain medication, I had to drive 60 miles to Boston 7 different days at around 5:30 am for testing so I could be back to Manchester for work around 10:00 am. My dad and Aaron took time off from work to be there for me. No one complained, not one profited, everyone understood. It was unspoken. It was important. It was necessary.
For over a year I wondered what her name was. Was she okay? Was she anything like me? Did she look like me? If our genetics are so similar, will we bare any physical or emotional similarities? What does she do? Is she funny? Sarcastic? Do people gravitate to her? Does she make friends easily? Is she suffering? Does she love puppy dogs? Honestly the list goes on and on. And on.
For a year all I knew is what "they" would tell me; a 20-year-old (at the time of transplant) female with A.L.L. (acute lymphocytic leukemia) I knew what vicinity she lived in because Peg ("they") my agent at Dana Farber Cancer Institute (DFCI), had scrolled on her to do list "courier to Seattle area." Hundreds of times I would google "bone marrow transplants seattle washington" with no luck. What I was hoping for, mostly, were two things. 1. Was she okay? and 2. What is her name? Every few weeks I would email Peg and simply put, "Anything?" What I wanted, was to know that I did something right, that my healthy marrow would kick ass, that for once, I did something completely selfless for a perfect stranger. At DFCI you can't know anything about your recipient unless the exchange is mutual and it has been a year since transplantation.
When October finally arrived, I filled out that paperwork to have it sent to my recipient (everything goes through DFCI.) She had the option to remain anonymous- if I told her who I was, she still had the right not to disclose her identity. They would send her my paperwork and she would send hers if she wanted to initiate contact. Ultimately it was up to her.
I would talk about her all the time. Aaron would often say, do you think she's okay? Have you gotten an update on her? Has Peg emailed you about how she is doing? It was like Aaron and I had our own little language. If he or I said "her" or "she" we knew who it was we were talking about, we didn't need to clarify.
Around the last week of October Aaron called me,"Where are you? Are you close to home yet? How much longer?" Slightly irritated I answered "Yeah, like 1o minutes out, why?" "Oh nothing." The minute I walked through the door he handed me an envelope. "I've been dying to open it, I've been staring at it for the past 4 hours, open it! Open it!" he squealed. I looked at the return address and my eyes locked onto his. I did the math in my head: it's past the year mark, they would have already sent my information to her, she could have already responded... yep this could be about her. I carefully opened the envelope as if she herself, her fragile body, was inside.
It was my year-post-op surgery survey (I joined this study so they can track my progress throughout the rest of my life. Basically, I'm a test subject, and, until I die I will let them track my health and progress so they can determine if there are any long term effects of donating bone marrow- really important research and it was completely voluntary.) Ouch. The disappointment. Aaron apologized for building it up so much, but it wasn't his fault. We just wanted to know something about her. We love her.
On November 6th I was sitting at my desk in my office and I checked my personal email. I had a new message in the spam folder, and I checked it because a lot of wedding vendors have been emailing me and their emails have been going straight to my spam folder. The subject was "Hey this is Ashley!!" I had no clue who that was, and it never occurred to me. The email started off like this:
Jessica,
Hi, I'm Ashley. I can't thank you enough for donating your bone marrow.
And with that, Ashley answered the only two questions I had been aching to know. 1. What is her name? and 2. Is she okay? It was eerie that Ashley answered my two burning questions in the first two sentences. Ashley was no longer a she or a her. She was real and she was alive.
But there is so much more to the story. So much I want to say, so much I want to tell. I have full and complete permission from Ashley to speak, but still, oddly, I am protective of her privacy.
What I will say is: Ashley is absolutely amazing; diagnosed with cancer while studying abroad in Spain. Ashley is gorgeous, smart, approachable, kind, generous and resilient. Since the minute I received the email, we have had regular contact with each other. It, to me, doesn't feel like the obligatory "hey thanks for your marrow, I'll talk to you a while, then we'll move on" type of conversation, but instead, like we've been friends, good friends, for a very long time. I can be myself around Ashley. I don't second guess what I write. This is more than I could have asked for.
Ashley is doing well. In July she had to have another transplant but things are gradually looking better. Her dietary restrictions are difficult, her immune system is vulnerable, she has to strictly limit and closely monitor her time in public. She recently had her last chemo treatment and hopes to again go to Spain one day. She likes wine (wine-hehehe) and mushrooms :)
Yesterday I got a box in the mail. A box from Washington. Where our Ashley lives. Inside it contained 2 necklaces; one of a small silver puppy, the body of the puppy a heart- it's called "puppy love" the other a red and silver "life saver" pendant on a silver chain. The pendant like the rescue donut thrown into the water when someone goes overboard. Both precious, both fitting. I immediately took my tree of life off its chain, the pendant I wear every day to remind myself of Ashley, and added it to the chain with the life saver raft. Both together now. My representation of her, and hers of me on one strong silver chain.
This is all I can say right now, not because that's all there is, but because that's all I am capable of. This is so close to the core of my emotions that it's difficult to even translate it to paper. I'll start here and keep updating as I'm ready.
Her name is Ashley. Ashley.
2 comments:
Hello Ashley! I really like that picture of her. Touching post.
that's amazing. you both are amazing, strong beautiful women *hugs*
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