Lucky 13
I did it again.
Exhaustion from my two hours of sleep last night overwhelmed me as I scrolled through the Lufthansa movie selection, marking the ones I wanted for the flight. Zootopia 2 has been at the top of my list, so I happily watched that before a spot of lunch and a nap. I walked around a flight packed with my coworkers before returning and selecting another one from my bookmarked list, Audrey's Children. The name niggled in my brain as something I had heard of before and noted wanting to watch. The description stated it was about a doctor and the children she wanted to help, and the open scene stated it was based on a true story. I settled in to begin.
And just per my luck, it was about cancer. Two days until my 13th bone marrow
transplant birthday, so I decided why the heck not, could be therapeutic, and continued watching the
movie. And cried I think almost the entire two hours of the movie. There's the
usual heaviness that accompanies me leading up to BMT birthday, and I had the
typical triggers of hearing the chemo names. And so, sitting in my airport seat, I sobbed and sobbed, oblivious to my seat mate, or colleague behind me. The tears I don't allow myself to cry in my house were bottled up, and seemed to explode as a never ending fountain.
But there was something new today.
A sense of gratitude like I haven't had ever before. For doctors like Dr Evans
who pushed the status quo to find a better way and increase the survival rates
for children like me. The movie glimpses into the weight oncologists carry, and
I'm crying with gratitude at my many doctors. Dr Peter's with his funny ties.
Dr Ahuja telling me what’s my hurry to go to college. Dr Picone with her contagious smiles
and laugh. Dr Hackney following me in survivorship. Dr Letterio with his
kindness and push for research and better outcomes for us. And dang it I know I'm forgetting so many- many with shaved heads in solidarity with the children they serve. The Fowler family, for ensuring we didn't have to sit in the drab and menacingly cold hospital walls, but could enjoy a colorful space suited for our age. My beautiful nurse Ceci
who was my lifeline every moment of cancer, and afterwards. A beacon of hope
and kindness in hell.
I saw the children in the movie and cried for the ones who aren’t with me. The
little toddlers taking their first steps in the corridor, the nurses and I cheering them on as they held the IV poles. My little Spanish
friend, doing our nails together and rubbing each others bald heads. The little
kid in the seat in front of me is poking his head to look at me and play with
the windows shade. I hope so hard that when he's my age the survival rates are
even higher and that he will never know the devastation of loosing his friends.
I see the staging system in the movie, and follow along with it. Nodular
sclerosis, Stage 4b. The most advanced staging of Hodgkin's lymphoma. Two weeks
to live. I see the parents in the movie. Lately, I've been thinking a lot more
about mine. How do you deal with the news that your oldest daughter has two
weeks to live? I will never have a biological kid, and I hope never to know the
pain they went through. How to care for their other children, how to afford
treatments, how to make decisions. Some decisions have affected the rest of my
life, and sometimes its hard to grapple with. I remember my dad bringing his
sheaves of PubMed study articles and arguing protocols with the hapless
resident who drew the short straw of dealing with the Anands. But I'd like to
believe that my dad's challenges made them think, and muse on if they were
actually fighting the hardest to be the best damm oncologist they could be.
I've seen changes in protocols since I was diagnosed, some that I've been
privileged to be part off directly and I'm sure my dad indirectly as well, but all of which will have a positive impact on the
next round of cancer patients. A small beacon of worth for what we went
through.
The movie follows Dr Evans at CHOP, Children's Hospital of Philadelphia. A
scene cut to her looking at 4 Eagles players and my throat caught, as I
remembered why I had heard the movie title before. The very first Ronald
McDonald House (RMH) began in Philly, with the Eagles support. The closing
credits listed some of the facts of RMH, and my heart is overflowing with the
gratitude of every single person who made it possible. It played a huge role in
my families life, and I can't imagine how I would have survived without the hot
meals my mom or sister would walk from there when I refused to eat. Or the
times my oldest brothers could walk over to watch TV together. Or the fact that
I knew my dad could have a place to cook and share his love of food and my mom
could have someone to talk too and my siblings could paint Easter eggs and play
with dogs and practice their piano. I am an oldest child of Asian immigrants, and the weight of
what I was putting my family through did and continues to hang heavy on me. RMH
eased those burdens.
Last night I walked home with a friend, who I'm going on a weekend adventure
with soon. I mentioned how a member of our party didn’t know my medical
history, with the intent of not sharing with her as I don’t feel safe with her
yet. Few on this plane know my past. My dress does reveal the Mediport scar on
my chest, and some of my coworkers have celebrated my BMT birthday with me
before. But others know me only for my work in Europe now. I was proudly
introduced to others from their offices, or excitedly greeted by nervous ones
happy to see a familiar face. My friends in Luxembourg have never seen me bald,
or throwing up, or unable to walk. One has seen me lying on the floor in pain,
and a few others recently saw me shutting down when my sugar dropped. But they
see an active, thriving, living Jen.
I have a life now. Yes, I'm tethered to an insulin pump and will be the rest of
my life. Yes, my lungs have been screaming to cooperate in the cold of the
recent weeks. The 10 inch mass that once lived there having left its indelible
mark on my life. But I'm alive. Due to the work of the researchers who didn't
give up despite the obstacles. Due to a medical team and parents who forged a
treatment path. Due to my family and friends who surrounded and supported me.
Due to the Lord's incredible kindness and sovereignty.
Lucky 13. This week, I get to see coworkers from around the world, and my past
roles. I'll get to see Megs and Ruth and John. I'll get to out my feet in the
ocean and I'll eat taco bell and corn dogs. And I will be drinking a Shamrock
Shake in support of Ronald McDonald Houses everywhere.
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