It’s been a little while since I’ve thought much about dying. Sure, most people go their whole lives and never entertain the idea that any given day could be their last. Gosh, I mean, that’s morbidly depressing! Like I’ve said before, if we all went around living each day like it were our last, we’d be walking zombies, complete with dark under-eye circles that no amount of Revlon could reverse. When I was diagnosed with PVOD last year, death came unwelcomed to the forefront of my blissfully ignorant existence, like a crowd of Orcs coming for tea. And let me tell you, it was messy, and uncomfortable…sort of like swimsuit shopping or any time I’ve experimented with flirting.
As the days and weeks and months of this year have ticked by, this mortality salience, or rather, the sting and the shock of the news of my new reality seemed to lessen with time – that reality being that without the gift of a transplant, my days on this earth were numbered. Of course, there were random, average, every-day moments death would creep in: Eating a meal with family. Driving around Sundance. Decorating the Christmas tree. One time, I looked at Henry in the darkness of a movie theater, credits rolling, and suddenly my love for him felt too big. So big, that it spilled out onto my cheeks. He wiped my tears and said, “I know.” Because he does, almost as well as I do. Death carries with it fear, certainly, but most of the time, it’s a little ache that starts in my finger tips and spreads to those tiny painful spots in my heart that feel things a little too deeply.
It’s too many feelings, I tell you! (And I thought I couldn’t handle when the most popular guy in school sent a gaggle of cheerleaders to eat lunch with me so I wouldn’t eat alone. Sounds great and all…until my friends showed up and were like, “what the…” #pittylunch #kindnessvictim).
Well…I had a big appointment yesterday. To recap, in August, my doctors had an inkling that I might have a condition that could be treated. Hmmm…that’s a new concept! Since then, I’ve been on Prednisone and Cellcept for the past 7 weeks and I’ve been going to Pulmonary Rehab faithfully. At my appointment yesterday, they had me do another Pulmonary Function Test (PFT) to compare with my PFT’s from August before treatment.
Drum Roll Please…
10% INCREASE IN LUNG FUNCTION
This was the first time in a year that I’ve heard the words,“You seem to be improving” instead of, “things are looking worse.” And today is the first time, in a long time, that I don’t feel like I’m dying. And let me just pause for a moment before I go on and say this…
GOD IS GOOD! HE ANSWERS PRAYERS! MIRACLES CAN HAPPEN! FO REALZZZZ!!!
Many of you have written me, telling me how you are praying for me, and how you’re putting mine and Henry’s name on the prayer roll at the temple, and you’re fasting and sending positive vibes and thoughts our way…well…THIS IS WHAT HAPPENS! PEOPLE ARE HEALED! CAN I GET AN AMEN?! I know with my whole heart that this is an answer to your prayers. To my prayers. I know I’m not out of the woods yet, but I’m feeling just so darn hopeful and happy and excited! And overwhelmed and humbled and the opposite of speechless cuz I can’t stop laughing (a very maniacal laugh…take that DEATH!).
Here’s the status: They’re going to taper me off the Prednisone, which has caused me to gain 20 pounds in 6 weeks. Bye bye puffy face! I’ll remain on the 1000mg of Cellcept twice daily. I need to keep exercising and eating healthy. At the end of 3 months, another check up with PFT’s and we’ll see how we do. If I keep improving, there’s a chance (25% give or take) that I won’t need a lung transplant at all. If anything, we could push that surgery off a few years. Who knows the advancements they could make by then. If my condition worsens during this time, then I can still be listed for the transplant at any given moment. I may never make a full recovery and will most likely be on oxygen the rest of my life…but hey…6 months ago, I thought I’d have new lungs by now. It just goes to show that WE KNOW NOTHING. Isn’t that comforting? In this case, it is to me. Anything can happen.
More waiting. More unknown. I’ll take it! And let me ask you, what life isn’t about waiting and the unknown and faith and hope and “what the crap is going to happen?!” I’m reading a memoir When Breath Becomes Air by Paul Kalanithi, a neurosurgeon who lost his own battle with lung cancer. His unique perspective is such a gift, a story with all too familiar undertones to me, a reminder that sometimes the dying have the most to teach us about living. He quotes a friend, “There is a moment, a cusp, when the sum of gathered experience is worn down by the details of living. We are never so wise as when we live in this moment.” I hope to add this to my living repertoire. And perhaps, living for the now is the bravest thing we can do.
“It is vain for the coward to flee; death follows close behind; it is only by defying it that the brave escape.” Voltaire