Day +68. My counts were steadily increasing over the past few weeks and were so damn close to breaking into the normal range, and then they dipped a bit setting me back two weeks. I’m frustrated but not discouraged just yet, despite my brain going to the *crazy place* frantically worrying if the graft is suddenly failing, again. It remains to be seen if this is graft failure or just a hiccup in the progress. Either way, we’ll have to see how things continue to progress over the next few weeks.
Still battling off GVHD rashes. The worst are ones that appear in my arm pits. 😦 I’ve been taking it very easy physically as well. I’ve had a fair amount of body aches that have left me fatigued and cooped up in bed for days. Even though this is the most blood I’ve had in my body for more than 15 months, my weak body is still working to regain normal stamina and to rebuild strength in my unused stabilizer muscle groups. Also, it doesn’t help that El Niño has made this winter one of the coldest in SF history. So freaking cold.
I’ve always been a huge fan of New Years. It’s a time when you gather with friends and loved ones to celebrate the past year of life and welcome the upcoming year with open arms, and champagne. I used to love reflecting on the past year, with all of the successes, failures, heart break, tears of joy, pangs of sorrow that happened, and smiling at how wonderful life is. I’d be the first of my friends to ask what people’s resolutions were because I had so thoughtfully spent time thinking about how I wanted to better myself for the upcoming year. I usually had a list of about 4-8 resolutions, each carrying significant reasons for why they’d made the cutoff (of, like, the 20 resolutions I had brainstormed).
But this year, was different.
I wasn’t excited to get dressed up for any party and socialize with people, to stay up until the clock struck midnight, to shout Happy New Year, to raise a glass of bubbly, to kiss my boo on the lips, to lead the group in a drunken rendition of Auld Lang Syne (one of my all time favorite holiday songs, jsyk). I couldn’t be bothered this year. In fact, I barely made it to the East Coast New Years. I watched the ball drop, sent Ricky on his way to a friend’s party, and then I promptly went to bed at 9:30PM PST.
What made this year so much less exciting than all of the previous ones? Aside from the body aches, immunocompromised physical state, and overprotective mother, what internally was different?
I felt defeated. Completely and utterly defeated. I didn’t see 2015 as a success or a victory. Instead, when I looked back on 2015, all I could think of were the hours spent at the hospital, the rough bouts of chemo I endured, the number of days when I was bald – not by choice, the fatigue, the malaise, the countless number of pills I’ve swallowed, the shots, the biopsies. Allllll of the things, albeit life saving things, that slowly chipped away bits of my humanity, slivers of my sanity, flares of my personality, until there was nothing left but a defeated, drained body.
And this, made me sad. And it made me cry. And it made me depressed for a few days. I didn’t want to be bothered to do anything, or talk to anyone, or even shower (!). But, I knew I couldn’t go on living like that. My recovery was going well and too many people believed in me for me to selfishly just give up that easily.
With the help of Ricky, and a mantra I had adapted in the earlier days of this illness (more than a year ago now!), I reminded myself that every day is progress, each week a victory. What I also had to remind myself was the “progress” and “victories” that happen aren’t always going to be what I imagine them to be. Touché, life. Touché.
So, my New Years resolution this year (there’s only one) is to: Win Each Day. Such a vague, non-action item resolution that basically leaves everything open to interpretation, but I like it. Winning on any given day can be a different thing. One day could be doing laundry. I won finishing laundry. On another day it could be finally consolidating my student loans. I won student loans. Psh, that’s a lie. On days that I feel like I’ve not won, at least I can say I tried to win anyway.
P.S. I got my Hickman catheter taken out last week! It’s been such a joy not having my octopus arm bothering me in the middle of the night when I roll over and it gets stuck. And the liberation from having to flush the triple lumen each day is so freeing! I’m a new man, with a new scar on my chest that looks like a third nipple. #2016
My mom and me at Union Square. 🙂