Day +100: We have arrived.

Day +100. We made it. I’m here. The beginning of the next phase of recovery in which any new symptoms that occur are officially chronic GVHD (vs. acute). Aside from the acute GVH symptoms, I should also look out for loss of flexibility, joint achiness, dry eyes, dry mouth, and new rashes. So far, things are looking good. I’m still [relatively] flexible, haven’t needed to call Ben Stein, and don’t have any new major symptoms. I hope it stays this way.

Counts from my appointment yesterday were stable with the neutrophils bumping back up out of the danger zone. Whether it was totally due to the neupogen or because my cells recovered, we’ll never really know. I’m just happy that I’m not on house arrest anymore though I’m still being cautious. My doctor had mentioned that transplant recipients of asian descent tend to have a lower neutrophil range in general and some people happily exist around 0.5 x10^9/L. We won’t really know what my “normal” will be until I’m completely off the cyclosporine and the other prophylaxis drugs. So, for now, we wait and see. Shocker.


My how different this day +100 versus the previous one is! If you recall, the previous day +100 post-BMT back in June was a rough one for me. It was officially known then that the graft had failed and the plan was to wait and see if the chemotherapy was sufficient enough to “jumpstart” my own immune system into working. [[Spoiler alert: it didn’t.]]

I was really frustrated and down on myself about the prospect of the future and what that meant for me. I picked up a book, Pema Chodron’s When Things Fall Apart: Heart Advice for Difficult Times, to help process and cope with the reality that I might have been living my last days. I was inspired and reenergized by the words of Chodron and turned a new leaf with my outlook.

Today, I can’t say that I’m in much better shape. I mean, yes! physically, the SCT worked and I’m still 100% donor, and yes! emotionally, I’m supported by my amazing friends and family who keep inspiring me to move forward. But mentally? I feel completely confused and unable to sort things out; stunted if you will.

Don’t get me wrong, I’m beyond-words grateful for this second chance at life, but where does one go from here? How does one “go back to being normal?” How does one rebuild a life? What is normal? What are the reasons why I was given this second chance? Is there more than one reason? I suppose I’m dealing more with an existential crisis rather than needing to cope with my mortality — something I’m pretty good at doing by now — so this is a bit different than last June. But, is there a reason why I’m still alive? I can’t just chock it up to luck or chance, though modern medicine has really played a huge part in this all.

Call me a typical twenty-something or just human. I’m sure everyone thinks about these things and part of living life is getting to find out the answers. But I’m pretty impatient and would like some hint, a sliver of guidance, a whisper of direction, something. I know eventually everything will click and it will all make sense, or it won’t. Either way, I’ll just keep going on, one foot in front of the other, one day at a time. Because, really, what other choice do I have?


To end this strikingly uplifting post, I leave you with a poem.

The Line

There is a line on my nail beds.
A line that tells me when I died, and where I begin.
You see, it’s weak, sickly, odd.
It’s a marker showing when chemicals flowed
In my body
And quenched the remaining fighters.

There is a line on my nail beds.
A line that reminds me of my mortality.
You see, it’s darker, weaker, discolored.
It’s fragile and at a moment’s notice
It’s easily taken
And then it’s gone. Forever.

There is a line on my nail beds.
A line that masks the internal struggle.
You see, it’s proud, strong, vulnerable.
It doesn’t want to worry or bother,
Make you uncomfortable,
And it’s my fight to win.

There is a line on my nail beds.
A line that ushers in new growth.
You see, it’s young, steadfast, ambitious.
It wants to carpe diem and go!,
Exploring and living,
And making the most of life.

There is a line on my nail beds.

 

 

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