Day +113: Keeping on keeping on.

Day +113. A drop in hemoglobin to 10.2 g/dL which is the lowest it’s been since Thanksgiving, and a dip in neutrophils to 0.96 x10^9/L (mild neutropenia). Platelets have been stable and holding strong!

My lower counts are a bit confusing this week since we’ve been slowly tapering down the cyclosporine (immunosuppressant) drug for the past month now. Remember: less immunosuppressant = more active marrow = more cells, in theory. What is encouraging, however, is we see a marked increase in reticulocytes (premature RBCs) indicating that my body senses the drop in RBCs and is working hard to make new ones. We’ll see what happens over the coming weeks. As far as the lower neutrophil count, like I said last week, some donors (especially of Asian descent) exist in a lower range so that may be my reality.


This past weekend was Valentine’s Day (VD), or as I like to refer to it Single’s Awareness Day (SAD). Though I wasn’t celebrating the single-ness of the day, I’d much rather be SAD than have a VD! *ba dun ch*… I digress.

Ricky and I spent the day being domesticated and braving the insane crowds at IKEA to enjoy Swedish meatballs (obv) and purchase a strainer and park blanket bag. We saw Deadpool and had In N Out for dinner. Quite the exciting day — and super exhausting. I was a stumbling zombie by the end. (Maybe the overexertion/stress caused my cell counts to dip? Who knows!?) Either way, I would highly recommend going to see Deadpool if you’re over 17 and enjoy witty, gritty, gruesome, rather violent, fourth-wall breaking movies. Otherwise, Zootopia’s a good runner up.

flowers

These definitely brighten anyone’s VD. Courtesy of Ricky. 🙂

 

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Day +106: Let’s goooo marrow!

Day +106. Today, I received the results from the recent chimerism test (taken around day +90) and bone marrow biopsy. So far, I’m still 100% donor — peripheral blood cells, B & T cells, and neutrophils — and the cellularity of my marrow is between 20-30% with definitive presence of maturing cells for all lineages. This. is. huge.

The reason why this is huge: in previous bone marrow biopsies (BMBx), specifically the first one I got which helped my care team determine I had severe aplastic anemia, my marrow was severely hypocellular meaning there were <10% cells in the marrow and no signs of any maturing cells. Even the biopsy I got after the BMT graft that failed last summer before the SCT this past fall showed marked hypocellularity. FYI, A normal healthy 20-something has ~50% cells in their marrow, with the other ~50% made up of fat, muscle, bone, fibrous, and other types of cells.

So, I’m ecstatic to say that the SCT is successfully working so far! My counts have been fluctuating week to week, with my RBCs dropping a bit this week, but overall it seems that my cell counts aren’t crashing and are in a safe, albeit low, range. I’m hoping as we continue to taper down the cyclosporine and finish off the prophylaxis drugs (some of which are immunosuppressant too), we’ll see the counts rise steadily into the normal range and everything will be peachy. *fingers crossed*


Lately, I’ve been getting outside more and trying to walk as much as I can. I’ve been playing this balancing-act game with my body. I want to push myself to increase my physical stamina on a day to day basis, without pushing too hard to knock me out for the count. So far, I haven’t been very successful. I’ve overexerted myself a few times which leaves me tired and recovering in bed for a day or two afterward. I’m starting to get the hang of it though, and I’m better aware of when enough is enough and I should rest or stop what I’m doing.

Recovery is a double-edged sword and is proving to be one of the most challenging processes I’ve ever endured so far. Mentally, I know I should be able to clean my room, do my laundry, walk a few miles, cook all my meals, make and keep plans with friends, and work out in a single day, but in reality, the day is a win if I get two of those things done in a day. So, it’s a slow process. A slow, long process.

 

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.