Day +136: Rainy days.

Day +136. It’s been a little over three weeks since my last post and quite a few things have happened! I finally have a chance to sit and write because of the calming rain here in SF, but first, a quick health update. It seems like my counts are fairly stable where they sit, which is a little on the lower side of normal. That’s okay because my new marrow may just produce at a lower level (which is waaay better than not producing anything at all!). We’re still tapering off the cyclosporin slowly. Once I’m completely off of it, we should expect the counts to rise some more so that’s something to look forward to.

Otherwise, I’m getting out and about doing more things, gaining more strength, and having more energy. My goal is to be back to work by mid-April which I think gives me enough time to further increase my stamina for activities, to start getting back into an exercise routine, to begin thinking critically again, and to sort out all of the mixed emotions that were left unprocessed since last year (a huge feat which has been difficult to get through).


More on that: 2015 was a crazy year for me. Having gone through a bone marrow and a stem cell transplant, battled severe anemia and survived on the 30+ units of blood from strangers (aka I was a vampire), and dealt with some harsh heartbreak and disappointment, most of the year went by without my noticing. I woke up each day not thinking of the next, but focusing on getting through the whole day. My emotional state for most of the year was neutral, numb. Sure there were peak highs and deep lows at times, but for the most part I kept even keeled and calm.

I’ll tell you, it’s extremely difficult to process through all of the emotions when you’re trying to stay afloat, and by afloat I mean beating chemo brain. I’m utterly amazed at how foggy things are when I think back to any of the time post-transplant(s). How did I function? How did I do anything I needed to get done? How did I maintain any relationships with people? The truth is, I didn’t. I feel like I was an empty body struggling to do “normal functions,” to keep it “together.” Even as I write this now and reflect on just a month ago, it surprises me how much clearer I can just… think.

And with this thinking and reflection come memories of things left unfinished, unprocessed, unfelt. Things that at the time didn’t get the proper attention they required because I needed to focus on eating or taking medicine or my next appointment. There are so many relationships that were left to wither as I became withdrawn and private; rightfully so because it takes two to tango for any relationship. I am and will forever be grateful for all of my friends and family who have supported me and stuck by my side through arguably the hardest thing I’ll ever have to face in my life. Now, though, I feel this strong need to repair and rebuild what was lost, and to repay people somehow, even though I know it’s impossible. These are things I’ve been reflecting on the most as of late.


In other news, I recently got back from a little trip to Austin to visit some good friends of mine. My friends Katie and Amanda so graciously hosted me and Ricky on our visit, and their friendly rescue Vickie was great company too. I got to see an old friend from high school Angeline, who I haven’t seen in ten years (geez we’re old), and old college buddy Daniel and his wife Logan.

Here are a few choice pictures from the trip:


Last night, I had the honor of sharing my story at the Asian American Donor Program‘s (AADP) 9th Laughs for Lives Comedy Benefit. The AADP is a fantastic program that seeks to match patients who are in need of a bone marrow or stem cell transplant with a donor by hosting marrow registry drives and encouraging people to join the registry. They focus on Asian-American and other non-white populations because these are the populations have the highest need with the lowest number registered.

There were a number of hilarious comedians performing stand-up comedy at the show, both professional and amateur. Right before intermission, myself and a stem cell donor Andy were called to the stage to share about our experiences as a recipient/survivor and donor, respectively. I talked about how/when I was diagnosed and how this transplant has changed my life. It was really humbling to share some of my story on stage and how I really feel like I have a second chance at life.

Anyway, here are some pictures from the event:

If you haven’t done so already, I urge you to join the bone marrow registry no matter what racial ethnicity you are. You could seriously be saving someone’s life one day.

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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.

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

 

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.

 

 

Day +92. Go call your mom and tell her you love her, today.

Day +92. I’m officially neutropenic (again)! BAH! How’d that happen? My neutrophil count dropped to 0.32 x10^9/L which is way waaaay low. Like borderline critical levels low. Thankfully everything else (RBCs, platelets, other white blood cells) held constant since Monday. I got a low dose (300mg) shot of neupogen to boost the production of neutrophils and I’ve started a new antibacterial medication – levofloxacin. Though we’re not completely sure why this is happening, we think it’s still due to a different antibacterial medication I was taking but stopped about two weeks ago (septra) which is known to be rather myelosuppressive. Last summer when I stopped taking septra, it took about 3-4 weeks for my white counts to come back up so there isn’t a huge need to be worried, but it’s definitely not ideal. Till my next lab draw, I’m still on public/crowd restriction, no untrustworthy outside food consumption, and lots of rest. *sigh*


I just dropped my mom off at the airport and she’s on her way back to El Paso. I’m actually sadder than I thought I’d be. Much. sadder. Like, my eyes are red, nose is raw, and I’ve-gone-through-half-a-tissue-box-already sad. I think I’m most sad about sending my mom home when my health is back on the rocks, and I don’t mean with a twist of lime.

It breaks my heart to say bye to her when I know she’s worrying about what’s going to happen, what I’m going to eat everyday, how I’m going to fare, who’s going to check in on me; you know, basic mom thoughts. I wouldn’t be sending her home if my care team and I weren’t confident that I’m able bodied enough to take care of myself, but it still makes me sad to know she’s constantly worrying.

Anyway, I’ll be alright. I’ll keep trekking on. I’m gonna make it. I’m surrounded by an amazing network of friends, my family is just a Facetime call away, and if anything, flights to SF are easy to get from El Paso.

If you’re one of the fortunate ones whose mom is still alive, pick up the phone and call her. Tell her you love her and tell her you’re thankful for everything she’s done for you, no matter how much or how little that may be. Regardless of how good or bad your relationship is with her, without her you wouldn’t be here. At the very least, thank her for being your incubation chamber while you were being formed.


Win each day.

 

Day +85: No, I didn’t win the Powerball lotto.

Day +85. My counts dipped today back into the “let’s be careful with everything again” range. Food restriction, public restriction, and more rest are in order. Over the past few weeks I’ve gone from the yay, I’m seeing progress every doctor’s visit to yay, we’re playing games with my meds to keep my counts in a good range. This week happens to be a low week due to a different antibiotic that I switched to recently (to Septra from Dapsone) that’s more strongly immunosuppressive. Also, the immunosuppressant I’m taking, cyclosporine A, was relatively high in my blood.

To break it down:
High immunosuppression (via drugs, etc.) = less functional marrow.
Less functional marrow = lower blood counts.
Lower blood counts = more tired Min who’s cooped up inside.

These things compounded together, plus some other things that’re prolly going on but are not graft failure *crosses fingers and does tribal rain dance*, help explain the drop in counts. But I’m not discouraged. I was never guaranteed at any point that my counts would ever completely stabilize during the recovery process. Heck, I’m not even guaranteed at any point in my life that the graft won’t just decide to fail, randomly. #BMTtransplantproblems

Overall though, my health has been on the up and up! Despite my right ear still being 50-80% deafened (still waiting for my ENT appointment) and the sparse rashes/red bumps on my torso/head/neck, I really don’t have much to complain about. I’m still super grateful that I haven’t experienced any of the more severe GVHD symptoms (e.g. vomiting, diarrhea, cramping, excessive nausea, etc.).


Apologies for being so slow (lazy… tired?) to post updates! I’ve been getting out more to walk and do things in public. I unfortunately didn’t win the $1.5bn Powerball lotto though.

I went grocery shopping. Never thought it’d feel good to say that. I saw movies, in the theater. Star Wars and the Revenant to be exact. Exciting and gruesome, respectively. I played tour guide. For my mom. I took her out for a hair coloring and dinner for her birthday. I also got a rental car and we picnicked at Half Moon Bay, took in SF views at Twin Peaks, and drove over the Golden Gate Bridge. She really enjoyed the beach at HMB. She said it reminded her of where she grew up in the motherland by the same ocean (see: Pacific Ocean). I’ve been catching up with friends over coffee, ice cream, and meals. Slowly but surely getting back into a rhythm and re-crafting my independence/life.


My mom leaves next week. It’s crazy to think that she’s been here for just under three months. She was very resistant to booking the flight, but really I think it’s time for her to go. Not because we’re fighting or that I don’t want her here because honestly, it’s so nice being pampered by the woman who birthed you and knows you best. Breakfast made first thing in the morning, lunch ready to go, and dinner hot and served when you sit at the table. Who could complain about that?

I feel though, at this point in my recovery, I’m unable to keep progressing with her here. Sure, the special treatment has been super helpful and absolutely wonderful, and I’m beyond grateful and have a new appreciation for parents/my mom, but I’ve reached a point now where I need to start doing these things for myself. It’s really difficult to tell my mom, “No, I don’t want your eggs and bacon, I’ll have my granola and yogurt instead,” as she waltzes into my room with a tray for breakfast in bed. Who doesn’t like breakfast in bed?

There’s really no other way to break into independence than to jump into it head first. I’m well enough and strong enough to go grocery shopping, do my own laundry, and go about doing simple daily tasks — trust me, I’ve test run everything. The sooner I can get back into the routine of taking care of myself, the sooner I can get back to feeling normal and to living my life.


Now, this is all great and dandy and idealistic, but I’ve been burned before and I won’t let it happen again. I’m still being very cautious and careful with myself, taking as much rest as I need. I’ve gotten really good at listening to my body. What’s that you say? You’re tired from walking yesterday? That’s okay. Let’s binge watch a whole season of ‘Happy Endings’ today. Feeling a little achy? Let’s stretch it out and take it easy today. [The internal monologue I have with my body is ridiculous.]

Another great perk of progressing further in my recovery is that my brain is clearing up too! I solely base this on the fact that my personality (see: sass) is ramping up and the quick comebacks have resurfaced in conversation. #checkyoself


 

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At the Golden Gate Bridge. 🙂

Day +68: Ring out the old, ring in the new!

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

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My mom and me at Union Square. 🙂

Day +50: It’s beginning to look a lot like Christmas.

Day +50. All of my counts continue to rise! Hgb broke 12 today at 12.3 g/dL, platelets at 185 x10^9/L, ANC at 1.53 x10^9/L, and WBCs at 4 x10^9/L. I’m getting suuuuper close to getting into the normal range for all of the cell types! I’ve just gotta keep climbing. Thanks for the support Miley!

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The mild GVHD rash on my face and torso have finally cleared after a week of religiously applying a topical cream twice a day. I no longer have body aches or major fatigue, which is amazing. I’ve developed some congestion in my right ear which limits my hearing, but I’m taking a few medications to try and clear that up. All in all, I’m doing pretty well and my body is happy. 🙂


In other news, I’ve been keeping myself busy doing Christmas. I handmade 80 cards (thanks to Paper Source), as well as five different kinds of Christmas cookies (sugar, ginger molasses, raspberry almond thumbprint, chocolate peppermint crinkles, and mexican wedding cookies). It’s amazing how much you can do when your body is able to efficiently oxygenate itself with an abundance of red blood cells!


As the new year rolls in and I approach day +60, I’ll be going down to once a week appointments from twice a week. We’ll also be checking the chimerism once more to see if the graft is stable (vs. last time). If the chimerism results come back positive, my mom will be free to go back home! Since I’m fairly independent and able bodied, I won’t need a caregiver 24/7. That doesn’t mean, however, that I’ll be able to go back to life as it was. I still have to take all the same precautions as before (e.g. being careful about what I eat, always washing hands, avoiding crowds as much as possible), but I’ll at least be able to take care of myself more.

I have loved having my mom here and I know she’s enjoyed taking care of me again. It’s been so great to spent this time reconnecting with her since I left for college. I do realize though that she has roles to fill back at home and the sooner she can go back, the sooner things start to feel normal again. I’ll definitely miss all the homemade Korean food, but I’m getting well enough to start cooking for myself. I’m glad we’ll be able to spend Christmas and New Year’s together though. 🙂

Day +40: The chimera that WAS!

Day +40. Wow. What a week! First off, I am extremely thrilled to announce that as of day +28, I am 100% donor (well, my B cells, T cells, and neutrophils are 100% donor), which means that the allo stem cell transplant is working so far! #winning #chimera

Secondly, I’d also like to report that as of today my counts are still on the rise with my hemoblogin being 11.5 g/dL — the highest it’s been since (presumably) summer 2014. Platelets are doing well, neutrophils are stable, all systems go!

Things are progressing quite nicely. That is, except for the mild graft versus host disease (GVHD) that has started in the form of skin rashes on my face and upper body. I thought at first I was breaking out, like a pubescent teenager, with all of these bumps on my face and hairline and then to random spots on my torso. But then they started to itch like narsty mosquito bites and I remembered about the GVHD. I got two creams, one for my face and one for my body, to apply twice daily. I’m really hoping this helps curb the rashes, if anything the itchiness. It’s like chicken pox itchy minus the fever and viciously infectious parts.


My aunt from New York came last week to visit for a few weeks. She’s my mom’s youngest sister and it’s been really great having here. She speaks more English than my mom so having her to help explain things at doctor’s appointments has been super helpful, along with how she tempers my mom’s crazy when I cough or sneeze or basically do anything other than eat or sleep. It also helps that she lives in a major metropolitan area so she’s more equipped to navigate urban areas better than my mom. I’m really grateful that she’s here. 🙂


Over the past two weeks, I’ve been Christmasing like crazy, decorating the apartment with enough holiday cheer to keep it festive but not getting too crazy. Also, Amazon Prime is my best friend. Since I can’t be out in crowded public spaces (more than 4-5 people in one space), I’ve been doing most of my shopping online. I’ve seriously been getting at least one package a day for the past week and a half. Probably not the most eco-conscious way of shopping, but I’m recycling all the packaging materials!

Other things I’ve been getting because Ricky will FaceTime me, say, at Target, to pick up a few things you just can’t quite get online. I’m definitely in the “holiday” spirit, but judiciously and sparingly listening to holiday music. There are still 18 days to Christmas. I hope I don’t lose steam too soon!

Day +34: Decembrrr.

Day +34. The counts continue to steadily rise. Hemoglobin is 10.8 g/dL (!), platelets at 127 x10^9/L, neutrophils at a steady 0.99 x10^9/L, and lymphocytes at 1.59 x10^9/L. These are great numbers. These are happy numbers. I think I should be in the normal range for everything by the turn of the new year. 2016, come at me.


It’s December 1st. World AIDS Day, #GivingTuesday, and the day in 1955 when Rosa Parks refused to give up her seat to a white man (60 years ago! And we’re still dealing with blatant racism! And sexism!). Reflecting on these celebrations, these events has helped remind me that there is so much more going on in the world beyond the four walls of this mom-enforced-house-arrest apartment.

They remind me that there is so much hurt and pain and suffering in the world that are bigger than the hell of a year that I’ve been through. They remind me of all the work that is left to do, all the minds there are to inform and enlighten, all the hearts there are to touch and open, all the scientific progress there is left undone. They remind me, inspire me, charge me to look deep within myself (and, of course, during this time of convalescence) to see what it is that I can do to make this world just a little bit better.

It’s been a long time since I’ve thought of these things, 13 months to be exact. Right before everything started to get really serious with the aplastic anemia, I was on a speedy trajectory to “doing something” with myself, to making a difference. I had grand plans, big ideas, and a full heart ready to give as much as I could to a cause I really believed in. But life has a funny way of slowing you down, stopping you in your tracks, and making you readjust your plans.

So, as I sit here in bed letting my body rest and slowly rebuild itself, while my cognitive abilities are dusted off and are reawakened, while I try to stay warm in the frigid SF weather (it was a low of 47 today; that’s cold!), I begin to think about what this life, in it’s new and unexpectedly changed form, will be. As much as I wish I had the answers now like my 22 year old self did, I know better. I know, now, to wait. To be more patient, to be more kind, to be more forgiving both to myself and others. The right things will happen in their appropriate times. For each day is a victory, and each week is progress.