Day +524: #year29

Day +524. We’re about 18 months post-transplant and I’m happy to report that all of my blood counts (white blood cells, hemoglobin, platelets, etc.) are back in the normal range! They have been for a month or two now, but life has been so busy I haven’t posted in awhile (sorry guys!). I just got my 18 month vaccination — a 23 valent pneumococcal polysaccharide vaccine (PPSV-23) which helps immunize against streptococcus pneumoniae. Woot!

Today, I celebrate my 29th birthday. One that was never guaranteed, from the moment of conception through 23:59:59 last night, but was made possible by the wonderful marvels of modern medicine. I am incredibly grateful for reaching such an astonishing milestone — the last year of my 20s.

Reflecting on this, I’ve thought long and hard about how to make the most of this penultimate year of such a life changing decade. Should I: start a new diet, commit to running more hours a week, volunteer more, bake more, travel more, etc? Through all of these fleeting thoughts and conversations with friends, there’s always been one thing that has remained — keep living life. As simple as that. No more, no less.

At the cost of sounding cliche, let me repeat it: keep living life. If there’s anything the entire experience of severe aplastic anemia (sAA) and two transplants have taught me, it’s to keep forging your path forward. Such a simple concept that’s said so often and sometimes not fully understood now deeply informs how I live everyday of my life.

There was a period in the past few months where I was rageful, bitter, and frustrated, to say the least, because of how much sAA had stolen from my life and how much it had affected the lives of people around me. I would have bouts of white-hot, seething, vengeful anger. I’d be lying if I said I still didn’t get angry from time to time. These emotions, however, are living. It took me a long time to realize and accept that the capacity for and ability to feel anger or frustration meant that I was alive. I am alive. Facets of my being, my humanness were indeed back and in full force.

I’ll admit that I wish joy and happiness and contentment were the major conductors of this train (thanks Inside Out!), but that wasn’t my reality. I’ll also admit that practicing gratitude on a daily basis makes for a generally calmer and more content existence, which is something I strive to do more regularly. But the range of emotion, feeling every last nuanced bit of it, is a reminder to myself that I’m alive. I’m here. I’m thriving.

So let a transplant-survivor give you a little advice: don’t stop fighting and do what makes you happy. There’s no better person to be who you are or to do what you do than you. Keep living your life. It’s really worth it; I promise!


In accordance with this new hold on life, I’ve been up to some fun things the past few months. In January, I celebrated the union of two of my favorite people Chris & Danika in Costa Rica! It was such a fun trip and I saw a real life manta ray while snorkeling! (Yes, I did get medical clearance from my care team and had to get a lot of preemptive travel shots before I left). We had a blast for a week exploring the beautiful western side of Costa Rica and partying like we were 21 again. 🙂

I also recently got back from a trip to Paris & London to visit my friends Ryan, Tommy, and Tea. In just two week’s time, Ricky and I managed to pack in as many sights to see and things to eat as humanly possible. Would I go back ever again? ABSOLUTELY. 😀

Till the next time (hopefully sooner than 6 months!), be well, be safe, and thrive.

Day +366: Happy Re-Birthday to Me!

Day +366. Today is my one year post-transplant anniversary; my first re-birthday, if you will. Today is one of the biggest milestones in a transplant patient’s life, and I’m so grateful and excited to be celebrating this important day.

When I reflect back to a year ago and think about how far I’ve come, I’m stunned by the fact that a whole year has come and gone. So much has happened between then and now, and so much has changed. Little did I know exactly what was in store for me during this arduous recovery process. Despite having had a bone marrow transplant once before, I didn’t make it out this far in recovery to have had the distinct pleasure of unearthing the stingingly complex and frustratingly unending aftermath of emotional havoc left behind from enduring sickness and intense treatment of one’s body.

I’m proud (and relieved) to say that physically, my body is doing great! I received the third round of immunizations with, in true infant format, two rounds left at 18 and 24 months post-transplant. I’m continuing to get phlebotomies when I visit my care providers to keep lowering my iron count. I’ve been bumped waaay down to one doctor’s visit every two months. Contrast that to twice a week! My health overall is past the drastic, steep increase back to normal, and is now on cruise control with a steady incline towards better health.

The bane of my struggles these days has been primarily emotional and psychological. Having to come to terms with one’s mortality while life keeps whirring on without you isn’t something that’s easy or quick to resolve. Thankfully with the help and support of Ricky, some pretty amazing friends, and my therapist, I’m getting through this phase of recovery.

So. What’s next?

The short answer is: I don’t know. Keep living life? Survive another day? Bake more cakes? What I do know is that I’ve been given the wonderful gift of time. Time to figure these things out; time to live my life. And for that, I’m incredibly grateful.

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From my surprise party last night! Put together by Ricky and the wonderful people in my life. ❤

Day +300: Are You There God? It’s Me, Min.

Day +300. 10 months post-(second)transplant. We’re here. We’ve made it. Still alive, still breathing. In some ways today’s milestone is more significant than say, day +100 or day +180 because today means that I’ve survived the equivalent of a normal gestational period for a human. My body, the one I was born with which isn’t quite the same now as it was back then, has lived through an entire pregnancy cycle’s worth of time with a completely new immune system. The implications of this are staggering. Sobering. Exciting.

I could spend the rest of this post talking about how I’m still recovering from the H.flu pneumonia and parainfluenza 3, which almost took me out for good. I could give my musings about how Ricky and I are moving in together this week taking a huge next step in our relationship. Or I could update you on all the things I’ve injected back into my life to try and gain a sense of normalcy and productivity in an attempt to give my “second chance” at life more meaning. But, I can save all those for a conversation over coffee or a beer. Today, I want to celebrate the people in my life because without the immense team of people who have supported and encouraged me the past two years, I know I wouldn’t be the (almost) healthy guy sitting here typing his thoughts in a somewhat coherent manner. I digress.

First and foremost above any friend or family member, my Ricky has been an unconditional, unwavering source of support during my darkest, scariest hours, and trust me, there have been a few. From being with me on many difficult hospital nights to helping pack and move me into and now out of my current apartment, Ricky’s been the brawn and human tissue through so many major highs and lows. I really don’t know where or who I’d be today without him. ❤

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I want to thank my wonderful SF family. My roommates Chris & Danika who have been so patient and supportive during my second transplant and recovery; Susie & David who are the most outdoorsy, goofy, and loving people I know; Connie & Alicia who are OG Bay Area friends & fellow theater lovers, respectively; Matt O. who always know how to snap me out of a funk with the best Asian food in the Bay and movie nights; Isaac who shares a love and appreciation for all the nostalgic things of our childhood + science; Ilana for her calming presence and unconditional acceptance, flaws & all; Ryan who continues to show me that you can love and pursue more than one passion; Matt C. who sure can throw a fun game night and is always up for Musical Mondays; the wonderful members of the Weissman and Walter labs at UCSF who have all been more than understanding and supportive of my recovery often times telling me to slow down and take care of myself; and so many, many other wonderful people! If I listed everyone this post would read longer than a Genesis genealogy.

I also want to thank my loving non-family family. Bekah with who I communicate without words, but primarily through music; Jenn C. who really is my sister from another mister and has been a constant rock through all of my adolescence and adulthood; Katie & Amanda who have been nothing but supportive and unconditionally loving; my friends on the East Coast: Momo, Steph, Brennan, Dimp, Jason, Steve, my Abbeys around the country – you guys have been the core foundation of a lot of my adulthood and miss you all so much!

This post is reading more and more like an Oscar acceptance speech, so I’ll end here, but you get my point. It really takes a village to both raise a child and support someone back to health! I’m so incredibly grateful for all the wonderful people I have had the pleasure of crossing paths with in life, and for everyone who has reached out and provided support to me one way or another. I’m humbled and honored to be able to continue on this journey. It’s been such a rollercoaster of an adventure with so much more yet to come! #wintheday

Day +282: Homestretch.

Day +282. Sixth day of fighting off this sickness and I think we’re finally making a breakthrough! Here’s a quick update of the past few days:

I was discharged on Tuesday, after being in the hospital for 4 days, with diagnoses of haemophilus influenzae (h flu) in my lungs aka pneumonia, and human parainfluenza 3 (HPIV). H flu is a bacterial infection that normally affects children, the elderly, and the immunocompromised so it comes as no surprise that I had it. Once the doctors were able to figure out I have H flu, they changed the course of antibiotics I was getting, et voila I began to feel better. Marginally. My doctors think the H flu was a red herring for the HPIV3.

HPIV3 is a viral infection that more often affects children, but also the immunocompromised, and often tags along with pneumonia or bronchiolitis. The only thing we could really do for this was to let my body work to fight it off. HPIVs are spread person to person by contact with infected secretions through respiratory droplets or contaminated surfaces or objects. The virus can remain infectious in airborne droplets for over an hour. I’ve been keeping myself cooped up in my room, coughing into tissues, constantly using hand sanitizer, and washing my hands to reduce the amount of viral particles that are floating around. Thankfully a good soap and warm water treatment will kill the virus, so handwashing has been crucial.

Today has been the first day since Saturday that I haven’t needed anything to help with fevers and body aches, meaning we’ve turned the page and are moving towards complete recovery. Kudos to my new immune system for ramping up the immune response and working so quickly! I couldn’t be more thrilled with how this sickness has progressed and the new graft is proving, again, to be a great one.

A huge thank you to my Ricky for being with me during most of my hospital stay and getting me soup, tissues, and gummis to brighten my day. :*

Day +277: A twist in the plot!

Day +277. Hi there. It’s been a while. Idk if you remember me, but I’m the guy who randomly got severe aplastic anemia two years ago and received a bone marrow and stem cell transplant last year. Yeah, that guy. I realize it’s been a hot minute since I’ve last written, but that’s because I’ve been trying to live life as normally as I can. My body has been stable, counts are stable, we’ve officially stopped the immunosuppressive regimen (Cyclosporine if you recall) and will be stopping some other drugs in two weeks, we’ve been continuing phlebotomy every two weeks taking 1 unit of blood to lower my iron overload (from all the blood units I received last year), and I’ve been trying to get myself back into to shape!… Okay, maybe I haven’t been doing that last one very well. Either way, things seem like they’re on track!

Rewind to two weeks ago: I woke up with a scratchy throat which persisted for two days, and on the third day the scratchy throat was gone but I had full blown sinus congestion for two weeks. I was taking Sudafed religiously hoping it would pass, and never once did I have a fever. Until yesterday. Sometime in the afternoon, I was shivering and burning up, spiking a fever at 102.5! So, I did what any good transplant patient would do and called the clinic to see what I should do. I was advised to go to the ER.

Thanks to my lovely roommates Danika & Chris, I was able to get to the ER in less than 10 minutes. After being shacked up for 6 hours, during which time they drew labs, gave me some meds, collected a few samples, and took a chest X-ray, I was admitted to UCSF Parnassus for a bacterial pneumonia. Yep, that’s right. I caught pneumonia (sooo less exciting than catching Pokemon). The X-ray showed a bit of cloudiness on my lower left lung. How this happened, I’m not quite sure. I think after getting my second round of immunizations two weeks ago, my body was weakened from recovering from the shots and a little bug crawled right in!

Anyway, I’ve been doing alright so far. The biggest pain has been trying to alleviate the body aches I get whenever I spike a fever. I’m on a doxycycline and zosyn (piperacillin & tazobactam) antibiotic regimen while taking tylenol for fever control and oxycodone for body aches. I’ll hopefully be able to go home tomorrow, but it all depends on how I fare tonight. I’ll keep you guys posted!

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Meet Brenda! Adam & Steve’s cousin. She’s much less rambunctious and needy than her relatives.

 

Day +204: Welcome back, Me.

Day +204.

Two weeks ago I had my first round of phlebotomy: historically, the procedure of letting blood. We started this to begin alleviating the high amount of iron in my blood from all of the blood transfusions I received last year. Essentially, I’m “giving back” the blood I borrowed to stay alive. We only took 200g (roughly 200mL) of blood which is just shy of a whole unit, about 250mL. We wanted to start off with a lower amount removed for the first pass to see how my body would tolerate it. I’m excited to say that my body is doing just fine! Blood counts are stable, no light-headedness or headaches.

Beginning next week we’ll begin phlebotomy every other week until my iron count gets back into the normal range, which my guess will be about 6-7 units worth of blood to be removed. I managed to get a little clip of the blood collection. There’s nothing graphic, just a bag being filled with deep, red blood. 😉


The past few weeks have been, well, amazing. I’ve been back at work now for a month and it’s been so great getting into a routine again and using my brain. Just being able to use my brain has been so wonderful too. I’m really glad to be past the days of super foggy mindedness. With that, I’ve been biking to work, making plans with friends, cooking, and even baking! I’m proud to say I’ve slowly, but surely, been reintegrating aspects of my life pre-diagnosis back into the my life post-treatment.

This has been such a welcomed change of pace from the onslaught of unstable, wavering news I was getting week to week just one year ago. I’ve been continuing to process through a lot of the emotional trauma from the past year, as well as think about my future and what that means. I’ll be completely honest with you, having even the remote possibility to think about a future is a gift; it’s a gift one should never take for granted. It’s also a mood booster – take my word for it.

While I don’t have everything anything figured out, I’ve focused a lot of my time doing the things I love (e.g. dinner parties, exploring SF, seeing musicals – The Last 5 Years!!, going to museums and galleries) and spending time with people I care about.  *Cue snapshots from the past few weeks*

Till the next update, carry on!

Day +180: Milestones.

Day +180. I made it. We’re here. One-hundred and eighty days post transplant and the graft is stable, things are looking good, and life is slowly returning to ‘normal’. I look back to the last “day +180” from the first transplant and think about how differently things went this time around. Nothing quite sums up the relief, gratitude, and peace of mind I feel than, “Whew. It’s working.”


Other than day +180 being a huge milestone, a few other things have happened in the meanwhile.

I turned 28. Yep, I’ve officially entered my late 20s. To be honest, my birthday this year was pretty anti-climactic with day +180 being a few weeks later. Ever since having the transplant, major holidays and celebrations that once were important just aren’t as meaningful to me anymore. Because so much of the last 18 months had me on a tumultuous roller coaster of extreme highs and deep lows with blood counts varying week to week, the significance of dates and events shifted to health “wins.” That’s not to say I didn’t celebrate my birthday, don’t get me wrong. I was treated to a fancy, delicious dinner and trips to a few museums & Alcatraz by Ricky; had an amazing home cooked meal from my roommates; a relaxing afternoon in the park with the old BAL crew; a joint birthday shindig with Isaac; and a bunch of wonderful birthday cards and gifts from some lovely friends both here in SF and around the world. I think #year28 is off to a great start.

I returned to work. The wonderful people in the Weissman and Walter labs welcomed me with open arms this week as I came back to work. It’s be so wonderful getting to catch up with people, meet the new folks, and see how everyone has been doing. It’s been great getting back into a daily routine and having somewhere to be. I’m excited to really jump into a new project to get my brain juices flowing again. 🙂

I had my first round of immunizations. I’m as immune as a 6 month old baby! That’s right. This week, I got five shots which comprise the first set of immunizations for a stem cell transplant recipient, or infant. TDaP (tetanus, diphtheria, pertussis), polio, hepatitis B, Hib (haemophilus influenzae b), and PCV13 (pneumococcal conjugate vaccine 13). The shots didn’t hurt too badly, but my arms were sore for a few days afterwards. The next few months I’ll be getting more shots to help gain immunity against these nasty bugs. The worst part: I didn’t get a lollipop.


Overall, life is slowly getting back to normal as I’m reintegrating things and rebuilding myself. I’m excited for the next few weeks and all the exciting things to come!

Day +162: Stability.

Day +162. My counts are still stable with the HgB at 11.5 g/dL, WBCs at 4.5 x10e9/L, ANC at 2.18 x10e9/L, platelets at 143 x10e9/L, the latter three all in the normal range. My body still doesn’t seem to like making RBCs, but it’s doing the best it can with elevated reticulocytes (RBC pre-cursors) at 100.5 x10e9/L.

Overall, my health is good, stable. I’m currently combatting a few graft versus host disease (GVHD) things like skin rash (which looks like goose bumps, everywhere) and some other things that have popped up since I’ve been immunosuppressed that I won’t get into. Lately, most of my focus and energy has been dedicated to getting back into physical and emotional shape. I can’t say that any part of this process has been easy, but the past few weeks have been pretty tough. I know I can run 5 miles or work out for an hour, but my body’s not fit enough for it yet, and this disconnect is super frustrating. As with any person who is trying to get back into shape, perseverance and commitment are crucial to achieving one’s goals, but I’m having a hard time drawing a line between laziness and overexertion. So, I’m learning to accept my current state and to press forward.

I’ll be returning to work in about a week, and I’m pretty excited! I’m ready to get back to a regular schedule and start doing more productive things with my time and my brain. I’ll be returning full-time, and I’m confident I’m ready for it. Hopefully all the yoga and outside activities I’ve been doing have prepped me enough! 🙂

If you haven’t noticed by now, I’ve been posted much less frequently than before. My motivations for this are two-fold: 1) because my health is stable, there is less to update friends and family with online; 2) I’ve been focusing on spending more time and energy on myself whether it be going out for walks, journaling, or spending time with friends. I will keep writing updates periodically as my condition improves (or worsens!), but I won’t be writing weekly anymore. I would like to take this time to thank you, dear reader, for your interest and time in reading and keeping up with this epic saga. I really can’t express how grateful I am for you, whether I know you or not, for putting forth your energy and existence into the universe; it really has helped me more than you know.

 

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.

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. 🙂