Day +32. My counts from my appointment yesterday are all in the normal range except for my red blood cells and lymphocytes. So insane! I don’t know how they climbed so quickly! Neutrophils, white blood cells, platelets, all in the normal range. The RBCs usually take a while to get back to normal, but each week they are increasing slowly. The lymphocytes (T cells, B cells, NK cells) will take a while to come back too as I rebuild immunity to everyday antigens or pathogens.

The CMV viral load is about half of what it was last week, which means the meds are working well. I imagine I’ll be out of the “dangerous” range later this week. But I’ll have to continue on the antiviral meds for another 4 weeks just to make sure it doesn’t come back guns a-blazing. I still have the annoying congestion but the cough is better and the mucus is thinner and less abundant. Yay for getting better!

I’ve slowly been regaining energy as well! I try to make a goal to walk to a different spot in the city (and back), to different parks, cafes, etc, just to break up my routine and sort of feel normal again.

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Sometimes in life, you’re disappointed by people you most rely on. Sometimes your own family members are the ones who disappoint you. Sadly, this is the case for me. For reasons I’d rather not discuss here, my dad decided to leave to go back to Texas. I spoke with my NP asking if I really need a 24/7 dedicated caregiver since I’m self-administering meds, can make my own food, and can take cabs to my appointments (since I still can’t take public transit). For him, he thought it was okay but he would have to get the okay from the care team before giving an absolute green light. Until then, my friend Graham has graciously offered to be my temporary caregiver helping where he can and where I need any assistance. But let’s be real, I’m more than self-sufficient to be able to take care of myself.

I’m very saddened by this turn of events, but it was clear that my dad wasn’t comfortable here and after talking to my sister, he felt like he didn’t know how to take care of me. Whatever his reasons, I’m incredibly disappointed and really hurt, heart broken even. I understand and empathize with him so I’m not mad, but that doesn’t take away the pain and sorrow. I know it’ll pass, but until then I’ll just keep carrying on receiving support from my amazing friends and “chosen family.”

I’ve said this time and time again, but when life gives you lemons, squeeze out the juice, mix in some gin, simple syrup, and champagne, and enjoy yourself a nice French 75!

Day +27. My counts are all slowly on the rise! Woot! Oh, happy day. (OH HAPPY DAY). If we keep this up, I’ll be recovered to normal levels in no time!

I told my NP Derreck about the narsty yellow mucus I’ve been coughing and hacking up, and he flashed me a look of concern. He then promptly sent a prescription for a Z pack (azithromycin, a common antibacterial) to my local Walgreens. Derreck’s the best. 🙂

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It’s amazing how much better life is when you stop trying to jump from the bottom to the top of a mountain, and instead take steps along the side. Less bruises and cuts, and much less failure. Reaching my tangible, daily goals has really helped boosted my esteem and overall happiness incredibly. Such a simple solution to bothersome problem.

Today I completed a 16-page arrangement of Everybody Knows by John Legend for seven voices for Resound Ensemble, the group I sing with in SF. I love this song and have always wanted to arrange it. I’m very happy with how it’s turned out and can’t wait to see it performed!

P.S. The music video is a bit dated. I mean, look at the cell phones! No touch screen? 😉

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A snapshot from the top of Kite Hill in my neighborhood from my walk this afternoon. I love this city!

Day +26. I found out today that, based on my blood work from yesterday, I tested in the positive range for cytomegalovirus (CMV) infection. CMV is a virus similar to Epstein-Barr virus (EBV) that causes infectious mononucleosis (mono), with similar symptoms. Prior to the transplant, I had CMV immunity (I got it from somewhere?). My donor however didn’t, so the marrow I received was CMV- for immunity. Often times in situations like these (being immunocompromised), the CMV can get reactivated and can cause a lot of complications, which is why they test very carefully for it. Thankfully, they caught it before it got too out of hand and my NP swapped the antiviral medication I was taking to one that’s more specific for CMV — valganciclovir (aka Valcyte).

I think this helps explain, aside from my lowered counts, why I’ve been feeling so crappy lately. The extra fatigue, cough, running nose, body aches, narsty yellow mucus. Definitely makes me feel like less of a whiney brat. 🙂

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April 1st. The day of fools. For me, it was a day of starting fresh, starting new. I was tired of feeling sluggish, out of shape, and trapped at home so I’ve resolved to walking 5,000 steps a day (thanks for keeping track Fitbit!), following The 30 Days of Yoga with Adriene for… 30 days (shocker), and making small, tangible, daily goals that I can accomplish to fill my days (e.g. organize my closet, make birthday cards, clean my room, baking something, read a book, etc). I think my approach to this whole period of recovery was wrong from the start. I was definitely trying to the tackle the whole mountain at once instead of making small, daily progress. Basically, I was setting myself up for failure over and over again, which is why I found myself so frustrated, upset, and defeated.

So, I’m “pressing the reset button” and taking the approach I should have had from the beginning. Small, achievable steps towards the top of the mountain every single day. It’s going to be a long, bumpy road, with hiccups and mishaps along the way, but there’s only one way up and I’m determined to get there even if I have to fight tooth and nail for it. Lucky I have great hiking gear.

Day +25. At my appointment yesterday we found out my counts are dropping, except for the platelets which are oddly increasing. My neutrophils were low so I got a shot of Neupogen, and my hemoglobin is trending downward — I might need a transfusion in the near to distant future if it doesn’t pick up. All of this isn’t out of the ordinary and isn’t a cause for alarm. They should all begin to start picking up soon though. I hope. This helps explain why I’ve been increasingly tired and fairly irritable as of late, hence why I haven’t been writing much. If you don’t have something nice to say… That and nothing interesting has been happening other than me sleeping a ton, gaining weight (which all the nurses say is a good thing? but I’m irritated by it), and going from show to show aimlessly, mindlessly binge watching things, which I believe is a big source of frustration since I feel like I’m wasting my time.

One of my dearest friends Monique told me that you have the option to press reset every morning when you wake up, and you can reset your attitude to a positive one. I am a firm believer of that ideology, except it’s only after I’ve had some Tylenol and oxycodone that I can even begin to reach for that reset button.

Good days and bad days. My current daily battle. Will today be a good day? What determines if a day is good? Is there something inherent about the day itself that determines it’s goodness or badness? My mood? My pain level? My bowel movements? Level of productivity? With what moral lens am I examining these days to determine their goodness factor? I suppose at the end of the day it’s all subjective, right? So that means a subjectively bad day can be as subjectively good, no? Which means that this concept of good vs. bad days isn’t an absolute. Thus on my bad days, I’m equally having a good day if I allow myself to see it that way, and vice versa. Food for thought.

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This is my second week out of the hospital and things are going pretty well with my dad taking care of me. We had a really good story time sesh today where he basically told me his whole life story — something I’ve been waiting my whole life to hear! (Twenty six years is a long time to wait, dad. Geez.) My dad’s a man of few words, so he doesn’t say anything that isn’t necessary. To hear his version of his plight and more importantly his reflections on life was a real treat and really gave me a lot of perspective in one of my darkest hours. Be strong and persevere.

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Next week around day +30, I’ll get to find out the exact amount of chimerism that exists in me currently. That is, for the non-science folk out there, we’ll be able to determine how much of me is my donor and how much of me actually remains. I’m suuuuuper excited about this!! (Naturally, being the nerd that I am). I can’t wait to find out! 🙂

Up until now, I’ve mainly blogged about my progress, visitors, things that have lifted my spirits, some thoughts, and Adam. There’s one thing I haven’t been completely honest with ya’ll about — this whole thing is hard af.

I’ve left out all the times I’ve cried myself into a pounding headache, covered in snot and tears, because of how scared and frustrated I’ve been. I’ve forgotten to mention not mentioned all the times I’ve pounded pain pills like it was my job because my brain felt like it was just seared on a hot cast iron skillet, temporal lobe-side down (unrelated to the crying). I’ve failed to include the constant bombardment of thoughts like, “What’s the point? Why am I even bothering? I hope this doesn’t work so I can stop worrying about everything. When will I ever be normal again? When will the throbbing stop? I’m so insanely jealous of everyone out in the world right now able to enjoy this gorgeous day. Will I ever be healthy enough to go running again? Etc.”

People have been so encouraging, telling me that I’m inspirational and that I have such a good attitude about everything. Truth be told, I don’t feel like I do. I keep pressing forward because, well, what else is there to do? The only other option is to die, and that’s too selfish. I sugar coat responses to questions like, “How are you feeling? How are you doing? Is everything okay?” because I don’t want to rain on anyone’s parade with the brutal truth. If I don’t have hope, how can I expect anyone else to either? It’s a vicious cycle, and it’s entirely exhausting.

Each day I wake up with a choice: a choice to win the day or to lose the day; a choice to do something with myself that I’ll be proud of or to do nothing. Lately, I’ve been losing a lot of days (e.g. doing nothing) and I’ve been extremely frustrated. No one ever teaches you how to beat your mind at its own games (a hard lesson to be learned). I know I’m supposed to be resting, but how much rest do I really need? How much rest until it tip-toes over to just being lazy? (Pardon me while the overly ambitious Min steps in for a second).

I shouldn’t be pushing myself. I shouldn’t be stressing about anything. My main focus is the recover and let my body heal. But I can’t shake the feeling that I’m wasting my time, that I could be doing something more productive. My friends get mad at me when I talk about this because they know me and know how driven I am to get things done. They harp about how I need to slow it down and really just focus on recovery. I guess the transplant didn’t change my personality one bit — my mom swears up and down that it will (see: Korean stereotypes, blood type personalities.)

I guess the take home message here is that this whole process is teaching me patience. Yeah, the virtue. For an on-the-go kind of guy, this is really hard for me, but I guess the universe *really* wants me to learn it so, here we are.

Day +20.  Energy levels are still fairly low. My blood counts are low, but stable! I’m not making anything, but more importantly I’m not losing anything. On Monday, my doctor lowered the dosage of one medication (a really good sign), and took me off the IV magnesium (huge time saver!). All in all, just hanging tight and passing the time patiently.

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I’ve been falling into a new schedule since coming home. With all the medication timing, I’ve been finding a “new normal.” (Nothing like the Ryan Murphy show).

8:00AM – groggily wake up, pop first round of pills, take blood pressure and temp, take tylenol and oxy to ease body aches
9:00AM – eat breakfast, pop second round of pills, shower
9-12:00PM – binge watch a show or nap
12:00PM – each lunch, pop third round of pills
12-3:30PM – continue binge watching a show or nap
3:30PM – snacks on snacks, pop fourth round of pills, take blood pressure and temp, take more tylenol and oxy to ease body aches
4:00PM – take a stroll around the neighborhood
6:00PM – eat dinner, bicker with my dad
7:30PM – Facetime with my family back in Texas, get yelled at my 20-month old nephew to go “bye” so he can watch Bubble Guppies on the iPad
10:00PM – pop fifth round of pills
11:00PM – promptly PTFO

It’s all pretty uneventful, but for my tired self it’s enough to keep me busy. I have to keep reminding myself that I’m in an important recovery period (the first 30 days post transplant), and that I have to be patient with myself, and that I can’t expect to go back to being fully healthy immediately, and that I have to be patient with myself. It’s super frustrating for me, a person who was super-hyper-functional and independent before all of this started happening, to sloooooow my roll and take my time. If I haven’t learned the virtue of patience in my lifetime, I’m definitely learning it now (spoiler alert: it’s not that fun).

I really have no room to complain though. I’m staying relatively healthy and I have no GVHD thus far (thank the sweet baby Jesus). My dad has been more than accommodating and helpful, even if he doesn’t really understand everything all the time. My roommates have been more than supportive. I have friends who constantly check in on me and continue to surprise me each day with their love and support. I’m one lucky guy! I’m just hanging tight until I can get back on that horse and keep riding along! 🙂

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Me and the pops walking around the Castro. The Castro.

Well, I’ve been at home for a full day now and let me say, it is such a bittersweet thing. Let me break it down for you.

Pros:

• I get to sleep in my own bed. 🙂
• I get to sleep through the night without being woken up for mid-night vitals.
• I get to be back in my own space, adorned with my things.
• I get to breathe outside air and feel the sun on my face. 😀
• I don’t have unexpected people constantly popping in and out of my room unannounced (e.g. nurses, cleaning staff, etc.).
• I get to enjoy the gorgeous view of SF from my porch.
• I get to bake in my own home!
• I don’t have to pee in a jug and record the volume anymore.

Cons:

• I can’t go out into public spaces.
• I can’t eat restaurant food until my doctor gives me the okay.
• I still have little to no energy to do anything.
• I don’t have HEPA-filtered, UV treated air flowing in my room constantly.
• I have dietary restrictions.
• I can’t bake any breads with yeast. 🙁
• I’m on a complicated medication schedule that has me taking meds 5 different times a day, which all have to be timed carefully with what I eat and how recently the last medications were taken.
• I have to flush my Hickman lines daily. It’s a big ordeal.
• I have to self-administer magnesium sulfate, IV. It takes two hours. No fun.
• Trying to make my house more sterile, clean, and infection-proof with my dad.
• Having my dad wait on me hand and foot.

I could go on. Needless to say, the cons list totally outweighs the pros. So while I’m glad to be home, there are so many more things to worry about and consider that almost make it not worth it. Regardless, I shouldn’t be complaining because I’m recovering faster than expected and I’m making great strides. I guess this is just another exercise in patience and perseverance.

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Life at home has been pretty busy. Like I said, I’m on a pretty complicated medication schedule. I’m taking 7 different meds, each with different restrictions and timing requirements, and 1 IV drip of magnesium. Two of the drugs have to taken on an empty stomach (e.g. 1 hour before a meal or 2 hours after a meal) and they can’t be taken within 2 hours of any magnesium oral or IV, one drug has to be eaten with food, the magnesium IV drip takes two hours, one drug has to be taken once every 6-8 hours, other drugs have to be taken once every 12 hours, and one drug is only to be taken on the weekend once every 12 hours. Thank God I’m a planning guru and I’m able to figure out a consistent, working schedule. Otherwise I know I’d feel like I was drowning. My poor dad sure felt that way when he first got the drug list, but I reassured him that I would take care of it all.

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So I’ve been busy. Busier than I want to be. Once I settle into a routine and start regaining energy I know I’ll be able to sprinkle in a fair amount of baking and other fun activities. It’s just a waiting game for now.

P.S. The alopecia is still happening. Despite all of my attempts to avoid the “patchy head” look, it’s inevitable. Oh well. I spend a solid 5-10 minutes in the shower everyday rubbing off all the hair I can. I just can’t wait for all of it to fall out.

Bye 1159. It’s been real.

Well, today’s the day. I’m finally going home after being in the hospital for 3 weeks. There aren’t enough words to explain the whirlwind of emotions I’m feeling as I take another (huge) step towards regular health! I’m not going to lie, as much as it felt like I was stuck in a jail cell (with a phenomenal view), I’m really going to miss the amazing nurses and staff, the fantastic room service, and HEPA-filtered, UV-treated air. But alas, every good thing must come to an end.

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My dad got into SF yesterday. He drove more than 17 hours over two days to get here in time to get settled and rested before the big task that lies ahead. Today he (and I) will be getting trained on how to deal with my Hickman, my medication schedule, general infection prevention, and food preparation guidelines. There’s a whopping 3 hours blocked off where an NP (and translator, just to make sure my dad gets everything) will guide us through all the information. I have a few questions like: when will I be well enough to go shopping, in public? (Lord knows I’ve been binge online shopping this whole time). And, how soon can I eat Tartine pastries again? Clearly high priorities. Obv.

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I’m super excited to be able to go home, but I carry a good number of reservations about being outside of a closely monitored environment. I share a three-story Edwardian home with 4 other roommates. What happens if I catch something someone brings home? I am still immunocompromised after all, and it’ll take a few months before my immune system is fully up and running. I really want to avoid getting some kind of infection. *LOTS OF PARANOID HAND WASHING*

What happens if I’m not well enough to self-administer my medication? Let’s be real, I’m gonna take care of myself to A) alleviate stress from my dad, and B) gain some sense of independence again. So in the event that I have to rely on my dad to flush my Hickman lines, etc. will he be comfortable enough to do it? (He gets really freaked out about serious medical things pretty easily. Go figure. Half of my gene pool.) I know I shouldn’t sweat the small stuff and I know everything will be great in the end, but I can’t stop the crazy part of my brain from going there. I guess this is just another thing I have to submit myself to and trust will be okay. Patience really isn’t my strong suit.

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Guys, the alopecia came in full force yesterday. I hadn’t noticed it until I was rubbing my quickly growing hair and an impressive number of 1/2″ strands were stuck on my hand. Ohhhh did that trigger the crazy Min. I went. to. town. on my head. Rubbing, pulling, tugging, pulling, pulling, pulling, rubbing. I have this crazy idea that the sooner all of the hair falls out, the sooner it’ll come back in. I know that’s not true, but crazy Min is now resident in my head and he can’t be convinced otherwise. Does he think rationally, taking into consideration how long it’ll take the new hair follicle cells to regenerate? Nope. Does he think about how long the chemo treated cells take to die? Nope. He just wants all of the hair gone. Gone, gone, gone.

I must admit, it’s peculiarly addictive pulling the hair out. Sort of like picking at a scab or tugging at a hang nail, but much less painful. Every hour or so my hands will scan my scalp rubbing out as many loose hairs as possible, and then I’ll systematically tug at every single area of my head to extract all of the remaining loose hairs. I’m seriously amazed at how much hair is on my head. It never stops falling out!

I think I’m also OCD about getting all the hair off my head because I’m trying to avoid the patchy scalp look. I know, I know totally vain and purely cosmetic, but if I can avoid it, I want to. Crazy Min be cray.

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Oy, this mixed bag of emotions. A roller coaster of mostly highs and a few lows. Mainly excitement, overwhelming gratitude, and gleeful anticipation, with a tinge of anxiety and paranoia. I’m feeling all of the feels!

Today, I had the chance to have a really good conversation with my day nurse, Hannah. She is also a 26 year old Korean American. We chatted commiserated about being raised by immigrant parents and talked about how so few Koreans register for the bone marrow registry. One of her friends told her that apparently there is strong superstition against sharing marrow which deters people from registering. I think there’s got to be a good amount of fear and lack of education mixed in there, too. Our conversation lead us to talking about setting up a bone marrow registering drive sometime in the near future. It’s not too difficult to coordinate. We talked about where and how we could target asian, specifically Korean, populations since there is such a dire need for more minorities in the registry. Churches were our first target places (Koreans *love* their religion). But also markets, schools, and bars. I volunteered to be a living, breathing example of how volunteering for the registry can save someone’s life. We exchanged information, and I’m super stoked to get this off the ground once I’m well enough.

Another plug: if you haven’t already joined the bone marrow registry, please please please consider it. You don’t need to make any commitments by registering. Even if you do match with someone, you still have to option to decline. At each step of the process, you have control in making your own decision. You can order a kit to be sent to your home here, and all you send is a mouth swab. That’s it! Super simple, super quick, and you could save someone’s life one day! 😀

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Day +14. My white blood cell counts are starting to level off, while my hemoglobin and red blood cells continue to decline. I asked my doctor about it and he said that the RBCs are one of the last cell types to bounce back. He also said to expect my WBCs to decline by 50-60% when I leave the hospital, but not to be alarmed. The boosted WBC counts are due to the Neupogen shots I was getting to help stimulate the WBCs. My natural WBC should pick up pretty quickly after that dip. I’m hoping for a speedy recovery while at home, but I’m still playing the long game. Like golf. Which I’m horrible at.

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It’s been real Adam. I can’t say I’ll miss you too much, but I’m grateful to have been with you through your amazing weigh-loss transformation. Be well. 🙂

Dear friends,

Hello. Thank you for taking the time to read this public service announcement.

Check your health. And check it annually.

This entire experience has really opened my eyes to the importance of maintaining good health and an open relationship with a primary care physician (PCP). Had I had not gone in for a regular check up where lab work was done, they never would have caught the aplastic anemia and I could be dead right now.

So I beg you, please stay on top of your health. No one is going to do it for you. You have to do it for yourself.

There are normally a few barriers that people don’t get over when dealing with their health such as:

1) Being afraid of what they’ll find out.
This is not a good excuse to avoid having an annual checkup with your PCP. Wouldn’t you rather want to know you have stage 1 cancer, begin treatment, and nip it in the bud, instead of denying any pain for some time to find out that since you waited so long you now have stage 4 terminal cancer? Who wants that? Who wants to put their friends and family through that? Granted that’s a worst case scenario but it happens more frequently than you think. Knowledge is power people. Get with the program.

2) Not knowing about/taking advantage of company provided insurance.
I’ve found that more and more of my peers (20-somethings) have never taken advantage of health care provided by their company. This… this infuriates me. What’s the point of having healthcare provided to you by your company, healthcare that you’re paying for out of your paycheck, that you’re not using? It makes no sense. I’ve heard the excuse that it’s “really complicated” or “it doesn’t make sense.” Again, poor excuses. If you don’t know about it or it’s confusing, ask someone about it. Why do you think HR exists? Hell, ask *me* about it and I can give you a very clear break down about the difference between HMOs and PPOs, what exactly a “deductible” is, viable and reasonable insurance options available federally or by your state, and realistic costs for care. I’ll even help you find a PCP in your area. I cannot stress enough how important it is to have health insurance and to use it.

3) Not having/being able to afford health insurance.
This is a little more difficult to get around given one’s financial situation. But even still, there are very affordable insurance plans that are available for people of all tax brackets and age groups. You could argue up and down about how expensive it is, and how it’s not worth it, but in reality it is. You never know when an unexpected emergency will happen and you’ll find yourself in the ER. Nobody wants to have a surprise hospital bill of a couple thousand dollars. A few hundred a year could save you tens of thousands a year.
A simple Google search for “health insurance” will bring up a good number of places to start. Under the Affordable Health Act, you actually get a tax penalty if you’re not insured. So do it. Get insured. And use it.

4) Being to busy to deal with the hassle.
Don’t even get me started about how stupid of an excuse this is. Really.

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So, I guess the point of this PSA is:

Check your health. And check it annually.

Your health is the number one, most important thing you have control over (for the most part). Some genetic conditions are just unavoidable. Even in those cases, you should be on top of your care. The reason why I’m harping so harshly about this topic is because you are precious, so incredibly special, and important in this world. You should value yourself not only through your existence and contributions to the world, but also by taking care of your body. You only get one shot in this lifetime. Why make things more difficult for yourself by not taking care of your body? Be good to yourself.

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Day +12. My white blood cell counts and neutrophils have doubled again! The counts are in the normal range now, and I’m actually well enough to go home today, but we’re waiting for my dad to get here before I’m discharged. I must say having an intact immune system is amazing! I have so much more energy, I can actually think, and I’m able to do more than just lounge around feeling bad about binging Netflix all day. Guys, today is a wonderful day. 🙂