Day +26: Giving of the thanks.

Day +26. All of my counts are still on the rise. My hematocrit has broken 30% and will hopefully continue upwards! Normally hematocrit (the percentage of your blood volume that’s actually red blood cells) should be between 40-50%. Plus, I didn’t need a neupogen shot today. I’m a happy camper.

Warning: this is a sorta long, not so happy post. Read on as you please.


 

This past week I’ve been dealing with a lot of really difficult, hard emotions brought on by the consistent reminder from my currently weak body that 1) I’m still sick, 2) I’m recovering very slowly, and 3) I can’t physically do as much as my brain thinks I can. [[Side note: I know I shouldn’t be complaining considering how well everything is going, but hey, I’m human and I can feel these things, thanks.]] Like, come on body, get it together. Walking three miles and going up and down 5-8 flights of stairs isn’t that hard, right? Okay, okay, I’m asking a lot of my body too soon. I get it. I guess I’m not as patient as I thought I was.

The things that have been getting to me the most though have been thoughts of what this sickness has taken away from me this past year. For starters, I’ve lost a year of my life. A year of birthday parties, housewarmings, celebrations, fun nights out, meeting new friends, cherishing old friends, dancing the night away. A year of work, scientific progress, plans for the future (this is a big one). You might be saying, “But Min, a year is such a small amount of time in the grand scheme of things.” Yes, you’re right. But let me explicate further.

A year of hospital visits, awaiting lab results to determine your fate, bone marrow biopsies (these really hurt), being pricked and poked and prodded, chemotherapy, total body irradiation, shots, more shots, so many days of fatigue and malaise, mental fogginess, chemo brain, the list goes on.

A year of anxiety, uncertainty, countless nights of crying myself to sleep, countless days of feeling nothing because to feel means to hurt and I’d rather not hurt anymore right now thanks, and all of the questions, “Why?”


 

You see, though, I’m a tough cookie. Ask any of my friends. (But I don’t bake tough cookies! Ba-dun-ch!) I can handle all of this. The physical pain, not a problem. Emotional hardship, I can do. The crippling, oh-my-God-this-is-real-and-I-can’t-do-anything-about-this-why-won’t-the-tears-stop-running-down-my-face, hits you below the belt pain, the true pain, for me, comes from knowing that as much as this has been affecting me, I can’t even begin to fathom what kind of toll all of this is taking on my loved ones.

A year of anxiety, uncertainty, countless nights of crying themselves to sleep, countless days of feeling nothing because to feel means to hurt and they’d rather not hurt anymore right now thanks, and all of the questions, “Why? Wait, what? How? What is going on right now? What do you mean another blood transfusion?”

I’m so incredibly lucky and grateful that my mom is here to take care of me. Despite her not fully understanding everything that’s going on, she knows one thing is true: feed and take care of my son and he’ll get better. So far, so good.

I’m also really fortunate to live in an apartment with amazing roommates and a guest room where my mom can live comfortably with her own space. Granted her and my rooms are right next to each other so sound seeps between the wall we share – there’s nothing more heartbreaking than hearing your mother’s muffled cries late at night. As if messing up my life for a year wasn’t enough, this sickness is wreaking unknowable amounts of havoc on other people. Wtf!?

Whenever I find myself in this thought hole, which has been happening more frequently recently, I have to trust that no matter what pain or hardship anyone is dealing with, they’ll get through it because that’s what we do. We press onward. Though I hate to cause any of this, they’ll survive. Because I’m surviving and getting better each day, there is a light at the end of the tunnel. There will be a day (hopefully soon) when all of this will be the past, and I’ll have encouraging stories to share with others over cups of tea or coffee and yummy baked goodies about this wretched, year-sucking, life changing experience that I quite frankly don’t even wish upon my worst enemies. And I’ll be grateful.

As for now, finding goodness in anything turns out is really hard to do when you’re dealing with a life threatening illness. But I’m trying my best.

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Day +19: Rising like leavened bread.

Day +19. I am thrilled to say that my counts are very much on the rise! Both red and white blood cells continue to track upwards in a steady fashion. My hemoglobin is 9.1g/dL — the highest it’s been since my last transplant! (Before the graft failed). Though I’m still anemic, we’re looking at a very good trajectory for the upcoming weeks!

My WBC count is in a normal range with all the appropriate sub-cell types slowly rising. I am incredibly happy and hopeful that this transplant has been successful and will continue to be successful! I’m also very grateful that I’ve only experienced a minor bit of GVHD. Fingers crossed we’re able to keep it at bay for the rest of my recovery.


 

A lot of my free time has been filled with binge watching Friday Night Lights, from the very beginning (there are 76 forty-five minute episodes; I’m on number 20). I can’t say I’ve been too productive this past week as I’ve been focusing on resting, but I’ve slowly been working to regain my physical stamina by walking and going up and down stairs.

Beginning this week, I’m holding myself accountable to a more regimented schedule of workouts. My goal for each day is to do 30 minutes of yoga, 15 minutes of basic exercises, and at least 5 flights of stairs. We’ll see how successful I am by the end of the week and if I need to adjust my plan.

Day +16: First days home.

Day +16. My counts are holding strong and some are slowly beginning to rise. Another day of great news from the clinic — my RBCs (and hemoglobin) have risen! Though my WBC count has dipped overall, including ANC and lymphocytes, I’m not worried. We’re still in a good range for WBCs and ANCs, and it’s encouraging the numbers are where they are considering I haven’t had a shot of neupogen in six days. Despite the drop in ANC, I’m still confident things are going well because the counts haven’t completely dropped out. The plan to keep doing what I’m doing is in store for the weekend, and we’ll see what my counts look like Monday morning.


I’ve been home for four days now, and it’s been quite a pleasant experience overall. I had some reservations about my mom being my caregiver, being in a completely new city and in a foreign space, but she’s done really, really well adjusting quickly. A lot of this is due to my amazing roommates Chris and Danika being so helpful and accommodating, making sure she has as many things as possible to help her feel more at home. ❤

I’ve said this before and I can’t say it enough, I’m the luckiest guy in the world. Not just because I found a second stem cell transplant donor and have, thus far, had a success transplant, or because I have an amazing support system world wide made up of people who are really concerned about my complete well being, but also because of how considerate and how deeply thoughtful all the wonderful people in my life are. I’m constantly in awe of the selflessness, generosity, and love that continues to pour out to me from friends, family, acquaintances, and strangers during this trying time. I’m just so, blessed.

Thank you everyone, truly, from the bottom of my heart. There were some pretty hard, dark days when I was in the hospital when I didn’t want to keep going. But remembering all the people who were rooting for me, hoping, praying, cheering me on, helped keep me grounded. I hope the worst of the days are behind me and I can focus on the better ones to come!


Living with my mom again, after almost a decade of living on my own, has provided a few minor challenges. We haven’t had a single fight yet, which is a good sign. Instead, we bicker. Like sassy old ladies. And we chat. Like gossipy old ladies. Basically, we’re a pair of old maids. And I’m okay with that.

Most of our conversations are about food. “What do you want to eat? What’s going to be for lunch tomorrow? Did you like dinner? What else should I make you? The soup was really good, wasn’t it? And for dinner, what do you want? What about this fish I bought? When are we going to eat it? There’s no room in the refrigerator; we have to eat all of this!” All in Korean, of course.

It’s been so great getting to spend so much uninterrupted, undivided time with Momma Cho. (I’m just as shocked as you are that those words are coming from me). Over the past few years, I know how much my mom has longed to spend time with the son she lost touched with since he left for college. It’s been calming and soothing to have my mom here to assuage and address all of my aches and pains, and to make sure I take my meds on time. There’s nothing like a mother’s touch to make the aches seem less achy, and pains seem less painful. Also, home cooked meals? Yes, please.


The first few days at home were actually pretty physically rough. I was battling severe fatigue, stiff and achy joint pains, minor constipation, a number of tongue and mouth sores, and muscle soreness. There was one day I was literally curled up in a ball crying because my stomach hurt so badly (on top of everything else) and who but my mother could come in and save the day to make me feel better.

Each day that passes, I’m feeling better and better, and gaining more and more strength. My stamina is increasing each day and my appetite is definitely getting better. My personality (read: sass) is trickling back and my mental cloudiness is clearing up quite quickly. Overall a positive prognosis so far. Looking forward to seeing how the next few weeks turn out.

Day +12: I’m going home!

Day +12. What a crazy few days this has been! From dealing with insane, whole body writhing bone pain (from the stem cells engrafting and growing in mah bones), to making sure my mom gets settled into my apartment (with the amazing help from my roommates Chris and Danika and my sister who flew out here for the weekend), I’ve had quite the eventful weekend! And now, today, I get to go home! Two weeks early!

The past four days I’ve been getting neupogen shots that have effectively acted to “awaken” the new cells that were growing in my bones. In my last post I had mentioned that my counts were on the rise, and boy did they rise! Just within three days, my absolute neutrophil count (neutrophils = the cell type that are the first line of defense against infection) went from <0.1 to 3.47 x 10^9/L today! My white blood cell count jumped from 0.1 to 5.0 x 10^9/L, and my hemoglobin and platelets haven’t significantly dropped at all (they’re usually the last two types of cells to come back in a transplant, so we should see them start rising in the next few weeks).

With these quickly growing numbers and because I live so close by in case an emergency were to happen, my care team decided that I could go home today. I’m excited! Mainly because I won’t have Steve constantly beeping at me, but primarily because I’m so ready to not have to eat hospital food anymore. Who doesn’t like their own mother’s home cooking? Amirite? Oh, and more independence. That’s nice too.

Anyway, my journey to recovery has just begun and I’m still in the very infancy stages of my new immune system, but I’m feeling good and I have enough strength to get back onto this recovery road quickly.

Oh happy day!

Day +10: This Pain Will Be Worth It.

Day +10. My counts are on the rise. I repeat, my counts are on the rise. What a glorious day! Today’s the first day since last Sunday, November 1st, where I haven’t had <0.1 x 10^9/L cell counts for my ANC (absolute neutrophil count), monocytes, eosinophils, and lymphocytes. This is great news people because this suggests that the stems cells have engrafted (to some degree), have differentiated, and are now proliferating in my body. I. Am. So. Stoked! All of this waiting is about to start paying off as we expect to see a sharp increase in cell counts over the next few days.


In other news over the past two days, I’ve been suffering from excruciating, throbbing pain in my lower back/sacrum area along with stretchy/itchy feelings in my femurs and other long bones. I know these pains mean that the marrow in these areas are expanding (!) and are hopefully being repopulatated by the new cells the stem cell transplant are making, but geezus, I’ve never felt such chronic incurable pain in my entire life, ever.

The pain in my lower back feels like I’m getting a bone marrow biopsy with every beat of my heart. It’s a throbbing, aching, jolt every second or so. The pain is so jarring it causes me to tense up, despite all of the pain medications I’ve been taking. Seriously unlike anything I’ve ever felt before, and it’s chronic. Hopefully it won’t last for too long. Despite all the pain though, I find solace knowing that pain = growing marrow = getting healthy again. There’s a light at the end of the tunnel! Eyes on the prize.


My mom arrives today! My sister is coming out with her for a few days to help her get settled in. My wonderful roommates Chris and Danika are going to get them from the airport and help them get settled in too. I’m so lucky to have such awesome friends who are willing to help out so much! This will be my mom’s first time in SF, her first flight in 20 some-odd years, and her first major metropolitan area since leaving Seoul in 1986. Needless to say she’s nervous (and I’m nervous too!), but I know things will be alright. After all, SF isn’t that scary of a city, minus the ridiculous rent, rampant sidewalk feces, and glute busting hills. This should be a fun mother-son bonding experience, I think.

Day +8: The Song of My People.

Day +8. Counts are still zeroed out. Getting platelets today because that count dipped too low. Got RBCs yesterday because I was super anemic. Began neupogen shots yesterday (and will continue daily) to “awaken” the “new” “immune” “system.” Don’t judge me for being snarky. My patience is running dry.


Aside from combatting the daily boredom, often by watching movies and TV, and useless internet surfing (who even says that anymore?), I’m glad that I’m feeling so much better than last week. There is a lingering nausea, however, that makes each meal a chore and taking every medication labor intensive — but I’ll survive.

I’ve reached the point where hospital food is very unappealing and I struggle to find things on the 8-page menu to stomach for each meal. Honestly, all I really want to eat right now (and until this ravenous craving is satiated) is Chinese take out. Or Korean food. Shoot, I could go for some Pho too, with some Pad Thai thrown in. I’m. craving. flavor. And by “flavor” I really mean umami, the fifth taste. Everything I eat is so bland, and simply adding salt doesn’t make it better. It just makes it salty. Different than umami. I’m asking for a friend.

But alas, I’ll have to wait until I’m no longer neutropenic before even beginning to think about outside foods entering this eager mouth. This could be a few days, a week, a few weeks before it actually happens. Until then, I’ll be cooped up in my hospital room throwing shade at clips of mukbang celebrities as my stomach growls. I digress.


Steve has been quite the nuisance lately. I think he has a chronic attention hogging disorder. He can’t go longer than 90 minutes without beeping and needing attention. The worst is at 3AM. We get it Steve. You’re special. Calm down.

I think this meme very accurately sums up his wailing.

BEEP BEEP BEEP.

Day +5: I’m still alive, I promise.

Day +5. Most of my counts have zeroed out now: neutrophils, lymphocytes, leukocytes. My platelets have been depleted to a low level such that I’m getting a platelet transfusion today, but my hemoglobin has stayed above 7 since a blood transfusion on day -2 (which is when the serum sickness started).


Sorry for not writing much in the past few days. Getting over the serum sickness was probably, honestly, the worst thing I’ve ever had to do in my life. My days consisted of chronic aches and overbearing nausea, with spikes of fevers sprinkled in between. I cycled between pain meds, nausea meds, with no appetite — the most I could stomach was apple sauce and popsicles and even those got old. A dose of oxycodone, followed by dilaudid, followed by ativan, followed by tylenol, and then more drugs, other drugs, more pills, more bags hung on Steve connected to my octopus arm. Sleeping through the day and night in 60-90 minute intervals only to be awakened by some pain or beeping and then to be put back down with meds (narcotics).

I did a lot of aimless talking, daydreaming. For example, I apparently had a dream where a little old man was telling me how the world was going to end, and when asked what he said, I responded, “It’s just one of those.” Or, I had a dream where I was walking in my work neighborhood where there’s a lot of construction happening and in the distance I saw a construction worker on a building who’s butt, when bent over, looked like the Virgin Mary’s nose. So I did what any sensible person would do, I touched it.

Needless to say, I made it through with flying colors. I’m alive, I’m much much better, and I’m eating more. Now the biggest thing I’m facing (again), is the not-so-irrational fear of getting sick from something since my immune system is gone-zo. Chronic hand washing, water chugging, chap stick applying, doubly scrutinizing something if it’s clean enough for me to even touch (I’ve been religiously wiping my phone with alcohol wipes). Now we play the waiting game. Again.


Halloween was this past weekend. Halloween is one of my favorite holidays of the year, what with the costumes, parties, and yummy fall treats. I had major FOMO this year, but I was cooped up in bed resting all day. Ricky swung by and helped me put together little bags of candy for the patients on the floor. I went around and delivered them to people, in a “reverse” trick-or-treating kind of way.

I was nervous at first, because I had no idea what each patient was going through behind their closed doors, but everyone received the goodies well! It made me so happy to see how happy people were from such a small gesture. 🙂