Yesterday was such an amazing day full of excitement and lots of little surprises. I really can’t thank everyone enough for all of your kind words, encouragement, prayers, and thoughts. My transplant day was super successful! Thank you again for all of your support! 🙂
And now begins The Road to Recovery,Part I:Engraftment.
Over the next few days, my cell counts will continue to plummet as the chemo finally steps up and does what it’s supposed to do while the new marrow settles in and “engrafts” into my body. I’m currently on a regiment of prophylaxis drugs (levaquin [antibiotic], voriconazole [antifungal], acyclovir [antiviral], zyrtec [antihistamine]), as well as anti-GVHD drugs (tacrolimus and CellCept) to help facilitate good engraftment.
Heck, I’ll just list out all drugs I’ve taken so far for kicks:
– Anti-nausea (zofran, ativan, compazine)
– Anti-pain (oxycodone, tylenol, morphine*)
– To help with bowel movements (colase, senokot, miralax)
– To help with acid reflux (maalox, prevacid)
*Not yet, but it’s on my chart if I need it.
Tonight, I begin methotrexate which is supposed to help slow the growth of the donor marrow cells so they don’t get all crazy and take over too fast. I like to describe the engraftment period like switching gears on stick shift:
The goal is to get from one gear (or immune system) to the next as smoothly as possible without stalling the car (or body). First, we ease off the gas and while pressing the clutch (letting the chemo destroy my old immune system), then we shift gears (transplant), then ease off the clutch while pressing the gas (letting the new immune system take over). The anti-GVHD drugs are really like the clutch — they help control the smooth transition of the marrow and allow for the new cells to settle in nicely while trying to reduce the number of possible side effects.
I hope that makes sense. Tbh I’ve never driven stick shift before so…
Today has been pretty great so far. Very low-key and calm for me. I’ve been fairly drowsy so I’ve been resting a lot. Despite that, my hemoglobin count came back at 10.3g/dL!! That’s a bfd. For the past six months I’ve been hovering around 7-8.5g/dL so this is huge! My brain is so, so active, but my body is so, so tired, which makes sense considering I’ve just endured a week of chemo. Either way, this is super exciting! But I just wanna nap for now.
Also, they finally took me out of isolation because all of my cultures came back negative (yippee!) so I’m able to leave my room and walk around. And I got to wear one of *my own* shirts today! I don’t have to worry about the chemo being excreted through my sweat anymore. It’s a beautiful day.
Wow. Wow wow wow wow wow. What an effing day! I am beyond words with how many bursts of emotion I’m feeling right now. I can’t even being to explain how truly humbled, elated, blessed, happy, ecstatic, pumped, relieved, hopefully, excited, awestruck, and moved I am. The influx of support and words of encouragement that have gotten me through today have been an incredible boost of energy and positivity that made the day go by so wonderfully, without any major hitches!
The day started off early with me greeting the sunrise (and 5:30AM vitals). I showered, got dressed, had a full breakfast — see below — and was ready for the transplant to begin at any point in the morning.
Turned out the bone marrow center wasn’t open until 9AM and then there was a hang up with the pharmacy to get a mannitol order through (I needed some mannitol an hour before the transplant to help facilitate the transplant since I’m AB+ and my donor is B+… something about using a forced alkaline hydration/mannitol diuresis regiment to reduce fatal hemolytic transfusion reaction see here). Basically it helps reduce the possibility of cross reactivity of blood types since my donor is a different one, even though I’m the universal acceptor type (I think by helping coat cells with the sugar mannitol to reduce cross-reaction? Don’t quote me on that one. I need to do more research). We wouldn’t want the donor marrow to freak out and start hemolysing.
So then, I ordered lunch, had my nurses bring in the station bike and biked for 20 minutes, finished a movie called “Chef,” and made the most of the time I had to wait.
Finally, around 1PM the mannitol arrived and we got the show started. During that time my friends Matt Ogawa and Matt Cook stopped by and ended up being here for most of the transplant. We chatted, played UNO (compliments of Susie Wheeler), enjoyed mini powdered donuts Matt Cook had brought (OMG SO GOOD), and had a gay ole’ time!
Needless to say, even with my chemo brain, I still managed to win a game or two. It was so much fun! And the time passed pretty quickly.
When the marrow finally arrived it was seriously too good to be true. All of these months building up to these moments, all the anticipation finally getting to see its release! (Get your mind out of the gutter…).
I had the pleasure of working with two lovely ladies — Yvonne and Kathryn. Both very talented, kind, wonderful human beings skilled with the ability to work quickly, concisely, and seamlessly together. They were just as pumped about this as I was! Nerves were fluttering all around the room! Especially in my hands!
The transplant itself, once under way, was a very passive procedure. The marrow and a saline bag are connected to a filter tube which drips downward due to gravity into tubes that connect to my Hickman catheter. No use of pumps, pomp, or circumstance. Just good old fashioned gravity. Once one bag was finished, we flushed the remaining bits with saline, and loaded up the next bag until all four bags of bone marrow were transfused into my body. FOUR BAGS. That came out to a total of 1.67L of bone marrow. Think of a two liter soda bottle that an annoying roommate took a drunken swig out of and stuck back in the fridge. That much marrow. It’s crazy to think that I have that now. In my body. Floating around. All of those little cells finding their new niches and homes in their rightful places, to rest happily while they proliferate and help restore my body to its rightful “normal” functioning capacity. And to think my donor donated that much! I hope he’s a big guy cos dayummmm!
I was telling Matt and Matt that even after the first bag had started transfusing, I started to feel more energized, my brain felt more engaged, and I felt more active! Granted it was probably due more to the adrenaline, but still. This stuff is legit! Even now as I type, I find I’m making less mistakes and my creative brain is spinning wildly. I’m ecstatic with happiness! 🙂
To add the icing to cake, my a cappella group from college the Dear Abbeys recorded and sent me a little beautiful ditty from the ICCA competition! I’m so, so proud of these guys and so damn grateful for their beautiful voices, talent, and care of the old folks!
Thanks guys! You really know how to make an old man find his groove again!
To add the literally icing to the cake, the nurses at 11 Long ordered me a little Happy Re-Birthday cupcake and sang me to me as I blew out my unlit (fire hazard no!) candle. They are such a wonderful group of people. I can’t rant and rave *enough* about them! All of the staff from admin, to pharmacy, to the nurses, to NPs, to interns, and attendings. Everyone I’ve met has been amazing and responsive, kind and genuine. I feel so incredibly blessed!
The day ended five hours later with more vitals and a very happy, excited farewell to both Matts and my nurses, and now the night shift takes over. The last things left are another mannitol transfusion, more vitals at night, and then the schedule resets at midnight this time with a slightly altered chemo schedule. More on that later.
With calls, texts, Facetimes, messages, and emails throughout today, I truly felt all of the love you guys were sending. All of that positive energy, your prayers, your thoughts did not fall on vain ears. I believe every single one of you helped me succeed through today and I’m incredibly thankful for you.
Thank you for your strength when I thought I couldn’t keep going. Though I don’t talk about it at all on this blog, there were numerous times this past week and in the past few months when I just wanted to give up, throw in the towel, and forget it. But it’s with all of your constant love and support I was able to make it through today, and again I will make it through tomorrow, and the day after, and the day after, and for many more days to come. So, thank you. Thank you from the deepest, depths of my heart.
So what’s next? The upcoming weeks will probably be the most trying of them all. My blood counts will continue to crash as my body adjusts to this new immune system, but with my amazing support team monitoring me 24/7, I should be well taken care of. It will take about 5-6 days for the new marrow to engraft properly, and then 15-20 days for the marrow to flourish and start picking up my blood count numbers. But I’m not afraid. I’m ready for this. It’ll be a slow, steady process, and I’m ready to fight tooth and nail each step of the way. Cos I’m a fighter, not a quitter.
Well, today’s the day. I woke up when the night nurse took my vitals and haven’t been able to go back to sleep (for obvious reasons). So much excitement, so much anticipation for such a simple procedure.
To quickly break it down for you, yesterday my donor donated his marrow — most likely a removal of marrow from his iliac crest (lower back) — in volumes of 50-200mL (a pretty significant and painful amount). From there his marrow was probably immediately stored on ice and/or treated with sometime like EDTA or heparin to reduce the amount of clotting that naturally occurs with blood products. It was then shipped to UCSF and probably arrived late last night and is being processed in the blood bank. They’ll irradiate if needed (though I doubt they want to get rid of anything from his marrow since my blood type is compatible with mine), check for cell population distributions, health of the marrow, and then give the okay to transplant.
All of this information is still up in the air and unknown to me. I don’t know how much marrow I’ll be getting, thus I don’t know when we start or how long it’ll take. My projection is that we’ll start sometime in the late morning and run into the mid-afternon. I’ll keep you posted.
As I look out my window on the dawning sun, it’s amazingly humbling how beautiful life is. With Adam whirring quietly in the background, I can’t help but think of all the individual lives that slowly starting to get their days started with other lives have been running full speed and are now winding down. The synchronicity of what we call human life is something so precious and powerful. I’ve come to appreciate it more and more as I grow older, aside from the uniqueness of each person that makes up the milieu that surrounds us.
Quite a few things have happened in the past two days. First off, I’ve finally staved off a narsty fever that had me in bed for quite some time. I feel completely normal and back at it! I even finished my taxes this morning! 🙂
The doctors are still confirming that it’s not due to an infection (respiratory virus or anything in the blood/urine). I’m not a medical professional, but I think it’s prolly due to all the chemo I just endured. I’m just sayin. One of the joys (or not) of being under review is that I’m in quarantine. This basically means I can’t leave my room, people have to wear masks when they come in which leads to mass paranoia and avoidance of meeeee! It’s really not that bad. But I know the cultures will come back negative. I digress.
Adam has lost some weight ever since my intensive chemo regiment ended! He’s looking mighty slim and more my type 😉
I’m just getting a saline drip now since today is day-1, my rest day. Everything I’m taking now are pills. Alllll of the pills. Pills for pain, pills for headaches, pills for bowel movements, pills for nausea, pills. So. many. pills.
I’ve gotten some pretty sweet gifts too from friends both in and out of town (not all shown here, cos, you know, it’s silly to show gift cards). I really have some of the best, most thoughtful friends ever. ❤
I’m very thrilled to say that I’m able to contact my bone marrow donor and send him messages through the registry! I sent a letter to him not long ago which I’ve attached below. I hope he responds to me, but if not that’s cool. I’ll keep bugging him though 🙂 I really hope to meet him one day. I imagine he’s a Korean American guy, much like myself but older and more mature, with more things figured out. But who knows if that’s true. I digress again…
Dear Donor,
Hi. As I write this, I imagine you’re already donating/have donated your marrow. I’m really struggling to hold back the tears as I think of your sacrifice and your selfless commitment to helping me, a random stranger, get better. There aren’t enough words in any language that could express how grateful I am for you. Thank you. Thank you so very, very much.
When I was diagnosed last fall with aplastic anemia, I really didn’t know what to expect. It’s a rare hematological condition where your body stops making enough red and white blood cells to support efficient oxygen exchange and immune response, and a bone marrow transplant is a curative treatment for it. Initially I was in denial about the whole thing, with the prospect of a transplant being something on the far horizon, but as time progressed and my doctors pushed for a better treatment plan, the transplant became imminent.
And with that we searched the registry. In less than three weeks, we found you. (We also found me as a match because I had registered in college, but that was just a funny coincidence). What great fortune, what sheer luck that the universe would find someone in the world with a perfect 10/10-HLA type match as me, and in such a short period of time? It’s amazing how things work out that way.
I’m not a very religious person anymore, but my parents believe it’s God’s blessing upon me that brings me such fortune and care in this world. My mother is incredibly grateful for you too. She prays for your health, well being, and success in this world, daily, as do members of my home church. I hope that’s okay.
One day in the near future, I hope to be able to meet you to say thank you in person. But for now I hope this suffices. Anyway, I won’t babble on and on; I just wanted to say thank you. Thank you for this second chance at life to be able to do the things I love to do, and to share more time with the people I love. Thank you for giving me the opportunity to see more sunsets and sunrises, to eat tasty pastries and try new cuisines (I’m a bit of a foodie), to sing with my friends as we blast songs on the radio, to see my nephew grow up to be the strong young man I know he’ll be, to hopefully walk down the aisle announcing my commitment to my future partner and to raise kids myself one day. Thank you.
The hospital food I’ve had so far has been pretty good, surprisingly. There’s a decent range of cuisines you can order from, much like a hotel room service! Anything from American comfort foods like mac & cheese to generic Italian foods like lasanga and pizza. Some examples are as follows:
Eggs and bacon, cream of wheat, a fruit snack box, blueberry yogurt, two cups of Peet’s coffee
Roast beef sandwich on wheat bread, a veggie snack box, chips, a banana, chamomile tea, two bottles of water
Chicken quesadilla, steamed veggies, strawberry ice cream, two bottles of water
Scrambled eggs with cheese, bacon, hash brown, yogurt parfait, two cups of Peet’s coffee, one bottle of water
Cheeseburger, steamed veggies, side salad, a banana, cup of Peet’s coffee, two bottles of water
Chicken ginger juk, chicken shumai, rice, steamed veggies, chamomile tea, one bottle of water
Oatmeal, hard boiled egg, an orange, a banana, two cups of Peet’s coffee, one bottle of water (my appetite has been declining)
Cheese quesadilla, chicken noodle soup, veggie snack box, chocolate milk, two bottles of water
I’ve been eating fairly well since being in the hospital, but haven’t been passing as many bowel movements as I should. They have me on stool softeners and mild laxatives, so hopefully my movements will become more regular. Bottom line, hospital food isn’t all that bad. 🙂
I had a really rough night last night. Aside from the chronic pee breaks that horribly disrupted my sleep, I came down with a mild grade fever around 5AM (38.6degC) that had my nurses worried. They immediately did a chest X-ray, took a urine sample, and took a blood culture to see if I have an infection. The X-ray (to check for an lesions/fluids) came back negative and the preliminary urine sample came back negative. We’re waiting for the blood cultures to see if there is anything to be worried about — there’s usually a 24 hour turn around time for those.
The fever came and went all morning until about 3PM when it finally broke and I sweat it out. Not going to lie, I was really worried, and I felt like complete crap the whole time. They medicated me with acetaminophen and oxycodone to keep the pain at bay. Thankfully the fever broke sooner rather than later. My doctors think that it’s prolly just the chemo that induced the fever, considering that my neutrophil count wasn’t low (in fact it was elevated today). Because of this stupid congestion cough that I still have and the fever, they’ve put me in quarantine until the final tests come back negative. That means no walking around outside my room. I’m not that upset about it since I’ve just been watching Netflix all day. Speaking of which, I just finished Season 3 of House of Cards. Biggest. Letdown. Ever. Ugh.
Today is the last day of the hardcore regiments of chemo. Last round of rabbit ATG, cyclophosphamide, mesna, and fludarabine! Woot! Less interrupting pee breaks for me! Tomorrow I begin a different drug called Tacrolimus which is supposed to help mediate/alleviate potential graft-vs-host disease. Then it’s a day of rest of day -1, then transplant and a new regiment of drugs starting day 0. I’m excited to get this show on the road!
I must say, I’ve had such a wonderful experience here at UCSF so far. All of the staff from nurses, to admin, to NPs, to MDs have all been wonderful people to work with. They are really caring and so damn smart. Major props to my gurls Caitlin and Girlie though. They’ve taken the best care of me! I’m so grateful to be under their care. 🙂
You’d think that for a patient who is under 24 hour care, disruptions would be kept to a minimum. Yeah. No. Aside from the constant pee breaks (Lord knows that happens more than once an hour), you’re constantly being checked on, for better or worse. Vitals, meds, fluids, you name it! Any reason, any time of the day. Don’t get me wrong, I’m not complaining about the amazingly superb care I’m receiving here at UCSF (seriously though, they’re fantastic). I’ve yet to meet a nurse who isn’t a wonderful human being and a great nurse.
Through it all though, I’m starting to find a rhythm (as musicians tend to do) to each day. A typical days goes as follows:
12:00AM – vitals
1:00AM – pee break
4:00AM – vitals, additional pain meds
5:00AM – pee break
6:17AM – Adam beeps incessantly
7:30AM – pee break (usually when I wake up)
8:00AM – order breakfast
8:30AM – shower & get ready for the day
8:35AM – pee break
8:45AM – breakfast arrives; salt & soda rinse after
9:00AM – get a new bag of mesna (bladder-damage control drug) and pre-meds
9-10:00AM – walk around the floor 12 times (equivalent to a mile)
10:00AM – next dose of cyclophosphamide with more pre-meds
10:05AM – pee break
11:00AM – next dose of rabbit ATG
11:00-11:20AM – check vitals every 5 minutes to ensure no adverse reaction to the ATG
11:30AM – order lunch
11:50AM – check vitals again, increase the speed of ATG infusion
12:15PM – lunch arrives; salt & soda rinse after
12:18PM – pee break
12:30PM – check vitals again, increase the speed of ATG infusion
12:30-1PM – walk around the floor 12 times
1:30PM – check vitals again, increase the speed of ATG infusion
1:32PM – pee break
1:32-3:00PM – binge watch House of Cards, play piano, or have visitors
2:15PM – snacks on snacks!; salt & soda rinse after
3:00PM – get another dose of steroids (SUPASTRONG), get pain meds
3-5:00PM – binge watch House of Cards, play piano, or have more visitors
5:00PM – order dinner
6:00PM – dinner arrives
7:00PM – shower
9:00PM – pre-meds (anti-nausea, etc)
10:00PM – another does of fludarabine
10:18PM – promptly PTFO
10:30PM – check vitals
10:45PM – pee break
Rinse, wash, repeat.
Now, there’s a good amount of variability that can happen in a given day so each day isn’t horribly monotonous. Say, I decide to go on an extra walk, or have additional pee breaks, or more visitors. The treatment regiment is fairly predictable though, and I’m totally okay with that. I’m finding it to be an exciting challenge to see how much I can squeeze into the in-between time before a nurse is supposed to check in on me. It’s the little things. 🙂
Day -4 and counting! Still tolerating the chemo pretty well. No major side effects again (YES!) aside from body aches and being a little flushed. Hoping for a continued smooth ride.
Thank you to everything who’s come to visit me so far! Having visitors is really one of the best ways to help break up the day. It also helps snap you out of the hospital drudge and reminds you that life still goes on outside of these four walls. Ooh, that sounds like a great indie album name, “Outside These Four Walls.” Or a 90s alternative rock band.
You know how at summer camp they tell you to drink enough water so you “pee clear?” Well, something similar happens here in the BMT ward, except you don’t need to drink as much water because the hydration is constantly being pumped into you. That, compounded with drugs to extract excess water from the interstitial space is making me pee frequently, and in large volumes. We’re talking about anywhere from 300-700mL of fluid every hour. That’s 2-4 gallons of fluid a day. It’s insane. The craziest thing is that when you have to go, you have to go. There’s no time for “waiting until we find a porta-potty” or, “let’s find a Starbucks.” It’s either go or wet yourself. An all-or-nothing purging of fluids that have rapidly accumulated in your bladder; each release being measured and documented of course.
I know I shouldn’t be complaining about this since A) I have my own bathroom 5 feet from my bed, and B) all of my energy should be focused on… brb, potty break… getting myself better, but this constant urge to pee (just released another 330mL) is just insane.
Anyway, I digress.
Today is another fun-filled day of chemo. Same as yesterday but with higher doses of everything. More mesna (bladder-damage control), more cyclophosphamide, and double the dose of rabbit ATG. I’m anticipating that I’ll be relatively alright just like yesterday. The worst I felt was just some body aches and I was a little flushed; sort of like when you start feeling flu-ish. Thankfully there are medications that can help alleviate the icky feeling. I’m so grateful my body has been tolerating the drugs rather well and that I haven’t had any highly disruptive side effects (e.g. shakes, hives, rashes, GI issues, etc). I’m hoping for a continued smooth ride for the rest of the week.
Those of you in the Bay Area, enjoy the beautiful day! It looks gorgeous out! Those of you everywhere else, sorry I’m not sorry for the snow. Hot cocoa? 😉
P.S. Adam sends his regards. He rudely woke me up at 5AM to let me know I was low on fluids. I think we’re past the honeymoon phase.
The Bald Heme-iola 