Day +11. My counts are really on the rise and I’m no longer neutropenic! Woot! In fact, my doctor says I could leave as early as tomorrow, which is a good but stressful thing. My counts have nearly doubled, again, and I have so much more energy now. I feel pretty good.
My dad is planning on driving out of El Paso tomorrow morning, making a quick stop in Phoenix in the afternoon, the continuing to LA where he’ll stop for the night. On Thursday, he’ll make the drive up the Cali coast to get to SF by the afternoon. Depending on how things shape up with training, discharge instructions, etc. I could be home as early as Thursday night!
It’s really a St. Patty’s Day miracle! Watered down green Pilsner, you’re one step closer to being in my belly.
I had a chance to speak with a nurse who is coordinating all of my in-home care. She dropped by this morning and “trained” me in how to take care of my Hickman (e.g. flushing the lines, administering IV magnesium if necessary, etc). Just another step closer to getting out here and being independent again! Taking care of the Hickman won’t be too much of a hassle. Each day I’ll need to flush each (3) line with saline and heparin just to keep them clean. They (Crescent Healthcare/Walgreens Infusion Services) will be sending me materials to help with the upkeep (all covered by my insurance thankfully). My doctor thinks I won’t need a magnesium IV drip considering how the levels of magnesium have come back to normal, so I’ll be taking my magnesium in tablet form along with the other prophylaxis and pro-graft drugs I’ve been on for the past few days. But in the event that I do need IV magnesium, I’ve been trained on how to administer that to myself. I’ve been told by a number of nurses that I’m both the most popular patient on the floor (I get tons of visitors) and I’m the most favorite patient on the floor (cos I’m low maintenance, very compliant, and have such a good attitude). What can I say? I woke up like this. #flawless 😉
I’m super excited to be headed home for sure by the end of the week and pretty stoked to get to feel the sun on my skin again!
Counts are still low but on the rise! In fact, both my total white blood cell count and absolute neutrophil count have doubled since yesterday. The doctor thinks I’ll be well enough to go home on Thursday or Friday. (AH! One less week in this cell!) The day I get out depends on when my dad gets into town. He’ll be driving out of El Paso on Wednesday and should get here Friday. So we’ll see. He has to get trained on how to deal with my Hickman properly, how to flush my lines, learn which drugs to administer when, and get guidelines for food prep and home cleanliness.
Apparently my body has taken to the transplant really well and is recovering very quickly. Where my counts are now, most patients don’t get to till day +18. Way to go youthful, resilient body! I’m still on the climb back to normal cell counts and I’m starting to feel more energetic, but it’ll still be a while before I’m back to “normal,” whatever that means anymore.
Sorry for the radio silence over the past few days. Since my counts were so low, I was really really tired. I spent most of my days sleeping or watching movies/TV shows. I binge watched Unbreakable Kimmy Schmidt (SO GOOD, SO RACIST?), Silicon Valley (not that big of a fan), Looking Season 2 (unimpressed), and Fresh Off the Boat (huge fan). I’ve also seen a ton of movies, good and bad, too many to list.
I also didn’t have a lot of visitors because A) I was severely neutropenic and didn’t want to risk catching anything from anyone, and B) when I’m really tired and irritated, I’m horrible company. So to save people from my wrath (and possible boredom from watching me sleep), I didn’t let people come visit, except for my friend Ricky K. He brought movies and card games. That was fun.
For now, it’s just a waiting game. I’m getting stronger and more energized each day; my mind is getting sharper and I’m able to focus on things better. I should be outta here in no time! And then it’s home-lock down with the daddio until I’m deemed healthy enough to re-enter public spaces/society, though I have a lot of things I want to do while my dad’s here so I can show him the California that I love (e.g. hiking, going to the beach, road trips, etc).
Tomorrow’s St. Patty’s Day! What I would give to have a pint of watered down green Pilsner with a slab of corned beef and boiled cabbage. If there’s anything Boston taught during my tenure there is how to celebrate St. Patrick’s Day like a true Irishman. I suppose I’ll have to wait until I’m better to enjoy those things. Oh, and lots of pie to make up for the Pi Day that I missed. I cried a little on the inside for that one.
Day +7. Counts are still low. Energy levels are starting to pick up. Legs are really sore. I walked a lot yesterday and did squats. -_-
The Road to Recovery, Part II: The Long Game.
If you take a look at my dry erase board, the top row are the white blood cell counts, second row is absolute neutrophil count, third row is hemoblogin, and fourth row is platelet count. You can see when I had that fever where there’s a spike in counts, but after the transplant (Day 0), my counts have been trailing downward. Today is the beginning of the actually recovery time where we’re looking for my cell counts to begin increasing. I started a regiment of Neupogen (G-CSF booster that’s supposed to stimulate the production of neutrophils), to begin getting my neutrophil counts back up. And now, we just wait some more.
Beginning today, they switched my anti-fungal medication from voriconazole, a pill, to caspofungin, an IV drip, because there was a marked increase in my liver enzyme function that seemed to be reduced when I wasn’t on the medication. We did an ultrasound yesterday (really cool!) to check out my internal organs for inflammation or blockage of the bile ducts, but everything was normal. Voriconazole can raise your liver function as well as give you visual disturbances and light sensitivity for about an hour after taking it — which happened to me. I’m glad we switched medications. 🙂
To kill the boredom. That’s been the biggest challenge the past few days. From watching movies and binge watching TV shows to perusing the internet, I’ve been desperately trying to pass the time. It’s great when I have visitors as I said in my last post, because visiting with people is the best way to spend my days. But for those times when I’m alone, I’m left to my own creativity to pass the time.
Over the past few days, I’ve received a good number of surprise gifts in the mail that have been helping pass the time! Things from coloring books to brain puzzles, jigsaw puzzles to a madlibs, I’m so grateful for all the fun things people have sent me!
Two amazing coloring books with colored pencils, compliments of Connie C. & Alicia B. <3
A brain puzzle book and an Anthony Bourdain book, compliments of Daniel and Logan T. 🙂
A slingshot, whiffle balls, and other mischievous goodies, compliments of Chris W. and Michael M.
Madlibs and a Rubik’s cube, compliments of Charu J.
Paper flowers, a Thomas Kinkade jigsaw puzzle, and Sur La Table giftcard, compliments of the Walter and Weissman labs.
South Park Stick of Truth and movies from Graham W., and chocolates from Tracy F. and Hoshang C. (but they didn’t even make it in a photo… obv).
Thank you to everyone for all of your generous gifts and words of encouragement. I definitely have enough things to do to fill my time to #beattheboredom. I have about two more weeks of recovery before I’m allowed to go home, but I’m hoping I’ll be out before then!
Day +5. Counts are still trending downward (dog), and energy levels are still pretty low. Sass levels on the uptick.
One of the big things I’ve been bugged about during my tenure at 11 Long (going 13 days strong!) has been to get exercise. I know the nurses aren’t targeting me, a *relatively* healthy 26 year old guy who prior to this diagnosis was going to the gym 4-5 times a week, but it’s something they always ask or mention whenever they pop in to take vitals, which btw happens every ~4 hours. (Okay okay fine, I was going to the gym 3-4 times a week. Geez). But I still can’t help but get the feeling that even with their very kind suggestions, they’re targeting me. It’s unfair really.
Truth be told, I don’t get out and walk as much as I should, but I have this lingering paranoia that since I’m neutropenic I’ll get some kind of infection if I take one step outside of my HEPA-filtered, UV-filtered air room! Plus, I have to walk around the floor wearing a mask and it’s cumbersome and it fogs up my glasses when I breathe. Did I forget to mention that there are a bunch of obstacles (e.g. chairs, EMR stations, equipment, other patients etc.) in the hallway that obstruct efficient and easy walking? Basically, I’m just being a whiny baby finding any excuse not to walk around, and I should suck it up and get more exercise in.
Today, I had a consult with the PT on-call Giselle. Interrupting me mid-second movie of the morning (Parallels on Netflix. Look it up), she walked two laps with me (~1/6 mile) and took me to the Solarium (the name of a visiting room on the floor) to show me some easy standing exercises I could do. Not gonna lie, I was getting winded by doing squats, standing calf raises, and step ups. (Err… I need to be exercising more, despite my nurses saying I’ve lost weight). But it was nice to get some movement, especially being guided by a friendly mask-covered face.
We came back to my room and she quickly ran “upstairs” to grab a set of resistance bands. She showed me a good number of exercises I could do using the bed with the bands that are lower-grade, weight-free versions of tricep pull downs, bicep curls, seated row, shoulder extensions, leg extensions, and the like. I wonder if I’ll use these bands so much they snap? *Watch out Total Gym! I’m gonna make my own home fitness machine and call it the Total Hospital Bed!*
I was pretty grateful (though initially annoyed) for Giselle and her simple yet effective in-room exercises she showed me. I was wondering how I was going to maintain my chiseled, rock-hard, gym-toned body while I ate away my feelings in vanilla malt shakes and animal crackers. Now I can have my cake and eat it too!
The days have started to mix together in my mind. Mondays become Tuesdays become Wednesdays and I lose track of time (DST didn’t help). I’ve been making arbitrary check lists for the day just so I can feel like I’ve accomplished something with my life. The real saving grace during this entire stay has been having visitors. Friends from all parts of my life have popped in for a few minutes to a few hours just to say hi. Seriously, seriously. Thank you. I look forward to the times when people say they’ll come visit because that means that’s less time spent perusing the internet or debating which B-list movie to watch. <3
On some visits, friends will bring little treats and gifts which are always such a pleasant surprise! Like my friend Matt O. brought my sister this past weekend, and my friend Isaac brought me Starbucks Via to feed my caffeine addiction. The best gift anyone can bring me though is their company. Nothing beats any time spent with people that I love and care about. Occasionally someone will bring something extra special though. Like, really, really special that they made by hand. Today was one of those days.
My friend Paul J. or as I like to call him “Tall Paul” swung by for a visit today and brought this little happy gem I like to call leisurely bedtime reading:
It is a special, one-of-a-kind, handcrafted book, which includes a perfect, tasteful collection of cute animal and male fashion pictures, complete with a progressing plot line and speech bubbles. I have to say, I haven’t seen anything this creative in a while and would highly recommend a read. I’m surprised it hasn’t made the NYT best sellers list yet! Granted, there’s only one copy in the whole wide world and it resides in room 1159, but if you can get your hands on the copy, I’d suggest reading it. Thanks a ton Tall Paul! 😀
Day 3. Another round of methotrexate and continued prophylaxis drugs. Focusing on playing the long game.
My sister came to visit for the day/night yesterday thanks to the gracious gift from my friend Matt Ogawa. She flew into SF in the morning, hung out all afternoon, we had a slumber party in my room!, and then she left from El Paso again this afternoon. It was such a treat getting to see her. Literally, because she brought a huge bag of snacks and candy. Figuratively, well, because it’s always comforting to see family when you’re not feeling well, duh. 😉 I polished off an entire bag of Haribo gummi bears in less than an hour of her arrival, which promptly led to an annoying stomach ache (shocker) for the next few hours. Either way, they were delicious. And I reveled in the childlike state I reverted to upon completion of the bag, not to mention sugar high.
At night, we watched the ever-so-glamorous Teen Witch (1989) upon recommendation from my friend Graham, who also visited yesterday. Let me say, if you haven’t seen it yet, do it — it’s streaming on Netflix. It’s a completely self-indulgent, 80s chick-flick teen movie. Over the top with ridiculous hair, clothes, white people rapping, shameless teen make out scenes, and of course, implausible magic. A cult classic for sure and a definite keeper for the TCM vaults. One of the best scenes:
To help pass the time, I also recently downloaded the game SPORE. An oldie but a goodie from back in the day. The premise of the game is you begin as a microbe and evolve your way into being a higher-order being and then build and develop civilizations. This was a game I always wanted to play as a kid but never got around to doing, so I figured, why not?
My lymphocyte, platelet, and neutrophil counts continue to plummet (almost zeroed out now!) while my hemoglobin has steadily increased over the past two days. This has been interesting because I haven’t had this much hemoglobin in my body in the past 6 months so adjusting to the richly oxygenated state of things has been interesting. I’m super mentally aware, but physically exhausted and still not about to focus with much high acuity on things yet. Even playing piano has been a struggle.
I’m officially neutropenic now, which means I have to be extra careful about not getting infections, so I wear masks in public spaces, etc. I’m getting more and more thrombocytopenic, so I have to be careful not to haphazardly cut myself or bump into things to avoid scars and nasty bruises. All in all, I’ve sort of put myself into a “bubble boy” mindset trying to keep myself out of the way from all possible harm.
I also, got my Hickman dressings removed today! Yay! I now just have a tube sticking out of my chest. #bionic
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:
–Â 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. <3
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. 🙂
