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.

Holy. My. Lanta.

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.

I would like to introduce you all to my new best friend (for better or worse) for the next few weeks, Adam.

Adam accompanies me everywhere. Everywhere. To the bathroom, to the shower, on walks, while I’m in bed, while I’m listlessly gazing out the window (check out the view below — you can see the Golden Gate!). He’s like a bad habit I can’t shake, mainly because he’s attached to tubes that are planted in my body and sticking out of my chest. He whirs and beeps, and is needy af. He doesn’t follow directions, can’t think for himself, and even gives my nurses a hard time. But either way, I still care about him. You might even say it’s true love. Or an unhealthy (but productive) co-dependent relationship.

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Today is day two of chemo. I’m feeling pretty good actually. Before each chemo drug, I get a tasty cocktail of pre-treatment drugs to help alleviate possible side effects. Anti-nausea, anti-inflammatory, steroids, opioids, the works! The fludarabine was well tolerated last night and today I’ve received mesna (a drug that protects the bladder from damage due to some of the chemo), cyclophosphamide, and rabbit ATG. I’ll get another round of fludarabine tonight.

There are so many considerations and self-hygiene things one has to practice when on these drugs. For example, flubarabine is processed and excreted through sweat so I have to shower at least twice a day to clean it off to avoid a chemical skin burn. The mesna is accompanied with a hydration drip so I’m frequently having to urinate, which btw I have to measure the volume of urine each time I go! In a jug! Bizarre.

Anyway, my lunch just got here. Time to eat! 🙂

I’m sitting in my hospital bed almost ready to retire for the day. It’s been a whirlwind of an adventure so far! The day continued (since I didn’t sleep) with a morning full of pastry and delicious lattes at Cafe Sophie. All I really wanted was a pistachio croissant, and we sure got it, along with one of each of the pastries there… at 7AM. -_- Greg Mindel is the baker who supplies Cafe Sophie and other cafes in the city with his amazing creations. #bakeridol

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After a filling breakfast, Bekah and I came back to my place and last minute packing commenced. Oh, and I shaved my head again.

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Matt then came to pick us up and we were off to the hospital! We arrived, I checked in got settled into a temporary room on the 11th floor, and then I was whisked away to interventional radiology (IR) to get the Hickman catheter placed.

1. A Hickman line is a central venous catheter most often used for the administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis. Some types are used mainly for the purpose of apheresis or dialysis. (Wiki)

The rest of the day is sort of a blur. I napped, had lunch, napped, had dinner, and am now gearing up for my first round of chemo. Fludarabine. Here we go!

I didn’t sleep last night. In fact, I’m greeting the sunrise as I’m writing this. I don’t know if it’s from the excitement, anxiety, nerves, or fear… probably a mix of everything. I’m going to regret not sleeping, but I’ll have all the time in the world to sleep later, that is, after binge watching a few episodes of House of Cards Season 3. 🙂

I had a great “last day” yesterday. My pre-admit appointment went well. The chest X-ray came back negative for fluids in my chest and the nasal swab was preliminarily negative for any viruses, meaning my chest congestion really isn’t anything to worry about for now. No fever, no new aches or pains. My blood counts came back as expected:
– 8.9g/dL hemoglobin. You get roughly 1 “point” per unit of blood transfused so this is on track.
– 2.35e12/ RBCs. Still very low, but better than before.
– 25% hematocrit. Again, low but better.
– 5.6e9/L WBCs. In the normal range! For once. I think it’s cos my body is trying to kick this congestion. Either way, this number is comforting. Very, oddly comforting.
– 2.94e9/L neutrophils. In the normal range too! The neutropenia has subsided for now. I think, again, this is due to the congestion.

Good to go for admission! (Barring my congestion doesn’t get worse).

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After my appointment with Dereck (my amazing NP), I met with Sharyn, the transplant coordinator. I honestly have to say I could not have asked for a better person to be my BMT coordinator. Sharyn is so on top of her game. She’s spent some time in the BMT clinic so she has experience caring for BMT patients. Given that, she knows what to expect in the whole process and has a special ability to efficiently explain and articulate every detail with poise, kindness, and a calming certitude that leaves you at ease in a time of stress and anxiety. She’s the best and I’m so, so happy to have her on the team. Anyway, I digress.

Sharyn took me on a tour of 11 Long, the floor where I will be admitted. I got to see the facilities, a lay of the land, and met the charge nurse who will be admitting me, Jessica. I’m not going to lie, the atmosphere is dense. So dense, you could easily cut the air with a karate chop. But then again, that’s what one would expect when they enter an area of intensive care and recovery, no? It was great getting to see where I’ll be going to help mentally prepare myself for the big admit day. There are exercise bikes, a community board, and donated scarves and hats for the floor. After seeing the landscape, it’s my goal (other than to get healthy again) to bring some happiness to the floor in whatever way possible. Ambitious as it may be, considering I have no idea how much energy I’ll have, there’s no reason why it can’t be done, or why I can’t at least try. 🙂

I found out more details about my donor! He’s a 29 year old male who lives in the US with B+ blood type… That’s about all I get to know. I almost burst out crying when Sharyn told me this information. Completely overwhelmed with emotion.

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After the tour, Bekah and I went shopping downtown to try and find her some high-rise black jeans. This may seem like a menial task, but you’d be surprised how difficult it is to find such a simple clothing item. After searching for hours, we ended up empty handed (not without picking up a few other things though, obv). We headed to Southpaw BBQ for dinner for my “Last Supper.” Dry rub pork ribs with black pepper brie mac & cheese and braised brussel sprouts with bacon, gumbo, and their version of nachos. Good ole Southern comfort food.

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In other news, this was also a major topic of controversy:

I don’t know if you were apart of the discussion, but this little dress almost broke the internet. What colors do you see on this dress? I see white and gold. Bekah adamantly sees black and blue. This caused such a fuss on the internet and at dinner! Apparently, the dress is actually blue and black, but I still don’t see that in this picture. I’m sticking to my guns.

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When Bekah and I got back to my place, we did these face masks from Sephora. I don’t think they really did much “rejuvenation” but it was a TREAT YOSELF kind of thing. I think we looked like Jason or traditional Korean masks.

It’s been so wonderful having Bekah here this last week before going in for the transplant. Both for getting to show her SF, but also for just being here as I prepare to win one of the hardest battles I’ll have ever faced in life.

It’s time to grab a quick breakfast and pack some last minute things. More to come.

I can’t even begin to express how grateful I am for the outpour of love and support from all of my friends and family over the past few days. I’m truly humbled and feel so loved! Thank you to everyone for your words of encouragement and for reaching out to me. I couldn’t ask for a better support network. I’m seriously the luckiest guy alive! <3

Today, I go in for my pre-admit appointment. They’ll take a blood count again and check off all the last little boxes before I get admitted tomorrow. I’m a little worried because I’ve been fighting off this annoying cough/congestion for the past week and a half. I went in yesterday and they did a chest X-ray and nasal swab just to make sure everything is “okay.” Thankfully, I don’t have a fever but they still want to look for fluid in my chest and/or bacteria or viruses in my mucus *gross*. Worst case scenario, we delay the transplant a day or two until I’m back to “good health” (whatever that means these days). We’ll see.

Since getting the transfusion on Monday, I’ve been more energized than normal! I’ve been able to take Bekah around and show her the SF that I love. Here’s a quick recap of a few things we’ve done over the past few days:

Brunch at Plow

Lemon ricotta pancakes FTW.

Lunch at Facebook

We met up with my friend Matt Ogawa at Facebook for a quick tour and lunch. This is us at the Instacar.

Half Moon Bay Beach

Then Bekah and I made a quick stop to the beach. I was chasing the seagulls cos they attacked our crackers. I showed them who’s boss (I think).

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Twin Peaks

We’ve been so fortunate to have such clear days this week! Selfies at Twin Peaks.

Bekah almost killed someone with that shoe.

In-N-Out (aka Her First Time)

Bekah broke her In-N-Out cherry. It was glorious.

Golden Gate Bridge

What visit to SF would be complete without a trip to the Golden Gate Bridge?

We went to Bob’s Donuts afterwards, but there wasn’t enough time to snap any pictures between stuffing our faces (obv).

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The epic journey really starts tomorrow. A Hickman catheter placement and first round of chemo. Till then, I’m going to enjoy this city while I can.

Hi, and welcome to my blog. Here I’ll post updates, thoughts, feelings, and stories about my journey to recovery from severe aplastic anemia via bone marrow transplant. The “days” will mark how far along I am on this journey with Day 0 being the day of transplant. Depending on how well I feel, I’ll post as frequently (or infrequently) as possible. Pardon the puns, nerdy jokes, and awkward stories. I’ll be writing about everything from what I’m thinking to what I ate with little to no filter, so please read with discretion. Otherwise, buckle up and get ready because this is going to be a bumpy ride!

I’m currently sitting in the UCSF transfusion clinic getting two units of blood because my hemoglobin count dipped below the cutoff my hematologist set for me (7.0g/dL). A little frustrating considering I’ll be back on Thursday for a pre-admit appointment and officially admitted to the hospital on Friday, but I suppose getting blood and feeling healthier is a better alternative.

One of my best college friends Rebekah is visiting this week from Shanghai. It’s been great having her here for a few reasons. Other than spending time with a good friend, it’s been wonderful getting to show her around the city I love, eating all the delicious things SF has to offer (e.g. pastry). This has given me the chance to do and see everything I can before getting admitted. I’m excited for all the other things we have planned for this week. 🙂

I have a feeling my posts won’t be too long. Other than liking to keep things succinct, my brain hasn’t been cooperating much lately. You know, the whole lack of efficient oxygen exchange thing. Till next time.