Day 21: The Dark Side of the Moon

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

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

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

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

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

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

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Day 20: The New “Normal”

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


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

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

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

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


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

Day 16: Back to reality, or some form of it.

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

Pros:

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

Cons:

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

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


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

drugs


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

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

lastday

Bye 1159. It’s been real.

Day 14: Discharge Day.

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


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


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

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


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

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

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


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

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

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


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


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

Day 12: PSA – Check your health.

Dear friends,

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

Check your health. And check it annually.

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

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

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

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

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

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

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


So, I guess the point of this PSA is:

Check your health. And check it annually.

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


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

Day 11: It’s a St. Patrick’s Day Miracle!

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.

stpattysday


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!

Day 10: Like a young, spring chicken.

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: Recovery.

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.

countsIf 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!

gaycolor

Two amazing coloring books with colored pencils, compliments of Connie C. & Alicia B. ❤

books

A brain puzzle book and an Anthony Bourdain book, compliments of Daniel and Logan T. 🙂

slingshot

A slingshot, whiffle balls, and other mischievous goodies, compliments of Chris W. and Michael M.

madlib

Madlibs and a Rubik’s cube, compliments of Charu J.

paperflowers

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!


This video does nothing but make me happy.

Day 5: Can this snap(chat)?

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!

bands


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. ❤

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:

paulsbook

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: Family.

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.

nuna


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