Day +92. Go call your mom and tell her you love her, today.

Day +92. I’m officially neutropenic (again)! BAH! How’d that happen? My neutrophil count dropped to 0.32 x10^9/L which is way waaaay low. Like borderline critical levels low. Thankfully everything else (RBCs, platelets, other white blood cells) held constant since Monday. I got a low dose (300mg) shot of neupogen to boost the production of neutrophils and I’ve started a new antibacterial medication – levofloxacin. Though we’re not completely sure why this is happening, we think it’s still due to a different antibacterial medication I was taking but stopped about two weeks ago (septra) which is known to be rather myelosuppressive. Last summer when I stopped taking septra, it took about 3-4 weeks for my white counts to come back up so there isn’t a huge need to be worried, but it’s definitely not ideal. Till my next lab draw, I’m still on public/crowd restriction, no untrustworthy outside food consumption, and lots of rest. *sigh*


I just dropped my mom off at the airport and she’s on her way back to El Paso. I’m actually sadder than I thought I’d be. Much. sadder. Like, my eyes are red, nose is raw, and I’ve-gone-through-half-a-tissue-box-already sad. I think I’m most sad about sending my mom home when my health is back on the rocks, and I don’t mean with a twist of lime.

It breaks my heart to say bye to her when I know she’s worrying about what’s going to happen, what I’m going to eat everyday, how I’m going to fare, who’s going to check in on me; you know, basic mom thoughts. I wouldn’t be sending her home if my care team and I weren’t confident that I’m able bodied enough to take care of myself, but it still makes me sad to know she’s constantly worrying.

Anyway, I’ll be alright. I’ll keep trekking on. I’m gonna make it. I’m surrounded by an amazing network of friends, my family is just a Facetime call away, and if anything, flights to SF are easy to get from El Paso.

If you’re one of the fortunate ones whose mom is still alive, pick up the phone and call her. Tell her you love her and tell her you’re thankful for everything she’s done for you, no matter how much or how little that may be. Regardless of how good or bad your relationship is with her, without her you wouldn’t be here. At the very least, thank her for being your incubation chamber while you were being formed.


Win each day.

 

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Day +85: No, I didn’t win the Powerball lotto.

Day +85. My counts dipped today back into the “let’s be careful with everything again” range. Food restriction, public restriction, and more rest are in order. Over the past few weeks I’ve gone from the yay, I’m seeing progress every doctor’s visit to yay, we’re playing games with my meds to keep my counts in a good range. This week happens to be a low week due to a different antibiotic that I switched to recently (to Septra from Dapsone) that’s more strongly immunosuppressive. Also, the immunosuppressant I’m taking, cyclosporine A, was relatively high in my blood.

To break it down:
High immunosuppression (via drugs, etc.) = less functional marrow.
Less functional marrow = lower blood counts.
Lower blood counts = more tired Min who’s cooped up inside.

These things compounded together, plus some other things that’re prolly going on but are not graft failure *crosses fingers and does tribal rain dance*, help explain the drop in counts. But I’m not discouraged. I was never guaranteed at any point that my counts would ever completely stabilize during the recovery process. Heck, I’m not even guaranteed at any point in my life that the graft won’t just decide to fail, randomly. #BMTtransplantproblems

Overall though, my health has been on the up and up! Despite my right ear still being 50-80% deafened (still waiting for my ENT appointment) and the sparse rashes/red bumps on my torso/head/neck, I really don’t have much to complain about. I’m still super grateful that I haven’t experienced any of the more severe GVHD symptoms (e.g. vomiting, diarrhea, cramping, excessive nausea, etc.).


Apologies for being so slow (lazy… tired?) to post updates! I’ve been getting out more to walk and do things in public. I unfortunately didn’t win the $1.5bn Powerball lotto though.

I went grocery shopping. Never thought it’d feel good to say that. I saw movies, in the theater. Star Wars and the Revenant to be exact. Exciting and gruesome, respectively. I played tour guide. For my mom. I took her out for a hair coloring and dinner for her birthday. I also got a rental car and we picnicked at Half Moon Bay, took in SF views at Twin Peaks, and drove over the Golden Gate Bridge. She really enjoyed the beach at HMB. She said it reminded her of where she grew up in the motherland by the same ocean (see: Pacific Ocean). I’ve been catching up with friends over coffee, ice cream, and meals. Slowly but surely getting back into a rhythm and re-crafting my independence/life.


My mom leaves next week. It’s crazy to think that she’s been here for just under three months. She was very resistant to booking the flight, but really I think it’s time for her to go. Not because we’re fighting or that I don’t want her here because honestly, it’s so nice being pampered by the woman who birthed you and knows you best. Breakfast made first thing in the morning, lunch ready to go, and dinner hot and served when you sit at the table. Who could complain about that?

I feel though, at this point in my recovery, I’m unable to keep progressing with her here. Sure, the special treatment has been super helpful and absolutely wonderful, and I’m beyond grateful and have a new appreciation for parents/my mom, but I’ve reached a point now where I need to start doing these things for myself. It’s really difficult to tell my mom, “No, I don’t want your eggs and bacon, I’ll have my granola and yogurt instead,” as she waltzes into my room with a tray for breakfast in bed. Who doesn’t like breakfast in bed?

There’s really no other way to break into independence than to jump into it head first. I’m well enough and strong enough to go grocery shopping, do my own laundry, and go about doing simple daily tasks — trust me, I’ve test run everything. The sooner I can get back into the routine of taking care of myself, the sooner I can get back to feeling normal and to living my life.


Now, this is all great and dandy and idealistic, but I’ve been burned before and I won’t let it happen again. I’m still being very cautious and careful with myself, taking as much rest as I need. I’ve gotten really good at listening to my body. What’s that you say? You’re tired from walking yesterday? That’s okay. Let’s binge watch a whole season of ‘Happy Endings’ today. Feeling a little achy? Let’s stretch it out and take it easy today. [The internal monologue I have with my body is ridiculous.]

Another great perk of progressing further in my recovery is that my brain is clearing up too! I solely base this on the fact that my personality (see: sass) is ramping up and the quick comebacks have resurfaced in conversation. #checkyoself


 

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At the Golden Gate Bridge. 🙂

Day +68: Ring out the old, ring in the new!

Day +68. My counts were steadily increasing over the past few weeks and were so damn close to breaking into the normal range, and then they dipped a bit setting me back two weeks. I’m frustrated but not discouraged just yet, despite my brain going to the *crazy place* frantically worrying if the graft is suddenly failing, again. It remains to be seen if this is graft failure or just a hiccup in the progress. Either way, we’ll have to see how things continue to progress over the next few weeks.

Still battling off GVHD rashes. The worst are ones that appear in my arm pits. 😦 I’ve been taking it very easy physically as well. I’ve had a fair amount of body aches that have left me fatigued and cooped up in bed for days. Even though this is the most blood I’ve had in my body for more than 15 months, my weak body is still working to regain normal stamina and to rebuild strength in my unused stabilizer muscle groups. Also, it doesn’t help that El Niño has made this winter one of the coldest in SF history. So freaking cold.


 

I’ve always been a huge fan of New Years. It’s a time when you gather with friends and loved ones to celebrate the past year of life and welcome the upcoming year with open arms, and champagne. I used to love reflecting on the past year, with all of the successes, failures, heart break, tears of joy, pangs of sorrow that happened, and smiling at how wonderful life is. I’d be the first of my friends to ask what people’s resolutions were because I had so thoughtfully spent time thinking about how I wanted to better myself for the upcoming year. I usually had a list of about 4-8 resolutions, each carrying significant reasons for why they’d made the cutoff (of, like, the 20 resolutions I had brainstormed).

But this year, was different.

I wasn’t excited to get dressed up for any party and socialize with people, to stay up until the clock struck midnight, to shout Happy New Year, to raise a glass of bubbly, to kiss my boo on the lips, to lead the group in a drunken rendition of Auld Lang Syne (one of my all time favorite holiday songs, jsyk). I couldn’t be bothered this year. In fact, I barely made it to the East Coast New Years. I watched the ball drop, sent Ricky on his way to a friend’s party, and then I promptly went to bed at 9:30PM PST.


What made this year so much less exciting than all of the previous ones? Aside from the body aches, immunocompromised physical state, and overprotective mother, what internally was different?

I felt defeated. Completely and utterly defeated. I didn’t see 2015 as a success or a victory. Instead, when I looked back on 2015, all I could think of were the hours spent at the hospital, the rough bouts of chemo I endured, the number of days when I was bald – not by choice, the fatigue, the malaise, the countless number of pills I’ve swallowed, the shots, the biopsies. Allllll of the things, albeit life saving things, that slowly chipped away bits of my humanity, slivers of my sanity, flares of my personality, until there was nothing left but a defeated, drained body.

And this, made me sad. And it made me cry. And it made me depressed for a few days. I didn’t want to be bothered to do anything, or talk to anyone, or even shower (!). But, I knew I couldn’t go on living like that. My recovery was going well and too many people believed in me for me to selfishly just give up that easily.


With the help of Ricky, and a mantra I had adapted in the earlier days of this illness (more than a year ago now!), I reminded myself that every day is progress, each week a victory. What I also had to remind myself was the “progress” and “victories” that happen aren’t always going to be what I imagine them to be. Touché, life. Touché.

So, my New Years resolution this year (there’s only one) is to: Win Each Day. Such a vague, non-action item resolution that basically leaves everything open to interpretation, but I like it. Winning on any given day can be a different thing. One day could be doing laundry. I won finishing laundry. On another day it could be finally consolidating my student loans. I won student loans. Psh, that’s a lie. On days that I feel like I’ve not won, at least I can say I tried to win anyway.


P.S. I got my Hickman catheter taken out last week! It’s been such a joy not having my octopus arm bothering me in the middle of the night when I roll over and it gets stuck. And the liberation from having to flush the triple lumen each day is so freeing! I’m a new man, with a new scar on my chest that looks like a third nipple. #2016

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My mom and me at Union Square. 🙂