Day +277: A twist in the plot!

Day +277. Hi there. It’s been a while. Idk if you remember me, but I’m the guy who randomly got severe aplastic anemia two years ago and received a bone marrow and stem cell transplant last year. Yeah, that guy. I realize it’s been a hot minute since I’ve last written, but that’s because I’ve been trying to live life as normally as I can. My body has been stable, counts are stable, we’ve officially stopped the immunosuppressive regimen (Cyclosporine if you recall) and will be stopping some other drugs in two weeks, we’ve been continuing phlebotomy every two weeks taking 1 unit of blood to lower my iron overload (from all the blood units I received last year), and I’ve been trying to get myself back into to shape!… Okay, maybe I haven’t been doing that last one very well. Either way, things seem like they’re on track!

Rewind to two weeks ago: I woke up with a scratchy throat which persisted for two days, and on the third day the scratchy throat was gone but I had full blown sinus congestion for two weeks. I was taking Sudafed religiously hoping it would pass, and never once did I have a fever. Until yesterday. Sometime in the afternoon, I was shivering and burning up, spiking a fever at 102.5! So, I did what any good transplant patient would do and called the clinic to see what I should do. I was advised to go to the ER.

Thanks to my lovely roommates Danika & Chris, I was able to get to the ER in less than 10 minutes. After being shacked up for 6 hours, during which time they drew labs, gave me some meds, collected a few samples, and took a chest X-ray, I was admitted to UCSF Parnassus for a bacterial pneumonia. Yep, that’s right. I caught pneumonia (sooo less exciting than catching Pokemon). The X-ray showed a bit of cloudiness on my lower left lung. How this happened, I’m not quite sure. I think after getting my second round of immunizations two weeks ago, my body was weakened from recovering from the shots and a little bug crawled right in!

Anyway, I’ve been doing alright so far. The biggest pain has been trying to alleviate the body aches I get whenever I spike a fever. I’m on a doxycycline and zosyn (piperacillin & tazobactam) antibiotic regimen while taking tylenol for fever control and oxycodone for body aches. I’ll hopefully be able to go home tomorrow, but it all depends on how I fare tonight. I’ll keep you guys posted!

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Meet Brenda! Adam & Steve’s cousin. She’s much less rambunctious and needy than her relatives.

 

Day +204: Welcome back, Me.

Day +204.

Two weeks ago I had my first round of phlebotomy: historically, the procedure of letting blood. We started this to begin alleviating the high amount of iron in my blood from all of the blood transfusions I received last year. Essentially, I’m “giving back” the blood I borrowed to stay alive. We only took 200g (roughly 200mL) of blood which is just shy of a whole unit, about 250mL. We wanted to start off with a lower amount removed for the first pass to see how my body would tolerate it. I’m excited to say that my body is doing just fine! Blood counts are stable, no light-headedness or headaches.

Beginning next week we’ll begin phlebotomy every other week until my iron count gets back into the normal range, which my guess will be about 6-7 units worth of blood to be removed. I managed to get a little clip of the blood collection. There’s nothing graphic, just a bag being filled with deep, red blood. 😉


The past few weeks have been, well, amazing. I’ve been back at work now for a month and it’s been so great getting into a routine again and using my brain. Just being able to use my brain has been so wonderful too. I’m really glad to be past the days of super foggy mindedness. With that, I’ve been biking to work, making plans with friends, cooking, and even baking! I’m proud to say I’ve slowly, but surely, been reintegrating aspects of my life pre-diagnosis back into the my life post-treatment.

This has been such a welcomed change of pace from the onslaught of unstable, wavering news I was getting week to week just one year ago. I’ve been continuing to process through a lot of the emotional trauma from the past year, as well as think about my future and what that means. I’ll be completely honest with you, having even the remote possibility to think about a future is a gift; it’s a gift one should never take for granted. It’s also a mood booster – take my word for it.

While I don’t have everything anything figured out, I’ve focused a lot of my time doing the things I love (e.g. dinner parties, exploring SF, seeing musicals – The Last 5 Years!!, going to museums and galleries) and spending time with people I care about.  *Cue snapshots from the past few weeks*

Till the next update, carry on!

Day +180: Milestones.

Day +180. I made it. We’re here. One-hundred and eighty days post transplant and the graft is stable, things are looking good, and life is slowly returning to ‘normal’. I look back to the last “day +180” from the first transplant and think about how differently things went this time around. Nothing quite sums up the relief, gratitude, and peace of mind I feel than, “Whew. It’s working.”


Other than day +180 being a huge milestone, a few other things have happened in the meanwhile.

I turned 28. Yep, I’ve officially entered my late 20s. To be honest, my birthday this year was pretty anti-climactic with day +180 being a few weeks later. Ever since having the transplant, major holidays and celebrations that once were important just aren’t as meaningful to me anymore. Because so much of the last 18 months had me on a tumultuous roller coaster of extreme highs and deep lows with blood counts varying week to week, the significance of dates and events shifted to health “wins.” That’s not to say I didn’t celebrate my birthday, don’t get me wrong. I was treated to a fancy, delicious dinner and trips to a few museums & Alcatraz by Ricky; had an amazing home cooked meal from my roommates; a relaxing afternoon in the park with the old BAL crew; a joint birthday shindig with Isaac; and a bunch of wonderful birthday cards and gifts from some lovely friends both here in SF and around the world. I think #year28 is off to a great start.

I returned to work. The wonderful people in the Weissman and Walter labs welcomed me with open arms this week as I came back to work. It’s be so wonderful getting to catch up with people, meet the new folks, and see how everyone has been doing. It’s been great getting back into a daily routine and having somewhere to be. I’m excited to really jump into a new project to get my brain juices flowing again. 🙂

I had my first round of immunizations. I’m as immune as a 6 month old baby! That’s right. This week, I got five shots which comprise the first set of immunizations for a stem cell transplant recipient, or infant. TDaP (tetanus, diphtheria, pertussis), polio, hepatitis B, Hib (haemophilus influenzae b), and PCV13 (pneumococcal conjugate vaccine 13). The shots didn’t hurt too badly, but my arms were sore for a few days afterwards. The next few months I’ll be getting more shots to help gain immunity against these nasty bugs. The worst part: I didn’t get a lollipop.


Overall, life is slowly getting back to normal as I’m reintegrating things and rebuilding myself. I’m excited for the next few weeks and all the exciting things to come!

Day +162: Stability.

Day +162. My counts are still stable with the HgB at 11.5 g/dL, WBCs at 4.5 x10e9/L, ANC at 2.18 x10e9/L, platelets at 143 x10e9/L, the latter three all in the normal range. My body still doesn’t seem to like making RBCs, but it’s doing the best it can with elevated reticulocytes (RBC pre-cursors) at 100.5 x10e9/L.

Overall, my health is good, stable. I’m currently combatting a few graft versus host disease (GVHD) things like skin rash (which looks like goose bumps, everywhere) and some other things that have popped up since I’ve been immunosuppressed that I won’t get into. Lately, most of my focus and energy has been dedicated to getting back into physical and emotional shape. I can’t say that any part of this process has been easy, but the past few weeks have been pretty tough. I know I can run 5 miles or work out for an hour, but my body’s not fit enough for it yet, and this disconnect is super frustrating. As with any person who is trying to get back into shape, perseverance and commitment are crucial to achieving one’s goals, but I’m having a hard time drawing a line between laziness and overexertion. So, I’m learning to accept my current state and to press forward.

I’ll be returning to work in about a week, and I’m pretty excited! I’m ready to get back to a regular schedule and start doing more productive things with my time and my brain. I’ll be returning full-time, and I’m confident I’m ready for it. Hopefully all the yoga and outside activities I’ve been doing have prepped me enough! 🙂

If you haven’t noticed by now, I’ve been posted much less frequently than before. My motivations for this are two-fold: 1) because my health is stable, there is less to update friends and family with online; 2) I’ve been focusing on spending more time and energy on myself whether it be going out for walks, journaling, or spending time with friends. I will keep writing updates periodically as my condition improves (or worsens!), but I won’t be writing weekly anymore. I would like to take this time to thank you, dear reader, for your interest and time in reading and keeping up with this epic saga. I really can’t express how grateful I am for you, whether I know you or not, for putting forth your energy and existence into the universe; it really has helped me more than you know.

 

Day +136: Rainy days.

Day +136. It’s been a little over three weeks since my last post and quite a few things have happened! I finally have a chance to sit and write because of the calming rain here in SF, but first, a quick health update. It seems like my counts are fairly stable where they sit, which is a little on the lower side of normal. That’s okay because my new marrow may just produce at a lower level (which is waaay better than not producing anything at all!). We’re still tapering off the cyclosporin slowly. Once I’m completely off of it, we should expect the counts to rise some more so that’s something to look forward to.

Otherwise, I’m getting out and about doing more things, gaining more strength, and having more energy. My goal is to be back to work by mid-April which I think gives me enough time to further increase my stamina for activities, to start getting back into an exercise routine, to begin thinking critically again, and to sort out all of the mixed emotions that were left unprocessed since last year (a huge feat which has been difficult to get through).


More on that: 2015 was a crazy year for me. Having gone through a bone marrow and a stem cell transplant, battled severe anemia and survived on the 30+ units of blood from strangers (aka I was a vampire), and dealt with some harsh heartbreak and disappointment, most of the year went by without my noticing. I woke up each day not thinking of the next, but focusing on getting through the whole day. My emotional state for most of the year was neutral, numb. Sure there were peak highs and deep lows at times, but for the most part I kept even keeled and calm.

I’ll tell you, it’s extremely difficult to process through all of the emotions when you’re trying to stay afloat, and by afloat I mean beating chemo brain. I’m utterly amazed at how foggy things are when I think back to any of the time post-transplant(s). How did I function? How did I do anything I needed to get done? How did I maintain any relationships with people? The truth is, I didn’t. I feel like I was an empty body struggling to do “normal functions,” to keep it “together.” Even as I write this now and reflect on just a month ago, it surprises me how much clearer I can just… think.

And with this thinking and reflection come memories of things left unfinished, unprocessed, unfelt. Things that at the time didn’t get the proper attention they required because I needed to focus on eating or taking medicine or my next appointment. There are so many relationships that were left to wither as I became withdrawn and private; rightfully so because it takes two to tango for any relationship. I am and will forever be grateful for all of my friends and family who have supported me and stuck by my side through arguably the hardest thing I’ll ever have to face in my life. Now, though, I feel this strong need to repair and rebuild what was lost, and to repay people somehow, even though I know it’s impossible. These are things I’ve been reflecting on the most as of late.


In other news, I recently got back from a little trip to Austin to visit some good friends of mine. My friends Katie and Amanda so graciously hosted me and Ricky on our visit, and their friendly rescue Vickie was great company too. I got to see an old friend from high school Angeline, who I haven’t seen in ten years (geez we’re old), and old college buddy Daniel and his wife Logan.

Here are a few choice pictures from the trip:


Last night, I had the honor of sharing my story at the Asian American Donor Program‘s (AADP) 9th Laughs for Lives Comedy Benefit. The AADP is a fantastic program that seeks to match patients who are in need of a bone marrow or stem cell transplant with a donor by hosting marrow registry drives and encouraging people to join the registry. They focus on Asian-American and other non-white populations because these are the populations have the highest need with the lowest number registered.

There were a number of hilarious comedians performing stand-up comedy at the show, both professional and amateur. Right before intermission, myself and a stem cell donor Andy were called to the stage to share about our experiences as a recipient/survivor and donor, respectively. I talked about how/when I was diagnosed and how this transplant has changed my life. It was really humbling to share some of my story on stage and how I really feel like I have a second chance at life.

Anyway, here are some pictures from the event:

If you haven’t done so already, I urge you to join the bone marrow registry no matter what racial ethnicity you are. You could seriously be saving someone’s life one day.

Day +113: Keeping on keeping on.

Day +113. A drop in hemoglobin to 10.2 g/dL which is the lowest it’s been since Thanksgiving, and a dip in neutrophils to 0.96 x10^9/L (mild neutropenia). Platelets have been stable and holding strong!

My lower counts are a bit confusing this week since we’ve been slowly tapering down the cyclosporine (immunosuppressant) drug for the past month now. Remember: less immunosuppressant = more active marrow = more cells, in theory. What is encouraging, however, is we see a marked increase in reticulocytes (premature RBCs) indicating that my body senses the drop in RBCs and is working hard to make new ones. We’ll see what happens over the coming weeks. As far as the lower neutrophil count, like I said last week, some donors (especially of Asian descent) exist in a lower range so that may be my reality.


This past weekend was Valentine’s Day (VD), or as I like to refer to it Single’s Awareness Day (SAD). Though I wasn’t celebrating the single-ness of the day, I’d much rather be SAD than have a VD! *ba dun ch*… I digress.

Ricky and I spent the day being domesticated and braving the insane crowds at IKEA to enjoy Swedish meatballs (obv) and purchase a strainer and park blanket bag. We saw Deadpool and had In N Out for dinner. Quite the exciting day — and super exhausting. I was a stumbling zombie by the end. (Maybe the overexertion/stress caused my cell counts to dip? Who knows!?) Either way, I would highly recommend going to see Deadpool if you’re over 17 and enjoy witty, gritty, gruesome, rather violent, fourth-wall breaking movies. Otherwise, Zootopia’s a good runner up.

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These definitely brighten anyone’s VD. Courtesy of Ricky. 🙂

 

Day +106: Let’s goooo marrow!

Day +106. Today, I received the results from the recent chimerism test (taken around day +90) and bone marrow biopsy. So far, I’m still 100% donor — peripheral blood cells, B & T cells, and neutrophils — and the cellularity of my marrow is between 20-30% with definitive presence of maturing cells for all lineages. This. is. huge.

The reason why this is huge: in previous bone marrow biopsies (BMBx), specifically the first one I got which helped my care team determine I had severe aplastic anemia, my marrow was severely hypocellular meaning there were <10% cells in the marrow and no signs of any maturing cells. Even the biopsy I got after the BMT graft that failed last summer before the SCT this past fall showed marked hypocellularity. FYI, A normal healthy 20-something has ~50% cells in their marrow, with the other ~50% made up of fat, muscle, bone, fibrous, and other types of cells.

So, I’m ecstatic to say that the SCT is successfully working so far! My counts have been fluctuating week to week, with my RBCs dropping a bit this week, but overall it seems that my cell counts aren’t crashing and are in a safe, albeit low, range. I’m hoping as we continue to taper down the cyclosporine and finish off the prophylaxis drugs (some of which are immunosuppressant too), we’ll see the counts rise steadily into the normal range and everything will be peachy. *fingers crossed*


Lately, I’ve been getting outside more and trying to walk as much as I can. I’ve been playing this balancing-act game with my body. I want to push myself to increase my physical stamina on a day to day basis, without pushing too hard to knock me out for the count. So far, I haven’t been very successful. I’ve overexerted myself a few times which leaves me tired and recovering in bed for a day or two afterward. I’m starting to get the hang of it though, and I’m better aware of when enough is enough and I should rest or stop what I’m doing.

Recovery is a double-edged sword and is proving to be one of the most challenging processes I’ve ever endured so far. Mentally, I know I should be able to clean my room, do my laundry, walk a few miles, cook all my meals, make and keep plans with friends, and work out in a single day, but in reality, the day is a win if I get two of those things done in a day. So, it’s a slow process. A slow, long process.

 

Day +100: We have arrived.

Day +100. We made it. I’m here. The beginning of the next phase of recovery in which any new symptoms that occur are officially chronic GVHD (vs. acute). Aside from the acute GVH symptoms, I should also look out for loss of flexibility, joint achiness, dry eyes, dry mouth, and new rashes. So far, things are looking good. I’m still [relatively] flexible, haven’t needed to call Ben Stein, and don’t have any new major symptoms. I hope it stays this way.

Counts from my appointment yesterday were stable with the neutrophils bumping back up out of the danger zone. Whether it was totally due to the neupogen or because my cells recovered, we’ll never really know. I’m just happy that I’m not on house arrest anymore though I’m still being cautious. My doctor had mentioned that transplant recipients of asian descent tend to have a lower neutrophil range in general and some people happily exist around 0.5 x10^9/L. We won’t really know what my “normal” will be until I’m completely off the cyclosporine and the other prophylaxis drugs. So, for now, we wait and see. Shocker.


My how different this day +100 versus the previous one is! If you recall, the previous day +100 post-BMT back in June was a rough one for me. It was officially known then that the graft had failed and the plan was to wait and see if the chemotherapy was sufficient enough to “jumpstart” my own immune system into working. [[Spoiler alert: it didn’t.]]

I was really frustrated and down on myself about the prospect of the future and what that meant for me. I picked up a book, Pema Chodron’s When Things Fall Apart: Heart Advice for Difficult Times, to help process and cope with the reality that I might have been living my last days. I was inspired and reenergized by the words of Chodron and turned a new leaf with my outlook.

Today, I can’t say that I’m in much better shape. I mean, yes! physically, the SCT worked and I’m still 100% donor, and yes! emotionally, I’m supported by my amazing friends and family who keep inspiring me to move forward. But mentally? I feel completely confused and unable to sort things out; stunted if you will.

Don’t get me wrong, I’m beyond-words grateful for this second chance at life, but where does one go from here? How does one “go back to being normal?” How does one rebuild a life? What is normal? What are the reasons why I was given this second chance? Is there more than one reason? I suppose I’m dealing more with an existential crisis rather than needing to cope with my mortality — something I’m pretty good at doing by now — so this is a bit different than last June. But, is there a reason why I’m still alive? I can’t just chock it up to luck or chance, though modern medicine has really played a huge part in this all.

Call me a typical twenty-something or just human. I’m sure everyone thinks about these things and part of living life is getting to find out the answers. But I’m pretty impatient and would like some hint, a sliver of guidance, a whisper of direction, something. I know eventually everything will click and it will all make sense, or it won’t. Either way, I’ll just keep going on, one foot in front of the other, one day at a time. Because, really, what other choice do I have?


To end this strikingly uplifting post, I leave you with a poem.

The Line

There is a line on my nail beds.
A line that tells me when I died, and where I begin.
You see, it’s weak, sickly, odd.
It’s a marker showing when chemicals flowed
In my body
And quenched the remaining fighters.

There is a line on my nail beds.
A line that reminds me of my mortality.
You see, it’s darker, weaker, discolored.
It’s fragile and at a moment’s notice
It’s easily taken
And then it’s gone. Forever.

There is a line on my nail beds.
A line that masks the internal struggle.
You see, it’s proud, strong, vulnerable.
It doesn’t want to worry or bother,
Make you uncomfortable,
And it’s my fight to win.

There is a line on my nail beds.
A line that ushers in new growth.
You see, it’s young, steadfast, ambitious.
It wants to carpe diem and go!,
Exploring and living,
And making the most of life.

There is a line on my nail beds.

 

 

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.

 

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. 🙂