Day 100: Leaning into the uncertainty.

Day +100.

Today was supposed to be a milestone in my BMT recovery process. It was supposed to be the day when all of my restrictions were lifted and I would be able to fully enter into society again as a “normal” person. I’d be able to eat what I want from wherever I wanted, wear contacts, take public transit freely, start working out at a gym again, and even have a drink at a bar. Unfortunately, this isn’t the reality today. Instead, I’m still restricted, fatigued, waiting, hoping for some sign of improvement or stability. Something that may take another 8 months to occur, if ever.

If you know much about me, you know one of my character strengths is that I’m a doer, a man of action. When there’s a need for something, I provide or get it done. This trait originates from, frankly, my lack of patience. I get anxious if I have to wait too long for something. I get antsy at the thought of dragging something out without taking some kind of action. I’m quick to make an efficient plan and I execute it promptly. So all of this waiting around to see what happens with my marrow business hasn’t been easy for me at all. I’m really being pushed to my limits, really being tested for all I’m worth.


To help me cope with these feelings of frustration, anger, and depression, I recently turned to channeling my energy towards embracing this unknown and uncertain time. I picked up Pema Chodron’s When Things Fall Apart: Heart Advice for Difficult Times because, well, I’m going through a difficult time, and there are some pretty good bits of wisdom that I’ve been chewing on lately.

In dealing with my fears of the unknown future, of losing sharp mental faculties and ability for critical thinking, of losing physical strength and stamina for everyday activities, or being merely human, this passage really smacked me in the face and opened my mind to think bigger:

The trick is to keep exploring and not bail out, even when we find out that something is not what we thought. That’s what we’re going to discover again and again and again. Nothing is what we thought. I can say that with great confidence. Emptiness is not what we thought. Neither is mindfulness or fear. Compassion — not what we thought.

Reading this made me think about how I was approaching the BMT and recovery. I had expected the transplant to go smoothly and the recovery to be relatively simple — both of which were true but mainly because the transplant didn’t work. This wasn’t what I expected and I was upset about it (naturally).

In my frustration, I was losing parts of my curious and adaptive self that were good at handling stressful situations; understandably so because, well, my life is on the line here. I was losing sight of the bigger picture and letting myself get wrapped up and consumed with the negative emotions whirring around in my body. [Spoiler alert: not conducive to physical recovery despite lack of substantial scientific proof.]

I’m shifting my focus to accepting the things that are out of my control and trusting that the outcome, whatever it may be, will be what is supposed to happen, what fundamental Christians call “trusting in God’s will.”


Another passage from Chodron’s book:

Life is a good teacher and a good friend. Things are always in transition, if we could only realize it. Nothing ever sums itself up in the way that we like to dream about. The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit. It’s a very tender, nonaggressive, open-ended state of affairs.

There’s a scientific concept about equilibrium in chemistry where in a closed system, though changes can occur, there is no net change within the system, thus the system is in an equilibrium state. But, the universe is an open system; therefore, equilibrium can never be achieved and change is constantly occurring. This is true about life. It is always in flux, always in motion, and we have to roll with the punches as they happen.

I’ll admit I lost a lot of this pliable flexibility when all of this started and became fairly selfish in an attempt to try to take control over a spiraling, chaotic, and scary situation. I had stopped rolling with the punches because the punches were too erratic and too painful. I had stopped being open to the possibilities of life and started demanding and expecting for events to occur in my way at my time. Clearly this has been an effective way of living stress-free. :/

Moving forward, I’ve decided to let go of what will be, something I thought I could control with my knowledge and understanding of science. I’ve decided to embrace the fear and lean hard into the uncertainty of my future. I may never be able to multi-task five things at once again or run a 5k without getting winded. I may never be able to do quick mental math or read for hours on end. These are the harsh realities of my life. But I’m preparing myself to accept what will come and I’m hoping for the best outcome.

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Day 98: This is not where I’m supposed to be right now.

Day +98. Sitting in the clinic waiting for yet another two units of blood and neupogen (hemoglobin 7.1, ANC 0.60). I’m going to be down right honest with you: I’m fed up. I’m tired. I don’t want to do this anymore. Aside from being physically draining, emotionally debilitating, and psychologically crushing, this whole process has been nothing but frustration strung along by small nuggets of false hopes and long hospital waits. This definitely takes the cake for the hardest thing I’ve ever had to do in my life, with no guarantee that I’ll even have a chance to do anything else afterwards.

I think the worst thing about my current state is that we (the collective “we” including my entire care team) don’t know what’s happening or what to expect next. We’re in a chronic state of let’s wait and see. Well, we’ve been “waiting” and “seeing” for the past three months! It’s difficult to remain patient and not frustrated when you want answers, but the reality is there aren’t any. At least not yet.

My marrow is doing this weird thing where it will seem like it’s slowly climbing in counts one week, and then crash out the next. I’ve been trying to connect this trend to my habits, what I’m eating, anything to provide an answer or something to me to do to make this better. But of course, there is no rhyme or reason to it. Frustrating.


In order to keep myself occupied and distracted, I’ve been seeing friends and trying to get out of the city as much as possible. Last week, I visited a dear childhood friend of mine Jenn in Chicago. We had such a good time! Catching up, eating all the things, and cruising around Chi-town.

secondcity

We saw a Second City show called “Game Night,” which pitted the East side of the room against the West side of the room. Led by a snarky but sassy host and four Second City comedians, we, the West side, laughed through a number of old game shows and came out on top as the victors. #champions

bean

You have to visit the Bean when you’re in downtown Chicago. And eat Giordano’s deep dish. And Garrett’s popcorn. And a classic Chicago style hotdog. Did I mention how much we ate?

fountain

A little selfie in front of the Buckingham Fountain.


I had a nice quick little trip to Bolinas, CA with my friend Dan. We did a good bit of walking and seaside cliff hiking around that beautiful, small town. Did you know that most of the Point Reyes National Park is on a completely different tectonic plate than the rest of the US? #sanandreasfault

fog

Karl was in full force that weekend. Misty, calming fog.

pacific

Right off the Point Reyes Lighthouse.


Despite all of the frustration, I’m still humbled by the amazing friends who have been nothing but supportive and encouraging. They’ve really been the fuel to help keep this fire burning. I’m so, so grateful for all of the wonderful people in my life.

With that, I leave you with a few pictures that make me smile.

ferry

The Ferry Building lit up at night is like the North Star. Flanking one end of Market St., it’s a stunning sight for sore eyes.

waldo

A childhood dream come to life! I think I know where to find him!

singleladies

Rodin definitely knew what was up before Beyonce. #singleladies

Day 84: On hold. Still.

Day +84. Two blood transfusions (four units worth) and weekly Neupogen shots have been the latest for this guy. My counts over the past two weeks have been nothing but a source of confusion and frustration. Ups and downs, much like a game of Rollercoaster Tycoon, minus the sadistic tendencies of a teenager who builds an incomplete roller coaster to watch the simulated park patrons crash a burn.

While my counts have peaked and dipped all willy-nilly, my care team has remained fairly consistent with their treatment plan: let’s wait and see what happens. What was originally thought to be a few weeks of “hurry up and waiting,” has now stretched to two months, with the possibility of extending to six or even twelve months of responsive treatment (e.g. getting blood or platelet transfusions and Neupogen shots) before making a call on a second transplant. There have been cases with other aplastic anemia patients where it seems like their donor cells have “disappeared” only for them to “reappear” six to twelve months later. So, while my body has been doing a decent enough job at barely keeping a loose immune framework together, there is still a possibility that my donor will come back in full force and steal the show.


I digress. Onto the more interesting things that have been filling my time in the past two weeks.

I had the awesome opportunity to stay the Meritage Resort and Spa in Napa over Memorial Day weekend with Ricky and his visiting brother, Jake, and sister-in-law, Lindsay. We enjoyed the really nice weather and super sweet amenities of the resort while going to a handful of very nice vineyards.

Kicking my feet up fireside.


We went to Franciscan, Barnett, and Alpha Omega wineries. We had a reservation at Barnett and pulled up to a gated lot. #bourghey. The wine tasting was absolutely fantastic led by a very charming guide. The last wine we tasted was actually pulled from a barrel six months before it was ready to be bottled. Seriously one of the best cabernets I’ve ever had.

The wine cave at Barnett. It was at least 20 degrees cooler in here than outdoors.


At Alpha Omega, we had a good number of different wines and really enjoyed the hot summer day.

You can’t see it from this picture, but they were doing some heavy construction right in front of us. Oh, the wonders of photo editing. #Instagramperfect

napa


This past weekend was pretty phenomenal. Two great friends Matt and Joey got married at the Lawrence Hall of Science. They had everyone hashtag #gaysciencewedding on all social media to be able to track the night’s festivities. It was such a beautiful, fun, science-y ceremony followed by a tasty dinner, a night of dancing, and freshly made mini-donuts! That was the first time in months I had danced and had so much fun. I was definitely the sore the next morning, but it was absolutely worth it. I’m so excited for Matt and Joey in this next chapter of their lives.

gayscienceweddingLooking dapper, per usual. 🙂


The next day, I went on a hike with my friends Susie, Kyle (who is visiting from Boston), and Ricky. Susie, who’s an elementary school teacher, is taking her kids on a hiking/camping trip this week and wanted to plan out the trail beforehand. What a perfect way to gauge if a 10 year old can stand a hiking trail than to bring your immunocompromised and really-out-of-shape friend!

We had a pretty good time figuring out what we were doing while catching up and enjoying the views. We even saw a horse!

ggI love the Golden Gate. Srsly. I do.

horseMister Ed.

Afterwards, we went to Off the Grid at the Presidio for a relaxing lunch at the food trucks, and then I napped hardcore.


For those of you wondering: yes, I did in fact drink at the wedding. And no, it’s not forbidden — I just have to exercise caution and restraint, ergo, two drinks or less. Did I find my way around the champagne for a glass? Definitely. Was Fireball maybe involved at some point in the night? My lips are sealed. All I know is that as of today my counts are no better or worse off than last week.

On a related note, I’ve been beginning to wonder if I can start integrating “normal” things back into my life. I asked my transplant doctor at my last appointment and it seems that, despite my low counts, I’m able to do more than I thought. So much so that I’m going to visit a dear childhood friend of mine, Jennifer, next week in Chicago! I got the ‘okay’ to travel domestically. Things are starting to shape up for this guy, even if the counts don’t seem to read that way.