Day +132. Sitting in the clinic getting another two units of RBCs. Weekly transfusions have been the name of the game as of late, as are weekly Neupogen shots. The course of treatment so far has remained the same. At my weekly appointments, I play a mean waiting game to get shots and blood. But by now I’m an expert player, knowing to bring my laptop to keep me occupied. We’re currently in the process of identifying and confirming a second donor, another 10/10 HLA-type match. In the event that we’re unable to confirm them, we have a few 9/10 matches who are ready to go. This wouldn’t be the worst case scenario, but it definitely isn’t the most ideal. For now, more waiting.

Apologies for the spare postings. I’ve found that the days blend together and smush into weeks that overlap and compound into months that pass all too quickly. I would be lying if I said I was functioning at 70%. I’d be lying if I said I was even at 50%. I can confidently say I’m running at a solid 35%. But, I suppose that’s to be expected considering I have about less than half the amount of hemoglobin in my body than normal. And so it goes.

The latest piece of news is, as of last week, I’ve started back at work full time!

It’s been super exciting to jump right back into the project I was working on before leaving for the transplant back in February. We’re in the throws of wrapping up a paper and I’m stoked to finally get our work out there.

It has been a bit of a struggle to wake up and be fully ready to go in the mornings, but thankfully caffeine is an amazing stimulant and helps so much with getting my brain up to speed. I have been needing more down time after work though, and I’ve needed to go to sleep earlier. But overall, I’ve really enjoyed getting back to work and reestablishing some sense of normalcy again.

This week, I’m headed out to the Bean (Boston, if you’re unfamiliar with the lingo) to visit some friends and to show Ricky around my old stomping grounds. I’m super excited to be back in the city where I found myself and to see friends I’ve missed dearly. More updates to come from the trip!

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.

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

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?

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

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

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.

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.

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

Rodin definitely knew what was up before Beyonce. #singleladies

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

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.

Looking 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!

I love the Golden Gate. Srsly. I do.

Mister 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.

Day +70. Encouraging news from yesterday — my counts have increased (ever so slightly)! I was super excited and very overwhelmingly happy when I found out. The implications of this are two fold, assuming the counts weren’t a fluke since they can vary so much: 1) my immune system has stabilized and is no longer dwindling its way out the door; 2) my own immune system has started to flourish on its own, despite the chemo, and will eventually repopulate itself. Very, very exciting. And so relieving. I’m not going to lie, I was getting very discouraged and frustrated at the fact that none of the treatment had worked in helping me get better. But this, this is a sliver of hope, which at this point I accept with open, grateful arms. 😀

This week I’ve watched eight movies. Eight — I decided to keep track this time. They include: Selma; The Invention of Lying; While We’re Young; Insurgent; The Prize Winner of Defiance, Ohio; The Mirror; The Longest Week; and The Lego Movie. I never realized how much media I consumed until I started keeping track of what I was doing. Damn! So many TV shows, movies, aimless internet perusing. Granted my brain still isn’t at fully functioning capacity quite yet, but this addiction to constant stimulation via the interwebs is, quite frankly, unstimulating.

In an effort to revisit past hobbies and make better use of my time, I’ve been trying to force myself to do more whether it’s “productive” or not. Logic puzzles, coloring books, crosswords, sudoku, baking, all fun stuff! But to be honest, all of those things only hold my interest for so long.

I’ve spoken with my care team and it seems that I might be able to go back to work soon if my counts stabilize and/or increase over the next few weeks! This forced vacation, as luxurious as it has been ::sarcasm::, will finally come to a close for now and I’ll be able to go back to having something to do! I’m actually really excited at the prospect of going back to work, to establish a sense of normalcy and purpose again. Not to say that there hasn’t been a purpose in my recovery period, but I’d like to be able to focus my attention on something other than figuring out what to do for the day.

Here’s to a vibrantly robust, youthful body which is stubborn and doesn’t take help from a gracious donor! 🙂

Day +62. My counts are continuing to trend downward with my neutrophils dipping into the danger zone. I got a shot of Neupogen to help boost those numbers today.

You know the old saying when it rains, it pours? Whelp, I think my garden’s been drowned out with all of this excess water. I get it, Life, I really do. I’ve gained an even greater appreciation for living, loving, and forgiveness. I’ve come to terms with the worst case scenario through all of this — death — and I’m okay with it. I’m draining my insurance company for almost every last penny they’re worth with all of this treatment. I. Get. It. Can we now buck up and get it together? Can we move out of the storm and into shelter? The moon is cute and romantic and all, but when is the sun going to come back out? (According to Annie, it’s tomorrow but I’m not sure if I believe her anymore).

This week has been one of emotional upheavals and intense processing and acceptance. Aside from dealing with the frustration, irritation, and annoyance from my graft rejection, I, again, have been disappointed by my family, specifically my parents, in a time of great need. Sparing you the complex details, though they wish me good health, they have expressed that they will not support me in the only way they can right now, unconditionally. The situation is saddening and discouraging, but given my current state it is better to surround myself with friends who will support and encourage me than to expose myself to negativity.

I am constantly overwhelmed with immense gratitude and humility for all of the wonderful, beautiful, loving human beings in my life, near and far. I seriously wouldn’t have the strength to get this far on this journey, dealing with all the crap I’m handling without each and every single one of you. <3

Graham sent me a link to these beautifully designed and poignantly written cards for people to give to loved ones experiencing a health crisis when they don’t know what to say. Emily McDowell just launched a new line of Empathy Cards. See them below. I’m seriously loving them.

She’s a cancer survivor herself and has released a line of 8 cards. She plans on releasing more cards in the future. I want to contact her and submit card ideas.

Lastly, I’ve been indulging myself in a lot of pastry lately (obv). My most recent addiction: Mr. Holmes Bakehouse. They’re famous for their cruffin (croissant + muffin), which is seriously, seriously out of this world! They have a different unique filling each day with two specialty donut flavors as well. The picture below is their “Madhatter’s Tea Party Cruffin” (chocolate earl grey tea custard topped with meringue and chocolate pop rocks), with vanilla cream and chocolate peanut butter cream donuts in the background. This picture gave me a little Instagram fame, nbd. I’m seriously addicted. Plus, it’s a short walk from Ricky’s! 🙂

The two most dreadful words I could possibly hear right now: graft rejection. That seems to be what’s happening according to my counts and chimerism percentages. My last post was written when I stopped all of my immunosuppressant medications with the hopes that the donor cells would be allowed to grow and begin flourishing, keeping an eye out for GVHD. That was about 10 days ago. Since then, my counts have continued in their descent. Thankfully, not to a dangerous range, but still trending downwards. Frustrating.

I saw my doctor today and he leveled with me. It appears that the graft is not holding in my marrow. My immune system, despite having blasting it with a pretty strong immunosuppressive chemo regiment pre-transplant, is attacking the donor cells as well. Basically, my body ain’t got no time for no one.

So, what’s the course of action? My doctor said that we’re going to hurry up and do nothing. So, more waiting. The plan is as follows:

Min’s sAA Post-Transplant Treatment Plan, v3.0

1. Track my blood counts and donor chimerism percentage for a few weeks and see if they stabilize; ‘they’ being my counts. If this happens, then no other major course of action needs to be taken except monitoring my counts, until I die, and treating as necessary (e.g. blood transfusion, platelet transfusion, neupogen, etc.)

2. If my counts never stabilize and continue to drop, we’ll check to see if my body has developed antibodies against my donor’s blood.

2A. If I don’t have antibodies against my donor, we’ll try a stem cell transplant and see if that helps.

2B. If I do have antibodies against my donor or the stem cell transplant doesn’t help, we’ll have to find a new donor and re-attempt the marrow transplant. The chances of having a successful graft on the second try is low, but it’s better than doing nothing. Additionally with the second transplant, I will have to undergo full body irradiation in addition to the chemo regiment pre-transplant to ensure that everything single effing cell is obliterated and we start from scratch.

Needless to say, I’m upset about all of this. Particularly, I’m pissed. Mainly because I expected, wished, hoped that the transplant and this recovery period would be the extent of my treatment; all would go well; and I’d be back to my “normal” life come the fall. Now, it doesn’t seem like that’s even a possibility anymore. I’m so irritated with my body and how stubborn it’s being, rejecting both my old and new immune systems. I’m frustrated about the prospect of this physically, emotionally, spiritually, and fiscally draining process dragging on for many, many, many more months. I’m tired of having nothing but concerning and discouraging news to tell my friends and family who all just want me to get better. When will this end?

*sigh*

Despite all of the not-so-great news and boat loads of emotions, my friends have really stepped up and have been nothing but supportive. From brunches to coffee dates; homemade pasta dinners, full casseroles, and simply vegging and watching movies; house sitting, rides to my appointments, and feeding my addiction to froyo, they’ve been there. I’m so, so humbled by everyone’s willingness to listen, to comfort, to just be there during a time of great need. Giving without expecting anything in return, being a firm hand of support when I stumble. I’ve been blessed with more than I know what to do with and the only thing I can offer is humble, tear-filled thank you. I love you guys.

A few pretty pictures I’ve managed to snap over the past week. I should do better about snagging more.

The view from Graham’s dining room window. Stunning at sunset.

Helen Putnam Regional Park for a midday picnic.

Coffee and donuts with Kayla at Crissy Field Beach. The Golden Gate never gets old. srsly.

Day +48. Just got the results from the most recent chimerism test of my cells (T, B, and neutrophils) and the percentage donor cells dropped from 42% overall to 5% overall. Not a good thing. This helps explain why my cell counts have been slowly dropping over the past two weeks, in addition to some of the drugs I’m taking which are known to lower counts. By the way, my counts have been steadily dropping over the past two weeks. Nothing is in the critically dangerous range, thankfully, but they have been trending downward.

The plan moving forward is to stop all immunosuppressants (the drugs Tacrolimus and CellCept) and weekly monitor the chimerism status in hopes of getting the donor cells to grow since we’re removing the “brakes” that are the immunosuppressants. Worst case scenario if my counts continue to drop and the donor cells don’t pick up is we’ll ask my donor for a hematopoietic stem cell donation and I’ll get a stem cell transfusion. The expectation is that the stem cells with help supplement the marrow transplant, differentiating into the appropriate sub-cell types and aiding in the repopulation of immune cells. The stem cell infusion is outpatient and fairly similar to getting a blood transfusion, e.g. being hooked up to a pump and receiving the goods, so non-invasive and painless.

I’m not worried at all. I have complete faith that my donor cells will pick up and I’ll start to rebuild a functioning immune system. Until then, I’m still holding tight and trying to recover as quickly as possible while maintaining my sanity.

On the upside, my RBCs and hemoglobin are steadily increasing! Which is fantastic. And I’m gaining more energy as the weeks pass. Which is wonderful.

Speaking of maintaining sanity, I apologize for not having updated in a while! The days just seem to pass by so quickly as of late. What I’ve been up to:

– I churned out another vocal arrangement for Resound of Mumford and Son’s Below My Feet. I’m really happy with how it turned out and I’m super excited to hear it come together.

– I’m working out a few donut recipes! Cake donuts, yeast donuts, different flavor combos, the works. This is part of a potential business venture a friend of mine and I are considering embarking upon. More details and pictures to come.

– Home errands. Now that I’m gaining more energy and mental faculties, I’m finally able to do all those little home projects I’ve always wanted to do. So far I’m rearranged my room, cleaned my closet (a major feat), and sorted through a bunch of things in my “junk” box…es. Spring cleaning never felt so good!

– Working through a brain puzzle book my friends Dan and Logan T. got for me. Gotta work on those brain muscles as much as my body ones! Verbal, visual, numerical, and logical puzzles galore. I love tickling my brain and having to think again.

– Binge watching Game of Thrones. I’ve gone through all four seasons in the past 7 days. It’s a problem, but I love it. #winteriscoming

As my brain and body are slowly coming back to a functioning state, I’m finding myself craving to do more and I’m pleased to say that I’ve been able to knock things off my weekly to-do list. If I don’t make a to-do list at the beginning of the week, simple tasks and errands I want to accomplish during the week and/or each day, I end up squandering my time on pointless, mindless Netflix binging. So to be a more productive member of society, as much as is within my limitations of a recovering BMT patient, I happily make and complete my to-do lists. It’s the little things really. 🙂