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.
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!
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.