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