Driving home yesterday I tried to understand how a day that was not in fact that long, nor that complicated could still make me feel that tired.
But it turns out, a lesson I have been being beat over the head with since November 10th, is that physical exhaustion sometimes comes, plain and simply, from mental fatigue.
So many brain cycles yesterday. First off, the schedule was just full. Back to back appointments from 11am to 3pm that I was just sure would allow for, but did not in fact have any space for, a snack break. So we ate a hodge podge of coffee from the lobby and pirates booty from the vending machine.
Second, the minor detail that every person we met with was a new persons, and damn if I still don’t have the tendency to make a good impression with each and every nurse, p.a., radiologist, receptionist, fellow, attending, barista.
“Hi, I’m Betsy. If I am super nice and engaging to you this will hurt (me) less, surely!! Right?” I keep forgetting they don’t give better care to the Most Authentic. All that, and I just like to be nice to them. I mean, for as much as I hate wading through a day of pediatric cancer appointments, I always think about them, wading through a life of it. God bless them, and here is my exhaustive kindness.
So we met 154,000 new people and I became tired. It wasn’t all friendliness either because Josh also left tired and he isn’t nearly as friendly as me. Though I must admit he is far friendlier in relapse than diagnosis.
Sprinkled across the day we had some baseline tests run (an ECHO and EKG) for the trial in Philly (still an “if we get accepted” situation) and who would have thought that when I sat in the Cardiac Department waiting room and listened to the live harpist play “Somewhere Over the Rainbow” I would start to mentally file through all the fine-print, dotted lines I had signed on over the last two years and realize that though they call this pending ECHO a baseline, there were a lot of fine print possibilities of the chemotherapy causing heart damage. Sure as sunshine, I was suddenly waiting for the pending ECHO with the fear of “what will this reveal?” tightness rather than “oh, this is just a baseline….” levity. The harp music didn’t help. “And there was peaceful harp music played by a retired volunteer in the lobby, floating around kindly as the doctors hurled another curveball,” I went ahead and started writing the story.
That’s trauma for ya.
Anyway, we had lots of appointments, we met a gazillion (new) people, we signed a billion dotted lines, but we read zero fine print.
We’ve come a long way 🤣 January 2019 we would comb fine print for hours before signing anything, January 2021 we hand our signature out like movie stars.
The best decision I’ve made all week was asking two friends for help. First friend, I asked to bring us dinner on Tuesday and Thursday (both long hospital days). She is gifted (in a real holy way) with food delivery. In my next life, I’m hiring her as my personal chef. Gah, I love her. And even more, I love that cancer has taught me that you ask for what you need. Yes, yes, I need you to bring me dinner twice this week. And she obliges so kindly, brings us a meal fit for a king. Second friend, she asked to help and I directed her buy us a gift card at the hospital coffee shop. There’s something fulfilling about using a gift card to buy the “splurge” coffee shop items, that aren’t splurges at all because we all have to eat. But it feels like a splurge because it could have been mitigated by planning ahead and bringing food. But just like I am realizing that being nice to new doctors doesn’t help this all to go away, I am also realizing that being really prepared also doesn’t make it go away. As such, I walk in to a full day of appointments with nothing but a water bottle. So on my friends behalf I buy a vanillas late and a spicy sausage brego and exhale that I cannot change this by being prepared, and that’s ok.
I’m learning. To ask for help. To see that my hard work can’t fix this. To rest.
After all the consulting, we got the good word that Beau’s levels look “great and robust, ready for collection” and we are able to proceed with the t-cell collection on Thursday. We expected this and yet, I found myself immediately relieved. Is that possible? Yes, and it explains the mental exhaustion….
The last appointment was with the t-cell (apheresis) team and though the most interesting, was also about when we all hit rock bottom. Beau was antsy and Josh and I were glazed over with way too much info. We covered all the bases but as we left the hospital and saw the sun setting I remarked, “Gosh, I just wish that last appointment had been first because it was by far the most interesting and I am completely dumb founded how long he took to explain it.” Josh laughed, “Yes, that was painful…and he was my favorite, too.”
Beau did as well as one may imagine an 8 year-old would do during a 6-hour day of hospital consults and baseline testing. He was fine and bored and brave and over it. His final engagement with the doctor was to reply to the doctors “Thanks for coming in Beau!” with a really snarky, “Thanks for making me so bored.” I was mortified, still holding on to the belief that the best care comes from the best behavior. And just a casual desire for my kids not to be a ungrateful prick. I asked him to try again, he eeked out a forcible angry “thank you….” and then stared holes through me as his eyes shot enraged laser beams my direction. Perhaps I expect too much of him after a 6-hour day, and perhaps he needs to be a bit more thankful for the people dedicating their life to this Medicne. It’s likely both.
T-cell collection begins with a 7am check-in tomorrow. Wish us luck.