Me before the first infusion!
Getting settled in back at home after about ten hours at the hospital. Right now I’m feeling a lot of things. Please excuse typos, am on an immunotherapy Benadryl/painkillers cocktail. Yum.
1. Sad I’m not with Nico. He almost never gets sick, but today woke up with some kind of stomach bug so he wasn’t with me at the hospital. Now he is sleeping at the little studio we are renting with our families for people to stay in when they visit. We said a quick, queasy “hey and how was your day” but then he had to leave and we are wiping the whole house down. Getting through this big milestone without him was strange. Maybe it’s a good reminder of how much I do want him at things. I’d gotten into a little bit of a habit of going to appointments alone because he’s missed so much work and school this month, and because it felt good to do things independently. But I wasn’t even alone today and I missed that cute, goofy weirdo, even though he is freaked out by blood, occasionally cries when I’m in pain, and asks questions of doctors when I’m trying to control everything like a little dictator. Maybe this was a nudge to be less of a little dictator? Nah, probs not.
2. Grateful for the tons of ways that people reached out today. I’m so sorry I haven’t replied to everyone but I’m going to try to throughout the week. I loved getting little encouragements throughout the day, especially when things took longer than we thought or I hit that last hour before I could take new pain meds! Also grateful that I have outpatient treatments because coming back home feels amazing. My mom is working on dinner right now like the little trooper of a woman that she is.
3. A manageable amount of pain from the port procedure—I now have my large biopsy scar on the left side of my neck and the two incisions from the port on my right (I look super hot) so there’s a lot of weird nerve pulling sensations plus the incision pains going on. My throat is really tight, which we worried was a sign of an allergic reaction to the Pembro, but we think it’s just a response to my body freaking out with all these drugs in them and the incisions. Still a little bit in watchful waiting mode. Let’s all hope for no anaphylactic shock tonight!
4. Even with all that, I feel much better than I thought I would after today. Doing something is better than waiting around, and now I know what an infusion will be like and, critically, where to get a burrito bowl in the hospital. I have yet to find the optimal combo of burrito bowl toppings, but today began my extensive field research on this topic.
5. Amazed by the science of all this. They took 6 or 7 vials of blood from my port, and watching it leave my body without feeling it was kind of gross, but also kind of awesome. I’m sure the oncologists who are pioneering the field of immunotherapy would be offended that THAT is my science takeaway today. But listen Oncology, we’ll talk when the horcrux in my chest shrinks. Until then, only phlebotomy gets my love.
Thank you again to everyone who reached out or is just following along. This shit is cray. And now to watch Apollo 13 with the mama because you know what would be worse than all this? Thinking I’m trapped in outer space in a broken spaceship.