Went another while without a post, so this is kind of a mishmash of an update:
Last week was really hard. First off, I missed the wedding of one of my big brothers in my #familynorelation. It was in Memphis, so many people I loved were there, and I was devastated. It looked beautiful and they looked so happy, and I facetimed in for speeches and cried watching the ceremony video. It reminded me that all of this treatment will lead to living life again at some point. I know people complain about weddings a lot—but when you’re not allowed to go, it’s heartbreaking. I’m not going to write more about it because it’s depressing, but for all of my able-bodied friends, enjoy that shit and don’t take it for granted.
My white blood cell count dropped right on schedule, around Thursday/Friday, and it sparked a rough reaction in my body. Starting Friday afternoon, I was breathless—it didn’t hurt to breathe beyond my usual chest pain, but I couldn’t get a full, good breath. Every time I almost fell asleep or did a little bit, I’d get out of breath and need to sit up, lean over, and catch my breath again. At one point, Nico and I were half asleep sitting up on the small couch in our dining room, because I can tip my head back and keep my airway further open there. I tried the doctor line around 2 am, but the doctor on call didn’t have any ideas beyond a lung infection—she didn’t think it had anything to do with my counts (which is what a doctor friend thought it was…and what good internet sources did too, so that wasn’t inspiring confidence in the doc) and said to see how I felt the next day, which is not a helpful 2 am response.
At 6 AM, sleepless and breathless, I finally called my doctor’s cell. She thought it was a response to the combination of low counts, inflammation, and acid, and told me to take Advil to test whether it’s being caused by inflammation. This is one of my favorite things—when she not only magically know what’s happening because she’s brilliant, but she finds a way to test it and make sure she’s identified it properly and it’s not an outlier response to something more serious. As always, she was right. Within the hour, I could breathe much better. Everything is still uncomfortable, but manageable. But on no sleep, I was deep in anxiety about my body, and basically spent the next two days anxious about my breathing and convinced I had a blood clot they hadn’t identified. Finally, another doctor friend suggested I get a little at-home pulse ox machine, which measures how much oxygen is getting into your blood and what your heart rate is—if those things are normal, your breathing and blood flow likely are as well. It was a game changer. When I would try for breath and not feel normal, I’d just look at my 98% oxygen level and tell my body to relax. It mostly worked. But having a tumor around your heart is just such crap placement and I’m ready for it to be out of there.
This weekend I actually started to feel like a cancer patient. Sudden, violent nausea (though not a ton, as long as I avoid triggers I seem ok!), even brushing my teeth left me out of breath, and I could barely eat without it causing inflammation and hurting my chest so I was super weak. It was sobering and hard after a couple of months of more functional treatment in the immunotherapy.
But my best friend since 3rd grade also visited! Daughter of a NICU nurse and asthmatic herself, she was the person you want around when you’re all worked up about breathing. Super calm, helpful suggestions, and ready to make Walgreens runs, do dishes, refill my water constantly (drinking a gallon of water in a day takes constant vigilance!) We watched the entire series of Downward Dog (watch it, it’s amazing and about an actual dog not at all about yoga), chatted, lounged, took walks as much as I could, and it was great. So grateful.
She also came with me to my infusion on Monday. I was really anxious going in after what happened last time. As I got ready to go, I tried to make myself look better to feel better. So I’m doing my hair goop routine, running it through my hair with my fingers..and I came away with tufts of hair for the first time. 20 MINUTES BEFORE WE LEFT. Really, universe? Really, hair? You couldn’t have just waited until we got through this stressful day? Nope. But we grabbed a hat in case it started to clump out and left. Cancer involves a lot of just keeping going even if you’re freaking out.
Meeting with Dr. K, as usual, calmed me down a lot. She did an exam and immediately pinpointed the part of my chest that’s most inflamed, and explained which nerves that spot would be lighting up. Knowing where the pain comes from makes a huge difference in anxiety, because it makes sense and comforts me that it’s not something scarier. And watching her get things on the first try is just comforting as hell-I feel like someone really understands what’s going on in my body, which is doing a whole lot right now. We’re also trying a couple of new medicines to combat the fun new symptoms, so we’ll see if that helps in the next week or so.
And then the infusion. Nothing terrible happened! I had a great nurse who was really experienced with my most toxic drug, which has to be hand-pushed through a syringe and is most likely to leak out of the vein. She was so calm, almost matter-of-fact about it that it helped me not worry about leakage either. Like last time, the final drug made me short of breath. I think it’s just that liquid has been pumping fast and hard into my heart through my inflamed chest for hours at that point, and my body is tired and angry. But she gave me a steroid to open my airway, more pepcid for the acid, and then my doctor’s physician’s assistant offered Ativan. Ativan is like baby Xanax, it’s a fairly gentle anti-anxiety benzodiazepine. If a doctor ever asks if you want this, say yes. My therapy education has made me more hesitant to think drugs are the answer..but it turns out sometimes drugs are the answer! Nico said he could literally see my face relax as it kicked in, and the combination of the drugs calming my chest down and the Ativan calming my brain down was such a relief. Since then, I emailed my doctor asking for Ativan for every infusion. No word, but it would be so nice!
So all in all, not our best week and it’s been harder to stay in good spirits. But hopefully future infusions are like this, and the new drugs help. Happy things to come this week, I’ll post more soon.