Last week, I spent three whole long, terrifying, unreal days with L as treatment began. I posted last on that Thursday, I believe, and much has happened since. Here is a quick run-down.
After L’s initial results on Wednesday (indicating lymphoma, though not which type), I accompanied L to all her appointments on Thursday and Friday, during which we learned that her particular lymphoma is an aggressive T-cell lymphoblastic lymphoma. After L’s two Friday appointments (an echo of her heart and a bone marrow extraction), that afternoon we decided to go speak to a doc a friend’s father had referred L to at Sloan Kettering, just for a 2nd opinion. Our day had started at 9:30, and by the time we finally talked to this new doc, it was 4pm. We’d been going all day, and were both slumped in chairs next to each other when he came in and informed L that from her scans and test results, she should be admitted to the hospital THAT NIGHT, and that he’d already spoken to another doc at the Pediatric Cancer wing at SK about admission. It was a game changer if I’ve ever experienced one.
Walking into the Pediatric cancer unit, L started crying harder than she had yet. We were exhausted, hadn’t eaten, were confused about what exactly was going on, and surrounded by young children with bald heads attached to IVs. I can’t even imagine what it would have been like for her if I hadn’t been there. I can’t imagine what it would have felt like for her even though I WAS there. I have never been in the kind of situation where vital health depends on a matter of hours. Over the next few hours, they drew tons more blood, took more scans, and we spoke with a very wonderful doctor who said that he wanted to admit her right then and there– and no, it wasn’t an option to go home and get her stuff, because the mass in her chest was so concerning. Basically, L had to decide in a MOMENT whether she wanted to stick to the original plan at Beth Israel, or begin treatment immediately at SK. I knew how I felt, talked briefly with her about it, and we decided to stay at Sloan Kettering to begin treatment. By this point in our journey, I’d gotten fairly good at asking questions that may have embarrassed me, or that I thought I didn’t have the authority to ask. My final one of the night was: “How long can I stay?” They graciously allowed me to stay through the night with her, which was a MAJOR relief for both of us. I literally cannot begin to imagine leaving that night. They helped us get settled in her inpatient room (which was very nice), gave us PJs and toothbrushes and helped us order in Thai food from Spice.
Halfway through our meal, her doc came in again to tell her that he wanted to start chemo even SOONER– the next morning. That scared L too, more than much else prior, as she still hadn’t talked to or seen her parents, her girlfriend, or her other close friends, and it all became very real. Around this point was when it became hard for me. When it was just knowing what questions to ask, carrying her results, holding her hand– that I can do. But helping her through her anger and fear, her really powerful emotions, was tough, and I was getting worn out. They kept doing tests and catscans through till around midnight (which I was able to accompany her for), and unfortunately through the night they came in every two hours to check her vitals. We barely slept, and certainly reached new levels of friendship intimacy as she began to deal with the first physical trials of treatment (exhaustion, diarrhea, constant shots/IVs). They very kindly let us sleep together in her bed, and I KNOW that gave her great comfort.
I sent an explanatory and introductory to a long list of people she dictated to me– people who she thought would make her smile if they visited and people who she just wanted to be on the same page with all that was going on. I’ve been helping field her friends’ concerns and desires to visit (she’s really tired and overwhelmed), which is exhausting, but I don’t mind doing it. After that long weekend, I was honestly so exhausted it was unbelievable. It was hard to come back to life, and to my ED, and to my pure exhaustion– once the adrenaline wears off and real life kicks back in (which it is, with my show opening in less than a week), I found it hard to put the pieces back together.
Now, she’s home, and tomorrow I’ll go with her to chop off her hair (she’ll lose it anyway from chemo). I miss her, but it’s been hard to muster the energy to do much but take care of me for the last few days, and I know that’s fine. Plus Thanksgiving was a nice break, which I spent in CT with some friends and their family.
Also, by the way, this song is on repeat right now for L & I:
“I’m sad but I’m laughing /
I’m brave but I’m chickenshit /
I’m sick but I’m pretty, baby.”