I had a joyous “home”-coming at the cancer center this morning. It started with me getting there by subway, under my own power. When I got to the station I realized what a steep grade the stairs are there. Getting to the top felt like rock climbing, in my attenuated, sedentary state. Still. It didn’t kill me.
Just inside the door, I waited for Quentin to be free so we could say hello properly. He had a lovely Thanksgiving, and so did I. He engaged me in conversation just long enough, it felt, to be reassured I wouldn’t be returning there in a wheelchair anytime soon. Maybe my haircut reassured him. Maybe my non-pallor.
I made my way up to 9. Phlebotomist B greeted me warmly, with only three vials of my red stuff needed this time. As became clear, I have been dumped from the research study I had previously been enrolled in, because I “flunked” the ipilimumab portion by having my gangbusters immune response to the drug. (Hey, at least I got the week of radiation that was also part of the study up front! Score!)
Phlebotomist B told me about his Thanksgiving – his favorite holiday, he said, because “it is only about food, family and friends.” He is from The Gambia, so in addition to turkey they had other typical dishes he told me about. I love hearing about immigrant Thanksgivings, since my family’s is, also. After he’d finished the blood draw he told me how sad he had been to see me so sick, and how happy he was to see me well again. I thought I might cry for a moment, but right then Nurse Practitioner R and Dr. P passed by the room and saw me and I did a little chair dance for them. They also looked relieved, and were so happy I’d gained some weight back. I said I’d need access to a confessional in order to disclose what I had eaten over Thanksgiving. They laughed, and said they were happy I’d been able to eat.
Nurse Practitioner R did an exam – it had been a while since I’d been poked and prodded – and declared my belly soft and my bowel noises regular. This was all good. I mentioned that I’ve been having intermittent headaches after eating, and it was unclear whether that was connected to the steroids or not. It didn’t seem like a big deal, at least at that moment.
I waited around for my blood work to come back, and made a plan to meet J for lunch (now that I can eat again, this is my great reward, because he works very close to the cancer center).
The bloods were fine. Nurse Practitioner R called in a doll-sized portion of steroids to the pharmacy – I’m going from 20mg tablets over Thanksgiving to half of those the past couple days to 5mg for the next two days, then 2.5mg for two days, and then GOODBYE CRAZY PILLS, HALLELUJAH! Nurse Practitioner R told me of her upcoming trip to a conference in Rome (her first) and I racked my brain trying to think of some quick useful tips. I told her to avoid restaurants with laminated menus written in English, and to try to find restaurants with a verbal menu. (That alone should get her pretty far.)
Finally, the big news: I’ll be having a scan on January 5. A CT scan, as they have done before. But this time, because of my headaches, I will need to follow that with an MRI of my brain. (Damnit, I knew those headaches might be trouble. I guess I’m still glad I mentioned them?)
I went back to see the admin person to schedule the scans and saw a teetering stack of boxes and boxes of fancy chocolates and cookies on her desk. I had been thinking of a way to thank my team, and I think I realized seeing those that I’ll need to send something a bit different to make any impact. J suggested fruit. That sounds like a plan.
I went to meet J at a pocket-sized French chicken restaurant we’d been to before. The last time I’d had a chicken caesar salad that was delicious. I was going to order one today, but decided to hold off. I haven’t had any fresh leafy veggies yet, and Nurse Practitioner R asked me to please continue to refrain until I’m off the steroids. Given that there is now an end in sight to those, I decided to hold off. I’ll cook the bunch of kale I bought so optimistically yesterday (hoping to make my favorite raw kale salad). Even cooked kale may be a bit of a risk. I can’t believe how much I’ve missed greens. Once they are again permissible I will probably binge on them for a week.
So I drowned my sorrows with some really exquisite mushroom macaroni and cheese, and a piece of roasted chicken. The place is so tiny, there is only one small communal table by the door. When we sat down, a man was sitting across from us eating a chicken caesar salad. I coveted it. I tucked in to my meal, which was a reasonable consolation prize, and chatted with J. I told him about my visit, the outcome, and how exhausted I felt. I’m not sure whether the guy across from us had been listening the whole time, but he decided to chime in right then.
“Excuse me, I overheard you are tired. Are you working two jobs?”
“Uh, no. I am getting treated for cancer.”
Apparently this man had two conversational triggers – one having to do with working two jobs, which probably explains his choice of opener, and the other having to do with his wife, who battled breast cancer for ten years. We were trapped and there was going to be no escaping.
“You know, you need to have a lot of faith. Faith in God. That is what will get you through.”
I really didn’t like where this was going. And I wasn’t even half done with my lunch. So I needed to head him off at the pass.
“I don’t think that is the case for me, sorry. I do have a lot of people who are praying for me. And I appreciate it. But I am putting my faith in science.”
He wasn’t really sure how to keep going in that vein, so he shifted to his wife’s story. It sounded nothing short of agonizing. Ten years of surgeries, chemo, even some kind of surgery on her neck to keep her head attached to her spine.
I felt for her, for him. But this isn’t my trajectory, not by a long shot. I thought perhaps of asking about his accent (it was pretty clearly Persian), how he’d come to this country and when – the usual questions I, as an immigrant, ask other immigrants. But I also felt strongly that I didn’t want to encourage him. I felt annoyed at his intrusion.
By the end of our meal we’d heard about his two jobs, the way he’d had to support his family and be both mother and father. This was a man in great pain. He wished me well. I wished him comfort in his grief. I wish I could have felt better about it, but it wasn’t what I needed at that moment.
I guess my take-home lesson from today is, no, you don’t have to tell everyone you have cancer – particularly if you aren’t prepared to listen to their narrative in an empathetic way. The world is sadly filled with people who have their own cancer narratives, and you draw them out at your own risk.