Sometimes, it is hard to see this journey as an adventure. I went into chemo yesterday, and I asked the nurse to check my CEA (my tumor marker). I saw her to go the computer near the area where I was sitting, type some things in, and walk away.
My instincts felt that wasn’t good, but I tried to push away those feelings with logic. “Maybe that isn’t a computer she can use to check the numbers.” Which I know isn’t true.
She returned to hook up another bag of chemo to my line.
“Did you find my CEA?” I asked her.
“Oh, I need to print it out. I couldn’t print it from the computer I used,” she said, keeping strangely busy with her work.
“It doesn’t show on the screen?” I asked her. “I don’t need a printout. Just the number. Did you see the number?”
“I don’t remember it.”
“Can you check again now?”
“It is up a little.”
“A little. How much is a little?”
“It is 160.”
“That’s more than a little. That is more than double my last number.”
“I know. I’m sorry.”
“If the chemo isn’t working, maybe I can just skip today.”
“You can’t. You need this treatment, then get your CT scan next week. You never know. It might be stable.”
“A CEA that doubles does not indicate stable.”
We were quiet from there. This is hard.
Two different religious people came to visit me that session, the first time in the year that I’ve been at Dana Farber. They were a nice distraction and listened to me so well that I actually felt entertaining. One of them even asked if he could use my words in his sermon on Sunday. Then I slept.
It is a day later and I still want to escape this whole thing. I spent the day reading and futzing around on the computer. The kids came home from school, and they played around me.
Then, the younger one asked me to help him build a garage out of blocks. I had been in my all-day habit of doing nothing and it was hard to step out of that, so I told him that I would watch him. He moved closer to me and sat on the floor, quietly building and periodically saying, “Look, Mama! Watch this!”
While he was building and I was escaping into my own world, it occurred to me that, now more than ever, rather than escape, which I dearly, dearly want to do, I need to do the complete opposite. I need to engage even more.
Man, I never thought it would be this difficult to just live life. Thank you for being there, for helping to carry me, especially when times are hard.