Scarlett's chemo ended late last night, and so far, she's doing great! Now, just the long and arduous wait for her system to clear. I am so glad that this is the last dose of this chemo; the next cycles do not include methotrexate.
I have been experimenting with how to talk to other people about Scarlett. It is not an easy thing to explain why my baby's head is caved in, especially when they are completely unsuspecting. I know I have no obligation to other people, but I feel that it is better for Scarlett if we are up front and open about whatever is going on, rather than trying to hide it or lie just because it is easier. I never want her to feel like she has to hide or keep her head down when she goes out in public, and so I want to be an example to her.
When people see her, they react in a few ways. In the last few weeks,
- At the post office, the clerk at the desk saw her NG tube and asked, "So what does a kid do to get one of those?"
- At the grocery store, a lady asked nothing except "Will your baby be okay?"
- At Old Navy, a grandmother shopping for her granddaughter, who was the same size as Scarlett, asked what had happened, and then proceeded to cry in the store.
I have been playing with ways to respond to these inquiries. Will she be okay? I wonder that myself. How much do I share? The easiest is to just say, "She's had some challenges, but she is doing well." This skirts the issue and lets us move on. It doesn't seem to satisfy curiosities, though.
By far, the most difficult thing to say, and what seems to be the hardest for people to hear, is "She has brain cancer." Something about the c-word really upsets people. Tumor does not evoke the same response. Cancer has such a history, and is much more known. When I say brain cancer, I can see people's faces cringe, their minds go directly to their grandmother/cousin/coworker/friend who has had cancer. They do the "pity head tilt" (from Friends, anyone?) and offer to pray for us.
As soon as they react, I feel bad for ruining their day; nothing brings a gray cloud to the picnic like a baby with cancer. I try to be upbeat, ease their worries...and then I find myself actually comforting them, wanting to relieve them of the burden of my child's life. It's a huge task, and something I am just not really up to most of the time. The c-word is hard for me to say. It seems so final, so severe. I don't like to think about her that way, either. Just like the people we run into, I would like to imagine her just a little under the weather, not with cancer.
Chris and I have both felt this stress lately. It is too much responsibility to try to comfort other people when they ask about her. We just can't manage it right now. He does a better job than I do of being honest and letting people deal with it how they will. I am still working on how to comfortably face the world with her while not apologizing for how others feel about it. Maybe it will be easier when she is older and can show people how well she is doing. Until then, I am learning to be brave so that I can teach her.