I wish I could get a Starbucks grande nonfat mocha delivered to my door. I know it’s a decadent addiction and that I shouldn’t waste my money or put that poison in my body, but right now it’s my drug of choice. Plus, the holiday cups are here and they just make me feel so happy, I can’t explain why. Maybe it’s the contrast of the whipped cream against that old timey reddish brown background. It looks like a present, doesn’t it? With a delicious ribbon of chocolate syrup to tie it all together.
This year I’m mainlining coffee like I never have before and I think it’s starting to get to me. There’s all this pressure building up in my head and I feel like I’m starting to explode on everyone around me (namely, Jim and the girls). There’s only so much denial my brain can take. When I’m wrapping presents for the girls, I’m always wondering where I will be giving them these presents. Will it be Christmas morning at the hospital? Will Ana be in the ICU on Christmas day? Will she be having surgery? Who is going to have to die this holiday season so my child can live? I keep trying to suppress these thoughts, but they are seeping through the cracks of my happy holiday cheer like nuclear waste, poisoning everything that I find comforting and joyful about this season.
This is kind of what I’m feeling right now:
I haven’t packed the hospital bags yet. I need to do that today. I keep putting it off without any real reason why except that I don’t want to pack all my favorite sweatpants since I wear them all the time. Well, there’s also denial, but I guess it’s hard to cling to that when every time the phone rings Ana says, “Do you think that’s the liver?”
And speaking of Ana – here’s the update on her. She’s in school for a mostly normal week, except we kept her home yesterday for a bit of a mental health day (Emily too). I think it was more for my mental health than theirs. I couldn’t face another morning of making lunches, brushing hair, finding shoes and trying to get them to the school on time. Also Ana had some kind of awful reaction to one of her medications on Monday night that caused a bad rash. The rash has been there for a few days. I didn’t realize how extensive it was until I ordered her to take a bath and gave her a fizzy bath bomb from Lush which contained chamomile, lavendar and sandlewood. Apparently one or all of these substances burn if you have a rash. About 5 minutes into the bath she started screaming. She was in excruciating pain for over an hour during which time the rash was angry, red and warm to the touch – and it covered her entire stomach and abdomen all the way up to her armpits. I gave her Benadryl and emailed Dr. Hochberg who said to discontinue all her medication except for iron and one other thing since she doesn’t really need them at this point. However, Dr. Martinez (the pediatric hepatologist at Columbia) does feel that Ana needs Celebrex, so we’ll give her a few days to see if the rash gets better and start her on Celebrex again on Friday.
Ana’s hour of hysterical sobbing and screaming unwound what was left of my sanity. Maybe I can get it back with a nice cup of mocha.
There is no plan right now. There’s just waiting. We’re waiting to hear back from Dr. Kato about the possibility of ex vivo resection versus transplant (I just sent another email to the team coordinator about that). I’m waiting to get the living donor screening process started. And of course we’re waiting for THE CALL. Meanwhile, I guess we’re supposed to keep living life as if we aren’t driving full-speed off of a cliff.
UPDATE: Right after I posted this, I crawled into bed so I could feel sorry for myself and checked my email on my phone (which is always connected to my body these days). Dr. Kato had emailed me back about the MRI – he said that the right side of Ana’s liver is clear, but the tumor is so deeply involved with her portal vein that there is no way to save it. So no ex vivo for Ana. She definitely needs a transplant.