Mountain Jam 2016
Jim took Ana and her cousin Chloe to Mountain Jam yesterday for the second year in a row. They had VIP tickets for Saturday which were gifted to me by my contact at Town Square Media (the organization that runs Mountain Jam). The girls had fun, though it was definitely a very long day for them. Jim snapped this picture in the evening, right around the time Beck performed. I love Ana’s expression here – total contentment.
There isn’t a lot of news to share right now, but my concern (and dread) about Ana’s cancer progression is growing. Ana’s last labs showed mild anemia – some of her counts were down, but not too far below normal. This isn’t too bad considering what kids on more aggressive chemotherapy have to deal with, but for Ana it’s a new development and I have noticed she’s been more tired lately and takes a nap almost every day, particularly the days when she goes to school.
Ana also had a scary thing happen last week when she fainted at school. She was alone in the bathroom at the time (she managed to slip out of class, not tell anyone, and make it to the bathroom where she locked herself in). When she was able to function again – luckily not too much time had passed – she called me up and was nearly hysterical. She was just terrified. I picked her up and took her to her pediatrician who checked out a few things and determined the fainting was from mild dehydration which caused her blood pressure to drop (when she stood up to go to the bathroom, it dropped even further). Dr. Yamashiro agreed this was likely from dehydration (we kept him in the loop via email, as usual).
Ana was extremely embarrassed that this happened which is why I didn’t post about it sooner. The embarrassment she’s feeling is something I find very heartbreaking. I can understand it – as can many people reading this. Have you ever been ill, totally vulnerable and worried about not only burdening people, but being seen in this vulnerable position? That’s what Ana’s grappling with, except she’s just 15 and at the height of the “don’t look at me” phase of life. I’m posting this story because it’s part of the new normal for Ana, and for those of us closest to her.
When I got that call from her on Thursday, half a dozen horrible thoughts went through my head. Is this the beginning of a downward spiral? Did she lose consciousness because of a tumor? Internal bleeding? Lack of oxygen in her lungs? I tried to keep it together, but that night I had a major breakdown in front of Ana and Emily – starting with a dumb fight about nothing important. I lost my shit. There’s no other way to put it. Ana and I both lost it and poor Emily will likely need years of therapy since this played out in front of her.
Anyway, I started taking Xanax again. It helped me a lot when Ana was originally diagnosed and throughout that incredibly stressful time when we were waiting for a new liver (in 2012). I know things are going to get harder – much, much harder. The fear of what’s to come is paralyzing me. I don’t know how to move past it some days – how can anything matter right now? There is no meaning in anything for me. It’s like being slowly crushed – the weight of it all is excruciating.
Yesterday Ana told me she’s begun to feel pain in her pelvis again. The tumors in there – holy crap – how big are they? What are they interfering with? Skipping the CT scan last Friday was good for Ana, but my mind is conjuring up a whole host of nightmarish scenarios that may be much worse than the reality. I’ve been emailing Jillian, Ana’s social worker at the hospital, so that Jim and I can finally meet with the Palliative Care team. Hopefully this will happen the week of 6/20 – the main topic of discussion will be how we can not only control Ana’s pain, but ease the burden of her fear (and ours) even just a little bit.