The most complicated question I get daily is -- “how are you”-- you know, the passing question that really doesn’t mean anything. But what would I say anyway? I have an incredibly complicated relationship with myself and my “okay” and “not okay” overlap constantly. The past few weeks I’ve felt like the worst version of myself- snappy, easily offended, hurt- not good qualities for a high school teacher and a marriage centered solely around a currently sick child. I’ve learned that if I don’t stop and think about how crummy I feel, I can just fake doing life. But the holidays are coming-- and I’m dealing with some deep rage and resentment about pretty much everything-- feelings that I know I have to get over fast to make it through the holly and jolly coming in like a tsunami.
Here is a Hattie update- for the most part, things are going well.
+ We are on round four of chemo-- we have spent the weekend at Scottish Rite for high-dose methotrexate. This “round” is the same one we did in October that was so hard on her body. She gets a dose of methotrexate (i.e. pumping poison in her body) for 24 hours and then gets it flushed out for 24 hours. She has to have a catheter in because it gives your skin a nasty rash and she is still in diapers.
+ On Friday as she got admitted, Hattie was sedated to get a lumbar puncture. This is when they shoot chemo up her spine to try and protect her brain. This was her third one in the past few weeks and maybe her 14th overall? I’m not sure where the number hits at this point. I just know that she turned 14 months yesterday and it has to be upwards of 12. So, almost as many lumbar punctures as months she has been alive.
+ We will *hopefully* go home tomorrow and then come back the Monday after Thanksgiving for her second 24 hour infusion of high-dose methotrexate. This is where everything went wrong last time. She had mucositis (painful mouth sores) down her entire GI tract, was on a morphine drip and IV nutrition for a week, and looked like she had been punched in the face. Her dose has been slightly reduced this time, but that doesn’t really make us feel better. We will spend most of December waiting for her to recover. And we are scared as hell.
After that, who knows. We will have more rounds of chemo. There is nothing straightforward about pediatric cancer. Things change constantly. Recently, her doctors took her off one chemo (vincristine) because it was attacking her vocal chords. And because leukemia can relapse if there is even ONE cancer cell in the body still, we soldier on. Even though she is technically in remission and current technology can’t tell if that ONE still exists. So it’s just a waiting game and lots of poison pumped in a baby’s body hoping that you are beating something seemingly invisible.
I said before that the emotion I feel most often is rage. I feel so mad about everything. Sometimes I wonder if I just now know too much about the cruelty and unfairness of life (in my small corner of hardship)- but I have no idea where the always happy, sunshine girl of my past is. I feel so foreign to myself, if that even makes sense. I feel rage about childhood cancer, about Hattie yes, but cancer in general. Too many sweet kids die daily. Too many spend their lives in hospitals and chemo clinics. But it’s not just that. I feel rage about politics. I feel rage about wars and death and immigration. I feel rage about systemic racism in schools and in society. And I mainly feel rage about how much freaking privilege is out there- to avoid all the things that hurt people. Pay attention. Listen to people. If you feel this innate sense of, “just avoid politics because it divides us”, then maybe your life is too easy. I don’t know, but it is frustrating to see people preach “kindness” but avoid learning about what kindness means outside of their own circle. Avoiding hard issues is a privilege. Just notice that. Please. And most of the time, circumstances are random. When I used to teach The Great Gatsby, we would always have a debate about hard work and the American Dream. And the lie is, that if you just work hard enough, you can do anything. The example I used to give to my students who really, truly believed in that notion was this-- if you work hard, I mean so hard, every day to get a football scholarship- will you get it? Maybe, yes. But what if you work hard, you are the best, you deserve that scholarship- and you get hit by a drunk driver the night before you are supposed to leave for college on that much earned scholarship. You’re in a wheelchair now. Your dreams are crushed. Maybe you end up with some sort of mental illness and need government assistance. Is that because you didn’t work hard enough? It would be cruel to say yes. The answer to society is not to have everyone “work harder”-- but to listen, to learn, and to get involved in situations outside of your own. Politics is not just a room where elected officials make random decisions and your life in the suburbs isn’t affected by it because you “worked harder” than others. It is education. It is healthcare. It is people’s rights and livelihood.
Cancer is random. It is really, really shitty and overwhelming. It takes “how are you” and makes it the most complicated question in the world. But it is just one type of bad in a world of hard things. So as this holiday season approaches and you’re feeling “stressed” about planning parties and gifts and family photos, recognize your privilege. It’s not a bad thing, but recognize it. And see if you can learn about just one situation in the world that you can try and make better.