“In two years and one week we won’t have a million little spoons to wash,” David said to me this weekend. We use two to three spoons each day to give Jack his medication. We’re both looking forward to going through less spoons.
“I can’t lay down like normal because my back hurts. I have cancer and had a procedure today.”
I took Jack to the dentist yesterday, which was also a procedure day. I try to clump his appointments together so that I don’t miss as much work AND so that we can get the crappy stuff over with all at once. Unfortunately I failed to think this through entirely when booking the dentist appointment. Jack’s lower back was sore from the lumbar puncture he had in the morning, so laying down in a dentist’s chair was uncomfortable. I folded up my sweater as cushioning for his lower back.
We made special requests. We do this here and there to ease some of the things Jack goes through. Do you have toothpaste other than mint? Can you put a movie on other than Tangled (it stresses him out)?
Jack yowled the whole time he was getting his teeth cleaned. He went on and on about how awful the toothpaste (first ‘chocolate,’ then watermelon) tasted. I felt sorry for the other patients. I hoped Jack’s yowling didn’t scare them. I held Jack’s hand and asked him to try to be quieter. But when you’re a kid who chews chemo every day, your tolerance for other bad tasting things is lowered. What can you do?
“I think Bri doesn’t play with me anymore because she thinks my Broviac is gross,” Jack told me recently. I asked if the other kids at school knew about his Broviac and he said yes – he had showed them. Some kids are still mistakenly under the impression the tube comes out of his stomach and find that frightening.
Cancer is on my mind all the time. I wish it wasn’t that way but it pops up where I least expect it. We went for a playdate this weekend and I had planned to avoid the topic. But it’s pretty hard NOT to talk about something that permeates every part of your life. Still, I don’t want to be the person who brings down every conversation. Thankfully, I discovered that our hosts were familiar with the disease. The mom broached the topic and I followed suit.
She nodded sagely when I confessed that I feel like I can no longer chime in on a Facebook status when someone’s child is ill, particularly if the symptoms resemble those that Jack had when he was diagnosed. It’s as if I am the bringer of doom and gloom. I allow that little whisper of “it could be serious” to get through. I give credence to a parent’s worry for their child. People stop talking once I have weighed in.
It’s similar to what happened when I was getting a divorce. Suddenly I could see the worry in the eyes of the couples around me – ‘If they couldn’t make it work, what does that mean for us?’
If her child can get a life-threatening disease, can mine?
Everyone knows the answer. It’s harder to ignore the possibility when the evidence of it happening right out of the blue, with no warning at all, is standing right next to you.
Today I mailed out the request for a 504 assessment to Jack’s school district office. It feels strange. Jack is pretty gifted in many areas. He’s also fierce and determined; he’s caught up well with his peers after missing over six months of school. He can do the homework and he is getting 100% on math tests now.
But here I am asking for him to be considered disabled. It feels wrong.
This is the reason I’ve delayed broaching the topic with the school before now. My son, even with Leukemia, has so much compared to so many others. How can I ask for more? His performance would be normal for so many other kids. Most people can’t tell he has problems at all. Isn’t that good enough?
But it’s not about how much we have or how much others don’t. Jack is doing better than expected, but he is struggling a lot in order to do so. Yes, he’s completing his 12-14 pages of homework each week, but it takes him so much longer than it should and it wears on him. He is tired and moody and often feels like he isn’t living (although he uses different words to say so). It’s hard to learn and retain information when you are using up all your energy just to get through the work.
Hell, if I’m exhausted every day, how must he feel? His worries and his challenges are a bit different, but they are so much bigger than he is. He has too much to worry about for such a small guy.
For the last year I’ve been thinking we’ll get used to all this and life will go back to the way it was. I thought we’d eventually make ourselves believe that everything will be just as it would have been otherwise…that all the worry would ebb away. I’ve been waiting for the time when I could worry less about what is going on in Jack’s body and return to thinking about more frivolous things – or even important things like my relationships with friends and family.
But I’m starting to get it. We aren’t going to go back. We jumped the track and now find ourselves somewhere completely different. We have to move forward. I can’t care about many of the things I used to care about – I don’t have the capacity and I’m in a completely different place.
So, to my friends and family and even people I’ve yet to meet: I’m sorry. I know cancer is unpleasant and it might seem like I’m “all cancer all the time” now. I just can’t help it and I hope you’ll forgive me for that. I am still finding my way.
Cancer creeps into everything.