Update #6: No Update. No Sunburns.
#ItsJoTime
My husband reminded me today that I haven’t posted an update for a few days. Well, I don’t have much of an update to post. Radiation continues, #8 in the books as of this morning. Chemo continues, #12 just pushed into her tummy this evening. She’s tolerating the treatment well, no big side effects to date. She’s still struggling to swallow and speak, but her breathing is stable and her oxygen levels are good. She’s eating more and more, and has developed quite the pair of Haugner-meets-steriods cheeks, along with a nice plump belly. She’s a few pounds up from where she was a few weeks ago, which is great. But I don’t have much more to report. She had another EKG to keep an eye on her heart and we’ll do another swallow study tomorrow. At this point, everything looks as expected and nothing much different from last week. The tantrums continue. Ugh.
There is no sugar coating it. We’re in the shit. Deep. We are in the trenches, getting shelled. We may survive and have great war stories. We may not. Jo has good hours and tough hours. She smiles and hands out cookies. Then she yells and screams. She wants to snuggle. She wants to banish me to the “quiet room” down the hall. It’s battle after battle. It’ll be a long war.
I drove home yesterday evening to pick up Randall and let Winnie out. I rolled down the windows, despite the 90 degree heat. I just had to feel air that wasn’t the hospital air. I wanted to be hot, not cold. I wanted to feel the ebb and flow of the wind and heat as the car sped and slowed, into shade, into sunlight. I found myself wishing for the sting of a sunburn, wishing that I could experience that pain instead of the one I have. The bite and throb of being outside too long. A pain you can quell with aloe and lotion, and just a couple of days.
I got home and played t-ball with Randall out in the back yard. I squatted down and ran my hands through our clover, looking for a four-leafer. I didn’t find one. If I had, I would have wished that Josephine could get a sunburn. She’s never had one. I have obsessively slathered her with SPF 700 once an hour anytime we’re outside, despite the fact that she has her father’s beautiful olive undertone skin. She’s spent weekends at the pool, afternoons at the park, she’s tanned, but never burned. Seems like a silly thing to wish for, since sunburns used to carry such shame for me. As a pale fair-skinned gal, I got them ALL THE TIME. It was awful. I couldn’t walk outside to get the mail without getting red shoulders. Every summer would be a cycle of my parents nagging, me eye-rolling, and then getting burned anyway.
I hope Josephine and I get to fight about things like if she’s wearing sunscreen on the middle school field trip to the waterpark. I hope she burns the hell out of her shoulders while fighting to land a 5 pound bass from her Papa’s boat. I hope she skips class in college and plays frisbee by the river, her pink cheeks giving her away to her professor the next day. I hope she burns the tops of her legs sitting in the nosebleed seats cheering her team on with her best friends. I hope she falls asleep listening to the waves of the ocean and wakes up with ridiculous tan lines she tries to fix for the rest of the summer. I hope she snorkels on her honeymoon and forgets to apply lotion to the backs of her thighs. I hope she has lots of sunburns.
I hope she has at least one.
If she has one sunburn, it means we get out of here. We play outside, we swing too long, we don’t reapply, we guzzle lemonade (without adding thickening powder first), we find a four-leaf clover, we free an earthworm, we forget about brain tumors. We forget about this war.
Then, all we’ll have to do is apply aloe and lotion and in a couple days, the pain will be gone. That type of pain sounds pretty good right now.
But until that time, we’ll keep fighting. Because right now, we’re in it. And #ItsJoTime.
It’s Jo Time 