If you know me, you knew this post was coming. I have tried to keep as brave a face as possible and have tried keeping my fears and frustrations stuffed way down so that they can’t haunt me, but there’s no hiding from this kind of pain. I am so sad and frustrated over what life feels like right now that I want to cry, scream, throw things and hide. I want to pack up my girl and run far, far away to where cancer can’t find us. I dream about leaving chemo and pills and side effects behind and just escaping somewhere that none of this exists. That place clearly does not exist and I am just PISSED OFF.
Anyone who knows me also knows I love Christmas. In my house, if it sits still, it’s likely going to be covered in twinkle lights & sugared fruit. This year? It was all I could do to muster a few stockings. I so looked forward to taking Kate out (on a well-timed, “off” treatment week) to go pick out our tree. Turns out she can’t have a live tree, so we settled for a fake one, which is fine, but even on an “off” treatment week, she was in a pretty rotten mood, so we just tossed up the lights & ornaments as fast as we could. Not exactly the kind of thing you take pictures of to commemorate. Our Christmas card this year features pictures of Kate from yet another REALLY awful “off” treatment day that were taken by a lovely woman who volunteers for an organization who takes free photos of families with kids fighting cancer. There are so many things wrong with that statement that I can’t even say. Of over 60 pictures, there were three that didn’t make me cry. Cry for how sick she looks, for how DIFFERENT she looks and for how miserable I know she was that day.
I thought these “off” treatment weeks were supposed to be the good ones?? Do you notice a trend? Because I do. All THREE weeks of these cycles suck. The whole time. There IS no “off.” We are always, always on. And if we’re not, we’re waiting and worrying about going back “on.” There is no rest. Only fear, anxiety and managing the in between.
I should have been outside today playing with her in the snow. Instead, I was squirting appetite stimulants down her throat via a syringe she’s afraid of that do absolutely nothing to actually stimulate her appetite. I was panicking the entire 3 1/2 hours she napped today wondering if she felt okay. Of course she doesn’t. She’s in the thick of this SHIT they call treatment and she’s not eating anything. So it takes three of us…mom, me and Mike…to bribe her to eat three bites of corn, a few bites of chicken and a couple of Mandarin orange segments and we celebrate? Yay, she’s just eaten the same amount as the blue jay out the window. Woo-freaking-hoo. When she finally gives up to go bed, she’s so miserable that I just want to put her to sleep so she won’t feel sad or blue anymore. I swear, that’s one of my biggest worries. She can’t express to me if she’s sad or depressed, but I sure as hell think she is. Do you know what that does to a parent???
We made her a cake on her half birthday last week. Not because I thought she’d eat it but because I’m trying as hard as I can to give her anything “normal” I possibly can. I want her to have memories that are not all about cancer. So…I decorated her cake, knowing it would all be for the photos and knowing she wouldn’t even taste it. My child…who used to want to eat cake for breakfast and ask for Hershey kisses by the dozen now won’t even touch it when it’s being offered.
She hasn’t played with a friend or seen another child (except at the clinic) in so long that her best friends now are two quickly deflating helium balloons shaped like SpongeBob & Patrick. She hugs the mini Christmas tree in her playroom and tells it she loves it. She has so much love to give and so many silly games in her mind to share and no one to share them with. She’s a prisoner in her own home and I swear, sometimes she naps for so long out of sheer boredom. I buy things to make art projects, offer to bake with her, play any game and read any book she wants. We go from room to room in the house, just trying to give her another four walls to be imprisoned by.
I spent two hours downloading photos from my phone and camera today that dated us back to this summer. Not one of them saved me from tears. Every picture taken prior to 8/15, I thought to myself “is she sick in this picture? How did she feel?” Every picture taken after 8/15, I remember the exact day…the exact outfit…the exact circumstances and mood from that day. I asked my mom if I would even need to label them on Shutterfly or if I would always know and remember like I do now.
Along with the constant worries and fears about the cancer itself and all of the treatment side effects (and trust me when I tell you that they weigh on me daily) I wonder about all of the other things no one mentions. Will she grow up to be happy from all of this? Once treatment IS over, how will we EVER adjust from this nightmare? Will she make friends? Will she struggle with it because of how little interaction she’s had? Will we ever, ever, ever be okay again?
I’m sure this is hard to read. It’s damn hard to write. But I kind of feel like I’m rotting inside and my heart is broken still. Some things are better and some things are easier. But my baby still has cancer and we have a really long road ahead of us. Where others find strength I do not know, but if you find out, I’m all ears.
I’ll cry tonight but I’ll wake with a smile tomorrow because Katie deserves me at my best. We have clinic tomorrow afternoon for a counts check & port access. We’ll head home (while accessed) and start cycle 3 on Tuesday morning following a spinal tap. Prayers are hard for me to say right now, so I’d sure appreciate yours. Thanks so much for listening.