I’ve been trying to think of how to describe how chemo makes me feel. Mostly, when people ask, I say something like, “I’m just tired and nauseous.” And while that’s true, it’s not complete. It’s just what I say when I’m too tired to think of any other words. A more complete description would start with, “Everything feels more, bigger.”
Mostly my senses. Sounds are louder. All sounds. Which makes them annoying, and sometimes almost painful. Everything is brighter, and I feel like I’m squinting a lot to keep out the blaring light. My skin feels weird, and when I tried to clap at Miko’s end-of-the-year program, it hurt. My taste is off, and is both more intense and less pleasant. Same with smells. With these two in particular, it’s not like I taste the good things and smell the sweet smells more intensely. It’s more like the smells and tastes are more pronounced, and mostly gross. I go around saying, “Why does everything smell SO bad?” and am met with puzzled looks. All of this is very overwhelming and makes me irritable. I feel like I’m getting a glimpse into the life of someone on the Autism spectrum with sensory issues. Everything is overwhelming, and it’s all too much. One night I had the fun experience of feeling as if my senses were all mixed up; I heard the dryer spinning and became so dizzy I couldn’t walk straight.
And then there’s my brain, which is on a definite slow-down. I do things like mix up the plot lines of Game of Thrones and Merlin, a show Miko watches. They aren’t super similar. Or stop midway through a sentence because I can’t remember what I was saying. The other day, it literally took me hours of thinking that I felt like eating something bready to come up with…. toast. The confusion of my slow brain combined with the confusion of my overactive senses shortens my fuse, and makes me irritated at all people around me. Lucky them.
That leads to the mothering. The hardest part about chemo is the mothering. Not because I have a difficult child. I don’t. I have an incredible kid who makes me meals, good ones, and keeps herself busy with art projects when I am too sick to interact. But that’s the thing, the being too sick to interact. She only has one summer as a ten-year-old, and I hate to think of her spending it this way. Being patient with a sick mom, being understanding when she has to miss out an an activity because the other kid has a cold and I can’t chance it, having no immune system. And yet she does, with grace. But I see her face, when I’m short with her because she dares to act like a ten-year-old when I’m feeling especially crappy, or when plans change because I’m not able to go through with the originals. I see her disappointment when I can only make the last part of her school program. Don’t get me wrong, she has a lot of fun, too, thanks to all of the sweet others who step in. And to even more others who are conspiring to make the rest of her summer pretty fantastic. So maybe it’s more of a selfish thing that makes mothering with chemo hard. Maybe it’s not the changing of her 10-year-old summer that I’m lamenting. Maybe it’s that I only have one summer as a mother of a ten-year-old, and I feel like I’m watching it from the sidelines, only able to sometimes engage. Or worse yet, and this is hard to admit, but sometimes I feel so sick that I can barely get myself to care that I’m not engaging. And that, with the sensory overload and dull brain, makes me angry.
nopinkribbonsplease 
Im not going to try to pretend that I can relate to the anger and hurt that you are experiencing right now. But I do know this….you love your daughter, and she loves you….period. As mother’s we get some things right, other things, not so much. But we love our kids and they love us, no matter what the circumstances, or who was right, or who was too tired, or…….. So dont lose focus on that truth, through sensory overload, dull brain, or whatever may be on your path. Accept that sometimes circumstances can really suck, but find peace in the love you have for her.
Wow, does this give me insight into our patients better than anything I have ever read!!! I shall be kinder and more gentle…thank you for writing this…you are an amazing writer! With that being said…I do not know another mother who has loved her child more than you. You have enjoyed her from the get go and she will remember that more than this summer. You are a wonderful mother…this will give her an understanding of people that most 10 year olds will never have. She will great compassion for those suffering and she will love you more than you will ever know. She sees how hard you are fighting this disease and that will reassure her. You are a great woman.
You have a very smart, very loving kid. Despite the disappointment she’s feeling, she knows that you are going through all of this so that you can spend MORE summers with her. Is it helpful at all to remind yourself that this is only your reality for right now? This probably all sounds to trite, especially coming from someone who has no idea what you’re going through, but I think there might be a sliver of truth. You’re a wonderful mom going through something awful. The awfulness is temporary but the things that make you such a great person aren’t.
This post is so insightful and eloquent. You may feel that your brain “is on a definite slow-down” but it certainly doesn’t show here. Your writing skills continue to impress me.
Thank you once again for helping all of us join you on this journey. I fully agree with the above comments, and want to remind you that ALL of life’s experiences continue to make you the amazing person you are. This is true for Miko as well, and this time in her life will help to define the strong woman she will become.
You’re being so brave Laurie, and you’re teaching your daughter that same courage. She’s getting an early dose of hard reality, true, and one we’d never wish for. (I”M SORRY!) BUT… in it, you are modeling her the way to live with courage and poise …and honesty. You wouldn’t be honest if you acted like things were better than they are. Well, we all shield our kids a little, but you are being honest and right now this fight is the fight of your life and you’re just being honest and strong for her. She is loving you more I’m sure each day and will respect you more and more as she grows up and understands more what this must have been like for you and how much you love her – enough to go to her show and clap, when you could have stayed home on the couch with the lights down.
I’m so sorry you must climb this hill, but you are teaching her so much and she is learning empathy that is making her an even more beautiful girl than I’m sure she already is. Kids are naturally self focused! You are enlarging her worldview to think of others, REALLY think of others and empathize, care give… and be patient and see that good things are worth fighting for. Nothing of value comes easily and she is seeing you fight this fight and face it head on. As much as you’re doing it for yourself, we all know as moms that we do everything with our kids at the center of our hearts. She’s learning what love really means. Love pays the price for what matters to it. Love holds on. Love believes. Love never gives up. And you guys are bonding even more through each day of this. As she grows up, this will be a part of who she is and what her story is as much as yours. She’ll see the world differently. She’ll hear about people going through hard things and she will be moved when others are not. She will learn greater respect for real heroes out there – she’ll recognize people actually overcoming trials and finding inner strength way before her peers do. She’s in the deep end of the pool now…but that’s ok. Because you are swimming in it together. And with deep pain and struggle comes deeper love and joy, because things matter more, days are appreciated more, people are even more precious, life is (I think 🙂 ) more beautiful and valuable when you’ve had to fight for it or support someone through something hard like this.
I know you’re a great mom – and as awful as this is… its allowing you to be an even more special one. You’ll feel sad you had to leave early, she’ll be glad you made the effort to come. You’re loving and mothering at even greater sacrifice than a mother normally makes!
We’re cheering you on and respect you so very much. I’m praying for you my friend. And your sweet family. Big hugs from an old friend. ♥
♥ ♥ ♥