Weekly Update #69

It has been a rough week since I last posted, with the overarching theme of pain.

Last Tuesday, the day after I wrote my last post, I woke up with my knee killing me. It got worse as the day went on and when I got up on Wednesday it could barely hold my body weight and I was worried about falling. I went into my doctor’s office to take a look at a bunch of possibilities and we didn’t see anything concerning with my knee, but did confirm that my blood work showed my immune system was down and I needed to delay my next round of chemo.

Since Tuesday it seems I wake up each day with a different part of me hurting, and I am like a zombie filled with pain meds and trying to tune out the pain by watching TV. The past couple nights I have barely slept because every position I lay in makes my ribs hurt so much the pain wakes me up. I’m on the max allowed dose of pain meds, I’ve tried ice and heat and stretches and rest and nothing is helping. It is pretty miserable.

I had more blood drawn today so we can see if my immune system has improved and I can start on my chemo this week. Fingers crossed that’s the case. For whatever reason, chemo often reduces my pain.

The one highlight of my week is that my daughter put together an incredible collection of Mother’s Day surprises for me. My favorite was the PowerPoint she created for me and presented on the big day, complete with a laser pointer. It was adorable that she wanted to badly to create a special day for me.

Time for me to get back to alternately trying for a small nap and watching TV. Hope this week goes up from here!

Weekly Update #68

I am still feeling really energetic, more than I have had for a while, it feels like. These oral chemo cycles have more variance than the infusions did – it’s tougher to predict how I will feel during and after treatment time.

I’ve been enjoying this energy in lots of ways. I have started daily morning walks with my running headphones so I can listen to podcasts. I’m also doing a daily exercise program called Momma Strong. It is 15 minute workouts and has so many modifications available for bodies with restrictions, which mine definitely has. It feels great to be back to exercising and in a way that feels sustainable. We’ll see if I can keep it up during chemo as optimistically as I am feeling right now.

Chemo starts up on Wednesday of this week. My daughter and I are trying to build our week around the idea that I will feel worse towards the end. So we’re playing the complicated board games like Mousetrap and Operation today and saving ones I can play from the couch for later on. And we’re going to try a system where I talk about how many things I think I can do with her in a day, and then she gets to pick how she wants to spend my energy together. I hope it will make it less sad for both of us when I can’t be present in the way that I like. We’ve been having so much fun together the past couple weeks, really playing and bonding and communicating so well, and I want to backslide as little as possible.

I got a call today from Wonders and Worries, a local charity we’ve been using the services of for years – they support children who have a parent with a serious illness, providing counseling, support groups, etc. They have a toy MRI machine, a doll with a port, and can make healthcare less mysterious and scary to kids. They have been so helpful with my daughter. At the knitting retreat I attended in March I got to select a charity to fundraise for that weekend, and Wonders and Worries received the money and wanted to thank me for selecting them. They said that the money is being used this week to help provide services to families, which makes me so happy. I’m so grateful for the generosity of the retreat attendees who made the donation possible, and that I was able to share about this incredible organization with that audience.

The highlight of my past week has been helping my daughter practice roller skating. We got an outgrown pair from a friend and she has been practicing daily. It brings me so much pride to watch her work hard at a skill she wants to improve, and I love that she feels safest when we hold hands while we go. She’s past the age where she would want to hold hands on a walk, so it is a real treat to get to do it daily.

I hope you’re all finding joy in your lives, despite our bizarre circumstances.