As often happens, I missed updating in the middle of my chemo cycle. This one wasn’t too bad, no nausea and the fatigue didn’t hit hard until relatively late. Unfortunately it was still a pretty unpleasant two weeks.
The pain I wrote about last time only got to not-needing-constant-pain-meds level within the last day or two. I don’t know why it got so very bad or was so hard to recover from, so no lessons learned to take forward. I have been doing exercise that focuses a lot on alignment and using muscles for what they’re supposed to be used for, I am hoping that long-term that will prove to be useful in pain management. One of the hardest parts of the pain is that it is ramped up by my knitting. I really really miss it. Knitting makes me feel relaxed and creative and allows me to make clothing I love and not having that outlet right now is sad.
I upset my stomach on Thursday night and spent the entire long weekend trying to recover – mostly by laying limply and staring at screens. I’ve watched so much TV this month and have been grateful for the escape.
One of the things that has been interesting about the pandemic is seeing the world go through some experiences I have had as a result of cancer. The current feeling seems to be that we’re all done with this and yet it’s not over yet. I have hit that wall plenty of times in treatment, of just wanting to step off the ride for a minute and have some normal time. But you can’t, it’s not an option, and you have to find a way to bear it. My family of introverts spent a lot of time this weekend in separate rooms; I think we all needed to meet only our own needs and not deal with another human for a little while.
This week is a couple telehealth visits and recuperating from chemo. Next week I have my PET scan (ugh) on Monday and get my results on Thursday. Last time we talked there was a chance I would move to a trial at MD Anderson after this scan. I’m curious to hear what my doctors think of that risk right now, and what the plan will be. I wonder whether the trial runners would be open to giving me a slot here so I didn’t have to expose myself to travel to participate. We’ll see what I hear next week. Hope you’re well, readers.
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!
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.