New Normal

I wouldn’t say sharing my experience comes easy. It’s hard for me to share something when I am in the thick of it. I want to be able to tell people that I am going to be okay or that I am feeling good, but many times that isn’t the truth. I am pretty successful at compartmentalizing, and in the weeks following my first infusion I was able to convince most people that I was doing quite well.

The truth is, it’s been hard physically and emotionally. In the grand scheme of things, I am doing well, but the new normal does feel pretty different than my old normal. The list of side effects for the immunotherapy drug I am on is long, and it overlaps a lot with the CDK4/6 inhibitor and the AI. The first week after my infusion my side effects were the most intense. I tolerate all the drugs pretty well, but I am not side-effect free. On a daily basis, I am dealing with fatigue, nausea, GI issues, joint pain, headaches, and hair thinning.

Fatigue has been the hardest of all of these things for me to deal with. I am still wrapping my head around doing less. It feels as if I am running at about 60-70% of my normal energy level. Each morning I wake up feeling foggy until about 10am. I am getting anywhere from 8-10hrs of sleep, and yet I still feel tired and just worn out. I used to wake up at 5:30am to workout before getting ready for work, but I haven’t been working out because I cannot get myself out of bed earlier than 6am anymore.

I love cooking for my family, but with my lack of energy, that has been difficult for me to do. Thankfully our fridge has been filled with delicious meals made for us by our friends. I am incredibly grateful for our community and their support. After a day at work, even with dinner taken care of, I am exhausted and have had to tell my kids I don’t have much energy to play. Andrew has also been generous with his work flexibility and has taken time to manage many of the household/familial tasks that I usually do.

Fatigue from treatment has also taken an emotional toll on me. Giving my energy to work and not having a lot of energy left at the end of the day for my kids is REALLY hard. I want to be more present for them, not less. Adding more work to Andrew’s to do list has also been hard for me. He already does so much for our family. It doesn’t feel like balance when I can’t do my part. Illogical? Likely, but I can’t help but feel like I am not doing my best. I want to be a good mama and a good wife. I want to be a good friend and a good librarian. I want to do it all, but that also won’t yield the best results either. At some point, my new normal will feel right again, but right now my scales feel out of balance.