We made it! We made it through the rough part of treatment 1. Just as the chemo nurses advised, Days 3 & 4 were the worst with Day 3 being the worst and Day 4 feeling a bit better for me this time around. Hopefully this is a trend that continues, but only time will tell, and there is definitely a lot of data gathering. (Yes, there is an American Cancer Society table that I have been diligently filling out each day with how things are going and I’m looking forward to reviewing with the nurses on Thursday…hopefully they’ll find it insightful too…someday I’ll have to ask what they think of engineers as patients…I’m sure we’re full of pros and cons.)
One of the most notable things this weekend was that Mike and I went for a very slow and short walk up and down the street Saturday night. (Day 3, the worst day.) The air was so cool and it felt amazing to be outside in the fresh air and smell the plants – it was so therapeutic, and I’m so glad we did it because it is something to remember for future treatments. It was unreal how slow I moved, but I was so grateful I could do this small thing and it was just heavenly.
When people tell you about fatigue from chemo I don’t think I appreciated what they meant. It also likely means different things for different people. What I noticed the most was just how everything feels like slow motion. I feel like I’m slow motion all the time, it takes me longer to get ready, it takes me longer to eat, everything takes longer. (Even typing which is weird for me since I like to think I type fairly quickly.) I have to allow myself more time for everything. Everything is several notches slower than I’m used to which is mentally, quite a challenge. I have to be patient with myself and work to be ok with this. That being said, I am happy to be learning and gathering data and trying to think of ways to work with what is likely my new pace for a bit. It’s a different type of problem to solve than I’m used to, but nonetheless, it’s a problem to solve, and I do love solving problems.
The other interesting thing that I don’t think I quite appreciated was when they said I would be photosensitive. Being very prone to sunburns already I kind of just figured it was more of the same. Oh boy was I wrong. She was not kidding when she said that I needed to wear SPF30 and a hat when I went outside. Friday, since I was feeling well, I ran a number of errands. I spent a great portion the day in my car with maybe <10 minutes walking to and from places/buildings. When I got home, I had a sunburn on my face, my neck, the spot where my shirt didn’t cover, and my hands. My mind was blown. Throughout the day I also noticed that my sunglasses didn’t really block the sun as much as I felt they normally did. All handleable, but if you see me with a big hat walking around, that’s why! :). I will now be re-applying my sunscreen throughout the day if I’m coming close to the sun. And for now, I’m trying to do walks before the sun is up or after sunset. (And I’ll likely be wearing gloves more too!)
So far, I’ve been pretty lucky in the “taste” department. We’ll see if this continues. So far, the only thing I’ve really noticed is that one of my favorite things, garlic, seems to be tasteless. Which is sad, because I love garlic and usually double or triple the content requested by all recipes. (Anyone who has had my homemade garlic hummus can attest to this…) It was a very bizarre experience to take huge bite of garlic Saturday and taste…nothing. That being said, I’m hopeful it will come back and in the meantime I will just have to keep trying it and see if this phenomenon is real for me…more data to collect.
I am very grateful for how “well” I feel like it went this week with treatment. I feel very fortunate that I felt well enough to do normal things early this week. I can’t do full days of normal things, but the fact that I can do any of them at all feels like an incredible blessing. While this may sound crazy, it was lovely to leave home Monday and go to work. There is so much to be grateful for in this side effect experiences so far and I hope it will continue although I am afraid it may be naive to think it will.
That, admittedly, is the hard part that is the biggest mental challenge of the week. I/we made it through treatment 1. There are 23 more to go. What we experienced last week may not be what we experience this week. Somehow, mentally, I/we have to figure out how to really live 1 day, 1 week, 1 treatment at a time so that we can do this and not get overwhelmed or discouraged. I think that is what I learned the most about this week…this is much more a mental exercise than perhaps I expected and needs mental strength.
Thank you so much to all of you for your continued support via messages, comments, ideas, prayers, meals via our Meal Train, and all the other help you have been offering! (We got some great ideas on ice packs and head coverings/wigs last week..thank you!) We are so grateful to each and every one of you – your support is what enables us to keep going in this mental long game!
Continue to take things as you can. If you need more data, however, and some hard numbers to convince you to slow down when your body is telling you this, but your mind wants to go faster… Check out the Garmin Lily watch. You probably already have a watch. However, the “body battery” measurement gave me hard data to slow down when I finally caught the kids’ terrible cold. I wasn’t recharging during sleep because my body was fighting the cold. Then, another time, right after we got our COVID boosters, the “body battery” went down to 5 and just stayed there. I didn’t feel too bad about spending the next day in the hammock and on the couch. I knew it wasn’t my mind that was procrastinating (usually the case with me) but that I was physically drained and needed to focus on rest.
Engineers for patients are probably just really factual. I’m not an engineer by degree, but most people that work with me think I am. During my ACL replacement years ago I asked the surgeon, while he was drilling into my leg what size drill bit he was using and what the distance was between gradations were. He later told me he never had someone ask so many questions about the tools he was using.
We’re thinking about you every day.
❤️Bob & Maureen
May the 4th? 🙂 I believe the force is strong with you!
Keep walking, Spartacus! You are doing awesome!
Your writing is so good…it helps me to read and understand how you are feeling…
Love you lots!
So glad you got out for a walk. So therapeutic. Hang in there!
I sunburn my hands all the time, like today. I do have sun gloves that really help when I remember to wear them. If you search for sun gloves, you will find many options. I have fingerless ones from Buff. I like them.
Kathryn, you are doing amazing and are such an inspiration. I have a question — can you taste other members of the onion family (onions, chives, leeks, shallots, green onions, etc.) okay? Or is everything bland but you miss garlic more?