First off, thank you to all of you for being so patient with the time between these posts. 🙂 We had some wonderful time “off” and it was just what we needed!
TL; DR: Treatment occurred last week albeit shifted by a day. Still a little ice, but doable. Side effects a bit more extended but mainly more of “the same” with a lot more fatigue. There’s a new weird taste in my mouth but in general I am feeling much better now and am very grateful for that. Thank you for all you do for us!
My blood counts were low again before my treatment last week so there was a flurry of activity getting an injection and a blood test so my treatment. Unfortunately this meant that my treatment got delayed from Thursday to Friday again and that was a bit of a bummer. However, the fact that I got treatment is still a good thing and from a time shifting standpoint, given the differences in the treatment side effects it’s less of a big deal than it was with round 1 from a schedule standpoint. Treatment day is now Friday for the rest of the round.
There was some things about this round of treatment that were the same and some that were different. One difference is that it’s a lot longer at the infusion center and I was a lot tireder at the end of it all. (It’s ~3+ hours of just meds getting into your system.)
One bummer is that the ice isn’t quite gone. A friend who had this treatment advised me to do the cryotherapy in my mouth to prevent mouth sores and the nurses, of course, concurred. (Somehow I’d missed this in this round of chemo education…so thank you for that timely reminder my friend!) So, during one of the drugs, instead of ice on my hands and feet, I am continually holding ice in my mouth. Much less of a pain, but I’m not sorry it’s only for one of the drugs! Still very doable.
It was definitely a mixed bag response regarding side effects, but the good news is that they do seem to have the meds to counteract the side effects pretty dialed in. The nausea started sooner (a little bit on the day of treatment which continued for a several days) but the steroids and other meds definitely kept a lot of things a bay for quite some time. The steroids also meant that I felt better than I expected at first, but the crash when I stopped taking them was pretty cliff like. I am thankful though that there wasn’t that much nausea – I was able to manage it with some ginger ale, candied ginger, and a little bit of compazine along with the other medications.
The fatigue was what really surprised me, when I say cliff like, what I mean is I was a bump on a log for a few days, the fatigue and slow motion was very strange; 13+ hours in bed a day strange, much of it “out cold”. I felt like it took all of my energy to do basic things like shower, brush teeth, eat, etc. (Watching TV was a chore??!!) I had a doctor’s appointment yesterday and there was NO way I was driving which was a humbling experience.
What’s also weird is how much better I feel today (not that I’m complaining!). Today I’m feeling much better. I’m calling it my “sort of real-life simulation” day. With lots of breaks in-between I have done things like take out the trash, wash a sheet, send some personal emails (I’m sorry, I didn’t get to everyone…), sort some appointments and logistical things, and write this post. So far it’s good. I’m going to try and take it easy this afternoon with a nap and who knows what. I told someone this morning that I must have started feeling better/a little bored last night because at some point I Googled: “Things to do when you are tired from chemo” – which, sadly, was not abundantly helpful.
In general, I remain so grateful that while I am tired and I can’t do what I used to all the time, I can do what feels like a lot. One of the things I realized last week was that at no point in this whole process has the nausea been as bad as it was when I had vertigo a few years ago. That’s a huge win, because that was truly a horrendous event even if it was a much shorter timespan. (It is definitely on the list of “Do not want to repeat ever” items for my life even if I have zero control about how that goes, not that I’m keen on repeating this either.)
Now it’s about being patient with myself and continuing to practice that patience so that I know it’s ok to move a little slower, rest, and take it easy while I heal and recover.
The other weird side effect that I’m not loving is the taste changes. I have a constant sweet taste in my mouth and I don’t love it. The good news is when I eat food I can still taste the food as I expect it to taste so that’s a reprieve for which I’m grateful, but this is a bit of a bummer. I’ve also been eating a lot of grilled cheese for some reason. I’m going to try some zinc supplements to see if that helps based on the advice of the ND I’ve been seeing and concurrence of my oncologist. Another of today’s goals is also to see what happens with super citrus water to see if that can help me forget about it from time to time. Not a huge deal at all, but a bummer.
In random asks for ideas, it seems clear that my blood counts will likely continue to be an issue and I am still trying to increase my protein intake. I bought some pea protein powder but am now struggling with what to do with it. You might recall that I’m a strange eater when it comes too food and so, the usual method, shakes, etc doesn’t work for me. I don’t like milkshakes, smoothies, chocolate milk, or most things in that category so now I’m not sure what to do with this. (Yes, you read that right, I don’t like milkshakes…. :)) So, if you have any interesting ideas on how to hide pea powder in something…please share! (I naively thought applesauce and yogurt and well, the ratios needed for that are likely not happening. :))
I know I’ve said it a million times, but we can’t thank you all all enough for your continued support on this long road. The encouragement, check-ins, ideas, prayers, positive thoughts, meals/food, errands/grocery runs, fruit, rides, and all the things I’m forgetting because this post has gotten too long are so much appreciated. We are so grateful for all of you and your kindness and generosity makes this possible – thank you!
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Thank you for taking time to keep up with us and see how we’re doing as well as all the help! Because, I think like me, much of the world does nearly everything on their phones…I’m adding this note to the end of posts to make website navigation easier if you are on a phone. If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page). There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages. Please know that reading this page and thinking of us is help! Thank you for your support in all forms! If you have any issues, please email [email protected].
One down! Very glad you’re feeling better now! As far as the protein goes I’m not sure how much you’re looking at having to consume but I suppose you could get gelatin capsules and effectively make your own supplements? Or maybe you could try adding it to soup or broth rather than something thicker like a smoothie?
And during treatment, what about popsicles instead of just ice? Or are you avoiding sweet stuff? (I keep picturing that scene in Sex and the City… look at Miranda working Mr Grape!) lol
❤️❤️
Alex was on a mission to eat more protein. You can put the powder in flour based foods. Pancakes, waffles. Perhaps you could try protein pasta by mixing up some egg noodles? Muffins, maybe cake? Brownies? slightly more nutritious: oatmeal? Porridge?
Just try it in moderation.
We like the protein powder from Costco.
First – big HUG!
My first thought about the pea powder was soup? Literally, split pea soup or vegetable soup that has been pureed. Pureed with a little cooked potato, perhaps, or a chowder. Tomato can be a huge “disguiser” as well. (I could live on tomato soup and grilled cheese sandwiches.) We expect those kinds of soups to be “thick” so maybe it will be more palatable to you. Tomato can be a huge “disguiser” as well. And Angela’s idea of flour based foods is brilliant.
Eggs are out of the question. I don’t know why, but I won’t belabor the topic. Egg white is a great source of protein. You know, or may remember that when I am making waffles I separate the yolk from the white, beat the yolk into the batter, but whip the egg whites until stiff, then fold the beaten egg white into the batter to make a fluffier batter. Stir some pea protein powder (ppp) into the batter, too. Mix ppp into the butter you spread on your waffles, pancakes, sandwiches, etc. Don’t forget to chop up some pecans (toasred or not) too throw onto the batter you just poured onto the waffle iron.or on to the sourdough pancakes you just poured on the griddle. Hungry yet?
I have some empty gel capsules I can send you, but try your favourite pharmacy first, it’s quicker.