So this is what is meant by “cumulative”…

I was grateful for the Monday off today. I think I may need to adjust my schedule for “weeks with all 3 drugs”…it was different this weekend. Looking back on it, not terribly different, but definitely different, I guess this is the start of truly understanding what they mean by “cumulative”.

Thursday, as expected, I got all 3 drugs. I was surprised when I was more tired Friday than I had been in the past. Not exhausted, but definitely more tired and there was a little nausea, it progressed throughout the day. Ginger tea and chews (thank you friends…you knew what you were doing with those!) kept it under control with the Zofran, but it was there.

Saturday & Sunday required a little compazaine. Still only 1 each day, and one of them was for a time when I wanted to be sleeping, but the nausea was definitely more present. The rest of Sunday was a combo of ginger and a “can I eat crackers every 2 hours” strategy – my normal strategy for motion sickness. It worked. Not bad in the end.

The fatigue was more present. I finally feel a lot better at the end of the day today, but this morning was a little tough. My goals for today were: 1. Make waffles with tofu to see if that would be a viable breakfast protein source, 2. Wash a load of towels, 3. Respond to some personal email a little, and 4. Walk up and down the street once.

I know it may seem weird to have goals when I’m healing…but I’m trying to keep them small and reasonable to keep me moving and doing things each day. The nurses said that they more you do, the more you can do. To date, this is absolutely representative of my experience – the trick – be reasonable and set the bar low. 🙂 (Saturday and Sunday’s goals were: eat; try not to spend all day in bed. :)).

Progress/status: 1. Waffles were mostly successful noting that I needed a nap after cooking 2 of them and eating so Mike finished cooking waffles and cleaned up (thank you Mike!) and Lily and I took a nap. (Also, sadly, I think the waffles don’t have any more protein than the TJs whole wheat ones that require 0 effort…this made me a little sad…). 2. Towels washed…but likely won’t get folded and may stay in the dryer for a couple of days..but maybe I’ll fold them tonight. 3. I did respond to a couple of my personal emails. 4. Will know after the sun goes down…should be feasible…we’ll call this on-track to completion. 🙂

I will call this success – feels pretty good actually. I will not be sad for this week to be a 1 drug week and now I think I understand a bit more about why the treatment is structured this way.

As I said, I’m feeling pretty good now that I’m at the end of “Day 5” (Day 1 is the day of treatment.). My scalp is still a mess, but I guess it shouldn’t be a surprise that my super sensitive skin is not at all happy about this regimen. (By a mess I mean, tender, rashy, itchy, and overall un-happy.). It’s doable though.

I still feel very fortunate to be doing so well. This isn’t fun by any stretch, but it’s doable, and we’re making progress! I noted last night to Mike that we only have 2 more of these weekends to go technically – which feels good. We can do this 2 more times for sure even if it gets worse. (I know that the 2nd 12 weeks of treatment is likely to be a bit rougher, but…still, we can do this…even if it requires more compazine…compazine isn’t that bad…it’s just not my favorite because I don’t like feeling like a zombie/vegetable.)

Tomorrow I have to be at the lab work place at 0700 to get my labs done. I couldn’t get an appointment so this will be an adventure in patience and waiting. (Me and every other person who needs stat labs first thing after a holiday weekend….my N95 and I are “ready”.)

As always, thank you to all of you for your support! (We particularly appreciated your sharing my joy on last Wednesday’s post! :))

We are continually so grateful to all of you for your support, prayers, check-ins, thoughts, ideas, entertainment suggestions, meals, and everything else….we are so grateful to have each and every one of you on our team! Thank you!

The now “standard” note at the end of posts for website navigation help:

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!