The last two weeks or so have mostly (with a couple notable exceptions) fallen into a somewhat predictable pattern: Mornings good, afternoons meh, evenings bad.
Most days Penny wakes up feeling pretty good and has a good breakfast. (Most commonly a bowl of rice with 2-3 fried eggs.) Since mornings are the best part of the day, that's when any activity for the day is most likely to happen. I'll mention some highlights below.
Lunch is usually not as big or as exciting as breakfast, and by supper Penny usually eats very little. Nausea to varying degrees usually kicks in sometime between 3pm and 6pm, and then she doesn't feel like doing much the rest of the day. Tube feeding has been more challenging. In the morning when she feels good, she's able to eat, and by afternoon neither tube feeds nor oral intake go very well. We've been prioritizing eating (which is more enjoyable anyway) and supplementing with some high calorie, high protein beverages (ensure, core plus, etc.). Her weight remains low, but has held fairly steady for the last two weeks.
We've tweaked the meds for nausea a bit and are now staggering 3 different meds, taking one of them every 2-3 hours pretty much around the clock. It isn't entirely clear what is causing the nausea. It doesn't seem to be triggered by particular food or activity. One possibility is that it is just part of the disease progression.
We've managed to take advantage of some of the good mornings:
Monday, April 29: We went to Calvin for a coffee time with colleagues from World Languages. Penny is officially retiring at the end of this academic year, but since Calvin's awards and retirement celebration dinner was in the evening, Penny wasn't able to attend. The lower-key (and morning) event was a nice chance to catch up with colleagues and find out what everyone has planned for the summer. (Lots of international travel in this group!)
Tuesday, April 30: Tulip Time in Holland. Tulip Time hadn't officially started, but Penny was interested in seeing the tulips and going to the Dutch bakery. The outing mostly went OK. There was a brief period where she wasn't feeling great, and by the time we left after a couple of hours, she just wanted to sleep on the drive home. The evening was worse than the usual bad evening.
Wednesday, May 1 was one of the exceptional days. Nausea kicked in by 9 or 10 am and she felt bad he entire day. A few friends came over to see her and do some cleaning mid-morning, but Penny wasn't feeling well enough to even have conversation.
Thursday, May 2: Back to the more typical rhythm. Earlier in the week, Penny had a craving for cotton candy, and found out that our church library has a cotton candy machine that turns hard candy (life savers, etc.) into cotton candy. Some friends from church came to visit and we gave the cotton candy machine a try.
Friday, May 3: Penny had a nice visit from a retired colleague who couldn't make the Monday gathering.
Saturday, May 4: While I was busy with Calvin graduation activities most of the day, a friend spent several hours with Penny. The highlight of the day was watching the live stream of the commencement ceremony at Minnesota State Mankato, where our daughter-in-law gave the graduate student commencement address.
Monday, May 6: Mondays are usually visiting nurse day. The nurse does some routine checks of vitals, makes sure the wound is healing appropriately, and changes out the port access that we use for home hydration. Everything checked out OK, but no explanation for the daily nausea rhythm.
Tuesday, May 7: The morning event was a visit from home palliative care. They are the ones who prescribe nausea and pain meds. We seem to be doing OK with pain management, so we spent most of the time talking about nausea management. Penny is already taking their three go-to meds for nausea, and it sounds like any other meds we might try would have likely cause sleepiness. For now we're going to stick with the current meds, but take them on a schedule rather than in response to feelings of queasiness in hopes that we can stay on top of the nausea a bit better.
Wednesday, May 8: Another visit from a friend, who also did a little grocery shopping for us at an Asian import store.
Thursday, May 9: Another exceptional day, and not in a good way. Nausea was a problem all through the night and Penny woke up feeling lousy. When we took morning vitals, her heart rate was 135. Shortly after we logged the vitals into the app we use for this, we received a phone call. Her pulse had dropped back down to about 110 by then, but they still decided to send a nurse to check on things. In addition to severe nausea, Penny was having problems with the GJ tube for the first time in several weeks as well. Fortunately, things improved quite a bit by mid-day, and Penny was mostly able to relax/sleep in the afternoon before the usual evening worsening kicked in.
Today: Back to the usual good morning. Penny woke up hungry -- she hadn't eaten much yesterday -- so she got up and made herself some soup. She's been puttering around the kitchen a bit and we washed her hair. Soon a friend is going to stop by, and if she's still feeling good after that, we might do our first outing since the trip to Holland -- a trip to Romence Gardens to get a few plants, something we usually do about this time every year.
And somewhere in there, Penny finished another knitting project.
Comments
Alisa Tigchelaar: So glad to hear that Penny was able to get out to Holland to see the tulips, and that there may be a plant outing again today given hopeful morning so far, Randy. Thank you for sharing. Continuing to pray for good nutrition, response to meds, GJ tube functioning and energy for the "puttering," knitting and other things that Penny enjoys. Much love. 💗
Jeffrey Schra: Thanks for sharing this glimpse into your recent days. Glad that today is off to a better start than yesterday—hope that continues!
Jim Ludema: How many church libraries do you know that have a cotton candy machine?? Sounds awesome! We continue to hold you guys in our prayers and send much love. ❤️❤️