Really Listen

Plans for a low-key, "easy" week sure didn't last long.

This week was Rory's OFF week for chemo, which we hoped would mean an increase in energy and overall feeling well, especially after how difficult the end of last week was. Alas, it's been a week of fatigue and "blah." So, maybe she's reverted back to the off-schedule cycle and she'll feel great next week? Can hope so.

The week wasn't all bad. At her Monday check-up with her primary care physician, Rory got cleared to drive and also go back to her aquatics class. As you may recall, she needed to have several months clear of her last seizure before she could drive again, and needed some additional time since dealing with the blood clots before even thinking about ramping up her activity level. "Green light" for both of those! I know Rory has really been looking forward to getting back to aquatics, mostly for the social interaction with her sweet classmates and instructors. The way the week went she didn't make it to class, but maybe next week? Can hope so.

Tuesday I took Rory to her follow-up with the radiology oncologist who did her recent series of radiation therapy. He had looked over her recent scans, and after some discussion about symptoms and current pain levels they decided not to proceed with any additional treatment at this time. That's when I started asking questions. Rory reported that recently she had forgotten to change out her Fentanyl patch, meaning she wasn't getting as much medication for a couple of days. Almost immediately she could feel that shooting pain again in her hip. That report, coupled with those tumor markers still above 300, suggest to me that there's still active cancer growth but the pain is being masked by all the pain medications she's on. He agreed, and said that if Rory's body reacted in the "normal" way, he would probably recommend additional treatment. BUT, knowing that her body doesn't tolerate radiation well at all, as it takes her WEEKS longer to recover than expected, and because she's currently managing the pain in other ways, he isn't going to press for the treatment. Rory agreed with that approach; we'll wait for "breakthrough pain" that can't be reasonably managed with pain meds, then we might reconsider. Scan results + tumor marker + symptoms are the three things he is looking for, and since at least one is currently under control and she's in a relatively good place otherwise, we'll proceed without treatment plan changes.

She expressed her deep gratitude: "Everyone on the team really listens to me. And more than listening, they HEAR me." In the moment I wanted a team that would tell her to be more aggressive, really continue to fight and attack the disease. But I'm realizing that isn't what she needs going forward. We've "turned the corner" and are primarily concentrating on treating symptoms rather than disease, prioritizing "quality of life" over "quantity of life." We both knew this time would come, but I guess I wasn't ready for it to actually happen. It's time for me to step back, and really HEAR her better, even knowing what that means longish-term. I guess it doesn't matter whether I'm ready for it myself.

Wednesday I took Colton to a driver screening at TOSH. They ran a series of tests and checked physical and neurological benchmarks, in the end telling him there's no reason he shouldn't go ahead and prepare for getting a driver's license. Now he just needs to decide to study enough to pass the initial DMV test, and we'll get going on those 100 hours of observed driving. We also got him enrolled in Driver's Ed through school for next semester. I guess this is only related to our ongoing family medical in that we weren't sure when Colton would be ready, so it was nice to have an independent office give their official blessing.

Thursday morning Rory and Colton got into an accident on the way home from another of his medical appointments. Fortunately, nobody was hurt. MIRACULOUSLY, there was nobody on either side of the intersection or in oncoming traffic lanes on that VERY busy stretch of 9000 South. Haven't heard from the insurance adjustor yet, but they are paying for a rental car (got upgraded to an Infiniti Q50!) so I'm not personally in a hurry. :+)

I think that was about it on the medical front for this week. Again, even though Rory starts her chemo again we're hoping she feels "good" this week for the holiday. Hope everyone makes this Christmas extra special; I know that we are!