By Monday she wasn't feeling well enough to attend the Army Band family party, probably because of being over-extended from the weekend before, and partly because week 2 is always more difficult. Earlier that day we met with a counselor, which also gave her a chance to deliver treats to the medical staff. I think those deliveries are among her favorite memories each year!
Tuesday was our meeting with Oncology to go over updates from the previous week's scans and tests. The doctor said the report came back suggesting increased activity in the problem locations, but he was hopeful that it was actually a sign of HEALING rather than GROWTH. They took blood samples immediately before the appointment, so the "cancer marker" results were expected to verify or disprove his hopeful diagnosis. I asked what target we're hoping to get to? Typical "healthy" CA numbers are below 100, which is where Rory's labs were being recorded while the Affinitor was effective. Would be great to be back down to that range again. Those numbers would be available around the end of the week, so a few days of nervous waiting ensued.
We utilized the borrowed wheelchair so we could keep our planned family visit to Temple Square. Going on a weeknight was definitely a good choice, as the crowds were not out of control. And, we got really good weather: cool (not freezing) and no precipitation. Lights were outstanding. Everyone (including Rory) got what they wanted at Chuck-A-Rama afterwards. A great family night!
Thursday we met with the Palliative Care team again, this time with another new doctor. I arrived late so I'm not 100% sure what his role is. For now we're continuing with the same regimen of medications. We do have more homework regarding getting all of our legal documents (wills, advance directives, a couple of new ones) in order soon. We also set up an appointment for the social worker / counselor to come back and meet with the entire family to continue discussions about what to expect and how best to prepare and cope with everything. I keep telling myself it's good that we are getting everything in place now, while we have the time and energy and capacity to deal with it. Another part of me wishes we weren't have to deal with it at all, of course.
Friday we got the call that Cancer Antigen (CA) numbers were back. Something seems to not be working with inserting graphics, so here's some of the history in table form. Remember we're hoping to be under 100 for each one:
CA 27.29
- Sep 2018: 139
- Dec 2018: 103
- Mar 2019: 131 (a bit elevated)
- Jun 2019: 302 (a bit alarming)
- Sep 2019: 613 (this prompted the change to Xeloda)
- Nov 2019: 306 (after being on Xeloda for a few weeks)
- Dec 2019: 305
CA 15-3
- Aug 2017: 83
- Sep 2017: 87
- Sep 2018: 130
- Dec 2018: 107
- Mar 2019: 126 (trending up)
- Jun 2019: 275 (worrying starts)
- Sep 2019: 683 (Affinitor is no longer working)
- Nov 2019: 315
- Dec 2019: 257
Obviously we're not back down to anywhere near 100. From the little I've read about, some patients do still have elevated markers as long as 90 days after a new medication is started, so it may not yet be time to panic. And that was the message from the oncologist office: no changes to the current plan. I will say that even when we were in the 300's a few months ago, he still wasn't ready to make any changes at that time, either. Rory will have more labs done at each 6-week appointment, so pretty much all we can do for now is watch for those numbers to be crunched downward. We'll see what decision is made if they continue to hover at current levels.
Saturday was the big Baxter Family Christmas Party, and Rory was able to attend. Traditional food (meaning food I remember growing up with such as homemade mac & cheese and dad's milkshakes), adult white elephant exchange, mini talent show and the annual live nativity made for a wonderful evening. Always good to catch up a little bit with uncles, cousins, and siblings!
Sunday I could tell that Rory REALLY wasn't feeling well, but she soldiered on to attend church. I think at least in part she felt like she NEEDED to go so she could continue handing out gifts and letters to friends and neighbors! That evening she participated in family dinner and our traditional evening Christmas book reading. We spent part of the afternoon re-arranging the furniture in our bedroom (for the first time in 26 years of marriage we "swapped" sides of the bed!), and wrapped presents to put under the tree.
Only a couple of doctor appointments this week. We're all looking forward to "week 3" meaning no chemo, and hopefully a rebound in Rory's energy and overall health! We do have a couple of family events that hopefully can be enjoyed by all. Until next week ...
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