This week was pretty rough on Rory. After last week being OFF from chemo but still really difficult, we had high hopes that this week would be better. Not so, unfortunately.
Tuesday was her Faslodex injection, and she actually drove herself. I was a bit surprised to hear that they didn't do a blood sample, as I was expecting them to be closely monitoring the cancer antigen (CA) results. Tuesday was also Christmas Eve, meaning we got Kaeli back. Our traditional PJ Hunt took place downstairs so Rory wouldn't have to go up and down the stairs, and it worked out pretty good. Ah, memories. We couldn't find our nativity costumes (I think they got combined with my parents') so we opted for watching the nativity story online rather than acting it out.
Christmas Day we were all together, which was great! Rory came to Star Wars with us, although I think she might have slept through parts of the show. :+) Her energy has been much lower than we all hoped for.
By Friday she finally admitted to me that she's been in some pretty significant pain for several days. At first she thought it might be because we switched sides of the bed? Even though it was Kevin's day off, and it was pretty late into the afternoon, she relented and tried to contact him about the pain. He went ahead and raised her Fentanyl prescription from 50 to 75. We got that picked up and in place Saturday.
By Sunday afternoon Rory confirmed that her pain was much better. It was a bit of a struggle to get her to wake up and sit up long enough to eat when her sugars got low (like, 50's) but as a team we got those back up over 100. Hopefully the team will be vigilant while I'm back at work.
We don't have any medical appointments scheduled for this coming week, but the social worker is scheduled for Friday to come and talk through things with the kids. There are several outings planned (hockey, movie) so we'll see how Rory's energy and pain levels go. Will be nice to have almost another week without school pressures, as our kids don't return until Thursday.
Monday, December 30, 2019
Sunday, December 22, 2019
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!
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!
Monday, December 16, 2019
Whatta Week 2
Rory just finished another "week 2" on the three-week cycle, and is REALLY looking forward to having this week OFF. Over the previous weekend she was actually feeling pretty good, going shopping with Kaeli, attending a high school friend holiday party, and attending church all while I was out of town with Army. Thank goodness for Kaeli and all her help!
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
CA 15-3
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 ...
Monday, December 9, 2019
Another Week 1
Seems Rory is actually "lining up" with the expected reaction to the chemotherapy cycle, where Week 1 she does pretty well, Week 2 is more of a struggle, and Week 3 (no chemo) is truly recovery and "ramp up" of energy. Last week was another "Week 1."
Sunday Rory was still struggling with a lingering cold, so she opted not to attend the blessing of our newest nephew. But, she was feeling okay-ish enough to attend our home ward, which was great! Lots of comments from loving ward members about how great it was to see her again.
Monday night she cut back the new blood thinner to the regular dosage. The previous week was a double-dose to get the new medication up to efficiency faster, but from now on she'll be on a normal level. "From now on" means for the rest of her life. At least it's no longer an injection!
Looking back at the calendar, it was mostly a low-key and low-energy week for her. Which meant she had saved up her energy for the weekend! Although she wasn't feeling good enough to attend the Army Band holiday concert on Thursday night, Friday was the kids' piano recital, Saturday morning she was running errands with Kaeli, Saturday evening was holiday party at a friend's home, and Sunday she still felt good enough to be at church. Yay for a few normal days!
This coming week is jam-packed with appointments, making up for such a slow week previously. So there may be more to report in next week's entry.
Sunday Rory was still struggling with a lingering cold, so she opted not to attend the blessing of our newest nephew. But, she was feeling okay-ish enough to attend our home ward, which was great! Lots of comments from loving ward members about how great it was to see her again.
Monday night she cut back the new blood thinner to the regular dosage. The previous week was a double-dose to get the new medication up to efficiency faster, but from now on she'll be on a normal level. "From now on" means for the rest of her life. At least it's no longer an injection!
Looking back at the calendar, it was mostly a low-key and low-energy week for her. Which meant she had saved up her energy for the weekend! Although she wasn't feeling good enough to attend the Army Band holiday concert on Thursday night, Friday was the kids' piano recital, Saturday morning she was running errands with Kaeli, Saturday evening was holiday party at a friend's home, and Sunday she still felt good enough to be at church. Yay for a few normal days!
This coming week is jam-packed with appointments, making up for such a slow week previously. So there may be more to report in next week's entry.
Sunday, December 1, 2019
Sort of as expected
This was Rory's "week off" meaning no chemo meds. For once this wasn't her WORST week of the cycle. Her side effects seemed to be better under control leading up to this week, so maybe we've found the correctly-dialed-in dosage? And this week has been relatively "good" other than we're all trying to fight off colds. I guess if she's going to have a non-cancer-related illness, it's best to have that when she's not also on heavy duty chemo? Kind of a crummy thing to be thankful for.
Thanksgiving was good. We had dinner with my parents and sister and another couple from the ward. Later that evening we maintained a family tradition by going to see a movie together; this year was Frozen II. Kelsianne is already asking when it's going to be available on Disney+! The show got good reviews from all of us.
I took Rory to another movie on Friday: It's a Beautiful Day. We thought Tom Hanks played Mr Rodgers very well. The storyline was interesting, intertwined in several layers, and definitely not too fast. Rory was still wiped out from the day before and napped a little bit during Friday's show, but still saw enough to enjoy the time.
By Saturday Rory's cold and the past two days' activities had taken their toll; she wasn't able to participate in the family party. We had previously purchased tickets to see Gentri that night, so she mustered the energy to attend that amazing show. We went with my parents, and all were absolutely wowed by the music, showmanship, production, and uplifting stories. A really good night.
I think the week caught up with all of us, since everyone except Kelsianne wound up sleeping after getting home from church. That girl reports being tired during Sacrament Meeting (when she can't talk or walk or play around), but then won't sleep at all the rest of the day. :) Also Rory has a low-grade fever that we'll have to keep an eye on. Because of her blood thinner medications, she's no longer able to take ibuprofen so hopefully Tylenol will be sufficient to keep her temperature down.
Well, we're back on "Week 1" again. Looks like a relatively slow week for medical appointments (Rory does have a huge PET scan on Friday) and I'm slammed with work and Army. Going to be interesting!
Thanksgiving was good. We had dinner with my parents and sister and another couple from the ward. Later that evening we maintained a family tradition by going to see a movie together; this year was Frozen II. Kelsianne is already asking when it's going to be available on Disney+! The show got good reviews from all of us.
I took Rory to another movie on Friday: It's a Beautiful Day. We thought Tom Hanks played Mr Rodgers very well. The storyline was interesting, intertwined in several layers, and definitely not too fast. Rory was still wiped out from the day before and napped a little bit during Friday's show, but still saw enough to enjoy the time.
By Saturday Rory's cold and the past two days' activities had taken their toll; she wasn't able to participate in the family party. We had previously purchased tickets to see Gentri that night, so she mustered the energy to attend that amazing show. We went with my parents, and all were absolutely wowed by the music, showmanship, production, and uplifting stories. A really good night.
I think the week caught up with all of us, since everyone except Kelsianne wound up sleeping after getting home from church. That girl reports being tired during Sacrament Meeting (when she can't talk or walk or play around), but then won't sleep at all the rest of the day. :) Also Rory has a low-grade fever that we'll have to keep an eye on. Because of her blood thinner medications, she's no longer able to take ibuprofen so hopefully Tylenol will be sufficient to keep her temperature down.
Well, we're back on "Week 1" again. Looks like a relatively slow week for medical appointments (Rory does have a huge PET scan on Friday) and I'm slammed with work and Army. Going to be interesting!
Sunday, November 24, 2019
Monday we met with a counselor who works with Rory's primary care physician, and at her recommendation. We went into the session not really knowing what to expect, or where the discussion would lead. She explained that her role is to provide "short-term" counseling, so if we decide that meeting with her is beneficial long-term we'll have to figure out whether insurance will still cover them. But for now, we'll just see how the go over the next few months. The meeting wound up being lots of questions, discussion, and things to consider. Long-term and ultimate "goals" are something we have to think about and put into place. We do have some of the physical needs issues (insurance, funeral, wills, etc) taken care of, although there may need to be some updates. Probably we'll have another discussion with the family this coming weekend, more focused on the kids and how they are processing things. We left the session feeling like it was beneficial, and plan to continue counseling with her.
Immediately following the counselor's session was Rory's regular check-in with the primary care doctor. She is essentially coordinating with all of the various specialists, but has a special rapport with Rory and always takes the time to REALLY listen, ask questions, and show genuine concern. This time she also clarified that Rory's twice-daily injections of insulin should always be given, even if she's got low sugar numbers at the time. We (ok, I) mistakenly thought those injections should be skipped if her blood sugar numbers were below the minimum threshold, which they have been several times. However, those two specific doses are long-term, and release into her system slowly. So skipping them could be harmful. Instead of skipping a dose, she should give her injection and then make sure to eat something right away to boost her numbers. Good clarification.
The check-in with the psychiatrist was pretty simple. His role is to prescribe some of the medications that help with sleep, mood, etc. Since things are going relatively well right now, his appointments are becoming little more than just getting prescription refills taken care of. But that's important, too.
Rory saved up her energy and attended Colton's next basketball game against Herriman on Friday. That "event" was mostly an exhibition of the high school team (player intros, scrimmage, skills contest, etc) with 12 minutes of play against the Vipers. The boys did really well to help the Vipers players feel good, have fun, and it was another good experience. Probably not worth the effort for Rory to be there for just a few minutes, but now we know for next time. (Jordan's event was much more centered on the Vipers, and definitely more worth our time, energy and effort.)
Saturday Rory was able to get some extra rest. (I took the kids to a hockey game, giving her some quiet time to spend with Kaeli.) The result was that Rory felt good enough to attend church for the first time many months!
It's been interesting to see how Rory is adapting to the new chemo. We were told that Week 1 she should generally feel pretty good, perhaps with some negative symptoms creeping in by the end of the week. Week 2 should be anticipated as "rough" as the medication is in full force. Then, Week 3 is the "rest week" and she should be feeling good while she takes a break from the meds. However, her body doesn't seem to be on the same cycle as what the doctors forecast. I've definitely noticed that Week 2 is by far the BEST week for her! This past week was Week 2, and she participated in all of the events noted above, was more available for the kids' school, and seems to have taken fewer naps and had less down time than normal. Week 3, when she's not on the medication, has been the WORST in each of the past few cycles. It's totally backwards and not expected, but I guess we'll see how things go this week to either verify or break the cycle. With Thanksgiving and movies and parties all coming up this week, we certainly hope her energy is up and she's healthy and able to fully participate!
Immediately following the counselor's session was Rory's regular check-in with the primary care doctor. She is essentially coordinating with all of the various specialists, but has a special rapport with Rory and always takes the time to REALLY listen, ask questions, and show genuine concern. This time she also clarified that Rory's twice-daily injections of insulin should always be given, even if she's got low sugar numbers at the time. We (ok, I) mistakenly thought those injections should be skipped if her blood sugar numbers were below the minimum threshold, which they have been several times. However, those two specific doses are long-term, and release into her system slowly. So skipping them could be harmful. Instead of skipping a dose, she should give her injection and then make sure to eat something right away to boost her numbers. Good clarification.
The check-in with the psychiatrist was pretty simple. His role is to prescribe some of the medications that help with sleep, mood, etc. Since things are going relatively well right now, his appointments are becoming little more than just getting prescription refills taken care of. But that's important, too.
Rory saved up her energy and attended Colton's next basketball game against Herriman on Friday. That "event" was mostly an exhibition of the high school team (player intros, scrimmage, skills contest, etc) with 12 minutes of play against the Vipers. The boys did really well to help the Vipers players feel good, have fun, and it was another good experience. Probably not worth the effort for Rory to be there for just a few minutes, but now we know for next time. (Jordan's event was much more centered on the Vipers, and definitely more worth our time, energy and effort.)
Saturday Rory was able to get some extra rest. (I took the kids to a hockey game, giving her some quiet time to spend with Kaeli.) The result was that Rory felt good enough to attend church for the first time many months!
It's been interesting to see how Rory is adapting to the new chemo. We were told that Week 1 she should generally feel pretty good, perhaps with some negative symptoms creeping in by the end of the week. Week 2 should be anticipated as "rough" as the medication is in full force. Then, Week 3 is the "rest week" and she should be feeling good while she takes a break from the meds. However, her body doesn't seem to be on the same cycle as what the doctors forecast. I've definitely noticed that Week 2 is by far the BEST week for her! This past week was Week 2, and she participated in all of the events noted above, was more available for the kids' school, and seems to have taken fewer naps and had less down time than normal. Week 3, when she's not on the medication, has been the WORST in each of the past few cycles. It's totally backwards and not expected, but I guess we'll see how things go this week to either verify or break the cycle. With Thanksgiving and movies and parties all coming up this week, we certainly hope her energy is up and she's healthy and able to fully participate!
Sunday, November 17, 2019
(Finally, a) Slow Week
Friday we met with Rory's Palliative Care nurse who has been managing several of her medications. We'll be watching Rory closely as she tapers off of the Fentanyl slowly. Definitely not interested in stopping it "cold turkey" and cause her to go through withdrawal symptoms!
We did get confirmation from Oncology that Rory will be able to use oral blood thinner medication. She was prescribed twice-daily injections because that's what they "have always used" for patients undergoing active cancer treatment. Dr. Esplin keeps up with much of the current research, and apparently they have finally been studying the effectiveness and side effects of ORAL rather than INJECTION blood thinners, and found them to be adequate. We're waiting for the new prescription to arrive, and it will be nice to reduce her daily injection regimen by two. Being on blood thinners does mean that Ibuprofen is no longer an option for her. Time to buy stock in the maker of Tylenol!
Rory definitely "gears up" for big events, and Saturday morning was one of those. Colton's Special Needs Basketball (Vipers) team was hosted by Jordan High School for an exhibition game, and that's definitely not something to be missed! It's an incredible event for Colton's team, as evidenced by how much they talk about it all year long. Smiles and high-fives and jumping and cheering are in great abundance for the entire event. The school brings out the varsity team, JV team, drill team, cheerleaders, officiating crew, and members of the band. There was a hand-painted GO VIPERS banner decorating one of the walls this year. Lots of family and students show up, mostly to cheer on the Vipers (and good-naturedly "jeer" the Beetdiggers). The teams battle it out pretty fiercely, but the Vipers have a long-standing winning streak. I think this year's final score was 118-117 in favor of the Vipers. And Rory was right there in the stands, hollering and cheering especially loudly every time Colton had the ball.
Otherwise the week has been mostly low-key, low-energy. Some of her more inconvenient symptoms from the Xeloda have returned, such as peeling skin and nephropathy in her feet. Based on instructions from Dr. Esplin that she would be on a "very short leash" after restarting the chemo, to watch for those symptoms, she's reduced her dosage again already. We'll see how things go over the next couple of days, but she is authorized to reduce it even further if symptoms persist.
We did get confirmation from Oncology that Rory will be able to use oral blood thinner medication. She was prescribed twice-daily injections because that's what they "have always used" for patients undergoing active cancer treatment. Dr. Esplin keeps up with much of the current research, and apparently they have finally been studying the effectiveness and side effects of ORAL rather than INJECTION blood thinners, and found them to be adequate. We're waiting for the new prescription to arrive, and it will be nice to reduce her daily injection regimen by two. Being on blood thinners does mean that Ibuprofen is no longer an option for her. Time to buy stock in the maker of Tylenol!
Rory definitely "gears up" for big events, and Saturday morning was one of those. Colton's Special Needs Basketball (Vipers) team was hosted by Jordan High School for an exhibition game, and that's definitely not something to be missed! It's an incredible event for Colton's team, as evidenced by how much they talk about it all year long. Smiles and high-fives and jumping and cheering are in great abundance for the entire event. The school brings out the varsity team, JV team, drill team, cheerleaders, officiating crew, and members of the band. There was a hand-painted GO VIPERS banner decorating one of the walls this year. Lots of family and students show up, mostly to cheer on the Vipers (and good-naturedly "jeer" the Beetdiggers). The teams battle it out pretty fiercely, but the Vipers have a long-standing winning streak. I think this year's final score was 118-117 in favor of the Vipers. And Rory was right there in the stands, hollering and cheering especially loudly every time Colton had the ball.
Otherwise the week has been mostly low-key, low-energy. Some of her more inconvenient symptoms from the Xeloda have returned, such as peeling skin and nephropathy in her feet. Based on instructions from Dr. Esplin that she would be on a "very short leash" after restarting the chemo, to watch for those symptoms, she's reduced her dosage again already. We'll see how things go over the next couple of days, but she is authorized to reduce it even further if symptoms persist.
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