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.
Monday, November 11, 2019
PE
Late Saturday night, with literally everyone still awake for some reason, I saw that Rory was on the phone. Strange, since it was after 11pm. I had one of those feelings when she got my attention and asked, "So, do you want to take me to the ER?"
"No," was my response as I started putting on my shoes and coat. Who WANTS to take someone to the ER in the middle of the night?
For a few days prior, Rory had mentioned that feeling of "someone sitting on {her}" and it being difficult to breathe. Finally heeding Dr. Esplin's comment that she doesn't complain enough, and more likely listening to promptings from the Holy Ghost, she put in a call to the on-call oncologist who recommended a visit to the ER since she'd had those symptoms for a couple of days. When we got to the ER it seemed like we were the only ones there; apparently that wasn't the case just a few hours earlier when the place was extra busy. But, Rory got right in and they started their investigation. Concerned that she couldn't breathe well earlier in the night, she had borrowed dad's oximeter to check her oxygen saturation, and the numbers generally came in at 95%. Looking back, she usually does hit 100% so maybe we should have been more concerned early on. Her heart rate was also elevated slightly at about 115 bpm. That was still the case while we were in the ER.
Almost before her in-processing was complete a tech was there to do an EKG. Last time she reported similar symptoms they suspected heart issues, so that wasn't a surprise to me.
The ER nurse made a good attempt at starting an IV, but pretty quickly put in a call for someone trained on the ultrasound machine to come and help. "Sorry, I probably should have warned you up front that you'd need the ultrasound tech." I guess my own brain was too tired to make that connection and help her out; Rory's nurses pretty much ALWAYS need the additional technology assist to start those lines. The nurse returned with a student along to observe and assist. "See that right there ... it's an artery. Look underneath that right here; I think that's the line we want." Rory almost enjoys being one to help train up-and-coming medical professionals. Even with the ultrasound assisting, it took some work but eventually the line was in, and blood was drawn.
What seemed like only minutes later (although, I might have dozed off in the chair) a mobile xray machine was wheeled in and they took film of Rory's chest. I say "film" because that's still what they call it, even though on the machine's monitor the image was immediately available and was obviously digital. Ah, technology.
Just as I was about to nod off again, a certified gurney driver came in and took Rory down for her contrast CT. I didn't realize until talking with a doctor on Sunday how amazing those scans really are. It's more than just a "picture" of the internal organs. More on that later in this post.
After that early flurry of activity, things slowed down a bit. It took awhile before the doctor was able to give us the official diagnosis: pulmonary embolism (PE). In between her nurse checks I did what I imagine the hospital staff dread: I went searching for information online.
https://www.medicinenet.com/pulmonary_embolism/article.htm#pulmonary_embolism_blood_clot_in_the_lung_overview
Seems that there are pretty scary outcomes of PE, especially when not treated right away. So even though we were both worn out, and only one of us (not me) was in a bed and got a little bit of sleep, it was obviously very good that we were there in the hospital. The treatment strategy is to put the patient on a blood thinner to prevent the gooey clot mass from increasing in size. The thinner also reduces the chance that other clots to also move up into the lungs. They typically start at the ends of the extremities, such as lower arms or legs, where blood flow is relatively low anyway, and then "break off" and then move up to and typically through the heart before getting stuck in the lungs. So while attempting to prevent another clot, the body is given time to heal by re-absorbing the clot material. We already have to be careful because Rory's new chemo medication causes increased bleeding and bruising issues, which will be even MORE pronounced while she's on blood thinners. While it may take 4-6 weeks for a clot to be completely healed, that medication typically is given for 3-6 months or sometimes even for the rest of the patient's life to reduce future clotting risks.
One of the visitors while in the ER was a pharmacist. I was able to help with Rory's rather impressive (to us) list of medications, making sure her chart was updated with all the latest dosages. (Yay! I actually did something to help!) His other contribution was to share two of his young son's recent jokes:
"What is orange and sounds like a parrot? A carrot."
This next one he apologized for before sharing, justifying it because he has five sons at home who still think "potty humor" is funny. This one sort of is, actually:
"What do you call someone who doesn't fart? A private tooter."
Eventually the team, including Rory's non-IMC oncology group, agreed that she could be admitted right there at Alta View. There was some discussion about transporting her to the main IMC hospital in Murray again because she's in active cancer treatment, and other thoughts of transporting her all the way down to Utah Valley Hospital to be closer to her oncology team. But, thankfully, they all agreed that Alta View was well-enough equipped to deal with the embolism and would stay in contact with everyone else. So, we headed upstairs.
This was our first time in the main refurbished hospital. Everything and everyone was very nice. Rory had made a rather long list of things for me to pick up from home, expecting (based on that bootleg internet research) to have to remain for several days at a minimum. The overnight doctor came in and had further discussion with us, and said her plan was simply to wait until the full ultrasound department was staffed early on Sunday, and get a real-time look at how her heart was dealing with the blockage. Somehow I never realized that the various chambers of the human heart don't pump nearly the same pressure, with the right side pumping at a MUCH lower pressure than the left. That's because the left side pumps oxygenated blood to the rest of the body, but the right side only pumps blood into the fragile lungs. You know those blood pressure numbers typically measured, such as 120 / 80? Those are millimeters of mercury, and represent typical "left-side" blood pressures. The right side can be as low as 2! So if the right side has to work hard AT ALL, such as from a blockage in the lungs, that can pretty easily stress that part of the heard muscle. Although the CT "snapshot" looked good, getting that ultrasound in the morning would give much better information about her heart.
https://www.heart.org/en/health-topics/high-blood-pressure/the-facts-about-high-blood-pressure/pulmonary-hypertension-high-blood-pressure-in-the-heart-to-lung-system
Somewhere about 6:30 I headed home to pick up just a few things on the list. I had texted my parents and Colton and Kaeli through the night, but most had not been awake and didn't see those messages. So I waited until my parents and kids were awake so I could fill them in a little bit on what had happened while they were asleep. The kids seemed to take it OK, and I got them dropped off to church on my way back to the hospital.
By the time I was back to the room, they had already come and completed the ultrasound. Rory said it was another "very cool" mobile unit that they used right there in her room. She was up and poking around at her breakfast, and was quite alert and talkative for most of the morning. I thought the plan was for me to drop off her pillows and medications and a few other items, then return home for a few hours to sleep while the rest of the family was at church. But, the nurses and doctors kept saying that everything looked good so they were going to get us out of the hospital as soon as possible. (I should have gone home for that nap.)
The doctors were very good to check in and explain what was happening, and what the plan will be going forward. Rory's PE was deemed to be a "Saddle Pulmonary Embolism" which is of course not great. "Saddle" means the clot straddles BOTH sides of pulmonary arteries.
https://www.ausmed.com/cpd/articles/what-is-a-saddle-pulmonary-embolism-pe
The magic ultrasound and CT scans were able to show more than just a simple visual; the doctors were able to "see" that even though the pressures in the right side of Rory's heart were elevated, and even though her heart rate was elevated in the body's attempt to compensate for having those lung arteries blocked, there was no permanent damage or issues with the heart muscle. They were also able to tell from density detection that the clot really is blood, and not fatty material or cancer cells or anything else. The doctor also said that although Rory was being sent home with the injection-based Lovenox that the practice has always used for patients experiencing active cancer treatment, there are other recent studies that suggest some of the traditional oral blood thinners may be just as effective. So we'll have to see what Dr Esplin suggests and prescribes this week. (The hospital pharmacy only had enough of the Lovenox for 5 days, so we'll be getting another prescription soon.)
One of the check-ins was from someone on the PT staff. The more she asked questions about setup at home, the way Rory gets around, accommodations, etc, the more it sounded like the stuff Kaeli has been studying in her OTA classes. Jen held up her hands with fingers interlocked, stating that there in the hospital, Occupational Therapy (OT) and Physical Therapy (PT) overlap quite a bit. They just don't have OT's on staff all the time, so she covers for those concerns quite a bit. She got Rory a walker, and in true drill sergeant style made her walk around the hallways for awhile. It's always good when they can get their patients up and moving around. In addition to just being up, she made several suggestions for exercises and movements Rory can do from a chair or even in bed, in hopes of reducing the chances for additional future clots.
Seems like we got home about 1:30pm, in plenty of time for the planned dinner with Rory's Miller cousins. From the moment we got to the ER, she was expressing a desire to be home for that dinner, and the team came through for us. I finally got to bed about 2:00pm, and didn't wake up until Rory's medication alarm rang at 8:30pm! Oops, I slept through dinner. I went back to sleep until my alarm rang at 4:00am. So, I'm writing this a day after everything was happening; hopefully Rory will fill in any "gaps" in my journal.
"No," was my response as I started putting on my shoes and coat. Who WANTS to take someone to the ER in the middle of the night?
For a few days prior, Rory had mentioned that feeling of "someone sitting on {her}" and it being difficult to breathe. Finally heeding Dr. Esplin's comment that she doesn't complain enough, and more likely listening to promptings from the Holy Ghost, she put in a call to the on-call oncologist who recommended a visit to the ER since she'd had those symptoms for a couple of days. When we got to the ER it seemed like we were the only ones there; apparently that wasn't the case just a few hours earlier when the place was extra busy. But, Rory got right in and they started their investigation. Concerned that she couldn't breathe well earlier in the night, she had borrowed dad's oximeter to check her oxygen saturation, and the numbers generally came in at 95%. Looking back, she usually does hit 100% so maybe we should have been more concerned early on. Her heart rate was also elevated slightly at about 115 bpm. That was still the case while we were in the ER.
Almost before her in-processing was complete a tech was there to do an EKG. Last time she reported similar symptoms they suspected heart issues, so that wasn't a surprise to me.
The ER nurse made a good attempt at starting an IV, but pretty quickly put in a call for someone trained on the ultrasound machine to come and help. "Sorry, I probably should have warned you up front that you'd need the ultrasound tech." I guess my own brain was too tired to make that connection and help her out; Rory's nurses pretty much ALWAYS need the additional technology assist to start those lines. The nurse returned with a student along to observe and assist. "See that right there ... it's an artery. Look underneath that right here; I think that's the line we want." Rory almost enjoys being one to help train up-and-coming medical professionals. Even with the ultrasound assisting, it took some work but eventually the line was in, and blood was drawn.
What seemed like only minutes later (although, I might have dozed off in the chair) a mobile xray machine was wheeled in and they took film of Rory's chest. I say "film" because that's still what they call it, even though on the machine's monitor the image was immediately available and was obviously digital. Ah, technology.
Just as I was about to nod off again, a certified gurney driver came in and took Rory down for her contrast CT. I didn't realize until talking with a doctor on Sunday how amazing those scans really are. It's more than just a "picture" of the internal organs. More on that later in this post.
After that early flurry of activity, things slowed down a bit. It took awhile before the doctor was able to give us the official diagnosis: pulmonary embolism (PE). In between her nurse checks I did what I imagine the hospital staff dread: I went searching for information online.
https://www.medicinenet.com/pulmonary_embolism/article.htm#pulmonary_embolism_blood_clot_in_the_lung_overview
Seems that there are pretty scary outcomes of PE, especially when not treated right away. So even though we were both worn out, and only one of us (not me) was in a bed and got a little bit of sleep, it was obviously very good that we were there in the hospital. The treatment strategy is to put the patient on a blood thinner to prevent the gooey clot mass from increasing in size. The thinner also reduces the chance that other clots to also move up into the lungs. They typically start at the ends of the extremities, such as lower arms or legs, where blood flow is relatively low anyway, and then "break off" and then move up to and typically through the heart before getting stuck in the lungs. So while attempting to prevent another clot, the body is given time to heal by re-absorbing the clot material. We already have to be careful because Rory's new chemo medication causes increased bleeding and bruising issues, which will be even MORE pronounced while she's on blood thinners. While it may take 4-6 weeks for a clot to be completely healed, that medication typically is given for 3-6 months or sometimes even for the rest of the patient's life to reduce future clotting risks.
One of the visitors while in the ER was a pharmacist. I was able to help with Rory's rather impressive (to us) list of medications, making sure her chart was updated with all the latest dosages. (Yay! I actually did something to help!) His other contribution was to share two of his young son's recent jokes:
"What is orange and sounds like a parrot? A carrot."
This next one he apologized for before sharing, justifying it because he has five sons at home who still think "potty humor" is funny. This one sort of is, actually:
"What do you call someone who doesn't fart? A private tooter."
Eventually the team, including Rory's non-IMC oncology group, agreed that she could be admitted right there at Alta View. There was some discussion about transporting her to the main IMC hospital in Murray again because she's in active cancer treatment, and other thoughts of transporting her all the way down to Utah Valley Hospital to be closer to her oncology team. But, thankfully, they all agreed that Alta View was well-enough equipped to deal with the embolism and would stay in contact with everyone else. So, we headed upstairs.
This was our first time in the main refurbished hospital. Everything and everyone was very nice. Rory had made a rather long list of things for me to pick up from home, expecting (based on that bootleg internet research) to have to remain for several days at a minimum. The overnight doctor came in and had further discussion with us, and said her plan was simply to wait until the full ultrasound department was staffed early on Sunday, and get a real-time look at how her heart was dealing with the blockage. Somehow I never realized that the various chambers of the human heart don't pump nearly the same pressure, with the right side pumping at a MUCH lower pressure than the left. That's because the left side pumps oxygenated blood to the rest of the body, but the right side only pumps blood into the fragile lungs. You know those blood pressure numbers typically measured, such as 120 / 80? Those are millimeters of mercury, and represent typical "left-side" blood pressures. The right side can be as low as 2! So if the right side has to work hard AT ALL, such as from a blockage in the lungs, that can pretty easily stress that part of the heard muscle. Although the CT "snapshot" looked good, getting that ultrasound in the morning would give much better information about her heart.
https://www.heart.org/en/health-topics/high-blood-pressure/the-facts-about-high-blood-pressure/pulmonary-hypertension-high-blood-pressure-in-the-heart-to-lung-system
Somewhere about 6:30 I headed home to pick up just a few things on the list. I had texted my parents and Colton and Kaeli through the night, but most had not been awake and didn't see those messages. So I waited until my parents and kids were awake so I could fill them in a little bit on what had happened while they were asleep. The kids seemed to take it OK, and I got them dropped off to church on my way back to the hospital.
By the time I was back to the room, they had already come and completed the ultrasound. Rory said it was another "very cool" mobile unit that they used right there in her room. She was up and poking around at her breakfast, and was quite alert and talkative for most of the morning. I thought the plan was for me to drop off her pillows and medications and a few other items, then return home for a few hours to sleep while the rest of the family was at church. But, the nurses and doctors kept saying that everything looked good so they were going to get us out of the hospital as soon as possible. (I should have gone home for that nap.)
The doctors were very good to check in and explain what was happening, and what the plan will be going forward. Rory's PE was deemed to be a "Saddle Pulmonary Embolism" which is of course not great. "Saddle" means the clot straddles BOTH sides of pulmonary arteries.
https://www.ausmed.com/cpd/articles/what-is-a-saddle-pulmonary-embolism-pe
The magic ultrasound and CT scans were able to show more than just a simple visual; the doctors were able to "see" that even though the pressures in the right side of Rory's heart were elevated, and even though her heart rate was elevated in the body's attempt to compensate for having those lung arteries blocked, there was no permanent damage or issues with the heart muscle. They were also able to tell from density detection that the clot really is blood, and not fatty material or cancer cells or anything else. The doctor also said that although Rory was being sent home with the injection-based Lovenox that the practice has always used for patients experiencing active cancer treatment, there are other recent studies that suggest some of the traditional oral blood thinners may be just as effective. So we'll have to see what Dr Esplin suggests and prescribes this week. (The hospital pharmacy only had enough of the Lovenox for 5 days, so we'll be getting another prescription soon.)
One of the check-ins was from someone on the PT staff. The more she asked questions about setup at home, the way Rory gets around, accommodations, etc, the more it sounded like the stuff Kaeli has been studying in her OTA classes. Jen held up her hands with fingers interlocked, stating that there in the hospital, Occupational Therapy (OT) and Physical Therapy (PT) overlap quite a bit. They just don't have OT's on staff all the time, so she covers for those concerns quite a bit. She got Rory a walker, and in true drill sergeant style made her walk around the hallways for awhile. It's always good when they can get their patients up and moving around. In addition to just being up, she made several suggestions for exercises and movements Rory can do from a chair or even in bed, in hopes of reducing the chances for additional future clots.
Seems like we got home about 1:30pm, in plenty of time for the planned dinner with Rory's Miller cousins. From the moment we got to the ER, she was expressing a desire to be home for that dinner, and the team came through for us. I finally got to bed about 2:00pm, and didn't wake up until Rory's medication alarm rang at 8:30pm! Oops, I slept through dinner. I went back to sleep until my alarm rang at 4:00am. So, I'm writing this a day after everything was happening; hopefully Rory will fill in any "gaps" in my journal.
All was quiet ...
This week was mostly "quiet." Which means it was hard, and "nothing tastes good." Dr. Esplin is starting to be concerned (not yet "worried") about her weight loss that is coming from not eating very well.
One day while talking to Rory over Alexa, she told me that my mom was using a "sander" on her. Huh? I chalked it up to her probably having low blood sugar at the time, maybe not quite awake, whatever. But then a day later I saw a machine similar to this in the house:
Yeah, I could see how she thought it looked like a belt sander. Glad that it's helping relieve some of her headache pains.
For those keeping track, we're at the end of her official "week off" from chemo, plus a few extra days "off" the week before. I don't think oncology is going to be too pleased when they hear how tired, sick, and low-energy she's felt this week. And by Friday she was reporting that it felt like someone was sitting on her, making it hard to breathe. (See the next post for more on that.) Major bummer that the week didn't go as scripted, since she was supposed to really ENJOY life during the week off.
Mid-day on Saturday was Kelsianne's first guitar recital. It was not something Rory would miss for the world, and her monumental effort to be up and attend paid off. Kelsianne was the first soloist of the night, and I caught sight of tears running down Rory's face. She was somewhat embarrassed about not being able to "keep things in check" but later confirmed they were happy tears. "Moving back to Utah was SO HARD, but now it's amazing to see the opportunities the kids have that they wouldn't likely have had back in Oregon." And after listening to Kelsianne practice "Rudolph the Red-Nosed Reindeer" over and over and over, hearing and seeing her play so well in front of family and strangers without even appearing nervous at all was sweet music indeed.
One day while talking to Rory over Alexa, she told me that my mom was using a "sander" on her. Huh? I chalked it up to her probably having low blood sugar at the time, maybe not quite awake, whatever. But then a day later I saw a machine similar to this in the house:
Yeah, I could see how she thought it looked like a belt sander. Glad that it's helping relieve some of her headache pains.
For those keeping track, we're at the end of her official "week off" from chemo, plus a few extra days "off" the week before. I don't think oncology is going to be too pleased when they hear how tired, sick, and low-energy she's felt this week. And by Friday she was reporting that it felt like someone was sitting on her, making it hard to breathe. (See the next post for more on that.) Major bummer that the week didn't go as scripted, since she was supposed to really ENJOY life during the week off.
Mid-day on Saturday was Kelsianne's first guitar recital. It was not something Rory would miss for the world, and her monumental effort to be up and attend paid off. Kelsianne was the first soloist of the night, and I caught sight of tears running down Rory's face. She was somewhat embarrassed about not being able to "keep things in check" but later confirmed they were happy tears. "Moving back to Utah was SO HARD, but now it's amazing to see the opportunities the kids have that they wouldn't likely have had back in Oregon." And after listening to Kelsianne practice "Rudolph the Red-Nosed Reindeer" over and over and over, hearing and seeing her play so well in front of family and strangers without even appearing nervous at all was sweet music indeed.
Sunday, November 3, 2019
You Don't Complain Enough
Tuesday was another appointment with the Oncologist. Dr Esplin started off by saying, "Wow, what a rough month." He had obviously heard about the seizures, pain meds, difficulty sleeping, low energy, etc. As per usual he asked about her pain levels, and Rory gave her usual response about balancing medications, some days a "10" and sometimes a "2". She always praises her entire team for keeping on top of things and making her as comfortable as possible.
Esplin started leaning towards reducing the dosage on the current chemo medication, saying that it sounded like with everything he'd heard about "We are beating you up too much."
About that time I reminded Rory that she had made a list of things to talk about with him. "Oh yeah ... sometimes my feet and ends of my fingers sort of hurt." He looked at her hands, noting the discoloration at the ends of her fingers and the sores forming between her fingers. She mentioned how difficult it was sometimes to hold onto cups and bowls because she either couldn't feel her fingers, or they hurt too much, or she was too "shaky." She had a laugh when telling him that we'd gone back to using plastic bowls and cups so that whey they get dropped occasionally, they won't break. Esplin commented that was yet more evidence that we needed to back off on the dosage, as these were exactly the symptoms they look for with this medication.
Rory mentioned almost in passing that she was grateful for the new nausea medication, because at least she hasn't been throwing up nearly as often as before even though the nausea is constantly there. "Wait, you're actually throwing up? OK, DEFINITELY need to back off on the dosage. In fact, we probably could think about you taking the rest of this week 'off' in addition to next wee." (The current medication is a 2-week-on, 1-week-off cycle and she was on day 4 of the second week.)
I had to remind Rory to show off her bruises. They were still there from the last sets of labs she had drawn, some "mystery bruses" on her arms, and for some reason the knuckles of her hands also look bruised. She had been told that one of the medications' side effects is a propensity to bruise, and she had first-hand proof of that and the slow healing process from her injection sites, other minor cuts or wounds. She made some joke that it looked like she had been beaten up, when of course she hadn't. Esplin turned that around to say that it seemed obvious to him that the new medication obviously WAS beating her up, and now he was more convinced than ever that she was to take the rest of this week "off" and then reduce the dosage when starting back up again after another week. He was obviously concerned, and maybe a bit flustered from the description of the symptoms he was dragging out of her.
Next it was his turn to ask her about specific symptoms. Hot/cold flashes? Oh yeah, those are the worst, having to leave the bedroom door window partially open even when it's 9 degrees outside and Preston has to sleep with a stocking cap on. Bowel movement? Yeah, those haven't been so great (TMI, I know). Energy level? Well, I did get to spend a couple of hours with my kids on Monday morning. "Lady, you do not complain enough." She tried to say that she felt like she complained way too much, but he turned it right around and said in his personal, loving way that she definitely does not complain too much, and in fact does not complain enough. And she was banned from chemo meds for the rest of the week, was to cut the dosage by a specified amount when starting up again and was to have a "very low threshhold" on the symptoms to likely cut the dosage AGAIN in short order.
During a review of the available labs, he said that most of the numbers looked really good to him. Kidney and liver functions were stable, blood cell counts were as expected. There was one number (I can't remember which; I'll have to go look that up) that was concerning, and which he said was further evidence that the dosage should be scaled back. He addressed concerns about cutting back too far, as we had to do with iBrance years ago, by saying that he had started her on a rather high dosage (2000mg twice a day, or 4000mg per day) because her tumor marker had spiked so high. Now that he was finally getting symptom feedback and lab results, she'll be cutting back to 3500mg initially and told her to drop back to 3000mg if ANY of her symptoms return. He said that he has very few patients who can tolerate 4000mg or even 3500mg for very long, and even 3000mg is a "good dose." It's not uncommon to drop all the way back to even 2000mg eventually. It all depends on symptoms, lab results and tumor marker response. All that to tell her to "complain more often" when has those symptoms! He was going to be interested in the lab results from the sample taken that day as well, to help round out the story.
We had a discussion about long-term use of this medication, trying to get some idea of how long we might expect to be making use of it. He had squeezed out every last month that he could from the Affinitor until we got to the point of radiation therapy and high tumor markers, but Rory had probably been on it for about a year longer than might have originally been predicted. I was curious about what his experience has been with patients on the Xeloda. Obviously he doesn't have a crystal ball and can't see definitively into the future, but I pressed him for averages or even anectodal results from his practice. He finally said that "months and months" is expected. Whether "months and months" turns into "years and years" will depend on her body's response and ongoing tracking of results.
As we were wrapping up the appointment, Rory mentioned that while it's difficult she is coming to terms with telling people that she's not going to get better, but rather we're trying to slow down how quickly things get worse. Emotionally she talked about how she's cherishing the time she has, how she's starting to look at some events as the "last time" for some of them. His response? "I just have to hug you." It's probably not all that common for other people's appointments to end with a hug, but that's the sort of doctor and person he his.
Since taking an early break from the Xeloda this week, I've definitely noticed immediate reductions in symptoms. Rory reports that she's getting feeling back in her fingers, and based on the number and frequency of calls and emails her energy level is definitely up. Yesterday she attended a bridal shower for a young lady we knew back in Oregon, and when Colton and I got back from our last soccer game of the season, we found that Rory and Kaeli had decided to go to a movie. Even after the long day, she mentioned to me last night that she was still hopeful of being able to attend church in the morning. Esplin said we could expect pretty immediate relief from some of the symptoms, and we should see a regular pattern of a decent week 1 on the medication, noticeable difficulties in week 2 on the medication, and then really look forward to a GOOD WEEK during the "off" time. If the end of this week is any indication, it appears that for once Rory's body is responding as expected. And now maybe we can get HER to complain a little more as we're watching for those symptoms. :+)
Esplin started leaning towards reducing the dosage on the current chemo medication, saying that it sounded like with everything he'd heard about "We are beating you up too much."
About that time I reminded Rory that she had made a list of things to talk about with him. "Oh yeah ... sometimes my feet and ends of my fingers sort of hurt." He looked at her hands, noting the discoloration at the ends of her fingers and the sores forming between her fingers. She mentioned how difficult it was sometimes to hold onto cups and bowls because she either couldn't feel her fingers, or they hurt too much, or she was too "shaky." She had a laugh when telling him that we'd gone back to using plastic bowls and cups so that whey they get dropped occasionally, they won't break. Esplin commented that was yet more evidence that we needed to back off on the dosage, as these were exactly the symptoms they look for with this medication.
Rory mentioned almost in passing that she was grateful for the new nausea medication, because at least she hasn't been throwing up nearly as often as before even though the nausea is constantly there. "Wait, you're actually throwing up? OK, DEFINITELY need to back off on the dosage. In fact, we probably could think about you taking the rest of this week 'off' in addition to next wee." (The current medication is a 2-week-on, 1-week-off cycle and she was on day 4 of the second week.)
I had to remind Rory to show off her bruises. They were still there from the last sets of labs she had drawn, some "mystery bruses" on her arms, and for some reason the knuckles of her hands also look bruised. She had been told that one of the medications' side effects is a propensity to bruise, and she had first-hand proof of that and the slow healing process from her injection sites, other minor cuts or wounds. She made some joke that it looked like she had been beaten up, when of course she hadn't. Esplin turned that around to say that it seemed obvious to him that the new medication obviously WAS beating her up, and now he was more convinced than ever that she was to take the rest of this week "off" and then reduce the dosage when starting back up again after another week. He was obviously concerned, and maybe a bit flustered from the description of the symptoms he was dragging out of her.
Next it was his turn to ask her about specific symptoms. Hot/cold flashes? Oh yeah, those are the worst, having to leave the bedroom door window partially open even when it's 9 degrees outside and Preston has to sleep with a stocking cap on. Bowel movement? Yeah, those haven't been so great (TMI, I know). Energy level? Well, I did get to spend a couple of hours with my kids on Monday morning. "Lady, you do not complain enough." She tried to say that she felt like she complained way too much, but he turned it right around and said in his personal, loving way that she definitely does not complain too much, and in fact does not complain enough. And she was banned from chemo meds for the rest of the week, was to cut the dosage by a specified amount when starting up again and was to have a "very low threshhold" on the symptoms to likely cut the dosage AGAIN in short order.
During a review of the available labs, he said that most of the numbers looked really good to him. Kidney and liver functions were stable, blood cell counts were as expected. There was one number (I can't remember which; I'll have to go look that up) that was concerning, and which he said was further evidence that the dosage should be scaled back. He addressed concerns about cutting back too far, as we had to do with iBrance years ago, by saying that he had started her on a rather high dosage (2000mg twice a day, or 4000mg per day) because her tumor marker had spiked so high. Now that he was finally getting symptom feedback and lab results, she'll be cutting back to 3500mg initially and told her to drop back to 3000mg if ANY of her symptoms return. He said that he has very few patients who can tolerate 4000mg or even 3500mg for very long, and even 3000mg is a "good dose." It's not uncommon to drop all the way back to even 2000mg eventually. It all depends on symptoms, lab results and tumor marker response. All that to tell her to "complain more often" when has those symptoms! He was going to be interested in the lab results from the sample taken that day as well, to help round out the story.
We had a discussion about long-term use of this medication, trying to get some idea of how long we might expect to be making use of it. He had squeezed out every last month that he could from the Affinitor until we got to the point of radiation therapy and high tumor markers, but Rory had probably been on it for about a year longer than might have originally been predicted. I was curious about what his experience has been with patients on the Xeloda. Obviously he doesn't have a crystal ball and can't see definitively into the future, but I pressed him for averages or even anectodal results from his practice. He finally said that "months and months" is expected. Whether "months and months" turns into "years and years" will depend on her body's response and ongoing tracking of results.
As we were wrapping up the appointment, Rory mentioned that while it's difficult she is coming to terms with telling people that she's not going to get better, but rather we're trying to slow down how quickly things get worse. Emotionally she talked about how she's cherishing the time she has, how she's starting to look at some events as the "last time" for some of them. His response? "I just have to hug you." It's probably not all that common for other people's appointments to end with a hug, but that's the sort of doctor and person he his.
Since taking an early break from the Xeloda this week, I've definitely noticed immediate reductions in symptoms. Rory reports that she's getting feeling back in her fingers, and based on the number and frequency of calls and emails her energy level is definitely up. Yesterday she attended a bridal shower for a young lady we knew back in Oregon, and when Colton and I got back from our last soccer game of the season, we found that Rory and Kaeli had decided to go to a movie. Even after the long day, she mentioned to me last night that she was still hopeful of being able to attend church in the morning. Esplin said we could expect pretty immediate relief from some of the symptoms, and we should see a regular pattern of a decent week 1 on the medication, noticeable difficulties in week 2 on the medication, and then really look forward to a GOOD WEEK during the "off" time. If the end of this week is any indication, it appears that for once Rory's body is responding as expected. And now maybe we can get HER to complain a little more as we're watching for those symptoms. :+)
Monday, October 28, 2019
Whatta Week
Report from Rory this week: "Colton is turning into an amazing 'helicopter parent.'" Since witnessing last week's episode, he's been the one to literally hover over her, checking on her often and making sure she's on her medications schedule. I guess having a strong need for having and keeping a schedule is coming in as useful! We loaded up the Alexa devices with reminders for many things, including Rory's medications, and all of the kids are very good to drop whatever they are doing to make sure she has water, meds, snack, and whatever else she needs.
Monday I attended her regular Dr appointment with her primary care physician. Mostly Dr. Schaplow is the manager of all the other specialists, but she's really good to listen to all of what's going on and offer her support and ideas. For better or worse, Rory had another seizure right there during the appointment. We think maybe all the rapid-fire discussion of all the things going on might have triggered that place of stress in her brain at that very moment. She is going to look into the possibility of Tricare covering some visits to their newly-arrived therapist to try to figure out more of those stress triggers and hopefully set up some safeguards.
This was week 1 again of the next round of chemo. Sounds like Rory was mostly "down" with some brief slivers of light. Thankfully some members of the ward were happy to step in and help with visits, drivers for Kylan, and other pick-me-ups, especially while my parents were out of town.
Saturday the ward sponsored a community "Fall Festival" complete with carnival-type games for the kids. Rory decided last-minute that she had enough energy to give it a try, and she came home both thrilled at the chance to visit with so many people, and thoroughly exhausted after visiting with so many people. Was the best kind of therapy to exchange hugs with people she hadn't seen for way too long.
Yesterday we kind of had to boss her to get up and eat after we found her blood sugars back down into the 40's. (Doctor says anything below 100 is considered "Go Time" for food intervention.) We'll probably have to move up her Sunday morning 9:00 levels checks, medications and breakfast since the rest of us all leave before 8:30 and she apparently will choose sleep over snacks. Hey, if we're learning something new each week to make things work better, that's progress, right?
Got another week full of appointments and events. Hoping to keep that positive momentum going.
Monday I attended her regular Dr appointment with her primary care physician. Mostly Dr. Schaplow is the manager of all the other specialists, but she's really good to listen to all of what's going on and offer her support and ideas. For better or worse, Rory had another seizure right there during the appointment. We think maybe all the rapid-fire discussion of all the things going on might have triggered that place of stress in her brain at that very moment. She is going to look into the possibility of Tricare covering some visits to their newly-arrived therapist to try to figure out more of those stress triggers and hopefully set up some safeguards.
This was week 1 again of the next round of chemo. Sounds like Rory was mostly "down" with some brief slivers of light. Thankfully some members of the ward were happy to step in and help with visits, drivers for Kylan, and other pick-me-ups, especially while my parents were out of town.
Saturday the ward sponsored a community "Fall Festival" complete with carnival-type games for the kids. Rory decided last-minute that she had enough energy to give it a try, and she came home both thrilled at the chance to visit with so many people, and thoroughly exhausted after visiting with so many people. Was the best kind of therapy to exchange hugs with people she hadn't seen for way too long.
Yesterday we kind of had to boss her to get up and eat after we found her blood sugars back down into the 40's. (Doctor says anything below 100 is considered "Go Time" for food intervention.) We'll probably have to move up her Sunday morning 9:00 levels checks, medications and breakfast since the rest of us all leave before 8:30 and she apparently will choose sleep over snacks. Hey, if we're learning something new each week to make things work better, that's progress, right?
Got another week full of appointments and events. Hoping to keep that positive momentum going.
Sunday, October 20, 2019
More helpers?
Yesterday (Saturday) Rory had visitors in the morning, and we all went to Cross-E for the pumpkin patch outing. So in all, it was a good day for her. True, we got "rained out" at the ranch, and they closed up the site before we got to do much, so that wasn't so great. However, we all got to go, spent time together, got wet together, and made memories. Oh, and we got Rory's new favorite donuts!
We decided on the way home to stop by Deseret Book to pick up an ordered copy of last year's Christmas Special with Kristen Chenowith and the Choir at Temple Square, something for which Rory had made a special request. Since the rest of our day kind of went south with the wind and rain and mixed snow, we made the decision to do dinner at Chuck-A-Rama. Everyone certainly had their fill, including Rory, so the day ended well!
This morning when I checked in with Rory she said she wasn't feeling well enough to go to church. We kind of figured after such an energy-draining day yesterday, that today would likely be one of her "recovery" days. She wasn't awake when we left for the ward activity at the Salt Lake Cemetery, and was asleep when we were meeting for family dinner. She had requested a special discussion with all the kids about her seizure last Friday and plans going forward, so that got done after some good Come, Follow Me discussion.
As we headed into some family game time with the grandparents, we heard Rory calling from downstairs. When I got to her, she was frantically asking what day it was, and what time it was. She started sobbing that she had "slept the whole day away" and was more than distraught that she had missed out on everything. Her emotions were much more severe than seemed reasonable, and eventually we were able to talk enough to find out she really HAD slept the whole day, meaning she hadn't even eaten anything! Blood sugar levels were checked and found to be in the 40's, which to me explained her extreme emotional reaction. We heated up the dinner for her, got her medications taken, and slowly her speech and overall emotional state seemed to stabilize. The kids came down to check on us, and we had some additional discussion and made plans to ensure she doesn't miss meals again in the future. During that discussion Colton realized that Rory wasn't responding, so we walked her down to the bedroom just as another seizure started up. This time I was able to coach all of the kids through the event, and they were true troopers! Colton held his mom's hands, asking her to respond by squeezing his hands. The kids collected bottles of cold water. After a couple of minutes the shaking subsided and she came back to regular consciousness. Again, the kids were all very attentive and mostly seemed to handle things.
Except Colton.
He really struggled for the rest of the night, and every few minutes felt like he needed to check on Rory or thought he heard her medical whistle or just decided to go see if she was OK. He asked for a blessing, and afterwards has apparently calmed down for the evening. Rory repeatedly told him that she's going to be OK, and that she wants him to be able to continue with his exercise and lessons and school and other activities, that she has help here at home to allow him to continue being himself. I'm hopeful that he is able to process all of what's going on, to the point that he will be able to have a semblance of normalcy while still being able to give attention to his mother. His comment, "I'm not ready to lose her yet" was both heartbreaking and hopeful. I guess it was good that her first cancer came when these three kids were basically too young to really understand the gravity of the situation. This time around they certainly DO "get it" and the concern is obviously how they will ultimately react. I would never wish this on anyone's kids; what a blessing to have older siblings and grandparents and friends who are ready to step in and help them.
We decided on the way home to stop by Deseret Book to pick up an ordered copy of last year's Christmas Special with Kristen Chenowith and the Choir at Temple Square, something for which Rory had made a special request. Since the rest of our day kind of went south with the wind and rain and mixed snow, we made the decision to do dinner at Chuck-A-Rama. Everyone certainly had their fill, including Rory, so the day ended well!
This morning when I checked in with Rory she said she wasn't feeling well enough to go to church. We kind of figured after such an energy-draining day yesterday, that today would likely be one of her "recovery" days. She wasn't awake when we left for the ward activity at the Salt Lake Cemetery, and was asleep when we were meeting for family dinner. She had requested a special discussion with all the kids about her seizure last Friday and plans going forward, so that got done after some good Come, Follow Me discussion.
As we headed into some family game time with the grandparents, we heard Rory calling from downstairs. When I got to her, she was frantically asking what day it was, and what time it was. She started sobbing that she had "slept the whole day away" and was more than distraught that she had missed out on everything. Her emotions were much more severe than seemed reasonable, and eventually we were able to talk enough to find out she really HAD slept the whole day, meaning she hadn't even eaten anything! Blood sugar levels were checked and found to be in the 40's, which to me explained her extreme emotional reaction. We heated up the dinner for her, got her medications taken, and slowly her speech and overall emotional state seemed to stabilize. The kids came down to check on us, and we had some additional discussion and made plans to ensure she doesn't miss meals again in the future. During that discussion Colton realized that Rory wasn't responding, so we walked her down to the bedroom just as another seizure started up. This time I was able to coach all of the kids through the event, and they were true troopers! Colton held his mom's hands, asking her to respond by squeezing his hands. The kids collected bottles of cold water. After a couple of minutes the shaking subsided and she came back to regular consciousness. Again, the kids were all very attentive and mostly seemed to handle things.
Except Colton.
He really struggled for the rest of the night, and every few minutes felt like he needed to check on Rory or thought he heard her medical whistle or just decided to go see if she was OK. He asked for a blessing, and afterwards has apparently calmed down for the evening. Rory repeatedly told him that she's going to be OK, and that she wants him to be able to continue with his exercise and lessons and school and other activities, that she has help here at home to allow him to continue being himself. I'm hopeful that he is able to process all of what's going on, to the point that he will be able to have a semblance of normalcy while still being able to give attention to his mother. His comment, "I'm not ready to lose her yet" was both heartbreaking and hopeful. I guess it was good that her first cancer came when these three kids were basically too young to really understand the gravity of the situation. This time around they certainly DO "get it" and the concern is obviously how they will ultimately react. I would never wish this on anyone's kids; what a blessing to have older siblings and grandparents and friends who are ready to step in and help them.
Friday, October 18, 2019
Dizzy yet?
Getting dizzy from this ride? I think I am.
Tuesday Rory said was a REALLY good day. She felt good, no pain, had energy. She spent most of the day with the kids, had an in-home visit from a good friend, and probably more that I'm forgetting. Since this is her "OFF" week from chemo, that was certainly something we all hoped to see more of this week. However, Wednesday was a half-way good day - I figured after such a GREAT day on Tuesday, maybe she had over-done it and was worn out? By Thursday it was a NO GOOD day again, mostly due to a raging headache accompanied by extreme fatigue and nausea again. Hoping for another upward trend?
Thursday we also met with the Palliative Care team again. Kevin in particular speaks to Rory exactly the way she needs. He listens, responds in a way that proves he's hearing and understanding and incorporating what she tells him, and she really appreciates that. So even on a day like yesterday that was so crummy, she always feels better after consulting with that team. The result of that consult is we're trying a different medication for the nausea, and by mid-day Friday Rory said it was much better. So write that one down as a "win." They still aren't ready to start tapering off from the heavy-duty pain meds, though, so we'll probably keep dealing with fatigue issues.
Another struggle is that nothing seems to taste good to her right now. That of course leads to low blood sugars which could be contributing to both the headaches and nausea. Very hard to "just eat" when anything and everything is gross, and when she feels like (and sometimes does) she's just going to throw it all up anyway. But hopefully that will improve for her over time.
This afternoon was another seizure spell, probably the first one since the day after we got home from the hospital. I recently got a couple more Amazon "Dot" devices, specifically so we have one near Rory and another one in my office. So today I was talking my dad and Kaeli through what to do and say for Rory, based on what I observed from the nurses. It took a few minutes, but she came back around eventually and was back to normal. As usual, she didn't remember what had happened. This time she called just before it started and told me she felt like what it felt like last week, but that she wasn't shaking, which was odd. And then she had the episode. So maybe we'll get some warning before they happen? As a reminder, the doctors concluded these seizures aren't epileptic, meaning they aren't medically dangerous. Although that's reassuring on some level, they sure are scary for her and for us, though!
Keeping our fingers cross that Rory is able to go with us to Cross-E Ranch tomorrow. She really enjoyed going last year after having it recommended, and she is looking forward to it being an annual family pumpkin patch tradition.
Tuesday Rory said was a REALLY good day. She felt good, no pain, had energy. She spent most of the day with the kids, had an in-home visit from a good friend, and probably more that I'm forgetting. Since this is her "OFF" week from chemo, that was certainly something we all hoped to see more of this week. However, Wednesday was a half-way good day - I figured after such a GREAT day on Tuesday, maybe she had over-done it and was worn out? By Thursday it was a NO GOOD day again, mostly due to a raging headache accompanied by extreme fatigue and nausea again. Hoping for another upward trend?
Thursday we also met with the Palliative Care team again. Kevin in particular speaks to Rory exactly the way she needs. He listens, responds in a way that proves he's hearing and understanding and incorporating what she tells him, and she really appreciates that. So even on a day like yesterday that was so crummy, she always feels better after consulting with that team. The result of that consult is we're trying a different medication for the nausea, and by mid-day Friday Rory said it was much better. So write that one down as a "win." They still aren't ready to start tapering off from the heavy-duty pain meds, though, so we'll probably keep dealing with fatigue issues.
Another struggle is that nothing seems to taste good to her right now. That of course leads to low blood sugars which could be contributing to both the headaches and nausea. Very hard to "just eat" when anything and everything is gross, and when she feels like (and sometimes does) she's just going to throw it all up anyway. But hopefully that will improve for her over time.
This afternoon was another seizure spell, probably the first one since the day after we got home from the hospital. I recently got a couple more Amazon "Dot" devices, specifically so we have one near Rory and another one in my office. So today I was talking my dad and Kaeli through what to do and say for Rory, based on what I observed from the nurses. It took a few minutes, but she came back around eventually and was back to normal. As usual, she didn't remember what had happened. This time she called just before it started and told me she felt like what it felt like last week, but that she wasn't shaking, which was odd. And then she had the episode. So maybe we'll get some warning before they happen? As a reminder, the doctors concluded these seizures aren't epileptic, meaning they aren't medically dangerous. Although that's reassuring on some level, they sure are scary for her and for us, though!
Keeping our fingers cross that Rory is able to go with us to Cross-E Ranch tomorrow. She really enjoyed going last year after having it recommended, and she is looking forward to it being an annual family pumpkin patch tradition.
Wednesday, October 9, 2019
Plan forward
Rory was discharged from the hospital yesterday afternoon with a repeat of instructions / recommendation to meet with a Psychologist to investigate other non-epilepsy potential triggers for the seizures. We have that appointment set for Thursday. They also set an appointment to meet with their epilepsy team ... on JANUARY 8! Seems a bit "far" into the future to me, but I guess we'll see how the next few months go.
Everyone was very happy to have Rory back home. She did have at least one other event during the evening, and we're trying not to be worried about them. Yeah, that's not so easy. But hopefully some extra rest will help calm things down.
Will check in here again when there is more to update. Thanks to everyone who has let Rory know she is in your thoughts and prayers!
Everyone was very happy to have Rory back home. She did have at least one other event during the evening, and we're trying not to be worried about them. Yeah, that's not so easy. But hopefully some extra rest will help calm things down.
Will check in here again when there is more to update. Thanks to everyone who has let Rory know she is in your thoughts and prayers!
Tuesday, October 8, 2019
What it isn't
Just heard again from the doctor. He confirmed that the epilepsy team specialist agreed that Rory's tremors are not the dangerous epileptic variety. They will make a follow-up appointment with that specialty team a couple of days from now, and he recommended she meet with her psychologist as well. Between all the specialists we'll get a good plan in place.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
Tough Love
I mentioned the EEG team is removing the electrodes. One of the members is having a "tough love" discussion with her right now that is probably worth me writing down so she can remember it later.
Rory's reaction started towards the self blaming that she's been wasting everyone's time since they haven't been able to definitively figure out the cause. The tech got down "in her face" to try to turn around her approach. There was a lot of "Hey, there was no time wasted at all from you coming in here. Please don't cry, listen to me. I'm not even kidding here. There are so many reasons why your body is doing this. Just because it isn't coming from the brain just means there is one of a ton of other possible reasons. Obviously what you're experiencing is real, so don't be upset or cry that you think you're making things up or are wasting our time. NONE of our time has been wasted for you."
Yeah, he was pretty blunt and I hope it got through to her. I know that guilt comes quickly to her, and it's a natural reaction, but he was pretty in-her-face with his own reaction to her reaction. But in the end it was out of concern and support and I hope she remembers that part of it.
Rory's reaction started towards the self blaming that she's been wasting everyone's time since they haven't been able to definitively figure out the cause. The tech got down "in her face" to try to turn around her approach. There was a lot of "Hey, there was no time wasted at all from you coming in here. Please don't cry, listen to me. I'm not even kidding here. There are so many reasons why your body is doing this. Just because it isn't coming from the brain just means there is one of a ton of other possible reasons. Obviously what you're experiencing is real, so don't be upset or cry that you think you're making things up or are wasting our time. NONE of our time has been wasted for you."
Yeah, he was pretty blunt and I hope it got through to her. I know that guilt comes quickly to her, and it's a natural reaction, but he was pretty in-her-face with his own reaction to her reaction. But in the end it was out of concern and support and I hope she remembers that part of it.
Roller coaster
Rory took a selfie with her EEG hookups:
It was interesting to me that the whole EEG setup includes video monitoring:
She had several more "events" during the night, which was exactly what they were hoping for.
The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.
So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.
We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.
It was interesting to me that the whole EEG setup includes video monitoring:
She had several more "events" during the night, which was exactly what they were hoping for.
The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.
So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.
We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.
Monday, October 7, 2019
Here we go again
After arriving at drill tonight Rory called to say she was heading to the ER. Much of the afternoon she had been experiencing tremors, more than usual, and at times she couldn’t get her computer mouse to do what she wanted. Her hand would periodically spasm, and she was having some difficulty speaking. After talking to a nurse over the phone they decided that going to the ER was warranted. Maybe it was a reaction to some of the new medication? Or maybe something else? After living with cancer for the past 8 years, a little trip to the ER wasn’t all that worrisome. Maybe we are just de-sensitized. Kaeli planned to take Rory to the hospital and I planned to stay at drill.
It was only a few minutes later that I got a frantic call from Kaeli saying, “You need to be here NOW.” I drove across the valley to find a party going on in room 9. The story eventually came out. After walking into the ER on her own, apparently Rory had some difficulty during checkin. The doctors described trembling as “partial seizures” because she had responsive eyes and was able to speak again almost immediately after the tremor stopped. Also before I arrived they did a brain CT.
They had several staff come in and check whether they could start an IV, but eventually decided to call in the specialist with the ultrasound machine. The parade continued with doctors coming in to tell us that they had consulted with the on call oncologist who didn’t think the medications were causing the tremors, so they thought it must be a neurological issue. THAT meant she would be transported to and admitted at the big hospital in Murray where the IMC neurological specialists are located. While all this was going on the IV nurse was prepping, until a much more seizure happened. This time the doctors came in to observe, and they agreed that one was a “real seizure.”
Eventually they got all the fluids they wanted to start some testing, and the transport ambulance arrived to take her away. I went back home to change clothes, gather some items that Rory wanted (especially her pillow), and talk to the kids about what was going on. Then it was off to the hospital.
We are on the 14th floor and it looks like we will have a great view in the morning. I talked to the doctor for just a minute to describe the episodes at Alta View, and she told me that the initial CT looked really good. As I am writing this there are a couple of techs gluing electrodes to Rory’s head which will monitor brain waves (EEG) for at least the next 24 hours. Odd to think that we hope she has another seizure so they can record it. The techs have really got Rory talking about the kids, we are sharing photos of the grand babies, talking school and music, and more. All while they are using some VERY nasty-smelling glue to affix the EEG equipment.
Might have another update shortly, but I want to pause here to email the blog link out to everyone with at least this much info.
It was only a few minutes later that I got a frantic call from Kaeli saying, “You need to be here NOW.” I drove across the valley to find a party going on in room 9. The story eventually came out. After walking into the ER on her own, apparently Rory had some difficulty during checkin. The doctors described trembling as “partial seizures” because she had responsive eyes and was able to speak again almost immediately after the tremor stopped. Also before I arrived they did a brain CT.
They had several staff come in and check whether they could start an IV, but eventually decided to call in the specialist with the ultrasound machine. The parade continued with doctors coming in to tell us that they had consulted with the on call oncologist who didn’t think the medications were causing the tremors, so they thought it must be a neurological issue. THAT meant she would be transported to and admitted at the big hospital in Murray where the IMC neurological specialists are located. While all this was going on the IV nurse was prepping, until a much more seizure happened. This time the doctors came in to observe, and they agreed that one was a “real seizure.”
Eventually they got all the fluids they wanted to start some testing, and the transport ambulance arrived to take her away. I went back home to change clothes, gather some items that Rory wanted (especially her pillow), and talk to the kids about what was going on. Then it was off to the hospital.
We are on the 14th floor and it looks like we will have a great view in the morning. I talked to the doctor for just a minute to describe the episodes at Alta View, and she told me that the initial CT looked really good. As I am writing this there are a couple of techs gluing electrodes to Rory’s head which will monitor brain waves (EEG) for at least the next 24 hours. Odd to think that we hope she has another seizure so they can record it. The techs have really got Rory talking about the kids, we are sharing photos of the grand babies, talking school and music, and more. All while they are using some VERY nasty-smelling glue to affix the EEG equipment.
Might have another update shortly, but I want to pause here to email the blog link out to everyone with at least this much info.
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