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!
Sunday, November 24, 2019
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. :+)
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