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.
Monday, November 11, 2019
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!
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