By now probably everyone knows that Rory passed away on Thursday morning. I'll try to write up how the week went, so those who are interested have a better idea of the timing of things. Also some of the tender mercies and miracles from the week. I'm likely to accidentally leave out a lot of the details, so please feel free to add to this (and any other) blog post in the COMMENTS section below.
Sunday morning after Rory couldn't swallow anymore, the on-call nurse suggested that I try giving her some children's Tylenol by syringe to help keep the fever down. Even if she couldn't swallow, she would be able to absorb some of the medication just by having it in her mouth. Rory wasn't at all happy about taking that medication; must taste nasty. Not knowing how much to give, and because it would be staying in her mouth, I gave half of one small syringe which was apparently 0.5mL. When the nurse came later in the morning she had a bit of a laugh, because Rory needed a full 15mL! Fortunately for me, the nurse was the one who administered the medication and incurred the not-so-happy glares from her.
Because of her nausea, we also started a new medication: Haloperidol. Apparently they typically use that medication for end-of-life to combat dementia and agitation due to mental changes and anxiety, but it also helps with nausea. However, during the day her agitation only increased and her reaction eventually labeled "adverse" so the medication was dropped. More on that later.
At the end of the morning visit from the on-call nurse, she told me while upstairs (out of earshot from Rory) that she was definitely in the DECLINE stage. That meant she would continue to have difficulty swallowing or speaking, her appetite would continue to be low or non-existent, and her body would continue progressing. The nurse noticed several "pauses" in Rory's breathing even with the CPAP on, so she suggested that we forego using it. She said the machine would no longer help much regulating the breathing, and if it had any effect at all it would be to prolong the process.
That morning we also started giving Rory a liquid version of Dilaudid, her heavy-duty pain medication that she has seemed to tolerate well. However, by the end of the day she was also actively fighting against taking that medication by syringe; again, it must not taste good at all. But, I was able to "encourage" her to take it several times through the day and she didn't exhibit any pain symptoms.
The afternoon was full of visits: Stake Presidency, Bishop, ward members, choir director, extended family, and others. Although she couldn't speak, she was able to respond by shaking or nodding her head, and turned towards the voices of those who were there. More evidence that hearing is one sense that lasts past some of the others.
Monday the "agitation" symptom was more pronounced. As the body's shut-down process progresses, sometimes the brain isn't ready to follow suit and there's a bit of a battle going on. The minor shaking is sometimes referred to as "terminal tremors." I caught her trying to sit up and get out of bed a couple of times, small spasms and shaking. The medication we started on Sunday was supposed to help control that agitation and movement, but increasing the dosage during the day only seemed to make them worse. So later that afternoon was when the doctor and nurse decided to stop administering that med, and moved to a different one: Midazolan (Versed). They started at 0.2mL per hour, which they said was a tiny dose, to allow us to watch for any adverse reactions. Fortunately there didn't seem to be any, but I was giving the bolus (extra dose) every single half hour to try to keep her calm. The medication was administered continuously through a pump, with a sub-skin needle in her abdomen. It would work for about 26 minutes, but the pump limited the extra meds to only every 30 minutes. At least it seemed like something she could tolerate, and helped her calm way, way down.
Thinking that some of her agitation might be due to pain, and because it was getting harder and harder to get Rory to be able to swallow the liquid medication, the doctor directed that Rory get a second Fentanyl patch. So instead of 100 micrograms per hour, which I gather is pretty high, she would be on 200 micrograms until we had to move to another pain medication.
Although she was calm, much of the time her eyes were open. Rather than have her stare at a blank wall, we started playing videos for her on the TV. She really likes the Blue Planet series, and having those on did seem to capture her attention and hopefully diverted her from the anxiety and agitation I suspect she was feeling.
Kaeli finally asked about the medications ... didn't we stop the chemo in an attempt to improve her QUALITY OF LIFE, but now she was essentially being sedated? What happened to that quality? We talked about having the couple of days over the previous weekend when her symptoms were minimized, when she was able to talk and walk and laugh and be with us. Unfortunately, we had very quickly moved into the COMFORT CARE stage; the quality had been there, but not for nearly as long as we all wanted.
On Tuesday Rory's hospice doctor visited. Apparently home visits aren't all that common, but this doctor is just that way and tries to visit with all of her patients and families. I think she's also at a Director level, and does quite a bit of traveling and training for other agencies. (Monday she was driving back from Idaho when we were trying to figure out the medications.) It was short, but nice of her to come. After walking upstairs (again, out of earshot from Rory) I asked what kind of timeline she thought we might have. She said because Rory was young and "has a lot of reserves" compared to her older patients, it could be as long as two weeks, but probably less than that. (I later did a bit of internet research - the scariest kind - and read that the human body typically can only go for 3 or 4 days without water, which she wasn't getting.) The nurse that came a bit later was more realistic in her estimate of likely only having a matter of days.
Rory's agitation grew throughout the day. Several times she pulled herself up over the rails of the bed, or was half hanging off and onto the recliner chair. Other times she just wanted to sit up and hunch over. As I was texting the nurse about these symptoms, she said the doctor had been doing some research and was formulating another plan. I got more than a little bit worried, sad, even started to feel guilty since I was the one who had signed off on this whole hospice thing. (A few days prior Rory had resisted the idea of hospice, saying, "They are just going to drug me until I die.") I laid down next to her, just holding her, and we had a 1-way chat. I told her how sorry I was for putting her through this, how I felt (and still felt) that it was the best and only decision. Through my tears I told her that I loved her, and I hoped she would be able to forgive me for what she was going through. I even asked her to somehow let me know, someday, that she had forgiven me.
Yeah so that afternoon was ROUGH to say the least. I was having trouble getting through to our nurse (probably helping other patients). Eventually I called the main hospice number to send in my report again, and ask for some help. During the middle of all of this the social worker happened to text me, asking how I was doing. I told her how rough things were, and about the guilt I was feeling. She also tried to contact the nurse, but without success. She was about to have another on-call nurse sent out, when ours finally texted that she was on the way. I'm pretty sure she's no longer pain-free, I texted. I'm almost there. Now she's even crying, the pain is so bad. Finally the nurse arrived. The doctor said that it had been a couple of days since Rory went off her pain medications "cold turkey" since she couldn't swallow as of Sunday morning, and she was very likely experiencing some severe withdrawal side effects. I guess that made sense. So the nurse said were going to increase the Dilaudid dose ... BY A LOT. Remember we were at 0.2mL per hour? The nurse re-programmed the pump to go to 2.0mL per hour. And I almost continuously gave another 1.0mL every 30 minutes. Then we watched. Rory definitely calmed down a lot, which was a big relief. But, she still was acting agitated and in pain. So not too much later the nurse got the OK to increase the dosing again, this time to 4.0mL per hour. For you math nerds, that's 20 times where they started.
A couple of hours later the nurse checked in by text, and I told her that Rory was still writhing and rolling a little bit, but not as much as before. I also had a thought that she was overdue for her 5-year kidney stone battle (she had been on a regular schedule for quite awhile ... at last check there were stones formed, but not yet moving) and that explained to me the severe pain breaking through all the medications she was on. There was no way to know, but those symptoms of trying to move positions, powering through meds to bend over sideways, hunching over the bedrails, all of that seemed to point to kidney stones on top of everything else. They made the decision to add Dilaudid to her pump, so it would be continuously administered and I would have the ability to give a bolus dose if it appeared she was in pain again. So in the middle of the night an on-call nurse came and hooked up another pump. Within just a few minutes she calmed right down. As the night progressed I had to give fewer and fewer of the bolus doses.
During the night, Rory had several times where she was "gasping" in her breathing. When I was snuggled in, I could also feel her heartbeat racing and strong, then would slow, then would be almost imperceptible, and then it would suddenly get strong again. Had some more nice 1-way chats with her again. But by morning her breathing was almost completely normal, which is something she hadn't been able to achieve during sleep for years without the CPAP. Almost like something in her mind or body had re-booted that breathing signal.
Wednesday morning the nurse checked in with me again, asking what I would like for the hospice team to do. I suggested we let Rory sleep for the morning, and maybe get some help changing clothes and another bed bath in the afternoon. Even though parts of her body felt cool-ish (color wasn't lost, so there was still decent circulation), other parts were strangely hot.
Had an email exchange with one of my cousins, who said she'd felt the nearby presence of our grandparents and her father. I knew her grandma Miller and aunts were near. Charisse said that earlier that morning she had decided to put on a pair of our other grandma's earrings because she felt close, too. It was a sweet moment knowing that so many were nearby to be with Rory during her transition.
About noon one of the pumps sounded an alarm. It was the pump for that anti-agitation medication that was first started at that really low dose, and then cranked up by a factor of 20, and then we decided to have the nurse wait to come out later in the day. So it had completely run out. Thankfully I was able to maintain her calmness with a couple of added bolus doses of the Dilaudid until the nurse arrived with the new medication. This time the mix was five times more concentrated, so the bag could last for several days or even a week.
That afternoon the hospice social worker stopped by the house again to talk with the kids. She got some of them to open up a little bit, and it was a good discussion. I'm grateful that family support is such a big part of the hospice program. Kylan chose to sit in the recliner next to Rory for most of the afternoon to play his Switch games. :+)
An aide stopped by in the afternoon and I helped her get Rory into clean garments. She provided another bed bath, and we talked about her family. She mentioned that seeing all our family photos on the wall for the past few days had inspired her to set up a family photo session for her own family, since she didn't have a family picture that included her 2-year-old grandchild. I'm sure Rory was beaming on the inside, knowing that her passion for family photos had impacted one of her caregivers in that way.
As the afternoon and evening wore on, Rory's breathing started to include a gurgling sound. We were told that was likely a sign of the final stage of the process. A bit of again-scary internet research led me to the moniker "death rattle" to describe the sound, which is caused when the patient can't control the oral secretions and it becomes part of every breath. All the research says it doesn't cause any distress or discomfort for the patient, but it can be quite disconcerting for family and care givers. I raised the head of the bed which seemed to help a little bit. The nurse said my description made it sound like the final change was taking place, and she was going to send a nurse out to check.
The on-call nurse came and took some vital signs (blood pressure, temperature, etc). She checked on medication levels, talked to Rory, and then talked to us. She concurred that Rory was in the final, "active dying" stage. She said it was very hard to predict timelines, because only Rory's body would determine the remaining length of life. "It could be two days, but I think it will be much less time." In fact, she said to call her directly if Rory passed during the night, rather than going through the main hospice phone number.
Eventually I got everyone sent to bed, and I took up my spot next to Rory on the bed. It was a tender time to just hold her the way she liked, stroke her hair and face, and have a bit more 1-way conversation. (I probably had more 1-way conversation with her over the past couple of days than in the entire 26 years of marriage, and more than 30 years of being best friends.) The rattle got more pronounced and her breathing slowed. For what seemed like a long time she stopped breathing altogether, so long that I actually looked at my watch to note the time. I teased her a bit when she startled me with a big gasp, but only a few minutes later I did note the time of per passing as 12:24am on Thursday, 13 February 2020.
Kaeli and my parents had asked me to wake them if Rory passed during the night, so I knocked on a few doors. Colton said he wanted to stay asleep. Caiden came in to be with us, as did Kelsianne. Eventually Kylan also came in. I had called the nurse, who arrived around 1:00am and started the preparations for the mortuary who were also on their way. The nurse did a little bit of cleaning, positioning, and made notes in her log. The mortuary directors arrived close to 2:00am in their suits, left a rose, and were very respectful and understanding. Rory was put onto their gurney, and a beautiful quilt used to cover her from the cold and rain outside. It took the two of them plus myself and dad to get her up the stairs, and then it was done.
Everything else that happens after this moment is going to be added to the old family blog that Rory used to write. Please feel free to follow along at https://baxterfamilycircusof8.blogspot.com/. There is a lot from later on Thursday and the rest of this past week that I will write about eventually. You won't want to miss out on the service, miracles, and amazing wonders that I will include there. Please forgive me if it takes awhile for me to post there, though.
I am so grateful that Rory passed away in our home, and in my arms. We were and are such huge parts of each other's lives, it is going to be more than difficult to adjust and move forward. But, at the same time I know she is pain-free, happy, and preparing a place for me to join her someday. I love her, forever and always.
Sunday, February 16, 2020
Sunday, February 9, 2020
Semi-week update
I probably should have done better during the week to record more details, but the general story will have to suffice.
Thursday morning we met with the hospice nurse for the official admitting process. She was very kind, took her time with my parents and me, and answered all of our questions the best she could. She also gave us a summary of what the end-of-life process typically looks like, so we will recognize the changes and symptoms. Rory was not part of that initial administrative meeting, but the nurse did check in on Rory before leaving. She also brought in some supplies (protective covers, gloves, liners, etc). After some discussion, I was finally convinced to schedule an aide to come in that afternoon/evening to help Rory with a bed bath, since I already had plans to take the three younger kids to a basketball game. However, sounds like Rory didn't "hit it off" with the aide at first. Looking back, I think Rory was mostly upset that someone was coming in to do things that Rory felt like she could still do for herself. While I was gone with the kids that night, Kaeli spent the evening with her mom. Sounds like that was mostly OK, until having to deal with a couple of bouts of "accidents." Rory later talked about how grateful she was that Kaeli was there with her, knew just how to help, and cleaned everything up. Rory makes sure that the typically-thankless job of cleaning up is definitely a well-thanked job. I hope Kaeli hows how deeply that Rory loves and appreciates her. Rory has had many discussions in the past week with providers and visitors talking about how kind, gentle, patient and understanding Kaeli is, and how wonderful she will be as a professional provider.
Friday turned out to be a really good day. The nurse stopped by with a few additional supplies. While at work I got a call from the social worker wanting to set up an appointment. At first I thought we could wait until next week, but eventually we went ahead and scheduled it for that same day. She was also very nice, and met with the entire family. We had to do some administrative paperwork, but she also helped us all participate in a little bit of an introductory discussion. The hospice team will continue meeting with us for about a year to help through bereavement, but we'll be transitioning to another social worker eventually because ours is about 7 months pregnant. :+) I went back to work for a bit, until a somewhat frantic call from Rory asking me to come home right then. When I got home, we just sat on the bed and talked for awhile. She had had one of her "special dreams" (she's had many over her lifetime) and she needed to talk about it. Speaking was a little difficult, but she talked about seeing a wheel with lots of spokes. Each spoke was a person, and she clearly saw that the location on her spoke was very near the end. There was other meaning that she couldn't clearly communicate to me, so we just sat and talked and cried and comforted each other. It didn't take long before the phone was ringing again, and when I got back to her she asked to meet with the kids to talk about the dream. She was still able to walk and started chatting with Caiden. The call I took was hospice delivery saying they were coming with a bed, so I was re-arranging the large sitting area to make space. Rory said that her discussion with Caiden was really, really good. She was talking with Kaeli while the bed was set up, and they kept talking even after my aunt and uncle arrived with dinner. When they were done talking, Rory was still feeling well enough that she walked all the way up the stairs to visit and hopefully was able to eat a little bit. After picking up Colton from work, we settled in for our planned family movie night. Kylan and Colton both claimed they didn't remember ever seeing Princess Bride, so we paid the whopping $0.97 for the Amazon rental and had a good time laughing together.
Saturday morning I helped with Rory's morning medications, and she was definitely struggling more. Perhaps Friday wore her out. I was gone for Army stuff all morning, but managed to get through all the medical and administrative stations fairly quickly and was excused for the rest of the day. I think it was really good for me to be home, as Rory was definitely not doing well and needed help. Then the parade started! Her closest cousin came for a visit with her cute daughter and husband. Rory was in-and-out quite a bit, but they still had a nice visit. Tyler's boys arrived at the house with Kari's daughter, so they hung out upstairs playing games with our boys. The next arrivals were Bart (my youngest brother) and his family, who had been out visiting with his aunt-in-law who was also in the hospital. Bart said that his daughter really wanted to come and visit with Rory, and they shared some sweet time together. My sister, Kari, has been visiting from Oregon to help with Tyler's family. She's also been giving some great first-hand updates from her time at the hospital with Tyler. She and her daughter also came down and spent time with Rory. They found out that they share some common medications! I think Kari had brought Heidi (Tyler's wife) with her from the hospital, and she spent some time upstairs with her boys since she hadn't seen them for awhile. Before leaving, she also came down and sat and talked (mostly in whispers) with Rory. Later Rory told me a little bit about their conversation, which had confirmed their deep personal connection. Heidi and the boys all gave hugs before heading out. By the time all those visits were done, was Rory ever worn out! We put her to bed pretty early, and she may have been asleep before we even got to the bed. :+)
This morning has been rough. I woke up about 3:00 and noticed her hands and arms were very warm to the touch. The thermometer confirmed a fever almost to 102 degrees. I was able to get her to take a couple of Tylenol, although I later found that she hadn't completely swallowed all of them. But, by the time I checked again a couple of hours later her fever was back down to 99.6. I got her up to the bathroom, which was an intense struggle. I decided to move her to the hospital bed out in the big room, as several people are planning visits today and I didn't want her to have to move again. I tried to help get her morning medications, but she wasn't able to draw any water through her straw. She asked for juice (she really likes the mango varieties) but I couldn't get her to drink any of that, either. She kept looking at me, and when I encouraged her to drink she would nod like she thought she was drinking, but it didn't work. At one point she got really agitated because she could feel that she was going to throw up. I got the bucket to her just in time. So, no morning meds or juice or even water so far. The nurse talked to us about using swabs to provide water when Rory isn't able to drink or swallow, but I don't think we have those yet. So, I've texted the nurse and may end up calling the on-call office if I don't hear back soon. I went ahead and moved her CPAP machine so she can use that in the big sitting area, and have set up one of the Echo Dot speakers where we can play ocean sounds for her. I won't be going to Army today; that absence has already been pre-approved. I also moved the small recliner chair over next to her bed so I can lay down next to her. For now she seems to be comfortable, or at least just sleeping.
As you can tell things are happening rapidly around here. If there are additional updates I may or may not have time to type them into the blog for awhile. Hope these updates are helping you keep up with Rory at this time.
Thursday morning we met with the hospice nurse for the official admitting process. She was very kind, took her time with my parents and me, and answered all of our questions the best she could. She also gave us a summary of what the end-of-life process typically looks like, so we will recognize the changes and symptoms. Rory was not part of that initial administrative meeting, but the nurse did check in on Rory before leaving. She also brought in some supplies (protective covers, gloves, liners, etc). After some discussion, I was finally convinced to schedule an aide to come in that afternoon/evening to help Rory with a bed bath, since I already had plans to take the three younger kids to a basketball game. However, sounds like Rory didn't "hit it off" with the aide at first. Looking back, I think Rory was mostly upset that someone was coming in to do things that Rory felt like she could still do for herself. While I was gone with the kids that night, Kaeli spent the evening with her mom. Sounds like that was mostly OK, until having to deal with a couple of bouts of "accidents." Rory later talked about how grateful she was that Kaeli was there with her, knew just how to help, and cleaned everything up. Rory makes sure that the typically-thankless job of cleaning up is definitely a well-thanked job. I hope Kaeli hows how deeply that Rory loves and appreciates her. Rory has had many discussions in the past week with providers and visitors talking about how kind, gentle, patient and understanding Kaeli is, and how wonderful she will be as a professional provider.
Friday turned out to be a really good day. The nurse stopped by with a few additional supplies. While at work I got a call from the social worker wanting to set up an appointment. At first I thought we could wait until next week, but eventually we went ahead and scheduled it for that same day. She was also very nice, and met with the entire family. We had to do some administrative paperwork, but she also helped us all participate in a little bit of an introductory discussion. The hospice team will continue meeting with us for about a year to help through bereavement, but we'll be transitioning to another social worker eventually because ours is about 7 months pregnant. :+) I went back to work for a bit, until a somewhat frantic call from Rory asking me to come home right then. When I got home, we just sat on the bed and talked for awhile. She had had one of her "special dreams" (she's had many over her lifetime) and she needed to talk about it. Speaking was a little difficult, but she talked about seeing a wheel with lots of spokes. Each spoke was a person, and she clearly saw that the location on her spoke was very near the end. There was other meaning that she couldn't clearly communicate to me, so we just sat and talked and cried and comforted each other. It didn't take long before the phone was ringing again, and when I got back to her she asked to meet with the kids to talk about the dream. She was still able to walk and started chatting with Caiden. The call I took was hospice delivery saying they were coming with a bed, so I was re-arranging the large sitting area to make space. Rory said that her discussion with Caiden was really, really good. She was talking with Kaeli while the bed was set up, and they kept talking even after my aunt and uncle arrived with dinner. When they were done talking, Rory was still feeling well enough that she walked all the way up the stairs to visit and hopefully was able to eat a little bit. After picking up Colton from work, we settled in for our planned family movie night. Kylan and Colton both claimed they didn't remember ever seeing Princess Bride, so we paid the whopping $0.97 for the Amazon rental and had a good time laughing together.
Saturday morning I helped with Rory's morning medications, and she was definitely struggling more. Perhaps Friday wore her out. I was gone for Army stuff all morning, but managed to get through all the medical and administrative stations fairly quickly and was excused for the rest of the day. I think it was really good for me to be home, as Rory was definitely not doing well and needed help. Then the parade started! Her closest cousin came for a visit with her cute daughter and husband. Rory was in-and-out quite a bit, but they still had a nice visit. Tyler's boys arrived at the house with Kari's daughter, so they hung out upstairs playing games with our boys. The next arrivals were Bart (my youngest brother) and his family, who had been out visiting with his aunt-in-law who was also in the hospital. Bart said that his daughter really wanted to come and visit with Rory, and they shared some sweet time together. My sister, Kari, has been visiting from Oregon to help with Tyler's family. She's also been giving some great first-hand updates from her time at the hospital with Tyler. She and her daughter also came down and spent time with Rory. They found out that they share some common medications! I think Kari had brought Heidi (Tyler's wife) with her from the hospital, and she spent some time upstairs with her boys since she hadn't seen them for awhile. Before leaving, she also came down and sat and talked (mostly in whispers) with Rory. Later Rory told me a little bit about their conversation, which had confirmed their deep personal connection. Heidi and the boys all gave hugs before heading out. By the time all those visits were done, was Rory ever worn out! We put her to bed pretty early, and she may have been asleep before we even got to the bed. :+)
This morning has been rough. I woke up about 3:00 and noticed her hands and arms were very warm to the touch. The thermometer confirmed a fever almost to 102 degrees. I was able to get her to take a couple of Tylenol, although I later found that she hadn't completely swallowed all of them. But, by the time I checked again a couple of hours later her fever was back down to 99.6. I got her up to the bathroom, which was an intense struggle. I decided to move her to the hospital bed out in the big room, as several people are planning visits today and I didn't want her to have to move again. I tried to help get her morning medications, but she wasn't able to draw any water through her straw. She asked for juice (she really likes the mango varieties) but I couldn't get her to drink any of that, either. She kept looking at me, and when I encouraged her to drink she would nod like she thought she was drinking, but it didn't work. At one point she got really agitated because she could feel that she was going to throw up. I got the bucket to her just in time. So, no morning meds or juice or even water so far. The nurse talked to us about using swabs to provide water when Rory isn't able to drink or swallow, but I don't think we have those yet. So, I've texted the nurse and may end up calling the on-call office if I don't hear back soon. I went ahead and moved her CPAP machine so she can use that in the big sitting area, and have set up one of the Echo Dot speakers where we can play ocean sounds for her. I won't be going to Army today; that absence has already been pre-approved. I also moved the small recliner chair over next to her bed so I can lay down next to her. For now she seems to be comfortable, or at least just sleeping.
As you can tell things are happening rapidly around here. If there are additional updates I may or may not have time to type them into the blog for awhile. Hope these updates are helping you keep up with Rory at this time.
Wednesday, February 5, 2020
Maybe daily for awhile
Maybe these blog posts will move to daily for awhile, with more thorough weekly posts still.
Yesterday afternoon I got the call from oncology that they were able to "squeeze in" a PET/CT scan appointment time for Rory. FOR THE FOLLOWING DAY AT 6:30AM. Some in-laws stopped in for brief visits, and were treated to a little bit of semi-lucidity. It was by far her best part of the day in terms of being awake and able to communicate. I know she really enjoyed having that time.
We're back from that PET/CT now, and she's mostly been sleeping ever since. Her ability to speak is markedly worse than it was yesterday. Oncology has been checking regularly for the radiologist's report, although that might not arrive until tomorrow sometime. Also I found out that her primary oncologist is out of town for a conference this week. All that adds up to "We don't know when we'll know anything more."
Update: the results came back, and I talked to the head nurse in the oncology office. The scans showed "mild increase" in the cancer activity at the known sites, but they insisted that progression shouldn't be the cause of her current physiological and mental symptoms. Their suggestions were:
1) start home hospice
2) return to the ER to get additional testing, including possibly a lumbar puncture (spinal tap)
I assume option 2 is to check spinal fluid for signs of infection or disease.
Based on conversations months ago where Rory said she didn't want her children to watch her decline and suffer for an extended period of time, and given the progression of the disease and lack of positive reaction to the treatments, and a host of other things, we're going ahead with option #1. My sincere hope is that palliative (comfort) care along with no more chemo side effects will give us some good times to spend with her. That's obviously the main reason for making this choice at this time.
Yesterday afternoon I got the call from oncology that they were able to "squeeze in" a PET/CT scan appointment time for Rory. FOR THE FOLLOWING DAY AT 6:30AM. Some in-laws stopped in for brief visits, and were treated to a little bit of semi-lucidity. It was by far her best part of the day in terms of being awake and able to communicate. I know she really enjoyed having that time.
We're back from that PET/CT now, and she's mostly been sleeping ever since. Her ability to speak is markedly worse than it was yesterday. Oncology has been checking regularly for the radiologist's report, although that might not arrive until tomorrow sometime. Also I found out that her primary oncologist is out of town for a conference this week. All that adds up to "We don't know when we'll know anything more."
Update: the results came back, and I talked to the head nurse in the oncology office. The scans showed "mild increase" in the cancer activity at the known sites, but they insisted that progression shouldn't be the cause of her current physiological and mental symptoms. Their suggestions were:
1) start home hospice
2) return to the ER to get additional testing, including possibly a lumbar puncture (spinal tap)
I assume option 2 is to check spinal fluid for signs of infection or disease.
Based on conversations months ago where Rory said she didn't want her children to watch her decline and suffer for an extended period of time, and given the progression of the disease and lack of positive reaction to the treatments, and a host of other things, we're going ahead with option #1. My sincere hope is that palliative (comfort) care along with no more chemo side effects will give us some good times to spend with her. That's obviously the main reason for making this choice at this time.
Tuesday, February 4, 2020
At the Non-Amusement Park
So another change of plans ... during the hospice evaluation meeting last night, Rory was suddenly able to speak enough to participate for a few minutes. We decided to try one more time to make contact with oncology and inquire about moving her PET and CT scans up in the schedule, and use those results to inform a plan forward. I talked with an on-call doctor last night and he agreed that would be the best plan. Heard from the office's lead nurse who is putting things into motion now.
The hospice nurse who did the evaluation said that Rory does seem to be at a level of disease progression that would qualify and warrant hospice in her opinion, but she and all of us agreed that getting this scan could give us some much-needed information and ensure whatever decision is well-grounded and supported by physiological testing and results if possible.
Those of you who were on this "ride" with us eight years ago will recognize the dramatic up-and-down, rollercoaster-like swings of plans, emotions, energy, etc.
Monday, February 3, 2020
In the Storm
I know this isn't a weekly, Sunday update. Things were pretty difficult this morning, enough that I made the decision to inquire about hospice for Rory. The snow is really flying outside right now, so I don't know whether we'll get something put in place today. About mid-morning I got a call from Rory, and she was talking very clearly and normally. At first she was asking whether I could take her to the hospital, as it seems her shaking has been worse than it was yesterday. We talked through that they won't be able to help her, since that was what we went in for on Friday. So then she asked me to call Kevin to set up home hospice. I told her that I had already made that call earlier in the morning. "I'm so glad we're still on the same wavelength"was her comment.
Everyone I've talked to indicates that hospice can usually be set up same-day. However, the referral has to go through Rory's primary care doctor who works in the afternoons. I guess we'll see if her approval comes before her normal working hours, and whether the weather will factor into the timing of things.
Anyway, this was big enough news that it seemed to warrant a new post right away.
Everyone I've talked to indicates that hospice can usually be set up same-day. However, the referral has to go through Rory's primary care doctor who works in the afternoons. I guess we'll see if her approval comes before her normal working hours, and whether the weather will factor into the timing of things.
Anyway, this was big enough news that it seemed to warrant a new post right away.
Sunday, February 2, 2020
The Storm Before the Storm
There weren't many scheduled doctor's appointments this week, which was a nice change. This was also Rory's "Week Off" from chemo, although we've learned that often doesn't mean a reduction in symptoms for her.
Tuesday we got a little bit of a "date night" and used some Red Robin coupons. Rory was actually pretty hungry, and it was good for her to eat an entire meal. Afterwards we attended the musical BRIGHT STAR at Hale Theater. I watched and enjoyed the show, and I think Rory enjoyed the parts for which she was awake. If nothing else, it was great to have her out of the house for awhile, even if she insists she would have been home in bed if we didn't have the play on our plans.
Wednesday she still wasn't feeling much better, but we met with her primary care doctor late in the afternoon. She is really good to listen to Rory and offer input and suggestions where she can, even though most of her actual treatments are beyond her expertise.
For those keeping score, Thursday of this past week was my father's Angiogram. Fortunately there was nothing "exciting" going on at home, so the timing worked out well.
Friday afternoon I got a text message from Rory saying that she was having full-body shakes, severe enough that she dropped a jar of jam in the kitchen. She asked me if it was something worth going to the hospital for. I joked that of course we should go, because when we go it's always on a Friday!. OK, so maybe that joke was in poor taste at the time. Later that evening I got a call from home saying that Rory was having another seizure, similar to the ones from last October. And, similar to last October she seemed mostly OK after the episode passed. Kaeli and Caiden were there, and Kaeli helped put Rory to bed for the evening. We did get a callback from the on-call doctor saying that if Rory had been experiencing seizures all day, that she needed to go to the ER. We decided to wait to see how the next day went.
Saturday I woke Rory up to help with her morning medications, and to make sure she had some breakfast. She was still shaking badly, in large motions compared to her typical seizure twitching. Plus, she was awake enough to talk a little bit, although her speech was very slurred and difficult to understand. I ended up having to feed her toast to her, as she couldn't hold onto it and wouldn't have been able to get the food into her mouth by herself even if she could hold onto it. Repeatedly she asked what day it was ("Saturday"), whether she had slept the day away and was it Sunday ("No, it's Saturday"), was it Sunday ("It's Saturday"). She liked the soup for lunch, but again I had to "drive" the spoon for her. A bit later in the afternoon I was summoned into the bathroom where Kaeli was trying to help Rory walk back to her room. The shaking was so bad, and her body so weak, she couldn't stay up even with the walker. So we (Kaeli and I) made the decision then and there that Rory was going to the ER. Even though she couldn't speak clearly, she was pretty forceful in not wanting to go to the ER. "It's just going to be a waste of money," ("That's what insurance is for") or "We already know what this is," ("This shaking is different") or "I don't want to waste the time or money" ("We're going"). We put clothes on her and worked together to get her out to the car. I dropped her off with Kaeli and then took Colton to work. By the time I got back to the ER they were still in triage, and the admitting doctor couldn't get her to respond verbally at all. We verified her medications, talked about the timeline, discussed her current treatments. After getting moved to a treatment room and helping get her gown on, the regular ER doctor attempted again to get Rory to answer his questions. Once or twice she was able to twitch her mouth when he asked her to smile, or shake her foot when requested to wiggle her toes. But she was completely unable to speak or open her eyes on her own.
He ordered a brain CT and MRI, wanting to verify or rule out a stroke. He also ordered an IV to be inserted, and notified the ultrasound team that they would probably be needed to get that line going. It was almost like a bad comedy show for awhile. The scan technician showed up first to get her imaging done, but then realized the IV hadn't been started yet so she said she'd come back later. A nurse came in to attempt to start an IV, but decided to wait for the ultrasound team. The scan tech came back again and decided they could do the MRI without the IV started, so they took care of that. One of the ultrasound IV techs stopped in but during the time that Rory was gone for the scan. After returning from the MRI, another nurse came in and actually tried to start the IV, but was unsuccessful and decided not to make a second attempt. The scan tech came back again and said they didn't need contrast after all, so she could do the CT without having the IV in place. The doctor stopped in again but while Rory was still out of the room. After returning from the second scan, Rory had a few minutes of clear lucidity and carried on a very normal and animated conversation with the nurse who said she was going to track down the doctor right then so he could get some information from Rory since she was able to verbalize. However, by the time he got to the room Rory had slipped back into her non-verbal mental state.
At the end of all of this, the doctor reported that both brain scans and urine test all came back normal, meaning he had ruled out all the "big" possible problems including stroke. There wasn't anything else he would learn from blood work, so there wasn't a need to continue trying for a line. He also said he wasn't worried about the body shaking, as it was likely stress-induced and there wasn't anything he could really do for her since she is allergic to the family of drugs (like Atavan) that they normally give to control tremors. He was encouraged that she did eventually regain lucidity which further confirmed she hadn't had a stroke, and hopefully would continue to recover her mental abilities. With that, we were sent back home.
More of the same on Sunday, with continued shakes and inability to put together coherent sentences. Our ward did a fast for several of the members of the ward going through various medical issues, and included Tyler (see other write-ups on that situation). After months of Rory enduring various types and levels of pain, I think I'm most grateful that for most of the past several weeks, she hasn't felt much pain at all. From last night I found a note that she had taken a Dilaudid, which I believe was the first in a long time. And by morning she was again reporting no pain at all. After a minor accident Sunday afternoon, she had the energy to have each of he kids come and sit with her in the bedroom to just talk. She was able to verbalize relatively well, and wanted to use that time and energy to spend with her children. I was tasked to send messages and emails to several of her doctors; would it be possible to move her full-body scan up on the schedule? what are the actual steps to take when she's ready for formal hospice? need to report the weekend's new symptoms and get more input.
So all of this weekend is the "storm" before we may finally get walloped with a real snowstorm tomorrow. Kelsianne went to bed with her PJs inside-out, so snow is guaranteed by morning. That might be the only guarantee we have; hang onto those you love while you can!
Tuesday we got a little bit of a "date night" and used some Red Robin coupons. Rory was actually pretty hungry, and it was good for her to eat an entire meal. Afterwards we attended the musical BRIGHT STAR at Hale Theater. I watched and enjoyed the show, and I think Rory enjoyed the parts for which she was awake. If nothing else, it was great to have her out of the house for awhile, even if she insists she would have been home in bed if we didn't have the play on our plans.
Wednesday she still wasn't feeling much better, but we met with her primary care doctor late in the afternoon. She is really good to listen to Rory and offer input and suggestions where she can, even though most of her actual treatments are beyond her expertise.
For those keeping score, Thursday of this past week was my father's Angiogram. Fortunately there was nothing "exciting" going on at home, so the timing worked out well.
Friday afternoon I got a text message from Rory saying that she was having full-body shakes, severe enough that she dropped a jar of jam in the kitchen. She asked me if it was something worth going to the hospital for. I joked that of course we should go, because when we go it's always on a Friday!. OK, so maybe that joke was in poor taste at the time. Later that evening I got a call from home saying that Rory was having another seizure, similar to the ones from last October. And, similar to last October she seemed mostly OK after the episode passed. Kaeli and Caiden were there, and Kaeli helped put Rory to bed for the evening. We did get a callback from the on-call doctor saying that if Rory had been experiencing seizures all day, that she needed to go to the ER. We decided to wait to see how the next day went.
Saturday I woke Rory up to help with her morning medications, and to make sure she had some breakfast. She was still shaking badly, in large motions compared to her typical seizure twitching. Plus, she was awake enough to talk a little bit, although her speech was very slurred and difficult to understand. I ended up having to feed her toast to her, as she couldn't hold onto it and wouldn't have been able to get the food into her mouth by herself even if she could hold onto it. Repeatedly she asked what day it was ("Saturday"), whether she had slept the day away and was it Sunday ("No, it's Saturday"), was it Sunday ("It's Saturday"). She liked the soup for lunch, but again I had to "drive" the spoon for her. A bit later in the afternoon I was summoned into the bathroom where Kaeli was trying to help Rory walk back to her room. The shaking was so bad, and her body so weak, she couldn't stay up even with the walker. So we (Kaeli and I) made the decision then and there that Rory was going to the ER. Even though she couldn't speak clearly, she was pretty forceful in not wanting to go to the ER. "It's just going to be a waste of money," ("That's what insurance is for") or "We already know what this is," ("This shaking is different") or "I don't want to waste the time or money" ("We're going"). We put clothes on her and worked together to get her out to the car. I dropped her off with Kaeli and then took Colton to work. By the time I got back to the ER they were still in triage, and the admitting doctor couldn't get her to respond verbally at all. We verified her medications, talked about the timeline, discussed her current treatments. After getting moved to a treatment room and helping get her gown on, the regular ER doctor attempted again to get Rory to answer his questions. Once or twice she was able to twitch her mouth when he asked her to smile, or shake her foot when requested to wiggle her toes. But she was completely unable to speak or open her eyes on her own.
He ordered a brain CT and MRI, wanting to verify or rule out a stroke. He also ordered an IV to be inserted, and notified the ultrasound team that they would probably be needed to get that line going. It was almost like a bad comedy show for awhile. The scan technician showed up first to get her imaging done, but then realized the IV hadn't been started yet so she said she'd come back later. A nurse came in to attempt to start an IV, but decided to wait for the ultrasound team. The scan tech came back again and decided they could do the MRI without the IV started, so they took care of that. One of the ultrasound IV techs stopped in but during the time that Rory was gone for the scan. After returning from the MRI, another nurse came in and actually tried to start the IV, but was unsuccessful and decided not to make a second attempt. The scan tech came back again and said they didn't need contrast after all, so she could do the CT without having the IV in place. The doctor stopped in again but while Rory was still out of the room. After returning from the second scan, Rory had a few minutes of clear lucidity and carried on a very normal and animated conversation with the nurse who said she was going to track down the doctor right then so he could get some information from Rory since she was able to verbalize. However, by the time he got to the room Rory had slipped back into her non-verbal mental state.
At the end of all of this, the doctor reported that both brain scans and urine test all came back normal, meaning he had ruled out all the "big" possible problems including stroke. There wasn't anything else he would learn from blood work, so there wasn't a need to continue trying for a line. He also said he wasn't worried about the body shaking, as it was likely stress-induced and there wasn't anything he could really do for her since she is allergic to the family of drugs (like Atavan) that they normally give to control tremors. He was encouraged that she did eventually regain lucidity which further confirmed she hadn't had a stroke, and hopefully would continue to recover her mental abilities. With that, we were sent back home.
More of the same on Sunday, with continued shakes and inability to put together coherent sentences. Our ward did a fast for several of the members of the ward going through various medical issues, and included Tyler (see other write-ups on that situation). After months of Rory enduring various types and levels of pain, I think I'm most grateful that for most of the past several weeks, she hasn't felt much pain at all. From last night I found a note that she had taken a Dilaudid, which I believe was the first in a long time. And by morning she was again reporting no pain at all. After a minor accident Sunday afternoon, she had the energy to have each of he kids come and sit with her in the bedroom to just talk. She was able to verbalize relatively well, and wanted to use that time and energy to spend with her children. I was tasked to send messages and emails to several of her doctors; would it be possible to move her full-body scan up on the schedule? what are the actual steps to take when she's ready for formal hospice? need to report the weekend's new symptoms and get more input.
So all of this weekend is the "storm" before we may finally get walloped with a real snowstorm tomorrow. Kelsianne went to bed with her PJs inside-out, so snow is guaranteed by morning. That might be the only guarantee we have; hang onto those you love while you can!
Sunday, January 26, 2020
They are called "tweaks"
A couple from the ward came for a short visit on Sunday night last week. He's had cancer a couple of times and helps facilitate support groups, so it was good to talk with someone who really KNOWS what Rory and I are going through. Very well-meaning people often say they are willing to help, are hoping and praying for the best. All of that is very much appreciated, while at the same time it's different to talk with someone who has lived through, or is currently living through, the same thing.
Rory's trial of not using Metformin continued this week. The doctor prefers for her to not be on that medication, but only if the nausea remains under control. Although her blood glucose numbers went up, the fact that she didn't experience nausea was exciting for the doctor! So, we'll be re-tweaking her insulin again to find the right balance, now that Metformin is out of the rotation. We also dropped Glipizde at his instruction.
Tuesday was Rory's next oncology appointment. It was good that we had blood results to use during that appointment, and having those tests already completed will become our regular approach for future appointments. Regarding those 300-level results, the doctor said he was not alarmed. In fact, because they have been at 300-ish for several tests in a row, he said that's enough evidence that the chemo is functioning that he wants to remain on the essentially the same dosage and schedule. As some symptoms towards the end of Week 2 (which this one was) sometimes get more difficult, she has the OK to reduce the daily amount from 6 pills to 5 on a day-to-day basis. However, we haven't found that her symptoms have reduced during her entire WEEK OFF, so we're not so sure that dropping one pill for a few days will make a noticeable difference. We'll just have to wait and see on that.
We did try to have the discussion about the extremes of making a decision to drop chemo altogether or moving to a new drug. He agreed that dropping chemo completely would likely mean life expectancy measured in weeks, but without any of the chemo side effects. The other extreme would be moving to another completely new chemo, and he thought the next candidate would be administered via IV again. However, unlike the very first round 8 years ago, this one would be given once every week or maybe even every-other week, and the "typical" side effects might actually be less severe than what she's going through now. If that's truly the case, then it seems the drug must be less effective than her current regimen; otherwise, that's what she would be on right now. Also, because of her blood thinners they would probably have to surgically install a port again rather than trying to do a traditional IV each time. Those two powerful and consequential extremes are additional arguments for staying on the current treatment plan for now.
In later conversations, Rory eventually told me that she's OK with her current quality time each week. Even though she's sleeping and in bed most of the day on most days of the week, the fact that she can attend periodic events is enough for her right now. Wednesday night we attended Fiddler on the Roof, and Friday she came to a gymnastics meet. That was all she could do this week, but for now that level of quality time is enough for her to continue with the current treatment plan.
Friday we met with the social worker again, specifically to continue conversations with the kids. They had written down some questions and some "wish list" items that he wanted to go over. It was a good conversation, eventually coming around to the difficult questions of remaining time, and how best to prepare. Since each of the kids seems to want to know different levels of detail, and has their own questions, he's planning to meet with each of the kids individually next time.
I think that's about it for this week. We'll keep tweaking, monitoring, and doing the best we can. Thanks to everyone for checking in on her and us!
Rory's trial of not using Metformin continued this week. The doctor prefers for her to not be on that medication, but only if the nausea remains under control. Although her blood glucose numbers went up, the fact that she didn't experience nausea was exciting for the doctor! So, we'll be re-tweaking her insulin again to find the right balance, now that Metformin is out of the rotation. We also dropped Glipizde at his instruction.
Tuesday was Rory's next oncology appointment. It was good that we had blood results to use during that appointment, and having those tests already completed will become our regular approach for future appointments. Regarding those 300-level results, the doctor said he was not alarmed. In fact, because they have been at 300-ish for several tests in a row, he said that's enough evidence that the chemo is functioning that he wants to remain on the essentially the same dosage and schedule. As some symptoms towards the end of Week 2 (which this one was) sometimes get more difficult, she has the OK to reduce the daily amount from 6 pills to 5 on a day-to-day basis. However, we haven't found that her symptoms have reduced during her entire WEEK OFF, so we're not so sure that dropping one pill for a few days will make a noticeable difference. We'll just have to wait and see on that.
We did try to have the discussion about the extremes of making a decision to drop chemo altogether or moving to a new drug. He agreed that dropping chemo completely would likely mean life expectancy measured in weeks, but without any of the chemo side effects. The other extreme would be moving to another completely new chemo, and he thought the next candidate would be administered via IV again. However, unlike the very first round 8 years ago, this one would be given once every week or maybe even every-other week, and the "typical" side effects might actually be less severe than what she's going through now. If that's truly the case, then it seems the drug must be less effective than her current regimen; otherwise, that's what she would be on right now. Also, because of her blood thinners they would probably have to surgically install a port again rather than trying to do a traditional IV each time. Those two powerful and consequential extremes are additional arguments for staying on the current treatment plan for now.
In later conversations, Rory eventually told me that she's OK with her current quality time each week. Even though she's sleeping and in bed most of the day on most days of the week, the fact that she can attend periodic events is enough for her right now. Wednesday night we attended Fiddler on the Roof, and Friday she came to a gymnastics meet. That was all she could do this week, but for now that level of quality time is enough for her to continue with the current treatment plan.
Friday we met with the social worker again, specifically to continue conversations with the kids. They had written down some questions and some "wish list" items that he wanted to go over. It was a good conversation, eventually coming around to the difficult questions of remaining time, and how best to prepare. Since each of the kids seems to want to know different levels of detail, and has their own questions, he's planning to meet with each of the kids individually next time.
I think that's about it for this week. We'll keep tweaking, monitoring, and doing the best we can. Thanks to everyone for checking in on her and us!
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