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.
Sunday, February 9, 2020
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!
Sunday, January 19, 2020
Deep breaths
Monday we had a long meeting with Kevin, the Palliative Care Nurse Practitioner. We handed off the kids' lists of things they want to do with mom and their questions about her condition that Wu had requested, but he was sick and not in attendance. In the course of the meeting, Rory talked about her frustration at having to increase the pain medication dosage; she wants that go to DOWN, not UP! Kevin was very frank that her body is going to need pain medications for the rest of her life, and the way everything is going she is definitely going to need more over time, not less. He said some of his patients are taking more than double Rory's current dose, so it's not a "problem" to increase as needed to control pain. The "problem" is deciding to live with pain thinking that somehow the meds are eventually going away. Kevin also reviewed some of our estate documents, and thought the wills and directives were still perfectly fine. We talked about the POLST form, which gives Rory a chance to direct EMT and doctors what she does or does not want them to do if she's found unresponsive at home or at the hospital. It answer the three questions: 1) Yes/No I want CPR; 2) I want Partial/No measures taken to keep me alive if I'm in a coma-like state; 3) Yes/No I want a feeding tube. In the absence of having the form, EMT will perform CPR, the patient will be admitted to Intensive Car and all measures taken to sustain life, and a feeding tube will be placed. If someone doesn't want those default decisions made, they can fill out the POLST form with other wishes. For now, Rory is going with the defaults (not filling out the form). We had more conversations about QUALITY or QUANTITY of life measures. I pressed Kevin to help us with likely timelines for Rory based on his experience. Nobody really wants to give that kind of information, as they obviously don't have a crystal ball and don't want to provide false hope or impose false despair. Even with those caveats, he eventually said that based on her current condition and the disease and symptom progression he's seen since starting to work with Rory, he suspects that if the chemotherapy were completely dropped she would probably have on the order of a month. The trade-off would be, that month would be free from the symptoms caused by the chemo, and possibly would give her that QUALITY even if it's for a shorter period of time. Right now the quality is not present, as most of her days are mostly or entirely spent in bed. We meet with the Oncologist again next Tuesday, and plan to ask him what Rory's life would "look like" if chemotherapy were stopped; what would be the expected changes in symptoms, as well as what would HIS projection be in terms of life expectancy. Then, what would her life "look like" if the next change is made (since the current therapy doesn't seem to be having the beneficial effects, and she is not truly living life at the moment, it's likely time to make the next change) meaning a continuation of current quality levels, or an even further degradation due to increased dosage or change to a new medication? Kevin certainly left us with a lot to think about.
Tuesday was Rory's regular check-in with the doctor monitoring her diabetes. As always, he was very positive and congratulatory about everything she's doing, monitoring, and reporting. Her A1C number (not really sure what that is, actually) was lower than last time, and below their target number. We had a long-ish discussion about her blood sugar levels, and since she has been sleeping so much and feeling "groggy" much of the time, he said he was completely fine with raising her target range. While being in the low 100s would be stellar, if her energy is low or if she's just not feeling well (which honestly, is almost never), then she is completely fine to adjust her food intake to allow higher numbers, with the goal to stay in the 100s. if she consistently has numbers above 200, then we will adjust course again. He also wants her to do a test week without Metformin, as that could increase her nausea. We will take 4 days of half dose, then a week without it. We expect this change will push her blood sugar numbers up (the med was started to help lower then numbers), but if there is a positive effect with regards to nausea, the it is worth the trade-off. Sine she had a few numbers lower than 100, if she has any more then we will cut out Glipizide.
We worked most of the week to get a lab appointment for Rory to have her blood work and cancer antigen tested in time to have results ready for next week’s oncology appointment. In the past they have done her blood draw immediately before her appointment, which was convenient in terms os not needing a separate excursion, but it meant we didn’t have actual results to discuss with the doctor. Instead, we typically talked in hypotheticals and created two plans based on what the blood numbers would tell us when available a few days later. This time, the agreed to a special order nd her draw was completed on Thursday so we have actual results for next Tuesday.
There weren’t any other medical appointments for the week, but we did have some family events. Friday we took everyone to see Seussical at Hale Theater. Per tradition, we went to dinner first, and HuHot Mongolian Grill was selected. I definitely did not get my money’s worth from the two younger boys, as they didn’t even finish one plate. But, the new experience was still worth it I think. Rory said that everything has been tasting bad again, bu that dinner was ok for her. The musical was amazing, with great music, funny lines, aerial acrobatics, and amazing effects. We sat on row 1 which meant extra stairs to be walked, but Rory really enjoyed the night out with everyone.
Saturday was a long-awaited day with Rory’s Miller Family cousins. They are keeping their grandmother’s tradition going of wither candy making. This year all the girl cousins in Kaeli and Kelsianne’s generation were also invited, and got their own TOP SECRET recipe and instruction book. They brought home a LOT of hand-dipped candies. Rory’s quote after getting home: “I hurt so bad, but it was SOOOO worth it!”
Late Saturday I logged into Rory’s medical account and found the current cancer antigen numbers. Recall that “normal” numbers are below 30. When her numbers spiked to over 600, that caused the change to he new chemo med. the doctor’s goal was to see those numbers back below 100. After one 3-week cycle the results were around 300, so there was hope that the med could work over time. The following cycle we were disappointed that the numbers were STILL at 300. For some reason they didn’t do the test last cycle, so this cycle’s results have been a worry to me. Sad to say that her current numbers are yet again at 300. What this means for our Tuesday appointment will obviously be impactful on immediate and longer term decisions. Check back next week ...
Tuesday was Rory's regular check-in with the doctor monitoring her diabetes. As always, he was very positive and congratulatory about everything she's doing, monitoring, and reporting. Her A1C number (not really sure what that is, actually) was lower than last time, and below their target number. We had a long-ish discussion about her blood sugar levels, and since she has been sleeping so much and feeling "groggy" much of the time, he said he was completely fine with raising her target range. While being in the low 100s would be stellar, if her energy is low or if she's just not feeling well (which honestly, is almost never), then she is completely fine to adjust her food intake to allow higher numbers, with the goal to stay in the 100s. if she consistently has numbers above 200, then we will adjust course again. He also wants her to do a test week without Metformin, as that could increase her nausea. We will take 4 days of half dose, then a week without it. We expect this change will push her blood sugar numbers up (the med was started to help lower then numbers), but if there is a positive effect with regards to nausea, the it is worth the trade-off. Sine she had a few numbers lower than 100, if she has any more then we will cut out Glipizide.
We worked most of the week to get a lab appointment for Rory to have her blood work and cancer antigen tested in time to have results ready for next week’s oncology appointment. In the past they have done her blood draw immediately before her appointment, which was convenient in terms os not needing a separate excursion, but it meant we didn’t have actual results to discuss with the doctor. Instead, we typically talked in hypotheticals and created two plans based on what the blood numbers would tell us when available a few days later. This time, the agreed to a special order nd her draw was completed on Thursday so we have actual results for next Tuesday.
There weren’t any other medical appointments for the week, but we did have some family events. Friday we took everyone to see Seussical at Hale Theater. Per tradition, we went to dinner first, and HuHot Mongolian Grill was selected. I definitely did not get my money’s worth from the two younger boys, as they didn’t even finish one plate. But, the new experience was still worth it I think. Rory said that everything has been tasting bad again, bu that dinner was ok for her. The musical was amazing, with great music, funny lines, aerial acrobatics, and amazing effects. We sat on row 1 which meant extra stairs to be walked, but Rory really enjoyed the night out with everyone.
Saturday was a long-awaited day with Rory’s Miller Family cousins. They are keeping their grandmother’s tradition going of wither candy making. This year all the girl cousins in Kaeli and Kelsianne’s generation were also invited, and got their own TOP SECRET recipe and instruction book. They brought home a LOT of hand-dipped candies. Rory’s quote after getting home: “I hurt so bad, but it was SOOOO worth it!”
Late Saturday I logged into Rory’s medical account and found the current cancer antigen numbers. Recall that “normal” numbers are below 30. When her numbers spiked to over 600, that caused the change to he new chemo med. the doctor’s goal was to see those numbers back below 100. After one 3-week cycle the results were around 300, so there was hope that the med could work over time. The following cycle we were disappointed that the numbers were STILL at 300. For some reason they didn’t do the test last cycle, so this cycle’s results have been a worry to me. Sad to say that her current numbers are yet again at 300. What this means for our Tuesday appointment will obviously be impactful on immediate and longer term decisions. Check back next week ...
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