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!
Sunday, January 26, 2020
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 ...
Sunday, January 12, 2020
Go, Go, Go!
This was Rory's WEEK OFF from chemo.
Monday we met with Dr. Lash again, the counselor in Rory's primary care office. Honestly I'm not entirely sure how helpful those sessions are, but I think Rory benefits from just having someone else to talk with about everything going on. I did mention that each night when I come to bed and each morning as I wake up, I find myself checking to see if Rory is breathing. The few test results we have, coupled with her continuing pain and fatigue, has me constantly wondering about how much longer we'll have Rory with us. Besides wishing we could wish away the disease, I also wish we had some idea about her timeline going forward.
Tuesday Rory was talked into going to the mall with Kaeli and Kelsianne. This was one of those events that she really didn't feel good enough to attend, but decided the discomfort was more than worth it to spend that time with her girls. They window shopped, ACTUAL shopped, got treats, and it sounds like had a good time. That night Rory again decided to de-prioritize her fatigue and instead prioritize attending a dinner with other moms of Colton's Special Needs Basketball team members. I didn't get much detail about that dinner, other than she was glad she made the effort to attend. And she brought home some great Olive Garden leftovers!
Thursday continued the busy medical appointment schedule with a psychiatrist check-in. Seemingly the only thing useful from these sessions is that Rory's prescriptions get refilled. These are the meds that help with sleep, suppress nightmares, and help with overall mood. She's been on the same dosage of most of those for so long, that it seems like the prescriptions could simply be renewed over the phone. I suppose it's a billing thing, and probably a good idea to check in face-to-face occasionally at least.
On Friday Rory still wasn't feeling good at all, but that night was my company's holiday dinner and reveal retreat. Some people jokingly refer to Bowen Collins & Associates as a "bi-annual vacation club" because the company takes all their employees and one family member each on a week-long vacation trip every-other year. The event was held in a room overlooking the light show at the gardens of Thanksgiving Point. After a very nice buffet dinner, handing out employee gifts, and a short introduction from our company President, the 2020 vacation location was finally revealed: a week-long cruise to the Caribbean! Because Rory was pretty worn out by that time, we headed home immediately after that announcement.
One of the "homework assignments" from one of the counselors was for the kids to come up with a list of activities that they want to do either with Rory, or as a family. Kaeli checked off one of her items by organizing a family bowling trip for Saturday. Although she didn't bowl, Rory was with us and took lots of pictures. I came to the jarring realization that I can ONLY JUST BARELY still beat my kids at bowling. We got the family special that included pizza, breadsticks and drinks. The activity was so fun that both Kelsianne and Colton were talking about that doing that same event for their upcoming birthdays.
It wasn't entirely clear to me how much relief Rory had from her symptoms and fatigue due to being off of chemo this week, mostly because the week was so full of appointments and events that would have worn her out anyway. It was nice to have time together, though.
Monday we met with Dr. Lash again, the counselor in Rory's primary care office. Honestly I'm not entirely sure how helpful those sessions are, but I think Rory benefits from just having someone else to talk with about everything going on. I did mention that each night when I come to bed and each morning as I wake up, I find myself checking to see if Rory is breathing. The few test results we have, coupled with her continuing pain and fatigue, has me constantly wondering about how much longer we'll have Rory with us. Besides wishing we could wish away the disease, I also wish we had some idea about her timeline going forward.
Tuesday Rory was talked into going to the mall with Kaeli and Kelsianne. This was one of those events that she really didn't feel good enough to attend, but decided the discomfort was more than worth it to spend that time with her girls. They window shopped, ACTUAL shopped, got treats, and it sounds like had a good time. That night Rory again decided to de-prioritize her fatigue and instead prioritize attending a dinner with other moms of Colton's Special Needs Basketball team members. I didn't get much detail about that dinner, other than she was glad she made the effort to attend. And she brought home some great Olive Garden leftovers!
Thursday continued the busy medical appointment schedule with a psychiatrist check-in. Seemingly the only thing useful from these sessions is that Rory's prescriptions get refilled. These are the meds that help with sleep, suppress nightmares, and help with overall mood. She's been on the same dosage of most of those for so long, that it seems like the prescriptions could simply be renewed over the phone. I suppose it's a billing thing, and probably a good idea to check in face-to-face occasionally at least.
On Friday Rory still wasn't feeling good at all, but that night was my company's holiday dinner and reveal retreat. Some people jokingly refer to Bowen Collins & Associates as a "bi-annual vacation club" because the company takes all their employees and one family member each on a week-long vacation trip every-other year. The event was held in a room overlooking the light show at the gardens of Thanksgiving Point. After a very nice buffet dinner, handing out employee gifts, and a short introduction from our company President, the 2020 vacation location was finally revealed: a week-long cruise to the Caribbean! Because Rory was pretty worn out by that time, we headed home immediately after that announcement.
One of the "homework assignments" from one of the counselors was for the kids to come up with a list of activities that they want to do either with Rory, or as a family. Kaeli checked off one of her items by organizing a family bowling trip for Saturday. Although she didn't bowl, Rory was with us and took lots of pictures. I came to the jarring realization that I can ONLY JUST BARELY still beat my kids at bowling. We got the family special that included pizza, breadsticks and drinks. The activity was so fun that both Kelsianne and Colton were talking about that doing that same event for their upcoming birthdays.
It wasn't entirely clear to me how much relief Rory had from her symptoms and fatigue due to being off of chemo this week, mostly because the week was so full of appointments and events that would have worn her out anyway. It was nice to have time together, though.
Sunday, January 5, 2020
Some calm
What? A week with no medical appointments? Well, almost.
Monday night a few of us went to a Grizzlies hockey game. After the last time I took the kids, Rory mentioned that she would like to go to a game, too. So we took advantage of Colton being scheduled to work, and this time our 4-ticket book included Rory. Afterwards she admitted that she didn't really know what was going on (at all) during the game, but it was good to be out. Moving slow is good, right? At least there's movement? :)
Most of the rest of the week found Rory resting in bed. I presume that Week 2 was the main driver behind the fatigue, so once again we all hope that next week (no chemo) includes higher energy levels.
Friday morning the palliative care social worker came and led a little discussion session with all of us, including the kids. Keep hoping that these "prompts" will eventually lead to questions and emotional processing and all of that. It was a good discussion, but it seemed like we still walked away with "When you have questions, the door is open" as the main summary. The kids did get an assignment to come up with a list of activities they want to do with Rory, either 1-on-1 or as a family.
That really was pretty much it for this week. The following one more than makes up for the lack of appointments this past week, plus dad is having surgery. I'm guessing all of us will be tired by the end of it all!
Monday night a few of us went to a Grizzlies hockey game. After the last time I took the kids, Rory mentioned that she would like to go to a game, too. So we took advantage of Colton being scheduled to work, and this time our 4-ticket book included Rory. Afterwards she admitted that she didn't really know what was going on (at all) during the game, but it was good to be out. Moving slow is good, right? At least there's movement? :)
Most of the rest of the week found Rory resting in bed. I presume that Week 2 was the main driver behind the fatigue, so once again we all hope that next week (no chemo) includes higher energy levels.
Friday morning the palliative care social worker came and led a little discussion session with all of us, including the kids. Keep hoping that these "prompts" will eventually lead to questions and emotional processing and all of that. It was a good discussion, but it seemed like we still walked away with "When you have questions, the door is open" as the main summary. The kids did get an assignment to come up with a list of activities they want to do with Rory, either 1-on-1 or as a family.
That really was pretty much it for this week. The following one more than makes up for the lack of appointments this past week, plus dad is having surgery. I'm guessing all of us will be tired by the end of it all!
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