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.

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.

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!

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!

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 ...

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.

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!