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 ...