General Update #319 - Thursday, February 25, 2021

7:55 a.m. - Dusty arrived to farmhouse. Craig already on-site, reported that Joyce told him that she woke ~5 a.m. and took herself to the bathroom at that time. Joyce awake in her recliner without oxygen line in place, visiting with Craig.

8 a.m. - BP 160/99, pulse 84. BGL @ 135.

8:06 a.m. - Bathroom trip. Urinary incontinence. Early bladder release. Remainder of urine passed. Bathroom sanitized. Joyce's shoes sanitized. Joyce showered. High amount of flatus passed by Joyce in shower while bathing and drying. Joyce declined needing to use toilet. 

Weight 159.4 lbs.

PT walk to living room, Joyce returned to recliner by 8:48 a.m.

8:52 a.m. - Morning medication administered with nutritional shake.

8:59 a.m. - Breakfast (donut, whole banana, Baby Bell cheese wheel, glass of apple peach mango juice). Finished by 9:49 a.m.

9:49 a.m. - Rush to bathroom. Urinary incontinence - remainder of urine and Type 5/Type 6 bowel movement passed. Diaper pad replaced. PT walk to living room, returning to recliner by 10:22 a.m.

11:59 a.m. - Bathroom trip. Urinary incontinence. Early bladder release. Remainder of urine passed. Diaper and diaper pad insert replaced. Bathroom sanitized.

Loaded into Subaru for trip to Lewiston with Craig's assistance.

During drive to Lewiston Joyce frequently asked where they were going (to the cancer center), why it was happening (follow up appointment), and why it had to be today (because it was setup months ago).  

1 p.m. - Appointment at St. Joseph Regional Cancer and Blood Center (arrived 1 hour early). Joyce checked in and vitals collected. Joyce's blood pressure was taken twice to verify initial "very high" reading was in error (Dusty explained that Joyce holds her breath and breathes shallow when exerting herself - like getting into/out of Subaru). Second reading was "okay."

Tamra (nurse) collected Joyce's vitals again and worked with Dusty to update Joyce's medication list (previous data was from June-August 2020 when Joyce was still at Aspen Park). Tamara noted "quite a bit of weight loss" since Joyce was in Aspen Park's care. June 2020 injuries from falling down the basement stairs were reviewed. Confirmed no new falls or hospitalizations for Joyce. 

Dusty completed paperwork for 2021 (information/records permissions for Craig, Carol, Connie, Jess, Dusty; telehealth conference permissions; etc.) throughout visit.

Updated Joyce's allergies list to include Angiotensin-converting enzyme (ACE) inhibitors. 

Joyce declined speaking with a dietician. If family wants to visit with dietician about Joyce's meal planning, that can be arranged.

Tamra departed. Michele Dickison (nurse practitioner) who has been working with Joyce since 2016, arrived soon afterward. Michele asked for and received update on Joyce since they spoke via telehealth conference in summer 2020 when Joyce was still in Aspen Park's care. Michele gave praise to family caregivers for being so devoted to Joyce's care. Michele informed Joyce and Dusty that the new nurse practitioner on the team, Rebecca Amador, would be taking the lead for Joyce today and arrive into the exam room to review Joyce's CT scan and lab results. Michele confirmed to Joyce that she was still cancer free so Joyce didn't "have to sit and worry."  

Rebecca Amador (nurse practitioner) arrived to review lab and CT scan results with Joyce. Michele departed. Rebecca conformed that she was working very closely with Michele on Joyce's case file and that they had reviewed everything (2016 to present) together.

Rebecca confirmed that the CT scan and lab work showed that there were no cancer-related problems with Joyce. Joyce was elated. Joyce soon shifted back to asking "why are we here today?" then reverted back to knowing why they were present.

Joyce's dementia and overall functionality in day to day living was reviewed. Family care provider schedule and Joyce health log reviewed. Family care givers praised for support given to Joyce in keeping her at the farmhouse and maintaining her everyday life and comfort.

Joyce expressed concerns about food she was being fed at meals when asked by Rebecca, but informed Rebecca that it was better than the food she was getting "at the other places."

CT scans were reviewed - scans of the chest, abdomen, and pelvis were "really good." Atherosclerosis was noted as being present. T9 fracture noted and appearing okay. All lymph nodes were normal. Kidneys are stable and normal from cryoablation treatments. Colon cancer is non-existent. No new cancer markers detected by the lab work (CEA @ 2.9, which is normal). Kidney and liver functions (enzyme markers) all normal. 

Joyce to be taken off of iron supplement - Cancer and Blood Center team put her onto that in 2016 when they believed she was anemic. Lab tests show her iron levels high and so plan will be to trial Joyce without iron supplement over next 6 months until next lab test and see how she does. If her iron levels fall again during that period, Joyce will be restarted on iron supplement. When Joyce was first brought in for treatment in 2016 her hemoglobin levels were 4.5 (levels less than 12 in women are considered low - Joyce was very low).

Joyce's bowels and lungs were checked by Rebecca with a stethoscope. Bowels sounded good and were "talking" as they should. Joyce noted to be breathing shallowly, family care providers recommended to consider working with Joyce on breathing exercises. Dusty suggested that the family could possibly look into obtaining an incentive spirometer to help Joyce breathe more deeply and fully (she had one at one point but hated it and threw it away when no one was available to stop her). 

Bowel and urinary incontinence reviewed. Bowel and urine output logs reviewed. 

Joyce's mouth and hands were inspected by Rebecca. Rebecca asked about Joyce's dentition - expressed concern about the state of her teeth and if it was affecting Joyce's ability to eat. Joyce stated that her lower jaw was not in pain and that she was thinking that "if the crops were good this fall, she would pay to have her teeth pulled and get better dentures." Rebecca asked Dusty about Joyce's appetite and eating habits - health log reviewed and information from Kindred shared (feed Joyce what she will eat, blood glucose levels appear stable and diabetes not an issue at the moment due to Joyce's weight loss and controlled meals). 

Joyce asked Rebecca what she has now (seemingly forgetting being told she was cancer free). Rebecca clarified and Joyce asked "what was wrong with [her] now and what did [she] need to do" as far as Rebecca was concerned. Rebecca recommended Joyce work on her breathing exercises to promote deep breathing and reduce chances of respiratory issues developing. 

Rebecca confirmed that there will be a follow up in 6 months for Joyce. This can be conducted live at the Cancer and Blood Center or it can be done via telehealth conference (over the phone). Rebecca recommends live at the Cancer and Blood Center if the family is comfortable with that as it allows them to collect better data on Joyce.

Family care givers recommended to be on the look out for prolonged periods of nausea, instances of vomiting, or blood appearing in Joyce's stool (anything gastrointestinal related). 

Rebecca confirming that the planned colonoscopy procedure for this year will be canceled as she thinks that with Joyce's current mental and physical state it might do more harm than good at this point. The lab and CT results have Rebecca and Michelle feeling confident that the colonoscopy can be put off until 2022 (when Joyce will either have further deteriorated or improved) to prevent putting Joyce through un-needed trauma and family caregivers difficulty in trying to work with Joyce to prep for the procedure. In 2022, family and Regional Cancer and Blood Center team can review Joyce's annual CT scan and lab work and a new decision can be made again at that time to give her a colonoscopy in 2022 or to further delay it. As Joyce's colon cancer was in 2016, postponing colonoscopy until 2022 makes sense as that will be 5 years out from conclusion of colon cancer treatment and kidney cancer cryoablations. 

Joyce had no further questions for Rebecca.

Rebecca confirmed that if Joyce's family members have any questions they can contact her or Michele. Rebecca provided Dusty with her and Michele's business cards and confirmed individuals (Craig, Carol, Connie, Jess, Dusty) who have been set to have access to Joyce's medical information stored at the Cancer and Blood Center.

Cancer and Blood Center will contact Dusty to arrange next CT scan, lab work, and visit to Lewiston office in 6 months. If Joyce is cancer free at that time as well, Joyce will be switched to yearly tests and trips.

Joyce returned to farmhouse by 3:20 p.m.

3:24 p.m. - Bathroom trip. Urinary incontinence. Diaper and pad replaced. Remainder of urine passed. PT walk to living room, returning to recliner by 3:30 p.m.

Craig arrived to visit.

3:38 p.m. - Lunch (soft taco, ranch dressing, stuffed mexi-fries). Finished ~4:45 p.m.

Bathroom trip declined.

Connie arrived ~4:15 p.m., departing ~ 6 p.m.

Joyce complained about being "too awake" and not being able to settle down to nap - Joyce napped off and on anyway through the early evening hours.

6:30 p.m. - Bathroom trip declined.

7 p.m. - Bathroom trip declined. Joyce returned to napping.

7:30 p.m. - Dinner declined. Bathroom trip declined.

8:08 p.m. - Connie arrived to farmhouse to work on finalizing Joyce's taxes. Joyce asked to review taxes Connie prepared. 

8:18 p.m. - Bathroom trip. Urinary incontinence. Diaper pad replaced. Remainder of urine passed. Joyce initially gasped/hyperventilated and made pained noises before beginning to pass urine. Dusty asked if she was in pain (feeling stinging or burning sensation from passing urine). Joyce stated that the urine "wanted to come out but then didn't, then it did." Urine passed. Joyce requested to remain on the toilet to ensure it all had passed. Joyce kept falling asleep on toilet. Dusty kept her awake. PT walk declined, citing "painful bottom." Joyce returned to her recliner by 8:36 p.m.

Dinner declined.

Connie departed ~8:50 p.m.

9 p.m. - Dinner declined.

9:28 p.m. - Evening medication with nutritional shake. Joyce suspicious of medication being administered, stated that "a patient ought to know what the nursing staff is giving them." 

9:30 p.m. - Dinner (leftover spaghetti). 

Joyce informed Dusty that she felt yesterday was a very confusing day. She said that she didn't have breakfast and that she didn't have anything to eat during the noon hour "so it all ended up being...that's what made [my] brain think 'hey you should eat now' when it should not have been thinking that." 

Dinner finished by 9:50 p.m. - Joyce becoming sassy and not following verbal instructions. 

Bathroom trip declined. Joyce informed Dusty she "will take [herself] when she feels like taking [herself.]"

9:58 p.m. - Joyce changed her mind about bathroom trip as Dusty was packing up and hustled into bathroom. Urine passed. PT walk declined. Returned to recliner by 10:06 p.m. after having to coach her how to use walker correctly.

Wool socks removed. Joyce setup to sleep with legs elevated.  

Dusty departed farmhouse ~10:15 p.m.

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Joyce had high praise for electric blanket that was given to her for Christmas. It worked great in the Subaru today.

Dusty removed iron supplements from Joyce's morning medication and stowed remaining pills into old medication cupboard.

Joyce woke from napping ~7:10 p.m. and reported to Dusty that she had bad nightmares "the night before last" about dogs out in her yard, barking, and that they were scary dogs. Joyce realized that it was a nightmare "later on" but was quite concerned for a long while. Joyce has always had a fear of larger dogs and Dusty suggested that seeing the new neighbor's dog running around and having it come up to the patio door frequently and bark there for several minutes at a time off and on might've caused her some concern. Joyce said it was not that labradoodle.