Harpist was so peaceful

I've tested this link, and it worked for me.  Hopefully it works for you, across all platforms:
facebook.com/julie.jackson.750

Harpist in the "early 11:00 hour"

Other than "early in the 11 o'clock hour," I don't have a specific time when I will start streaming the harpist. With setup, I imagine it won't be before 11:15. But it will be available on Facebook for later viewing (I will tag Mom, so if you're friends on FB, you should be able to find it).

#ThankGodForRampInGarage especially with the front sidewalk all torn up.

Harpist tomorrow

Tomorrow the hospice harpist will play for Mom. I will livestream on Facebook, which will save it for future viewing.

Last night I called for a hospice nurse to come out to the house. Late. Close to midnight. She just seemed to be fading fast. She had stopped requesting water that morning. She was on the second or third day of not being able to really converse. And her eye was no longer focusing on anything. Nurse Juanita examined her and said, "not tonight. Probably getting close."

Today's regularly scheduled hospice nurse reminded me it's really hard to predict. I know that because my Dad (really quick) and my husband (really drawn out) were two extreme examples. Even with that caution, she thinks anywhere from two days to one week.

Pain seems to be well controlled. The number of people we've had around could be too loud, but she hasn't seemed to be irritated by noise.

Thank you for all your kind thoughts. May warmth and comfort also surround you.

More Sleeping, Less Aware

Hi there, Brooke here. I forced (aka nicely insisted) my mom take the guest bed tonight and let me be on couch duty. I'll try to catch a little sleep soon, although Grandma's snoring makes it difficult...

Come to think of it, Grandma would be mortified that I'm publicly talking about her snoring. She'd probably insist she doesn't snore! But anyone who has slept under the same roof as her in the last (+/-) 15 years will back me up -- she snores loud and often.

It's endearing.

/

When I arrived mid-afternoon today, there was a house full of family. It was really neat. We've seen a lot of family and dear friends come to visit this week, which Grandma has appreciated. She's a woman who brings people together and makes them feel welcome. In these final days, the tradition continues.

Today (Saturday) was tough. When I was last here, on Wednesday, Grandma was still able to converse with people. Today she was mostly asleep, but in her brief waking moments, she didn't seem to recognize any visitors. For instance, she called for my mom (Julie), but didn't recognize Julie when she came to help. I don't think she knew who I was at any point today.

The morning might bring a brief spell of lucidity, but overall it looks like Grandma's awareness of people and circumstances has slipped away. It's hard to see this marked decline from just a couple of days ago. I think we're all feeling heavy hearted tonight.

If you're a praying person, please offer up one for Grandma to be at ease, and another for her family to feel the tender mercies of the Divine. Then hug your loved ones and do something nice for a stranger -- the world could always use a little more kindness. It's what Grandma would do.

Unchanged

Lots of visits today, but a very tired (less responsive) day.  My brother Michael and his family just arrived from way out of town, so I hope she was just saving her energy for a good visit!

David plays for Grandma Bette

If you can see my Facebook page, look for a live video I posted of "Grandson David plays for Grandma Bette."  I don't know how to link it from the blog -- if you do, let me know.  Or post it in the comments. GO TO ABOUT THE SIX MINUTE MARK where the setting and lighting stabilize.

(Tissue alert) (Beautiful)

At home

Thank you to all the visitors, messages, calls. Too much food now! Thanks for not overwhelming us with flowers, too.

She's been sleeping a log but perks up with visitors. Some conversations are really good, some groggy, and some silly. (Incredibly long, cognizant conversation going on right now with Trish Marco and Kelly S.)

Oh, and please don't get into a fight with her drink (who is going to hold onto it). Yesterday, both people lost and the apple cider won. Lots of laundry ensued.

The hospice nurse's initial visit was very nice, two hours. She will return every other day. 

Prognosis? Don't know. She seems stable for now. Brother Michael and family arrive Friday, so they may have a good visit. 

Comfort care

We made a lot of phone calls yesterday and asked the word to be spread further in family and social circles, so I am sorry if this is hitting you without a personal call: Mom is being discharged to home this morning for hospice care. That means end-of-life comfort care. 

Further interventions will not create improvement or bring back any quality in her remaining days.

We have a lot of visitors coming today and tomorrow, so bear with me if I don't answer your calls and messages promptly. 

Yes it is sad to see her go, but we are not really letting her go?  No. We will hold the memories of an incredible woman who had a wonderful life, a woman who touched you and I deeply in different ways.

Thank you all for joining us on this journey.  More later.

Not much change

There's not much change.  Mom's kidney function is a bit lower.  So many number are better from when she went to ER Sunday: white blood cells is a big one.  And other vitals are good: blood pressure is good, breathing is good, blood sugar is under control, temperature is normal.

Yet she just flat out looks bad. And she's retaining a lot of fluid all over.

When she spoke today, she could form words better.

She is still being treated, mostly, to support the kidneys.

We will see what tomorrow brings.

[On another note, there was a CNA this evening who I describe as a bulldozer.  Mom's left leg is hypersensitive (screams) to touch, and I had to keep showing the CNA to move the right leg, NOT the left. At the end, CNA was going to lay a pile of supplies on the wrong leg, and I had to snatch the pile from her hands. Doesn't everyone know not to do stupid shit when I'm stressed?  Not pretty.  I put it in nicer terms when I texted a cousin: "She {the CNA} needs some calming energy sent her way."]

Where to start

[Since August 26, Mom has had four stays, and 24 days so far, in the hospital; not counting one four-hour ER visit.]

Things are not rosy.

Today's doctors included the hospitalist, Infectious Disease, kidney, surgeon, orthopedist. This doesn't count her gastroenterologist who I happened to hear next door, and chatted with for a minute in the hallway.

X-ray on the left knee; between x-ray and ortho exam, not a problem there.

Kidney doctor ordered albumen, which could create a big turning point, hopefully getting the protein to help the kidney by keeping fluid in the blood vessels/cells and eventually getting to the renal system; currently escaping (profusing) into the body.

Infectious Disease ordered a broader spectrum of antibiotics.

Surgeon was called to evaluate, if I got this right, why she has so much pain and fluid in the left leg. There was talk about whether she might have necrotic fasciitis in the thigh muscle, which they can't really tell without cutting into, but ultimately the surgeon just wasn't convinced it looked likely, and too extreme for Mom's condition.

She's still delirious, just sleeping, hasn't had food in 48 hours. But when I held the phone to her ear for Aunt Char to say a few words, Mom seemed to grunt at appropriate times in response to comments. Later, she listened to grandson Bill the same way; this time, she managed, "I love you." She was in an I-love-you loop for the next hour, but better than 'no' moans.

Blood count progress

The white cell counts are back in a normal range. Huge improvement from yesterday's number. So officially she's not neutropenic now. But still fighting the infection and some dehydration.

She has been sleeping all day, no food intake, no conversation, and occasional moans. Extremely sensitive to having her legs moved, or even the calf slightly squeezed. The oncology doctor ordered an ultrasound on the legs (I was NOT in the room to share that pain of that test, 'just' an ultrasound wand pressing on a sensitive area); the infectious disease doctor added an order to CT the abdomen, because she complained bitterly when he push-tested. Results: no clots in legs; nothing beyond lymphoma in the abdomen.

In other words, no answers. I'm now thinking she is experiencing extreme delirium.

The oncology doctor said she can still have chemo treatment when she's better.  Next Thursday's treatment will be pushed out a week.  The "chemical" side will be reduced by 25%; the antibody treatment can stay at full dose.

Ups and Downs

Up: Mom ate a great portion of her dinner tonight.

Down: She's very confused.

Up: White counts and platelets are improved.

Down: Bacteria of e-coli in the blood test.

Up: Not as combative as last night.

Down: She has weird dreams and carries them into "reality."

Get an email notice of new posts

New feature: you should see a "gadget" on the right side where you can sign up for email notices of new posts.

Just enter your email, then confirm-you're-not-a-robot, then go to your email for the final confirmation and you're set.

(Thanks to son Bill for pointing me in the right direction)

Paranoia plus

Saturday sucked.

Sunday was worse (I said I didn't have words).

Today topped worse than suck-y.
Mom had lots of vague commands, and anger at not having those 'needs' met. Yes, my sweet, forgiving, humane mother. Then late in the day she suddenly refused meds, refused a changeover in the IV bag and the second daily dose of the daily antibiotic. I won't detail all the arguments, counter arguments, paranoia, weirdness, and tears. But I was seriously concerned too much time had passed to keep her access port viable; it has to be in use, or else flushed with saline every hour.  We finally got to a point where she agreed to let a nurse try to flush it; it still worked after not being used in two and a half hours.

I hope tomorrow goes back to regular suck day. I will celebrate it.

Thanks, but NO flowers

Please, no flowers.  They wouldn't even make it to her room.  Flowers (and any fresh produce) can carry bacteria and fungi -- dangerous to her right now.

Neutropenia

Neutropenia is an abnormally low level of neutrophils, a common type of white blood cell to cancel infections. Mom is in-patient again because of neutropenia. Her white blood count "was not measurable." The hospitalist just told me Mom has 300 where 10,000 is normal.  But he also added there are a fair number of young (or immature) white cells, so it looks like the bone marrow is trying to manufacture them and hope tomorrow's counts improve.

(If I thought yesterday sucked, today was... I don't have the words.) 

Sorry, visitors are not advised. She is very immuno-compromised; I have to wear a mask too.

Today sucked

Yes, today sucked.  We knew the hard part was coming, and it's here. Anti-nausea drug has helped, but Mom is tired, not eating, and probably dehydrated. 

Sucks sucks sucks.

Side effects

Some side effects are just starting. Mom mentioned over the last couple of days her "taster" is off. This morning she said her mouth was sore, so she's starting on baking soda rinses; appetite is down. The perky action from the steroid is gone, so pretty tired again.

But we went to the flying club dinner this evening. Some guys were up to date, some not, but all were very kind. Our table ended up swapping boat stories!

Lab tests; Got Blood? And thanks to all.

Regular lab tests today (there will be another next week). Mom's counts (hemoglobin at 7) are down a bit from last week, and the chemo will likely lower it even more, so she got a unit of blood.  Fortunately she hasn't had any dramatic side effects yet from the chemo and, with the steroid, seems to have even more energy than usual.

I've been remiss in thanking so many people who care so much for Mom.  Letters and visits and emails and texts and calls. 

I asked Mom if she wanted to make sure anyone got special "thanks;" she said "Everybody."  I'm taking a risk of missing someone, and offending anyone who thinks they should be 'higher' on this list (no, it's my random access memory). Char, Jo, Susan, Judy, Lynda, Sabrina, Theresa, neighbors, Bill K, Bill and Vicky Z, Missy and Brad, Regan, Julie and John, Rick, Rhonda, Rhoda and Scott, Rhochelle, Rhea, Fernando, Bill and Joan, David, Michael and Julie, Bill and Terra, Ben (especially for holding down the house for me), Brooke and Nate and Ky, Dianne, Christine, Charlotte C, Linda, Donna, Camille, Danny and Hannah, Emily, Walt and Dianne.  Plus her own personal mafia of doctors (small town, they've all known each other 20+ years), and the super nurses.  And 9-1-1 services...three times. 

Apologies in advance to whomever I missed (and thank you too)

Doing well, still has hair

This update isn't much, just enough to say Mom is doing well. 

The steroid (Prednisone) could be a big player in keeping her so awake and alert. Saturday was a bit silly, as she said she couldn't get to sleep at 1 am. I tried a soothing voice, "See yourself in a boat, fishing, warm day,...". But she couldn't hear me (hearing aid out, of course) and my loud voice isn't so soothing. 

"Okay Julie, I'm going to work really hard at going to sleep."

"Mom, you can't work hard. You need to stop working your brain."

"Okay."

Wait for it, five seconds, "Oh, and tomorrow I want to call Alice........."

Second round of chemo - October 6

Mom had her second round of chemo. The oncologist said the first round was a little more than half of a normal dose. He took a lot of time to talk about how aggressive her cancer is -- they continue to look at samples from the biopsy ("they" meaning the experts at OHSU). He also went through her blood test numbers thoroughly, all leading to a conclusion that she should have the full dose of chemo for this round.

A very full day, getting to the appointment at 9:00 and leaving just after 4:30. She went home with a Nulasta pack attached to her belly, which will release hormones in about 24 hours to boost white blood cells.

She will have labs next week, and a third round of chemo in three weeks (October 26). She loves the nurses. 

She came home, opened mail, and took a three-hour nap.

No broken nose; chemo Friday

Mom was trying to make her follow-up appointment with ENT, but the office called back and said she does NOT have a break. Okey dokey, less appointments is better.

Chemo Friday! Some people have Taco Tuesday; she gets Chemo (every other) Friday. During the call to set the time, the nurse asked, "How are you after your fall?"  Word gets around in a small town.

One adventurous woman

4:35 this morning I called 9-1-1.  Nothing cancer related.  Just Mom keeping things interesting for all you dear readers who have been waiting nearly a week for updates!  Truly, though, I think Mom didn't want to bother waking me for help, tried to get out of bed herself, and fell.  Right onto her nose.

Yes, her nose.

Lots of red stuff that she really can't afford to waste.

We got back home four hours later.

The initial read of the CAT scan was no broken nose, but the ER doctor called later to tell her the in-house radiologist believes there is a slight break. Mom has to give it about a week for the swelling to go down, then see an ENT for follow-up.  The bruising is interesting; no, just icky. 

Luckily my brother Bill built (just yesterday) a ramp in the garage so Mom can have easy entry/exit.  It was convenient for the ambulance gurney this morning. 🚑

It's a beautiful ramp. Broad, Burley, Blonde.  Believe me. Bro-Bill-Built.