Sticks, Stones, and Paper Stew Blog

Friday I went down for a 1:30 visit and met up with Lee who was already sitting in her room. The nurses has started her on an IV drip of morphine so she would stop having all the ups and downs. Kim and Kirsten experienced some pretty bad stuff while they were visiting the day before. Fortunately the drip had not started when her two oldest friends from nursing school came for a short visit.  Lee and I found out Bonnie & Irene had stopped by via the nurse.

I was able to see some eye movement during my visit. She seemed to try to say something when I was leaving and telling her I loved her very much. It was one of the most difficult visits because of her inability to speak. Mike unfortunately experienced less reaction. Here is his report from his visit that also included Shannon and his oldest child Chris.

Not so good…
Radically worse than yesterday.

We heard Bonnie and Irene had come by earlier, probably
not quite what they were expecting. A morphine drip got
added to the mix today. I’m sure it helps remove the pain
but unfortunately it removes just about everything else too.
Yesterday’s dosage was (I guess) not keeping up
with demand at 2mg every 90-120 min. Today the
drip is delivering over four times as much.

I also heard from Gale who was there in the earlier afternoon.
Kim met up with us about six and Christopher came along too.
I’d say he did pretty well.
She was unable to converse and had reached the point where
her eyes were no longer following bright lights, apparently a
recent development according to the nurse, who also pointed
out that she is at least no longer making frowning faces due to
the pain. Hard to tell if that’s “no pain” or “no control”
I suspect it’s ‘no pain’ since she can still move some of her
facial muscles when she appears to attempt to communicate.
Things seem to be heading down pretty darn fast now.
I can’t really say if that’s a good thing or not. Sad.

Afterward Lee took us all out to a nice restaurant. I’m afraid
I didn’t appreciate it much.
Not really in the mood.
Sorry Lee.

Mike passed along last nights report via email that I thought you all might like to read.

The new room 8127 is pretty nice. Didn’t see it in daylight but from the
direction and building layout it should have a great view of the river
and valley out toward Marcola.
A couple comments she made pretty solidly imply that she thinks
she’s back in the South Hills first floor room. Bits about not letting
the cat in and the feeding schedule. She may be in for a surprise in the
morning. I’m not sure we managed to get across the idea of where
she is.

We got there as Kim and Kirsten were escaping. I gather things
had not been really all that pleasant. The stuffed Kangaroo Kirsten
gave her is cute. She had just had a dose of morphine and had
dozed off a bit before we got there. Stayed in nappy mode for
about another 20 min. and then woke up in some pain. Mostly
lower back/hip area. Got the nurses (Lisa and Mary) to move her
up and reposition the bed. That helped some.
She was taking even longer (10-12 sec.) to answer any question
but as time went on she got clearer and stronger and was using
complete sentences. Sometimes responding immediately. Best I’d
seen in that regard in a week.

She was able to read the notes on the board across the room
so the eyesight is doing better than I expected. She handled
her Sponge-on-a-stick for mouth hydration pretty well. Again
better than the last couple days.

Since the pain was getting worse we had the nurses in for another
position change and that helped more than the first time but she
requested another dose since things still weren’t going well.
About 90 min. between doses. Could be better…

Ya should have seen the look on her face when the volunteer
came by and asked if she wanted to hear Harp Music. Really,
they have a harpist who comes by. Somehow that idea didn’t sell well.

Just received a phone call from Kim with the freshest news from Lee. He talked with Laura(palliative care coordinator) and Evelyn’s feeding tube will be removed today. She will be moved to the 8th floor for the remainder of her care.  He stayed with her until she fell asleep. He left to go in search of PJ’s and lunch.

So I finally headed to Eugene under cloudy skies with sun breaks around 11am. The drive was beautiful, fields emerald green under bright bursts of sunshine, 5 eagles, no rain and traffic not to busy. If I had left earlier I probably would have seen her longer than 5 minutes. However today’s nurse Ken had just administered a shot of morphine to ease more pain. She listened to Zac’s sweet note but I couldn’t see her reaction due to the fact I was reading it. Rather than bringing along a book, I took artwork. This actually brought about a favorable response. She was situated on her left side in order to give her tailbone a break. So I held the color print of the dancing dungeness crabs at an angle for her to see. The blues and greens of the print are colors she approves of and she actually seemed to like looking at it. The next image I pulled out was the start of the coastal tree print. I just copied off the tree photo onto white paper, nothing fancy. She seemed to approve of it too and I told her that I would bring the proof on tomorrows visit. Guess I have an art project to work on tonight. She got crotchety and kicked Kim and I out. Kind of like the Evelyn we know all too well!

She did look a tad better today than yesterday afternoon, but her vitals are not improving. She is weaker today, unable to swallow or lift her arm to use the “sucky stick”. Ken tried offering her ice chips, but she couldn’t even handle that. Dr Amean took her off quite a few medications and boosted one to help produce red blood cells (Hummm, Marilyn!). Can’t for the life of me remember what the medication was called. She was also receiving more platelets and her feeding tube was pumping Nestle’s finest into her intestines. Or is it Hershey’s? Anyway, one of the major chocolate producers. Ironic since she hates chocolate. I digress. I would have loved to run into Dr Amean to REALLY find out what showed in her bone marrow. The word on the street is “nothing” so what the heck? Is she just an enigma wrapped in a conundrum? Will we ever find out? There are two hematologist working her case, plus countless other specialists in a variety of fields. Stay tuned for another installment of  “As the ICU Turns”, probably happening on a computer near you during the late evening. I have a 1-3pm meeting tomorrow with an arts marketing group and a print to get done ASAP.

By the way, if  anyone becomes interested in the said print and want an original when it’s completed, just drop me a line. I’ll probably take some images to post at a later time so you know what its like. Might not be your taste at all. Print dimensions will be 5″x7″, oil-based ink and probably watercolors over the top.  email me at : gale.everett.studio@gmail.com

Huh. Doctors didn’t find anything in the marrow. Lee is not always the best at relaying information so Kim & I will have to inquire with today’s nurse.

The feeding tube they inserted yesterday morning must have finally moved into place and she must have received some food. Lee said she looked a degree better today… not great but just a tad better.

I’m off for yet another drive to Eugene. Think I’ll take along the finished color print of crabs. She might like the blue and green combination.

More information to come.

The circle of life for Evelyn is quickly closing. Yesterday she had Lee, Kim, Kirsten, Mike, Shannon, Dave and I, plus Laura with palliative care, there with her while we asked questions concerning her comfort over the next couple of days.  It takes about five seconds or more for questions to compute in her brain and longer for a single word response. Some of the questions she didn’t want to answer and would remain mute. That’s ok. Some questions would produce a facial expression one could call a sneer. You could tell that was her “no” face. When she becomes unable to communicate, she wants us as a group to make the final decision in her care. We will honor that request to the end.

Biopsy results were supposed to come back yesterday evening but did not arrive before we all left for dinner. The oxygen level she has been receiving were at 40% and bumped to 80% on Monday night when Mike was there. By Tuesday evening the nurse had bumped up the level to the max. She is on morphine to ease the pain. There is nothing that can change this course of life.

Her youngest grandchild has passed me a message via email that I will go read to her today. Kim and I will be popping in to read James Herriot stories to her. We might have to do some pre-checking to make sure not to read any of the sad ones.  If I can find an Oliver Sak’s book before heading down, I think she might enjoy his Oaxaca one. He talked about mosses and plants while traveling in Mexico.

Waiting to hear Lee’s morning report….

Thank you all for your kind thoughts & love.. .

Yesterday the bone marrow biopsy was taken. Results may still be a few days out.

Occupational therapist was in and had Evelyn wash her own face and brush her teeth.

Our nurse for the next few days is Mary, one we had on our last trip through ICU back in September.

Palliative care will be assisting the family with helping to try to let Evelyn understand that life is coming to an end. What is palliative care? It is “medical or comfort care that reduces the severity of a disease or slows progress rather than cure it.” Our hopes are to find a good place for her to be comfortable.

Evelyn does understand that if she leaves the hospital, than she will die. Laura, the Palliative care person, said Evelyn reminds her very much of her own mother who wasn’t about to accept the end of her life. As she put it, “she was like a cat on the screen door of life” or something like that. I’m sure you all can conjure up similar images. She was going to suggest to Dr Amean prescribing anti anxiety medication for this situation. I’m pretty sure it wouldn’t hurt.

The family will be meeting up at 4pm. Lee is back this morning from Yachats. I hope the escape did him some good. Yesterday I mentally shut down and watched movies all afternoon, drank hot cocoa and tomato soup, contemplated a new block print design involving a wind swept coastal tree. Couldn’t quite face going back on line to this page to write.  Breaks from email and blogging are necessary since answering questions wipes me out. I’m sure you all understand.

So that is where we stand going into today.

Papers will be signed in the sale of WET Labs, the business Dave & my brother Mike both work for. Nothing like having all sorts of extra stress thrown into the cogs of life.

My friend Ella wondered how Lee was holding up. I started writing a reply in the comment section but realized others might not check that area.

Lee seemed to accept fairly early on Evelyn’s transition. He told us that he thought this whole surgery thing was a bad idea. Low and behold, he was right! He always keeps emotions hidden and I can’t remember ever seeing him really grieve over the loss of his brothers and mother. His motto has always been “don’t look back”. You just keep moving forward. He does appreciate us kids coming down to see him, having dinner/lunch, trying different restaurants or just meeting at the hospital. He and I were discussing what his next art project would be and even his joining the arts group in Yachats after everything is done. One big focus has been on getting the catnip growing business up and going, especially since the greenhouse is just sitting empty right now. We have agreed to attempt 50 plants for my backyard. Now I need to get busy and build raised beds.

I’ll be spending the morning looking into hospice care for Evelyn. Will she even last until Wednesday? Hard to say. Ideally, she will come to the realization that quality of life is all that remains  and want to shift with encouragement. Where will she be the most comfortable? Does she want to head back to Yachats? Would she be comfortable being back at South Hills Rehab/Retirement or do we place her out by Valley River Center in the other facility? Can we find another location with a good view? How much time does she really have with the remaining blood cells in her body? It’s always easier to write these things down than to actually face her.

Mike and I have been talking for many months about another trip to Hawaii. We were thinking Evelyn would be healed by March (this was our hopes back in September).  Now we might be spreading the guest list to include Lee & Kim. Front line folks might like a shift to warmer climates for a week. I think Lee could better handle a 5hr flight than the umpteen hour flight to europe 3 years ago.

Transitioning life is moving forward. All we can do is give her our presence and love.

I’ll let you know what today’s results are when I find out.

Today’s stats: platelet count down to 9k. White blood cell level down to 1.4. Her bone marrow is not producing any blood.

Mental state is total denial of what’s happening to her body.

She is not going out without a fight.

Jenny the nurse has been on the receiving end of her attitude shift. They had some sort of tiff between them today, but fortunately she has the next 3 days off. Talk of hospice also didn’t go well. When Lee  visited, he was directed to feed her ice chips for well over an hour even though she can do it herself. Kim, Dave & I arrived around noon and stayed for 45 minutes with her until she told us to leave. Kim and I both feed her some ice as well. What little control of life she has she is taking and demanding the bone marrow biopsy on Monday.  Trying to boss around the nurses and family will continue as well.

Checking the web I’ve run across a disorder called aplastic anemia which seems to match her marrow problems.  It’s characteristics are slow to no production of any blood cells (as you may remember, there are 3 types of blood cells the marrow produces).  Not all bone has marrow to create blood. The stem cells in bone marrow creates the blood. In younger people harvested stem cells can be inserted into a bone and it is possible for it to start producing blood again. However Evelyn will not fit into this category.  The marrow biopsy will let her know that nothing else can be done. Maybe then she will accept it and allow the discussion of hospice to start.

Dave and I will be heading down for a morning visit today. Yesterday, like the day before, she slept through the afternoon. So please visit during morning hours.

Had a very good conversation with Kathy out in Connecticut last evening. It’s going to be hard for her to tell  Zac know about his grandmothers condition. Big huge hugs to you both and I’ll talk to you tonight!

Thanks to all who have passed along such wonderful notes. I’ll make sure the rest of the family gets to read them all.

Evelyn is still in control of the situation and Lee & the rest of us are there to make sure her wishes are granted. She and Lee have living wills and all that legal stuff. Yesterday she still had the energy to shoo Tom and I out of her room. I wish that the ticking clock wasn’t her main focal point at the end of the bed. Time keeps on ticking….