A purty flower on a purty day

Aunty L brought this orchid for Sis C's belated birthday. It's so unique looking that I dragged Little E outside with me so I could take a picture of it. The wind was blowing so hard that we had to hurriedly rush back inside so the leaves didn't blow off.

We've had mom hooked up to the oxygen machine for over 24 hours. It seems to help her rest without much interruption including less need for additional pain meds. It would be interesting to know exactly how it is affecting her body. Gay laughed at me when I told her I wanted to try it out before we hooked it to mom. I feel it's the least I could do to experience one of the many invasions we've subjected her to. We all keep in mind that what might seem to work well one day might not the next.

nā lei hulu i ka wēkiu

Big E and I went with friends to see Patrick Makuakāne's San Francisco-based hula halau Saturday night.

The program was called "O'ahu: Confessions of an Island."

The evening was an interesting and sometimes exciting blend of ancient hula kahiko, instrument and voice-accompanied hula 'auana and Makuakāne's unique hula mua or, progressive hula.

I was commenting to friend D that the upper bodies and hands looked a bit stiff, but upon reflection I thought that maybe the hands and upper bodies were supposed to look like that. I have to give Makuakāne credit, he is creating art out of the hawaiian diaspora and teaching both students and audiences a more nuanced view of hawaiian culture and the damage of colonialism.

Not everything worked, he can skirt too close to kitsch, but he got me good on a Princess Ka'iulani piece. I was apprehensive that we were going to be subjected to yet another nostalgic tribute as he introduced the setting with familiar images of PK. There were 2 sets of wāhine dancers, in traditional kahiko garb and somber, jewel-colored holoku.

The piece cycled through all styles of hula and ended with a hula mua, performed by the holoku-clad dancers to Cassandra Wilson's version of "Time After Time."

Wow. Haunting and evocative of familiar losses that resonate within our psyches in the spaces where no words exist, it was profoundly moving.

We don't have to try too hard these days to feel the imminence of leave-taking and loss.

going and coming

I'm headed back to the bay area today to take care of business on that end. I will be back very soon. We have many logistical details to work through here and we all agreed that it is better to do so now. Life flows ever onward and we haven't figured out a way to stop time.

I will get reports from my sibs and continue to update the blog.

Mom is comfortable today. Communication is more infrequent, but she still acknowledges the messages of love and support we pass along to her from all of you.

hospice

Deja vu all over again. New team, same questions. Mom's sister Auntie L was here for the meeting and I put her next to the hospice social worker, H. I chose to stand as far away from her as possible because her high-pitched, yet soft "compassionate" voice, grated, and she is crazy as a loon.

At least, that was the consensus after the team left. Auntie L could barely contain herself. She didn't like H rubbing her back and fixated on H's hula hand gestures. I didn't think the gesticulating was particularly phony, but at times it did look as if she was interpreting her own words into sign language.

Sister A tried to tune H out, as is her wont. She did mention that maybe H was sent to us so we could let off steam by mocking her. We don't have Sis C's opinion yet, but when asked, mom didn't have a problem with her. She didn't object, however, to my characterization of H as a harmless kook.

Nurse D was just fine and we thought that J, who was "shadowing" H, should instead follow Nurse D.

While we are grateful for all the services that hospice affords us, we think they should screen their employees more carefully. There appear to be a few people attracted to hospice work for the wrong reasons.

musical interlude with pua kenikeni

A traveling minstrel troop showed up with instruments and willing, if uncertain, voices. My musical aunties + 1 uncle brought us lunch, and mom some of her favorite pua kenikeni, Lit. 10-cent flower, a subtly fragrant orange-ish lei flower that mom grew at her long-time home in Niu Valley.

The pleasant interlude with old friends and her beloved cousin Auntie S, provided mom some much needed distraction.

We hope they come again soon.

FAQ: How are you taking care of yourselves?

Answer: granny racing

Click on the "play" button.

facts of life

Mom was more alert and communicative today. Her meds will definitely have to be tweaked as she is not getting her pain level down. However, she showed some interest in liquids and she's working on a shake as I write this.

We were able to get her nail beds looking a bit more healthy and we'll continue to rub her down and massage her hands and feet. I found a great massage clinic in Kailua and they're experienced in elder care and are willing to make a visit to the house for comfort care. The clinic also has a licensed acupuncturist on call so I will check into getting mom some supportive treatment again, here in the house.

Dad continues to grumble about mom abusing him. Once a houseboy, always a houseboy. She abused all of us last night. I was trying every trick in the book to get her to acquiesce to being carried back to her newest automatic bed. Hospice delivered some equipment yesterday and, following Auntie L's advice, everything they offered, we took.

This meant that we had to take apart the automatic bed Brother and I just moved up into the sick room to make room for the one with rails. Yeah, a tale for another day. All this re-arranging required that mom be deposited on the mauka bed and after all was prepared, she kept saying no to our suggestions that we move her back to the makai bed.

Finally, when Sis C came late in the evening, we asked her again and, after the same refusal, ran through a checklist of her reasons including; pain, anxiety, and exhaustion. No, no, and no. Mom said no to all the reasons. At a loss, I asked, "Are you just being stubborn?"

Finally, a yes.

not maudlin mom

We got to meet Dr. S, the palliative care doc, and the rest of her team today. They didn't use their "understanding" voices too much so it was easier to focus on the issue at hand...at this point in time, where is mom on her journey? Brother came and Sis C had to be speaker-phoned in due to the most recent idiot drivers on Kamehameha Highway getting the road closed for hours from Kualoa Ranch northward.

Dr. S moved into action and after a flurry of activity and questions, recommended that the focus should be on more aggressive pain management. The most important reason was the obvious one, she should not suffer. Her abdominal pain has worsened, which in turn has meant poor sleep and less appetite than previous weeks.

Pain management is the easiest thing to address. The more difficult decision we made collectively was to stop treatment for the cancer. We've come to a crossroad and we do not believe Mom will be getting better. Our focus now is on making her as comfortable as possible.

There is no map from here on out. No known destination, only milestones. We will continue to accompany her as far as we can, but we are preparing to say good-bye.

Mahalo to all mom's loved ones and our friends who've kept in touch with mom and with us through this blog. If you would like to contact the family, please

• send an email to: notmaudlinmom@gmail.com
• call Sis C's mobile

The blog is not shutting down. I will continue to post. I read a message to mom this morning from Tex, and we will be happy to do the same for all. Just remember the name of this blog and know that mom is acute enough to judge the Maudlin Factor of your message. After I read Tex's email to her I said, "That wasn't too maudlin, was it?"

She smiled with her eyes closed and made a short chuckling sound.

a picture is worth one word....yikes

...mom's response after Sis C forced her to open her eyes and look at the painting a friend of dad's had gifted him.

erin go bragh

Mom was alert enough to realize that the sirens we heard this morning were stopping at our house.

Dad celebrated St. Pat's Day by calling the Ka'a'awa Fire Department down upon us at 4:45am. He was browning lamb for his lamb curry and the smoke detector went off. Security called right away and he told them it was a false alarm but I guess those guys at the station hit the road within a minute of the alarm sounding.

Too bad we didn't have any curry ready to share with them when they arrived.

march madness

I'm back in Hau'ula, working from the house and assisting mom with her daily routine.

The water level is way up from a month ago, no beach, but the weather yesterday and today...gorgeous.

Brother and I exchanged mom's bed yesterday after Sis C dropped me off. A friend of hers had an adjustable bed so we kept it in reserve until needed. Mom's weakened condition means this bed's up and down buttons are getting quite a bit of use.

Mom requires much more hands on care than she did a month ago. The liver blockage that was discovered while she was in the hospital set her back and she has to work hard if she wants to try another chemo protocol. She is simply too weak, though her labs have been good.

The main question on all our minds is how feisty she's feeling. Between her weakness and all the synthetic drugs in her system, it's been challenging for her to maintain extended periods of specific intent. I've been talking with her, laying out scenarios to try to gauge where she's at in her own mind, spirit and body.

The family will meet with the palliative care team this week to discuss mom's goals and how we can help her in achieving them. Right now it's much simpler, she has to work to nourish herself. She is struggling. We are coming to a cross road in these next few days. I will do everything in my power to help her get there. Taking stock happens in shorter intervals now. We will examine the paths together when we get there.

Interesting how, even with no map, you know when you arrive.

small things

Catching up with Sis C tonight - mom is doing a bit better today than yesterday. We chart mom's ups and downs with the smallest of measuring sticks. It's amazing, really, how the mind and heart can encompass the most complex thoughts and deepest feelings, yet also focus on the tiniest of milestones, only discernible to those of us who know mom well.

Since mom is still a bit shaky, I asked Sis C to talk with her about doing without her slippers inside the house. It's not quite like taking the car keys away, but it is changing a lifetime habit. At least as long as we've been around. I've never understood why anyone would wear any footwear in the house unless it's socks on a freezing night, but mom has been the butt of family jokes for years because of her penchant for indoor footwear and her notorious clumsiness even when healthy.

She once fell up the stairs. So the crocs are out. Tabis, anyone?

momcam

Mom's sister Auntie L took the day shift today. When I called to check in to see how both were doing, she told me they were still talking.

I should have set up a webcam to observe the sisterly interactions. I'm sure I could have learned a thing or two. Hey, maybe I'll set up a momcam when I'm back home. Nothing too intrusive. I would promise not to set one up in the lua.

I could have the Nephew monitor his grandmother, remotely. Prepare him for a job with the NSA or FBI. Yeah, I'm liking this idea.

monday funday

Mom is still very shaky. She is gradually increasing her intake, post hospitalization. She will have her blood drawn on Thursday to see where her various counts are. We are hoping that her levels continue to improve and by next Friday, when she sees her oncologist Dr. C, she will be greenlighted for her new chemo protocol, Alimta.

We'll see how this dna/rna suppressing drug works on the cheneys. This treatment usually takes only half-an-hour so at least mom won't be spending all day in the chemo ward.

If she is given the greenlight, she will go right in next week Friday afternoon. Treatment will be every 3 weeks but we don't know how many will be recommended. Stay tuned.

buggy

Did you know that dried beans are the perfect environment for the breeding of armored black beetles? Soapy water for drowning seems to be the best way to permanently rid your food stores of these pernicious pests.

Mom got an unexpected visitor today, one of her grandcats, Coby. Mom has been talking longingly about the benefits of cats, so Sis C brought one of her goofy family cats for some TLC.

It sounds as if the cat visit was somewhat of a success, though I don't know how well the cat mixed with grandguineapig, Oreo, Brother B's newest household member. Apparently, great minds think alike as far as the health benefits of animals, but c'mon, a guinea pig? No contest, the cat wins, paws down, even a goofball like Coby.

Sister A leaves tomorrow and I won't be back until next Saturday. The care and feeding of mom will be left to dad, Sis C and Brother and their families.

Mom is doing a bit better, but the intake situation is still quite a bit of work and she's weak from her hospital stay. She does better with someone there to keep her eating and drinking on a regular basis. I'm looking forward to getting back to Hawai'i to help out.

I would like to order some sunshine and dry weather for my visit.

home again, home again

The prisoner has been released. No time off for good behavior. Besides, according to Sister A mom, while agreeing that she needs to take fiber every day, also issued an order that fiber was not to be talked about ever again. Ever.

We need to get mom back to fighting weight again after the no-intake hospital stay. She is interested in another chemo therapy and Dr. C has already discussed a Plan B with mom. Stay tuned.

I'm glad Sister A and mom will have some home-time together before Sister A splits on Sunday. You can't measure the healing powers of a place, but mom truly loves to be home at the beach. I think that counts for something.

Sister A said that mom was slowly getting back into the work of eating, but that some of the symptoms she was dealing with earlier now seem to not be issues. Who know how long that will last, but they aim to take advantage of this window.

Mahalo to all for the positive thoughts and prayers for mom to get through this latest setback mostly intact. She seems to have done so.

pho, a long, long way to run

Mom got to eat today. Amazing how being denied food can make you salivate when you haven't had much appetite or pleasure in eating in months. She "shared" a bowl of pho with Sister A.

As of today, mom's blood work resembles a normal person's. She may get to go home tomorrow.

We are cautiously optimistic that her liver is functioning well. This means that we can start thinking about new options for chemo. There are many combinations of poisonous chemicals to slow the growth of cancer cells.

Perhaps mom's cheneys would cower before war crimes charges in the Hague?

we're still going to keep fighting, right?

Mom to Sister A today.

'nuff said.

this-n-that

There appears to be improvement on the liver front. Now mom has to get the rest of her infections cleared up. Her white blood cell count is low again so, no visitors, please. Really.

Sister A and Sis C are keeping me updated and all 3 of my siblings are continuing to take turns sitting with mom, logging all procedures, drugs, other fluids and medical professionals' visits.

So bizarre, each specialist only focuses on their own area of narrowly-defined responsibilities. I am so relieved mom has advocates in the room with her to synthesize all the information provided by each specialist AND to pass it along to the next one that comes along, as there seems to be no role or even acknowledgment that there needs to be such a role within the hospital environment.

For all the money that goes into our health care "system" and for all the really smart, well-educated specialists we turn out, the actual patient care is mediocre, at best. Yes, the sum is less than each part, added up. Sad, huh?

The irony of hospitalization when your immune system is compromised is that they won't release you until your infections are manageable, and yet, there is no better place to catch innumerable and unnameable bugs and diseases.

We're putting all our energy into getting mom out of there and all the things release implies.

saturday night's alright

The clan is taking shifts with mom and trying to stay out of the nursing shifts' way. Apparently there is more scrutiny on families staying past visiting hours these days at TKO due to, what else, people abusing the privilege.

Sis C had to get Cousin R to intervene after Sister A was hunted down and escorted out by security Thursday night. Hey, what is family for after all? We believe it's better for mom and better for all concerned to have someone with her.

Today she even had guest caretakers in Cousins T & L, visiting from the mainland. Thank you cousins. "Now don't come back." Mom can be overly gracious at times.

So far, so good. If mom's liver continues to flush out and gets back to work, she may be released Monday. No question she's had a setback, but perhaps, caught early enough, there will be other options on the table.

Let's see what tomorrow brings. Right now mom is reasonably comfortable so we'll leave it at that.