galling

Mom got a 2fer today. Opened up her bile duct AND got a gallstone removal thrown in as a freebie. She's doing fine. It's wait and see time for the liver. We are hoping it wasn't too damaged.

I bet that gallstone has been causing mom some pain. I'm sure it did not form overnight. I wonder why it wasn't discovered earlier with all the scanning and testing and oh, never mind.

Did I mention she was sent home Tuesday after chemo was stopped with a UTI, no meds, no plan and a needle stuck in her port?

Yeah, we're stilled PO'd.

liver lovers

Apparently even mom's cheneys are defiant. The ultrasound showed blockage of the bile ducts, but not the cause so she had her CT scan this afternoon. The scan indicated that the cheneys have become resistant to the chemo drugs in this protocol as evidenced by the swelling of her abdominal lymph nodes which, in turn, are blocking the bile ducts in her liver.

Tomorrow mom will undergo Plan A to open up her ducts and if that doesn't work, Plan B. The focus right now is on getting her liver working again and minimizing any damage to it. The cheneys will have to wait their turn.

I'm keeping the blog up because Sister A has her capable hands full with mom's hospitalization. She said that mom seems to be hanging in and is planning her lawsuit against TKO. Just kidding Cousin R. Did we mention the needle they left in her port Tuesday when they sent her home with a UTI and liver malfunctioning and no meds and no plan? Yes, they were already to Kaneohe when the nurse called, "Oops!" and they had to stop at the Kaneohe clinic to get a nurse to remove the needle.

What does HMO, really stand for? I will donate $25 to the charity of your choice for the best suggestion.

don't trust, then validate

Well, it's a good thing we got mom admitted to the hospital last night. The fever Sister A couldn't get to come down yesterday was due to a urinary tract infection (UTI), something that we suspect TKO should have known Tuesday, when chemo was interrupted. UTI, so simple, eh? Not when you have a completely silo-ed institution and protocols that are designed solely to C-Y-A each department's collective rear ends.

Oncology looks at illness strictly through their cancer lens. So, instead of consulting with an internist Tuesday regarding the liver malfunction, Dr. C sends mom home with nothing to address her jaundiced condition. Hey failing patient, just wait until TKO can do a thorough CT-scan with the emphasis on finding out if the cancer has spread to the liver.

Tuesday night, I said to Sister A that chemo is very toxic to the liver, and that it's not uncommon to have liver problems. Yes, of course it's important to know if the cancer has spread, but there are other explanations and they should be, at the very least, eliminated.

We're happy that an ER doc, Dr.H, took some initiative in examining mom. The UTI was id'd right away and antibiotics administered along with saline for her dehydration. There were a couple of other minor issues that were addressed and Dr. H confirmed our growing suspicion that the liver issue could and should be addressed by means other than a CT-scan.

So, mom is scheduled for an ultrasound today to see if there might be other, more easily corrected reasons for her liver's malfunction. Dr. H explained to Sis C and Sister A that chemo is hard on the liver and that there could be an obstruction that could be seen using ultrasound. Thank you, Dr. H, for listening to your patient and her family and providing them with information they didn't have to pry out with the jaws of life.

Another irritating note, TKO completely screwed up their internal communication on pain dosage. If my sisters weren't logging everything down in the admitting process, the orders would be completely wrong. As it was, Sister A had to make them go back to the docs twice, and she also noted the written order was incorrect.

The compartmentalizing of specialities and departments in these healthcare institutions is bad for the patients, bad for the staff and is plain bad medicine.

Please Obama, pass a universal healthcare package so we can get rid of our wasteful, inefficient for-profit healthcare model. And healthcare professionals, humble yourselves and listen to your patients and their caregivers. They might actually know something you don't.

chemo interruptus

Mom's chemo treatment was stopped midstream today because it was discovered she was jaundiced. She is to be scheduled for a CT scan in the next couple of days to try to determine was is going on with her liver.

The choices aren't great but obviously we're hoping that it's the chemo, and not that her cancer has spread to her liver.

One frustrating note in this process -- how little attention health care professionals listen to their patients. Apparently mom and Sister A noted a couple of obvious signs that her liver might be malfunctioning to Dr. M on Friday, but no follow up, even though they were back in the hospital half of Saturday for the transfusion.

The other irritating issue is that there doesn't seem to be serious attention paid to the liver. For instance, since she's been in chemo, mom's pain meds have contained Tylenol, i.e. acetaminophen. We all know that's bad for the liver.

Sister A and I have spent countless hours discussion mom's pain meds and the safe amount to give her because of the acetaminophen. No doc has emphasized caution or offered a different pain med offered until Sister A asked about it Friday and was told that they had run out of the Tylenol-free oxycodone. She eventually was able to get her hands on some, but, again, why do we have to bring this up?

Chemo is notoriously hard on the liver. Why is TKO prescribing pain meds with acetaminophen when there are other options? Really impossible to have any confidence in these jokers right now.

dreaming

2 recent dreams by my mother:

* during her recent hemoglobin low...mom is back in bed in a hospital and notices 2 figures sitting by her bedside - they're nuns but she can't quite see them clearly. Somehow she realizes the 2 nuns are me and Big E and we are giving her "the stink eye."

* last night she dreamed of filet mignon

Given her severe lack of appetite these last few days, I'm not sure which one is the nightmare.

blood music

Well, mom's lethargy since Wednesday was explained during Friday's blood work-- low red blood cell count. Queue the vampire music. So a transfusion was scheduled for Saturday morning. As anticipated, it helped almost immediately. The "good" news is that the white blood cell count was fine so mom will be in the chemo ward Tuesday for #5. She's been holding up amazingly well, all things considered.

I've already made plans to be back to help her through #6 mid-March.

Dr. C had a substitute, Dr. M, meet with Mom and Sister A on Friday. Sister A liked him. He looked at mom and directed questions to her. He gave them some generic info on radiation therapy and when it might be recommended, but no one wants to get too far ahead of the current process.

For now, it's chemo poisons vs. cheneys and we fervently pray the poison is winning.

back to the bay

I'm passing the baton to Sister A today. She will takeover the care and feeding of mom while I head back home. Yesterday was a tough one physically for mom as she slept most of the day away and struggled with getting anything down. We're going to sit down with her this morning and talk her through the next few days.

Hopefully, she'll be back in the chemo ward next Tuesday for #5.

Sister A has gracefully agreed to keep up the blogging, after reminding me how obnoxious and self-indulgent she finds blogs. Except this one, of course.

ocean vodka - it's organic

Sister A and I drank to mom's health tonight. I highly recommend drinking to mom's health.

‘Ōkole maluna!

the music room

Little E helped with the re-design of the musical notes wall decals in the new lua, that's water closet for those of you with delicate sensibilities. Mom had a very specific vision of how it should look, and it took a while to find the right type of notes to match what mom had in mind. We also went through 3 re-designs before mom was satisfied. Tex, you're off the hook. Doesn't it look good? Makes blowing your own horn take on a whole new meaning.

really hot thighs

This evening after I left the gym a very personable young woman told me, "I just want you to know, your thighs are really hot."

Too bad I was leaving KFC with a bag of chicken.

tuesday sunrise view from the sick room

Excitement reigned as all enjoyed mom's split pea soup with smoked hocks. MmmMMM! Dad had some for breakfast, then topped dinner off with a split pea chaser after work.

Mom promised to make more as I complained about dad's lack of kindergarten sharing etiquette. In fact, Sister A had to rip a piece of crispy fried chicken out of his hand tonight, though he was spared the lecture that Tex and Farmer Boy received after cleaning out the icebox one day.
(View of the sunrise, Hau'ula- Photo: G. Chung)

Mom continues to go through her daily routine of eat, take temperature, weigh in, read, nap, eat, watch sports, nap, eat, take temperature, read nap, eat, well...you get the picture. She also chats with us about subjects trivial and important, exercises (thanks for the bungee Trainer K), putters in the yard for minutes at a time, takes care of business, takes care of her own ablutions, and complains very rarely, usually with a touch of her normal dry humor.

Big E used the word "upbeat" when commenting on the blog. I've been thinking about what that means. I'm not trying for a tone, but of course my personality comes through in my writing. I am trying to report daily life as observed so that our loved ones get a flavor for how mom is doing. It's ironic that the cumulative weight of all the love, care and concern from friends and family can actually become a burden for a sick person if people try to have regular communication.

We've really appreciated the thoughtfulness of all who've understood that mom needs to conserve her strength and avoid germs when her white blood cell count is low.

As far as upbeat goes, I've asked myself if there is a line between living and dying? And when does one become the other? Mom is moving through the world ill and weakened, yet taking pleasure when she's able. She is learning her sick body for the first time in her life. She has started down a path whose distance she can't judge and we can only travel with her part way.

Every day is truly a blessing. She, and we, are rich with the fullness of living in the present, between the mountains and the sea. The sadness underscoring our reason for being together sharply etches our appreciation of the beauty in each moment.

We are blessed with living.

half wrong - taco salad redux

I was sent to Foodland this morning to pick up some items for mom to make split pea soup. "Taco salad" was written clearly on the list. However, the prepared food section did not have "taco salad" and the way the Foodland employee answered my question led me to believe they never carried it.

So, I picked up the ingredients to make it for lunch. Come to find out, mom wanted me to go to the Taco Bell next to Foodland and get the salad. Folks, I don't think I've ever eaten in a Taco Bell in my life. And I sure wouldn't think of salad in the same sentence.

After mom got no taco BELL salad for the 2nd time, AND dad got to gloat about her out-of-character poor communication, she admitted that, if 2 people could have screwed up her request, maybe she was "half wrong."

roll me over with the plovers

(Baby plovers, Hau'ula Photo Credit: G. Chung) Mom and I watched 9 baby plovers eating breakfast this morning.

too beautiful for words

(Photo Credit: G. Chung)

Sunday February 15, 2009

Hau'ula, O'ahu, Hawai'i

back in hau'ula

The brothers kept mom in pretty good shape during my 2-day absence. Dad ran to chinatown to pick up some turkey butts. Yes, mom loves some turkey butts. So does Uncle D. And yours truly. Thankfully, I like all the food that mom does. This means that we do not waste too much, trying to satisfy her whims. I wish I could call them cravings, but her appetite does not rise to that level.

Brother and his family spent the day here. The mini-twins ate squash soup with mom and attempted to feed her. That probably explains why she dropped some weight in the days I was gone.

Mom watched Michelle Wie lose the SBS Open today on the tv-thing. Maybe we can walk it together again next year. You never know.

I'm happy that I will be waking up here.

lpga

Mom and I walked the Turtle Bay course at the annual SBS Open 2 years ago, following some of the top golfers on the women's tour. Lorena waved at me. I found out from a volunteer that they get a free round so my golf buddy J and I vowed to volunteer, watch the pros up close, and get our free round.

Tonight at dinner, Big E suggested I carry mom around the course this Sunday so she can enjoy the last day of the tournament. When I relayed this oh-so realistic suggestion to mom, she reminded me that this tournament is 3 days, not 4.

Does that mean she was actually considering riding around Turtle Bay on my back?

taco salad, not tako salad!

I leave for a couple of days (back in CA on business) and dad screws up lunch. Mom requested a taco salad, something she's had a taste for on and off over the past couple of months. Dad returned home triumphantly with a tako salad, that's squid for all you non-sushi eaters.

Ok, that's an easy mistake to make, esp. in Hawai'i, where tako salads abound.

Dad's brother Uncle D was the main caregiver today in my absence and mom reports that he was a calm and able Gay-substitute, attending to the care and feeding of mom with diligence and patience. Mahalo, Uncle D.

Another good day for mom. Mom's Weather - highs in the 90s, no real lows. Hau'ula Weather - sunny with intermittent thunderstorms.

Roccos Rule!

(Standing L-R: Auntie I, C-hiking buddy last seen being medivac-ed down the mountain with a broken leg, PL-surprise guest and inventor of the "spike" and Auntie C-mom's fellow Michigan State alum and roommate, Seated: mom. Photo used by permission. Photo credit: G Chung)

Mom hostessed 2 surprise visitors today. Auntie I did her best to tickle mom's curiosity during the week by hinting that one visitor in particular would be a BIG surprise. One surprise visitor was C- one of the hiking group who's been on the DL since falling and breaking a leg during a hike, but the BIG surprise was PL.

Earlier this morning, when I was prompting her to guess, mom considered, then discarded one of her earliest sports teammates, PL. PL is a few years older than mom (there is someone in the above photo who is over 80) famously reclusive, preferring her garden to socializing. Back in the day, she was an outstanding volleyball player. Apparently she plays the guitar by ear, too. Geez. I looked for signs of a cape and bullet-proof bracelets, but didn't spot any gaudy insignia.

Talk story time:

To hear the ladies tell it, their volleyball team was a ragtag band that ended up destroying all opponents and winning the league trophy the 2 years it existed. I guess those poor sports at the Outrigger Canoe Club didn't like getting their 'ōkoles whipped by a motley group that had never played together so they took their league away and went home.

Mom's team was the only one with a sponsor, Rocco's Pizza, and of course, no post-game celebration would be complete without pizza and beer. I did the math and no way mom was old enough to be drinking back in the day.

Mom says no other team knew how to spike, that is, until PL and Auntie B rained down the hurt on them. At one point in the story-telling PL hopped up and swung her arm--I can attest to the fact that she's still got the power and the snap.

[Oh, and by the way Big E..I know you think my legs are pretty, but these ladies have some gams on them. Excellent muscle tone. I've got some weight and road-work ahead of me in the next 30 years. Must. Try. Harder]

Mom claims she was a defensive specialist and could get to balls no one else could. In my late teens and early 20s I coached her and various co-ed and womens' teams she played on so this is an easy claim to believe. She makes me look like a wuss. Really.

Soo-ooo, Roccos Ruled! by schooling the other 5 teams in the art of the spike, and also making fun of everyone else behind their backs. Something about a tough team from Kalihi with poor dental care nicknamed the Space Cadets?

a glorious day...

...mom pronounced as we ate our soft-boiled eggs this morning. 3 baby plovers sunned themselves on the beach, oblivious to my picture taking attempts.

We are awaiting 2 mysterious visitors that Auntie I is bringing to visit mom.

Who can it be now?

tired tuesday

Mom was pretty pooped today. We didn't make it to prime rib, but I hold out hope that by the time Sister A gets back next week, we'll be ready for an outing. Today is exactly one week from chemo #4 and her white blood cell count is expected to be at its lowest 7-10 days after treatment.

All in all, this has been the least taxing post chemo week so far. Keeping a journal has been really helpful in keeping perspective, although it's not as useful as a benchmark.

Our new motto:

Stay flexible and maneuver.

mommy moo

Mom actually asked for some fiber today. We buy whole psyllium husks and mix them in juice. I've urged mom to take some every day, but she is resistant and has taken to insisting that we had "negotiated an agreement" that she would only need to take some once a week. I dismissed the imaginary agreement and have gotten her to 3x per week.

After I got mom all set up, I went into the lua to wash up. I heard strange sounds over the noise of the water. Interested, but not alarmed, I peered through the bathroom door. The sounds were emanating from mom. I realized she was moo-ing.

"All I'm eating is grass."

Hmm. Pretty articulate for a cow.

'ōkole-OW

Just a little hawaiian language humor, gentle readers. 'Ōkole is a kind of rude way to refer to the butt, and 'ōkole hao is a liquor distilled from the ti plant. [Lit. iron bottom] This morning Mom woke up with a pain in the rear NOT named Gay. I was sympathetic, but couldn't resist asking her if she wanted some 'ōkole hao for her 'ōkole-OW. She was not amused.

Low brow humor aside, mom was active and eating like a trooper today. We even got outside to prune one of the plumeria trees. Trainer K would have been pleased at the way mom wielded the hedge trimmer to get at some of the higher branches. No need for additional upper arm exercises today.

Around midday I whimsically asked mom if she had thought about what restaurant would be her first stop after she finished chemo and, hopefully, was able to enjoy eating more normally. I thought I might get the gimlet eye or a grimace, instead she surprised me by saying she had been thinking about the prime rib at Lei Lei's Bar & Grill at Turtle Bay Resort.

Caught off guard I asked, "Today?"

She replied casually, "Today or tomorrow."

I got all excited thinking that I would get to eat 1 1/2 prime ribs, but she dashed my hope, mentioning we could share one.

Sometimes you have to make sacrifices in the name of love.

2 views of ka mahina

"Ka pā kōnane a ka mahina." - The moonlight shines brightly.

Same moon, same night.












Lots of visitors today, but mom was up for it.

Our neighbors from the old homestead in Niu Valley stopped by in the morning. Auntie W still lives there with one of her sons and his family.

Later, dad returned with his middle brother Uncle D, visiting from Chicago Park, CA. Mom was relatively peppy today. Compared to last cycle, she's 6 pounds heavier and eating and drinking more.

We're also monitoring her water intake more closely these days. I guess that, along with other things we've added to her routine, including upper arm exercises she specifically asked for, has her calling me and Sister A, Nurse Ratched and Nurse Cratchett.

"If Mrs. C doesn't want to take her medication orally, I'm sure we can arrange that she can have it some other way."

ice cold mom

Little E learned how to give a subcutaneous injection today. She watched me prepare mom's neupogen white blood cell booster and then recited each step after we disposed of the syringe.

I told her she could practice giving the shot with some extra syringes we had on hand. My suggestion that she practice injecting an orange with some vodka we have chilling in the freezer was met with a puzzled look. Organic screwdriver. MmmMmm.

Mom spent part of today on ice. As with the last 2 cycles, her temperature rises during the day and she has to put up with numerous rounds of temperature-taking, urges to "Drink!" and frozen objects arranged all over her body. The magic number is 101.5F. We don't worry as long as we can get her temp moving downward fairly quickly.

By evening she was cooler, feeling better and ready to eat. If this cycle follows the others, this will last for a couple more days.

weeds

Mom is sitting on her rolling stool, earphones on, weeding the yard. She knows that I will be watching her closely, as these next 7-10 days her white blood cell count drops and the chance for an infection increases. She submits to privacy violations such as; increased temperature taking, urgings to drink more liquids, and frequent inquiries as to her pain/nausea/digestion/state of mind, not gracefully, but at least dutifully.

Point of fact, during this long chemo treatment process she's put up with almost as many invasions of privacy as US citizens have suffered under the previous 8 years of the Bush Administration, i.e. daily and relentlessly. Except my violations aren't illegal and anti-constitutional.

I will soon go out and ask her to visualize Whirled Peas.

happy hump day

A few days ago I witnessed this exchange between mom and Tex.

Tex: I was really worried about seeing you for the first time, but I get here and you look good!

Long pause while mom eyes Tex.

Mom: Good for Dachau, Day 12?

tex takes off

I'm leaving shortly to take Tex to the airport. He's been good-natured, not squeamish, diligent, thrifty (that part might not be so healthy) and brave. What a boy scout. He's not a native of Texas though so that state cannot claim him.

Anyways, our Tongan bonecarver neighbor S has already adopted him. Tex may even have gone through a few Tongan marriage ceremonies while he's been here. His wife, D, may (or may not) be surprised to hear that.

Meanwhile, he's taking his last outdoor shower. I will not speculate on how clean he is as the shower is fully exposed and he's not. Thank goodness for small favors.

The Chung family will miss his open heart, sensitivity and handyman skills.

Mahalo and Aloha, Tex.

chemo tuesday-mom all a' bustle

All quiet in the chemo ward today. Of course, no experience at TKO is without gaps in communication. We learned that we are supposed to call in mom's Neupogen (med used to treat neutropenia = low white blood cell count) the day before her chemo. When I asked if we were supposed to get a call from TKO to let us know if mom had been give the green light for treatment, I was told that they only call if the various blood count tests are too low for treatment.

Note to caregivers: always call to confirm

So obvious given the already mediocre communication that we can't rely on TKO calling. In addition, I found out that once Neupogen is started, it's continued throughout the cycle. No one told us that and we could easily have left thinking it wasn't ordered.

What a hole-y patchwork. Really sad because there are only a few dots to be connected and healthcare providers are so entrenched they can't see the potential gaps. How any sick person without an advocate can navigate through any US healthcare system is beyond me.

Mom slept, ate, drank, and read her way through #4. She is not at fighting weight, but has slowly gained some poundage back. She made a determined effort to go into this next round as fit as possible and she succeeded.

We've got some new ideas and meds for the coming week. Maybe we'll get through it with less strain on mom.

Everything crossed.

just say no

Dad and Tex ran errands Sunday before the Superbowl. At some point during the early afternoon, I received a picture on my phone from Tex showing a woman sitting on a lounge chair.

I showed it to mom, saying, "I think dad and Tex found some reclining chairs for the living room. Mom took a look and then turned her back saying, "It must be a joke."

When the errand boys returned they convinced me the chairs might fit well with the new decor. But when asked where the chairs were, they both replied they were scared to buy them without a thumbs up from mom.

I went upstairs and told mom the menfolk were excited about the recliners they found but were scared of her and asked if it bothered her.

Reply--"No."

tennis, anyone?

Mom and I stayed up into the wee hours Sunday to watch the Australian Open men's final. Mom's version of watching was to sit in her fold-out sports chair, bent over with her eyes closed. I would periodically rouse her and tell her to watch a replay of an amazing exchange or ask her if she wanted to get onto the bed and she would say, "No, because then I'll really go to sleep."

By the 5th set we were both wide awake to watch Rafa Nadal win his 1st hard court major. That last set was a lesson in focus of intent to the exclusion of physical discomfort, environment, and the other guy across the net, who may just be one of the greatest tennis players of all time. My take-away was that a great competitor beat a great artist and comparisons don't apply, but sports fans reap the benefit of one of the great rivalries of the current generation. Wow.

Long-time friends and family know which player mom most closely resembles. Hint: not the artist.

mom looking good

I believe I understand our loved ones' anxiety in not being able to see mom on a regular basis. Coming back after 3 weeks had me a bit tense in anticipation of what I would find. I knew that she was being well-cared for and was in her "best" week post chemo, never-the-less, the tension is there.

So it was with great relief that I could see that she kept her weight up and has been getting about. The beautiful weather has apparently lured her to walks on her beloved beach.

Thank yous to Sister A, dad, and Tex.

More on the return of orneriness tomorrow.