The long road...

Jrex is home again. There's no change in his Dad's status. He's still non-responsive. The social worker called Jrex yesterday to ask the family to visit three nursing homes and select the one they want. Which made his Mom really start facing reality. She's been hoping and praying for a miracle (understandably). Their whole church has been as well. Yet she knows that Dad never, ever wanted to be in a nursing home.

So, we're coming toward the hard choices. He's on a vent and doesn't seem to do well off of it, so that may be 'option 3'. In New York State, where they live, if someone is put on a permanent feeding tube, it takes a court order for them to be taken off of it. I doubt she could ever allow that anyway.

So, Jrex came home. His sister will fly back on Monday for a week. Then Jrex flies back out for another week and a half. We talked last night about me flying out when/if they make the decision to take Dad off the vent. It will likely take 24 to 48-hours from that point. I could say goodbye and be there for his Mom during those last few difficult days of waiting. I remember from my Mom, those were the hardest days. No movement. The breaths coming after agonizing seconds of silence. Was that it? The LAST breath? Oh, she breathed again. Over and over and over.

When I spoke with my aunts last weekend, Aunt Gemstone told me that my grandmother actually went through a similar dying process as FIL. Grandma fell and hit her head. They flew her to the city to stop the head-bleed. Then she was in and out of a coma for the next three months. She had a series of strokes that meant she was mostly in the coma until she also became non-responsive. My aunts actually had to make the decision to withdraw care (no food or water. Just wet the lips and allow the dying process to occur). It took 12 days! (Grandma was a heavy woman so it took a while for the body to be depleted). Ugh. Definitely not something I can imagine Mom K being able to handle.

On a purely selfish level, it's SO good to have him home. To chatter happily about nothingness. On the phone long-distance, we've joked a bit, but it's obviously usually been serious content.

This weekend, I've actually got work to do! Blech. The hope is that I can drop him off to watch Harry Potter (which I watched with Science Editor, aka The Lizard, the other weekend). That buys me three hours to work here in the office. Then we're hoping to eat at a local Turkish restaurant for my belated birthday.

It's always strange when death and ongoing life butt against each other so closely. Of course the reality is they always do, but it's rare our eyes are open to see it.

Hug the people you love and enjoy them while you have them.

Etc.

I actually have a couple deadlines this week, so no time for a coherent post. Quick notes/thoughts:

-Jrex comes home on Thursday for a couple weeks. No change in FIL, he's still not responsive, but the family is waiting a couple more weeks before making any big decisions. Mom K is calmer and even starting to talk about what to do after Dad dies. Since visitors don't affect Dad anymore, they've been allowing people to come by. Jrex has been surprised how many people have wanted to pay their respects, not just for Mom's sake, but for Dad's. Apparently there's a 15-year old girl in the church who really loves him and it's mutual. She came by with a teddy bear and balloons. A pharmacist Dad's known for years stopped by and had tears in his eyes. Jrex has been amazed and touched by how deeply the people in the church care for both Mom and Dad. The pastor and his wife have visited every single day.

-Family reunion was in Milwaulkee this past weekend. I didn't get to go, but I did call one of my aunts, who then passed the phone to three of my other aunts who were in the car with her. Made me miss them even more.

-Today is my birthday and I thought I'd be really depressed without Jrex. I am sad, but he sent a card that arrived last night. Aunt Bird and OTRmama also sent cards. So, this morning I did a birthday breakfast before work and opened my cards. I felt very loved. I'm supposed to go out with coworkers today for drinks (we're all swamped though, so I don't think it will actually happen). Then, tonight, Smart Girl is taking me out to a fondue place. She's bringing wine and we'll have a great time. I've wanted to do fondue since we moved here, but Jrex isn't into it, so not having him here is working out fine! (ha--believe that and I'll sell you a bridge in NYC.)

Time

Yesterday morning as I prayed for Jrex and his family, I started to pray that the Lord would take Dad home. I got a nauseous feeling in my stomach. This has happened to me before and is usually an indication I'm heading off 'the path'. So I stopped and asked, "What are You doing then?"

I didn't hear a voice, no thunder or anything, but I got a quiet sense that He wanted me to know, "[Mom K] isn't ready yet. I'm giving her a little more time." Not the sense that He won't take Dad home, but to not yet actively pray for the end. I shared that with Jrex last night and we prayed together for Mom to hear what she needs to hear in order to be able to let Dad go.

It turned out their meeting with the medical team was today, not yesterday. I thought they'd be sending him off to a nursing home asap pending the outcome of the discussion. They will be sending him to a lower level of care (not in the SICU anymore), they will be putting in a feeding tube, but it's not quite a nursing home yet. Jrex asked about withdrawing care, but they said that it's too soon to tell if his brain is truly gone. They want to wait 2-3 weeks and then do an EEG to check for brain function.

At the moment, Dad has pneumonia, which could be impacting him. As a 75 year old in a coma for two-weeks, the likelihood of him sitting up and getting out of bed, even if he recovers brain function are slim to none. Jrex is trying to get Mom to opt for a DNI order (Do Not Intubate). She's signed the DNR (Do Not Resucitate; ie don't bring back from heart failure). Due to the pnuemonia, they'll likely have to put him back on a vent. (He's been off it the past three days and was breathing on his own.) Jrex's sister tried to get Mom to consider, "It would be easier to choose not to put him on the vent than it would be to choose to turn it off." Mom said she'd think about it, but I can tell she's just not ready for it.

One moral of this story is to put any of your end of life choices in writing. Dad said no tubes, no extraordinary measures, he told Mom he didn't want her making decisions he wanted Jrex (Dad knew it would be too emotional for her), but none of it is in writing. So here we wait.

Jrex's sister had another dream two nights ago. With reluctance she told Jrex she'd dreamt they got a call in the middle of the night that Dad was gone. Jrex told her that was his hope. I do think that will happen, but I don't think it will be in the next couple of days.

Mom is being given the gift of time.

The contrast experience brings

Jrex has seen a lot of death. Part of what makes him an amazing oncologist is that he's not afraid of it. In fact, part of his mission is to help individuals and families experience a 'good death'. What makes a good death? Acceptance. Saying farewell. Tying up loose ends. Meeting death with dignity (and even humor). We will all go into that good night. While there are definitely times to 'rage against the dying of the light', there are also times to say au revoir and lovingly send one's loved one ahead.

Jrex has seen that farewell coming for the last four days. Dad K's developed clots in his arm, which means a week after a head bleed, he's on anti-coagulants. So, either the clot gets loose and shoots into his lung (which could kill him) or he gets another head bleed (which would further incapacitate whatever's left of his brain function). Over the weekend, what responses FIL had have diminished. He's not turning toward voices. When Jrex lifts the eyelids, FIL's pupils are barely responding to light. If his foot is tickled, he doesn't pull away. He's going. Jrex has NOT told his mother or his sister what he knows.

In fact, three days ago, his sister YJ had a dream in which she saw FIL's spirit leaving his body and being pulled back over and over. She told Jrex about it. He heard that and thought, 'we need to let him go', while his sister said, "We're not doing enough to keep him here."

However, due to the miracles of modern medicine, we are at a horrifying juncture. They've taken him off the vent, but he's breathing on his own. He's fed through a tube for now. Two years ago, FIL specifically told Jrex he didn't want to linger on if there was no hope of recovery. The doctors have initiated a family meeting for tomorrow to discuss options. At the moment, Jrex sees two. Option 1: move what is left of FIL into a nursing home and wait untold days, weeks, months, years? What that theoretically allows is time for God to do a miracle. Option 2: make him comfortable. Wet his mouth so he doesn't feel thirsty, but let him go. Which could take three days or more.

I told him there's no way his Mom is ready for Option 2. I think it's what his Dad would prefer, but there's no way she could let that happen.

I just called him and he said they were in the hospital but he was really happy I'd given him a reason to leave the room. "What happened?!"

"Mom turned to me and said, 'He doesn't look good. He's getting worse right?' I told her yes. Then she asked, 'Is he going to make it?' and I said, 'I don't think so'. And then she started crying and calling his name and telling him we all want to see him. Don't go. Don't leave us. It is heartbreaking and I just couldn't be there anymore."

I don't want Dad K to not be here, but I don't want him to be held here when I know that we're holding him back from the presence of Joy. My prayer had become for total healing or total freedom. Now I'm asking that if the Lord isn't healing Dad K, that He would truly take him. Give us Option 3.

That Dad K may go gently into that good night. That Jrex would not be seen as the bad guy just because he's not fighting death. That Mom K would be able to say au revoir.
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...

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

—Dylan Thomas

This is SO embarrassing

I knew the company-wide "T0wn Ha11" meeting was today, so I dressed carefully and actually blow-dried my hair. I had trouble finding motivation to leave the house. The last couple weeks I haven't had much to do at work, and it's hard to make myself rush in just to sit around surfing the net. (yeah yeah, feast or famine, always complaining, I hear you say...)

Then I remembered the meeting was scheduled for the morning not the afternoon. I figured they would start at 10 AM since no one in our office gets here by 9 AM. Promptly at 10, I snuck in the back door and saw everyone already sitting in the lobby. Oops. I tossed my bag into my cubicle and then quickly and quietly slid in to sit by one of my fellow designers.

They were already at the "pengu1n awrds" (which happen at the end). Big OOPS. They'd given two of three away already. In recognition "For Outstanding Performance and Lasting Contribution", they pass out a $100 gift certificate, a plaque and a huge stuffed pengu1n. They called up the last presenter and my Creative Director walked to the front of the room. I got nervous.

"If I use a pronoun, you'll all know immediately who this person is, so I'm not going to try for surprise..." (I'm the only woman in our department, so I knew it was me as he said that.) "In the past four months, we've had a demanding client, tight deadlines and many, many deliverables. OTRgirl managed this whole project, including four designers in Detro1t and two freelancers here. She kept this whole juggernaut rolling and I was amazed how few times she had to call on me for any help. We're proud to have her in the department and wanted to recognize all her hard work and success."

I was blushing as I went up to get a hug from him. I started to drag off the pengu1n (it's heavy!) and everyone called out, "Speech!"

I turned back into fifty staring eyes, blushed a little more and stammered, "Phew. Thank you. I'm not at all sure what to say." I saw the account lead who'd shepherded us all through this whole process. She looked wistful and sad (since this year's show was the final one), so I continued, "I have to say it was an honor to be part of this project. We had a great team with a lot of mutual respect. I really enjoyed working with each of you. As usual, we can say we survived." (laughter) "I look forward to seeing what comes next." (The client's company was officially sold to The Evil Empire yesterday) I then shuffled back to my chair dragging the penguin by the head while clutching the plaque.

I sat down next to my Creative Director. I leaned over and said, "I thought this started at 10!" He laughed and said, "I was starting to get really nervous! Especially cause this isn't like you. Thank God you came in when you did!"

Last year I was a little hurt that I didn't get the award. This year I didn't expect it at all (since I WAS gone for a few weeks of the process).

That'll learn me to not be late for work...

Ignorance IS bliss

Sometimes it would be nice to be ignorant.

I don't like knowing it's July, and therefore all the first-year residents in hospitals around the country are fresh out of med school.

I don't like knowing that Dad K is in a Surgical Intensive Care Unit (SICU). (As in "Sick You") I'm married to an Internal Medicine veteran who's told me plenty of stories of post-surgery mishandling by SICU's. He's 80-85% happy with his father's treatment, but we'd both feel better if he were in a MICU instead (Medical . . . ).

I don't like that it took Jrex talking to three nurses, two residents and a senior resident before the vent settings and meds were adjusted for the fact that Dad K was a heavy smoker.

I don't like hearing from my coworker who just stopped his smoking habit that he had HORRIBLE nightmares for three weeks. And he was on a nicotine patch. So . . . Dad K is in a coma stuck with whatever is happening in his body as he goes through withdrawal.

I don't like waiting for his condition to change for the better and not knowing when it will happen. I don't like not knowing what the 'new normal' will look like. I don't like not knowing when my hubby will be home again.

I do like that when I spend time with the Lord, I can wash away all these concerns. I can lay them at his feet (an often loud, tear-filled process) and receive peace in exchange. I can know that no matter what it all looks like, there's someone besides me in control, and even when he does things differently than I might suggest, somehow it WILL work out for the best.

I just wish it didn't take me so long to get to the time with the Lord. It's like an old song says, "Oh what peace we often forfeit, oh what needless pain we bear, all because we do not carry, everything to God in prayer." (Picture old ladies with German accents, large black women with gold teeth, and a skinny little white girl swaying back and forth as they sing)

The Waiting Game

My FIL has still not regained consciousness, but he's moving on both sides of his body. He had a big bleed on the left side of his brain, so they worried about stroke-like damage to the right side of his body, but he's moving those limbs. Jrex said that without waking up, and while still on the vent, Dad K kept trying to put his legs over the bed rails to get up. He turned his head at the sound of Mom's voice. All are really good signs. He is breathing a bit on his own, despite the vent. They hope to wean him off relatively soon.

That's the good news.

Ready for the bizarre medical trivia? This is kinda gross, so you might want to skip to the next paragraph... So. They removed part of Dad K's skull to relieve pressure from his brain swelling. In hopes of reinstalling the skull bone, they need to store it somewhere. Guess where they keep it? Graceful, who is a rehab doc, answered, "In the tissue bank. Right?" No. They put it into his abdominal muscles to keep the cells alive. Jrex thought that would only be for a month or two at the most, but they just told him it might be for 4-5 months. Which gave us a glimpse at how long and slow this process might be...

Jrex and his sister know they'll remain until at least Wednesday. That's when his Mom goes to the eye doctor to have her stitches removed. She had glaucoma surgery two days before Dad's fall. She can't see for crap out of her one eye and was under strict orders to rest for two weeks so the second eye would heal better than the first one did. Depending on Wednesday's exam, Jrex will know if he needs to stay another week to support his Mom if she still can't drive or cook or read or do anything visually based.

Which has HUGE implications. Mom K can't deal with the whole house by herself. Dad K might need to be in a rehab facility for a while. They have a ton of stairs just to get to their living quarters. My father reminded me not to jump bridges before I come to them, but Jrex and I can't help thinking about all the possibilities. Do they sell the house and move to LA to be near their daughter while Dad K recovers? Do Jrex and YJ take turns flying to New York throughout this process? For how long? As Jrex said, if this was happening locally, he could be in lab most of the day at this point and check in during evening visiting hours (during the day, the ICU only allows visitors from 11:30-12 noon). As it is, Jrex's life is on hold with little hope of any sudden, rapid changes in his father's status.

As for me, I'm doing fine overall. That said, I've realized all my single friends are right and being on your own does kinda suck. I've had lots of phone calls, lots of stuff to do, but it's really hard to go to sleep. It's hard to not have someone there in the quiet hours. No quantities of friends or phone calls replace the one best friend. Sigh. It might not be so bad if I didn't have 12 years of habits and emotional enmeshment with one other person, but it's not so fun.

Thank you all for your kind words, thoughts and prayers. It has helped to feel surrounded by so much care and concern.

This really sucks

Dad K, my FIL, fell off a ladder this morning and hit his head on concrete. He just got out of surgery to relieve pressure from the resulting head bleed. He's on a vent and has yet to truly regain consciousness. The next couple days are crucial. Jrex and his sister are jetting across the country to be with Mom K. I'm glad they'll have each other as they wade through the morass of medical decisions and implications. They really are the classic Asian Kid Double Threat: doctor and lawyer to the rescue.

My thoughts are all over the place.

-Dad K drove us nuts on this last visit. I DON'T want that as my final memory of him. Beneath his obliviousness, he could be surprisingly kind and generous and I'd like to collect a few more of those memories. He truly had been changed by his encounter with Jesus over 20 years ago and became a gruff man capable of gentleness (rather than a furious man with just enough control to not hit a wife or child). He hand-copied the ENTIRE Bible over the last two years and had just started on his second round. As much as I wouldn't trust him to babysit if we ever have kids, I want him there to meet another grandchild.

-However, IF he won't fully recover, it's better if this is the end. He is an impatient man who needs to move and DO things. If he's bedridden but alert, we would all suffer, him most of all. He made that clear a couple years ago to Jrex: no heroic measures. No long-term nursing care. Quick is better than lingering.

What's really strange is that we've expected him to get sick for a long time. This is just too sudden and too extreme. It feels like someone gave us the wrong script, but then, I'm sure that's the way it feels with any sudden accident.

Let's talk about race, baby.

My climbing partner, Graceful, is Chinese-American. I've discussed her marriage before. As she put it, our climbing sessions have become Steel Magnolias with climbing as the activity rather than a hair salon. In the course of our rambling chats, we've often discussed race and cross-cultural relationships. Her light-skinned 'black' husband identifies himself as Caucasian since he was raised by a white mother.

Monday night as we cleaned up after climbing, we had an interesting interchange:

I'd asked how Double Name is doing in school (he's in college in Florida, which is why Graceful has so much time to climb). She said, "He says he's doing ok."

I laughed, "Ask him if he's doing 'Asian ok' or 'Caucasian ok'; since 'Caucasian OK' is B's and C's and 'Asian OK' is A-'s"

She grinned, but also looked chagrined, "Not A-, really A's and not A+ is 'Asian OK'." She smiled as she went on, "I really should ask him that! He'd laugh. We've talked a lot about the fact that Asian parents are better at getting their kids to excel in school and that Asians tend to be much more intense about cleaning. He's challenged me to not impose those on him without us talking them through."

I nodded, "You're so right." Then something hit me, "However! There's something Caucasian parents do MUCH better than Asians."

She looked intrigued. I continued, "Caucasian children usually feel loved for who they are."
Graceful nodded, "That IS true." Then I thought about stories of hardship that Double Name has endured, "Unfortunately for Double Name, he didn't even get that perk from having a Caucasian parent..."

We both really enjoy analyzing behavior and patterns, so for us, we loved that conversation. Some of the other women in the locker room looked a little confused though...

Busy, busy or How to See the Golden Bridge more than you ever wanted to in one weekend.

Friday was our official holiday.

A couple of months ago, Smart Girl and I made a list of adventures we wanted to do in the area. One of the items on our list was to hike or bike on Angel Island.

At 9:30 AM, Smart Girl and her husband, Mac Engineer picked us up. We tried to zip through San Francisco, but were trapped in an hour of stop and go traffic getting over the Golden Gate bridge. Which meant we arrived five minutes too late for the ferry from Tiburon to Angel Island. Knowing we had to wait 2 hours for the next one, we schlepped our picnic over to park next to the harbor. That turned out to be the perfect way to do it, cause then we didn't have to hike with picnic stuff.

Angel Island is the 'Ellis Island' of the west. From 1900 to 1940 the US did NOT want to admit Chinese and other Asian immigrants. Anyone who didn't have papers or a first class ticket was detained on Angel Island for 2-6 months before processing or deportation. The men were separated from their wives and children. All were kept inside overcrowded, dirty rooms (who wants to live in the third bunk? Anyone?). There was a European exercise area where whites were allowed to play baseball and hang out, vs the Asian area where they weren't allowed outside. You can see the male detention center below:
In my usual fashion, I made a really bad joke. Jrex and I tease around the edges of racial comments all the time. We're both comfortable with it, but we keep forgetting that other people may not be! Jrex was sitting on a wall in front of the Asian detention center and I took a picture of him while exclaiming, "Look, I brought my very own Asian for photos on Angel Island. I like to bring props for photo shoots." Jrex gave me his famous KDS (Korean Death Stare) while Mac Engineer just looked uncomfortable. . . . oops.

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Saturday we picked up an Afghan woman for another day trip. One of my college friends, Big Heart has been living there for the past 5 years (check out his website: marigoldfund.org). He called to let me know a girl from his village was over here studying for the summer. Well, turns out she and her family are highly educated and mostly lived in Kabul with exceptions when the fighting was bad. Her English was excellent even though she's only been in the US for one year.

We asked her if she had anything she really wanted to see in San Francisco. Apparently, even as a child in Afghanistan, she wanted to go to San Francisco, particulary to the Golden Gate bridge. Back we went over the Golden Gate. There's a viewing platform on the other side and you can walk out onto the bridge. She was SO happy to be there.
Then she said she'd never been to the beach. At first we just watched as she played in the waves. After our picnic lunch, I went with her to dance on the edges of the tide. Our pants got soaked. I asked if she'd ever built a sand castle; she had no idea what I was talking about. So I showed her the basics and she had a great time.
We drove around the city to take in the sights, stopped in Chinatown, then dropped Jrex off to take the train home (so he could be with the mutt during the fireworks--she freaks out). Then I took her over to Berkeley for the fireworks on the pier. It was FREEZING!!!
The breeze blew straight from the Pacific through the Golden Gate and over the Bay to our faces. We both had scarves and ended up wearing them hijab style to stay warm. I definitely got some funny looks, but she was very happy to wear her hijab. She asked me to take pictures so she could send them to her mother.
Interesting trivia: she's from the Uzbek tribe, which is closely tied culturally with Arabs and Turks. The Taliban are Pashtuns, so their reign was not just religious oppression, but a reflection of tribal war.

Home by midnight.

Sunday? I collapsed and stayed in bed most of the day. I think I've become an introvert.