The best part of Wednesday was definitely having dinner with Oakley.
Since Brandon is out of town and doesn't like Indian food, we ate Indian food at Bukhara in Huntington Beach. Like I said before, Oakley's mom is sick like Justin's--and both of them, the kids, have said, "And she didn't even talk to me!" As if the children of these women hold a special power to make the dying speak.
As usual with Oaks, we spent part of the time talking about death and dying and part of the time shooting the breeze and actively forgetting about what we weren't talking about. Their moms have been sick for years. Cancer and its friends surgery, IVs, chemotherapy and radiation are all part of a gang that jumps people in for life.
So, here are the Oak'ism topics for the night: roller coasters and funerary arrangements.
Oakley is Thai, her family is Buddhist, and so is she, though she went to Catholic school in Thailand and did high school, college and her Masters degree in the United States. On the way to the restaurant we were talking about various aspects of cremation and burial.
Justin and I had just spent a couple of hours at his mom's house talking over hospice arrangements for Toni with Mark, my mom, Dorothy and Laura (Mark's mom and sister--Toni's caregivers). Laura held Dorothy's amplifier up for her--it's like a Walkman headset attached to a little device that picks up all the sound in the room. Everyone was talking at once and Justin cracked his knuckles until she scolded, "Stop cracking your knuckles!" My mom and Justin both laughed and thought she was being maternal--my mom and Toni both always told us not to do that, but Dorothy's amplifier picks up the little sounds (like the dog's claws on the hardwood floor, the rustling of paper and the cracking of knuckles) more strongly than anything else. Justin was torturing her with the popping sound.
Part way through the conversation we explained that one of the options was to put Toni on a bunch of machines--a feeding tube, ventilator, etc. but that her quality of life would not improve; it would just keep her in the same condition she is in now for longer.
"I don't want any of that!" Dorothy piped up.
We all just kind of looked at her like, huh? And then we started laughing. Mark said, "OK. Maybe we can get a two-fer. We can put both of you in there together."
"Maybe they have family packages."
"Buy one, get one free. Or half-price."
"Like you can buy a family grave plot..."
Oakley started telling us about cremation being required in her religion. She tried to explain that the length of the grieving time varied based on if it were an expected death or an accidental or sudden death--one of them involved a 7-9 day funeral and prayer time, and one was for five days. Something about the spirit and resting or being freed or something like that. She remembers that for her grandmother's funeral (a princess's funeral, which she attended when she and her brothers were kids) part of the ritual included pouring water over the hands of the dead and saying a prayer--all the grown ups see the whole body but for the kids they put up a screen, so all the kids see is the hands.
I used to always think I wanted to be buried in a coffin. But the more I think about it all--the Earth, our resources, my body, ashes to ashes v. my fear of bugs and small spaces.... I'm starting to be more in favor of cremation, were I to die now I'd say go for the cremation. And even though I edited an article about urns as art and I know people who even keep their pets' ashes in urns, I want to be scattered in the ocean. So does Justin, and since he's not allowed to die before I do... We'll need to think this through and work something out about the timing. Neither one of us would do any good without each other.
Then, during dinner, we started talking about roller coasters. I'm pretty sure they came up in conversation because Toni is in a facility across the street from Knott's Berry Farm.
Justin and I LOVE roller coasters. When we first realized where we were, we thought maybe we'd go to the first family meeting and then get the evening rate for the park. Of course, before the first visit was over we realized there would be no amusement park mood--and with all the new roller coasters the evening rates were a thing of the past.
We are old.
So Oaks said, "I've been on a coaster, but I've never rolled."
We just looked at her and laughed. Oaks has a degree in Communications, but English is not her first language--and even if it were it would be English English, not American English, so she always manages to communicate her point, but often uses a unique combination of words. Or she makes up words. This is another thing I love about her. Turns out she meant that she has been on the kind of coaster that goes up and down big hills, but not the kind that goes upside down--or, rolls over. It's her fear of heights and falling that gets in the way.
"I'm sorry. We shouldn't be laughing," she said at one point.
"No way!," I said. "Are you kidding me? These have been the best 60 or so seconds of the day!"
I told her that I'd been using her word alcoholized at work lately. It's when you're a little tipsy, but not yet drunk. I figured in exchange for borrow babies and borrow puppies it was a fair trade.
Then Justin and I went to my parents' house and slept until about 10 a.m. I of course spent some of those hours reading by very dim light shining through the window--it reminded me of hiding under the covers with a flashlight so I could read at night without getting caught. Then, when they took the flashlight away I read by the light of my clock radio. What can I say... I'm obsessed. But now I'm also old, and soon I got tired again and went back to sleep.
Today we visited Toni and had the meeting with the hospice workers. We thought it might be the following week, but the agency called before we even left Mark's house last night. That's why we ended up spending the night--and cancelling our San Diego life for Thursday too. The nurse and social worker were very nice and comforting even to us, and are going to do a home visit on Tuesday to check on the situation and caregivers before any decisions are made.
This is what blew us all away: 7 to 10 days.
We knew that she wouldn't have the feeding tube through her nose when she left the facility. I thought it was because it's not comfortable or healthy to have for too long--it goes into both nostrils and lets liquid nutrients and medication drip down into her esophagus. I imagine that such a thing would eventually cause a lot of wear and tear on a person's insides, which is why they are temporary until they are not needed or are replaced by a tube that goes directly into the belly from the, well, belly area. But she can't have that at home because it's a liability to everyone--if it moves it could go into her lungs; there has to be a certified person there all the time to use one of those. Plus since it's not comfortable, it's contradictory to the concept of comfort care.
Problem is, removing the tube removes the hydration. Turns out letting a person dry up but keeping her mouth comfortably moist (so her lips aren't dry and cracking and so she feels OK) is actually a really good idea. It eliminates, well, the problem of elimination; so her sores from that will be relieved, plus her choking cough will decrease because there won't be so much to choke on and apparently it's a more comfortable way to go.
It also seems fair to the patient--I mean, it really speeds things up (think of all the protesters in jails or elsewhere who go on hunger strikes but still drink water--they can strike for AGES and they don't die, they make whatever point they want to make and then start eating again). But to keep hydrating someone who is sick of/from living would just prolong her suffering.
But seven to ten days. We can look at our calendars and plot. Approximate. Heck, might as well take bets. Lori and Adam are doing it for the birth date of their June baby...
1) This weekend is Arman's bachelor party.
2) Next weekend is Jason's bachelor party.
3) Then there's a freebie.
4) Then it's Jason's wedding.
5) Then it's Arman's wedding.
6) Then we're going on our road trip to New Mexico with Brandon and Oakley to visit his family.
1.5) Justin starts inpatient pediatrics rotation.
2.5) Justin takes his clinical examination exam.
3.5) Justin prepares for the national shelf and board exams.
3.7) Justin takes his primary care shelf exam.
4.5) Justin takes his pediatrics shelf exam.
5.5) Justin takes his Step Two Part 1 test in LA.
7.5) Justin takes his Step Two Part 2 test.
Seven to ten days. The hospice people say they can tell when a person is coming to her last day or hours, that they can call the family to gather around.
But all the fertility books said you can predict when you are likely to conceive and I know it's all just about averages. There's no way of knowing exactly when anything will happen. There's no way to say, "Let's keep feeding her until after Justin's 33rd birthday or Jason's wedding or at least one test...." That would be cruel and unusual. That would be selfish. That would be silly, because waiting until the perfect day to take the feeding tube out does not perfectly predict the day of death, which will never be perfect anyway.
So I suppose all we can really consider is: How soon can we make her more comfortable than she is right now? How soon can we give her the one thing she has been asking for consistently for the past 26 days--to go home? How soon can we let go of someone we have already given permission to "let go"?