MishMath

I told the story of my wife's death once, but in a mostly big-picture sense. Now my compulsion to write has me scrutinizing the details—augmenting my fickle memory with texts, emails, and medical records.

[Crowfoot, 19th century Blackfoot Chief]
What is life?
It is the flash of a firefly in the night.
It is the breath of a buffalo in the wintertime.
It is the little shadow which runs across the grass and loses itself in the sunset.

[Note: I have never laugh-cried so much as I did while writing this, so don't feel bad if you think something is funny. Even if it's also awful.]

I think about shit, then I torture my therapist with anguished emails detailing my thoughts. On November 15, 2018, my wife wrote me, in secret, what can only be called a 'goodbye' letter. It's a little strange for me to note the anniversary of this event, because I didn't even know it happened until nearly 3 months later. But it's always haunted me how early she wrote it, so for the third anniversary I did something different: I stopped thinking so much about the letter itself. Instead, I thought about her sitting down to write it, and I wondered: What was happening that day? What were the two of us thinking about at the time? So, I scrolled back through our text messages, and then, of course, wrote to my therapist. I was pleased with that email (i.e., I cried), so I started to expand the concept across our final four months together. And that's how all of this happened…

October 10 (our anniversary)

I don't remember exactly when it started—partly because she concealed it from me when she could—but as 2018 flowed from summer into autumn, she began experiencing random bouts of pain, nausea, and diarrhea, plus fluctuations in weight and stamina. It's obvious, now, all in one sentence, but they came on slowly, and they were mostly fairly mild, so it wasn't as distressing as it probably should have been.

As this photo from our anniversary shows (even in backlight), she was outwardly healthy. We went to our favorite place on Maui, and for four days we snorkeled, kayaked, ate, and drank as much as we could handle. I don't think we'd have changed a thing, even if we'd known it was our last trip.

When that photo was taken, she had 119 days to live.

November 7-8

October trudged into November. She continued to experience intermittent problems and looked forward to seeing the doctor. She went on the 7th and texted me afterwards:

Waited nearly an hour for the doctor. He sent me for labs. And he wanted a CT. I didn't have to ask.			9:56 AM
Nurse hugged me after I told her back pain etc
Uh oh
They didn't make me feel better.

"Uh oh" indeed.

She went for the blood work when she left the doctor's office. The test (nicknamed CA19-9) measures pancreatic cancer antigen levels. For three years, her tests had never been higher than 20. We got the results early the next morning: 166.

I remember we weren't surprised, given what she'd been experiencing, but we were stunned (even after so much shit has happened to you, there's still a tendency to think that this shit won't really happen to you). However, CA19-9 values can reach the thousands, so while 166 was elevated, it wasn't necessarily alarming. Plus, there was a faint hope we could cling to: The Anomaly Factor. So I went to work, and I texted her later, a message I call "Man Grasps At Straws":

	I don't want to be stupid, but is there any chance that the test result is affected by the new enzyme thing you're taking?		7:52 AM
You never know. I'll check.			7:57 AM
😘 😍

I don't remember the name of the "enzyme thing", just that it was another piece of the great irony of her abbreviated life: that she never stopped trying to live healthier. The answer to my desperate question was "no", of course, but what strikes me is her cheerfulness—even if she was just posturing for my benefit.

Her positive attitude would not save her, however. She had 90 days to live.

November 13-15

The 13th was a Tuesday; we were still figuring out how to feel and behave:

What a beeeautiful day! 🌈 😍			11:57 AM
	I think I know what you're trying to do.
?
	Cheer me up.
No. You're entitled to feel sad.
If I can help- I will. But feeling down is … natural. 😍 😍 😍			12:00 PM

She had a phone call at noon with her business partner (and long-time friend). Afterwards:

	How's Mike?		1:47 PM
He's okay. Because I'm ok.
	Ok. I'm sorry I'm not. Maybe tomorrow will be better.
Don't apologize! You have the much harder job. Don't add to your suffering by feeling bad about feeling bad. I'd be inconsolable if the tables were turned.			1:50 PM
I love you so much. 💓 💕 💜 😘 😍
We got ribs for dinner.			2:04 PM

I love you, too. Ribs sounds good.

*     *     *

Wednesday; a week since she saw the doctor, but the CT hadn't been done:

	Let me know what happens with the CT.		8:20 AM
Working w doctor's office now			8:37 AM
On hold, Izzy came on - "I saw you in my dreams, we were walking hand in hand, on a white sandy beach of Hawaii…" and I started to cry.
I could barely talk to doctor's office. 🤪
Still trying to make this happen			9:22 AM
[Note: "Izzy" is Israel Kamakawiwo'ole, the legendary Hawaiian singer, our favorite music to listen to when we were cooking.]

After some wrangling and (of course) waiting:

They can do it today. I have to be there at 3:30.			11:56 AM
Trying not to be scared			12:01 PM

I'd like to say "don't be scared", my love, but I can't.

When will you be home?			12:03 PM
	1:30 to 2:00.		12:05 PM

Like the wonderful husband that I am, I was home in plenty of time. Unfortunately:

	This is so wrong.		3:17 PM
You were snoring			3:32 PM
💤 😆 😆 😆

So… yeah, I came home and promptly fell asleep. She elected not to wake me and went by herself to get the CT. I'll blame stress for my exhaustion and try not to feel too bad about it now, 3 years later.

*     *     *

Thursday morning, she got the CT report.

Other than some fluid in my lungs- nothing			8:29 AM
	Ok. So the lesser of 2 evils. Now we wait til tomorrow to find out what's next, I guess?		8:35 AM
Yup. Death not imminent. 😜			8:42 AM
[Note: The greater of 2 evils would have been finding obvious metastatic disease; the lesser was finding (almost) nothing, and still being in the dark. The dark is scary.]

	I'm so happy I took tomorrow off. I need to just lay in bed, or something.		9:10 AM
I hear you. I told Mike I could work now. But I'm having my shake, looking out the window, and musing over what's changed.			9:12 AM
	I don't want to borrow trouble, but are we worried about fluid in the lungs?		9:12 AM
Well don't worry yet. Could be left over from my cold.
No matter what this buys us time. 💕 🌈 🏝			9:14 AM

Does it?

I looked up the lung issue. Could be nothing. Could be bad. Biopsy is necessary.			9:35 AM
	Christ. Ok.		9:37 AM
I'm scared			9:51 AM

I know, baby; I am too.

I believe that was the last time she indicated fear, in any way.

*     *     *

Meanwhile... we've reached November 15th, the day she wrote her 'goodbye' letter. She saved it to the desktop on her computer, where I could easily find it. According to the file properties, it was created at 7:45 AM, which means she started when I left for work. Twelve minutes after she texted "I'm scared", she made the final edit. It was titled "I am here" and addressed to me, to be discovered and read after her death.

*     *     *

We texted again at lunchtime:

I feel a little better now. 👍 😍			12:09 PM
Outlook hasn't changed but I'm recovering from the whiplash
It's only a small pleural effusion. That has to help right?			12:12 PM
In other cancers p.e. marks the end. But I don't feel like it's the end.
	So it could be metastatic indicator.		12:16 PM
Well 40% of the time it's cancer metastasis. It could be from my cold (ie pneumonia)... but I feel like my luck has finally run out.			12:18 PM
I feel better. I'm sorry it was at your expense.			12:24 PM
I'm failing at being a good wife. 😭
	You're failing at being a living wife.		12:25 PM
🤣			12:26 PM

She went from "I don't feel like it's the end" to "I feel like my luck has finally run out" in 6 minutes (then "I feel better" in another 6). But never stopped worrying about me.

Outwardly, she was expressing a great deal of uncertainty, and her emotions were swinging wildly (though she usually ends on a positive note). Privately, however, in the letter she finished two hours earlier, she had already said goodbye. I just didn't know it yet.

She had 83 days remaining.

December 7

Not much happened for three weeks. We had to wait a month from the first blood test to do another one. I've told this story before, but I took the 7th off, so I could go with her to get the blood test. That afternoon, she would confess that she'd gone the previous day, by herself, and had the blood drawn.

The way I remember it: I started to ask why… why didn't you wait… when I had a moment of slow-motion clarity—like in A Christmas Story, when Ralphie drops all the lug nuts ("Oh, fuuuuuu…dge")—and I realized that if she'd had the test done yesterday, then she'd gotten the results this morning, but she hadn't shared them with me, which meant they must be… oh, fuuuuuu…

It wasn't an anomaly. Her CA19-9 had risen from 166 to 384. She was fucked, and there was nowhere to hide.

61 days.

December 11-19

Until then, we had told no one, but she saw her parents every day and could no longer hide her pain and weakness. She told them on the 11th. On the 13th I emailed mine, knowing I couldn't keep it together on the phone. I summarized what had happened and what was coming, and concluded with this:

However... keep in mind that the 5-year survival rate for this cancer is about 15%. We're at 3 1/2 years. Looking at the whole picture, and considering the overall decline in the last month or two, I'll be shocked if this ends well.

*     *     *

Due to her rapidly deteriorating condition, Friday the 14th would be my last day at work until after her death. We flew to Honolulu on Sunday to get a PET scan on Monday. We came home the same day, but the experience left her dehydrated, nauseated and vomiting—and therefore unable to rehydrate—so we spent the night in the ER getting fluids and pain & nausea meds. I emailed my family a summary of our (incredibly) long weekend on Tuesday:

A clusterfuck from the beginning (no one's fault), but I'll spare that story for another day. The test got done, but we're still waiting for results. I expect to have them today, but no matter what we see the doctor tomorrow afternoon, so we'll know then.

The last 36 hours has been the most fucked-up since July 2015.

She's on 2 anti-nausea meds, and they've doubled her dose of oxycodone; the pain is finally… let's call it manageable, and at this moment so is the nausea. That could change by the time I hit send.

We didn't yet know why she had pain, but we knew it was aggravated by stillness. She had the oxycodone, but it wasn't enough, and I didn't know if it was safe to exceed her dosage (as noted above, they doubled her dose—after this trip). So here's how that trip went:

Sitting caused her pain: at the airport, on the plane, in the courtesy shuttle, and in the rental car. We stopped at a shopping center to get food. The place fucked up our order, but we declined their offer to fix it because she was desperate to get to the hotel. Then, as we turned to leave, she fell. I can still see it… a slow-motion pirouette, legs simply giving out, and the food container she was holding opening on the floor. We declined their offer to replace it, because she was truly desperate to get to the hotel. Lying on the bed at the hotel caused pain, so every few minutes she would get up—all night long. She tried not to wake me, but I don't think she could bear to be alone with the pain. The repeated waking was a surrealistic nightmare. Morning brought more pain: sitting in the car, sitting in the waiting room, and lying on the PET scanner table. Then reverse the whole airport process to get back home. The Nineteenth Level of Hell.

*     *     *

[Note: she had endured both breast (2005) and pancreatic (2015) cancer. The PET scan confirmed metastatic bone disease, but the doctors wouldn't treat it (nor would insurance pay) until they determined which type it was. This would become A Whole Thing.] I emailed my family again on Wednesday:

OK, so crisis mode has basically passed... she still has some pain and nausea, but it's been contained (not necessarily controlled), at least to the point where we're both able to get decent sleep. (Still waking up every 2-3 hours for meds, but better than every 10 minutes.)

Meanwhile... the results are in, sorta. There appear to be metastases in the bone, but this (of course!) requires "additional evaluation with MRI", so they're trying to schedule that. One of the goals of MRI is to see if it can be biopsied... which is to determine the type of cancer. Apparently, pancreatic "doesn't really like bone", but breast does. The indication from the doctor yesterday was that this is good news (in wolf's clothing), because it'll spread slower in bone than soft tissue. I'm taking that with a mountain of salt, though, given how quickly we went from minor ache to acute-writhing-fuck-you-I-can't-live-this-way. So I guess we'll see.

Breaking news... I just went to give her next pill, and she asked for food. That hasn't happened since Sunday.

Wait… are you supposed to go three days between meals?

Goddamnit. When I started this, I couldn't believe how few days she had. Now I almost can't believe how many.

It's 49.

December 25 - January 4

On Christmas Eve, the nausea again overwhelmed her. Also, the oxycodone's best-known side effect (next to addiction) had kicked in. I emailed my family in the morning:

Spent 3 hours in ER this morning getting fluids and anti-nausea, and hoping for relief from 9th day of constipation. We're fine, but I'm not calling you today.

Merry Christmas

*     *     *

My dad's birthday, four days later:

Subject: Happy Birthday!

It’s 1:45am and we’re back in the ER getting fluids and anti-nausea meds, so I may not call you today.

*     *     *

She had long since stopped sleeping in bed. Thankfully, we had a sitting area in the bedroom with a reclining love seat (plus TV, etc.), so all the "sleeping" happened there (I mean, by this point everything was a nap—proper sleep was gone forever). She was still able to sit and stand on her own, but she was quickly becoming weaker and more unsteady. Also, every time she woke from a nap, she wanted to get up immediately; it was a compulsion… a mania. My best guess is that it was the only semblance of independence left to her, the only decision she could still make for herself, and some instinctive part of her brain would not—could not—relinquish it. (This wouldn't truly stop until three days before she died.)

Her partner emailed me the morning of January 2nd. The highlights of my response:

Until yesterday, I mostly sat and played video games [Note: with the volume off] while I waited for her to wake up. I'm making an effort to be a little more functional, actually get a few chores and shit done... though that does make me feel a little guilty, since I'm not (right) there when she wakes up.

Re: euthanasia, we are investigating. Apparently, we need 2 doctors who are willing to state that she may have less than 6 months to live; a psychiatric report (to determine—I am not making this up—that she's not depressed); and a doctor willing to prescribe the medication. The problem is, the law is so new that no one knows anything, and no one wants to commit career suicide helping with someone else's real one. My prediction is that she's gonna get screwed on this.

There is nothing for you to do. I have a number of resources here, including friends and her parents. But none of them can get my baby back. I do some completely uncontrolled sobbing, usually from out of nowhere, and that keeps me going.

A word on assisted suicide: Hawai'i's "death with dignity" law had gone into effect, coincidentally, on January 1. When we spoke with hospice on the 4th, however, they hadn't even established their policy (and when they did it was basically "we do not help to accelerate death"). We were angry that the law was there, but the mechanism was not, because her suffering was growing. I won't rant, though, because I have a dark little secret: sometime after she died, I realized how awful an assisted suicide would have been for me. Imagining that moment… she is about to swallow the pills, to deliberately send herself into oblivion—to vanish from me, forever—and I know that I would never stop wanting just

one…

more…

minute…

PLEASE

*     *     *

I hadn't updated my friends for 3 weeks, so I emailed them on the 4th. The MRI had been done on New Year's Eve.

It's been a fucking ride. Also, I apologize that this went long... once I started, I couldn't stop, and I find that it helps me to process it for myself when I write it out.

The MRI indicates that there is metastatic disease in the sacrum and iliac wings. (On the MRI report, this is referred to as "diffuse metastatic disease", which is the technical term for "holy shit, it's all over the fucking place".) Plus there is a 3cm mass along the length of the L5 vertebra that is causing a narrowing of the spinal canal, which may cause pressure on the spinal cord, which could result in paralysis. So, the next abhorrent step is to do a biopsy to determine which cancer this is, and do radiation on the mass to slow the effect on the spinal cord.

At my last report I told you she was having increasing levels of pain. The increase was rapid, to acute levels. We upped the oxycodone, then we got constipation (12 fucking days) and nausea, so we got anti-nausea and help-you-poop meds, but we still ended up at the ER on 3 occasions because she was vomiting and dehydrated. Since then, the oncologist started her on a bone strengthener (the cancer eats at the bone, which can cause breaks), which may have helped with the pain. But it's hard to tell, because I now have her on 100mg oxycodone per day, with rotating doses of Compazine and Zofran for nausea, which mostly has things under control. But all those drugs means she's basically in a walking coma. She sleeps for about 30-60 minutes, gets up for 5, or 10, sometimes 30 minutes, then back to sleep. If we walk across the street to see her parents, or go to the doctor's office, that's strenuous, so she'll sleep for a couple hours or more. And when she's up, it's mostly to force down some fluids and some food and walk around a little bit, because she gets achy from laying down too much. And by walk around, I mean shuffle in a circle around the great room a few times, at which point she needs to sleep. She woke up twice while I was writing this, once for a little food, once for a little drink, then proceeded to fall asleep at the counter. She just drifts off, standing up. This is... I don't know. Bleak.

There can be only one possible outcome here. Honestly, she seems worse today than just yesterday. And I am heartbroken in a way that I can't express with words, and I find myself sobbing uncontrollably out of nowhere. (At the silliest stuff. I took a few minutes yesterday to straighten up the garage—a mess we created just as this nightmare was beginning—when I found a small dumbbell she used to use. Immediately cried. It's partly the fact that she'll never use it again, but even more it's that I think about the way she was when she could use it. The loss of that person is already unbearable. And the only person who could truly give me some comfort isn't really here anymore.) So. If this is what the remainder of her days will look like, I truly hope there aren't too many of them.

Well, my sad friend… there are 33.

January 10-11

Every scan she had to do, starting December 9th, was a painful ordeal, and they got worse as she did. After the PET scan debacle came the MRI on New Year's Eve. It BARELY got done, because she couldn't hold the positions long enough. Only because the technician was an amazing, patient, and caring hero was it completed. [Remember, she had stopped sleeping in bed, because laying down caused pain. ON A MATTRESS. Every scanner table—PET, CT, or MRI—was unforgiving.]

Certain biopsies require CT guidance. Also, before doing a radiation treatment, the oncologist will use a CT to target the tumor (they tattoo dots on your body to use as aiming references). She needed both, and I knew that her endurance was near zero, so I managed to get them scheduled together, on January 10th. And, goddamnit, I tried to warn them… well, just read the email I sent the next day:

We had a combined radiation prep and biopsy CT yesterday. She was not supposed to eat after midnight, with only sips of water.

I did everything I could think of to prepare those motherfuckers for it. I called [Note: 2 days before the test!] and spoke to the radiology technician, who would be in the CT room for the whole procedure, and I explained that she can't handle being dehydrated, that she's always right on the edge of nausea anyway, that she can't handle the discomfort of the table, that they'll need to give her fluids, and anti-nausea meds, and enough painkillers to allow her to get through it.

So the first thing that happens is we sit in a room for an hour and forty-five, with no fluids and no meds, getting more dehydrated, getting nauseated and increasingly uncomfortable. When I asked the nurse, her response was, "Let me call, because we don't have any orders." They finally brought us down to CT, and the people doing the radiation prep had no idea that she needed any special treatment.

Long story short, they got the radiation prep done, and she'll be getting a single treatment today. (Originally it was 10 treatments, but I think I finally got it through this dumb motherfucker's head that whatever time she spends on a treatment table is painful. So they're giving her one giant dose, and that's it.) However, they did not get the biopsy done, because they tried to get her into the position without giving her the pain and anti-anxiety meds that they fucking told me they were going to give her. And, of course, she couldn't do it, which I fucking told them would happen.

Aaaaanyway. That's the end of that, and, despite a level of anger heretofore unseen, it really doesn't matter. We know what kind of cancer it is, because CA19-9 went from 166 to 384 to 515 in 5 weeks. And they did the breast cancer antibody test, and it came back normal. And she's not gonna do any more chemo, no matter what. So all this bullshit was moot.

You may wonder: then why did you put yourselves through all this? The best answer I have is, because her doctor was still talking about a life expectancy of 6-24 months (I suspect that even HE didn't want to face the truth). We didn't believe for a moment that she could last two years, but the possibility of six months (or even three) required us to consider palliative treatments. (Palliative care for bone mets may include chemo, which couldn't be done without knowing the type of cancer.)

Actual life expectancy: 26 days.

January 16-23

I was trying to accomplish things around the house and yard while she slept; she would text me when she woke. A couple of problems arose: 1) her mental and physical dexterity were decaying, so she'd become frustrated trying to type on her phone, and 2) although she knew she was very unsteady, she would text me but also NOT wait for me before trying to get up (her compulsion, as I explained earlier). I partially solved problem (1) by explaining that she didn't need to type a complete thought, or even a word; a single character would suffice. I augmented that solution, and partially solved problem (2), on January 18th, when it dawned on me to borrow a friend's baby monitor. Then, as soon as I heard a sound I could race to the bedroom. It wasn't perfect, but it was better.

I now present the entirety of her final messages to me, interspersed with some email updates I sent.

January 16, 2019
Jim			11:58 AM
Meds			12:48 PM

January 17, 2019
?			11:50 AM

*     *     *

Her partner and I had exchanged a couple of emails; this was January 18th:

[His previous message included this: "It is a strange thing. I would normally talk to her several times a week, and now I feel like our worlds are separating."]

This. So much this. I don't know if this will make you feel better, but I feel the same way. Once the drugs increased, she became less and less herself, and less and less 'there'. Or maybe a better way to put it is, less and less 'with me'. Sometimes, even when she's in the same room, the feeling of being alone is... crushing.

Don't bother sending stuff... we listened to (and enjoyed) the first one, but never got around to the second. The only thing we watch now is Modern Family, and even then she is, let's say 'muted'. We can't watch anything with even minimal levels of pain or violence. I had "Blue Planet II" on the other day (cuz I like that shit, and I figured, you know, it's interesting and so pretty), and she made me turn it off once the big fish started eating the little fish.

*     *     *

January 19, 2019
I			7:50 AM
?			9:43 AM
J			12:14 PM

January 20, 2019
J			6:05 AM
I'm iPhone			4:02 PM
[Note: I assume "I'm up" got autocorrected.]

*     *     *

One of her best friends from when I met her had heard about her plight and emailed me. He talked about how supportive of him she had been, and what an impact she had on his life. I responded on the 20th:

I've been going through phases… my latest, which started yesterday, is being overcome by reminders of the things she wanted to accomplish, but won't. It's mostly outdoor stuff, like garden beds that have been started but left unattended for weeks, and cuttings of plants that she was trying to propagate. All the signs of what I've come to think of as An Uncompleted Life. It is crushing, and I weep so much that hydration is a problem.

My previous phase was being overwhelmed by how very much my life has been improved by her. My situation when we met was dubious (no need to detail it since you were there), and I now live in Hawaii, a place I never thought I'd even get to visit. With so many amazing things and wonderful years in between. And she's made me a better person (despite my continued resistance). I owe it all to her, which is why your email resonated so much (i.e., more sobbing).

I relayed your message, and I know that she was pleased. (Between the Oxycontin and anti-nausea/anxiety meds, though her memories are intact, she sometimes becomes confused, and her emotions are somewhat dulled.) I know that, at another time, she would have been thrilled, much more so at your success and happiness than at receiving any credit for it.

*     *     *

January 21, 2019
Up			6:16 AM
Up			6:52 AM
?			8:11 AM
Jim			9:43 AM
!			10:33 AM
You			12:10 PM
Hey !			4:04 PM

January 22, 2019
I'm			5:07 AM
I			5:16 AM
Ok			7:54 AM
Hi			7:55 AM
Jim			8:48 AM
I'm up			9:38 AM
I'm			12:22 PM

And that is all.

*     *     *

That night—I don't know why—I made a record of the times we went to sleep and got up. With one exception, every time she woke, we'd have to get up and walk around, at least for a few minutes, before she could go back to sleep. (At 3:09 AM, I managed to convince her that we really didn't need to get up, since we'd only been 'asleep' for about 15 minutes; that bought me an extra 15 minutes.) This is what exhausted insanity looks like:

Lie down:		Get up:
7:00 PM		7:25 PM
7:55 PM		8:55 PM
8:58 PM		9:40 PM
10:00 PM		11:00 PM
11:20 PM		11:30 PM
11:42 PM		12:15 AM
12:30 AM		1:00 AM
1:30 AM		2:25 AM
2:50 AM		3:09 AM
3:09 AM		3:25 AM
3:40 AM		I don't know

To make matters worse, the days when she could sit and stand on her own had long since passed, so I had to help her each time. Standing was straightforward but sitting… was a process. The recliner was electric, with the controls on the inside of the arm. She was using two pillows—one for her lower back and one for her head. I'd get them arranged, she would hold my forearm, and I'd lower her to the seat. As soon as she touched down, with my other hand I would start the seat reclining. The problem was, I had to stop it at juuust the right spot. If I missed by a degree, or something else wasn't right, we couldn't just make an adjustment. We had to start over, which means she would stand back up, and we'd try again. Sometimes it would take three or four tries before she could get settled.

I fear it will seem that I'm complaining. I am not. I helped her in and out of that love seat hundreds of times; the sound of the recliner motor began to haunt me. But she was in constant misery, so if she required precision in order to be (what passed for) comfortable, then I would be precise. However…

…it had been like that—and getting progressively worse—for weeks. The next night, January 23rd, was the same, and there was no end in sight. For her, what had started as a kindness—letting her die at home—had morphed into inhumanity. I just hadn't realized it. And for me, it had become physically unsustainable.

She had 14 days left.

January 24

The drive to hospice is about 10 minutes. I played Israel Kamakawiwo'ole's White Sandy Beach and Lover Of Mine during the ride. I remember thinking of it as we drove away from the house, then frantically searching my music. It seemed so important in that moment. On reflection, I don't know why. Did I think I could make the ride more enjoyable? It occurs to me as I type this that it was, if anything, a cruelty—a reminder of a warm kitchen; a flurry of activity; the aromas of a simmering pot of soup, a fresh batch of cornbread, and a fire in the woodstove; two loving and devoted companions; a wonderful, happy life, with the promise of more tomorrow.

It would be easy for me to agonize over this now, but her world no longer extended beyond her body; if she noticed the music, or anything else during the ride, she gave no indication.

When we arrived at her new residence, she had 13 days left.

January 25 - February 5

In a few weeks, after she's gone, I'll send a thank you letter to the staff at the hospice facility. It will fairly succinctly note the highs (such as they are) and lows of her stay. Here is an (admittedly highly redacted) excerpt:

There are so many things that are so vivid: the massage, the baths, the medication, the breathing, the Foley (and the realization that, not only would she never get out of the building again, she'd never even get out of the bed again), so many desperate attempts to make her comfortable, more pillows, getting vitals, more pillows(!?), that time (apparently) I slept through the bed alarm. That time I was in the way when you were trying to change/bathe/move/medicate—which is all of you, every day. Every time you stood there and patiently discussed the plan for the day. Trying to convince me to give more meds, then having to rein in my enthusiasm for more meds. That Sunday night she finally slept peacefully, the one where she never woke again.

I think most of that is self-explanatory, except possibly the bed alarm. I talked earlier about her compulsion to get up as soon as she woke. It continued at hospice. Despite being filled with methadone, morphine, lorazepam, and olanzapine, she twice managed to get her feet over the bed rails and onto the floor. She just never stopped trying to escape. This is common in hospice (they very quaintly call it eloping), so they have bed alarms that warn when a patient is on the move. They are shrill, and echo across the building. One morning a nurse informed me that her alarm had gone off overnight; I never stirred. If you've ever heard one, you'll understand how tired I was.

Some nights, if she was particularly restless, I would push the hospital bed against the wall, then push the sleep chair up against the bed, so if she managed to get her feet out, she'd step on me. One night, in desperation, I curled up at the foot of the bed and slept by her legs.

*     *     *

February 3, 2019 was Super Bowl Sunday. It was the first Super Bowl since 1996 that we didn't watch together. I know she was conscious that evening because someone told her that the Patriots had defeated the Rams, and I remember she acknowledged it. That is the last memory I have of her as an animated being.

*     *     *

I will not describe the next two days.

*     *     *

One.

February 6

The previous week, she had awakened one day in a state of agitation; a brief burst of energy and clarity. She called to me frantically, and desperately begged me, "Please tell me it's ok! Tell me it's ok to go. I need to know it's ok, and that you'll be ok." "Of course, baby," I said, "You go as soon as you're ready. I'll be fine. You just take care of yourself. Do whatever you have to do." I remember trying to be calm and soothing. And convincing. Everything I was not.

I'll never know what caused that outburst; what was happening in her head while she slept that prompted her plea. But each day after, once everyone else had left for the night, I would speak a few words of encouragement to her while she slept. Just in case.

Sometime in the midnight hour of the 6th, she decided it was ok to go. The nurse had done a routine check and found that she had stopped breathing, and beating, and existing. She woke me. I know the exact words she spoke; they still reverberate in my head.

*     *     *

I needed to tell her parents, daughter, and sister, who were all at her parents' house, but doing it by phone was out of the question. I made the 10-minute ride in 6 minutes, calling my dad on the way, and delivered the news. My wife was nominally Buddhist, and her parents take it seriously, so the next thing to happen was the 'Pillow Sutra', which is performed immediately after death (even at 2 AM). We all returned to the hospice facility; the priest met us there, conducted the short service, and left.

The nurses had made clear that we could have as much time with her as we wanted. I left her family alone and wandered out to the nurses' station; I didn't want to interfere with their time, and I wanted my time to be just the two of us. After everyone left, I went back in her room, where I made an unexpected discovery.

I didn't need time with her.

I was ready to leave.

I wasn't fleeing the scene in some kind of panic, nor was I unable to look at (or be near) her body. I simply realized that I wasn't alone with her… I was just alone. What remained in that room was not my wife, and hadn't really been my wife, in a way that made any fucking sense, for weeks. She had gone, and it was time for me to go, as well. I stayed for a few minutes, just to make sure I wasn't forgetting something, forfeiting some opportunity that I would later regret. I wasn't, and I didn't. That is not how I would choose to remember her, anyway.

So I went home, and I fell asleep—though it was no longer necessary—on the love seat.

*     *     *

This all started with the letter my wife wrote to me. It seems fitting to end with that (well, a piece of it, anyway):

I am here.

I've always been here. I'll always be here.

The molecules, the atoms—the whatever is smaller than atoms—that make up ME are part of this world. They always have been. They always will be.

I am part of this world like a salt molecule is part of the ocean. You can define it as separate, but for all intents and purposes, it's just part of the ocean.

When I stop and look at a beautiful sunset, I'm reminded: I'm part of that sunset. I'm part of this world, I always will be. And it makes me joyous.