To sing the song of life.

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While I felt that I was fully present during the memorial service for Paul last Saturday, I realized listening to the audio recording for the first time that I missed a few things. In fact, I hear something different each time I listen. But through each listening, one thought remains constant: we were singing the song of life. A song of Paul’s life, extraordinary, brilliant, and too brief, and a song of the ways in which that life changed our lives.

The service closed with a reading from the Roman philosopher Seneca, from which the phrase “to sing the song of life” is taken. The sound cuts out for a few seconds during the reading, so I’m including the full text below. We read this passage at the memorial service for my father, just weeks after Paul’s diagnosis, so I’ve heard Paul, standing next to me, reading these powerful words. I never expected to be reading them again so soon, nor without Paul by my side.

In the presence of death, we must continue to sing the song of life.
We must be able to accept death and go from its presence
better able to bear our burdens and to lighten the load of others.
Out of our sorrows should come understanding.
Through our sorrows, we join with all of those before who have had to suffer
and all of those who will yet have to do so.
Let us not be gripped by the fear of death.
If another day be added to our lives, let us joyfully receive it,
but let us not anxiously depend on our tomorrows.
Though we grieve the deaths of our loved ones,
we accept them and hold on to our memories as precious gifts.
Let us make the best of our loved ones while they are with us,
and let us not bury our love with death.

A Tender Heart.

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Last Saturday afternoon, a number of Paul’s and my family and friends gathered at Gethsemane Lutheran Church to celebrate his life and mourn his death. The speakers were dear friends of ours: Mark Liebenow, the minister who married us in 1998; John Serna, Paul’s best friend from high school; Mason Woo, friend from Brown and the best man at our wedding; and Joanne Engquist, pastor of Gethsemane, who was with me during the last two days of Paul’s life. Ray Price, bagpiper at our wedding, and my former bandmate, played, as did pianist Anita Anderson.

I have an mp3 of almost the entire service (apparently the bagpipes didn’t pick up!), and I will figure out how to upload and link to it soon.

In the meantime, here are the thoughts and memories of Paul that I shared.

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I’ve spent a lot of time recently wondering how I could begin to capture the Paul I knew and loved, and what he meant to me, in just a few minutes. We knew each other for almost 33 years, and were together for 21 of those years. I realized that I could talk ‘til y’all were fidgeting in your seats, ‘til my voice gave out, and I’d barely have touched the surface. So I decided to tell you just a couple of stories, one from the beginning and the other from near the end of our years together. I chose these stories in part because they include some of Paul’s writing, which I love, and because they capture one of my favorite aspects of Paul: his enormous, tender heart.

Paul and I met on Valentine’s Day, 1981, which seems fitting for the beginning of a long love story. There’s a funny bit of story around our first meeting, but I’m not going to tell you that now. More than a few people here know it, so if you haven’t heard it, just ask around today and you’ll likely find someone who’s willing to share it with you.

Instead, I want to tell you a story from about a week later. That day, Paul gave me a card with a drawing by artist Richard Stine. A man stands next to a large rock, his tongue pulled out of his mouth by the rope knotted around it, the other end of which is tied around the rock. He is, literally, tongue-tied. The caption reads ‘Man struggling with an inability to properly express himself with words.’ We hadn’t known each other long, but I already had a sneaking suspicion that having a rock tied to his tongue might be the only thing that could keep Paul from expressing himself quite ably with words. And, in fact, the entire inside and back of the card were covered in very sweet words about… well, the sort of things you write when you’re in the first blush of love, and the smallest things make you happy. I’m not going to share all of them, but they ended like this:

But when he tried to figure out how to say this to her, he felt all awkward, like there was a rock tied to his tongue and this guy called Stine walked by and drew a picture of it and put it on a card, which our hero gave his friend to show how he felt, knowing she’d understand, and glad that she would, and glad that he knew her and glad that she existed and glad for the day and just plain glad.

[There was a bit of extemporaneous speaking here, as I didn’t manage to write anything down beforehand, about love, and cancer, and our coming apart and eventually finding our way back together again. You and I will both be able to hear it on the mp3; I hope it made sense.]

When Paul was diagnosed with oral cancer early in 2004, we started writing a blog to keep our family and friends updated on what was going on, both medically and emotionally. After the medical crisis was over, we continued writing, because Paul had always been a writer, and I had become one. In May of 2005, after hearing a song that moved him, Paul wrote this on the blog:

I’ve always been a sappy, idealistic kind of guy, the kind of guy who loves Frank Capra films because he wants to believe in goodness, and who wishes that the news from the Senate this week had been a bit more like Mr. Smith Goes to Washington. Luckily, Kimberly is pretty sappy in her own way, so neither of us has to be embarrassed when we get misty-eyed about a TV show. Since my lymphoma, I’ve developed an added dimension of this, which, for the lack of a better term, I’ll just call ‘the weepies.’ There are some things that can trigger tears streaming down my face before I know it. My near-death experiences have left me with a clear channel straight to my unfiltered emotional heart, and every so often, something can zip right down that channel and hit a switch, and out come the tears.

It’s not always tears of sadness, or pain. In fact, to me the interesting thing about these tears is that they are often so many things at once, happy, sad, grateful, grieving. I wasn’t kidding about that clear channel; this is undistilled emotion, before it’s gotten fractionated into happy or sad. Depending on the trigger, it may have more a flavor of one or another identifiable feeling, but it’s never, ever simple.

Songs seem to be good as triggers, and there are some that get me weeping immediately, no matter what mood I’m in. One of these is the Louis Armstrong version of ‘What a Wonderful World’, although just about any other version will do. After what I’ve been through, the awareness of what it means to simply be alive to experience the world is powerful. I always think it’s funny when that song comes on the radio, because there it is, a happy, optimistic song, and there I am with tears running down my cheeks, barely able to speak, because it is such a happy song.

When Paul and I ran off to Hawai’i the week before his surgery last November, we went on a helicopter tour called Volcanoes and Waterfalls. Neither of us had ever been in a helicopter – or over a volcano – so we were excited. Because helicopters are loud, everyone was fitted with noise-cancelling headphones and microphones; the only way you could hear yourself or anyone else speak was when the pilot turned on the mics. For most of the flight, the pilot played a soundtrack through the headphones. As we lifted off, the first tune in the soundtrack was the theme from Hawaii 5-0. While we circled over the volcano, spotting two small active lava flows, the music was fiery and heavy on the bass.

Then we turned and flew toward an area where upland rivers drop over cliff after cliff on their way to the ocean. As the first waterfalls came into view, the soundtrack changed to Israel Kamakawiwo’ole’s gorgeous medley of Somewhere Over the Rainbow and What a Wonderful World. As Iz began to sing “I see trees of green, red roses, too,” I turned to look at Paul. His blue eyes were bright, and tears were running down his face… as they were down mine. (He was right that I’m pretty sappy, too.) We smiled at each other for a long, leaky moment, silently mouthed one of our terms of endearment, ‘sap’, and turned back to watch the wonderful world below us.

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When I finished reading, I asked everyone to stand and join me in singing What a Wonderful World. There were more than a few tears, including my own.

I see trees of green, red roses too.
I see them bloom, for me and you.
And I think to myself
What a wonderful world.

I see skies of blue, and clouds of white,
The bright blessed day, the dark sacred night.
And I think to myself
What a wonderful world.

The colors of the rainbow, so pretty in the sky,
are also on the faces of people going by.
I see friends shaking hands, saying, “How do you do?”
They’re really saying, “I love you.”

I hear babies cry. I watch them grow.
They’ll learn much more than I’ll ever know.
And I think to myself
What a wonderful world.

Yes, I think to myself
What a wonderful world.

Hawai’i.

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Four months ago, Paul and I were in Hawai’i. (How strange it feels to write that; it seems like so much longer since we were there.) Recently, as I was looking for something on Paul’s laptop, I came across a text file titled simply ‘Hawaii’. It contained a few paragraphs that Paul wrote the evening of our first day in Hawai’i. Since it was clearly intended as part of a blog post, I thought I’d share it here. As I read it, I realized that I hadn’t ever downloaded the photos of the trip that I took with my new DSLR, so I did that, and combined some of those images and shots from my phone together with Paul’s words.

Kimberly and I are not typically the ‘spontaneous getaway vacation” types.

But both of us felt that the coincidental trip to NYC in May, coming as it did just before we launched into the radiation treatments, was special. It was an extraordinary weekend, and having a big charge of enjoyment and wonderful experience right before a Big Bad Thing was really good.

So, with very little discussion ahead of time, as soon as my surgery date was settled, we booked tickets for Hawai’i. Where we are as I write this. Having been here less than 24 hours, I can say it was a very good idea.

Surprisingly, for people who have lived on the West Coast for so long, neither of us has been here before. It’s more surprising for me, because previously I’d been in 48 of the 50 states, having driven, taken the train and even bicycled across the country before. After reading and consultations with our many friends who have been here before, it seemed like Kauai was the island we would most enjoy, but when we checked the weather forecast, we ruled it out. We were interested in seeing the sun, and there was nothing but rain forecast.

So here we are on “the Big Island”, which, I finally learned, is the one actually named Hawai’i. We have had some light rain and overcast, just enough to ease our transition from Seattle, but today we also got the sunshine and warmth we were seeking. We fly back on Monday, and have just enough planned to know we will have a good time, and also have room for flexibility.

The “flexibility” was key just to getting here. Faced with strong head winds, Alaska Airlines flew us first from Seattle to Portland, where we refueled, giving us a little extra margin, I guess. The headwinds not only slowed us down, but made much of the trip bumpy as well. By the time our flight arrived it was two hours behind schedule, making a night-time arrival an early-morning one. But the Kona airport is apparently used to such things, and they called ahead so the rental car places would have people stay late. I was very grateful we’d decided to book a B&B an easy 10-minute drive from the airport, instead of some of the more distant options. Our gregarious and generous B&B host was even up and showed us to our comfortable room, and emphasized that it was perfectly OK if we slept in, and he’d have breakfast set aside for us whenever we got to it. Hurray!

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We awoke in a tropical bioregion full of plants and animals we’ve never seen before. Our breakfast, once we got to it, included fresh fruits I’ve only read about, and samples of others like pineapple and banana that were fresher and tastier than I’ve ever had. Later, we drove along the ridge through the Kona coffee belt, passing dozens of little coffee farms, and stopping at a couple for tours and samples.

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Our first farm reminded me a bit of something from rural Sonoma or Napa – a tiny operation tucked away off the road, employing a few people producing a specialty crop, involving growing, harvesting and processing on a small scale. But here, there were beautiful roosters and hens prowling the property, and the crop was real live organic coffee, growing right in front of my eyes! It was really exciting.

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Later we also stopped at a much larger, longer-established operation, which was also fun, but different, giving us a peek into another niche in the economic system, because they also process raw beans from other growers, and do a lot in the bulk export market. (They can also pay for manicured lawns, tour guides and a gift shop, as opposed to handing you a laminated ‘self-tour’ and going back to their real work of running the roaster and packing bags for sale.)

As we left, we picked up a snack of Portugese-style sweet bread, baked next door at the Kona Historical Society, supposedly using the traditional forno at their restored settlement site. It was tasty, and reminded Kimberly and me of the similar bread common to Providence, RI, where we met.

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We descended from the hills and had a very late lunch/early dinner at a highly-ranked cafe/restaurant right on the ocean. Our friend Janeen had posted to Facebook an item from Fodors.com, with a list of America’s best 15 indie coffee shops, and this is one. (I’ve been to a few of the others on the list, too.) It was a little hard to find, tucked in the back of a building in the darkest heart of the touristy section of town, but it was lovely and the food and view were delicious. It was great to be sitting outside in November, enjoying a light breeze that made the heat and humidity quite comfortable.

That’s where Paul’s draft ended, one day into a five-day trip that we packed full of beauty and wonder and delight. When we got home from Hawai’i, and he was preparing for surgery, he tried to condense those magical days into one brief paragraph:

We went to coffee plantations, and we saw sea turtles, and we walked through steam venting into a jungle from a volcano. We saw plants and animals and fruits I’d never seen before. We watched the sun set on one side and the moon rise on the other and between them the glow of lava lighting up the steam in an active volcano crater.

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Four months ago today, we spotted those sea turtles off Mokuola Island, and walked past those jungle steam vents, and watched that glorious sunset-moonrise-lavaglow. We also wandered the Hilo Farmers Market, and ate lunch at the lovely Hilo Bay Cafe, and brought Thai take-out back to our octagonal wooden cottage deep in a forest of giant ferns. It was an extraordinary day.

Since Paul’s death, I’ve been so thankful that we had that time in Hawai’i. We went aiming to store up as much joy as we could, to help us through the pain that we knew was coming. We couldn’t know then how much pain, and what a horrible loss, lay ahead.

Our second day in Hawai’i, we went back to the oceanfront coffee shop we’d found the previous day. Ever the coffee nerds, we decided to compare coffee from an Oahu plantation processed using two different methods, washed and raisin. When the mugs arrived at our table, Paul leaned over them to inhale the coffee aromas. And as he looked up, I captured him. Curious. Playful. Happy just to be there.
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For a dancer.

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Paul and I met on Valentine’s Day in 1981. Paul had just transferred to Brown; I had transferred there one year before. That evening, my friend Melinda and I went to a Valentine’s party hosted by another transfer student. I don’t remember who was throwing the party, or where their house was, or whether it was cold or snowy that night. All that detail is long gone. What I do remember is walking into a living room, where this cute guy was dancing with my friend Oona. Melinda introduced us (it was Paul), we chatted briefly, then Paul and Oona kept dancing. He seemed quite taken with her. I don’t remember anything about the rest of the party, either.

It’s not much of a story, really, and I probably wouldn’t remember that brief moment at the party had Paul not shown up at Melinda’s birthday party two days later. By then, he had learned from Oona that she was involved with another woman, and was not a romantic option. That night, after everyone else had gone home, Paul and I sat up talking for hours, with Jackson Browne keeping us company on my stereo. That night, thirty three years ago tonight, was when we first started to fall in love.

Since Paul’s death, one Jackson Browne song we listened to that first night together keeps coming back to me. It is beautiful and sad and, ultimately, hopeful. So on this, the first of many anniversaries without him here, I thought I’d share it with you.


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My dearest love.

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Yesterday, I lost my dearest love, Paul, a man with one of the brightest, strongest spirits and finest, funniest minds that I have ever known.

I don’t have the words to say how much I will miss him.

An unplanned detour.

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Kimberly and I have been slow to get updates out, but, after being home for a week, I have spent most of the last week back in a bed at the UWMC. We’ve been working to understand and treat some problems I’ve had in recovering from my surgery on the 25th.

(According to Dr. Futran, the surgery went very smoothly, and everything from the neck up has been healing right on schedule. More on that later.)

We had a follow-up appointment with nurse practicioner Carol Stimson at the otolaryngology clinic last Tuesday afternoon. The original plan for that appointment was to check how the reconstruction in my mouth was healing, remove the stitches from my face and neck, and pull the staples from the incision on my leg. But, as we were getting ready to leave for the hospital, it was clear to both of us that I was in no condition to just get a few stitches clipped and turn right around for home. We know enough to know that we needed the resources of medical professionals and probably a hospital stay to get me straightened out.

When I went home from the hospital a week after surgery, my weight was up ~25 pounds from the fluids I’d been given during surgery and after. Despite multiple doses of Lasix at home, I wasn’t losing the water weight. In fact, I seemed to be worse, and in alarming ways. (When fluid starts weeping through the skin on your swollen feet, something has gone badly wrong.) And, oddly, while my left arm and hand had returned to normal, my right arm was still swollen.

As it turned out, Carol agreed that going back into the hospital was the right thing to do. After clipping stitches and pulling staples (ouch!), she made arrangements to admit me, and rolled me in a wheelchair from the oto clinic up to a room just down the hall from where I was after surgery.

One advantage of being admitted to the hospital is ready access to the tests that we needed to help understand what was going on. Within hours, I had a wide array of blood chemistry tests, and an echocardiogram and a chest x-ray and a scan of my right arm. Another advantage is ready access to whatever specialists I might need to address what we found. In my case, the appropriate “specialists” turned out to be the “medical team” – internists who, in a hospital setting, deal with non-surgical, non-emergent issues like mine.

I had the echo because of my history of cardiomyopathy. Fluid retention is a common side effect (though not usually for me), so they wanted to check my heart function. There is some suggestion that my heart is not pumping as well as before – an ejection fraction of 25-30% as opposed to my longstanding 35-40%. (Normal is 50%.) What we don’t know is whether that is a cause or effect of all the fluid – maybe a little of both. Personally, I am inclined to think that when I’m not trying to pump 25 pounds of extra fluid around my body, my heart function will improve.

To get rid of all the fluid, my internist, Dr. Narayanan, has given me increasingly large doses of IV Lasix; it took 80ml 3 times a day to get me to the desired net fluid loss of 1.5 liters per day. (Yesterday I hit 1.9 liters! That’s 4 pounds… and a lot of peeing!) Pushing that much urine out of one’s body can mess up kidneys and blood chemistry, so they’ve been carefully monitoring both. So far I’ve only needed a little potassium each day.

The ultrasound of my arm showed a small blood clot at the site where I had a PICC line following surgery. This is highly unlikely to have life-threatening implications, since small arm clots don’t tend to break off and go to hearts or lungs. Treatment involves twice-daily subcutaneous injections of Lovenox for 1-3 months. I’m not amused, but it is what it is.

This morning, I weighed 71.8 kg (158 pounds), down from about 80 kg (177 pounds) when I was admitted. Today they switched me to oral Lasix, to be sure it would keep things moving. It seems to be doing the trick, which means I’ll probably be discharged tomorrow, and can finish getting back to my pre-surgery “dry weight” of 152 pounds at home.