Category Archives: Life!

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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Made it again!

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Today is my birthday!

Normally, if there is a day in the year when I celebrate my continued survival, it’s Thanksgiving, because of the timing of my lymphoma diagnosis in 1981, and the powerful memory I have of going to my grandparents’ traditional Thanksgiving dinner and wondering if it would be my last.

This year, though, I’m feeling an extra pride and sense of accomplishment at reaching my birthday. Completing another trip around the sun isn’t always easy, and once again I’ve proven to be a pretty damn durable man. Heh.

Kimberly reminds me that today is six months since the biopsy at the start of this adventure. Six months. It seems like both too short and too long a time. No wonder I’m feeling extra proud to have made it back to October 5 this year.

In what I freely acknowledge is a sign that I am way too nerdy, I started my celebration last night by reconfiguring our home wi-fi network using the new Apple Time Capsule I’d bought myself as a sort-of present.

I suggest no one try to read any deeper meaning into the fact that I bought myself a device designed to protect one from calamity (by doing automatic over-the-air computer backups). And I’m sure it’s just coincidence that the same Apple order also included the extended warranty AppleCare coverage for my laptop.

Sure, armchair psychologists might think there is some significance in my preparing for disastrous system failures as I approached my birthday.  And they might not be entirely wrong. But those who know I had the solid-state drive on my laptop completely fail in July might wonder what’s taken me so long. Life is complicated and interpretation is tricky.

Anyway, other plans for my birthday are sure to destroy any image of me as a dynamic and exciting fellow, should that have mistakenly lingered somewhere. The radio antenna on my car got bent recently, so I’m planning on spending a little while swapping in the new part I ordered to replace it. Then, we’re off for a drive, to watch the odometer roll over to 100,000 miles in our 1997 Saab.

Yup, Mr. Excitement, me.

All right, it’s not quite so totally boring. We are going out to visit the farm that does our CSA, giving us a chance to be out in the country on what is turning out to be a lovely, sunny Fall day, and chat with the over-educated young couple who own the farm.

In other news… eggs are back! For some time, my tastebuds had been zapped in a way that meant I found the taste of eggs strangely off-putting. Which is ironic, given that we keep chickens, and eggs used to be a staple in my diet. A few days ago I tried them again, and they once more taste good! Yay! Ironically, our chickens are now molting, and egg production has plummeted. (I know, right?)

More patient updates: I’ve now gone about a month without using my PEG tube for nutrition. That’s a good thing, though it does require attention on my part to make sure I eat enough to keep my weight stable. My healed mouth tissues are still sensitive, both in taste and physically, and even a meal of bland, soft food can leave my mouth feeling sore for a while. Like so much else, it’s improving, but slowly. (In the meantime, I still have the PEG tube, which I keep in good shape and flush regularly, just in case.)

Since the last post, I’ve had another follow-up appointment with Dr. Baik, who was sufficiently satisfied with my progress that I’m now done with the medical oncology part of my treatment coverage.

And, we now have a date for my PET scan. The appointment will be November 4, and we’ll see Dr. Liao later that same day.

OK. The sun is out, and I’m thinking it’s time for a birthday doughnut at Top Pot! I gotta  go. Kimberly’s waiting to take me out.
Happy Birthday to me,
Happy Birthday to me,
Happy Birthday dear me-eee,
Happy Birthday to me.
(heh).

The Wait.

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(I am mightily resisting making a bad musical pun right now.)

You know you are a high-mileage patient when you are ecstatic that the IV for your CT scan only took one needle stick. (I can’t remember the last time that happened. Three is average. Seven is not unheard of.) The scan on Friday went quickly and very smoothly. (I’m not reading any meaning into that. No. I am not. Not.)

One way to keep from thinking about Impending Big News is to focus on the mundane. I’ve been keeping busy, with work, and with household tasks. On Saturday I gave the chicken coop the first full cleaning it’s had in months, moving a bunch of well-used bedding into the first stage of our composting process. I’m looking forward to next summer’s supply of rich high-nitrogen compost. It wasn’t much later before I was really feeling my back and shoulder muscles stiffening and tightening up. Still, it’s a ‘good kind of  tired’.

I was eager to get the coop taken care of yesterday because today will be no day for working outside. The seasons are definitely changing here in Seattle, and today storms will be moving through the area. This morning has dawned dim, foggy and damp. There is a black raven perched on the wire outside the window. I hear a mournful foghorn and occassional distant thunder. (I’m not going to be reading any meaning into that, either. No. I am not. Not.)

The sense of impending winter makes me even more satisfied with two other small projects completed yesterday. I replaced a broken light fixture in our basement, and I swapped out a broken switch in my bedside lamp. The shorter days and the return of the rain have me subconsciously seeking the missing light.

Yesterday wrapped up with a good exercise walk just before sunset. As we often do, Kimberly and I walked over to the neighborhood community garden. There Kimberly has a small plot in which she grows things like tomatoes and tomatillos that need the full sun our yard does not provide. Her tomatillo plants have been thriving this year, and branches shoot every-which-way, with dozens of the lantern-shaped husks in which grow the green fruit. I used twine to tie back a few branches that were sticking out into the pathway, and we trimmed off a few more that won’t have time to actually bear fruit this year. We were happy to see some real red on a couple of her slower-to-ripen tomato plants. I had been worried they wouldn’t make it in this season. After a bit of trimming and tying back, Kimberly picked a small harvest of the ripest fruit, and we carried it back home.

After all that exercise, I managed to sleep pretty well. I’m happy that I’m not feeling too wiped out this morning. Today’s plan is for a rest and recovery day – the most physical thing on the schedule is a short drive to see a college friend give a presentation on her recent PhD research. Oh, and I hear tonight’s match for one of our local sports-entertainment corporations should be quite a show, so I’ll be watching that while lounging on the sofa. And, with apologies to Fleetwood Mac, not thinking about tomorrow.

(By the way, if you haven’t guessed what’s the musical pun, based on the title of this post? This is.)

No News is not Bad News.

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We’ve been a bit slow about getting new posts up on the blog, which I am sure may have worried some of you, particularly after the tone of the last post. Don’t worry; the lack of posting is not a sign that we’ve been overwhelmed or that things have gang agley. Instead, it’s a sign that things are proceeding as expected, and we are actually getting some time for other activities.

Since the end of treatment, I’ve had two follow-up appointments at UWMC. A week after the end, we met with the rad-onc department’s nurse practioner, Barbara Fristoe. She looked me over, said I was doing very well, and maintained the general consensus of the medicos that I was taking a surprisingly small amount of painkillers. The most exciting part of that appointment was getting the agreement to remove my PICC line, since my blood pressure and fluids seemed to be stable. We got the PICC line pulled that afternoon by the friendly folks in the infusion center, which was great.

The second follow-up was a week and two days later, with Dr. Liao. According to him, side effects should have peaked during that week, which certainly jibes with the impressions I had, captured in the last post. Overall, I appeared to Dr. Liao pretty much as expected. He did notice that I’ve lost 5 pounds since the end of treatment, which is more than I lost during the entire 6 weeks I was in treatment. He wasn’t overly concerned, but was glad to hear that I’ve been monitoring it, and taking steps to control that. He instructed us to pay attention and make sure I was getting enough nutrition.  (Which, I have to grumpily comment, is easy for people without mucositis to say.)

My next appointment with Dr. Liao is in mid-September, by which time I should have healed up enough for a CT scan to be useful to tell us how I’m doing, and review the effects of the treatment. I also have a follow-up on the med-onc side with Dr. Baik in August, but aside from that, my calendar is remarkably free of medical appointments. It makes a nice change from June.

So now I’m working on recovery. I think I’ve passed the summit, but there’s still a lot of road ahead. We did manage to fit in some non-recovery related activity this weekend, with a fair amount of socializing and some home-improvement activity, which I hope to detail in another post. Today I just wanted to catch us up, and let people know that all is going about as well as we could expect, even though we’ve been quiet.

How I’m Feeling.

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It’s a complicated mix.

I have two more days of treatment remaining. I’m confident that I can handle that, and get through it with energy and determination. On the other hand, if on Wednesday evening, I’m not asked to go up on the podium to don the ceremonial jersey for winning the “King of the Radiation” competition, I’m going to feel disappointed. (No, I don’t know what color that maillot would be… glow-in-the-dark green? Bright red to match my face?) In case the race officials have fallen down on the job, I am planning on wearing suitable gear Wednesday, shown below. Bloo

(If you want your own shirt, or hoodie, or a pin like the one Kimberly’s been wearing, go to stupidcancer.org, an organization for young adults with cancer.)

It’s not like I’m coasting to the finish, either. Part of me is starting to worry that my face will actually fall off before Wednesday. I’m amazed by the changes in my skin. The rad-onc folks gave me tubes of Aquaphor Healing Ointment as moisturizer; it’s this wonderful stuff that’s almost half petroleum jelly, with glycerin and several other gooey, waxy, emollient substances. It’s THICK. For weeks now, I’ve been coping with the minor annoyance of reaching up to scratch a momentary itch on my face and coming away with my hand covered in goo. It goes on, and it sits there, and doesn’t evaporate. So it is really amazing to me that I’ve gotten to a state where it seems my skin absorbs it all, and I need to apply another coat regularly. How is that possible?

I suspect it has something to do with the elves. When I look at my face in the mirror to reapply the Aquaphor, I see that the skin on my cheeks has been cunningly replaced with leather from an old suitcase. Where the elves are taking the old skin and the Aquaphor I don’t know, but the ways of elves are mysterious. I just wish they’d leave it alone, because all that mischief leaves my face feeling itchy, and hot, and quite uncomfortable.

It’s the doctors I blame for my nasal passages. Despite frequent applications of saline spray, and delicate applications of Aquaphor-laden Q-tips, the linings of my nostrils are dry, cracking and gently bleeding. No, it is not pleasant. It ranks up there with the rapidly increasing chapping of my lips for most-annoying trivial side-effect.

Fatigue has also bumped up another few notches. I want to sleep all the time. Granted, a fair portion of that is due to the anti-queasiness meds, and the painkillers, and the pain that evades the painklillers, and the daily caloric intake challenge. But deep down my body is working very hard to withstand some very powerful assaults, and I’m feeling it. I’ve started taking advantage of the fact that, with the stomach tube, I can be eating and sleeping at the same time, and have had a couple good naps while pumping food in.

Emotionally, though, I think I’m in pretty good shape. I will admit to being pretty cranky about this whole “effects continue to build after the end of treatments” scam, though. While I understand the process intellectually, it hardly seems fair that my face will still be trying to fall off next week. I’m really eager to be in the “I’m feeling better today” phase. I spend a far amount of my awake time thinking about the projects I want to get to, and meals I’m looking forward to enjoying once I’m again in a condition to do that. (I am, however, also reminding myself that it’s going to take longer to get there than I would like.)

That is where I anticipate the next big challenge. When I’m healing, but it isn’t going fast enough, or is unpredictable, or spotty. That will take some work.

But first, I have to ‘make it to the podium’ on Wednesday without my face falling off. With my weight stable and my systems all functioning, and all my meds in the proper dosages and plenty of sleep, and fluids, and everything else.

So that’s what I am focused on now.