Sunday, June 12, 2011

Thanks

The long goodbye

I was talking to my friend Eric a while ago about the Death With Dignity medication. I was saying that it was hard to know if or when to use it because I have had so many ups and downs over the past year - times when I was really not feeling well followed by times when I was feeling OK. So how would I ever know that this was the time - the time when improvement was not around the corner? Maybe, I speculated, when that time comes, you just know.

I can answer my own question now, in the affirmative. When that time comes, you do just know. My quality of life has fallen below unacceptable to me, and it's not coming back. The disease is a runaway train, and we can wait for it to go off the rails on its own, with all the possible attendant suffering, or I can jump off now. I'm choosing to jump off now, while I can still make that choice for myself.

I was able to finish the work for my graduate developmental class, which gave me an important sense of closure, as I was not able to finish that class last spring when I first got sick and had to go into the hospital.

Yesterday (Saturday) was a nice day. It was sunny and warm here. I felt the best I have all week. Seth and Miles were both here. My dad arrived from Maine. My mom brought us Ethiopian lunch (my favorite!) from the farmers market. My father-in-law Frank and my mother-in-law Martha drove up from Seattle. My former student and now friend Jamie stopped by after her graduation ceremony with her family. Jamie was wearing the ceremonial "hood" (actually more like a sash) signifying her masters degree, so I got on my fancy PhD regalia (gown and cap) from my graduation from Stanford - it was funny and fun. My best friend Eric arrived from North Carolina. We had a delicious dinner of Taiwanese food (thanks Martha!) and then sat on the deck in the late sun. I got to cuddle with Seth in the big brown lounge chair. My mom and Grace's dad traded stories of the Punic Wars and dental surgery.

By the way, some of the students and faculty in the Psychology Department at Western Washington University, where I have worked happily for the past nine years, are interested in starting a scholarship fund in my name which would every year (if we get enough) support a student with interests in child development. If anyone is interested in donating to such a fund, please contact my friend and colleague Diana Gruman (diana.gruman@wwu.edu). Grace is also happy to coordinate donations or contributions of any kind. If you feel like supporting a nonprofit in my name, my favorites are NRDC (where my good friend Jonathan works), ACLU, and Amnesty International.

Please don't feel the need to email, call, or write, as I probably won't have the time or energy to respond. If I know you, I'm confident that I know how you feel about me and that you know how I feel about you.

This past year has been difficult and exhausting, but also full of happiness. My illness, however unwelcome, has drawn me even closer to my family and friends. If people everywhere could treat each other the way you have treated me, well, that would be one big kumbaya.

So a Buddhist goes up to a hot dog vendor and says "I'll take one." The vendor says "Whaddya want on it?" The Buddhist says "Make me one with everything."

(Send complaints about the joke to Jane Kolb.)

Love,

Ethan

Saturday, June 4, 2011

Friday night update

Yesterday was a big day - the last meeting of my graduate development class. One of my favorite students, Jamie, arranged to have a class picture taken (Jamie is in the front row, just in front of me):

Thank you to my students for being awesome and to my colleagues, especially Larry, Kate, and Leslie, for helping me to finish the quarter.

Grace and Miles also left yesterday. Grace has a conference in Madison, but she is flying in and out of Minneapolis, where her best friend Claudia lives. Claudia will come to Madison and babysit Miles while Grace attends the conference. Grace and Miles are scheduled to return to Bellingham next Friday June 10.

Speaking of best friends, I was thinking about my relationship with Eric and how awesome it is to have close friendships that are not based on a romantic relationship or family ties - just a shared desire to be a part of each other's lives and a mutual enjoyment of each other's company and appreciation of their character. With Eric, I have always felt that I could call him in the middle of the night and say "I need you here; I can't explain now" and he would be on the next plane. And in fact he has been here for me since I've sick, so many times that I've lost count. And I know that he knows that I would do the same for him, if our roles were reversed. I hope my sons experience that kind of friendship in their lives.

It has been nice to have some quality time with my mom. Last night we watched the Miami-Dallas game, in which the Mavericks were getting "posterized" (Eric's latest addition to my son Seth's lexicon) by the Heat until making an amazing, improbable run in the last 5 minutes to steal Game 2 of the NBA Finals. My mom and I were whooping it up.

Speaking of sports and improbable finishes, Andy Bunn came over on Wednesday to watch Game 1 of the NHL Finals with me (thanks Andy!), in which the Vancouver Canucks scored the only goal of the game with less than 20 seconds left. I was disappointed for the Boston Bruins and their stalwart goalie Tim Thomas, but it was an exciting finish. On a much smaller stage, but no less dramatic, I played poker tonight with my poker buddies and won by going all-in on my last hand (last for me because my mom arrived to drive me home - I can't drive these days due to my drowsiness and spaciness).

Speaking of my condition, it has not been great lately. I am in constant pain which ranges from unpleasant but tolerable to excruciating and intolerable. The hospice folks gave me a new drug on Wednesday: Ketamine (or "Special K" as Andy reminded me that the club kids call it). It does take my mind off the pain, but it requires another pump that I have to carry around (in addition to the Dilaudid pump that I already had), as it is delivered intravenously. It also also gives me a "high" which is OK, but not when I'm trying to sleep. Last night I composed a magnum opus involving multiple streams of consciousness and the "many worlds" interpretation of quantum mechanics (I think Leo O'Brien was in there too). It seemed very profound at the time, but I will spare you the details. I am also quite physically disabled, which means that my mom has to take care of Seth during "my" time with him.

Speaking of Seth, he has been very kind to me lately, bringing me beautiful drawings (the latest was a detailed underwater scene featuring things we've seen while snorkelling together) and little origami creations. He refers to me as "Commander Awesomus Alphaman" and my pumps as my "jetpack." When I give myself a demand dose of Dilaudid, he asks if I am "firing up the jetpack" or giving myself a "turbo boost."

Speaking of kids, Grace found and scanned a picture of herself from early elementary school. I put it together with a picture of Miles and an early school picture of me:

Sunday, May 29, 2011

Goodbye Eric

My best friend Eric left tonight, back to North Carolina. I think it was last Tuesday that he proposed to visit. We said yes, and he was here Thursday. It was great to see him, even though I wasn't feeling great (the usual suspects, pain and fatigue, plus loss of appetite). My boys were happy to see him, especially Seth, who is very attached to Eric. It is bittersweet for me to watch Seth and Eric play physically the way that Seth and I used to (wrestling, rough-and-tumble). But I feel so achy and fragile these days - tonight Miles climbed into my lap to cuddle, which was great except that his weight actually hurt, and when he got down suddenly I had to gasp because it hurt so much. It made me really sad to think that I can't even enjoy a cuddle anymore. Both boys have been very nice and solicitous toward me lately, as if they can sense that I am fragile and need to be treated tenderly. I only took a few pictures during Eric's visit; here they are:




Friday, May 27, 2011

Two good quotes

1. From an article on Gandhi by Pankaj Mishra in the May 2 issue of The New Yorker (http://www.newyorker.com/arts/critics/books/2011/05/02/110502crbo_books_mishra):

"Gandhi's greatest contribution to the arsenal of political activism, however, is his theory and practice of bringing together great masses of highly motivated and disciplined protesters in public spaces. Here his spiritual beliefs were crucial: the assumption, in particular, that, regardless of the regime people lived under - democracy or dictatorship, capitalist or socialist - they always possessed a freedom of conscience, an inner capacity to make moral choices in everyday life. As his mass campaigns often proved, and the recent Arab uprisings have affirmed, such strongly self-aware individuals acting cooperatively in the spotlight of the world media could come to wield an astonishing amount of moral authority - the "authentic, enduring power" of people that, as Hannah Arendt wrote in her analysis of the Prague Spring of 1968, a repressive regime or government could neither create nor suppress through the use of terror, and before which it must eventually surrender."

The "freedom of conscience" part reminds me of Victor Frankl.

2. From an article by Laura Carstensen (Stanford psychology professor) and colleagues that I used in my lifespan psychological development class last week (citations removed from quote):

"Although there is no doubt that people experience an increasingly disproportionate number of losses as compared with gains as they age, and fully expect such changes to occur, we argue that the program of research we have outlined contributes an important complement to theoretical models that presume age differences reflect the accommodation to actual or even anticipated loss. In our theoretical formulation, loss is not a precondition for change; rather many changes reflect proactive shifts due to the salience of different goals at different points in the life cycle. Something in the finite nature of time appears to make life precious, especially as the end nears. Within this framework, age changes may reflect increased appreciation of life rather than despair about loss."

Carstensen, L. L., Isaacowitz, D. M., & Charles, S. T. (1999). Taking time seriously: A theory of socioemotional selectivity. American Psychologist, 54, 165-181.

Sunday, May 22, 2011

Sunday evening update

After a winter of many false springs, we are having a spring of many false summers. For example, it was sunny and warm on Friday, but cooler and wetter this weekend. On Friday I took a few pictures with Grace's camera. Miles fell asleep in a chair on the deck, so Grace let him nap there:


My mom's friend Lynne Breen visited from Maine Wednesday to Saturday, and was so much fun that both boys became attached to her even on such a short visit. Here Lynne, my mom, and Seth are playing baseball in the yard:




I got Miles a new garbage truck to add to his collection. Seth also got a cute jester hat for Miles (free because the propeller on top was broken). Miles calls it his "acrobat hat." Here are Seth and Miles (wearing the acrobat hat) playing with the new garbage truck:






I am very physically debilitated lately. I feel like a 90-year-old, or what I imagine a 90-year-old feels like, although I'm sure there are plenty of 90-year-olds out there who could kick my a** right now. The other day I was doing a tiny bit of yard work and I crouched down to dig out a dandelion. After digging it out, I thought "Uh oh, I don't think I can stand up from this position." I considered flopping over onto my side and trying to get up from there, but I wasn't sure that would be any better. Finally I got a hand positioned under me and pushed up to a stand, but it was close.

My appetite has been poor lately, and as a result I have fallen 15 pounds below my normal weight. I am unhappy about this, but even foods that I normally like seem unappealing and give me a stomachache. I am subsisting on Grace's smoothies, which I still find appealing.

I always thought that the last time I played basketball, I would know it was the last time, and it would feel momentous. But I can't remember the last time that I played. I could figure it out, but I don't want to, because I hope it wasn't the last time, but I'm afraid that it might have been. I'm a long way from playing basketball right now.

Speaking of basketball, I saw the end of the Bulls-Heat game tonight, won by the Heat. When LeBron and D-Wade buckle down on defense, the Heat are pretty scary-good. But the Heat's approach offends my basketball aesthetic. It's basically: "We're going to win because our two best players are better than your two best players. Our crunch-time offense will consist of one of those two taking his man one-on-one, while the other four guys watch." Not exactly the 1986 Celtics.

Ethan

A little about me, a lot about sports...

I woke up last night but I was still dreaming. In reality I was sleeping in the guest bedroom, but in my dream I was sleeping on the futon in the play room when I woke up and saw Grace sitting at the other end of the futon, looking at me with a beautiful warm smile. I smiled myself and felt filled with warmth and happiness. Then I woke up for real, in the guest bedroom, but I was still smiling and I could still feel the warmth, like a stone that's been in the sun all day.

I'm worried that the pain is increasing faster than our ability to catch up to it, much less stay ahead of it. Last Tuesday, we switched from the painkiller combo of fentanyl, methadone, and oxycodone, which wasn't working well, to Dilaudid (hydromorphone) delivered by a pump (an annoying little gadget that I have to carry around) subcutaneously (through a tube and a needle stuck into my belly). Hospice calculated the dose of Dilaudid equivalent to my combined doses of the previous painkiller combo (lots of guesstimation required) and set the pump initially to deliver a continuous rate of .9 mg per hour, with demand doses of .5 mg available by pressing a button. We've had to increase that almost every day, so that now the continuous rate is 5.0 mg per hour and the demand doses are 2.5 mg each (limited to one every 10 minutes). The point being, we've increased my dosage a lot and I am still in a lot of pain.

Tomorrow one of the hospice nurses is coming over to switch me from subcutaneous delivery to intravenous through the port in my chest. We're hoping that will be more effective.

Sports update:
Basketball: The Celtics were knocked out of the NBA playoffs by the Miami Heat. I was disappointed but not that disappointed because the Celtics haven't looked championship-caliber since mid-season. They gambled by signing Shaq and trading away Kendrick Perkins. Shaq was fun for a while, until his inevitable injuries (350+ pounds, 39 years old). Maybe they should have just kept him in the gym until the playoffs. If the Celtics had re-signed Tony Allen (dubbed "Trick or Treat" Tony by Bill Simmons for his inconsistent play for the Celtics) and if Allen had developed like he did this year in Memphis, then maybe they wouldn't have felt the need to trade Perkins to get Jeff Green. If, if, if... The truth is, even the most deluded Celtics fans like me should admit that the window for winning championships with this core of players has closed. Now they have the unenviable choice of keeping this core of players and watching them gradually deteriorate, or blowing this team up, rebuilding around Rondo and Green, and hoping to get lucky in the draft.

Of the four teams left (Chicago Bulls, Miami Heat, Dallas Mavericks, Oklahoma City Thunder [formerly the Seattle SuperSonics]), I'm not sure who I am rooting for. My (temporary) allegiance is available for a small fee or even just a good argument.
Bulls: Derrick Rose is fun to watch but Joakim Noah is painfully annoying. They do have ex-Celtics Brian Scalabrine and Tom Thibodeau (coach).
Heat: Dwyane Wade is one of my favorite players to watch, but I can't root for the Heat, especially after they beat the Celtics. They do have ex-Celtic Eddie House.
Mavericks: I've never liked Dallas (the city or the team), but they might be my favorite of these four! I like the way they're playing. Dirk has been fun to watch. And they have Jason Kidd, a Bay Area boy from back in the day (and source of one of Grace's favorite sports quotes - after leaving Cal, Grace's alma mater, and being drafted by the Mavericks: "We're going to turn this team around 360 degrees!").
Thunder: I don't like the city (not that I've ever been there, but I can just tell), especially after they stole Seattle's team. They have a bunch of exciting young players. I like Serge Ibaka, especially his name (Bill Simmons: "he sounds like the villain in a James Bond flick"). Actually, looking over their roster, they've got some cool names: Thabo Sefolosha, Royal Ivey. I still resent James Harden for not trying at all during his only NCAA tournament appearance (only 9 and 10 points in two games despite being the most talented player on the floor) and thereby damaging my bracket that year. They have ex-Celtic Kendrick Perkins (I refuse to consider Nate Robinson an ex-Celtic).

Baseball: after poor starts, the World Champion San Francisco Giants and the Boston Red Sox have both recovered, with the Giants in first place in the NL West and the Red Sox blowing a chance to take the lead in the AL East tonight. Seth and I watched the last couple innings of Tim Lincecum's 3-hit shutout tonight. Giants third baseman Pablo "Kung Fu Panda" Sandoval lost weight in the offseason and was hitting great before breaking a bone in his hand (should be out 2-3 more weeks). Boston's offseason signing of first baseman Adrian Gonzalez has paid off so far (leads the league in hits and RBI), although their signing of outfielder Carl Crawford has not (.213 average), and last year's big signee, starting pitcher John Lackey, was ineffective before getting injured. Overall, I like the Giants' chances better, although their combination of excellent pitching and weak hitting promises a lot more nailbiters this season.

Hockey: my two favorite teams, the Boston Bruins (since childhood) and the Vancouver Canucks (since 2002), are among the four teams left and could meet in the NHL finals. I would root for Boston, no doubt, although this area would be really happy if the Canucks won. The Bruins beat Philadelphia in the second round (sorry George!), overcoming the memories of last year's epic collapse against the Flyers (I admit to having a little soft spot for the Flyers, as they were the parent club for the Maine Mariners, the AHL team to which my family had season tickets when I was a kid).

Ethan