Good sports night!

Our friends Kristi and Mark came over for dinner and to watch the Washington-Nebraska bowl game, which Washington won, in local hero Jake Locker's final college game! As an added bonus, we saw the Stanford women's basketball team snap UConn's record winning steak (Stanford was also the last team to beat UConn before tonight, back in 2008). Yay!

Ethan

Squires Lake

We took a beautiful walk around Squires Lake this morning. Cold but sunny day.

Pics: http://remmel.shutterfly.com/2170

Ethan

Winter

Today we got a dusting of snow in the morning. It melted by the afternoon. In the morning Grandpa Chuck, Grandma Kathy, Rachel, Linda, William, Ben, and I walked around Lake Padden. Then I played basketball at the university. In the evening Grace's parents Frank and Martha Wang came up for dinner. It was nice to see them.

Some pics: http://remmel.shutterfly.com/2151

Ethan

Christmas pics

Pics from yesterday: http://remmel.shutterfly.com/2117

Ethan

Merry Christmas!

I rested up yesterday and I'm feeling better today. We had dinner last night at the pasta feed at the Boundary Bay brewpub with Kristi & Mark and Todd & Jennifer (thanks Kristi for the idea!).

Today Michael, Teresa, and Will Parke are coming over for brunch and to watch the Celtics-Magic game. My sister Rachel and her partner Linda and their 4-year-old sons William and Benjamin are arriving later this afternoon from Rochester NY. This will be the first time that Linda, William, and Benjamin have ever been to Bellingham and the first time that I have seen them (other than on Skype) since August 2009 (we usually meet in Maine in the summer, but that didn't happen this summer), so I am excited to see them. Rachel's family will be here until January 1, staying at a rental house a few blocks from our house. I'm looking forward to having the four boys (Seth, Benjamin, William, and Miles) together.

Merry Christmas to all!

Ethan

Guilt

I sometimes feel guilty about being sick, because it negatively affects my loved ones. I know it's not my fault that I'm sick, and that my loved ones don't begrudge my presence, but the feeling is still there. It reminds me of when I was teaching about death and dying in my undergraduate lifespan developmental course last winter quarter (less than a year ago - hard to believe!). The topic seemed so abstract then, and I don't think I did a great job of teaching it, because I didn't have much background knowledge or personal experience to draw upon. But I remember that the research suggested that people who are actually approaching death typically report that they are not afraid of death itself as much as suffering and being a burden to others. I can relate to that now. I'm a proud person, and being sick can be an involuntary infantilization. I remember my mom said something this summer that made me feel better, to the effect that taking care of others is an good opportunity to practice compassion. My mom is a wise woman, even if she sometimes mistakes my library card for her hotel room key and forgets what day of the week it is (just teasing, mom!).

Ethan

Thursday

I think one reason I don't feel well is that I may have a cold. It may seem strange to not be sure, but I have so many symptoms and side effects that it's hard to know what's what. The bad thing about a cold is that I'm already operating at about 50% of my normal energy level, so if a cold knocks me down 50%, then I'm at 25% of normal, which is barely moving. But the good thing about a cold is that it will get better.

Some good news: I had a blood draw yesterday and my CEA is 15.8, which is down from 23.1 on November 24 (lower is better). That's still well above the normal range of 0-3, but it shows that the chemo is working against the cancer.

Some more good news: my best friend Eric B. Martin's latest book is going to be published by Dave Eggers's press, and quickly, in order to coincide with the publication of Donald Rumsfeld's memoir. Eric's book involves a Rumsfeldian character, although I don't know the details. But I'm sure it will be interesting and awesome and you should all buy a copy.

Ethan

Health update

I am not feeling as good this week as I did last week, which is discouraging and a little worrisome. My ailments are too various and boring to list, but suffice it to say that I don't feel great. Grace and my parents have been great, as usual, taking care of Miles and Seth as well as me.

It was nice here this morning, sunny and warmer. I made myself get up and play basketball at the university, which was good even though I played terribly (no lift in my legs, almost every shot short, etc.).

I have felt a lot of love and support lately. I feel like it's always been there, but since I've been sick it's been condensed and accelerated. Although the experience of being sick has been horrible, I have seen so much goodness in people. So many people have gone out of their way to be nice to me - more than I could list.

As I've said before, I'm not worried about being gone for my own sake - I won't be around to care - although I am worried about the process of getting there. Most people in our culture know so little about dying - it has become disconnected from normal life, hidden behind a medical veil. I still feel like I don't really know what to expect. If my experience helps anyone else understand dying better, I think that would be worthwhile. Of course there are many ways to go. I can't really recommend the long slow way I'm going, although I suppose they all have their downsides.

I am most concerned about my sons. Especially Seth, honestly, because Miles is a little too young to understand what's going on. The best present any of you could give me is to be there for them, both during and after this process. I know you will be. I just wish I could be too.

Ethan

Back from Harrison Hot Springs

On Sunday afternoon we drove up to Harrison Hot Springs in BC. The iPad that Deepak and Shareen gave Seth kept him happily entertained all the way up and also on the drive back (thanks Deepak and Shareen!). We checked into the Harrison Hot Springs Resort. We had two rooms on the top floor of the east tower (the newer nicer tower) with beautiful views of the lake and the surrounding snow-dusted mountains - thanks to my parents for making the arrangements and treating us! We had dinner at the resort's Copper Room. Seth, Miles, and I danced to the live jazz band. I love to dance and both boys were in a dancing mood. They were doing soul-singer slides across the dance floor - Seth on his knees and Miles on his belly. I showed Seth some of the silly dances that Eric and I used to do, such as the "lawnmower" and the "sprinkler."

OK, I'm resuming this post four hours later. Just then Seth came into the office and we watched YouTube videos of funny dances (such as http://www.youtube.com/watch?v=dMH0bHeiRNg - you can see both the sprinkler and the lawnmower briefly around the 3:30 mark) which led to him asking to watch the classic Saturday Night Live "More Cowbell" skit, which both he and I find hilarious (http://www.funnyordie.com/videos/80a71ef8cb/more-cowbell - I wish NBC would make a good quality version available online).

Back to my Harrison Hot Springs story. Unfortunately on Monday I did not feel well. Fortunately the hot springs are a good place to relax and not do much. I soaked in the hot pools, took a brief walk with my dad (it was cold and windy), and built a Lego set with Seth (one of the ones that Gene & Jamie & Jordan & Jackson gave him - thanks to them!). In the afternoon I rallied a little to play in the children's pool with Seth and Miles. My favorite moments were towing them around with Miles hanging on my back and Seth on my front (getting a "piggy-front" ride).

(Right now as I'm typing Grace and I are in the office listening to Miles on the baby monitor singing to himself in bed upstairs - he sounds so cute.)

On Tuesday before we left Seth, my mom, and I took a walk along the lake. Seth showed me the cave he had found the previous day and the fence he had constructed in front of it. He also showed me the warm spots that he and my dad had found by the lake edge near the hot springs source. It was nice to see him excited and cheerful.

Some pics: http://remmel.shutterfly.com/2103

Ethan

Good Friday

Seth and Miles have been having fun playing with Grandpa and Grandma. Paper airplanes have been popular. Seth folded a boat from a regular piece of paper that stayed afloat in a pot of water for two days - I thought that was pretty impressive.

Friday was a nice sunny day here. My mom and dad and I had breakfast at Harris Ave Cafe (we're getting to be regulars there). Later my dad and I drove down Chuckanut Drive to Larrabee State Park and hiked up to Fragrance Lake - a nice walk through the woods with an overlook of Chuckanut Bay along the way and a pretty little lake at the end. That evening we all (Grace, Miles, Seth, Grandma Kathy, Grandpa Chuck, and I) had dinner with the Wangs (Grandpa Frank, Grandma Martha, Gene & Jamie & Jordan & Jackson, Gary) at Grace's parents' house in north Seattle. Grace's mom made a delicious feast, my mom brought a yummy pear dessert, and Gary provided "red velvet" cake. The three older boys played well together, and Miles orbited between them and Grace. We opened presents. Grace's brothers got me a sweet Rondo Celtics shirt and two Patriots caps. I think everyone had a really good time - I know I did. Thanks to the Wangs for hosting us! We hope to return the hospitality when my sister's family is here.

This morning my mom and dad and Seth and I and our neighbor Gene went to the monthly Swedish pancake breakfast at the Sons of Norway hall (we're also getting to be regulars there!). Afterward I borrowed Gene's pickup truck (thanks Gene!) and got a Christmas tree. Seth picked out a beautiful 6-foot noble fir and my dad and I set it up in the dining room and Miles helped us decorate it.

Some pics of all these doings: http://remmel.shutterfly.com/2069

We're off to Harrison Hot Springs in BC tomorrow afternoon through Tuesday. I was a little tired today, perhaps from all these fun doings, but the hot springs are a good place to relax and rejuvenate.

Ethan

Chemo update

My mom came with me to my chemo infusion, as she usually does. Compared to the old infusion center out on Cordata, the temporary one at the hospital is slightly closer to us, but more cramped and lacks windows. Fortunately the nurses are the same and they are all really nice. If I live long enough, I may get to experience the new infusion center that PeaceHealth is building as part of a new integrated cancer center near the hospital. It is supposed to be nice and open in late 2012.

Although I don't enjoy the chemo itself, I enjoy the way it has become a regular quality time for my mom and me to spend together. We talk and read until I space out. In addition to the chemo drugs, they give me a drug called Lorazepam (brand name: Ativan) to relax and make the time go by quicker. I like this drug. After getting it today, I was having strange but pleasant daydreams mixed with snippets of the conversations of the patients around us. I have Lorazepam pills at home, but they don't seem to have the same kick as the IV form. The doctors seem willing to give me any sort of "chill pills" that I want, if anyone has any other recommendations (I have Xanax too). Fortunately I haven't felt the need to take any of them lately, as I haven't felt overly stressed. That's probably in part because I've been feeling relatively good, and also the Sertraline (brand name: Zoloft), which seems in me to induce a "whatever" reaction to many things, for better or worse. Dying? Whatever. Work deadline? Whatever. Unfortunately the Sertraline also seems to cause me to clench my jaw (called bruxism, I learned), which gives me a headache and sore teeth, so I am going to try lowering my Sertraline dosage from 100 mg to 50 mg daily. I would also just like to feel more normal emotionally, as long as that doesn't include incapacitating despair.

After chemo I had an upset stomach/stomach ache, but fortunately that didn't stop me from eating and enjoying the delicious dinner that my dad made: a turkey meatloaf with lots of veggies in it, mashed potatoes (with assist from Grace), Brussels sprouts, and salad. Miles LOVES Brussels sprouts, which he sometimes calls "little cabbages." Grace was trying to get him to eat some of his other food in order to get more Brussels sprouts, which seemed amusingly backwards to us. Miles then entered into negotiations with Grandma Kathy (sitting on his other side) to acquire her last Brussels sprout. He was actually whispering in hopes that Grace would not veto the deal (she allowed it).

My mom made yummy baked apples for dessert, which reminded me of my childhood. After Miles's bedtime, we watched President Obama's cameo on the "Mythbusters" TV show.
http://dsc.discovery.com/videos/mythbusters-presidents-challenge.html

This morning my stomach feels better but I have a sore throat (the chemo drugs attack fast-growning cells such as cancer cells but also the cells that line your throat) and hiccups (side effect of Emend).

Ethan

Tuesday update

Saturday afternoon Grace, Miles, my dad, and I took a nice walk around Squires Lake. Sunday morning my mom, my dad, Seth, Miles, and I had brunch at Harris Ave Cafe. Sunday afternoon my mom, my dad, and I took a walk in the Stimpson Family Nature Preserve.

Monday my friends Catherine and Angela arrived. I know them from San Francisco, although Catherine now lives in Los Angeles. We walked down to Fairhaven and had lunch at the Colophon Cafe. They went grocery shopping and made a delicious dinner for all of us. Pics: http://remmel.shutterfly.com/2061

After dinner we talked and looked at some photos of Catherine, Angela, and me at Burning Man festivals in the 1990s.

Sadly, Catherine and Angela had to leave today to go back to LA and SF, respectively. Thanks to them for visiting! Thanks also to Jane and Gene for giving Angela a place to stay, as they have for so many of our guests.

I played basketball (half court) today. I felt good physically. Going out with my boy Troy tonight. Chemo tomorrow.

Ethan

Silent Nights

I've been co-sleeping with Seth the past few times he's slept at this house (vs. Lynn's house). I hesitate to admit this, because I know some people think co-sleeping with your children is weird, but I've always liked it. (It's more common in many other cultures, but it goes against the American ideal that children should be independent.) It's a little surprising to me because I usually have trouble sleeping with someone touching me (even Grace and I go to our separate sides of the bed when we're trying to sleep). But I love how Seth nestles up to me in his sleep. And it allows for some really sweet quality time in the evening and morning. At bedtime, I read him Tintin, using different voices for all the characters. (We have all 21 Tintin books, and we've read each of them probably 10 times, but we still love them.) Then I turn the light out and we cuddle and talk and tell stories and laugh for about half an hour. When we wake up, we usually cuddle and talk for a little while longer before getting up.

Ethan

Past few days

Thursday: went into work with Grace, which felt good. We had breakfast together at Avenue. I finished my book review for American Scientist magazine of Origins: How the nine months before birth shape the rest of our lives by Annie Murphy Paul. Played basketball (half court). Came home and hung out with Seth. Watched the Celtics beat the Sixers on last-second alley oop from Rajon Rondo to Kevin Garnett. Texted my condolences to George, a Sixers fan. Talked to Eric for a while. Grace, Mom, and I watched "The Office" one-hour Christmas special - funny.

Friday: played basketball (full court). That made three days in a row. Any day I can play basketball is worth living. Came home and hung out with Seth and Miles. Grandpa Chuck arrived - he is here through the New Year - yay! Seth and Miles were very happy to see Grandpa Chuck. I went out to MAN Night, organized by Chris Comeau (also there: Chris Roselli, Matt Miller, Marcus Guerra, Matt Katzenberg, and Joel Hiltner). We ate at Man Pies (new place downtown that has meat pies) and went to the batting cages at Inside Pitch. They continued on to bowling but I came home to put Seth to bed. Seth, Grandpa, and I watched a little "Mythbusters."

Saturday: Santa Train at Lake Whatcom Railway in Wickersham (far end of Lake Whatcom) - fun.
Pics: http://remmel.shutterfly.com/2044

Video from Lake Whatcom Railway (scroll down to bottom of page for link): http://myweb.facstaff.wwu.edu/remmele/miles

I was remembering when Seth and I rode on the Lake Whatcom Railway when he was 2. One of my favorite photos of him from that age:

Misc. thoughts

I had a strange sensation while driving the other day that the world outside the windshield was not real, but a projection like a movie on a screen, or a dream, and that if I crashed into something there would be no real consequences. I also felt like I should be able to skip or fast-forward through this part of the movie, because it was pretty boring. The feeling passed, but I wonder if anyone knows what I am talking about.

When I think about dying, I sometimes feel a sense of vertigo and pointlessness that reminds me of adolescence, when I (like many people) would think about how I am just a tiny speck in the vast sea of space, inhabiting an infinitesimal eyeblink of time. Given that everything on earth will eventually die, what does anything matter?

But it does matter, I believe. It's just a matter of viewing things at the right scale. Not too big, not too small, not too far into the future. At the scale of human beings and our lives, joy and pain do matter. Choices that lead to one or the other, for ourselves or others, are real and important. Maybe that's obvious, but when you're facing mortality, it's good to be reminded.

Basketball

I was tired this morning and lay on the futon in the play room upstairs for a while. But I often feel better if I play basketball, so I got up and biked to the university and played two games of full court (went 2-0). I liked my team: Max, Ben, Green, and Lee - all positive encouraging team players. I felt like our team played better than the sum of its parts. I had a couple of plays that felt good - my favorite was a turnaround jump hook bank shot from the baseline. But I also had some pretty lame plays. I'm so slow to jump now. A quick second jump used to be one of my strengths, but not lately.

Afterward I went to my office and worked on the book review that I am writing. It was nice to be in the office and get some writing done.

Ethan

No Jinx!

I would like to thank all the folks who have encouraged me to keep blogging. A number of people have let me know that they appreciate this blog. It makes me feel good to know that people care - thanks!

Fun Monday night. We had friends over, including some other New England expats, for a potluck dinner and to watch the New England Patriots beat down their rival New York Jets (45-3!). Our group had 8 young boys (and no girls - is Lake Whatcom water hazardous to X-carrying sperm?), which made for a little chaos but a lot of fun.

Today Grace, my mom, and I drove down to Seattle to meet with my second-opinion oncologist Dr. Whiting. We had lunch at Grace's parents' house - a delicious Taiwanese feast prepared by Grace's mom, who is an amazing cook as well as one of the world's sweetest people. It was nice to see Grace's parents, who recently returned from a family reunion in Taiwan.

The meeting with Dr. Whiting was fine. No real news. He agreed with our current plan to continue the FOLFIRI + Avastin + Zometa chemo combo for as long as it seems to be working and I can tolerate the side effects.

Speaking of which, I'm hesitant to say this for fear of jinxing myself, but this round of chemo has gone remarkably well so far (knock on wood!). Energy has been good, appetite has been good. Side effects have been minor (nosebleeds, some acne). I still have some soreness in my bones, but not too bad.

Most importantly, this has allowed me to spend some quality time with my kids, such as last Saturday with Seth. In fact, I had a great moment the other day where I realized that I had not thought about my physical condition in a little while - I had just been doing things, without constantly monitoring how my body was feeling and responding. It reminded me of my pre-illness life, when I took my health for granted. What a blessing it was to not have to think about my health. I'm so sick of thinking about it now.

Over the past few days, as I've been feeling relatively good, I've had some moments of hope for a longer-term future. They feel like glimpses of blue sky after weeks of overcast weather. Through these holes in the clouds I see Grace and myself older, together, laughing about that crazy time when I was so sick. I see myself going back to work. I see my sons as young men, proud, upright. The feeling is rapturous, but fleeting. The clouds come together again.

What if I did get better, at least for a while? Would I feel a little guilty, in a weird way, after making such a big deal about dying? I suspect my friends and family would forgive me. :-)

Ethan

Daddy Day

I spent all Saturday with Seth and it was great. In the morning Seth, my mom, and I went to a science talk for kids at WWU about volcanoes by a professor in the geology department. She was a fun and enthusiastic speaker and after the talk we went outside where she demonstrated the principle of escaping gas bubbles by using liquid nitrogen to blow apart a garbage can full of water - pretty excellent!

After that we stopped by the holiday festival at the ferry terminal and saw the gingerbread house competition for charity (and also the Jantzen family). Over to the farmers market, where we had lunch (Indian food) and watched the always-entertaining Jules the Juggler. Up to the Pel'meni place on State St so my mom could try the Russian dumplings (she approved). Over to Mallard Ice Cream for cones and some pints to take home. Home to catch the end of the Duke-Butler basketball game (Duke won, with Eric and his Duke buddies in attendance). Gene came over and hung out with my mom, Seth, and me - sharing wine, cheese, and stories.

In the evening Grace, Miles, Seth, my mom, and I went over to our friends Kristi and Mark's house to have dinner with them and Mark's daughters Sara and Meaghan and to watch the Apple Cup (annual rivalry game between the University of Washington Huskies and the Washington State Cougars football teams). Mark made delicious lasagna and apple pie (very appropriate). Huskies won, with local favorite son Jake Locker throwing the winning touchdown in the final minutes. Seth and Miles played with Legos. I wrestled, cuddled, and tickled with them on the couch, which felt really good. I love when kids are squealing "No, no, don't tickle me!" but rushing back for more.

Pics from Kristi and Mark's: http://remmel.shutterfly.com/2031

Seth slept at this house for the first time in while, which was really nice for me and I think for him as well. This morning Grace, Miles, Seth, and I walked down to Fairhaven and had a nice brunch at the Harris Ave Cafe.

Ethan

Friday report

Another good day. More mellow, email, errands. Played poker in the evening, which was fun, even though I lost money. Good group of guys.

Planning to spend today with Seth, looking forward to that. Saturday as a "Daddy day," like it used to be. Would be nice to get back to that, more of a predictable schedule. Of course my health does not always cooperate predictably, but let's hope for the best!

Ethan

A good day

I had chemo Wednesday afternoon and am still carrying the chemo pump with its continuous infusion of poison through a tube into my chest port (the pump comes off this afternoon - yay!). I couldn't sleep hardly at all Wednesday night for some reason. And yet yesterday (Thursday) I felt the best physically and energy-wise that I have in I don't know how long - maybe even since I got sick. I don't understand it but I'll take it. Don't look a gift horse in the mouth.

Grace and I dropped off Miles at his child care center and then had breakfast together at our favorite cafe, Avenue Bread & Cafe in Fairhaven. I took Seth up to WWU at noon to shoot hoops at Carver gym, which was fun for both of us. While there, I saw Tony Dominguez, associate head coach of the men's basketball team, and mentioned that we were planning to go their game that night. Tony generously offered to comp us four tickets to the game. Seth and I had lunch at the university (smoothies and Chinese food) and then I dropped him off with my mom and rushed back to campus to attend a meeting on the progress of the graduate students in the experimental program, which I advised until this spring, when I passed on that role to Kate McLean. It felt really good to do something in my professional context and to interact with my departmental colleagues, who are also friends. Picked up Grace from work and Miles from child care. Seth played Legos and computer games (Crazy Machines and TRS train simulator). Delicious dinner at home (thanks again Mom!) with Grace, Seth, Miles, and my mom.

After dinner Seth and I went to the men's basketball game at WWU (on the same court we had played on earlier). We met my friends Ben and Troy there. WWU beat Montana State-Billings 80-72. Seth enjoyed the game and all the little prizes they give out and contests they do (paper airplane toss, Bingo, etc.). After the game I dropped off Seth with Lynn and then Troy, Ben, Ben's girlfriend Marisa, and I went out to the Copper Hog gastropub downtown. After drinks and my second dinner there, Troy, Ben, and I continued the evening at Rumors, the local gay and lesbian club, which like so many such places is infiltrated by straight people because it's the best place to dance in town. We danced - it was 80s night, which was totally excellent - the music of my youth (e.g., Tiffany's "I Think We're Alone Now," which I thought was cheesy at the time but is fun to dance to now, "99 Luftballons," New Order, "Sweet Dreams Are Made of These," "Pour Some Sugar on Me," etc.). We also played air hockey - Troy won our round-robin tournament and I finished last - clearly I haven't been spending enough time in bars. Home around 1 AM (late for me!). I feel a little tired today, but not bad.

A good day, no qualifiers needed.

Ethan

100th Post

I just noticed that this is my 100th blog post. Seems like a lot. I feel a little self-centered writing a blog all about me, but a lot of people have let me know that they appreciate the updates, so I plan to keep doing it. I think it's therapeutic for me too. And it will provide a record of this time if later my sons want to know what it was like.

I had chemo this afternoon but I actually feel surprisingly OK right now. The yucky side effects often take a little while to kick in. My mom made a yummy dinner for us (her, me, Grace, Miles, Seth, and John Rybczyk). John came over to watch the Duke-Michigan State basketball game (Duke won by 5). John went to Michigan State and I was rooting for Duke due to my friend Eric. Seth and Miles were happily playing paper airplanes while John and I were watching the game. For dessert we had Mallard ice cream with dark chocolate sea salt caramel sauce that I brought Grace from North Carolina (although the product is from Maine - Stonewall Kitchen). After the game, Eric and I had some good phone time breaking down the game and generally geeking out about basketball. We didn't hang up until 10 PM here, which is 1 AM there.

Sarah forwarded me a great cell phone photo from my visit to San Francisco. We are at Sarah & JK's house (which feels like a second home to me) watching the Giants in the World Series (still hard to believe they won!). You can see Sarah, me, and Eric - the three original roommates at the 35 Coso house - which was one of the most fun times of my life - definitely the most fun as a single adult. This pic captures such a happy moment. I have it as the background on my laptop now.