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.

New life

Congratulations to my cousin Annie, who is expecting her second child! It's amazing to me that Annie, who I can still see as a goofy cute blonde toddler, is a grown woman, with a nice husband and kids and everything. Their baby is due June 26, near my birthday of June 28.

Ethan

Update, basketball

Met with my oncologist Nestor this afternoon. He said I shouldn't freak out too much about the increased CEA number because it's too soon to tell whether the chemo is working and may bring that number back down. I have chemo tomorrow afternoon. I hate the chemo. It feels like going to your own execution - except they don't kill you, just make you really sick and then send you home. And the people are very nice and cheerful.

To make myself feel better, I played basketball yesterday and today. Two games of full court yesterday and about four games of half court today. I'm tired now, but the part of my tiredness that's from basketball is a good tired. I figured I should play while I have the chance, since I will be wearing the gross chemo pump for the next few days.

I used to be pretty quick on the court. Not Chris Stark quick, but pretty good for our game (Chris is the fastest guy in our game). But now I am soo slooow. I'll go into a move that used to work well, and halfway through I'm thinking: this is taking a long time, and it's not working so well, as the defenders go and get a drink and come back. And I used to have pretty good hops. In my 20s, before my knee surgeries, I could dunk - not bad for a 6'2" white guy. But now any rebounds I get are due to position, not height off the floor. I have to "do my work early," as they say (work to get good position before the ball goes up).

But speaking of quick and hops, Lucky Tedrow was on a tear today. He drained his first three three-pointers. When he got the ball again, he pump-faked his defender into the air and drove around him. With a mighty grunt he launched himself from just inside the foul line. As he soared through the air he adjusted the velcro flaps on his snazzy shoes, just before slamming the ball through the hoop, hanging on the rim, and inviting his erstwhile defender to taste his salty nuts. Personally I thought that was a bit much, but if I could make that play I suppose I'd talk some smack too.

But seriously, I have felt very supported by our little basketball community. A lot of the players have let me know in little ways that they know about my situation and they're pulling for me, which I appreciate.

As my friend Eric and I have talked about (and he wrote about in his excellent novel "Winners," which I highly recommend http://www.amazon.com/Winners-Eric-B-Martin/dp/1596921617 - perfect for every Christmas stocking!), pickup basketball friendships are a funny thing. Most of these guys I rarely see off the court. And yet in some ways we are close - for the past 8 years I have sweated, competed, collided, argued, made up, high-fived, and celebrated with them.

Ethan

Yikes

This morning I got the results from my blood test from last Wednesday 11/24. The good news: my white blood cell, red blood cell, and platelet numbers were all good, in the low normal range. The very bad news: my CEA has shot up to 23.1 (from 5.0 on 11/3 and 1.1 on 10/13 - higher indicates more cancer activity). I meet with my local oncologist tomorrow (Tuesday) afternoon and my second-opinion oncologist in Seattle next Tuesday 12/7, so I'm sure we'll discuss the implications of this. Through a connection provided by JK, I have also started talking to a doctor in San Francisco who is a sort of private medical investigator for hire. He has given me some ideas about possible backup treatment options.

Ethan

Harrison Hot Springs

Grace, Miles, Grandma Kathy, and I just returned from a very relaxing weekend at the Harrison Hot Springs Resort in BC. I had never been there before but I would be happy to go back anytime. Thanks to Grandma Kathy for making the arrangements and treating us to a nice mini-vacation.

We drove up Friday afternoon. The drive reminded me of the annual Memorial Day camping trips that Seth and I have taken to Chilliwack Lake (in the same area of BC) with Lana Frazier and her group of friends. After checking into the resort, we wasted no time in trying out the pools heated with hot springs water. There are five pools (outdoor family pool, outdoor adult pool, outdoor lap pool, indoor pool, indoor hot tub), as well as steam rooms and a spa. The hot springs are supposed to have natural healing powers, and they certainly made me feel better. That evening we enjoyed a very nice dinner at the resort's "Copper Room." Miles was mesmerized by the live jazz band and even danced a little.

The next morning we took a walk along the lakefront. The weather was mostly overcast while we were there, but the mist on the hillsides and the occasional glimpses of snow-covered mountains were very pretty. More soaking in the hot pools ensued. In the afternoon I took another walk along the lake in the other direction. We had dinner at a Thai restaurant with a friendly proprietor. We were so cooled out from our hot soaks that the adults struggled to stay awake as long as Miles.

More eating, walks, and soaks this morning before we had to leave our little hot springs paradise and return to reality and the U.S.A.

Miles enjoyed the hot pools but his favorite activity may have been pretending to call Grandpa Chuck on the phone in the hotel room, which he did approximately 1,000 times. His simulated conversations with Grandpa Chuck were quite cute. Miles claims that he misses Grandpa Chuck about 100 times daily. The rest of us are eager for Grandpa Chuck to arrive here (on December 10) so we can stop hearing about it. :-)

Pics from the trip: http://remmel.shutterfly.com/2008

A video from the trip (scroll down to the bottom of the page for the link): http://myweb.facstaff.wwu.edu/remmele/miles

Ethan

Thanksgiving pics

A few pics from yesterday: http://remmel.shutterfly.com/1999

Story

I have spent a lot of time lately wandering the tunnels of my memory. One story stuck in my head, perhaps because it has been so cold here lately.

The last night of our Alaska trek last August, we camped on a windswept plateau where the bush plane was to pick us up the next day. This was our guide's last trip of the season, and his tents were really summer tents, not ideal for early fall in the high backcountry of Alaska. The wind whipped through the mesh sides of the tents, and the temperature dropped below freezing that night. Seth and I shared a tent, and during the night Seth got out of his sleeping bag and into mine. Although we were squeezed in my mummy bag, I was happy to have his body warmth. However, Seth kept moving lower in the bag, seeking warmth, and I was worried that he was going to smother, so I kept unzipping the bag more so he could breathe, whereupon he would move lower in the bag. Eventually I had the bag unzipped to my waist and I was colder than when he arrived. Nevertheless, it's a happy memory, because I was with Seth and I love him so much. My love for him feels like a bright hot granite fire in my chest.

I wish that I would have the chance to do more camping with Seth and Miles. I would like to foster in them my love for the outdoors.

Ethan

Thanksgiving

I am thankful for my beautiful sons Seth and Miles. I am thankful for Grace and her love and support. I am thankful for my family, and especially my mom for all her help. I am thankful for my friends. I am thankful that I was able to go to San Francisco and North Carolina while I was feeling relatively good and spend time with my friends there. I am thankful that my dad and my sister and her family are coming here for Christmas. I hope I will be feeling OK then.

I am not thankful for some things. I am not thankful to be terminally ill at age 41. I'm not going to lie; it stinks. There are a lot of things I would still like to do, and I'm probably not going to be able to do most of them. That makes me really sad. I am most sad about not being there for my sons. They deserve to have their dad.

However, I still have my sons for now and they still have me. This afternoon I was cuddling with Miles and he was stroking my face (he likes to feel my whiskers) and he said "I love you so much." I know he is repeating what Grace and I say to him, but it was still very sweet.

The past couple of days Seth has come over to visit in the afternoon. I have been a little reluctant to have him visit when I am not feeling well, because I don't like him to see me sick, but I have found that seeing him actually makes me feel better, and it hasn't seemed to bother him. Yesterday he made me a beautiful drawing of a sailing ship. The picture says "To Daddy" and the flag flying from the ship's mast says "I hope you are Happy" and the name on the ship's bow is "Happy" and the fish in the water have smiley faces and the sun and clouds have smiley faces and there is a rainbow in the sky. It brought tears of happiness to my eyes.

When Seth came over this afternoon, Miles was crying and upset about having to go to bed for his nap. Without any suggestion from me or anyone else, Seth comforted Miles until he stopped crying, read him a book, took him by the hand upstairs, and put him to bed. I was very impressed.

Ethan

Happy Thanksgiving

Ethan here. Thanks Grace for your update. Sorry that I haven't posted lately. I haven't felt well enough to write, and haven't had much to say other than I have felt crummy since the chemo last Thursday. Tired, sick to my stomach, mentally foggy, unable to concentrate, sad, discouraged. I haven't had the mental or physical energy to do much besides sit around and feel sorry for myself. The pain in my bones seemed to decrease right after the chemo, but has increased in the past few days. The oxycodone wasn't cutting it anymore, so this morning I put on a fentanyl patch for the first time in a long time. After feeling more like myself during my chemo break, I hate feeling like a sick invalid again.

The weather hasn't helped my mood. It's been unpleasantly cold, icy, and windy for the past week.

However, I'm feeling better right now. The temperature rose above freezing this afternoon, and the snow is starting to melt. We had a really nice Thanksgiving dinner tonight at the Bunns' house. Thank you to the Bunns (Andy, Rebecca, Sam, Eli, Micah, and Rebecca's mom Pat) for hosting us (Grace, Miles, my mom, and me).

Tomorrow Grace, Miles, my mom, and I are driving up to Harrison Hot Springs in BC through Sunday. Lynn and Seth are driving down to Portland OR to visit her friends Tram and Dom and their twin babies.

Ethan

Thanksgiving

Hi Everyone,

Guest blogger Grace here again.  Even under difficult circumstances, on thisThanksgiving Day, we are thankful for friends and family, near and far, for their love and support.  As I look out the window, it's a snowy and blustery scene.  Beautiful, if not treacherous...but we're looking forward to dinner with the Bunns. 

I am thankful for Kathy's presence here; I know it's hard for her to be away from the rest of her family, even under the best of circumstances.  I am thankful for every additional day I get to spend with Ethan, and I am thankful for our beautiful kid Miles, who is so full of joy (even when he's testing my patience). 

On a more serious note, Ethan had an infusion on the 18th.  It had been about seven weeks since his last one, and I think his body is getting re-adjusted to the chemo...it has been kind of a rough week, lots of nausea and tiredness.  Kathy and I just try to be here for him, and wish there was more we could do.  Miles is always good for a laugh, though! 

Happy Thanksgiving!

With love,
~Grace

Post-chemo report

Good news: I feel like the pain in my bones has lessened. Bad news: I feel low energy, mentally foggy, upset stomach, a little grumpy, and just generally like sitting around and doing nothing. So I built a fire and am watching football (Go Patriots!).

Ethan

Update

Yesterday I had lunch with my friend Fred Wagner. Fred's architecture firm is Grinstad & Wagner in Fairhaven (http://www.grinstadwagner.com/index.shtml). I first met Fred when he drew up the plans for the renovation of our house and then reconnected with him when his son Sean was in Seth's class at Larrabee Elementary School. He did a great job of designing additions that expanded the functionality of our house while preserving the character. If anyone ever needs an architect, I would highly recommend him. He's also a very nice guy.

In the afternoon Seth came with me to my appointment with my therapist. I think it was helpful for him and for me to talk about our feelings about my illness together. And we were able to clear up one misunderstanding of his: that my illness was related to our trip to Mexico in March (an example of the "post hoc ergo propter hoc" fallacy - reminds me of Gary Hertz's logic class in high school).

In the evening my mom and I finished the movie "Get Him to the Greek," which was moderately amusing.

Last night it snowed a couple of inches here. It is sunny and pretty but cold today. Seth and Miles went sledding.

I am feeling kind of blah today. Just having a quiet day around the house, watching college football. Wisconsin beat Michigan. Yale lost to Harvard. Stanford is currently crushing Cal (Go Cardinal!).

Ethan

Another random thought about time

Another way to enjoy time is to not focus on the individual moments, in fact, to not focus on time at all, but only focus on the activity at hand. When you are completely engrossed in an activity (what psychologists call a "flow" state) you are just doing it (making Nike proud) and unaware of time. Basketball used to do that for me, which is one reason that I love it so much, and that it was very healthy for me mentally as well as physically. I would "wake up" at the end of a game and realize that I hadn't been thinking about my worries, my responsibilities, my endless to-do lists, etc. In fact, I hadn't even been thinking (self-consciously) about basketball - I was just playing it.

Basketball still does that for me, although awareness of my new physical limitations sometimes pulls me out of the flow state. And other activities work as well. Thinking about my North Carolina trip - when I was watching basketball with Eric, really watching intently, trying to see what was going to happen on each play before it happened - Eric and I sometimes simultaneously pointing toward the open man a second before he received (or sometimes didn't receive) the ball. I think of dinner with Eric and Meredith and their friends Jeff and Steph - interesting funny conversation over good food - I wasn't aware of being sick at all.

Ethan

Grace

I think Grace is the most beautiful woman in the world. To be clear, my perception of attractiveness is a multiplicative factor of physical beauty and how much I like someone. Since Grace scores a 10 on both categories, she gets a perfect score of 100.

When Gary and I pulled up to the house late last night and Grace opened the door to greet us, she looked literally radiant to me. Light was shining from her. OK, maybe she was just backlit by the entry chandelier, but the effect was angelic. If angels were smoking hot.

Ethan

Today

Chemo was fine. Boring but not unpleasant. I feel fine tonight, although I have to tote the crappy little chemo pump for the next two days, like an evil Walkman (that only plays Poison? although "Every Rose Has Its Thorn" is a pretty excellent power ballad...).

Seth and his aunt Shannon (who is visiting from Milwaukee) came over tonight. It was really nice for me to watch Seth and Miles playing together happily. My mom made a nice dinner for all of us. I got to read books, sing songs, and cuddle with Miles at his bedtime.

My mom and I started watching the movie "Get Him to the Greek" but had to stop to watch "The Office." Good episode tonight, funny.

Happy Birthday to Linda, my sister-in-law!

Ethan

Back in the City of Subdued Excitement

Meredith took me to the airport yesterday (thanks Mer!). My flight from Minneapolis to Seattle was delayed, so I missed my shuttle bus to Bellingham. Grace called her brother Gary, who is living in Seattle, and he picked me up and drove me all the way home to Bellingham, then turned around and drove back. Pretty gosh-darn nice, but typical of Grace's family in my experience. I'm glad that Miles will be exposed to their values of generosity and loyalty to family, and I hope that he absorbs them.

I got to cuddle with Miles this morning before he went to school. Now I am off to chemo with my indefatigable mom.

Pics from my NC trip: http://remmel.shutterfly.com/1972

Ethan

Ethan's back!

Ethan made it back to Bellingham late last night, thanks to my brother Gary.  THANK YOU Gary for picking him up at Sea-Tac, then driving him all the way to Bellingham!  Ethan had some great snuggle time with Miles this morning (they had quite a serious conversation about farm animals and zoo animals).  And then FOLFIRI + Avastin infusion today...

Send lots of good thoughts and healing energy our way today! 

~Grace

A thought about time

Is a given period of time long or short? I think it depends on how you perceive it. A period of time that might seem short can actually seem long if you perceive it as many many individual distinct moments. That's how I sometimes make my time seem longer - by trying to be aware of each moment. When I feel good, or even just OK, this can make me feel better.

Ethan

Update on my physical condition

The pain in my bones is getting slowly and gradually worse. I have near-constant dull pain that shifts around to different places, mostly hips and shoulders, arms and legs, and back. Last night I felt it in my left hand for the first time. I have sharp pain with certain movements, particularly in my left shoulder and right hip. My back has stiffened to where some movements are difficult, such as putting on socks or getting in and out of a car. The pain sometimes makes me tired and/or cranky. I can mask the pain with oxycodone pills so far, although I may need to put a fentanyl patch back on if the pain gets bad enough to prevent me from sleeping.

If left untreated, I would guess that I would become incapacitated by the pain and/or the painkillers before very long. That's why I am restarting the chemo. I want to be functional for my dad's visit in December and my sister's family's visit at Christmas.

I keep giving myself goals to shoot for. At first, I just wanted to make it to the Red Sox game in July. Then it was our Labor Day trip to Orcas Island. Then it was San Francisco, and then North Carolina. Now it's Christmas with my family. Then it would be to make it through Seth's basketball season at the YMCA. I'm reluctant to set longer-term goals because honestly I don't know that I will be able to reach them, and I don't want to feel disappointed.

Ethan

Last day in NC

Yesterday Eric and I went to the YMCA and played basketball. There was no pickup game to play in, so we shot around and played some one-on-one games (Pressure, Around the World, 21). It was fun, although it would have been more fun to play together on a team and run some of our old tricks. Thanks to Meredith for dropping us off and picking us up. Home for lunch, and a nap for me. In the later afternoon Eric's sister Abby and her son Elijah Lee and Eric's mom Joyce came over. Joyce stayed for dinner, as Eric made a delicious vegetable curry.

After dinner Eric and I went to the Duke basketball game against Miami of Ohio. We sat at center court, but high up. Later, after some people left, we moved down closer to the court. Eric's friend Steph and her son Cole were there and sat right behind the scorer's table next to the court. Duke shellacked the RedHawks 79-45, and only a late run by Miami made it that close. Duke was in second or third gear most of the game, and Miami couldn't get out of first. Even their own coach was laughing at their futility.

After the game, as we walked across campus, among the Gothic buildings, the night was warm and humid.

This morning I said goodbye to Joaquin and Lucy as they went off to school. I'm here with Eric and Mer now. By the way, thanks to Eric for taking time off work while I've been here, so we could have more time together. This afternoon I fly back to Bellingham, arriving late. Tomorrow morning I have chemo. I am going to do the FOLFIRI drug combo again, as my second-opinion oncologist confirmed that we may not have exhausted the efficacy of that combo, and the side effects of the other combo (FOLFOX) sound worse to me.

Ethan

Random thought

I know it's easy to be unhappy about my health situation, but one way to think about it has helped me: were it not for the miracles of modern medicine, I would have died a horrible painful death back in May. So if you think about it that way, everything since then has been bonus time, gravy on the cake. And that includes a lot of good times and happy moments. So that's something to be thankful for, not sad about.

Ethan

Durham day

This morning Eric, Mer, Lucy, and I took a nice walk along the Eno River in Eno State Park. The fall colors - yellows, oranges, reds - were very pretty. We had lunch at "Hog Heaven" - North Carolina-style BBQ. We came home and most of us, including me, took naps. In the late afternoon Eric, Joaquin, and I took a bike ride on a nice paved path - a converted railroad spur. Babysitter for Joaquin and Lucy, and Eric, Mer, and I met their friends Jeff and Steph for dinner at a gastropub called Federal. We walked home. The night was warm and still.

Ethan

Monday morning

Yesterday we (Eric, Mer, Joaquin, Lucy, and I) had lunch with Abby, Mike, Elijah Lee, and Joyce (thanks Joyce for lunch!). In the late afternoon Eric and I went over to Duke and walked through campus on the way to Cameron Indoor Stadium. Cameron is full of memorabilia and posters about the successes of Duke athletics, particularly basketball. We saw Eric's friend Jeff and his son Cole there. Our seats were pretty high up in the rafters, but Cameron is so small that we weren't that far from the court and could see perfectly well. The Duke student section is next to the court and fun to watch, with their chants and routines. As expected, Duke crushed Princeton (97-60). We got to see the leading Player of the Year candidate, Duke forward Kyle Singler, and one of the most-heralded freshmen in the country, Duke point guard Kyrie Irving, who has star written all over him.

This morning Eric, Lucy, and I walked with Joaquin to his school. Now Eric is playing Uno with Lucy, who is home on Mondays.

Ethan

Good News

I'm in Durham NC. The sky is blue (Duke blue?). Joaquin and Lucy are playing on the back deck with the neighbor's kid. Blues on the stereo. Eric's sister and mom are coming over for lunch. Eric and I are going to the Duke game tonight - the season opener! Eric got tickets from a friend of his. Whoo-hoo! I miss my people back in B'ham, but I'm happy to be here.

Ethan

Bad News

We just got back from our appointment with Dr. Nestor. The PET scan results confirm what I suspected from the increased CEA number and the pain that I've been feeling in my bones for about a week. The PET scan showed renewed cancer activity in my bones in multiple locations. The activity level is lower than it was in June, when I was hospitalized, but much higher than it was in August, when it was almost undetectable. This is obviously disappointing but not surprising. We were hoping for a longer period of inactivity, but we only got about seven weeks since my last full chemo in late September. I'm not happy about this news, but I don't feel too bad, because I've been mentally preparing for this possibility all week, although of course hoping for better news. The Avastin only was obviously not sufficient to keep the cancer down, although who knows whether it would have cropped up again anyway if I had continued with the full chemo regimen. But I don't feel that was really an option anyway, because the fatigue had become so bad that it was really pointless to continue. So I'm perfectly at peace with my decisions. I was able to take and enjoy my trip to San Francisco, which was really wonderful. I think of it happily pretty much every day.

I am still planning to take my trip to North Carolina, leaving tomorrow (Saturday) and returning late Wednesday. I will bring plenty of pain meds and it should be fine. I'm not worried about it. I'm just glad I decided to go sooner rather than later. I will see my best friend Eric and his wife Meredith and their kids Joaquin and Lucy and Eric's sister Abby and her husband Mike and their son Elijah and Eric's mom Joyce (his dad Joel is working in Prague). Eric and I have tickets to the Duke game against Miami of Ohio (where my former master's student Joel is now getting his PhD) on Tuesday night. We may also try to get tickets to their game against Princeton on Sunday night (their season opener). Duke will probably crush both opponents, but I'm looking forward to witnessing the atmosphere at Cameron. There aren't many teams that would be competitive with Duke (ranked #1 in the preseason, defending national champs, and arguably more talented this season).

In other news, the Parkes (Michael, Teresa, and their son Will) came over last night for dinner and to watch the Celtics (who beat the Heat in Miami). Michael is also a Celtics fan. I am planning (hoping) to co-coach basketball with Michael at the YMCA again this January and February. Will and Seth will be on the team again. My mom made a delicious Indian dinner for us all. I gave Seth the gift I got him in San Francisco - a kit with which you can make various solar-powered contraptions. Seth and Will had fun building with that. I also gave Seth the iPad which my friends Deepak and Shareen very generously gave him. I loaded Labyrinth and a race car app on it and Seth enjoyed those.

Today I played basketball at the university - three games of full court. I played full court Monday, Wednesday, and Friday this week, which would be a good week even before my illness. I rewarded myself with a Acai smoothie, as I usually do.

Unfortunately, I may not be able to enjoy smoothies much longer. Dr. Nestor recommended that I try the FOLFOX chemo regimen. One of the side effects is peripheral neuropathy (numbness, tingling, and/or burning sensation in extremities) and painful sensitivity to cold, including cold beverages. I haven't decided whether I want to do that. I will take the weekend to think about it.

Miles has been very fun to cuddle with this week.

OK, I'm going to eat dinner and then go play poker - that should be fun and take my mind off things.

Ethan

Wednesday update

I had my PET scan this morning. I probably won't know anything about the results until our meeting with Dr. Nestor Friday afternoon. I'm glad to be done with the pre-PET scan diet (no sugar or carbs, just protein and water).

I biked to the university today and played basketball - one game of half court and two games of full court. I was matched up with Marko (the Croatian Sensation) twice and Tony once, both very good players, so that was a good challenge. I'm still soft, stiff, and slow, but it was fun.

On Monday after basketball I walked by the overlook by the student union that looks out over the bay. The view was especially dramatic that day. There was a dark storm cloud over the bay, and you could see rain falling from it in dark streaks. But it was sunny where I was, and you could see blue sky and big billowy white clouds beyond the storm cloud.

I've heard that overlook called the "$5,000 view" because supposedly that's where they take faculty recruits before telling them that their pay would be $5,000 less than at comparable institutions. In my case, it was the $26,000 view, because San Jose State had offered me $66,000 (still more than I make now), whereas my starting salary at WWU was around $40,000 (less than my first job out of college with Oracle). Still, I'm very happy with my decision. I've had a great experience at WWU, and with the psychology department in particular. I think we've managed to hire people who are not only very talented in their fields, but very nice people, which makes it a great place to work. And it was never about the money anyway - if it had been, I wouldn't have left tech. Being a professor gives you the freedom to pursue your own interests and largely set your own schedule. The currency of the realm is ideas, rather than money, and I like that.

Ethan

PET scan

Hi Everyone,

Send lots of positive thoughts our way today; Ethan and Kathy are at Mt. Baker Imaging now for E's PET scan. 

~Grace

Good news/bad news again

Good news: today I biked to the university and played basketball - two games of full court. It was fun and I wasn't that tired afterward.

Bad news: I am starting to feel pain in my bones that reminds me of the pain I felt back in May and June when I was hospitalized. It isn't that bad yet, but I can feel it in several places. I was woken up last night around 12:30 am by a sharp pain in my right femur. I took an oxycodone for the pain, not realizing that it would keep me from sleeping, so I was up most of the rest of the night.

I have a PET scan on Wednesday morning. It takes at least a day to get the results. I meet with Dr. Nestor late Friday afternoon, so I will probably get the results then. We will talk about them and the increase in my CEA blood marker. Needless to say, I am concerned about what the PET scan will show. We'll see. Let's hope for the best.

Ethan

Weekend update

I felt a little tired and achy this weekend. On Saturday I watched Stanford beat Arizona to move up to #6 in the BCS standings (Go Cardinal!). That evening Grace and I saw the movie "Waiting for Superman" about public schools and education reform efforts in the U.S. On Sunday we had breakfast with Jane and Gene at the Harris Ave Cafe in Fairhaven. That afternoon we met the Bunn family at Zuanich Park on the waterfront and the boys (Seth, Miles, Sam, Eli, and Micah) played together.

My exciting news: I am going to visit Eric and Meredith in Durham NC this coming Saturday through Wednesday. I am looking forward to seeing them and their kids Joaquin and Lucy. Eric and I are planning to go to at least one Duke basketball game while I am there. I have always wanted to see a game at Cameron Indoor Stadium, Duke's famously small, loud, and crazy home court.

Ethan

Seth's loose tooth

Yesterday I biked to the university and played basketball again. Four games of half-court. In the afternoon we visited with Gene and his daughter Christina and her husband Josh and their three cute kids: Eli, Seth, and Ephraim (who is 8 months old and so super-cute that I wanted to steal him).

Today I spent the day with Seth and Lynn. We went out to Wasabee Sushi for dinner. Seth had trouble eating the sushi (his favorite food) because his top front tooth was so loose. After dinner, we went over to my house and Seth and Miles played together. Finally Seth popped out his loose tooth. He was happy and proud about it. A couple of pics (warning: the pics are a little gross): http://remmel.shutterfly.com/1969

Ethan

Thanks

My friend George's mom Elizabeth, along with George and his sister Ellen, sent me a beautiful shawl knitted by members of Elizabeth's church. I keep it by my favorite sitting spot, the red loveseat in the TV room, and I love to wrap it around me. It is soft and warm and cozy.

My friend Jonathan designed, printed, and sent me a poster with pictures of and quotes from some of my good friends in the San Francisco area. I hung it on my bedroom wall. I like to look at it before I go to sleep and imagine that my friends' love is wrapped around me and keeping me safe.

Ethan

Update on WWU men's golf team

After their fall schedule, the WWU men's golf team is ranked #1 in NCAA Division II in one poll and #4 in another. Their spring schedule starts with a tournament Feb 2-4 in Hawaii, where they will play against the top Division I schools, including #1 Oklahoma State. That should be a fun trip and a good challenge for the Vikings!

A few recent photos of Miles

http://remmel.shutterfly.com/1964

Good news/bad news

This morning I got my Avastin infusion. My mom accompanied me to the oncology/infusion center. Afterward she dropped me off at the university. I stopped by my office and then played basketball. This was my second attempt to play full-court basketball. The good news: I felt better than the first time. I played two pretty long games of full-court. I didn't get as tired as quickly as before. I even ran a few times, as opposed to just jogging. I was happy with how I played. Good shooting percentage (helped by the fact that I didn't take any outside shots), a good steal, a good block. I walked home (it was another beautiful sunny day here). I was tired and had to rest during the afternoon, but recovered in the evening.

The bad news: I called and found out this afternoon that the preliminary CEA result from my blood draw this morning was 5.0, up from 1.1 (lower is better) on October 13 and above the normal range of 0-3 for a nonsmoker. I'm not sure how big a deal this is, but it's definitely not a good thing. I think it means that the cancer, after being knocked down by the chemo, is waking up and starting to stir. Needless to say, this makes me nervous. I try not to think about it too much.

My mom made a nice dinner for her, Grace, Miles, and me. Miles was cute at the dinner table and afterward. I watched the end of the Celtics game, as they beat the Bucks in overtime and Paul Pierce scored his 20,000th point as a Celtic (third-most ever after Havlicek and Bird) while sealing the game with free throws. I'll be happy if the aging Celtics can mount another charge in the playoffs (I think they would have won last season if Kendrick Perkins hadn't gotten hurt at the end), and I really hope someone, anyone beats the Lakers. In the late evening I went over to Lynn's house and read Tintin to Seth.

Ethan

Lauren's visit

Today my friend Lauren visited with her daughter Sarafina (6 months old), sister-in-law Jennifer (who lives in Olympia), and mother-in-law Kristy. Lauren and I were friends during our undergrad years at Yale and then were in the PhD program in psychology at Stanford at the same time. She now teaches at Wittenberg University. Her husband Cameron and son Cade (almost 3 years old) were back home in Ohio.

We had lunch here at the house and then Lauren and I walked down to Boulevard Park and the Taylor Street boardwalk. We sat on a bench in the sun. It was nice to chat and catch up. Then we picked up Miles from day care and went down to Marine Park and played on the beach. Then Lauren and her family members had to drive back to Olympia.

Tonight I read Miles the book I got him in San Francisco (a pop-up book about bugs from Chronicle Books - thanks Lindsay for the employee discount!). Then Miles, Grace, and I snuggled until it was time for him to go to sleep. He is one cute little guy.

Ethan

Epilogue

Yesterday morning I packed up and said my goodbyes to Sarah, Jonathan, Toby, and Jacob - thanks again to them for hosting me. I walked over to Angela's house, where she gave me a loaf of freshly-home-baked bread. We went out to lunch at Ti Couz, a crepe place that I like, and then she drove me to the Oakland airport (thanks Angela!). I finished the book "Neurodiversity" on the plane - it's about the positive sides of mental differences that we characterize as disorders. Grace and Miles picked me up at the Bellingham airport. On the way home we listened to the Giants game on the radio and heard Edgar Renteria's home run. I watched the last few innings at home, as the Giants won the game and their first World Series since 1954 and their first in San Francisco. Yay! I'm sorry I missed the celebration in SF but glad that I got a taste of the excitement while I was there.

I didn't take a lot of photos when I was in the Bay Area, but here is a link to the ones I took: http://remmel.shutterfly.com/1934

I was thinking about our group of friends that formed in San Francisco in the 1990s. I feel fortunate to have fallen in with a group who are not only smart, interesting, talented people but loyal, generous, and compassionate friends. I'm glad that the friendships we forged in our twenties have lasted into our forties, through moves, kids, and other changes. It's interesting to think about how the course of our lives sometimes hinges on small coincidences. If Eric had not seen and responded to JK's ad for a roommate posted at Rainbow Grocery in 1992, then Eric, Michael, and I (the Maine boys) would probably never have met JK and his Cornell crew, including Peter, through whom we met Leo, or Sarah, through whom we met Lindsay, Tami, and many others. When Eric and I were looking for a third roommate for the Coso house in Bernal Heights in 1993, we would not have known about Sarah, who had only recently started dating JK. The period I lived with Eric and Sarah at Casa Coso was one of the most fun times of my life.

I'm back in Bellingham now, where it is actually nice and sunny today. My mom returned to Bellingham late last night from her visit to Maine and Rochester. I am feeling better and better these days, although I still have less energy than normal and need to take periodic breaks to rest. I have become very economical in my activity - no more movements than necessary. My weight had never varied more than a few pounds since high school until this year. I lost 32 pounds (!) when I was very sick in May and June, but with the help of my mom's cooking I've regained all that and then some - I'm actually over my pre-illness weight now.

Ethan

Too much awesome

Although I had nothing planned in advance, yesterday turned out to be one of my favorite days of this trip. It was a beautiful warm sunny day. In the morning Jonathan and I took a walk around Land's End, with views of the ocean, the Golden Gate, and Marin. In the afternoon I stayed home with Toby (who is sick) and Jacob while Jonathan and Sarah enjoyed a rare opportunity to surf together at Ocean Beach. I was happy to be able to do something for them after everything they have done for me. Not that it was any hardship for me - I relaxed, sat in the sun, and read "A Mouth Like Yours" by our friend Dan Duane. In the late afternoon Sarah and I took a very pleasant walk together around the neighborhood and had a chance to chat. It was warm enough for me to wear shorts for the first time this trip. In the evening I went over to Deepak and Shareen's house to watch the Giants game. I got to see their daughter Rowan, Shareen's sister Roshi, and to meet some of their other friends. The game was great, with the Giants winning to take a 3-1 lead in the World Series. They have a chance to close out the series tonight, but unfortunately I will be on the plane back to Bellingham during the game, although I should be able to catch the end of it when I get back, barring any delays (knock on wood).

This trip has been too much awesome (as the Giants' closer Brian Wilson referred to his orange shoes). It has restored my interest in living. That is, it has renewed my faith that I can truly enjoy life still. I has been so awesome that I am a little worried about going back to Bellingham. I will miss all my dear friends here. I would like to come back, with the kids next time. With the direct flights on Allegiant Air from Bellingham to Oakland, it is a relatively easy and inexpensive trip.

I will have to keep busy when I get back to forestall an emotional letdown. Fortunately my friend Lauren is visiting Bellingham tomorrow, so that should be fun. I agreed to write another book review for American Scientist, so I can concentrate on that. And I would like to try to get into better aerobic shape, so I can play full-court basketball. Speaking of basketball, I signed up to co-coach basketball at the YMCA in the winter with my friend Michael Parke (his son Will is around the same age as Seth) - that will also give me something to which I can look forward.

Go Giants!

Ethan

Aftermath

Yesterday Grace and I drove down to Stanford and had lunch with my PhD advisor John Flavell and his wife Ellie (thanks John and Ellie for lunch!). Afterward we took a walk with them and stopped in and saw Eleanor Maccoby, another retired Stanford developmental psychology professor - she's 93 and still sharp as a tack.

Back to Sarah & JK's, where some people gathered to watch the Giants game (they lost). More people arrived later for a party. We had Mexican food from a local taqueria and ice cream from Mitchell's. There were many of my favorite people in the world there. Grace, Sarah & Jonathan & Toby & Jacob, Eric, Michael & Hannah, Lindsay & Wally & Joe & Gus & Annie (with whom I got some good snuggle time), Tami & Peter & Clara & Kate, Deepak & Shareen, Grace's sister Gigi & her son Zac & her friend Inge, Peter Molnar, Leo & Vandy & Truman. We had a dance break around 8:30 pm. Peter told the clown joke. The party was the most fun I've had in a long time - thanks Jonathan & Sarah for hosting.

Around 11:00 pm people started heading home. Michael & Hannah were going out to a club and Eric & I decided to join them. We drove down to the South of Market area and went to this club called Temple. We got in without waiting in the long line or paying the $40 (!) entrance fee because Hannah has known the DJ Jay since their childhood in Connecticut. We danced until about 1:00 am. Everyone was in costume. Sarah loaned me her witch costume (long black dress, scary gray wig). Michael & Hannah dropped off Eric & me back at Sarah & JK's around 1:30 am. I had to shower and change due to sweating from dancing in costume. But I felt good and, surprisingly, I feel fine this morning.

Eric had to get up at 5:00 am to go to the airport to fly back to North Carolina. Grace left around 7:00 am to fly back to Seattle. I'm sorry they had to leave but grateful for our time together. It's a beautiful sunny morning here.

Ethan

Saturday update

Yesterday Eric and I drove over the Golden Gate Bridge and went for a walk in the Marin Headlands, with views of the city, coast, and ocean. We returned to the city and met Larry (who was in a full bunny suit) for lunch at a Singaporean restaurant in the Inner Sunset. Back to Sarah and JK's, where I rested and finished the book "Sick Girl." Grace and her younger brother Greg arrived - Grace had just flown in from Seattle and Greg, who lives in the East Bay, had picked her up at the airport. Greg's new girlfriend Katie, who is very nice, also arrived via BART from the East Bay. Eric, Grace, Greg, Katie, and I went out for dinner at Mi Lindo Peru, a Peruvian restaurant on Mission St that I like (thanks Greg for dinner!). Afterward we stopped at Mitchell's for ice cream - yum! Back to Sarah and JK's, where some of us, including me, watched the movie "Master and Commander." A very nice day.

Ethan

Friday update

Yesterday I went downtown and had lunch at a hole-in-the-wall Vietnamese place that I like, Tu Lan. In the afternoon I took BART over to North Berkeley, where Tami picked me up with her two adorable daughters Clara and Kate. Over to Tami and Peter's beautiful house, with views of the bay, where we had Indian food for dinner (thanks Tami and Peter for dinner!) and watched the Giants win Game 2. Tami and Peter are such nice people; it felt very comfortable and relaxing to be there.

Ethan

Giants!

Yesterday I took BART downtown, walked to Chronicle Books, and had lunch with Sarah and Lindsay (thanks Sarah for lunch!). Afterward Lindsay and I walked around AT&T Park (the Giants stadium) to soak up the atmosphere before the first World Series game later that day (which Lindsay attended - Chronicle Books got two tickets and her coworkers voted to give them to the biggest Giants fans in the office, Lindsay being one!).

Back to Sarah & Jonathan's to rest and finish "World War Z." Folks gathered there to watch the Giants game: myself, Sarah & JK, Eric, Tami, and Wally and his three cute kids. The Giants won and it was great to be able to watch it with SF friends. Afterward Eric, Sarah, and I walked along Mission St, where people were celebrating the win, to the Latin America Club (near my former condo), where Lindsay joined us for a post-game drink. We walked home - it was still pretty warm out. I was tired but happy.

Ethan

SF update

Yesterday morning I drove (thanks to Jonathan and Sarah for lending me their car) over to Deepak and Shareen's house in Cow Hollow just off Union St. They completely renovated their house a couple years ago and it looks amazing. They took me over to Fort Mason and we walked through the lovely community garden, which I had never seen before, and to a lookout point with great views of the north side of the city, the bay, Alcatraz, Angel Island, etc. It was another beautiful warm sunny day and the bay was a beautiful blue color. Then we went over to the Presidio and had a nice lunch at the Presidio Social Club (thanks Deepak and Shareen for lunch!). Afterward we took a walk through the Presidio to an overlook with views of the Golden Gate, Marin headlands, etc. You couldn't ask for a nicer day.

After stopping back at JK & Sarah's house to rest and read, I met Eric at the Connecticut Yankee, a New England-themed sports bar/restaurant in Potrero Hill, where Eric and I used to go to watch the Red Sox, Celtics, Patriots, etc., to watch the opening game of the new NBA season between the Celtics (now with Shaq) and the Heat (now with LeBron). The Celtics won, although they didn't look great and the Heat looked awful, besides LeBron. We were joined by Michael and Jon Burke, down from the North Bay, Wally, over from their new house in the Sunset, and O'Neal and his wife Sarah, who live in Potrero. It felt good to be there together.

Ethan

San Francisco!

I flew from Bellingham to Oakland this morning. Michael picked me up at the airport and we drove over the Bay Bridge to SF. We parked downtown, walked to the ferry building, and met Jonathan at the Slanted Door for a delicious upscale Vietnamese lunch with views of the bay. It was a beautiful warm sunny day. Then Michael dropped me off at Jonathan and Sarah's house in the Mission, where I am staying. I walked over to Bernal Heights, past the house on Coso where I, Eric, Sarah, Peter, Leo, and many others lived at one time or another, and up to the top of Bernal Hill, from where I had great views over the city and all around the bay. Walked back to Sarah and Jonathan's, where I rested and read "World War Z," which they had on their bookshelf and Eric had previously recommended. When Jonathan came home from work, I convinced him to get a burrito with me for dinner. Pork al pastor - yum! Toby and Jacob got back from kung fu class and we had an interesting conversation about submarines, Somali pirates, and Dungeons & Dragons.

I'm feeling good and it feels great to be here. Thanks to Michael for picking me up and for lunch and to Jonathan and Sarah for hosting me! I am truly blessed to have such wonderful friends.

Ethan

Update

Grace and I met with my oncologist Dr. Nestor yesterday afternoon. We decided that I will go on a "maintenance schedule" of just Avastin every three weeks for now. Dr. Nestor thinks that we have achieved "treatment to the best response" - that is, given the good response that I've had to the chemotherapy, more chemotherapy seems likely to have little additional benefit, and not enough benefit to outweigh the cost of making me feel bad (the fatigue would be expected to get worse and worse, and it had already reached the point of unacceptability to me). However, Dr. Nestor did not recommend taking a break from treatment entirely, so I will drop the "FOLFIRI" drug combo but keep the Avastin, which has less side effects. We will continue to monitor my condition via the CEA blood marker, occasional PET scans, and how I am feeling. When the cancer starts spreading again (apparently it's a matter of "when" not "if," barring a miracle - keep those prayers coming!), I will have to decide whether I want to resume the full chemo or not. The "time to progression" (when the cancer starts spreading) is unpredictable.

Dr. Nestor estimates that people typically regain 60-80% of their energy 6-8 weeks after stopping chemo. That matches my experience, in that it's been 5 weeks since my last full chemo, and I am still nowhere near my normal energy level. I am able to do some stuff, but I still spend a fair bit of time just sitting around and resting. Fortunately watching baseball suits my current energy level. I used to find baseball games too slow to sit and watch all the way through, but now their pace and rhythm suit me fine.

Ethan

A milestone

Today I played full court basketball for the first time since I got sick. I played two games (went 1-1). Boy, am I not in basketball shape. At first I was jogging up and down the court but by the end I was walking. Still, I was out there and even made a few plays.

Thanks to everyone who participated in the blood drive at WWU this week. Apparently they had a record number of donors (http://onlinefast.org/wwutoday/news/puget-sound-blood-center-concludes-best-ever-blood-drive-wwu). I know Grace and Kristi waited two hours to donate blood on Wednesday. Fortunately I haven't needed a transfusion in a while, but I am still grateful for you donors.

Our friends Kate and Lew, San Francisco natives and Giants fans, came over for dinner last night and to watch the Giants fail to clinch a spot in the World Series. I really hope the Giants win one this weekend, because then they would be in the World Series when I am in San Francisco next week (knock on wood)!

Ethan

A few good days

Sunday my mom and I drove up Route 20 into North Cascades National Park and looked at the mountains and lakes. The air smelled clean and sweet up there. Yesterday I went to the university and played basketball (3 games of half court, went 3-0) and stopped by my office. In the late afternoon my mom and I took a walk on Semiahoo Spit in Birch Bay, with views over the water to Mt Baker and the Canadian Coastal Range.

Today my mom and I drove up Mt Baker Highway to the end at Artist Point and did a couple of short hikes (Artist Ridge and Bagley Lakes). Beautiful fall colors. It was so warm I was hiking in a t-shirt. I'm glad we went today because it's supposed to start raining soon. I'm still tired but much better than last week. Pics: http://remmel.shutterfly.com/1900

Ethan

WWU men's golf

Congratulations to the WWU men's golf team, who won a tournament in California last week. They won three of the four tournaments on their fall schedule. Congratulations in particular to Patrick Boag, who shot a 220 (ninth best at the tournament). I am following the WWU men's golf team this season because of Patrick, who was a student in one of my courses last winter quarter. Coincidentally, he was also in one of Grace's courses that same quarter. He figured out that we were a couple when Grace brought Miles to my class one day.

When he heard about my illness, Patrick wrote me a beautiful message, which I really appreciated. So go Vikings! Good luck in your spring schedule and the Division II national championships!

Ethan

Feeling better today

This morning Grace, Miles, my mom, and I went to the monthly Swedish pancake breakfast at the Norway Hall. Saw Fred and Barb Grote there. My mom had not been before but enjoyed the kitschy scene. Then we went to the fall pumpkin festival at Stoney Ridge Farm. Farm animals, hay wagon ride, corn maze, pumpkin patch, kiddie train ride, etc. Saw Michael Barr and family there.

It is sunny but cool and crisp - a nice fall day.

I have stayed upright almost all day so far, a vast improvement, with some chemical help. I have found that taking a little oxycodone gives me energy, I assume because it counteracts the opiate withdrawal (oxycodone is also an opiate). Of course, I am leery of just replacing my dependence on Fentanyl with dependence on oxycodone. But it is an interesting dilemma - is it worth it to try to get off the opiates, if I feel better when I'm on them?

I am looking forward to the Giants-Phillies Game 1 later today. What a great pitching matchup: Tim Lincecum vs. Roy Halladay. My order of preference for who wins the World Series: 1. Giants (I lived 10 years in San Francisco and adopted the Giants as my National League team), 2. Phillies (for the sake of my friend George, a Phillies fan), 3. Rangers, 4. Yankees (of course, as a native Red Sox fan).

Speaking of the Giants, my dear friend Lindsay (a big Giants fan) visited on Thursday and Friday. She and her husband Wally and their three kids live in San Francisco, but Lindsay was in Seattle on business and drove up to Bellingham. It was great to see her; she is a lovely person. She brought Giants headgear for the whole family. Miles's panda hat is particularly cute (the Giants third baseman Pablo Sandoval is known as Kung Fu Panda, or Panda for short, due to his rotund physique and fierce hitting).

OK, gotta go. Just wanted to let everyone know that I am feeling better today.

Ethan

Three new posts from Ethan below

A few things I've been writing over the past few days, when I've had the energy.

Some thoughts on death and dying

I am not afraid of death. That is, I do not fear being dead. I suspect that being dead is not like anything (to use the philosopher Thomas Nagel’s terminology, from his famous essay on consciousness and the mind-body problem, “What is it like to be a bat?”). That is, I suspect that when my physical body dies my consciousness will simply cease. I would be overjoyed to be wrong – to discover that there is a world beyond this one, like “The Matrix” (but preferably with less evil robots and better acting). To stumble out of Plato’s cave, rubbing my eyes, to see that this life was but a shadow of reality cast upon the cave wall.

I would love to find that my consciousness could still interact with those of others. It is comforting to think that we might be reunited with our loved ones. I have told Grace that if there is an afterlife, I will be looking for her. I wouldn’t mind if any of her other boyfriends after me were there too, as long as I could be with her again.

I do not believe in heaven or hell, especially hell, but if there were a divine judgment on my life, I would not be afraid to face it. I believe that I have mostly lived up to my own moral standards and those of my community. I may be guilty of sins of omission – I could have done more to fight injustices around the world, more than just my relatively small donations to organizations consistent with my values, such as Amnesty International, ACLU, and NRDC – but I think I have committed few sins of commission – acts of injustice against others. I have no deep dark secrets. I have tried to be conscious of the consequences of my choices.

Sins of omission reminds me of one of the themes of the novel Cloud Atlas by David Mitchell, which Eric recommended to me. If you live in a society where the privileges of some people are made possible by the exploitation of others, and you partake of those privileges without fighting for the rights of those less fortunate, that is a moral choice, or rather an immoral one. As a privileged person in our unequal society, I feel guilty of this charge, as are many of us, to greater or lesser degrees.

I am not afraid of death. In fact, the way I have felt lately, death would be a welcome release from this prison of a body. From this life that is no longer worth living. From this constant struggle for survival. An escape from this lumbering robot that no longer obeys my commands. (“Lumbering robots” is how the biologist Richard Dawkins describes human beings, as complicated structures that have evolved simply to support the replication of our genes – the only parts of us that survive our death, via our descendants. Dawkins does note, however, that we can also create “memes” – cultural products and practices, such as the game of poker, the practice of cooking meat, or the belief in God – that survive our death, via their propagation in other people’s minds and behavior.) This lumbering robot is easy to wound but hard to kill. There is no on/off switch. If there were, I would have been tempted to switch it off by now.

I am not afraid of death, but I am not so keen on dying. I am not looking forward to the process of getting from here (life) to there (death). I hope to make this transition as gracefully as possible, but it seems difficult to do well. It feels like trying to cross a rushing river by stepping on small slippery stones.

But when does living end and dying begin? Can they be clearly separated? I don’t think so. All living is dying, in that all life ends in death. But there is a shift in mental attitude from being healthy and death being a distant abstraction to being sick and death being a nearby reality. The challenge, of course, is to continue living with the knowledge that you are dying. To appreciate the present. It is tempting to feel that life is pointless when death is nearby. To lose hope for happiness.

Objectively, I know how I should approach my situation, but subjectively, it is hard to put into practice. I find that my mental/emotional state is closely coupled to my physical state. When I feel good physically, it’s not hard to be happy. But when I feel bad physically, it’s very hard to be happy. It’s hard to appreciate the present when you feel like crap. What is less clear to me is which side (physical vs. mental/emotional) drives the other – which is the cart and which is the horse. Do I feel good or bad physically because I feel good or bad mentally/emotionally, or vice versa? I wish that I could just decide to feel better physically, but I think it’s actually a more complicated interaction.

Sometimes I feel like Ethan has already died. That is, the real me, the Ethan you know and love, died when I got sick, and has been replaced by a fake me – not Ethan 2.0, a new and improved version, but Ethan 0.5, a slower and stupider version. I feel like I am being corroded from the inside out by an implacable parasite. This parasite is consuming me physically and also mentally. It is chomping like a caterpillar through my memory banks. I feel like I have aged 40 years in a few months. I have “senior moments” where I can’t remember something that I know that I knew. Encountering these blank spaces in my memory feels as if you were walking through your house and entered a room, but instead of being furnished, the room was empty with bare white walls. My mind feels like Swiss cheese.

Ethan

Ode to my caregivers

I would like to give thanks and praise to my primary caregivers, my mom and Grace.

My mom is with me more than anyone else these days. And let me tell you, I am not much fun to be with these days. I don’t go anywhere or do anything. I don’t contribute much to conversations. I’m not much help around the house. I just try to eat three meals a day, get a few minutes of exercise each day, and then go back to bed.

My mom is separated from her home, her husband, and her friends. She sleeps in our cold basement apartment, which has a tiny bathroom and spiders that bite her at night. She doesn’t get to see my sister’s family as often as she normally would.

And yet she has a big beautiful smile every morning when she greets me, and every evening when she says good night. She buys our groceries and cooks our dinners. She drives me to doctor appointments and sits with me during chemotherapy. She rubs my feet. She reads aloud to me when I am too tired to read to myself. She shares her Buddhist philosophy and personal wisdom. She has only lost her temper with me a couple of times, far fewer than I probably deserve.

Grace is also a strong woman. She holds down a full-time job, takes care of a 3-year-old almost singlehandedly (with basically no help from me and a little from my mom), and helps take care of me. It must be hard, and yet she maintains her cheerfulness and positive attitude.  I don’t know how she does it, but I’m glad she does. She is a beautiful spirit in a gorgeous body. She deserves better than this.

Ethan

Update from Ethan

I have been laid low lately by a mix of chemo-induced fatigue, depression, opiate withdrawal, and possibly a cold. I don’t know the proportions in the mix, but the result is that I have no energy to do anything. For the past 10 days straight I have spent 80-90% of the day horizontal, mostly lying motionless with my eyes closed, not sleeping but too tired to read or talk.

To address the chemo fatigue, I chose to drop two of the three main drugs for my most recent infusion this past Wednesday and only receive the one (Avastin) that is thought to have the least side effects. In hopes of recovering in time for my planned trip to San Francisco at the end of October, I refuse to put any other poisons in my body right now. The tradeoff is that it might reduce my already limited life expectancy, but I would rather feel better, if possible, for a shorter period of time than feel this bad for a longer period of time. In other words, I’m willing to trade quantity of life for quality of life.

To address the depression, I have started taking an antidepressant and seeing a counselor (although I had to cancel my meeting with the counselor today because I was too tired to go). I was reluctant to go on the antidepressant, because I am so sick of taking pills. I found this blog post relevant to the issue: http://well.blogs.nytimes.com/2010/06/21/bidding-farewell-to-ghosts-of-pain/

Opiate withdrawal: since June I have been wearing a Fentanyl patch. Fentanyl is a powerful narcotic pain reliever (100 times stronger per amount than morphine). I don’t need it anymore for pain relief, but the one time I tried to go off it before I felt so bad that I put it back on. One of my doctors (Dr. Whiting) suggested that it might be depressing my energy level and that I should try to get off it because I would feel better in the long run. Well, I hope he’s right because in the short run I feel terrible (and my run isn’t expected to be that long anyway). Reminds me of the heroin withdrawal scene from the movie Trainspotting (although I haven’t had any hallucinations – thank goodness because that baby creeps me out): http://www.youtube.com/watch?v=GgeDh1WCyeM

Cold: I have had a stuffy runny nose lately, but I can’t tell if I have a cold. That’s what’s so frustrating about my situation – there are so many variables and medications that I can’t tell what’s affecting what or what I should do to feel better.

On a typical morning recently, I wake up between 7 and 8. I usually sleep in our former guest bedroom, and Grace and Miles sleep in the master bedroom. Within seconds of waking, I remember that I have cancer and am likely to die in the not-too-distant future. This awareness of cancer and death curdles the new day like lemon juice in milk. I am so sick of the C-word (cancer) and the D-word (death). Every little ache and pain brings a cold rush of fear – is that the cancer acting up?

I hear Grace and Miles get up. I feel that I should get up and say hello to them, but I have no energy. I feel guilty for not getting up. I curl up in the blankets like a warm cocoon against the chill outside (the nights are getting colder here – it’s 40 degrees right now at 11:23 PM). I promise myself I will get up by 9:00 AM. I close my eyes but I can’t go back to sleep. I hear Grace and Miles leave the house. I open my eyes periodically to check the time. As 9:00 AM approaches, I dread trying to get up. When 9:00 AM arrives, I command my body to get up. No response. I silently scream “Get up!” and slowly stagger to my feet, my body screaming back – “No! You can’t do it! Lie down! Rest!” I stumble to the kitchen and prepare and eat the quickest warm breakfast I can think of: hot chocolate and half a toasted bagel. Then the moment of truth: to stay upright or return to bed. Those of you who know me well know that I do not lack willpower. I may be quiet, but I’m stubborn. But the fatigue is stronger than my will, and I return to bed. I promise myself that I will get up by 12:00 PM for lunch. And so the day goes…

I am so tired.

Tired of being tired.

Ethan