NCCA tournament

My order of preference among the four teams remaining in the men's NCAA basketball tournament:

1. Butler University

Eric says that Butler coach Brad Stevens reminds him of me. He also says that about Obama. I would like to be a combination of Brad Stevens and Obama. I would give the best pre-game speeches ever.

2. Virginia Commonwealth University (VCU)

Brad Stevens was the hot young coach last year after Butler's Cinderella run to the championship game, where they lost to Duke when a half-court shot at the buzzer clanged off the rim. This year's hot young coach is VCU's Shaka Smart. Last year Brad Stevens chose to stay at Butler. Eric thinks Shaka Smart is more likely to bolt to a major-conference school.

3. University of Connecticut

UConn coach Jim Calhoun is the cranky old man among these four coaches. But I still wouldn't want to play cards against him.

4. University of Kentucky

Coach John Calipari is a sleazeball, albeit a rich and successful one. He took his two previous college teams, UMass and Memphis, to the Final Four, but both schools had to forfeit their wins for NCAA violations involving payments and perks to players and their families. In both cases, however, Calipari had already moved on to a more lucrative position (he has an 8 year, $31.65 million contract with Kentucky). Calipari is happy to recruit players who have no intention of graduating and just want a platform to showcase their talents for the NBA. And he's been successful at having players drafted by the NBA - in the last NBA draft five players from Kentucky were selected in the first round (a record for one school), including #1 overall pick John Wall. Note, however, that despite five NBA first-round picks, that team did not win the national championship, losing in the regional finals to West Virginia.

Unfortunately, my order of preference is probably the reverse of their likelihood of prevailing. But in a single-elimination format, you never know. That's one reason I love the NCAA tournament!

On the women's side, Stanford has reached the Final Four for the fourth straight year (but no championships during that stretch). If they beat Texas A&M on Sunday, they will likely face UConn in the championship game for the second straight year. UConn has won the last two championships, going undefeated both seasons. During this regular season, however, Stanford snapped UConn's NCAA-record winning streak at 90 games (UConn's only loss of the season).

Go Cardinal!

Ethan

Change of plans

Got a call from UW Nuclear Medicine this morning. The hospital here in Bellingham needs to analyze the results of my bone scan from yesterday - a radiologist reads the scan and writes a report - and then they will Fedex the images on CD and the report down to UW. The UW Nuclear Medicine doctors need to look at those before they can order the samarium, which apparently takes 48 hours to get. The upshot of all this is that I can't do the samarium treatment this Thursday afternoon as scheduled, or even Friday. So we rescheduled for Tuesday 4/5, before my appointment with Dr. Whiting in Seattle.

Grace's parents stopped by yesterday evening on their way back from visiting Vancouver. We went out to dinner at A.W. Asian Bistro in Fairhaven, which is where Grace and I had our first date. :-)

My mom left very early this morning. Eric arrives this evening.

Ethan

Yay!

I had the first meeting of my spring quarter course this morning and I feel good about how it went. I was a little nervous, having been out of the classroom since last spring, but once we got started I forgot about everything else. And that's been the real blessing of teaching so far, including the prep work - it takes my mind off my own problems and worries and exercises my mind on something else.

I feel better physically too, although I still have bone pain. I walk slowly and with a slight limp. Certain motions, such as getting out of a car or putting on socks, can bring gasps of pain. But I also have periods of time when I don't think about it at all, which is good.

This afternoon I had a bone scan and blood test at the hospital. Grace accompanied me - thanks Grace! This was in preparation for my samarium radiopharmaceutical treatment in Seattle, which Grace got moved up to this Thursday afternoon. My best friend Eric arrives here tomorrow evening and will accompany me to that appointment.

My mom leaves early tomorrow morning for Maine and Rochester. I hope that will be a chance for her to relax and recover from the stress she feels here. In a way what she is going through - watching her child die - is worse than what I am going through. I know that I would rather die than watch Seth or Miles die.

I recently saw some friends that I had not seen in a while and in talking to the husband of the couple I realized that he did not know my cancer news. I broke the news to him and he was surprised and sorry to hear it. But my own reaction was interesting to me. It seemed like old news to me and I was unable to associate much emotion with it. Earlier on, I considered my situation to be tragic but now it just seems like my new reality. The same thing with a nurse at the hospital today - she was expressing sympathy for me having terminal cancer at a relatively early age, with young kids, etc. and I appreciated what she was saying but I didn't feel the grief or outrage that I might have felt before. I guess it's true what they say: you can get used to almost anything.

Good night,

Ethan

Comings and Goings

Grace's brothers Gene and Gary drove up today to visit, watch NCAA basketball, and have dinner (made by Grace). It was nice to see them.

Eventful couple weeks coming up. Tuesday is the first class of my spring quarter course. Wednesday my mom departs for about 12 days in Maine and Rochester and my friend Eric arrives from North Carolina. Friday my friend Jonathan and his son Toby arrive from San Francisco. Eric departs Sunday evening and Jonathan and Toby depart Monday morning. That week is Seth's school spring break, so Lynn and Seth are visiting her sister's family in Denver, departing Tuesday 4/5. They return on Monday 4/11, as does my mom.

Surprisingly, my bone pain is a little better today. I changed my Fentanyl patch this morning, so that might be why. But my hips and shoulders are still pretty sore, which makes certain movements difficult, such as sitting down, standing up, raising my arms, and twisting off child-proof caps on pill bottles (which I have to do all the time).

Ethan

Photos, pain

Wednesday evening we played on the deck and in the yard. Grandma and Seth organized their antiquities, which they have identified as being from a Roman site in Turkey, for Seth's "museum." Miles played among the daffodils.
Pics: http://remmel.shutterfly.com/2422

By the way, Seth got a haircut. Lynn graciously agreed to let me get it cut shorter than usual.

Unfortunately my bone pain has increased in the past couple of days, so I am using more painkillers, but I am still sore. :-(

Ethan

Psychology Today blog

I posted something to my Psychology Today blog a couple of days ago. Psychology Today featured my post again and it has received some really nice comments:
http://www.psychologytoday.com/blog/living-while-dying/201103/goodbye-chemo-hello-hospice

Ethan

Willows Inn

My mom treated Grace and me to a mini-vacation at the Willows Inn on Lummi Island and babysat Miles overnight - thanks Mom! Thursday afternoon Grace and I drove through the Lummi Indian Reservation to Gooseberry Point and took the Whatcom Chief car ferry across to Lummi Island (a 5-minute ride). Then we drove to the Willows Inn on the northwest side of the island, with a great view of some of the San Juan Islands and Channel Islands in Canada. Grace got a massage while I soaked in the hot tub, read, and relaxed. At 6 pm we entered the dining room for the one-seating-only prix-fixe dinner based on fresh local ingredients (http://www.willows-inn.com/menu.php). About 3 hours and 10 courses later we stumbled happily back to our room.

My mom and her friend Kaye had dinner at the Willows several weeks ago, after the restaurant and its 24-year-old wunder-chef Blaine Wetzel were written up in the New York Times: http://travel.nytimes.com/2011/01/09/travel/09restaurants.html
It was funny to see little Lummi Island featured among big culinary cities like San Francisco, London, Sydney, Singapore, and Barcelona.

The most surprising and satisfying course was dessert. It didn't sound good at all: "green apples with buttermilk and licorice." But it was light, refreshing, and delicious - perfect after all the other courses.

Friday morning Grace and I enjoyed breakfast in the dining room and then made our way back to Bellingham. Friday evening we (Grace, Miles, my mom, and I) went to a waffle party at Jim and Crispin's house - lots of friends and kids there.

Ethan

Wednesday update

I played basketball yesterday - four games of half court. I am out of shape from laying around so much but it felt good to play and I was actually happy with how I played. I even played a little defense, which I haven't done for a while. It was also good to see my basketball friends. I was matched up with my friend Ben. Lucky was also on the other team and shot really well, including a lot of three-pointers. Our team did better once we added our own three-point shooter, Gary McKinney, which spread the floor and gave me more room to post up inside. I liked our team: me, Gary (good outside shooter), Mike Henniger (good pick-setter and interior defender), and Ernie (my hero and master of the step-back bank shot and other crafty moves).

In the evening Grace and I went to the movie "The King's Speech" (my mom babysat Miles - thanks Mom!). The movie was very good. The acting was excellent, led by Colin Firth. The "Best Picture" and "Best Actor" Oscars seem deserved, in my opinion, although I didn't see all the competition. It was nice to go out and do something with Grace.

I gotta love a movie in which the hero is a speech therapist. Maybe they'll make a movie about my friend Kim Peters. Who would play her? Maybe Charlize Theron, with her hair colored brown. Kim's husband John Rybczyk (who my son Seth likes to call "Johnny Lipstick") would like that, being a Charlize fan. Speaking of Charlize, here's a funny video of her with one of my favorite comedians, Zach Galifianakis: http://www.youtube.com/watch?v=83I_rQUbw8c

I read some interesting things recently by the Gopniks. Alison wrote something in Slate about the value of exploration versus direct instruction in preschool children: http://www.slate.com/id/2288402/

Adam wrote something in The New Yorker (I am little behind on my New Yorkers) about how the Internet affects our cognition and culture. I don't love everything that Adam writes, but I thought this essay was very good: http://www.newyorker.com/arts/critics/atlarge/2011/02/14/110214crat_atlarge_gopnik

Alison's essay reminded me of Grace's ongoing uncertainty about where to send Miles for preschool and kindergarten over the next couple of years. He is currently at a child-care facility affiliated with an evangelical Christian church. They are convenient, affordable, flexible, and super-nice, but not very academically-oriented. Miles is also picking up some religious references, which is kind of funny but kind of weird for us. He was singing a song the other day that went: "I'm in the Lord's army - Amen!" Another day we were talking about making things and Grace said that she and I made Miles and Miles objected, saying "God made me!"

Adam's essay reminded me of what I was writing about a few days ago: whether the social networks in our culture are fraying. I joked that Facebook doesn't count, but maybe it does. Does the Internet help us stay connected in meaningful ways, or is it just voyeurism without real interaction? I guess I don't know about Facebook, being one of the last people in the world (or at least in my generation) to not be on Facebook at all. But email and blogs have helped me stay connected to friends, both near and far.

Ethan

Post #200!

This is my 200th post to this blog!

Last night the fatigue lifted a little and today was my best day, energy-wise, since the chemo. I am encouraged and hope that this trend continues. I ran errands this morning and went into the office for a few hours this afternoon.

I talked about the Megantic fly fishing club in a previous post. I found a picture in one of my folders of some of the Megantic property. The club owns a set of ponds and small lakes in northwestern Maine, near the Canadian border. It is a beautiful area, as you can see. I think that's Big Island Pond in the center and Ell Pond on the left (so named for its L shape). You can't see them in this picture, but the cabins and dining hall are on the left end of Big Island Pond. All the ponds have Rangeley Lake rowboats, which are signed out on a big chalkboard in the dining hall.

Origami

Seth is really into origami lately. Last night he took a piece of packaging paper and folded it into a dragon. He made up this design himself, using only folds, no cuts or tears. I think it's pretty cool!

The dragon's head is on the right here:

The dragon's tail is on the bottom here:

The artist with his creation:

While I still have my soapbox...

The other day Grace was trying to explain the concept of "wife" to Miles. Miles said "I want a wife!" Grace said that maybe he would have a wife when he was older. Miles announced "The robot is my wife!" (The robot is one of his toy figures.)

If I had not gotten sick, I would have liked to marry Grace (assuming she was willing to marry me!). We consider ourselves to be in a marriage-like relationship, and even refer to each other as "husband" and "wife" sometimes, but it would be nice to do so without any hesitation or qualification (e.g., "well, not legally..."). I love calling Grace my wife or hearing her call me her husband - it makes me feel proud to be with her. We often say "partner," but that just doesn't have the same ring (pun intended).

I hate to agree with social conservatives on anything, but I think the institution of marriage is in decline in our culture, and that something of value is being lost as a result. Unlike many social conservatives, however, I don't think that gays and lesbians blurring the definition of marriage is the cause of the decline. I fail to see how a group of people fighting for the right to legally marry devalues the institution - on the contrary, it suggests that marriage is valuable enough to fight for. I think the cause of the decline is the fact that younger generations increasingly view marriage as optional. Marriage is viewed as a personal choice, but not necessary for cohabitation or childrearing.

I realize this may seem hypocritical since Grace and I have contributed to this trend. I don't think there is anything inherently immoral about unmarried cohabitation or childrearing. In fact, I'm not sure whether this trend is a bad thing overall. But I think it is symptomatic of the general loosening of the social ties that bind us together (the "Bowling Alone" idea, although I didn't actually read that book). In our culture, I think people increasingly view themselves as independent autonomous individuals (my friend Lauren, a cultural psychologist, could speak to this more cogently). Although, like I said, I'm not sure whether this is a bad thing overall, I think something of value is lost when we do not feel embedded in social networks (and, no, Facebook does not count).

On a different but related note, I recently read about Jonathan Haidt's research on the preponderance of liberals in academia. Haidt apparently suggests that conservatives are made to feel uncomfortable and unwelcome in academia and thus they leave. That may be part of it, but I think another part is that conservatives tend to value making money more than liberals, and academia doesn't pay well (especially for the amount of educational investment required), so conservatives are more likely to pursue other fields such as business. Apropos, I read someone describe the political policy battle between liberals and conservatives as a fight between PhDs and MBAs.

So who should play me in a movie? How about Ed Norton (Yale '91 like me, although I didn't know him). Trivia note: according to IMDB, Norton was friends at Yale with Paul Giamatti and Ron Livingstone, the stars of two of my favorite movies: "Sideways" and "Office Space," respectively.

Ethan

Random Ramblings

Sleeping most of the day is not conducive to keeping up with email, so I have an inbox full of unread messages. I am working through them when I have energy, but anything urgent should probably go through Grace.

Two nights ago it rained. The sound of the rain on the roof reminded me of the cabins at the Megantic Club, the fly fishing club in Maine to which my dad belongs. When I was a preadolescent, an older fellow, Dick Hayden, invited my dad and me to come with him to the Megantic Club. Our trips there became an annual tradition. Eventually Dick Hayden passed away (add him to my afterlife list of people I'd like to see again - he was a very nice man), my dad joined the club, and he and I continued to go until I moved away and our Megantic visits became sporadic. I haven't been to the Megantic in many years but I remember it fondly. Last summer my dad and I were going to bring Seth to the Megantic, but then I got sick and all our plans had to be cancelled. I regret not being able to introduce Seth to a place that was very special to my dad and me when I was growing up. I hope my dad will take Seth and Miles someday.

Yesterday morning when I opened my bedroom blinds there were two fat deer in our front walkway. I'm afraid they were munching on the lovely flowers that my mom has planted there. Deer have reappeared on South Hill lately, from wherever they hang out during the winter (Sehome Hill Arboretum? Chuckanut Highlands?).

Our daffodils are blooming. I may have to mow the grass soon.

I have a couple of little talismans that give me comfort. In the pocket of my jacket I keep two shells that I picked up on the beach at Point Whitehorn. When I'm out walking I like to rub them between my fingers. On my right wrist I wear a SillyBand (a rubber band that forms a shape - they were a craze among schoolkids last fall) given to me by Seth. It used to be a Barkleyesque basketball player, but that one broke, so Seth gave me a brown bear, which I like because it reminds me of Grace (a Cal Bear alum - maybe I should also get a green tree for Stanford).

Speaking of Stanford, I am proud of having gone there. I had a very good experience there, in large part due to my Ph.D. advisor John Flavell, a distinguished scientist but also a sweet and modest man.

Grace and I met with my oncologist Dr. Nestor on Friday morning. When I told him that I didn't want to do any more chemo and I wanted to officially enter hospice care (which just means that my medical care shifts from balancing quantity and quality of life to focusing on quality of life), he didn't argue, but I did sort of get the sense that he wanted to wash his hands of me. It reminded me of how some of my Stanford professors (but not John Flavell) seemed to write me off when I decided to take a position at WWU rather than pursuing one at a more prestigious research-oriented university. In both cases, it seemed like the other people (Nestor and the Stanford professors) wanted to disassociate themselves from me if I was not going to be a success story, as defined by them. In the Stanford case, I had to swallow my pride and competitiveness and reassure myself that I would be happier at a university that valued and rewarded teaching as well as research (plus the people in the psychology department at WWU seemed nice as well as smart and Bellingham seemed like a nice place to live and raise kids - all of which turned out to be true). Similarly, in my current situation, I need to remember that it's my life and I need to do what I think is best for me - I can't just try to fulfill other people's hopes and expectations.

Have you ever played that game of who would play you or someone you know in a movie? I think Bradley Cooper would be a good choice to play my friend Eric (except that Eric is handsomer :-).

Ethan

Saturday update

I don't feel worthy of all the super-kind and eloquent comments and messages that I have received, but thanks! It reminds me of something my dad said before he left. I don't remember his exact words, but the gist was: if love could heal you, you would be healed. I feel lucky to know so many good people. I just wish I had more time and energy - there are so many people with whom I would like to spend more time.

The past few days have not been great - lazy, low-energy days. I'm not in any great discomfort, just really tired all the time. I sleep most of the day, then most of the night, but I never really feel rested. I'm trying to take my therapist's advice and not stress about it too much. But I'm not sure whether it's better to relax and wait for energy to come or to try to make energy by forcing myself to be active even when I don't feel like it.

So here is what I hope happens next. The chemo fatigue lifts. That often takes 3-4 weeks, and I'm still in my second week after chemo (it seems like longer). The bone pain stays under control. The radiopharmaceutical treatment (the Samarium-153 or "Quadramet" that Grace mentioned) that we are investigating could help with the bone pain. I am able to teach my course that starts March 29. I am able to do the associate chair duties for the psychology department during the spring quarter. (I was going to serve as the associate chair during this past academic year, and I was really looking forward to working with our chair and my friend Larry Symons.) I am able to help Grace, Lynn, and my mom with taking care of Miles and Seth. We'll see. It's possible.

Kristi and Mark had Grace, Miles, and me (my mom went to yoga) over last night for dinner and to watch the Washington-Georgia basketball game, which Washington won in a close, hard-fought game. Yay! Go Huskies! Thanks Kristi and Mark! Washington plays basketball powerhouse North Carolina (my friend Lindsay's alma mater) tomorrow in what should be an entertaining game if the Huskies can keep it close.

This morning was Swedish pancake breakfast at the Sons of Norway Hall. At our table were Grace, Miles, Lynn, Seth, my mom, me, and our neighbors and friends Gene and Jane. At another table were our friends John and Julie, their baby Xavier, son Callum, and some of John's family, as well as our friend Troy. Afterward Gene, Jane, my mom, and Seth went to an estate sale, where my mom and Seth bought some fossils and ancient Roman artifacts, which they are currently researching on the Internet and cataloguing.

Ethan

Great pic

My childhood friend Jon Lauck sent me this picture of myself, himself, his sister Molly, and my sister Rachel. The Laucks are perhaps our earliest family friends. This picture was taken at one of the natural water slides that we used to go to. I like seeing the resemblance between myself then and Seth now, although I am a little older in this picture than Seth is now.

Thanks

I felt a little better today than yesterday. I hope that I will feel a little better tomorrow than today. I am trying to crawl out of the pit of despair. The amazing expressions of love and support that I have received have helped - thank you.

I heard today from the last clinical trial that I was considering and I am not eligible. So I am not looking at clinical trials anymore. I am OK with that - I wasn't sure I was willing to travel somewhere else for an experimental treatment, the treatment regimens are often quite grueling, and they usually don't help anyway.

I also don't want to do any more chemo. I know I've said that before, but this time I mean it! This last round was the last straw. I've been seeing a therapist who specializes in cancer and terminal illness. I saw her today and she made me feel better by telling me that, based on what she has learned, nobody really understands chemo fatigue unless they've experienced it. It's not like normal fatigue. It's not the same as depression. People, including myself, often think that one should be able to power through fatigue through willpower, positive thinking, etc. I know I sometimes feel like a whiny fraud because I can't explain why I feel so bad, even though I'm not in great physical pain. Her basic message was that I should give myself a break.

So my options are narrowing, but that's OK. I can focus now on trying to maximize my quality of life, managing my pain symptoms, and just trying to enjoy life as long as possible.

Ethan

Some sad stuff

I am ready to die. I don't mean to alarm or upset people, or to be melodramatic. I just want people to know that, if I die, I am at peace with that. I wouldn't want people to mourn for me. I mean, feel free to mourn for yourselves if you miss me, but there's no need to feel sorry for me. I've had a good life, thanks to my family and friends, and I'm ready to move on. I feel that my job now is to get from here to the end in as dignified and graceful a way as possible.

I think it makes more sense to feel sorry for the people who are left behind than for the person who dies. After I die, I won't have to worry about anything anymore. I've tried to get my affairs in order as much as I can, but my loved ones will have to clean up my mess and carry on. That seems harder than my part.

Obviously my first choice would be to recover and be healthy. Unfortunately that doesn't seem to be an option for me. So my options are to (a) live in a constant state of sickness and suffering, sometimes feeling better, sometimes worse, but never great; or (b) die. I've done the former for almost a year now and I'm ready to try the latter (although I understand there are no refunds).

It's been almost one year since this ordeal started (I first felt the abdominal pain), and the anniversary feels significant. It feels like the finish line of a long race. I can't imagine doing another lap around this track, especially knowing that the next year would likely be harder than this past one.

But dying is easier said than done. I have a "DNR" (Do Not Resuscitate) order on my desk, but that's a passive measure. I've considered suicide, but Grace has asked me not to do something without consulting her, and I will respect her request.

I wonder if getting the chemo last week was a mistake. It worked in that it greatly reduced the bone pain, but since the fatigue hit last Friday I have been in the pit of despair. As I've said before, as awful as the pain is, the fatigue is worse, because I can't think clearly or do anything and then I feel useless - like I'm wasting time, using up resources and people's time, energy, and goodwill, and not contributing anything useful to anybody. I know Grace and my mom are willing to continue to support me, but this is obviously very hard on them. I would like to let them move on too.

When the bone pain was getting out of control before the last chemo, I actually felt happy in a weird way because I felt that maybe we were breaking out of the cycle we've been in and reaching a resolution to this situation. When the bone pain receded after the chemo, I sort of felt like I'd missed an opportunity to get off this roller-coaster. If you saw The Lord of the Rings: The Return of the King, there is that overly long farewell scene at the end where Bilbo and Frodo are going to board the Elven ships and sail away from Middle Earth. I felt like Frodo, if he had turned around and realized that the ships had sailed without him.

I've been suffering from anhedonia - inability to take pleasure in things I usually enjoy. Sad things make me sad. Happy things also make me sad, because they make me think about things I would like to do but can't. Even the things that give me pleasure when all else fails - my kids - sometimes make me sad lately, because I feel too sick and tired to play with them, and that really hurts.

I can think of only two moments of real happiness lately. One was last Saturday, sitting on the red love seat in the TV room with Seth and my dad (before my dad left to go back to Maine), watching the Pac-10 championship game, when Washington forced overtime with Arizona and then their star guard Isaiah Thomas (no relation to the former Detroit Pistons star) hit the buzzer-beating jump shot to win the game. The other was tonight, when I heard Miles get up from bed and I went into his bedroom and lay down with him until he fell back asleep.

I've thought about the possibility of an afterlife recently. As I've written before, I'm too much of a scientific materialist to really believe in disembodied souls, but who knows? It's a comforting thought, and I can see why people embrace it. If there is an afterlife, you know who I'm most looking forward to seeing again? My Grandpa Don Ryan and my dog Pilot.

I hope tomorrow will be a better day. You never know.

Ethan

A dream

Monday night I had a dream that felt significant. I bought a big beautiful house in the Mission District of San Francisco. The house was previously owned by the Red Hot Chili Peppers and it was great for entertaining - big open kitchen/dining area, big roof deck, etc. In the dream, I was single and childless. I invited over a bunch of friends - Eric & Meredith, Jonathan & Sarah, etc. Everyone loved the house and we had a good time, but then everyone had to go home. Last to leave was Eric. We biked together to the station where he was catching a train or bus. (In the dream I had a really nice mountain bike - where all this material wealth came from was unexplained.) As I turned to head home, I realized with a wave of sadness that I was returning to an empty house and that I would be alone.

At that moment I woke up from the dream. I still felt the sadness, but as I realized where I really was (bed, Bellingham, near Grace), the sadness was swept away by relief and happiness. So I guess I would rather be dying of cancer in Bellingham and with Grace than a playboy bachelor in San Francisco but without Grace. Pretty high praise for Grace from my subconscious!

On a related note, when Grace and my mom took me to the appointment with Dr. Whiting in Seattle on Monday (and they did take me, rather than go with me, as I was semi-comatose), I had a thought that I must have done something right sometime to earn the support of these two strong beautiful women - similar in some ways, different in others, thrown together through caring for me. Well, I guess a mother's love doesn't have to be earned, just not squandered. But Grace had a choice and chose me, for which I will be forever grateful. Although I also feel guilty, like she chose the lemon on the lot, although nobody could have foreseen my health problems. But she did get a beautiful child out of the deal - he is smart and funny and sweet and extra-cute with his new haircut.

Ethan

Samarium-153

(Grace here.)  Ethan, Kathy, and I met with Dr. Whiting @ SCCA yesterday afternoon (thank you, Dr. Whiting!  And thank you to his scheduler Sarah who was able to get us in a the last minute).  Dr. Whiting is an incredibly knowledgeable person...more importantly, he has made this ordeal much easier with his empathy and kindness.  Without going into too much detail -- I'll let Ethan share more later -- one of the most important things that we got out of yesterday was learning about Samarium-153, a form of radiation therapy that goes directly into the bloodstream.  It's primary purpose is to give "pain relief in patients with metastatic bone lesions who are having bone pain."  The actual drug is called Quadramet.  Ethan had external beam radiation therapy last summer, but that was to address very localized pain.  The bone pain is much more diffuse now, so EBR is not feasible.  However, we're waiting to hear back from Dr. Nestor, our local oncologist, if this therapy is even available in Bellingham (and if Group Health will cover it).  The UW's Department of Nuclear Medicine has it.  That sounds kind of cool, doesn't it? 

Thank you to friends -- far and near (Bunns!) -- for your continued support and good wishes. 

~Grace

Fatigue

Not checking or returning messages, sorry.

Viking sports update

In their first tournament of the spring season against Division II competition, the WWU men's golf team (ranked #2 in Division II) came from behind to beat Chico State (ranked #1 in Division II). Pretty cool!
http://wwuvikings.cstv.com/sports/m-golf/spec-rel/030811aag.html

The WWU women's basketball team plays Friday as the #4 seed in the Division II West Regional against #5 seed Alaska Anchorage. The regional will be hosted by top seed Cal Poly Pomona. The Vikings must want revenge after losing to Alaska Anchorage 68-67 in the championship game of their conference (GNAC) last Saturday at WWU. It was their first home loss of the season and dropped their national ranking to #14 in Division II.
http://wwuvikings.cstv.com/sports/w-baskbl/spec-rel/030711aab.html

Ethan

New chemo report

Good news so far! My bone pain has decreased incredibly, despite taking off 25 micrograms of Fentanyl, bringing me back down to 100. Yesterday I could hardly walk even with crutches, I couldn't put on or take off my socks without very painful contortions, and my pain was a 7 to a 9. Today I can get up and move around and the pain is barely noticeable, perhaps a 1. Obviously a huge and encouraging improvement.

Yesterday during and after chemo I was quite spacy and groggy. Grace told me today that she had to ask me things up to 12 times before I would respond. I would fall asleep in the middle of motions, like raising a glass to my lips - fortunately my mom always stopped me from spilling on myself. Sometimes I would come to with no idea of how long I had been out. I was daydreaming while I was half-sleeping, so I would often come to by blurting out something that must have made sense in my daydream, but not to me or the people around me. I also had a surprisingly hard time separating my daydreams from reality. Today I feel less spacey and groggy, and able to have a conversation, but I wouldn't trust myself to drive yet.

The side effects have been exactly as I was led to expect. Less GI upset and "sick to my stomach" feeling, but peripheral neuropathy instead. This morning I washed my hands in cold water and my fingers felt weird and prickly, and it took me a minute to remember about the neuropathy. Later I got something out of the fridge and felt it again - like lots of bee strings, but not that bad. Actually, it's not that painful and fades quickly, although I've read that it gets worse over time. But it still surprises me and it's hard to remember to avoid the things that aggravate it, like cold things, such as (gulp) ice cream. That's a kick in the Nooksack, or rather, the Tillamook (local jokes).

I haven't felt any unusual fatigue yet, but that doesn't usually arrive until after we disconnect the 5FU pump, which we will do tomorrow at noon. I didn't sleep at all last night. Despite all my grogginess during the day, maybe I got enough rest in little naps, or maybe it was the buzz of all the drugs, but when it was time to go to bed I just stayed at my desk, working on emails and blogs and other little errands, and before I knew it the sun was up. I do plan to sleep tonight, whether I feel like it or not.

Ethan

Want automatic updates from this blog?

I mentioned in my post on Feb 17 that I could enter up to 10 email addresses to receive automatic updates from this blog. Only my mom, Meredith, and Jonathan have signed up so far, so I still have seven spots if anybody wants one. I'm making this as a separate announcement this time so people are more likely to see it.

Ethan

Chemo-day Update

Hi Everyone,

Guest Blogger Grace here.  It's mid-day Tuesday March 8th, and Ethan is at the Infusion Clinic now.  I've just left there, and Kathy and Chuck are still with him.  Today is his first round of the FOLFOX regimen, and the FOL (Folinic Acic/Leucovorin) and F (5-FU) are the same, but on Dr. Nestor's recommendation, Ethan is now on Oxaliplatin, rather than Irinotecan.  His blood numbers (platelets, red and white blood cells) were pretty low today, probably due to the cancer in the bone marrow. 

Ethan's pain was getting much worse the past few days, and we're hoping the chemo will beat back the cancer a bit and address his pain.  We -- Team Remmel -- have been here before, and the chemo will hopefully address the pain and stabilize his blood numbers.  The immediate risks of having low blood numbers are infection and colds.  Also, since this is the first time Ethan has been on the FOLFOX regimen, we'll keep an eye out for different side effects, though we've already been warned by the nurses that cold sensitivity is the most likely. 

Send good thoughts our way! 

~Grace

Weekend update with visitors

I got the CT scan report faxed to me late Friday afternoon. Although in medicalese, it seems positive, with no sign of the cancer spreading within my bones or to other organs. I am a little surprised, given the increase in my bone pain and the doubling of my CEA from around 20 to around 40 during the past month. Last Wednesday I was on 50 micrograms of Fentanyl (100 times more powerful per amount than morphine) and around 10-20 milligrams of Oxycodone per day for breakthrough pain and my pain was about a 2 on a 0-10 scale where 10 is excruciating pain like I had last summer. Now, on my local oncologist Dr. Nestor's recommendation, I am on 100 micrograms of Fentanyl and around 40-80 milligrams of Oxycodone and my pain varies from around an 8 in the morning to around a 3 in the early afternoon to around a 7 at bedtime. The most painful area is my right hip and thigh, which makes me walk slowly and with a limp, and the next-most painful area is my left shoulder and upper arm, which makes it hard to raise my arm. I'm also very thirsty all the time and in the evening I have chills and a low-grade fever (highest measured: 101.2).

Friday evening Seth and I picked up Hannah and Henry at the Bellingham airport and we went to La Fiamma Wood Fire Pizza for dinner with Grace & Miles, Eric & Meredith, and Lynn. Hannah and Henry stayed with Lynn and Seth that night.

Saturday morning everyone came over here and Eric et al. made a great brunch. Afterward we all (except for Grace and Miles who visited Grace's parents in North Seattle) went for a walk through the woods to the beach at Point Whitehorn north of Bellingham. I started out driving there but I had to let Eric take over because I couldn't focus on the road due to the painkillers. Hannah took some photos (thanks Hannah!):

After we returned to Bellingham, Eric, Meredith, Henry, Seth, and I played two-on-two basketball at the playground at Larrabee Public Elementary School, which Seth used to attend. Seth's team won every time, whether his teammate was Henry or me. We returned to my house and watched the end of North Carolina's win over Duke. Then Eric and Meredith had to drive to SeaTac airport to return to Durham NC, making me sad but grateful for their visit. Hannah and Henry stayed in the downstairs apartment and Seth stayed with me, which was wonderful.

Some other pics from Hannah:

Sunday morning Lynn came over and we all (Lynn, Seth, Hannah, Henry, and me) drove up to Mount Baker. Lynn drove the whole way up and back (thanks Lynn!). We followed Seth and Lynn's usual routine and stopped at the "Wake 'n Bakery" in Glacier for yummy pastries (their motto: "Get Sconed!"). We continued to Mount Baker Ski Area, to which I had never been, not being a skier. You can ski all day for free on the bunny slope using the tow rope, which was tricky to use for some kids and adults. I had never seen Seth ski in person before, so that was very exciting for me. Henry was a less experienced skier but I was impressed by his determination. After skiing the boys did some sledding. Some photos from Hannah:

On the way back from Mount Baker we visited another of Lynn and Seth's favorite places, Graham's Restaurant in Glacier. For dinner we had Lynn and Seth's favorite dish, the "Phish tacos." They also have hemp salads and specials at 4:20 pm (are you detecting a theme in Glacier?). We played pool - Lynn started out hot but Seth and I came back and won. Seth seemed really happy to spend time with Lynn and me together. Some more Hannah pics (thanks Hannah!):

This morning Grace dropped off Hannah and Henry at the Bellingham airport. My pain was pretty bad this morning, but I had an hour-long full-body massage from Renee Hertel at mid-day, which felt great. Lynn picked up Seth from school (thanks Lynn!) and dropped him off here. On the recommendation of both of Seth's therapists, I talked to Seth about my medical situation in more detail than I ever have before. The talk felt good to me. Seth seemed sad but not overly upset. He was very sweet to me the rest of the day. I started asking him to bring things to me, because it is hard for me to move around, and he seemed happy to help out.

My parents return from Hawaii late tonight - in about 1.5 hours

I have decided to do chemotherapy tomorrow (Tuesday) morning. On the recommendation of Dr. Nestor, I plan to switch from FOLFIRI to the FOLFOX regimen. I agree with his recommendation. Despite the positive report from the CT scan, this level of pain is intolerable, so we need to try something different. Wish me luck!

love,

Ethan

Passings

I was saddened to hear recently of the deaths of two acquaintances of mine.

Shearlean Duke was the chair of the Journalism department at WWU. I met Shearlean last fall because a mutual friend knew that we were both dealing with terminal cancer - brain cancer in her case. Although I didn't get to know her well, the brief time we spent together was meaningful to me. She was a warm and kind person. There will be a celebration of her life this Sunday from noon to 4 pm at the Squalicum Boathouse in Zuanich Park.

Cyril Courtin did research on cognitive development in deaf children, like myself. I only met him in person once, at the TISLR (Theoretical Issues in Sign Language Research) conference in 1998 at Gallaudet University in Washington DC. Cyril was French, deaf, and had some health issues that I didn't fully understand but which made his movements a little spastic. Nevertheless, we managed to communicate - he using French Sign Language (LSF) and me using American Sign Language (ASL). Side note: ASL evolved from LSF after Thomas Gallaudet and Laurent Clerc brought LSF to the US in the early 1800s, so ASL and LSF are related whereas ASL and British Sign Language (BSL) are not, although the same spoken language, with minor variations, is used in the US and UK.

Cyril was an interesting, intelligent, and nice guy. We kept in touch via email and kept tabs on each other's research. I sometimes joked that it was only through the miracle of the Internet that I could be friends with a deaf guy in France with whom I did not share a language (although actually Cyril's written English was understandable - more so than my written French). I learned of Cyril's death yesterday from another researcher in our field, who asked me if I would like to contribute something for a conference to celebrate Cyril's life and work in Paris in December (I said that I could not commit to contributing something, given my own health issues). Apparently Cyril went to bed Christmas Eve and did not get up on Christmas morning. As I mentioned, he had some health issues and I knew that he was not expected to live as long as he did (he was around my age).

Ethan

Sports geek

A friend encouraged me to opine about the Celtics' recent roster moves, and I need little encouragement to opine about sports. My favorite sportswriter, Bill Simmons, has written about these moves, so I'll try not to repeat what he says too much.

The Celtics made number of moves at the trade deadline, of which the most significant was dealing center Kendrick Perkins and guard Nate Robinson to the Oklahoma City Thunder (formerly the Seattle Supersonics) for forward Jeff Green, center Nenad Krstic, and a first round draft pick. Everyone was sad to see Perkins go. He injured his knee in Game 6 of the Finals last year, which I believe cost them Game 7 and the title against the Lakers. He worked really hard to return to the court about a month ago, only to be traded away. Apparently he and his Celtic ex-teammates were unhappy about the trade, although it worked out well for Perk money-wise, as the Thunder signed him to a contract extension for a lot more money than Boston could offer, being over the salary cap ($36 million vs. $22 million for four years).

Neither Perkins nor Robinson are playing for the Thunder right now, as both are out with knee injuries, so the deal hasn't helped the Thunder much yet. Robinson is no loss for the Celtics. He was not a good backup for Rajon Rondo (Delonte West, now that's he's healthy, is a much better option), because he's not really a point guard. He's not a great ballhandler or passer and he makes poor decisions. He is a streaky and sometimes exciting scorer, but he takes some terrible shots. I recall watching a game earlier this season where he stole an outlet pass and immediately jacked up a long three-pointer, even though the Celtics had nobody back to get a rebound. Sure enough, he missed, the other team got the rebound, and the steal was wasted. Jon Barry, the TV commentator, was incredulous. He said something like: "That's a bad-team shot. That's a shot you take when you're on a bad team and you don't care about the team; you just want your shots. That's not a Celtics shot."

The trade suggests to me that the Celtics are more concerned about the Miami Heat than the Orlando Magic in the playoffs (although they might want to re-think that after Miami's collapse against Orlando last night - blowing a 24-point third-quarter lead), because they traded a guy (Perkins) who defends Dwight Howard of the Magic really well for a guy (Green) who can defend LeBron James of the Heat (well, nobody can really defend LeBron, but on the Celtics roster previously only Paul Pierce could even pretend to).

As my friend Eric pointed out, losing Perk will hurt them if they face the Lakers in the Finals, because Perk was good at defending the Lakers' big guys (Pau Gasol and Andrew Bynum) - I'm sure the Thunder were thinking about that, as they may have to face the Lakers in the Western Conference playoffs. Maybe the Celtics figured that they have to get out of the East before they can worry about the Lakers, who may not make it out of the West, although they are favored.

Dealing Perk puts a lot of the eggs in the Shaquille O'Neal basket, which is risky at his age (he turns 39 on March 6). Krstic is a serviceable backup center, and maybe Jermaine O'Neal will return from injury and give them something, but I wouldn't count on it, based on his horrible performance for Miami in last year's playoffs. The Celtics appear to counting on a center-by-committee approach.

After the trade deadline, the Celtics and other contenders scrambled to sign free-agent veterans looking for a chance to win a ring. I think the Celtics did well in signing Troy Murphy, a big guy who is a good rebounder and shooter, and Sasha Pavlovic, a versatile swingman with three-point range.

Friday update

Wednesday morning Eric, Meredith, and I walked to Clayton Beach. It was very windy and wavy but still pretty.

Wednesday evening Eric, Troy, Seth, and I watched the WWU women's basketball team beat Montana State-Billings in the second round of the GNAC (Great Northwest Athletic Conference) playoffs. WWU hosts Alaska-Anchorage Saturday evening in the GNAC title game - the winner gets an automatic bid to the national Division II tournament, although WWU should get an at-large bid even if they lose on Saturday.

Unfortunately my bone pain has increased recently, requiring me to use more painkillers to control it. Thursday morning I got Seth ready and took him to school, trying not to let him see that I was literally gasping with pain. Nevertheless, Eric and I played half-court basketball at noon, which was fun even though I couldn't move faster than a hobble due to pain in my right leg.

Thursday afternoon Eric, Meredith, and I walked down to Lynn's house, picked up Seth, and shot hoops with him at Larrabee (Seth's former elementary school). Seth really wanted to play basketball with us, and it was fun for all of us. Eric Paige, the Larrabee principal, saw us playing and came out and greeted Seth and me with big hugs. I also know Eric Paige because I supervised his sister Ashley's master's thesis at WWU.

Thursday evening we got a babysitter for Miles and Grace, Eric, Meredith, and I went out to dinner at Nimbus, one of the nicer restaurants in town (http://www.nimbusrestaurant.com/). I had a delicious dinner of local oysters on the half shell with passionfruit pearls, a bistro salad, a Nimbus slider (mini-hamburger), parmesan poached Alaskan halibut, and their chocolate dessert. Grace took some photos with her new digital camera:

This morning Eric accompanied me as I got a CT scan, which should give us more information about the location and extent of the cancer. I should hear the results this afternoon or early next week. I have chemo scheduled for next Tuesday, although I don't know if I'm going to do it, or which chemo regimen I will do if I do it (continue with FOLFIRI, which seems to be decreasing in effectiveness, or try FOLFOX, which has similar toxicity and may have slightly worse side effects).

One of the clinical trials that I am looking at wanted a recent CT scan, so I will send the results to them. There was an interesting article about clinical trials for cancer treatment in the New York Times yesterday: http://www.nytimes.com/2011/03/03/health/views/03chen.html

This evening I will pick up Hannah and Henry at the Bellingham airport and go out to dinner with them, Eric & Meredith, Grace & Miles, and Lynn & Seth.

Ethan

Good things

Some very good things have happened in the past couple of days. Sunday evening my mom, my dad, Lynn, Seth, and I went to a square dance at the YWCA, which was fun. Monday morning my mom, my dad, and I took a nice walk on the North Lake Whatcom "Ken Hertz" (my high school advisor Gary's brother) trail, before I took them to the Bellingham airport for their trip to Hawaii.

Since I was a teenager and played ping-pong at the summer camp where I was a counselor, I have thought that it would be cool to have a ping-pong table and play ping-pong with my kids someday. About five years ago I got a table and put it in our basement (I remember our neighbor Gene helped me carry it in and it was heavy!). I played with Seth yesterday afternoon for the first time in a while and he has gotten better so for the first time ever it felt like we were actually playing and it was fun for me.

Eric and Meredith arrived yesterday evening and we went to Boundary Bay Brewery & Bistro for a celebration of our friend Jim Helfield getting tenure at WWU (congratulations Jim!). Lots of good friends, Huxley folks, and kids there.

Afterward Eric and Seth played basketball on the little hoop in the basement rec room (where the ping-pong table is). Eric said it reminded him of playing Nerf basketball at our friend George's house when we were teenagers.

Today Eric and I played basketball at WWU. Four good games of four-on-four half court. We went 4-0, although most of the games were close. Eric and I got to play together, which was great. We also had Ernie, my septuagenarian hero, and Dave Rystrom for the first three games and Max Lewis for the last one. I guarded Barry Potter and then Paul Dunn. I'm home now and feel good after playing.

Ethan