Better day

Today was a better day. I had a mellow day around the house, just doing little chores but keeping busy, not laying around. I feel fine, actually good, right now. Yay! :-)

I played with Seth in the yard in the late afternoon/early evening. We played baseball and frisbee. He hit the whiffle ball so hard that he broke our plastic bat in half! Before that he nearly decapitated me with one line drive. The sun was shining and reflecting off the bay so brightly that it was almost blinding to look in that direction.

Grace, my mom, and I watched the TV show "The Office" tonight and we all laughed.

Thanks to all the people who have sent me love and encouragement lately.

Ethan

Update from Ethan

I haven't been keeping up with email or the blog lately because I've been too tired. This round of chemo is going much like the last one, which is to say, sucky. I've been tired most of the time. I usually have a couple of hours with some energy each day, more likely later in the day, but I typically spend those eating and/or trying to do some sort of physical activity, so my body doesn't waste away. That doesn't leave much time for keeping up on the computer.

Even when I have some energy, relatively speaking, it is still a great physical and mental effort to do even simple things. Unloading the dishwasher feels like running a marathon (OK, not that I actually know what that feels like, but what I imagine it would feel like for me). Contemplating making a phone call feels like contemplating doing your taxes (actually, I don't really mind doing my taxes, but I was trying to think of something that many people dread doing). This fatigue is not like a normal sleepy tired. My body works OK (well, my digestive system is still wonky, but otherwise I'm mostly physically functional). I just feel like a toy whose battery has run down. Or a wrung-out dish towel.

I also hate the mental fogginess that comes with chemo (known as "chemo brain"). It's scary to feel like your mind is slipping away. Being on chemo is like being half alive. When I feel physically OK, I can still enjoy life. But I find it very difficult to enjoy life when I feel physically crappy.

Today was a little better. I biked to the university (for the first time since I got sick - I used to bike there every work day) and played basketball. I only played one game of half-court, but it was fun. I wasn't sure I was going to play at all, because I wasn't feeling great, but I don't have many opportunities, so I'm trying to take them. I'm also trying to pace myself, because when I have energy I sometimes overexert myself and pay for it with fatigue the next day. Anyway, we won the one game I played, with a team of me, Lucky (who I enjoy playing with), Max (who played great), Al (who I hadn't seen in a while), and George (who has developed an outside shot). I made the winning shot (left-handed baby hook) despite Tenacious D by Dave Curley.

It was strange being on campus in the middle of the day, with all the students there, but not being there for work. I felt like a ghost. I would have liked to run into friends, but at the same time I didn't want to, because I sometimes feel like I don't know how to have a normal casual conversation anymore. I can try to make small talk, which I've never been good at anyway, but it sometimes feels especially small given the size of the elephant in the room (my health status). But I don't necessarily want to talk about my health status either. I feel like there's nothing much interesting to say about it (it sucks, but you do the best you can). I imagine it must be difficult for other people to know what to say as well.

Today was also a little better mentally. When I am really fatigued, I can't even read. But today I started a new book: America's Constitution: A Biography by Akhil Reed Amar. My sister gave me this book a while ago (she knew I wanted it) and I started it but didn't get very far before getting distracted. I restarted it and I am enjoying it so far. It's like a good college course on early American history and constitutional law (Amar is a professor at Yale Law School).

OK, it's getting late and I am going to get ready for bed. As a final note, today, out of curiosity, I made a list of all the medications I have received since I got sick. I'm not even sure this is all of them, but it's quite a long list!

Metronidazole

Hyomax

Doxycycline

Tramadol

Docusate Sodium

Ondansetron

Oxycodone

Cephalexin

Oxycontin

Famotidine

Fentanyl

Prochlorperazine

Polyethylene Glycol

Relistor

Dexamethasone

Emend

Zolpidem Tartrate

Amitriptyline

Sertraline

Alprazolam

Lorazepam

Dilaudid

Senokot

Aloxi

Decadron

Atropine

Leucovorin

5-Fluorouracil

Irinotecan

Avastin

Zometa

Tuesday update

Hi Everyone,

Grace here again...I know some of you check this blog regularly, so I'm sorry we've been falling behind.  It has been a rough few days for Ethan -- pretty severe fatigue.  But good news is that he's on campus (as I write!) playing basketball.  Blood numbers are holding steady, so another bit of good news. 

Thanks for your continued good thoughts!

Better today

This morning Grace, Miles, my mom, and I drove down to Mt. Vernon (town south of Bellingham in the Skagit Valley), where they had a farmers market and kids activities. Some cute pics of Miles: http://remmel.shutterfly.com/1858
In the afternoon I mowed the lawn and watched some of Stanford's win over Notre Dame (Go Cardinal!). Over to my friend Troy's bachelor pad for dinner (St. Louis style porksteaks) and more college football.

Ethan

Crash and burn

Fatigue hit me like a ton of bricks today. I felt so good yesterday, and so terrible today. I spent the day laying in bed, too tired to move, talk, or read. Not sleeping, just paralyzed. Alive, but not living. Not good. Just wanted to let people know that I may not be responding to emails or messages regularly for a while if this fatigue continues.

Ethan

Basketball!

I got my chemo pump disconnected this morning. I was feeling surprisingly good so decided to play basketball, as Tuesdays and Thursdays are half court days at the university. This was my third time playing basketball since I returned to the court. I played four games of half court, the most I've played so far, and I felt the best physically that I have so far, maybe 75% of normal. My teams won all four games. Although I played fine overall, in the interests of full disclosure, I did miss a lay-up, many of my jump shots were short, I airballed at least one 3-pointer before I stopped taking them, and I missed a very makeable shot that would have won the first game (although we won anyway). We won the first game of 5-on-5 with me, Tim, Lucky, Mike, and Ernie (our septuagenarian and my idol). We then split into two games of 3-on-3. We won three times with a fun team of me, Gary, and Lucky - both good outside shooters with good court awareness. We weren't the quickest team (including myself these days), but we played good help defense. On offense, we had some nice inside-out action, dumping the ball to me in the post and then kicking it out for 3-pointers if the defense collapsed on me. I walked home and now I think I'm ready for a nap! :-)

Ethan

Update

Jon Burke left Monday after a nice visit. Having him here definitely helped me get up off my butt. I continue to be grateful for how my Bay Area friends have supported me despite the distance. Speaking of which, I am planning to visit the Bay Area at the end of October! Eric is planning a work trip to SF for the last week of October and then staying through the weekend. I would like to come down for some or all of that time, to see him and as many of my other friends as possible (you know who you are!). I am considering taking a chemo round off beforehand, to try to make sure that I am feeling good for the trip.

My mom arrived back in Bellingham Monday afternoon, after getting up at 4:30 am to fly out of Rochester NY (where she and my dad were visiting my sister and her partner and their two boys). By that evening she had already gone grocery shopping and prepared us a yummy dinner.

Yesterday I had chemo. I felt sick to my stomach afterward, but I actually feel relatively OK today. Stomach is still a little iffy, but my energy level is fine. It's nice and sunny here, which helps.

Fall quarter classes started at WWU today. It's weird to not be teaching in the fall for the first time in a decade (8 years at WWU and a couple years at SF State before that).

I was thinking about a lot of things last night (instead of sleeping), including laughter. Studies show it is good medicine. I don't have measurements, but I'm sure I laugh less than I did before I got sick. Same goes for Grace - I hear her beautiful laugh pretty often, but not as often as before. It's understandable, but still too bad.

But sometimes my situation seems so surreal or absurd (to feel perfectly healthy in March, be near death in June, and now to feel relatively OK but be told that my time is limited) that I can actually laugh about it (beats crying). I had a good laugh with Tami on the phone the other day when I was talking about how I am literally toxic after chemo (I know, doesn't seem funny, but it was to us at the time).

I am also regaining my interest in sports. For a while it seemed too meaningless to follow. But now, although I recognize that sports are essentially arbitrary, they can be entertaining, and that's not meaningless. Summer is also a slow time for sports that I care about (basketball, football, and baseball - the Red Sox won't be in the playoffs, but the SF Giants might be). But now football has started up, and the NBA season kicks off October 26, with my Celtics against the new-look Miami Heat.

Speaking of football, Jon and I were talking about whether we would let our kids play football (he played football; I didn't). I like watching football, although I do so with some guilt, as I recognize that it's not good for the players' health (they are essentially modern-day gladiators). There is also a low ratio of action time to actual time, as soccer fans are fond of noting, although I would reply that there are also more exciting moments in football than in soccer (in my opinion).

OK, gonna go pick my mom up so we can go for a walk while the sun is out!

Ethan

Vancouver

Jon Burke, Seth, and I drove up to Vancouver BC today. We had lunch at the Public Market on Granville Island, with views across False Creek to downtown Vancouver. We visited the Vancouver Aquarium. Highlights: the beluga whales, the new baby dolphin, the shark feed, and the "4D" cinema (a 3D movie with some surprising special effects built into the theater). Pics: http://remmel.shutterfly.com/1848

Ethan

What a difference a day makes...

Yesterday I felt terrible and lay in bed most of the day feeling sorry for myself. My friend Jon Burke arrived from the Bay Area for a weekend visit. I also talked to my friend Tami in the Bay Area in the evening, which was helpful. She is a therapist and she made me write down some plans for the weekend.

Today I woke up and felt much better. Grace, Miles, Jon, and I went to the monthly Swedish pancake breakfast at the Sons of Norway hall, with live accordion music accompaniment. Then I went to the monthly cancer support group meeting at the local cancer center. I hadn't been to one of these meetings before. There were only three other people there - the cancer support coordinator and an older couple. I found it helpful nonetheless, and I would like to go to the next one. Then Jon and I picked up Seth from Lynn's house and went to the farmers market and had lunch there. I had Ethiopian food, which I like. Then Jon, Seth, and I played "Settlers of Catan" (a board game) at our house. Jon and I dropped Seth off at Lynn's (they are going to a party tonight) and drove down Chuckanut Drive to Larrabee State Park and walked to Clayton Beach. It was a beautiful warm sunny evening. I waded in the water and called and talked to my family (my parents are visiting my sister). We came home, I cooked dinner (Siamese chicken) for Jon, Grace, Miles, and I, and now Jon and I are watching college football (Go Stanford!). Grace made a yummy plum crumble with our plums and I had three servings for dessert. All in all, a really nice day. Thanks to Jon for being here for me.

Ethan

Update from Ethan

Hey, this is Ethan. Thanks to Grace for updating the blog. I have not felt well enough to blog lately, and when I have been feeling OK, I haven't felt like sitting in front of the computer.

I have some good news and some bad news. Good news: my CEA (blood marker of cancer activity) is down to 1.0, from 1.2 a few weeks ago (lower is better). Normal range is 0-3. I am not in any serious physical discomfort - I have some aches and pains, but nothing too serious. As Grace mentioned, Seth and Miles have been playing together well lately. Miles has a great laugh which cracks all of us up. He must get that from his mother. Not that his laugh sounds like hers, but Grace has a beautiful laugh - one of the many things I love about her.

Bad news: this round of chemo has stunk. I have been physically and mentally tired most of the time. I have spent many hours basically motionless, without the energy to even read or talk. I continue to have little appetite. I eat because it's mealtime and I know I should, but not because I feel like eating. I felt better today and, as Grace mentioned, I even played basketball for the second time since I got sick. Three games of 2-on-2 half court. I felt slow and clumsy and got tired quickly, but it was still fun.

Not so fun was our afternoon meeting with my oncologist. Here is the situation: I can continue to do chemotherapy every two weeks, as I have been doing. I will probably feel crappy a lot of the time, although I may feel OK some of the time. My blood numbers will probably never return to normal as long as I am doing chemotherapy, so I will continue to be somewhat anemic (low red blood cells, low energy) and neutropenic (low white blood cells, susceptible to infection). The toxicity of the chemo drugs accumulates in the body over time, so it is expected that you will feel worse and worse with successive rounds, until you can't take it anymore. Even if I do tolerate the chemo fine, it will eventually stop working. At some unknown point the cancer will stop responding to treatment and start spreading again anyway.

Or I can stop doing some or all of the chemotherapy. I might feel better in the short term, but my oncologist guessed that, given how aggressively the cancer was spreading before the chemotherapy, it would probably start spreading again relatively quickly, which I guess means pain and death. By the way, my oncologist did not present things this starkly. He was more abstract (e.g., "the goal is to balance quality and quantity of life"), but I am summarizing the substance of what he said.

Needless to say, I am not real happy with these options. You can try to sugarcoat or spin it, but this is the reality. Given this reality, how do I deal with the situation? I have felt angry sometimes. Angry that I may not get more years with Grace. I want to grow old with her. It's hard to find someone you're really compatible with, and I finally did. But there is nobody to be angry at. God? Fate? Chance? I'm considering denial. Trying not to think about it. Pretending that I'm healthy, or going to be healthy in the future. But it's hard to maintain with multiple doctor appointments per week, pills to take, etc. I can hope for a miracle. Some people do survive for many years with this type of cancer.

In my rational moments, I think that, well, just try to enjoy the time that I do have. I do have some good times still. Savor those. I played baseball in the yard with Seth and Miles Monday evening. That was fun. I played ping-pong with Seth in the basement rec room tonight, while Miles played around us. That was fun. I just watched last season's finale of the TV show "The Office" with Grace (our favorite show to watch together; the new season premiere is next week). I laughed.

Ethan

Still hanging in there...

Hi Everyone,

Grace again.  Ethan is still battling a rough week, but things are getting better.  Miles and Seth are playing with him downstairs in the basement, and I hear lots of rumbling (cars) and footsteps.  The boys are getting along great; Miles adores his older brother, and I think Seth is enjoying playing with Miles more now that he's older.  Ethan played basketball on campus today -- always a good sign -- and Jon Burke is coming to visit this weekend.  Stay tuned!

Low-key weekend

Hi Everyone,

Guest blogger Grace here.  Ethan is having kind of a rough weekend post-chemo...pretty fatigued and low energy.  Luckily, we haven't had any plans.  As I tell Ethan, his "plan" is to get stronger and feel better.  My dad's 75th birthday is today, and my parents came up to Bellingham yesterday so we could celebrate.  They picked plums, we sang for him, and had cheesecake.  And Kathy...not to worry, my mom brought us lots of good Taiwanese food. 

Unfortunately, today was a RAINY and gray day, not conducive to long walks, which always helps E's spirits.  But the forecast for the rest of the week, clearing and 70s by the end of the week.  So send good healing thoughts our way!

Thanks for your friendship and love,
Grace

Chemo days, ugh

Yesterday I felt sick to my stomach all day, especially later in the day. Made it hard to eat, although I did. Did my boardwalk walk in the evening, but no mom to do it with me. The city is closing the old wooden section of the boardwalk soon to replace it, so I won't be able to do my usual route for several months. Went to bed early and slept almost 12 hours. Still tired during the day today - took three naps. Did some physical activity nonetheless - some yard work, a couple short walks, shot hoops briefly. Gave Miles a bath, which was the highlight of my day. Going to bed early again tonight. Hoping to feel better tomorrow.

I got disconnected from the chemo pump today. After my infusion day, which was Tuesday, when I spend most of the day at the infusion center getting all sorts of drugs dripped into me, I still have to carry around a little electronic pump (kind of like a big Walkman) for two days, as it slowly infuses one of the drugs through the port which was surgically installed in my chest when I was in the hospital. When not in use, the port just looks like a little bump under the skin. When Seth saw it, he said I looked like Iron Man. I wish.

On a day like today, I took eight pills throughout the day, plus applied a painkiller patch. I hate taking so many pills, as it makes me feel like a sick person, which I am, but I don't like to be reminded of it. On non-chemo days, I can take only four pills, most of them just vitamins recommended by one of my doctors.

Some good news: my Social Security disability application was approved (thanks Grace and dad for working on that!). This will provide monthly payments to me and Seth and Miles, starting six months after my disability started (which was late May, so payments will start in December). Let's hear it for socialism!

Ethan
(By the way, I've been signing my name to my posts because Grace also has the password to this account, so it's possible that she might be posting to this blog at some point.)

Eventful day

My dad headed back to Maine early this morning after a nice six-day visit, highlighted by our trip to Orcas Island. Seth had his first day of 3rd grade. Lynn brought him to school as I had chemo during the day. He is in a split 3rd/4th grade classroom (all the classrooms are split grade at his elementary school - it's part of their educational philosophy, which I like) and he goes to three different classrooms during the day with different teachers. Seth has several boys that are friends in his class (it's the "S" team: Seth, Sean, Spencer, and Sam). Lynn said he liked the last classroom of the day, which was Science (yay for science!). My mom and I visited with him after school, as well as with Lynn and Lynn's mom Mary Jane, who arrived Sunday to visit Lynn and Seth.

Then my mom departed. She has been here since May 18, when I first started to get really sick, so almost 4 months. She has been working hard so she deserves a break, and I hope this feels like one to her. She is headed back to Maine and then spending a weekend in Rochester visiting my sister and her family before returning to Bellingham in two weeks, just in time for my next chemo on September 21. My mom has been with me for every chemo infusion so far, so why miss one, when they're so fun! But seriously it's nice for me to have her with me, even if the drugs don't make me the most scintillating company. For example, tonight I called my friend Troy to tell him something, completely forgetting that I had already called him earlier, while under the influence of the chemo drugs.

One part of my mom's mission was accomplished, in that my weight is now basically back to where it was pre-illness. Now I need to maintain that weight and work on strength and stamina, through some combination of walking/hiking, biking, basketball, and my rowing machine (which is good for rainy weather, not that we have any here in the fall and winter). I'm a little nervous about my mom being away, in that Grace and I will have to relearn how to feed ourselves. I know it's possible, as we used to do it before, but it will be a challenge to eat as well and as healthy as my mom fed us. Fortunately, my mom (and sister, when she was here) froze a lot of healthy and yummy food for us, so we should be fine. We also have Grace's mom, a fabulous Taiwanese cook, to fall back on.

My mom's departure is an opportunity to reflect on her time here. Despite my health situation, we have had a wonderful summer together in many ways: exploring hikes in the area, walking the boardwalk by the bay in the evenings, playing with Seth and Miles, ferry trips to Victoria and Orcas Island, etc. I feel like I have gotten to know my mom better, which feels like a funny thing to say about someone you have known and been close to your whole life, and I have renewed and increased respect for her as a person, which also seems like a funny thing to say about someone you love without question or reservation. But what impresses me most about my mom are her values. In particular, the value of caring for others, which I see very clearly as she cares for me, but which is part of her general way of living. Unfortunately, my mom has been pressed into the caregiver role many times in her life. Fortunately, she is good at it. I think those values of caring for others must come from her family upbringing (I remember her dad, my Gramps, as an extraordinarily kind and gentle person), and I certainly hope those values will be perpetuated in my family and my sons. So three cheers for moms, and my Mom in particular!

Speaking of good people, my friend Eric called tonight and we had a chance for a relaxed chat for what felt like the first time in a while. Our talk reminded me of why I love him so much: he is smart, funny, interesting, and just generally wicked awesome. One of the best decisions I ever made was when I walked into the Ball Room (our homeroom) in Storer House at Waynflete School (a new school for me) on the first day of 5th grade and walked right over to where Eric and Seth Berry were sitting. They became my best friends and I'm happy to say that we're still friends today.

Ethan

Back from Orcas Island

Grace, Seth, Miles, my mom, my dad, and I just returned from a nice trip (3 days, 2 nights) to Orcas Island. We took the ferry from Anacortes on Saturday morning. We rented two nice cottages on the east side of the island, with views back toward the mainland. We did some nice hikes - even Miles hiked! The weather was good the first two days and rained the last day, which was OK because we were parked in line to wait for the ferry back to Anacortes (you have to get there hours in advance, especially on a busy day like Labor Day). Pics: http://remmel.shutterfly.com/1772

Ethan

Golf, hoops

My dad, Seth, and I went to a driving range this morning. Seth has shown an interest in miniature golf, which my dad is hoping will transfer to real golf. My dad tried to teach Seth that a golf swing is different than a baseball swing. I still haven't really mastered that distinction, so my dad's coaching record is perhaps questionable. Maybe Seth will prove a quicker study.

After dinner, Seth and I were walking over to the schoolyard to shoot hoops when Seth was hailed by a happy and familiar voice. Our friends Emmelina (mom) and Lisiana (daughter) were visiting someone in our neighborhood. Seth and Lisiana have been friends since they were infants. Lisiana asked if she could come with us to shoot hoops, so the three of us played at the schoolyard as the sun was setting (another beautiful sunset over the bay and mountains - we are spoiled here).

We leave for Orcas Island tomorrow morning, returning late Monday, so probably no blog posts until after we return. I hope I will have some nice pics, weather permitting (knock on wood).

Ethan

Basketball!

I played basketball today, for the first time since I got sick! I've been shooting around in the evenings, which I find relaxing, but this was the first time I've played a real game with other people. Half-court, so I wasn't running up and down the court, but still, it's a start! (Note: if you don't speak hoop, you may not follow all of the following, but you can get the gist.) I played two games of half-court to 21, by 2s and 3s. We won them both. I scored the winning basket in the first game and assisted on the winning basket in the second game. I wasn't moving as quickly as I used to (guys like Nick Sanchez seemed to be moving at warp speed), and I didn't go for any rebounds that weren't coming right to me, but I didn't embarrass myself. Once I took and made my first shot (spin dribble, short right baseline jumper), I felt things would be OK.

I remember many plays, but I'll just tell you about the two winning baskets. On the first, I had the ball, left foul line extended. I passed to Randy Senf on the baseline. My man turned his head to look at the baseline, and I cut behind him to the hoop. Randy fed me a perfect bounce pass for a give-and-go lay-up, game over.

On the second, I had the ball right foul line extended. Randy flashed from the foul line to the right block (he was cutting well without the ball all day). I fed him the pass to his outside shoulder and he banked it in, game over.

It helped our team that Lucky Tedrow made a bunch of 3s. I was 1 for 1 from 3-point range (I was wide open, but still). My buddy Troy showed up and we got to play together in the second game. I got to feed him in the post for his patented fade-away-and-kick-the-defender-Reggie-Miller-style shot. I was fortunate that my defender (Mike Henniger, former football player) did not rattle my bones with any picks, as he can do.

In other news, my dad arrived late last night and will be here through Labor Day. Miles was very excited to see him this morning and requested to play with "Chuck" all day. Seth came over from Lynn's house around Miles's bedtime and took over playing with Grandpa - they played golf in the yard as the sun was setting.

We met with my oncologist this afternoon. For the next round of chemo, which starts Tuesday, I decided to add back the drug that we had taken out for this round. I'm trying to balance cancer-fighting potential with side effects/quality of life, but I'm going with cancer-fighting potential for now. The fact that everything is so unpredictable, however, makes these decisions unclear. We don't really know whether the chemo drugs are having any additional benefit at this point (because there's no easy or clear-cut way to measure the extent or spread of the cancer), and we don't really know what the side effects will be from round to round. So we'll see and hope for the best.

Ethan

My pity party is over

Sun is shining today. Finished trimming the hedge. Feeling much better.

Ethan