My not-so-good day

I read someone else's blog the other day that provided a lot more insight into that person's state of mind than I think mine does. In this blog (and in my journals), I tend to be more objective, just reporting "what I did today." I haven't talked much about my emotional state, because frankly it's not always positive, and I don't want to be whiny or complain ("oh, poor me!"). I also hate to be negative because I feel it's disrespectful and potentially discouraging to the people around me who are working so hard to support me - I owe it to them (and especially to my kids) not to wallow in self-pity.

However, in the interests of honesty (and perhaps seeking some sympathy - I'm not above that), I'll talk about how I was feeling today, which was not good. The cool rainy weather here didn't help. I was hoping to finish trimming the hedge and/or play basketball, but I didn't end up doing either.

I am having trouble accepting that my life is not going to go back to the way it was before I got sick. It's a cliche, but I do sometimes feel like this is a bad dream, or a bad movie, or some sort of thing that is going to end and then things will return to normal. But they are not going to, and I am not happy about that. I liked my old life a lot, and I do not like this new life nearly as much.

I also struggle also with the fact that this situation is not under my control. Other challenges in my life I have been able to overcome with effort. But no matter how hard I try, I can't make this problem go away. I don't want to be sick, but I don't have a choice. I don't want to think of myself as a sick person, nor do I want others (again, especially my kids) to think of me that way, but it's the truth. I want others to just treat me normally, and yet often I need help.

I feel like I'm reconstructing my life, or rather constructing a new one. I can't remember how my old life used to go. How did I get up in the morning? What did I used to do with my day? I feel like there are not nearly enough hours in the day anymore. There are so many things that I want to do, but the time slips by so quickly. Simple things like bathing and eating seem to take forever, perhaps because they take more effort than before. How did I used to work full-time, help take care of the kids, cook, read books, watch movies, keep track of the news and sports, etc.?

Speaking of the news, I feel so out of touch these days. Things outside my immediate life often seem abstract and irrelevant. Plus the news is so often depressing - wars, disasters, economic downturns, people being cruel to each other, etc. I know people often complain about the news focusing on the negative, but I feel it now more than before.

However, the negativity in the news can be contrasted with what I see in my immediate life, which is people being good to each other, and to me. One silver lining of my health situation is that it has exposed the kindness and generosity of the people around me. Grace, my mom, my family and friends in Bellingham and those who have visited from far away, my neighbors - everyone has stepped up and helped out. Not to get all kumbaya, but if only everyone around the world could show that spirit all the time!

Ethan

Yard work

The weather was nice today - sunny and warm but not hot. I worked in the yard, primarily trimming the hedge but also other little jobs. I like yard work. I like being outside, the physical activity, and the tangible results (a trimmed hedge!). I like tending my little plot of land and all the plants growing there (although I'm no master gardener - I spend most of my time whacking weeds back). After eight years of pruning and picking, the fruit trees in particular feel like old friends.

Speaking of which, it's still raining apples here, if anyone wants any (nobody responded to my previous offer - is it that hard to give away apples in Bellingham this time of year?). My mom has been furiously canning applesauce, baking apple cake, etc., but even she can't keep up so I may have to call the gleaners (last year they picked 227 pounds of apples and 21 pounds of pears from our trees). The plums are getting close too.

Ethan

George departs

My good friend George headed back to SoCal (Redlands) this evening. It was good to see him and to catch up. This morning he and I drove up Mount Baker Highway and hiked up the Yellow Aster Butte trail. The weather was iffy (it started to rain on the way down just as we got back to the car), but the mountain scenery was still pretty. Pics: http://remmel.shutterfly.com/1766

Ethan

Clayton Beach

Grace, Miles, George, and I walked down to Clayton Beach in Larrabee State Park. Miles and I climbed on the rocks. Pics: http://remmel.shutterfly.com/1740

Ethan

Miles's Birthday Party!

Miles turned 3 yesterday. This morning, Grace, Miles, and I took the Amtrak train from Bellingham to Edmonds as a treat for Miles, who loves trains. Grace's parents picked us up and we enjoyed a delicious lunch at their house prepared by Grace's mom, and also attended by her brothers Gene, Gary, and Greg, and her nephews Jordan and Jackson. After Miles's nap, we all (minus Gene and Gary) drove up to Bellingham. Grace had reserved the picnic shelter at Lake Padden and prepared a truck-themed party for Miles, who also loves trucks. We met more friends and family there: my mom and Seth; Jim, Crispin, and Eric; Susan, Chris, and Elizabeth; Kim and Nora; Andy, Sam, Eli, and Micah; and my friend George, who just arrived for the weekend from Southern California. It was a beautiful sunny evening and a nice time.
Pics: http://remmel.shutterfly.com/1703

Ethan

The other side of the story

A few things have happened recently that have made me think that I may be painting an overly rosy picture of how things are going on this blog. Overall, things are going well, in that the chemo has knocked the cancer back, I am more active and independent now (certainly compared to a few months ago), and we have had a lot of nice visits from good people. I try to be positive on this blog, and in general. But it's not all picnics, fun trips, and pretty sunsets around here. As you can imagine, having incurable cancer and chemotherapy for the foreseeable future has its downside. I don't talk about the frequent doctor appointments, multiple medications, the struggle to eat when I have no appetite, or the fact that even on my good days I often feel tired and/or sick to my stomach, because I find these these things boring and depressing, but they are part of my reality these days. Sorry to be a downer today, but I felt the need to provide a more balanced picture.

Ethan

Seth arrives; Eric departs

Seth returned from 2.5 weeks in Wisconsin yesterday. This morning Seth, Eric, Grandma Kathy, and I played some spirited games of croquet in the yard. In the afternoon we went to Lake Padden, where Seth ran his remote control fireboat (pics: http://remmel.shutterfly.com/1696), Grandma swam, and I walked around the lake.

Sadly, we then had to drop Eric off at the airport shuttle stop, whence he began his long journey back to North Carolina, via Philadelphia and the Jersey shore. This was his third visit to Bellingham since I got sick, reaffirming his title as the world's best best friend. Ironically, after being careful with sunscreen at the Jersey shore, Eric got sunburned during his trip here (yes, the sun sometimes shines in the Pacific Northwest, but don't tell anyone!).

Ethan

Good news!

Two pieces of good news:

1. My CEA (a blood marker of cancer activity) is down to 1.2, which is down from 1.6 two weeks ago, and still in the normal range of 0-3, where lower is better.

2. My weight is now within 5 pounds of my target pre-illness weight. So I think I can relax a little on the weight gain front, although I definitely need to continue to eat a lot and eat well to maintain my weight and health. But I think I can shift a little of my focus to getting stronger and fitter. I am in decent shape for walking and light hiking, but I'm a long way from being in basketball shape, which is a goal.

Ethan

Back from Victoria

We had a very nice trip to Victoria BC. Pics: http://remmel.shutterfly.com/1633

Ethan

Congratulations Ashley!

Congratulations to my master's student Ashley Ruggles, who graduated today! I advised and worked with Ashley over the past couple of years, including on her thesis project, which examined the understanding of emotion by autistic children and adolescents. The summer commencement ceremony was this morning, and I was able to attend and "hood" Ashley (place the master's hood over her shoulders during the ceremony). My mom and friend Eric attended as well, and afterward we were able to meet and talk with Ashley's family, including her brother Eric Paige, who is the principal at my son Seth's elementary school (and a wonderful principal and person, if I may say so). Ashley is going to continue to work with autistic children and adolescents as a counselor and behavior analyst, and I am very proud of her and her accomplishments.

We are taking the Victoria Star ferry from Bellingham to Victoria BC tomorrow morning, staying the night there, and returning Monday evening, so probably no more blog posts until after we return.

Ethan

Good Day

I felt good today, the best I've felt in a while!

Grace and I took Miles to the Northwest Washington Fair in Lynden, north of Bellingham. Miles enjoyed the farm animals and carnival rides, although he was a little scared of the large animals (horses and cows). Pics: http://remmel.shutterfly.com/1613

In the evening, Grace and I stopped by my friend Ben's birthday party at Cloud Mountain Farm & Nursery in Everson, east of Bellingham (we had a very rural agricultural day!). It was a nice time and a beautiful evening.

My best friend Eric arrived late tonight. He was at the beach on the Jersey shore this morning (he said he still had sand in his ear) and here in Bellingham tonight. Air travel is an amazing thing.

Ethan

A completed project

Thank you to my neighbor Dave Akre for helping me to lay gravel on the parking areas down on 13th St (which used to turn into a muddy mess in the winter) and on Easton Ave (which needed some more gravel). This is a project that I'd had on my to-do list for a long time. Dave had previously put gravel on his parking area on 13th St, so I talked to him yesterday evening about how I'd like to do the same thing for mine sometime. Dave apparently isn't a skilled procrastinator like me, because he called and ordered the gravel for me, a dump truck delivered it this afternoon, and when I got back from my doctor's appointment he was spreading it out! I barely had time to grab a rake and help him spread it out so I could feel like I contributed at least a little bit.

As a partial thanks, I'd like to mention his business (this is my idea, not his), in case anyone needs a contractor: Dave Akre Construction, specializing in new construction and remodeling, (360) 671-2112. I can certify that he is a nice guy (he has also been mowing the areas outside our hedge ever since I got sick).

Between Jane and Gene on one side, and Dave and Julie on another, we couldn't have nicer and more helpful neighbors. I feel very fortunate to have landed among such good and generous people.

In other news, I felt tired today, not the crushing fatigue of my previous round of chemo, which thankfully I have not felt during this round (knock on wood!), but still a little discouraging, as I expect to feel relatively good at this late point in the two-week chemo cycle. It's hard for me to distinguish between what might be side effects of the chemo versus just being a little worn out from being more active lately. In any event, I tried to take it easy today and I feel a little better this evening.

At my appointment with my oncologist Dr. Nestor today, we decided to take a break from one of the chemo drugs that has the most side effects for my next round next week. This wasn't an easy decision for me, as we obviously don't want the cancer to start spreading again, but the next couple weeks are important to me for a number of reasons, so I want to feel OK for them. During the next couple weeks, my best friend Eric is visiting from North Carolina, my older son Seth is returning from 2.5 weeks in Wisconsin and has two weeks before school starts, my younger son Miles has his 3rd birthday, my friend George (who was one of my best friends growing up and who I haven't seen in a while) is visiting from Southern California, and my dad is visiting from Maine and we are going out to Orcas Island for a few days. Plus the existing research, while never perfect to answer questions about an individual case, suggests that taking a break from this drug does not hurt long-term outcomes.

The best news I've heard lately is that our friends Julie and John welcomed their new baby Xavier into the world on Tuesday night, and that mom and baby are doing well. They are great people and I am happy for them and their family!

My friend Ben gave me a gift the other day - the gift of realizing something good. I mentioned that he and I took a hike on Sunday, during which we talked about a lot of things, including living and dying. One question that he asked made me realize that I have no regrets about my life, and that is something that I should appreciate and not take for granted. It would be much harder to contemplate dying if I felt regrets - I wish I'd done this or that differently - but I really don't feel that way. I've been able to do the things I wanted to do, and live the life I wanted to lead, and that's a very good thing, for which I am thankful.

Ethan

Basketball!

A big thank you to the members of the NBA (Noontime Basketball Association - the pickup game at WWU)! I stopped by the court today for the first time today since I got sick in May. It was great to see everyone. When the players on the court noticed I was there, I believe Dave Rystrom called time out and gave me the first hug and then I got hugs from everyone, which felt great. That was the one of the nicest moments I've experienced in a long time, so thank you! I was so happy that I forgot to cry, although I cried a little later when talking to Ted Pratt about what a blessing it was to be there, after what I've been through.

To any members of the NBA reading this or hearing about it: I am grateful for all the happy hours I've spent with you, enjoying an activity we all love: basketball. You are a wonderful group of people, and I feel lucky and privileged to know you and to be a part of this group. I hope to work myself back into shape so I can be out there on the court with you again!

Although I wasn't feeling great today, I was really tempted to try to play, but I'm not ready yet, so I just shot around and watched the games, which was fun. I tried jogging up and down the court, but I haven't tried a real run yet. I would like to try some half-court sometime, although with chemo next week, it might be a while before I have a chance.

Ethan

Anyone want some apples?

I did some yard work today and noticed that the fruit on our trees is coming along nicely. In fact, one of the two apple trees (the one further from the house, that makes bigger apples) has lots of apples that are ready to pick. Some have fallen on the ground already. I encourage anyone to stop by and pick some. Even if we're not here, help yourself. I don't want them to go to waste, and there are more than we could possibly use.

The smaller apples from the other apple tree, the pears, and the plums will be ready to pick before long. Actually, you could probably pick the smaller apples from the other tree already, if you wanted.

I prefer to give the fruit away to friends if possible, but in past years I have also donated fruit to the Bellingham Food Bank via the Small Potatoes Gleaning Project. It's a great program, and I would like to make sure that other people who may have fruit or produce to donate are aware of it. They will come and pick the fruit and deliver it to the food bank. Max Morange is the program coordinator: (360) 739-5274, glean@bellinghamfoodbank.org

Ethan

Monday update

Thanks to my friend Ben (owner and operator of one of our favorite businesses in town: Mallard Ice Cream!) for answering my plea for a hiking partner on Sunday (yesterday). We drove up Mount Baker Highway and tramped up the Goat Mountain trail (my idea), which switchbacks straight up for 4,100 feet. We didn't get all the way to the top before we had to turn around due to time, hunger, and (at least in my case) exhaustion, but we did get some nice views of Mount Shuksan through the beautiful tall trees. Pics: http://remmel.shutterfly.com/1606

Today (Monday) I didn't feel great, so I took it easy (two naps, no hikes). But I still wanted to do something, so I washed all the windows of our house, inside and out (except for the ones that Michael was kind enough to do when he was here). Grace and my mom took Miles to the beach in the afternoon (it has been hot here for the past few days - in the 80s, which is hot for Bellingham - although it is forecast to cool off quite a bit over the next few days).

After a yummy dinner prepared by my mom, I went to the weekly trivia contest at a local bar with friends Larry, Dave, Chris, and Alan. My contributions did not help their team rise in the standings, but it was nice to see folks.

Ethan

Nice Day

Mom and I tried to hike in the Canyon Lake Community Forest, but the gate to the access road was locked (apparently the road has been washed out since January 2009, unbeknownst to me: http://www.co.whatcom.wa.us/parks/trails/canyonlake.jsp). We regrouped, however, and did a short scrambly hike to Racehorse Falls, which was pretty (see pics at: http://remmel.shutterfly.com/1597)

My friend Troy (back from a couple months in Costa Rica) came over for dinner and then we walked down to Boulevard Park, where we met some other folks, including my friend Ruth (soon off to Switzerland for a year), and heard and danced to a Vancouver band that I like, the Clumsy Lovers (http://clumsylovers.com/music/), as the sun set over Bellingham Bay. It was a gorgeous warm clear evening. As we walked home, the moon was reflecting on the water.

Ethan

Anyone want to go on a hike tomorrow (Sunday)?

I'm feeling surprisingly fine and, assuming that's still the case tomorrow (Sunday), looking for a hiking partner. Grace is in Seattle and I'd like to give my mom (my usual walking partner) a break. I was thinking about Goat Mountain off Mt. Baker Highway (5-8 miles round trip - I'd probably aim for 5 - with significant elevation gain but apparently nice views near the end), which I have never done, but I could be easily convinced to try something else!

Ethan

Another good day!

Nice sunny warm day. My mom, Michele, and I walked a little over 4 miles on the North Lake Whatcom Trail (also known as the "Ken Hertz Trail" for a former mayor of Bellingham, advocate for local parks and trails, and, coincidentally, the brother of my former advisor and math teacher in high school back in Maine, Gary Hertz). Mom went swimming in the lake, which she enjoyed.

After a dinner graciously provided by the Wagner family, Grace, Miles, and I went to the free evening concert at Elizabeth Park, where, coincidentally, we ran into Kerri, Sean, and Erin Wagner (our dinner providers) leaving as we were arriving.

After a second dinner when I got home (I'm still working on my weight, which is now within 14 pounds of my target, pre-illness weight), I walked over to the Lowell Elementary School playground and shot some hoops, which I've been trying to do regularly.

No serious side effects of the chemo yet. This round seems to be going better than the last one so far (knock on wood!).

Ethan

Today was a good day!

A little bit of a stomachache, but otherwise no fatigue or other side effects yet (knock on wood!).

My mom, her friend and my former English teacher Michele Lettiere (who is visiting from Maine), and I hiked up to and around Fragrance Lake in Larrabee State Park. Over 4 miles round-trip and included a nice view of Chuckanut Bay and the San Juan Islands. Beautiful sunny warm afternoon.

After another nice dinner prepared by my mom and Michele, I played "Settlers of Catan" (board game) at friends John and Julie's house, with John, Julie, and son Callum. Good fun time.

Ethan

Back from Chemo

We just got back from chemo. We decided to continue using all the drugs for now. We will see what the side effects are like this round, and then re-assess.

My CEA number (a blood marker of cancer) has decreased to 1.6 now, which is in the normal range (0 to 2.5 or 3), so that's good.

I feel OK right now, but any side effects often kick in a couple days later.

cheers,

Ethan

First Post

Grace, my mom, and I met with my oncologist Patrick Nestor today. We discussed the results of my PET scan from last Wednesday. Dr. Nestor showed us on the computer screen the images from my first PET scan in early June versus this one, two months and four rounds of chemotherapy later. The difference was dramatic. In the first scan, it looked like my entire skeleton was glowing from all the areas where the cancer had spread, plus the colon where the cancer originated. In the new scan, you couldn't see any cancer activity anywhere, although apparently the radiologist who read the scan and wrote the accompanying report could still see some in a few places with the superior resolution of their equipment. Regardless, Dr. Nestor said that it was really remarkable improvement, beyond what he would have expected. My CEA number (a measure of cancer activity taken from blood) has also dropped from over 100 in early June to 2.7 on July 26 (normal range is 0 to 2.5 or 3). They drew blood again today so I should get an updated CEA number tomorrow.

We then discussed treatment options. Because there has been such improvement, we could stop using some of the chemotherapy drugs. The advantage of doing that would be that I might feel better, as most of the chemo drugs have possible yucky side effects. The disadvantage of doing that would be that it might allow the cancer to start spreading again sooner, although the research on that is unclear.

Side note: my main side effect during this last round of chemo was fatigue for about a week. Fatigue may not sound that bad, but this isn't just a little sleepy. This is like your body has turned to lead and there is a giant weight pressing down on you such that you can barely move, think, talk, or, ironically, sleep. Even so, I was able to be somewhat active every day, but sometimes only with great effort. Given the wide range of possible yucky side effects, however, I suppose I should count my blessings.

Anyway, I texted Sam Whiting, the oncologist at Seattle Cancer Care Alliance who I have seen for second opinion consultations and who is an expert in my type of cancer (Dr. Nestor is more of a generalist). Because Dr. Whiting is a saint and the living embodiment of all that is good, he called me back within minutes and took as long as I wanted to discuss treatment options (time that he's probably not going to be able to bill anyone for). Dr. Whiting had some suggestions, which I relayed to one of Dr. Nestor's nurses, who will relay them to Dr. Nestor. So I'm not sure what we're going to do tomorrow morning when I go in for chemo, but we're leaning toward continuing to use most or all of the drugs for now.

I came home and took a walk down by the bay with my friend Tami, who is visiting from Berkeley (her first time ever away from her two young daughters - we are honored!). Then my mom prepared a nice dinner for all of us. Then Tami put Miles to bed while Grace and I went to a movie ("The Kids Are All Right"). Then we said our goodbyes to Tami, who leaves early tomorrow morning.

cheers,

Ethan