A few good days

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

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

Ethan

WWU men's golf

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

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

Ethan

Feeling better today

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

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

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

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

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

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

Ethan

Three new posts from Ethan below

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

Some thoughts on death and dying

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

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

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

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

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

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

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

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

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

Ethan

Ode to my caregivers

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

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

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

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

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

Ethan

Update from Ethan

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

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

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

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

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

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

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

I am so tired.

Tired of being tired.

Ethan