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It is strange, and a little scary, how quickly my physical, mental, and emotional condition can change. My main physical variables are fatigue and pain, and my emotional state tends to follow them. Last weekend the pain was low but fatigue was high. I spent most of the time sleeping, even though two of my best friends were visiting from out of town and I desperately wanted to spend time with them. This fatigue was different from the chemo fatigue I have felt before. With the chemo fatigue, I felt like lying down, but I usually couldn't sleep. With this new fatigue, I felt like lying down, but I usually did fall asleep. I didn't feel like eating, and I lost some weight. I could feel myself getting weaker. I felt like my body was shutting down. I felt like I was close to death. And, truth be told, I was kind of looking forward to dying. I was tired of the constant struggle, tired of my life being dominated by my medical condition, and tired of feeling sick all the time. Try to imagine feeling sick every single day for a year - sometimes more, sometimes less, but always sick, never well, never waking up and feeling like getting out of bed. There is no way to know what that feels like other than experiencing it. That's what I didn't grasp when I was initially diagnosed. They tell you that they can keep you alive for an average, in my case, of two years, but they don't tell you that you may feel like crap most of that time. When you understand that, it changes your thinking.
Tuesday was an interesting day. I taught my class at the university in the morning, and then my partner Grace drove us down to Seattle for two different medical appointments with very different purposes. The first appointment was at the University of Washington Medical Center, where I received a radiopharmaceutical injection intended to decrease bone pain for several months, although it often increases bone pain for a few days after the injection. Unfortunately, although I had specifically requested a drug called samarium, the UW Medical Center, in their infinite wisdom, decided to give me a different drug called strontium instead, and didn't mention that until after the injection, when it was too late to do anything about it. Strontium and samarium have similar efficacy, but samarium is supposed to harm blood cell production less. Oh well. I felt like just another cog in the medical machine.
The second appointment was at the Seattle Cancer Care Alliance, where I completed the process of getting and filling a prescription for a lethal dose of medication under the provisions of Washington's Death with Dignity Act (http://www.doh.wa.gov/dwda/). I feel very lucky to live in one of the only two states that have passed such legislation (Oregon's Death with Dignity Act passed in 1994 and Washington's in 2008). There are many safeguards on the use of the Act, and I respect those who choose not to participate, but I respect even more those who enable terminally ill people, such as me, to maintain some dignity and control at the end of our lives. In that regard, the organization Compassion & Choices is an invaluable resource (http://www.compassionwa.org/). So I have the medication now. It is safely locked up. I have not decided if or when I will use it, but it gives me great relief to know that I have some control over my dying process. I do not think of using the medication as suicide, and I don't think others should either. It would be part of a dying process that has already begun, not of my choice. It would be done in consultation with my family. It would be done to spare myself and my loved ones unnecessary suffering. I think it is important to talk about this because I think there is still some stigma associated with choosing to end one's life, even under these circumstances. I think open discussion is necessary to overcome this stigma, and avoid the unnecessary suffering that can result.
My bone pain increased dramatically after the injection, as expected, but my fatigue decreased and my emotional state actually improved. As I've said before, and I will keep saying because I know some people around me still don't believe it, the fatigue makes me feel worse than the pain does. The pain hurts physically, but not as much mentally and emotionally. I feel like it scratches the surface of my psyche, but doesn't penetrate it. The fatigue doesn't hurt physically, but the mental and emotional toll is much higher. When the fatigue is at its worst, I can't focus on anything or enjoy anything. I'm too tired even to enjoy being around my kids, normally my greatest sources of joy. I'm alive, but not really. I feel like I'm just taking up space, and that makes me feel bad.
That said, the pain is no picnic either. As it increased, I had to increase my use of painkillers, which make me constipated and mentally loopy. I had trouble sleeping, despite taking so many painkillers that I was literally babbling out loud. I don't know what I was saying, but I'm sure it didn't make much sense.
This was the situation as my next class meeting approached on Thursday morning. I was worried that I would not be able to monitor whether I was making sense in class. However, returning to teaching this quarter has, so far, worked just as I hoped. It gives me some schedule and sense of purpose. It makes me get up and get going and gets my mind off my problems. Pride (wanting to do a good job, not wanting to look foolish) and adrenaline have carried me through the classes so far, even when I felt bad going in. On Thursday I felt better by the end of class and the pain had largely receded. Hence I entered the third and best part of my confusing week (from high fatigue/low pain to low fatigue/high pain to low fatigue/low pain). I had lunch with my best friend Eric and then took a walk with him along Lake Whatcom. The sun came out and I mowed my yard. That evening I went out with friends and watched basketball on TV. Friday I worked most of the day in the office, taking a break at noon to play basketball. I played one game of half court and three games of full court. I wasn't running up and down the court, just jogging, but still, just two days after limping around in severe pain, I was out there. That's an example of how quickly my condition can change.
With these quick changes, my time horizon whipsaws around in ways that are confusing and challenging, for me and for others, particularly Grace. One day I might feel terrible and be preparing to die soon. The next day I might feel relatively OK and be making plans for months away. I haven't figured out how to handle this constant uncertainty. Is preparing to die soon overly pessimistic or responsible and realistic? Is making plans for months away appropriately optimistic or irresponsible and unrealistic?
I will say that I am happy with my decisions to resume working (as I already discussed), stop chemo, and enter hospice care. Traditional medical care treats illness as a battle. Living is winning; dying is losing. But I find this battle metaphor unhelpful in dealing with terminal illness like mine. Living is not winning if the quality of life is low. And I don't accept that dying is necessarily losing. I think it is possible to die well, and that the inevitable end does not have to be considered defeat. I much prefer the hospice care approach, with the focus on quality of life. I am not trying to get better or live longer. Those things would be nice, but they're not my goal. My goal is to feel as good as possible as long as possible.
One of the most helpful things I've read since I got sick is Victor Frankl's book "Man's Search for Meaning." Frankl was a psychiatrist who survived Nazi concentration camps in World War II. He experienced and observed suffering far, far greater than mine, but emerged with his humanity intact. He argues that people can endure immense suffering if they can find meaning in their experience. He acknowledges that it can be hard to find meaning in suffering when there is no hope of recovery or relief, but suggests that sometimes the meaning is simply in how one bears one's condition. We cannot always control our circumstances, but we can control our attitude toward them. We always have the choice to retain our humanity, and that final freedom cannot be taken from us.
