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Living While Dying: Learning to live in the face of cancer

By Ethan Remmel, Ph.D.

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.

Compassion & Choices of Washington – an affiliate of Compassion & Choices –
stewards, protects and upholds Washington’s Death with Dignity Act.
877.222.2816, [email protected]www.CompassionWA.org