Cancer Saga Update #3
|Good News - Bad
News I guess that is how it is going to be...
Not unlike life itself
|Markers - how is it going?
- So far I've had 5
chemo cycles and 2 radiation treatments. At the end of 3 cycles
the doctors try to assess 'progress'. The did a CAT scan
and looked at blood markers.
**disclaimer - image not really my lung but similar.
|Skeletal problems: One of
my big problems had been that tumors attacked the femurs (thigh
bones). The doctors were afraid that these might be so weak that
they would spontaneously fracture. They put me on crutches to
off any weight.
They radiated my femurs and the part of the spine that had tumor activity. As a result some new bone material has begun to fill in and they believe I can begin to wean myself from the crutches. The restriction to crutches was a major contributor to feeling somewhat hopeless. There is still some spine problem but if it can be rsolved then I will be able to move around normally. Marathon here I come (not really).
|Driving: The doctors had
restricted me from driving. They feared that even the pressure of
the accelerator and a sudden application
of the brake could fracture the leg via the weakened femur. As a
result of the bone improvement I can drive. Driving really
important contributor to independence. I guess I didn't escape
that American male teenage upbringing. Ironically most of my
driving is to doctors' appointments.
|Chemo - The first cycle was
really rough. They gave me miracle nausea medicine so now it is
going better. Some people's systems have big problems finding a
chemo portocol they can take. So far so good. The chemo
drugs go throughout the body looking for rapidly developing cells such
as cancer cells and destroy them. Really is a tribute to medical
research. Sometimes the chemo makes mistakes like such as killing
lining cells of the stomach and hair cells - because they share the
profile of rapid development. These mistakes cause the
dreaded side effects.
Portrait of Alimta -one of the chemo drugs
Friends have suggested many non-mainstream ways of dealing with
cancer and many books. I found one that was especially
useful - Anti Cancer by David
Servan-Schreiber. He was a medical researcher who then got
cancer. His uniqueness is that he documents the alternative
approaches with many citations to respectable studies (rarely enough to
add up to the point that the official societies will accept them
yet.) Many books just assert
their favorite cures. He explores four areas: Diet;
Exercise, Stress Reduction, and
Connectedness. I am working on all of these and often it
feels very hopeful.
Some of the foods believed to fight cancer
Precautionary Warning #1: His research review is very provocative
and troubling for what it suggests about an impending cancer epidemic
in our culture. Japanese and Indian statistics indicate much less
cancer at the early ages it is showing up in US an European
society. The appeal to different genetics does not work because
Japanese and Indians who move to the US begin to show the same
epidemiology as caucasians after living in the US. He attributes
much to diet.
|Life goes on: I
had been working for the last 3 years on a book about artists working
with experimental science and technology. It is a large format,
highly illustrated book aimed to introduce this kind of art to the
general public. In the midst of the sickness there is this
seed of normal life. It is going to come out to bookstores in
Art+Science Now (Thames & Hudson)
a. A prediction of the probable course and outcome of a disease.
b. The likelihood of recovery from a disease.
|Optimism?: The cancer
model I always worked on is based mostly on breast cancer. People
find it, they get treatment, and for many people it moves from slow to stop to reverse to eradicate to cure. If they are
lucky they live on to die "happily" from other causes. Many
people seem to be long time survivors. My mother survived 30
years after her breast cancer even before current research.
The doctors said I was in a "good" group - non-smoker, good response to chemo, healthy, young?, non-compromised systems, etc. We would keep using the chemo that seems to work but then could shift to others if it quit being so apparently successful. They seemed so upbeat about the various things that could be implemented. I assumed this process of fighting cancer could go on indefinitely......
|The Folly of unbridled
optimism: But then a ....
The doctor said that
my kind of cancer was not 'cured'. The protocols of chemotherapy
were not yet that advanced. Chemotherapy could only attack rapidly
developing cancer cells. But there were also quiet, lurking
cancer stem cells that were not affected. They could emerge later
with a vengeance. They could mutate so that the chemotherapy no
longer worked and that was how this cancer did its thing and
overwhelmed the body. They
used words like 'longevity' 'quality of life' - not cure.
Image derived from Goya -
Saturn Devouring His Children
|Probability curves: The
medical research community assembles statistics for how long patients
with various kinds of cancer can expect to survive. The curve for
my kind of stage 4 lung cancer is not pretty. Since it is a
statistical summary, it is impossible to specify the fate of any
particular person. Many will die within the first few years; some
beyond 10+ years. My good response to chemo has moved me out a
bit on the curve. New research in the next few years could
radically stretch the curve. But it is impossible to know what I
|Deep Vein Thrombosis (DVT)
- Cancer has another little hidden delight in store for people.
It greatly increases the risk of blood clots. These are the clots
that are dangerous if they break loose - causing strokes and heart
attacks. They discovered that I had 3 of these. There are
powerful anticoagulants such as coumadin which greatly reduce the risk,
but I am going to be on that medicine for life.
It also constrains the time I have left in a significant way. Airplane travel also stimulates the growth of these clots. Typically I am invited to give international talks when one of my books comes out. I was looking forward to this possibility but it is unclear how much travel I will be able to do. How ironic that clotting, this marvel of the body's defense system, could be turned against itself.
Precautionary Warning #2: Deep Vein Thrombosis (DVT) is not just
only for cancer people. There is some evidence that air
travel causes 20% of flyers to develop incipient clots but young
healthy bodies dsissolve them and there are no
consequences. Others think the problem may get worse
because of the restrictions on moving around.
Mortality confronts us with questions.
|Urgency: How long is
there? How does one make life decisions? If there were only
one year vs 5 or 10, one might make different choices. Cancer
demands one live on this edge.
When my father was dying of Parkinsons and Altzheimers in the nursing home, I was struck with my mother's response. She would go each day to take care of him and minister to his health. She would make sure he didn't eat unhealthily - for example, fatty foods. He loved donuts - she poignantly wouldn't let him eat the extra donuts because they were bad for you...
|The 'gift' of the fire:
Near July 4 1992 some kids were throwing firecrackers between the
houses on Coleridge Street where we used to live. (In San Francisco
houses are often built touching each other). A huge fire resulted
burning down the two houses next to us and destroying one section of
our house. My daughter Sophia was 6 months old and slept in one
of the rooms that was destroyed. Luckily Cathy had taken her to
visit friends. I was in the back room obliviously working on an
art piece - I thought someone was having a big barbeque. I was
surprized when the firemen threw me out.
No one was hurt and our house was resurrectable. I realized how lucky we were. It made me realize how precious life was. I resolved to live in accordance with the philsopher's goal of living each day to the fullest, as though it were the last. I treasured people and told them I loved them. I tried to make each decision in a deep way. The intensity began to fade after 3 days. I realized that I (and maybe humans in general) were not wired to live with this constant fervor. But here I am again challenged to consider this approach.
|Decisions about what is
important? How should one spend the time one has? None of us have
unlimited time. Even before I knew I had cancer I was thinking
should spend the years after retirement age. Should I continue
with art, teaching, writing? Should I focus on a new
career? go back to school? work with the community?
Take the time to do things neglected during the rush of life - reading,
travel, family? I have been asking everyone how they address
these questions. Because of cancer, this is no longer
an abstract, leisurely consideration.
(What should be the mix of the following options?)
Precautionary Warning #3: Decisions about how to spend time in
'retirement age' is not just
only for cancer people. As baby boomers approach these years,
there is a looming personal and social crisis. What should people
do with these years that don't demand normal work life?
oneself to gentle
battle with cancer: Researchers such as Servan-Schreiber
(described above) claim one can change one's position on the survival
curve. For example, one can abandon the high sugar, processed, refined
foods that feed tumors and inflame body systems. One can reduce
the stress in one's life and abandon striving that
suppress the body's immune system and the treadmill activities of
previous life. One can attend to
transcendental processes. His book is full of examples where
these actions resulted in people living beyond their prognoses.
But this change of focus can call for a break with the past.
| Art and
have been blessed to pursue a career that I loved. I have been
able to invent new kinds of science-inspired art and show it around the
world. I have been able to write books that many readers found
inspiring. Why not continue with these
Typically, I monitor the research labs for new developments that are culturally and technologically provocative. Then I create art installations that explore their implications. In the last year I have focused on 'energy harvesting.' This sublime technology seeks to extract energy from the processes of life - human activities such as walking and dancing; biological processes such as heartbeats, the flow of sap in trees, bacteria in the earth; and physical events such as raindrops.
There are complications: Developing this kind of art work can be stressful and require sustained, concentrated focus. It is work that takes time to unfold and requires a faith in the future. Part of its joy is stimulating people to envision and work on things that don't yet exist. It requires a faith in the future.
Energy Harvesting Projects
1. Studio RooseGarde - Dance Floor lights and sound powered by dancers
2. Project to extract power from the flow of sap in the xylem in tree turnks
There is another complexity. Art is funny - it
has a dual identity. In part I and other artists work to satisfy
ourselves regardless of what other people think. But it can have
another side - artists also work to electrify audiences, win
recognition, and change the culture. Ambition has plagued me much
of my professional life. I used to win prizes in international
competitions - I haven't won one in 10 years. Part of me still
seeks this goal. Is pursuing this really the best way to
spend limited time. Does it recognize my changed circumstances?
I went to Antioch college as an undergraduate. Horace Mann established the place to revolutionize higher education - for example, being the first to admit women and blacks. There is a Mann monument on campus with the saying "Be afraid to die until you have won some victory for mankind." I was always obsessed with measuring myself against this elusive standard. Ironically, while also at Antioch I read the Hindu holy book Bhagavada Gita. There is a scene where Krishna tells Arjuna that englightenment means taking action but being liberated from entanglement with its results. That might be a better goal.
He who is disciplined in Yoga, having abandoned the fruit of action, attains steady peace.
Antioch College. Some say it looks like Hogwarts or Fantasyland.
Teaching is very different than the art and
writing. The feedback is sometimes immediate. It is such a
joy to see the light go on in a student's eye. It is awe
inspiring to see a student who enters the semester feeling like he or
knows nothing and then leaves at the end feeling enormously competent
and creating exquisite unprecedented art projects. I am drawn
to teaching as one possible activity to continue to pursue.
One week after I learned about the cancer, I got an unsolicited email from a former student from 20 years ago. (Thanks to the Internet I periodically get these). He thanked me for his time in our program and said it had transformed his life. What an unexpected gift. It was a great antidote to the medical information.
My colleague Paula Levine and I have been blessed with the opportunity to create a curriculum of our own design. We direct the CIA (Conceptual Information Arts) at the SFSU Art Department - we joke we are the other cia. It teaches students contemporary computer art skills but also prepares them to understand and work with emerging research in science and technology. We believe that artists can be critical in increasing general literacy and involvement with the scientific research that will shape the future. Why not continue with this?
There are complications. The California Dream is burning. California had a visionary education plan that promoted inexpensive public higher education. It resulted in great scientfic, cultural, and economic break throughs that lead the world. Now it is under assault. The universities are cut severely. Faculty and students are demoralized. Most discussions focus on how to cut, limit, and slash.... Colleagues warn it is nearly impossible to focus on the teaching and that I might want to reconsider about coming back.
Disclaimer - I could not find an image of me and my students, but this is how it works on a good day.
Works: There is so much need in the world. Many old people
are alone, sick, uncared for - they deserve better. K-12
education is crying out for attention - those kids are the
future. They deserve better. Is there something I could do?
| Open ended
explorations: My life has been so earnest and focused on
accomplishing goals. For example, I have rarely taken the time to
read fiction since I was so busy keeping up with science and art.
I limited the time given to idle daydreams. Maybe it is time to
relax, to flow, to open up to the unexpected? Who
knows? Friends say I earned that.
|Compartmentalism: The mind
has wonderful defenses. On the days I feel good, I temporarily
forget I have cancer. I toot around town doing much as I used to
before the big C. It is not constantly in consciousness. The fact
that cancer so far has been gentle with me in not attacking other
systems makes this possible.
But then I suddenly remember. This is not just a cold. It is a
lethal, deadly disease that makes the future uncertain. And then
the mysteries well up of how it happened - how and why did I get
cancer? Where is this heading?