I have started the cycles of chemotherapy. Like everyone, I had heard of chemotherapy, but I did not quite realize some of the subtleties. My oncoloogists are all upbeat about this. They believe it can be quite effective in slowing, stopping, or eradicating my kind of cancer. There are no guarantees. It works for some people and not for others. Its effectivness can go down over time. We will have to see....
I would rather not have to claim my money back
My chemotherapy comes in 3 week cycles. You go and they intravenously administer heavy duty drugs during a 2 hour drip. These drugs go looking for quickly dividing cells such as cancer cells. Unfortunately it also attacks other normal quick dividing cells such as stomach lining, hair folicles, etc. This causes many of the side effects. They give you lots of drugs that try to counter the side effects. The chemotherapy drugs are quite expensive - eg $18,000 a shot. I am getting Alimta, Carboplaten, Zometa. It is pretty dangerous stuff and can burn skin etc if it gets in the wrong place.
During the first week of each cycle things have been pretty tough - extreme nausea, fatigue, general misery, some despair. Then they leave you alone for 2 more weeks. Generally I feel more normal during the second and third weeks. They say it is to give the immune system time to recover. Then they they hit you again with the next drip. I have had 3 cycles.
It feels somewhat like the arcade game 'Whack a mole'. As soon as the mole feels good enough to pop up, it gets whacked. It is a strangely engaging game although the animal cruelty people think it is abhorent.
Not quite normal. If you talk to me during week 2 and 3 I can seem lucid and you wouldn't know anything is different. But something is not quite right, a certain cloudiness. I can't concentrate on interesting things for very long. There are lots of anecdotes on the web - people call it 'chemobrain'. (eg forgetfulness, can't remember details, slowness, lack of multi-tasking, not remembering commitments.....)
Also I think there is something more subtle. Most of my art and writing projects assume that they will unfold in the future. With cancer that future is uncertain so it may be difficult to invest in the same way as the past.
|Results? Flying half blind
At the end of three cycles they will decide whether to keep using the same drugs or some new delights. With some kind of cancers such as breast cancer, you can measure the size of the tumor. If it gets smaller you are having an effect.
With my cancer that has spread throughout the bones there is no easy way to measure effectiveness. There are tumor activity blood tests but they are somewhat unreliable. They keep doing chemotherapy anyway based on faith that it often has a good effect. They will do a new cat-scan that might show some results.
It is interesting that they must proceed without the determinist data that Western medicine searches for.
My main quality of life problems have been bone pain and weakness. The cancer attacked my femurs (thigh bone). They are weakened and the doctors are afraid they might spontaneously fracture. I am required to use crutches to reduce weight bearing Also, I can't drive because the right leg is needed for accelerator and brake control.
Also the cancer attacked several of my ribs and my lower back. It fractured one of my vertebrae. I lost 1.5 inches in my height. It makes it very difficult to move. Generally the pain meds keep it under control but a big laugh or a sneeze can cause pain. Cancer may have also moved into other areas of the skeletal system. Not a pretty picture.
I had never realized how much we take the skeletal system for granted as a basic scaffold underlying life.
Steve contemplating the skeletal system.
Originally, the doctors had considered hip replacement surgery as a way to take care of the weakened femur. A titanium rod would be placed in the femur. There were many complicatons of trying to do that in the midst of chemotherapy. Some of the doctors were not happy with that solution.
Next doctors suggested I get radiation treatment for the damaged bones instead. If it works like it is supposed to, it will kill the cancer cells, relieve the pain, and after a while, new tissue (scar tissue) will be generated. Perhaps the femur will become strong enough for everyday life, although they tell me I will never play football or do karate again.
|I actually got the first
treatment on 11/30. They irradiated my femurs. It was a
pretty impressive process. 7
people using lasers and x-rays to aim the gamma ray gun. The
marked up my body trying to be careful that just the tumor got the
With radiation treatments there are some options. Often they 'fractionate' the dose - spread it out over 10 days so that each day you get 1/10 the dose. Other times they give you the whole dose at one time. They decided to do that with me. Next they plan to radiate the spine - that will require the fractionation over 5 days.
At the end everyone runs out of the space into a lead-shielded control room. Pretty scary. The giant multi-million dollar robotic machine rotates around, zapping me when its program says the focus is correct. It did have some redeeming features. The techs has put motorcycle and Winny the Pooh stickers all over it. They also named it "Graditude".
I have to admit - the machine they used on me was much more modern, but the antique image conveys the spirit.
Medicine: There is great debate about the relative
powers of Western and alternative medicine. Advocates believe
that the mind can have much effect even at the cellular level where
cancer operates. Some examples include meditation,
diet, guided visualization, deep breathing, mind clearing,
These are grand traditions with 1000's of years of history. Scientifically controlled studies have shown the ability of these techniques to control pain, moderate blood pressure, increase immune cell production, etc. I suspect the next decades will help to clarify how these traditions can be integrated with Western medicine.
|Deep Breathing: I
have been working with cd-based sound programs put together by a
woman named Belleruth Naperstat.
They are pretty interesting. Her voice is amazing - strong and
reassuring. They start with deep breathing. You are
instructed to cyclically breathe deep into the abdomen and eventually
to send the breath into parts of the body that are painful or otherwise
problematic. Then the exhale helps to reduce the problem.
The moment between the last exhale and the next inhale is a moment
where the mind can be specially clear. It also uses meditation
techniques where one accepts wandering thoughts but then dismisses
them. The link gives a sample video of her approach
|Guided Visualization: She
also uses guided visualization. Practitioners believe the
imagination is a potent healer and a source of communication
between the conscious and subconscious forces of the body. I
think it is especially potent for artists. She leads the listener
to visualize scenarios which make palpable body processes.
Especially powerful for me was the notion of the immune cells as
legions of gentle warriors floating through the blood stream looking
for errant cancer cells. She also uses David and Goliath imagery
in which David is a t-cell battling much bigger cancer cells.
Bet on the slingshot
|Waiting Room of the Fates
|Mystery: Who gets
cancer? Of those who do, who survives? One of the most
striking aspects of all this is the mystery of it all. Here we
are in the midst of advanced techno-scientific culture. Except
for those who tempt cancer with bad actions such as smoking all their
life, cancer is unpredictable. There is no rhyme or reason.
It is quite humbling. The rational mind is quite feeble and
unprepared to deal with this. Sometimes I can embrace the mystery
- other times it causes me great sadness.
I searched for an image of the fates. Most of them show delicate women in classical garb genteely making these momentous decisions. Seemed wrong to me. William Blake created a much grittier version that seemed more accurate.