An Embarrassment of Riches

The first thing you notice when you become a cancer patient is the way so many people rally to your side. As I said last time, it is touching beyond words to know that so many people care enough about you to respond and express their love and support.

The second thing you notice is that you suddenly find yourself positioned in the middle of this great big web of connections. Many people care so much that they write or call to offer you the best information they have to help you on your quest to become whole again: contact info for people who have survived cancer, people who do healing, people who are good doctors, people who organize prayer chains, people who......

You become inundated with an embarrassment of riches when it comes to trying to figure out what to do next. Which people need to get called right away? Which people can get called later? Which people wind up being forgotten, in the mad rush to locate information and help that may be critical to your care? Which people would you rather not talk to, if truth be known?

One of the most problematic forms of assistance I've been offered (by a number of people) is assistance in seeing how the medical establishment is basically a greedy, money-making machine that doesn't really care so much about saving lives as it does about profits. We know this, say my informants, because if the medical establishment really did believe in saving lives, they would adopt Protocol Z for curing cancer or Product Q that eradicates cancer even in people who have been sent home to die. Instead, the medical establishment subjects patients to needless procedures, needless suffering, and possibly death as a result of the toxicity of their treatments.

I've spent this past week being pretty demanding of my health care team -- wanting them to provide me with information about the usefulness and necessity of what they are going to be doing to me in the name of trying to return me to health. And let's face it, the treatments are pretty brutal. They have serious, serious side-effects. But the medical establishment can also show some statistical evidence that these treatments work at least a certain percentage of the time.

In the name of fairness, I've had to make the same demands of all of these alternative treatments. Unfortunately, there is not as much solid evidence for many of them. There can be plenty of annecdotal evidence. But there is a real dearth of solid evidence.

Thinking that perhaps I was just not accessing the best evidence because I didn't know where to look, I decided to consult with some "alternative-minded" folks. One was a chiropractor in Virginia who works with an MD who practices complementary/alternative medicine in his practice. One was a psychologist who works with a well-known and respected cancer support community in this area -- one that supports the use of alternative modalities of treatment if cancer patients wish to do so. And the last was a person with a master's degree in nutrition who helps cancer patients formulate nutritionally oriented adjunctive treatment plans -- a guy who talks in terms of references to what clinical studies or research show about the use of those nutritional factors.

I asked all of these people if they knew anyone who had ever used a 100% alternative approach to treating their own cancers and been completely successful. The nutritionist said he'd seen three women attempt to do this, without success. The chiropractor said yes, but not in my kind of cancer. The psychologist said only one person out of three that she has known who have tried an all-natural, non-traditional approach is still alive today. (Note she did not say "cancer free" -- only "alive.")

As you can imagine, weighing these issues was very time consuming and intellectually challenging. But it was not just the intellectual challenge that marked this week for me -- it was the emotional one. And the whole question of which route I should choose to try to cure my cancer was made exponentially harder because of it.

The traumatic stress from my lengthy hospitalization 50 years ago that I mentioned in my last update surfaced big-time this week. Big time. It overlaid the normal and natural fear that anyone diagnosed with late-stage cancer might feel, with a decades-old blanket of terror and anger directed at -- no surprises -- the medical establishment. Though in my adult mind I knew that my health care team was not planning to deliberately and sadistically hurt me and was only planning to try to help, my heart was a very wounded child's heart again, and it would not be denied.

Intellectual doubts about the wisdom of subjecting my already-ill body to the rigors of traditional cancer treatment -- all in the name of returning me to health. Intellectual doubts about the wisdom of relying on alternative therapies that lack much (or any) research and clinical evidence for their effectiveness. The most profound fear imaginable at what I was contemplating putting myself through if I moved ahead with traditional treatment--knowing that it might not work and I might die and I would be sacrificing my last "healthy" months or years on earth to the ravages of traditional cancer treatment. The most profund fear imaginable that if I did anything else, I would die, too. An anguished realization that while my short-term odds are not that good, comparatively speaking, my long-term survival odds are even worse. The medical lit I read indicates to me that 8 years after treatment, only 20% of people with my kind of cancer are still alive (not necessarily cancer free; just still alive). A raging, crying need for certainty about what was the "right" thing to do.

On Monday night, I had a dream. I was in a dark and dismal post-apocalyptic universe where the life force that sustains all was being slowly snuffed out. Those of us who had survived the apocalypse had to scavenge for what life force we could find, and roving gangs of thugs would periodically come along and forcibly take it from us, leaving us with nothing. We were desperate to keep what life force we had and hide from the thugs.

I woke up depressed and terrified. The message was clear. The "life force" of my universe is being snuffed out by my cancer; roving gangs of thugs that keep coming in and taking what little I have left -- those were my medical team and the treatments they are proposing.

It was not a good week. I couldn't sleep. My appetite was radically diminished. I could hardly think. Fear and terror marked my every waking moment. I knew that I needed to get to a better psychological place if I am to have a chance at success in my treatment...but I couldn't find that place, no matter how hard I tried. Over and over, my child's heart cried out in terror and anger at those who, the way she saw it, had hurt her in the past and were preparing to hurt her now, again.

I wanted a cure. I wanted it to be sure. And I wanted it to be "healthy" instead of expensive and painful. And I couldn't find anyplace in any of the options in front of me where all of those things came together.

So I went to see the hospital psychiatrist, who listened to me very kindly, said a number of supportive things, and then told me I needed to cut it out because I was alienating the people who were trying hard to help me. And I knew he was right.

Fifty years ago I went into the hospital and the doctors didn't expect me to come out alive. But I did. Whatever methods they used to treat me, however hurtful and sadistic and barbaric they seemed to my 5-year-old self, they did work. And I have enjoyed 50 years of relatively good health as a result. Today, I have at least a 30-40% chance of being cancer free at the end of my treatment. Those are considerably better odds than I had 50 years ago.

I went home and wrote down what I would say to my 5-year-old self, if I could go back now and comfort her as she was alone and afraid in that hospital for all those weeks. I would let her cry, let her rage, let her tantrum, but, I said, I would never leave her. She has to be in that hospital to get well, and it is not always fun and sometimes it hurts and sometimes it's scary...but she is not alone. I will be there, no matter what she does, no matter how she behaves. I will not leave her. I'm right there.

After writing that letter to my younger self, I visited the nutritionist I mentioned above. He provided me with all kinds of information about how I could augment my healthy body, protect against some of the ravages of chemo and radiation treatments, and support the actions of those treatments through a careful diet and nutrition plan.

Treatment -- any treatment -- is a matter of weighing the known, provable risks and the known, provable benefits. For me, traditional cancer treatment has the weight of evidence behind it for efficacy. But there are significant risks, too, so I will manage those risks as best I can through an active program of nutritional support.

Friday evening I formally told my treatment team that I'm ready to move forward with treatment. That night, I had another dream.

I was in a forest that I'd visited once before. This visit was a re-check. It was a well-tended, groomed forest. But instead of everything being brown and green and earth-tones, everything was a kaleidoscope of vibrant rainbow colors -- a dynamic melange of bold and beautiful, beautiful energies. There were kaleidoscopic ducks swimming on kaleidoscopic ponds, and kaleidoscopic birds flying in the canopy of the kaleidoscopic trees. It was simply amazing.

But then, suddenly, I did some innocent thing--like picking up a stick off the ground and then tossing it absent-mindedly into the bushes--and everything began to fall apart. To my shock and dismay, whole rows of trees shattered like stained glass, one after another after another, forming piles of kaleidoscopic rubble on the ground. And then the biggest, most beautiful tree in the forest also cracked into a million fragments and became rubble. I just stood there, astounded.

And then, I woke up. Oddly enough, I woke up feeling good about this beautiful place I'd been, though very sorry to see it crumble and feeling a bit guilty for unknowingly causing it to happen. It quickly became apparent to me that the two visits to the forest were probably my life-threatening medical crisis of 50 years ago and the medical crisis I am facing today. The kaleidoscopic colors everywhere represent my "life force" or the energy that makes me, me, which is represented in some metaphysical systems in terms of the same primary colors (in the chakras) that made up the kaleidoscope. The big and beautiful kaleidoscopic tree is the proverbial tree of life -- the wellspring of all life and energy.

Though some innocent action on my part has caused my life force (tree of life) to crash, leaving a pile of rubble in its place, the essential energies are still there. After all, even the piles of rubble were composed of the same kaleidoscope of colors. I did not emerge from this dream anxious or depressed or guilty. I emerged amazed at how beautiful it all was.

As a friend has pointed out to me, this dream does not seem to suggest the snuffing out of my life force, but rather its collapse and need to be re-constructed into a new forest.

Who knew that my first battle with cancer was going to take place between my ears and in my heart?!!

Brenda
In search of mimsy borogoves....