surviving cancer 101: lesson 6

29


There is a time for being ahead,
a time for being behind;
a time for being in motion,
a time for being at rest;
a time for being vigorous,
a time for being exhausted;
a time for being safe,
a time for being in danger.

The Master sees things as they are,
without trying to control them.
She lets them go their own way,
and resides at the center of the circle.


from the Tao de Ching by Lao-Tzu, Stephen Mitchell translation


6. know your options.


If "no" is your only option, open your ears and listen for others.

I was told 3 years ago, I had one "option", a pill that had little chance of working - other than to possibly control metastases to the brain. At the time, my cancer was like a teenager, running wild and this was the only option that my current oncologist had available to him.  We decided the time for us was to be in motion - the onus was on us to find out where our other options were. 

Our research led us to one of the premiere cancer research and treatment facilities in the world, M.D. Anderson. They had lots of options for me then, and still do. They may not ultimately be able to cure me but I am certain they will exhaust every possibility.  They have given me much more time than I would otherwise have had, they’ve given doctors, researchers, pharmaceutical companies, everyone more time to find the solution that will fix me and others.

Having options means not giving up. Not letting the crab grab all my energy and get stronger while I weaken.  A doctor who has options for me and is unwilling to ever say that's it, no more options, means that I can relax.  There is still time for being in motion, being at rest, being exhausted, and so on - they've given me that luxury.

I know I can't control the outcome, but I have found my peace in letting things take their course, knowing that when one treatment avenue closes, my doctor has more options available.  The windshield's big, rear view mirror small. 

surviving cancer 101: lesson 5

35

She who is centered in the Tao
can go where she wishes, without danger.
She perceives the universal harmony,
even amid great pain,
because she has found peace in her heart.

excerpted from the Tao te Ching, Stephen Mitchell translation

5.  Open your heart. 

Regardless of whether or not you're a believer, never ever turn down a prayer, a hug, an arm squeeze, a donut, any gesture of compassion, empathy, or love from anyone, including, and perhaps especially, perfect strangers.  

I’ve been bald twice and have otherwise looked pretty sick for 4-ish years (until a few months ago).  During this time, I've struck up conversations with countless strangers - at cancer centers, airports, the grocery store, wherever.  I've seen more good in people in the past 4 years than I have in the 43 that preceded it.  It might be because I've looked so vulnerable, and that does seem to bring out the best in a lot of people.  

An overwhelming number of people I've met want to add to me to their prayer list.  I'm not a church-goer, and probably don't have the same beliefs as many of these people, but this doesn't matter to me - or apparently to them - in the least.  I just say thank you, go for it.  I don’t care what religion anyone is - if someone wants to pray for me, send me good chi, hold a good thought, say a Hail Mary, whatever - I accept it all, and I'm grateful for it. I will take whatever people offer, whatever they can spare. 

Our visits to church are basically for weddings and funerals.  This summer, though, we were in France, on a canoeing trip, and I asked my husband, who could probably best be described as a fallen Catholic, to light a candle for me at Notre Dame.  Before you knew it, we were lighting candles at small churches all over France.  Lighting those candles gave me a sense that anything could happen - that it might work.  It was the same feeling that making the connections with strangers has given me - a feeling of being part of something much larger than myself, a feeling of grace.  

I believe that miracles can happen every day, and the more I open myself to that feeling, the better I feel.

surviving cancer 101: lesson 4

63

Act without doing;
work without effort.
Think of the small as large
and the few as many.
Confront the difficult
while it is still easy;
accomplish the great task
by a series of small acts.

excerpted from the Tao te Ching, Stephen Mitchell translation

4. the importance of structure

Try to find some small thing in your life you can do every day that makes sense. For me, it is crosswords. Puzzles provide structure and order to my universe, and are a way to feel challenged, and maybe have a laugh. Concentrating on them takes me away from the uncertainties that characterize my own life. 


Its nice to have a tiny little box of structure, which can be solved each and every day. They are as unlike my own life as can be - I do not control my disease, and the decisions that we've had to make have been difficult, and we, of course, can't know whether they have been, are, or will be the right ones. I just have to trust them. I cannot solve my disease, or even understand why I have it, but for some reason the act of solving a puzzle every day is comforting. 

surviving cancer 101: lesson 3

39

The Master views the parts with compassion,
because he understands the whole.
His constant practice is humility.
He doesn't glitter like a jewel
but lets himself be shaped by the Tao,
as rugged and common as stone.


excerpted from Tao Te Ching, Stephen Mitchell translation


3. the importance of amulets and talismans

Who can say how long talismans have been around protecting us? "Pliny was the first to record their use and register the term amulet, meaning "an object that protects a person from trouble"), a close cousin of the talisman which is essentially an object designed to bring good luck to and protect the owner." (Wikipedia). Pliny may have recorded their use but my guess is that humans have been carrying talismans for as long as humans have been running into trouble - since Day 1, in other words. Who knows what was the first thing to frighten us? When we decided things fell into good and evil camps? Did we first use our talismans to ward off carnivores, protect us from each other, prevent the loss of a child? 

I think amulets and talismans are universal - they're in all sorts of cultures - cultures where languages, religions, customs, have no common denominator, no common thread. I think its natural to have superstitions, to think that something can give you that extra edge. I never felt like I needed an edge until I got married, until I found something so precious the thought of losing it would take my breath away. My husband and I started collecting our talismans once we started dating. Our amulets are mostly rocks and shells that just have a lucky feel to them - a shape, a glint, something that makes them stand out. I carry a few of these with me whenever I go into the hospital or go to Houston for tests. They feel good in my hand. Sometimes when I really feel like I need some extra medicine, I'll bring a small ceramic dog we bought from a beggar in a restaurant in Mainz. I have other talismans - from my brother, my stepdaughter, my mom, close friends.

I like having them with me. They humble me and remind me that I'm not alone.

surviving cancer 101: lesson 2

80

People enjoy their food,
take pleasure in being with their families,
spend weekends working in their gardens,
delight in the doings of the neighborhood.
And even though the next country is so close
that people can hear its roosters crowing and its dogs barking,
they are content to die of old age
without ever having gone to see it.

excerpted from the Tao de Ching

2. the importance of fried chicken.

On days that I am recovering from chemo, my New Jersey husband cooks me fried chicken, fried chicken that is better than my mom's, who is a formidable southern cook.

I usually can't eat much of it that night, one piece and a few potatoes, some sliced tomatoes during summer will fill me up, but as my appetite returns, we will fight over the leftovers until they are gone. That chicken is delicious, partly because it IS delicious, but moreso because I'm touched that he wants to take the time to make it for me. Its such a sweet gesture - him in the kitchen nursing that fried chicken along the way he's had to nurse me along, the way he's there with me to read the MRI reports and CT scans because I can't. To research the details on the trials and drugs we're considering because it's difficult for me to assess objective clinical information. I'd rather not know the details, the hows and the whats. But I want him to know the hows and the whats, to tell me he thinks this is the one we should try, this looks good. Then I CAN empty my mind of expectations and wait to see what happens.

I think that fried chicken makes me think of all the things he's done for me during this time, stuff that would never have crossed our minds 5 years ago, me very independent, not needing much at all. Its a reminder of just how important home is, and the little things you take joy in. Like my wonder dog. And good books. And crossword puzzles. And fried chicken. And sliced tomatoes and the garden they came from.

surviving cancer 101: lesson 1

44

Be content with what you have;
rejoice in the way things are.
When you realize there is nothing lacking,
the whole world belongs to you.

excerpted from Tao de Ching

1. the importance of a wonder dog

Find a wonder dog and give her a belly rub every day - any sort of wonder pet will do. They can work miracles, taking your mind off yourself, and letting you experience life with someone whom you love, yet doesn't know that you have cancer. They are able to look at you and love you without that tinge of sorrow.

My wonder dog is a rescue dog, and having come through quite a lot herself, she has magical properties. Though she looks a bit soulful here, she has developed over time an extraordinary capacity for joy - greeting every day, every walk, as an opportunity for a pouncing, sniffing, tail wagging extravaganza. She also follows me everywhere, content to just watch me when we're not moving. She is the most loyal being I've ever known.

Finding her was complete and total serendipity. She is the embodiment of joy, and she rejoices daily with the way things are. As such, she is a reminder for me to rejoice every day - with the way things are.

Miracles happen every day. She is a continuous reminder of that.

naming cancer

1

The tao that can be told is not the eternal Tao
The name that can be named
is not the eternal Name.
The unnamable is the eternally real.
Naming is the origin
of all particular things.

excerpted from the Tao te Ching by Lao Tzu
S. Mitchell translation

the relationship between tao and cancer

the tao is universal, eternal, unnameable, the source of everything, a way of living. it is a philosophy of life, a system of principles, a way of acceptance. the philosophy is eternal.

cancer is universal, going strong, named, a way of dying. it is a disease, a malignant and invasive growth, which tends to recur when you try to get rid of it, a thing we have no cure for, no power over. our understanding of it advances.

reconciling the nameless with the named

A Greek physician, Galen, noted a similarity between crabs and tumors, which are often fed by swollen veins, and the Greek word for cancer karkinos was created. This word meant crab, cancer, and the constellation. Cancer was named, and we assumed that we could then wrest power from it, the enemy.

Cancer, to me, is not a foe, an enemy. It is part of the Tao, who gives birth to both good and evil. Cancer has as much right to be a part of the world as I do. The world is full of all sorts of life forms, including parasites, who earn their livings off of others.
My doctors have tried to excise it, to irradiate it, to starve it - shrink the swollen veins that supply it. Despite their best efforts, these techniques have not been wholly successful, but they have kept me alive. 

Looking at cancer as a thing, an endpoint, something that can be picked off, removed, thrown away, has not worked. The cancer has thrived, and me, I am fortunate to have survived.

We have recently learned that I have a defect, a genetic mutation, that is allowing my cancer to take advantage, to multiply, to grow at will. I am in a clinical trial, taking a new drug that is designed to fix this mutation, restore my body to its oneness, allow it to work properly. In this way the cancer is deprived of its swollen veins, and can no longer take what it needs, at will.

Cancer is not an endpoint. It is a living organism, like me, with its own energy. The crab is losing its energy, and I am gaining mine.

milestones

May 5, 2005

October 8, 2005

July 25, 2009

3 turning points, fulcrums around which my life now rotates.

ful⋅crum

1.	the support, or point of rest, on which a lever turns in moving a body.

May 5 - bildungsroman day

last day of innocence, first day of experience. "benign" surgery to remove "probably just fatty tissue" under my arm became radical lymphnode resection, 16 of 18 nodes with melanoma, my immune system trying its best to keep the cancer contained.

October 8 - anti bildungsroman day

last day of experience, first day of innocence. went to sleep stewing about the fact that I had Stage 4 cancer and a prognosis that was uncertain at best. Woke up free of worry, embracing the uncertainty, no more looking back. The windshield's big and the rear view mirror's small (thks Tom Daschle for the catchy phrase in 8/30 NYT Magazine ).

July 25 - Just Do It day

mental but no physical harmony with the world. not since the cancer found a home in my knee (early 2007). I fought my way through the world for 2 1/2 years, everything a struggle. In 2009, another clinical trial, new drugs - weight gain - more struggling. On July 25, I resolved to quit fighting, find my way back into the world's rhythm. Mission 125 was launched - my diet and exercise plan (eat less, bicycle more) to return me to a fitness level where I can be comfortable in my own skin.

Milestones

These 3 dates are now/will be annual milestones, marking progress in the way that birthdays and anniversaries do. They are fulcrums, put in place because my life is now defined a priori by cancer and uncertainty. I suppose I've been reborn - and celebrating these 3 extra birthdays will be a gift.

Cancer is not an opponent; it is part of the tao and therefore an accepted part of my life.