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I HAD CANCER – Probably still do.

Diagnosis with cancer thrusts you suddenly into the darkest of rooms. Alone! But there are many others who have similar rooms and have found the sunlight. You meet them all over. We are pretty normal people once we recover from the shock and dismay. One I know said; “I took up running because I admired the loneliness and the suffering but eventually found that running is neither. You become friends with yourself and the wonderful things you think make you unaware of the suffering.” Another described the agony of climbing a steep roadway in San Francisco during early recovery from chemotherapy, slumping onto a bench and noticing the signs of spring on the trees nearby. I faced diagnosis five years ago with a serious and life threatening lymphoma. Prognosis was “five to seven years, but we can probably keep you alive much longer than that”. Wow – I forgot about the grandchild we are raising, I forgot about the world. My mind was blank. From out of the fog came the realization that my windows were long shuttered and I had no clue where my resources were stored. Today I have no symptoms or signs of lymphoma. I am just a few years older and a lot wiser. Rather than follow the course my oncologist had in mind, I redefined myself and learned to value my innermost resources. There has been no evidence of disease in three years. We now have two grandkids in our home – and both are adopted. What wonderful young people they will be; so full of energy and imagination, compassion and unspoiled humanity. How much we all enjoy the world around us! Are you friends with yourself, or are you too busy chasing business and competing with the whole world? Have you looked inside and out? Do you live sensibly? If you are told it’s a nice day, look out the window and check. If you have chosen not to have a window, then day is immaterial unless your supply lines are cut. Even then, you’ll be fine until your resources give way to night.

BEING A CANCER SURVIVOR ‘ Colin Perrott JUNE 2009

WHO IS NED? NED is the best friend any living person can have. When he is around, you are wrapped in good health; you have No Evidence of Disease. But we humans are a difficult lot, to say the least. We rely on our best friends but treat them complacently. We court others to find stimulation and reward. We expect the likes of Ned to be waiting patiently just where we discarded him. Think for a moment of those who are lauded for their physical beauty. Do they present outstanding examples by treating their bodies with absolute care? Sports champions; are they content to coax and manage their bodies to deliver what is a reasonable expectation? No! Do politicians remain responsive to the real needs of the individuals within their constituencies? Are preachers and mystics consistently humble, working alongside those they would lead to a better realization of the majesty of existence - or do they come to enjoy looking down frostily as they acquire the authority of presumed knowledge? Our mindsets like to clash with the imagery. The human mind does not live in the head. It reaches amazing and complex spaces unlimited by space or time. It has immense powers to create in its chosen image – and incalculable ability to destroy without favor. Though our minds are vehicles for us to fly unlimited above other natural species, they cause us to neglect the realities of our physical existence. Ned, like all of our other true friends, cannot stay around indefinitely unless we are consistently hospitable; unless we nurture the appropriate attitude. Ned leaves. Eventually we are brought to a halt. The choices are three:

1. Wade resolutely into the deepest levels of therapy, 2. Retreat away from the world into mystery and imagery, or 3. Think about the place where Ned liked to be - Try to recreate it.


MY PROJECT Up that ladder, meters tall, I climbed the daunting wall. Felt a breeze cross my face and tasted the stretch of space. But my foot missed a rung - and stark reality had come!

A four letter word cannot be nice, yet we each have to roll its dice. Away to jail for seeing the lure, to stay banished until cure! Enclosed by a wall we just hate, we endure our lonely wait.

Echoes ringing through my head repeat every word that was said! The noise continues to grow without end, unlikely to slow; until my ears embrace its pain. And then; every day is the same.

But letters in other sets of four can usher you to an outer door and repair the hurt where you fell imprisoned by your private hell. Flee that cold darkened room. Go draw with light, not doom.

Reset the odds of your inner race, painting magic across your face. Reach places new, far and wide where devils of fear cannot hide. Learn to share; to talk and hear. Lift your mind to erase the fear.

Don’t weep for absent cure but let hope run entirely pure. And look for life that is long. Sing the tune of a happy song. Show you care; help and be kind. Ride the wind and defy time.

MISSING NED

So here I am in the fog. The doc is talking about removing my spleen and all I can see are images like those drawn graphically by Geraldine Brooks in ‘Year of the Plague’. As the medieval medico gallops away from the town infested by plague, leeches tumbled from his pockets and fleas started to dance along the tail of his horse. So little was known then! Language and cultural obstinacy held Europe away from the dawning science explored by Muslim physicians. My immune system is severely depressed! Cut my spleen out? There will be nothing left to function…is this some time warp? “People survive a long time without a spleen.” Do they? What the hell are we talking about here, survival or having some quality of life? There is a huge difference, you know. I am a scientist after all – with an impressive career behind me. So let’s get serious. Discuss this with several bottles of wine. The fog gets heavier. People from the Company want advice – they cannot get by without me! The tubes of blood drawn at the lab run more freely. That appears to be a good thing because this lymphoma makes your blood to get so thick it won’t flow well. Luckily that was a robust red wine ‘cause the color would change otherwise! More tests, more bad news. The docs seem to think they are on a treasure hunt or maybe its Ali Barber and the thieves. They have very sharp knives at the ready. But you know - when I stop drinking and calm down – forget the Company - I don’t have all that much in the way of symptoms. The fact that the symptoms were not obvious is why the docs took more than a decade to find “lymphoma” their computer screens. Someone said that you shouldn’t treat shadows. In fact you cannot treat shadows because you have to be able to control night and day, move the sun around and re-invent the universe. Or hide in a dark cave.


For the very first time in my life, I want to be normal. I never wanted to be average before! I didn’t dare think about that option. Self-reliance, freedom, and individual achievement have always stood paramount. No-one dares be average. Woops, I said normal – not average. There is no such thing as an average person. They don’t exist; they are merely a statistical ideal. Whew! Can I be normal and still be me? To answer that, I have to find me. I have to know who I am. I have to find out what makes me tick. Then I will feel well. I need to wake each the morning and feel strong. No dreary wait for the night before to depart, or anxiety to achieve conquest over someone else to start my adrenaline flow! I need to achieve all that without hiding away from living: Because if I hide, I may as well be dead!

FINDING NED

To find Ned, I had to use my mind. To use my mind, I needed professional help. I needed also to see the effect that hiding away anxieties and problems had on my perception of reality. I needed to clear my brain of the trash and say good riddance to several destructive influences. The jargon is “cognitive therapy”. There are many ways to approach this - and one sure way to failure. That is finding some other place where blame can rest, for excuse to fester, for escape to appear, for denial to be justified. The stars call it “Rehab”…the denial process, I mean. Among those who took the month long course of treatment that I entered was a majority looking only to move their excuse set into another place. That would have been oh so easy! The system is designed to minimize your physical and emotional pain while transitioning your lifestyle and attitude. Take the easy road! Criticize anyone who might have aided your distress – physical or emotional. Wage war on their ghostly images. Goad them, but never change yourself. Accuse anyone or any thing that placed you at a disadvantage. Yes, that would be a very average attitude to take.



Extrapolating, though, you might as well have engaged a Class Action lawyer immediately at birth because it is certain all of your miseries will be attributable in some way to the fact that you were born. Your parents caused it. Roll on – it’s not your fault! I saw plenty of those reactions. I saw also a proportion of individuals who were determined to step free of the shackles recent life had placed on them physically and emotionally. They are - we are - the ones who get to find Ned. Survivors leave their terror behind. Whatever road we cancer survivors follow in getting our minds atop our destiny, we all learn to listen to our bodies. We undertake a serious partnership with our own body. We enjoy life together, an intimate couple…mind and body. Our bodies do speak but generally we do not listen carefully enough. When we feel really well, the windows open: both day and night are bright. This might not be full health in a clinical sense, but it’s a great base to have as we fight back with medical support against daunting health challenges. So you have the core step of my own journey. No intrusive measures were adopted, no drug therapy or surgery and nothing done that was off-the-wall. I found myself. Truly, I calmed down and worked systematically through redefining my lifestyle, diet and past-times. Habits were abandoned. There came a quality of life that was absent for many years. Life had been wretched. It is now a joy. Furthermore, I derive immense pleasure and satisfaction using that experience and things I discover to help others traveling this same road. This is the essence of survivorship. Yes, I have been lucky and escaped evident disease by adopting a journey of thoughtful living. And I find my thoughts and approach are helpful to others, as were for me in finding Ned. Along my journey of recovery I noticed quite suddenly that I felt better than I had in many years…and I pondered a bit. Summer was ending and autumn stirring quickly where I happened to be in Australia. A few weeks later back home in the US Pacific Northwest, spring was budding the maples and all the world seemed to be coming alive...I noticed that too. Obviously more than I ever had before, because one morning I wrote about what I was seeing – for the first time:


Tahoma

Hear the still of the night and let your imagination play. See the shadows of the forest transform on each dawning day. Feel the warmth of the sun and let it drive your cares away. Savor every blossom. Touch the breeze that makes it sway.

Let your soul breathe! Set it free! And cause it to fly: to paint its unique colors against the wide summer sky; outline the great White Mountain that stands serene and high; and set a focus for others who respond with kindred cry.

Bathe in the Pool of Reflection, so deep and profound. Flow with the cycles of nature that pass, making barely a sound. Watch the leaves of the maple turn red, and then float to the ground. Reach for the cup of wisdom, drink deep and share it around. Depart the crowds in twisted valleys carved by fear, beneath frosty blankets of mist that swirl, ever near. Climb the ridge and experience the vision brilliantly clear. Stand free at the edge to measure the depth in life; so dear.


CAMELOT – A PLACE TO THRIVE

Pride, reward and armor: that was the time of chivalry and chastity belts. To survive you needed good armor and you needed to conform. Otherwise you simply didn’t live very long! Actually, they didn’t live very long at all, back then. There is a myth about the importance of everything traditional – we have to be circumspect. Even so, we should understand that our bodies have not evolved to live for much longer than we would consider a short span. It doesn’t take very long to live a hundred years, so I am told. Our bodies are ill equipped for that endurance race but our minds seek even greater dimensions. I remember being shocked thirty years ago to be told offhandedly that I was entering middle age. And again less recently than I would like, another medico interrupted to remind me ‘You over 60!” So here we have the basic disconnect really, our bodies and our minds operate against different measures, to different scales of time and need. My mind has no intention of retreating to a cave without windows. So I have to resist decline and combat age. I have to find some practical guidance, as well as following those technical things the docs bring along. So comes modern day Camelot. This is place where proven warriors share memories, experiences, successes and hopes. The place is called a “Survivorship Group”. Gender, race and nation have no measure. We are human. We may not have the detailed science at our finger tips but there are usually nurses, doctors and scientists in the clan. Cancer is not selective. It reaches across all those inter-human boundaries that our traditions uphold. For each one of us, Ned answers the questions important to our individual worlds. Do you feel better after eliminating some of the obvious excesses – alcohol, sugar and fats, cigarettes and smoke? What mental stimuli or burdens leave you feeling down; can you lift the cloud by avoiding them? Friends assist with their perspective. They can advise on insurance, drug reactions, good places to get advice and a whole myriad of things. Those very things the healthy populations of this world should learn to share.


STAND UP Stand up! Be there for your friends. Need for compassion never ends. Remember when you felt alone: Fear rushed in to build its home. When tiny hurts made you fall, a gentle word stretched you tall. We are human – and so we love. Our joy fills the sky above. We are human – and so we weep. Our tears fill the oceans deep. We are human – you and me. It’s our strength, our destiny. Stand up, be there! Hear the call: Work so fortune might bless us all. Be generous in meeting need. Deny the lure of inner greed. Help others so they can thrive. Enjoy the fun of being alive. We are human – and so we love. Our joy fills the sky above. We are human – and so we weep. Our tears fill the oceans deep. We are human – you and me. It’s our strength, our destiny.

Stand up, be there! Walk the line. Gifts we offer return in time. Weapons we throw tear us apart. Love and trust soften the heart. Show it true for those who come. Know your work is then well done. We are human – both you and me. What we teach is our legacy. We are human – so we must dare use our minds and truly share. We are human – you and me. We do shape our destiny. Move on! Progress! Take a stride! Free the person who lives inside. Explore where you have never been. Give yourself the chance to dream. Think gently of events that are past. Look ahead for true peace at last. We are human – both you and me. What we teach is our legacy. We are human – so we must dare use our minds and truly share. We are human – you and me. We do shape our destiny.


COMPANIONSHIP

But now, that’s all very fine while things are going well…No! Attitude and outlook are clearly the most important when trouble looms. That’s what I have found, anyway. About a thousand patients/survivors with this one rare lymphoma called Waldenstrom’s Macroglobulinemia communicate via internet daily. For each of us, our body tells us what helps and what hurts in the finest detail – if only we will learn to listen. But frequently we just do not quite understand the language. Then we need to know what should be the best course of action, or inaction as the case might be. Others have been there. They have traveled a slightly different path. Self isolation can spell disaster. Our group extends sympathy and experience to each other and help for our bodies. Our membership extends across the whole world. Is it not a little sad that we had to get cancer to appreciate this truth?

If you have come to help me, you are wasting your time, but if you have come because your liberation is bound up with mine, let's work together.

Lilla Watson But not all comrades are equal. Someone, something is our single most important companion. This is the pinnacle of our being and our source of strength…then each day becomes pure poetry. And music is everywhere.

STORMY WAVES I don’t hurt any more

Stormy waves – crashing over my beach; safety gone beyond my reach; hope drowned by the rain; terror flooding my brain. But I don’t hurt any more since you opened up the door and helped to craft my escape.

I don’t hurt any more Fear, bloated – over grown left me feeling cold alone. Defeat was not due. When I looked, I found you. Now I don’t hurt any more since you opened up the door and then beckoned my way.

I don’t hurt any more Suddenly I need to wait and feel that storm abate - in the still hush of night before dawn’s growing light. I want more than to survive, I need to love and thrive. Run along the shining sand. Watch birds flutter at hand.

You opened up the door

Suddenly I have to stay to drive the storm away. Cast my mind to the breeze. Let the surf caress my knees. Defy the passage of time. Sing when the bells chime. Float on clouds at my feet. Enjoy each new day I greet.

You brought a whole new day Fear, bloated – over grown left me feeling cold alone. Defeat was not due. When I looked, there – was you. Now I don’t hurt any more. Since you opened up the door there came a whole new day.

You brought a whole new day

THE COMPANY CALLS

And I Don’t Care

Stand Up 1

Colin Perrott

Dedicated to humanity Colin Perrott ©2009

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Health & Medicine

Being A Cancer Survivor