crosseworks blog

Myself and I

Posted on: 11/22/2013

roycrosse     the cancer chronicles

June 19th. 2013

Robin's next Westnorth Studio Garden             Robin’s nest – Westnorth Studio 

In the beginning there is sheer wonder, some say a miracle, there is collective excitement then lots of drooling, and learning how to break a fall, and laughter and friendship, and language, learning to say what you mean – then you grow up.

Sometime in our grown up years, we experience a tectonic shift in the life story. I hope you are not thinking Hot Flashes. We discover all the grooming and coaching of our formative years now fall flat in the face of life itself; I want to speak to the manager comes to mind.  The manners of a civil life we learned and the ways of fundamental human transactions have all changed.  Put another way: your world has ended pretty baby, and there is nothing you can do about it. Sure, no one will deny you a qualified rage, so hot, your skin curls up like fried bacon in the neighborhood Dinner but your world has ended. Changed in ways you do not always recognize. You are still in the game, but the rules and the tools have changed; indeed it’s changing all the time.  It happened to your parents, and it will happen to your children’s children. It’s the way of the world.

You may ask, is this a bad thing or a good thing? You know it’s different, but is that that all? The mystic might say with some confidence: what you have now is a new life with new things to learn and a world of exciting apps to navigate. Hip hip, but it’s never quite that straight forward. You really need to operate in both hemispheres simultaneously, not choose one over the other. It’s dazzling and quick paced – things are done in a big way – the next project is bigger than the last, often done in hurry, sometimes for no good reason, and all of it all at once. It can be noisy and sexy and tiresome and fun, frustrating and costly, yes costly…a man could go broke by just staying alive.  Take Tyron, the man just up and died cause he couldn’t afford to stay alive another day, not another fucking day…that is some kind of broke.

But you don’t roll over. You find a way to reconcile the old and the new. Retool the old gears so they mesh into something you recognize, something you can work with. You may even discover you like some of it, all of it, or none of it, but you don’t roll over.  You find a way.

For me, the experience of living with cancer is rather like straddling parallel galaxies, two distinct worlds, two identities, and two selves – a pre-cancer and that other self you have been morph into – ”is that me”- You may well think of your body as a continent that was divided into two countries the way Europe and America divided Africa and what we now call the third world.  In this case, Cancer becomes the new Viceroy exercising authority with his own rules, rules alien to the indigenous culture. You notice rather quickly that these two entities are not in harmony, literally at war with each other.  Identities collide, rules of the Viceroy do not serve your interest, but you have to learn these rules to survive, at the same time hold on to those agencies that have served you well over a lifespan.  The twin country you inherit used to be a population of one culture is now on the brink of civil war. The body-country now has to serve two very different masters. The contradictions are loud and impossible to assimilate.

How much of the old self can we re-tool for this new territory? How does one re-fashion a personal mythology that has shaped a lifetime of living for a mythology of the unknown.  How do you come to grip with the loss of meaningful time spent simply lying down doing nothing in particular – I grew up in a household where you either eat sleep or work. You did not just lie down – what the hell is so fantastic about lying down – an abundant reservoir of raw energy suddenly unavailable.  What dreams do you forfeit, what ambitions become wishful fantasies. The mind has its own difficulty finding a template for this kind of dual living. But there is no such template. You have to make it up as you go.

In the beginning, there was much excitement. I mean big E excitement,  “my cup runneth over” attitude filled up my chest cavity. I was all up and down the best notions in life. Yeah! I can hear the chorus singing praises: I have the best treatment money buy, the best hospitals.  Phew, I spit on the stinking cancer. I said to myself “a little blip” a temporary distraction, we’ll cut this baby out and be on our way to a full life.  My house was calm, almost stoic, no sniffling and grieving and wondering,” Oh my, what are we going o do”.  My wife and self stood up smartly as if this was a fairly common event. We would take it in stride.

But that was not to be the case; it’s a five star event worthy of magazines, books movies and essays published in its name, its own clinics across the region and charity kiosk at a super market near you. People everywhere in every corner of the globe, far and near are running their backsides off to raise money. Anyhow you cut it; it’s a big deal.

IMG_2974I am distracted. Still sorting out self.  Still teasing out the now me from the other me, finding out how much of the old country is contaminated, corrupted beyond repair.

Learning what still works and what does not. What worked last week may not work this week or, ever again, and what can be retrained. At the same time I want to do nothing at all, a sure sign of contamination. And here is the rub, all the textbook symptoms can call upon you at once in a resounding concert and it doesn’t have to be a Saturday night, but no one is applauding. No reviews no headlines no one is buying season tickets, but you of the old country are guaranteed a full season.

Walking can sometimes be unsteady when neuropathy is fully expressed, your butt cheeks feels like lumps of concrete suspended from your hipbones.   The leg muscles burn and metatarsals feels like rocks in your shoes. You cannot help but remember, not too long ago you could walk the soles right off your shoes without thinking about it. You find new ways to do old tricks: cause the old magic wand and hat produces no rabbits

The sacrum which protects the urinary reproductive and digestive organs have suffered an attack, first by radiation, and now cancer have further infiltrated the area contributing to new strains of discomfort. I imagine nerve-endings damaged, frayed like the ends of retired rope. I will have to learn what skills still hold currency. There is much trading between old and new but the returns are trifling.   I have had to give up the way I learned to pee as a boy.  The pace of walking has slowed down in significant measures. No point in naming every malady but so far we are talking about mechanics – the way you do things, there is another side.

Mistletoe treatment – No kissing

The tradition of hanging mistletoe in the house goes back to the times of the ancient Druids. It is supposed to possess mystical powers which bring good luck to the household and wards off evil spirits. It was also used as a sign of love and friendship in Norse mythology and that’s where the custom of kissing under Mistletoe comes from.  Excerpt from online publication- Christmas Tradition.

But the mistletoe has a secret life in the world of cancers with a history of usage that can be traced to Europe. It’s not a stand-alone cure, but claims to boost the immune system making it difficult for the blood to produce new cancer cells, ticks up the energy and generally contributes to an enhanced lifestyle. The FDA, conventional practitioners and other mainstream agencies refute some of these claims.

It is Monday June 10th,a day no more remarkable than the last. I see Dr. Peter Hinderberger for the first time. His office is situated in the Ruscombe Mansion on a not too big but lofty hill in the Coldspring Newtown development in Baltimore.

(“The Ruscombe Mansion is a multi-purpose neighborhood community center featuring programs in holistic healing, movement and exercise systems, meditation, education and inspirational guidance” … Ruscombe flyer).

The man himself is of gentle spirit. Silver hair covers the round of his cheeks and most of his head. He is the man who will lead the Johns Hopkins study about to take place in two months. I am ahead of the trials.

We spend an hour and a half together in good conversation about my current plight, the mistletoe regime and how we will proceed. The medium size room is furnished with an examination table some typical doctor apparatus and lots of books on wooden shelves. The room is comfortable. He explains this is a practice he has been using for more than twenty-five years without a single complication.

In one exchange he asks:

Peter: How much alcohol you consume daily?

Self: None

Peter: Do you smoke cigarettes?

Self: No.

Peter: Do you drink coffee?

Self: No

Peter: “ What’s wrong with you”

After vitals and a basic examination he gives me the first injection, which serves as a crash course. I will be giving myself an injection every day in the abdomen. As part of last summer’s regimen, I had to inject my self twice weekly.  The injection had to go into muscle in the back side. Now, unless you had circus training, turning your body around seventy-five degrees at the waist to stick a needle in you butt cheek is not a fun thing to do, needles bend and I worried about harming myself by accident. This abdomen injection is candy by comparison.  The first part of the treatment comes with additional natural supplements he prescribes that I must take daily. My own food plans and supplements remains in tack, except to add asparagus twice a day. As of this writing it will be ten days of treatment and injections. I do feel better today than I did last  June 10th.  We will continue with the regimen until I have a reaction, not a side effect but a reaction: for example redness or itch, this is a good sign. At that point we changed the regimen.

Peter called me on Thursday to say he had received my updated medical records.

Hello, is this roy?

Self: yes this is he.

This is Peter.

Self: Peter? Peter who???

Peter: It’s Peter Hinderberger.

Self: Oh yes, yes, what’s up!

(He is a licensed medical and alternative practitioner who like his name better than ” doctor”)

He too seemed impressed or puzzled with my blood work. If it looks like blood work is a recurring theme in these chronicles you are right.  The results from blood work always get attention because I think it belies the status of the cancer. It is a reasonable expectation for a man in my state to have other health problems, but I don’t – for example, No anemia, or diabetes, platelets are in the range of a healthy adult (platelets have an eventual influence on healing), the ratio between red and white cells are better than average, I can go on but you get the picture.

Indeed, one of my doctors said my blood work was better than his. Figure that. “I have no other patient like you he said”. I see more and more evidence that my case is not so ordinary. Two years ago, when members of my oncology team was keen about what was then described as a morbid surgery, engaging no less three surgeons, I asked to speak with a patient with similar cancer profile and the hospital could not produce one. I thought they were being shy.

It has occurred to me I may have to charge residual fees for taking my doctors out of their white coats and into a world of practice where you treat the patient and not the symptoms. A world of listening and understanding how patient Madam Bloomfield is different from patient Tyron, a world of healing that is open to new innovations as well as old world practices. Medical practices bold enough to say the protocol for treating cancer is far too limited. A little voodoo?

I sometimes get the notion that the practice of medicine is about doctors, nurses, mechanical apparatus, a hospital campus the size of an Island nation with layers of  bureaucracy.  Every cancer patient under conventional doctor’s care will be the subject of meetings where a team of specialist discusses the patient’s scans,  lab work and issues related to the patient’s health. But the patient is never invited to participate. I wonder why?

…………………………………………………………………

The combined injury inflicted my body from the cancer and the side effects from treatment has turned the body into a whole new animal that not always easy to treat.  At present I am seeing no less than four doctors/specialists with a fifth on the sidebar. I have noticed that some complaints get no response at all, other than a pleasant smile and a look that says what next!  In one instance I detailed a number of problems I had to deal with daily. My doctor then said: “what do you want me to do”, insinuating I had to prioritize.  It was not possible to fix everything so I had to choose among the lesser of evils.

To be fair, just as I can be overwhelmed with the chorus of maladies, likewise, I think doctors are equally flabbergasted when they first encounter this Island man for the first time. I have learned over the years to respect my own limitations and to respect the efforts of those who care for me professionally and otherwise. I have come to rely on meditation not to be confused with medication, and a host of homemade remedies to manage pain.   A stunted appetite has reduced my weight to from 155 to 135 lbs.  But that can be remedied over ( a long) time. I have experiences that engage the world of pain and something else that feels like I am going to explode from pressure built up in the rectum. I have moods that swing between Louis Armstrong’s  “What a wonderful world”  and “Amazing Grace”.

For now: living with some measure of dignity, identity intact, and the capacity to continue productive useful work is probably the best I can ask. I have a will to succeed that is bigger than all America and stronger than the African bush elephant. I am what I am.

2.bird

End of episode.

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9 Responses to "Myself and I"

And YES you ARE.
Don’t use this word brilliant lightly – but brilliantly written with the usual weave of past/present/humor and humanity.

a true supporter.thx

As always so Authenticly and Beautifully written. The power and the spirit of ” I will” is amazing.

Sending you lots of Strength, Love and Light 🙂
Shaneild

Your will…very powerful indeed! Thanks for your courage to share our new “Roys”!!!

love you..Gloria and Matthew

Eff the Viceroy, Keep your spirit Roy! Much love, L

As I told you just a couple of years ago, your incredible spirit, courage, and yes, tenacity, is teaching all of us how to live – thank you Roy
Love
Carolyn

You are constantly in my heart, mind and prayers. I am learning so much from you. Stay strong and remember that I love you madly and am sending you my strength and energy.

I admire your strength in pain. It is because nice people like you go through such pain that I know humans are alone withourt any Gods or Goddesses to protect us. We have to protect oursleves.

Thanks Roy! Health work as art work. Very powerful and moving. All my thoughts and best wishes. Janet

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