Lesser of Evils.
the cancer Chronicles
November 10th 2013
Sometimes, smack in the middle of a good day bad things happen. You are a hair’s breath away from peace in the valley, the rain clouds of the morning have evaporated into the atmosphere. The sun is warming up an anxious audience for a repeat performance and then it happens: scum finds a way to drag itself up from the skin of the earth just to blur your vision, dirty your cup as if you couldn’t live without it, as if it were a sin to have yourself a good day all by itself.
For some time now I have been haunted by the notion of writing an episode free of pain, but once again my ambitions have been shamed by a brutal reality. While I wish the wish of dreamers the P word have come to define my days if not cast the die for all time.
It’s early October, the days come and go from bedtime to bedtime without notice on a seamless lumbering journey into the unknown. But the road is worn. It was travelled before today, the day before today and for weeks before that, more than three weeks all together. I try to straddle the gap between the new reality and my own capacity to standup. I want to do so many things but I do nothing. Intellectual paralysis sets. I think I cannot think. I am energized but I have no energy. The light of day fades into darkness and nothing gets done. I stand up and I want to lay down. I did not finish the book I started. My mind becomes a thing unto itself, it’s unattached floating in its own atmosphere like an old space experiment.
Emotions are heated up and nothing is clear. I am tired. I want to get up but I lay down again. Down is good. My body has taken on, or rather has decided to facilitate new and more extravagant manifestations of discomfort – you think I was a fucking travelling circus looking for excitement with a cache of broken down rides.
Tyrone says: Well how bad is it dude ? Worst than yesterday or not as bad as yesterday but worst than the day before?
And what about the mistletoe – yuh still taking that?
Leh me know if I could d anything man.
And the woman on the phone says: Isn’t there anything else you could try? I feel so bad. There must be something out there – yuh know, something you haven’ tried yet.
I may have reached my threshold maxed out my resistance. My boogieman is growing bigger and more ferocious by the day but my tools are flat, cold to the touch, old and tested strategies are falling short loosing their edge, fading under constant pressure to protect me from this unabashed evil. The demon comes to me with such power and complexity of offerings. The offerings come in layers like blows from the inside with tingling prickly connections to my extremities where bold swatches of hurt lay idle waiting to be ignited again and go banging about my anatomy, this time with a vengeance. This redefined activity is articulated with such gravity a grown man is rendered useless from one bedtime to the next for days on end. If it weren’t so bad you would think it was sexy but it’s just plain bad. Pain is a bitch no matter how well it’s dressed up.
I am hungry.
What do you want to eat?
I don’t know.
What is that?
I can’t eat that.
I don’t know. I just can’t. Not now maybe later.
I lay down again.
I can’t decide if feel weak because I am hungry or because I am tired, or, because am tired and hungry.
At the base of this new unregulated activity is a very frustrated man. He is beaming with ideas for new work; his spirits are high the voice strong fueled by a leak of restrained energy. He is excited but then again he is not. He doesn’t really have the energy but he does, he wants to work, but he is tired. He has a new movie project on the drawing table, yet he is stymied by conflicts that tear gaps between Will Desire and raw Capacity.
The demon is relentless radical and determined to spread the spoils all over the man’s territory. But fear not. The movie will get made along with everything else on the drawing table.
The man is silent.
I want to say I” feel good”, but I will be lying. And just as easy I am thinking about James Brown. In the “heady days” of the civil right movement when many American Cities were democratized with civil disobedience street protest, race riots, and animated with everything else that is ugly about America, many lives were lost. The likes of Malcome X, Dr. King and other visionaries saw a place in history for a new America. In time, laws were changed but the violence lingered on. In the face of the fight the likes of Sam Cook promised: “A change is gonna come”, Aretha kept us grounded with “Bridge over Troubled Waters”, Marvin Gaye asked “What’s Going on “, and James Brown preached “ I Feel Good” like I know I should and the people said yeah, amen!
Stones and Bones.
The man gets up one day and walks across the bedroom and his feet are gone. He is looking at it but it’s gone. He stops. Nerve signals are crossed and the sensation of muscles working is gone from the experience of walking. The machinations of muscle blood flesh bone and fat working together to transport the body from one fixed location to another is void of any typical or local sensation. The man feels he is walking on bones, his bones. He says to his wife I am walking on bones. He stops again and reaches for a Wall Mart style walking stick in the corner against the bed head and hobbles across the rest of the room. He is not worried. This is a familiar pattern it will be gone by afternoon or even sooner. It gets to be big fun when this new uncharted sensation happens all the way from hip to the toes, on that day no walking no sitting no hot tub and no laying on the back, on that day nothing happens.
Just before I die
I fire off an email updating my oncologist on the current state of affairs, this time I am nervous, well lets say concerned. I know this is not an aberration or an awkward phase. I know this a move to a new level. I hesitate to call it advanced. Home on leave – I see her stand-in instead. After a very basic exam and some discussion Dr. D and I agree to experiment with a pain patch. First, I am warned: Mr. Crosse I am afraid that none of what you are talking about is fixable (just go home and die for fuck’s sake). But we can try the patch… see what happens.
The patch; fentaNYL is not easily available. It’s a cloak and dagger affair, cloaked with rules regulating controlled substances and the other nasty obstacles put in place to save us from ourselves. Day one no results, CVS in my neighborhood could not supply the drug in the prescribed dosage nor make any promises. The response from the young attendant was what I would expect trying to purchase cheese in a smoke shop. RITEAID said the manufacturer may have ceased production. Getting hard information by phone was a no go. A friend helped me from one drug store to another between naps, I took day two off and we found it on day three at a Hopkins outlet in swinging down town Baltimore. I am excited.
That night my wife and I carefully tear through the layers of packaging and warnings with the excitement reserves for a child’s party. The small transparent patch is placed on my chest and pressed into the skin. We cozy-up under a bright orange comforter fluffed up over our bodies a rented movie on the small screen and we smiled a hopeful smile, wished the same wish without saying anything.
The next morning she left for work before I could see her face. It was midday when I turned my eyes to face the sun. By mid-afternoon I was dying for the second time in three days. Spinning out of control in a cycle of wretched events.
Stay quiet dude. Breathe slowly.
Stay quiet do not move.
Get comfortable first, but how. Just stay quiet dude – do not move.
Turn on the heat. Now curl into a ball.
Dizzy, cold sweats, nausea, every nasty thing opioids can serve up with visions of chemo dancing in my head I am dying.
The patch is worn for three days then changed on day four .The cycle of side effects continued daily with the biggest punch hitting in the early afternoon and running into the night, again with no clear relief from pain. On day four I ripped the patch off my chest- the experiment was off. I had to choose between the pain I know and the side effects of a path. I chose pain.
Hospice time is here.
In the meantime I have requested palliative care, don’t panic. We are not talking about hospice care where one is prepared for end of life, we are talking palliative care that will give me some measurable relief. Enough so that I may get as many parts in sufficient working order again to produce some good. That good which keeps me stimulated and fuels my spirit with a heartfelt connection to the world of dreams and hope.
I have a movie to make a book to finish for my grandson and a studio of unfinished work. I have to come back. An approximate start date is days from this writing. Stay tuned.
Epilogue: If you remember around the same time last year I announced a birthday. I am in the worst shape I have been for three consecutive days. Any scenario you can invent would suffice here details are unnecessary. It’s bad. Mid afternoon the phone rings.
Woman on the phone: Hello.
roycrosse? I am calling to find out if you called on me to find out why I have not checked in on you today.
Is this it- are you checking?
Well go ahead – check.
Yes…Happy Birthday roycrosse.
Thank you. I appreciate.
I am bringing you lunch-what do you want?
I don’t know.
Roughly one hour later the woman on the phone had roused up a handful of close friends and convinced them to show at the house. As long as the lady on the phone had a key to the house, she was free to receive guests and so she did, all the way up to my bedroom on the top floor- corn bread, and ginger-beer, tomato soup and I don’t remember what else, but more. And so, on the fourth day of November before the light of day disappeared into the night I celebrated another birthday with friends in my bed room.
No GPS, no dressing up or getting out of bed, no fuss over parking space.
Happy Birthday roycrosse.
I know it’s late.
End of episode.
Sometimes, we laugh so hard that we can end up crying, but you know “that crying” is from an exasperated joy. You are totally out of control. The best you can do is keep laughing. These two responses are similar in that they arc both emotional responses, but are fed by diametrically opposed triggers; one represents joy and the other sorrow. Likewise, in order for us to experience pain, physical or emotional we must be able to feel. On the purely physical level you respond to touch. You can feel the prick of a needle, and the difference between that and some one trying to lop off your arm with a machete, if that was going to happen you would feel it right quick.
But we find out under the right set of circumstances the body can indeed express two opposing sensations. On a platform where only one of these would normally reside we now have two opposing sensations occurring at same time in the same region. That region maybe a leg and hip combination, one whole side of the body, the back or the liver, an unusual phenomenon with no hard information on the subject, and worst no curiosity, a talking point for the next visit with my oncologist in August.
But August too had a case to make for itself. The August of 2013 came to Baltimore on a cool breeze, quiet like, with a warm heart and just enough wind to keep you comfortable. The air condition unit sits idle and frustrated fastened to the window frame like an out dated toy a place where tired atmospheric particles come to rest. August delivered days of clear blue sky with crisp hand painted clouds as fresh as laundry hanging in the summer wind. A puzzle for Baltimoreans, August is in crisis it looks and feels too much like September.
My appointment is schedule for Thursday afternoon with my Oncologist. As I cruise into the parking lot on the motorbike at Hopkins Green Spring campus, she is walking towards me just getting out of her car. I stop an offer her ride – we exchange greetings.
It was another one of those days disguised to look and like September with the same perky sky and a good cool feeling all around. After a sketchy beginning to the week I was anxious to exploit what energy reserves I had saved up from lying down. My head was clear but excited; the ride to Green Spring is quite wonderful if you use Falls road, a narrow serpentine two-lane road that rolls all the way into Pennsylvania. Rides can be very exhilarating all by themselves but particularly rewarding if you have been lying around in a half stupor for a couple days. Even before I got on the bike I was excited more than usual, it was a couple weeks since I could ride again, so here I was enjoying the ride on the blue monster as cool as the evening breeze off the Jersey Shore. “The Blue Monster” why do I call it that, it’s not a monster at all; in fact it is quite beautiful. I guess it’s a man thing – odd creatures men.
The meeting is one of mixed blessings. She, my oncologist is ripe with child, beaming, as she should, and looking forward to a new baby in October. He has already been named. I, on the other hand, was faced with less inspiring options. If I could be blunt there is evidence that the tumor in the liver is expanding, hence, multiplying the number of opportunities for disaster and it’s real pretty outside. Did you see that sky? We discussed the new challengers and steps to take. She talked about the possibility of organ failure and what would happen.
“And if that should happen”.
“If what happens?”
“If your lungs should collapse I could put you on a breathing machine”,
”Is this temporary”?
“No… because your situation is terminal, not reversible”
“ Forget it. If I cannot breathe on my own I am gone”, sugar baby.
I am not going to lie around like a sack of beans processing oxygen just because you have
a breathing machining, sorry. No can breathe – Him gone”.
She insinuates that I am in more trouble than I think, she maybe right. We talk about palliative care to handle the trials that will be expected with the increased tumor activity, we also talk about putting things in place. And it’s still pretty outside.
Her expected baby already has a name. To afford him some privacy or maybe it’s her I won’t tell you his name, but he will be the second of two boys. I am sure the family already talks about him in very real terms. Preparing his room and new clothing, his space articulated a certain way and with blue too. He, who has yet to be born of this world, has a presence in his world and in this.
We talk about what steps to take for the possible scenarios that could come about, none terribly exciting. I told her what steps I already had in place, but then I remembered and said this:
“I have a lot of stuff to do and I am not going anywhere till it’s all done”
And I think she said, “Start now”, and then I think we both smiled.
“Cut it out sugar baby you are killing me”.
The simple truth is we have ended up in a no man’s land of sorts, convention having nothing more to offer. And I, fully invested in alternative treatment but with one foot still on the other side so we can monitor changes in status and keep an eye on general health.
At the same time we can talk about some new and unusual events that are worth looking at. As mentioned before this new phase comes with dual packed activity, sensations experiences, a bacchanal of disturbing activity I am not sure what to call it. But here we have as much as twenty percent of the body from one side of the hip all the way down to the toes, trapped in a numbing freeze, its stiff, without feeling. You can beat it with a tire iron. Nothing. And yet, at the same time in the same region you have this incredible intense hurt surging right up the center of this mass, so hot oh so hot. What is amazing is that this can happen at all, not the pain, but the dual action…from opposite side of the same (nerve center).
The case to be made here is not about pain, it’s about the chilling malfunction of a system that (under normal circumstances) facilitate collaboration between neurotransmitters neurons and receptors; where these parts linkup to send messages across a network of nerves (nervous system) to execute very specific tasks, all messaging takes place in this network of receiving and transmitting signals from which the brain operates…and this system is now compromised or in street parlance: fucked.
These opposing sensations can occur sometimes in concert, in more than one region of the body at the same time (imagine the excitement) fueling the most vexing emotions a man can have, upsetting the equilibrium and dampening a man’s spirit. These expressions of the disease are exasperating totally consuming and finally, exhausting… and yet, no one is getting excited about the possibilities for more investigation. I am having all manner of complications delivered in some very unusual configurations and constantly changing. But no one is curious – no hard questions no real interest in this phase…(And so, the deity for doctors spoke to the sponsors of cancer and said: ”Speak not to him who has walked away from us…he who hast taken up the course of alternative healing …he is terminal we’ll just wait him out”).
I talk about these experiences and get no real traction, no meaningful feedback.
So we talk about “predictables”, all the things that can go wrong and how to prepare for emergencies. We don’t talk much about how you live now or what one might still hope for. You would think these unusual events draw some lessons. The fact that I am still alive maybe in itself a reason to be curious, is the man doing something worthwhile, are there others like him, or is this just a fluke, just a lucky son of a bitch who just happen to land in our laps. Should we turn over a few stones? Ahh, the sun will rise again tomorrow lets just wait him out.
Yet there is something very Twilight Zone about this phase. I find myself playing a hand in two worlds. How do you prepare for death when you are still alive, very much alive? I am cutting lines between life and death (don’t say death don’t talk like that). Mind you, I think I am going to blow all to pieces any minute now but until then I am still very much alive.
“You feel as if you are a co-conspirator in your own demise and bells go off in your head. Stop it”.
She examines me and then does some tests for strength, all good. She reminds me how different I am from other patients, apparently in just about all measures. The way I see the world, my attitude towards the disease. Ideas about therapy: all of her patients want more I want less, and I survive. But as we continued to talk I discovered that the particular configuration and complexity of my case was not duplicated anywhere in Hopkins history. This by its self is fascinating. I am profoundly impressed with the body’s capacity (any body) to bear so much discomfort for so long, and yet, continue to perform with reasonable dexterity. On many levels it seem impossible or unlikely, but it happens and is happening now. There is good reason to believe that a lot of what I share with my doctors, and my oncologist in particular is not common, not a single event but the combination of events and how they served up.
Is there a way to talk about these events that might be useful to the patient and instructive to doctors and medical professionals. How about the quality of life during this phase, should we re-evaluate the treatment is it too new for scrutiny? If these strange or unusual events can be quantified what would we do with the results. Is it worth asking the question? I want to believe that there is something here worth investigation, but I may be on the wrong side of curious or – the time line.
Another disturbing part of this song and dance with cancer is that there is an unspeakable point at which your team can give up on you. You can be as upbeat as you want they have nothing else to offer. You are left waiting for Godot, or, if you are a religious man that might be the second coming of Christ but I suspect he is a busy fellow with crises in the middle East and for all the other reasons people cry out “Jesus Christ”.
Is it too much to assume there might be value in this phase of my experience with cancer? Is there nothing instructive here? I learn to manage pain much better then I thought was ever possible, but that is just half it. Dealing with this business we call cancer goes way beyond coping with pain and discomfort. Your most intimate relation is contaminated with fear and uncertainty. It affects everything about you and who you are. It changes the way couples relate to each other, if at all, silence begets a new style of living and you drift along uncharted territory with no particular destination. You struggle to hold on to that person you know you are, and not surrender to that person cancer wants you to become.
Epilogue: I have a good friend in Toronto. She doesn’t mind being called “the Canadian Woman”. In one conversation she recalls a visit to family in Baltimore as a child. It was August. She remembers a hot sticky August too hot for her liking, too hot for comfortable living. But not this August, August came to Baltimore this year on cool breeze with a warm heart on a dark night on the tail of blistering July. And tonight it is a beautiful night with an ink sky and a moon bigger than you have ever seen sitting low in the sky. It’s still nice outside.
A couple friends have set up a support page online please visit the link below if you are so inclined:https://www.youcaring.com/medical-fundraiser/the-mistletoe-project/75529
End of episode.
Between the Cracks – roycrosse
There comes a day in a man’s life when he feels anything but alive, sure he can breathe, process oxygen and crack a smile if he has to but that’s about all. We are talking about a day when sitting up becomes a daunting enterprise, a day when all the maladies that can haunt the human body from large to small somehow find a way to link up and unleash their idiosyncratic offerings to the host that shelters them from the world. There comes a day in a man’s life when the best he can do is wish for tomorrow. Today was that day.
You have come to know these days, they come and go at random, and sometimes they can be quite deceptive. Like that nice looking day in June, talk about handsome, sunlight from here to eternity with a measured balance in atmospheric conditions, the kind of day for which some people say “thank God”. The air is easy to breath and temperatures are conducive to healthy social activity. I am just waking up. I am excited about the day, this time my brain is turned on; indeed it’s bursting with ideas. I am ready to take the day into my hands and mold it into my day. I cannot see my face yet but I bet I am smiling.
Then I discover I cannot muster the few scraps of energy it takes to get up. I cannot sit up. Is there a remote gadget for “ hey, I did not fall down but I can’t get up anyway ”? So you lay on your back and wonder. And you wait for another day. The way you wait for better customer service the next time you call the telephone company.
Many years ago in Toronto, at what is now Ryerson University, we did a project (Design Applications) looking at time space and energy. Candidates were required to record an entire day of activity from waking up to going to bed. The project required each individual to record the time you woke up and everything else you did that day, from brushing your teeth to breakfast, all telephone calls, who you spoke to and for how long. Distance traveled through your house or apartment to get ready for your day’s activity and everything else you did in and out of your space, how much energy you used to produce breakfast; coffee toast or what ever you consumed in the morning and for the rest of that day.
How much time spent socializing, and or working, and include maps of distance traveled, and diagrams to back up measurements, money spent, including a budget for what that day cost, and a time table. Amount of water you consume cooking and drinking as well as flushing down the toilet, also measure your intake of food for the day and your out put – waste. The project got pretty involved and was often repeated a second time, because some candidates did not take accurate notes or mistakenly skip an event, when that happens the project falls apart, things don’t add up. Even without doing the project, if you think about it for a while it’s easy to see how this kind of analysis can shake up the dusty corners of your world.
The project gave me an opportunity to scrutinize how I use energy and occupy time and space. It also took on a life of its own with its distinctive patterns knitted my day’s activity into a readable narrative.
So why are we talking about this now, because now, I find I am not too far away from the project. I am reminded of the apparent ease with which we meet our everyday needs, and yet, not always conscious of the many parts that must fall into place and what kind of energy is requires to execute these tasks. In my shoes, energy becomes a commodity, the prime factor. Good in exchange for simple physical movement, execute commands, process complex ideas, creative expression, intellectual negotiations, it’s everything I ever wanted but I am in short supply…do I have to go green?
Pain becomes a death-defying test if you do not have the raw energy to manage the discomfort, to provide your most basic needs. So you lay on your back and wonder. But I don’t think wondering is a good thing, it’s bad for the spirit, it’s not to be confused with reflection, thinking, introspection or even daydreaming, its just wondering with no end game.
Some might argue my energy supply is unstable. How much of it is fixable and what if it’s not. Is this just part of the end game? I have to be more discriminating about how I use my supply, but again when it’s good it’s very good. My challenge is to reconcile these differences, these multiple personalities, and find a peace full settlement between the person I am, the person I was, and the person I aspire to be. I think I am wondering again or is it intellectual titillation – the mind gets pulled in several directions, for a minute you find yourself thinking about how much raw energy the brain needs to process simple thoughts.
You see its easy to get on with this kind of thinking, But when the tank is empty no processing takes place reading does not cut it – you get nothing but morewondering. On the plus side it never last more than three days, but that’s a lot of wondering don’t you think? It will be sometime before I can feel comfortable just lying on my back. I hope I can avoid it in the future.
Over the last nine weeks or more I have made a few new turns. The day-to-day rituals, and regimen have changed, with the focus more narrowly framed around the mistletoe extract as the lead agent in this new approach. The mistletoe is taken in conjunction with natural supplements. One such supplement provides adrenal support, peg up the energy supply, another provides support for the immune system and so on. Together, a cast of injections and supplements make for am impressive healing force. Then it gets interesting; the puzzle of sorting which supplements to take what time of day and how often and in what dosage is almost enough excitement for a days work. Yes, I have had the little rectangular plastic boxes, and the circular one and the daily and the weekly version, and if you are truly disciplined you can even find morning and afternoon boxes but in the end it’s all about remembering and it’s only a small annoyance.
So here we are situated several weeks into the new treatment and what happens. First I started with daily injections as the main event in conjunction with above mention support. I am expected to have a reaction before the course of injections is complete, but what happens. I finish the injections and no reaction. Now I am nervous. It’s the weekend no more injections and no reaction- nothing. Is it my fault…should I be feeling badly, is my body not worthy of a reaction, what does this mean no reaction. Am I disqualified?
Saturday comes along and I drink the weekend up slowly, very slowly and I talk to the spirit and I say to myself just slow the hell down, watch your breathing. You see for all your good effort improvement and healing could be sketchy and sometimes difficult to quantify. I think sometimes the beginning of any new treatment is a bit like your first date You have high expectations, but in this case it’s not happening, no reaction, why? Is my injection not man enough for me, or I not enough for it. Stop it! Thinking like this is almost as bad as wondering.
Mid morning Monday I am on the phone with my doctor and we discuss the problem. It’s a mild morning not too sunny and we are both quite somber in our conversation. No reaction, he repeats after me on the other side of the digital connect. I explained what I understood to be a legitimate reaction and we agreed I did not have one.
Solution: in a couple days, he said I will receive by mail a new dose and this time I will have a reaction. Like a proclamation; this time you will have a reaction. I like that. Confidence. Take this and that will happen. Given my pattern of peculiar responses to medication I have my moments of suspicion. The morning after the package arrived I prepare myself for the injection. I like my injections in the morning.
I take the injection and I wait the wait of an anxious man. I told you I hate waiting. Nothing the first day, but on the second day there it was. Reaction!Hah, I breathe softly – a reaction. I feel the satisfaction of a satisfied man. I am pleased. I call my doctor and we agreed on the reaction – a lumpy area under the skin that becomes swollen, reddish and itch like a bitch. But it was a good thing, and from then on my dosage would change. Now I do an injection every other day instead of everyday. But this time the reactions are ongoing with every new injection, so I do right side abdomen day one, and do the left side abdomen day three and so on.
The treatment is in its second stage now and all appears to be well, meaning I am having appropriate reactions to the treatment. Then today July 31st I will start another cycle of injections this time taking one every day. What is most unusual about this regime is, although I am working under the guidance of a doctor most of the treatment is self-administered, we do phone consultations except if I have to go for a visit but most of the time I am on my own. I am still scheduled to see my regular oncologist in a few days of this writing.
I believe the treatment is beginning to have some impact, in spite of the challenges with energy supply I am still fully charged and some times I can carve out a pretty remarkable day for myself, once I get up. It is still too early to give a full account.
Sometimes in the morning when you getting ready for the day, after the shower and before breakfast, you take a quick half wrap with a towel and just before you leave the bathroom and take a side-glance at yourself. You do not move your head, just the eyes turning slowly in the direction of the mirror and then a quick return. You don’t want to gaze at your self you just want to make sure not much has changed overnight, or since the last time you glanced. I found myself glancing and even at a glance, and after enough glances I can see things are different than a few days before, indeed changing.
The next morning I repeated the glance and again the day after, by now I am a steadfast glance-er – no it can’t be; but there I was day after day, glancing left-side glancing right side. I was witnessing the slow decline of the once almost handsome chest I carried, not a big one mind you, not the magazine version but still good one, a little muscle here bit o fat in correct proportion you get the idea, just enough machismo. And now, it’s just a shadow of its former self spread across my ribs, laid out flat like yesterday’s pancake.
Near panic – I get on the scale and weighed in at a shocking 128.6lbs. I was fourteen the last time I weighed 128lbs, a teenager for heavens sake. So I am heavier than a fifth grader, one hundred and twenty eight stinking pounds. What happened? A little more than a month ago I was climbing the scale past 139 dreaming about the fifties. Now I am back in Wonderland.
Finally I was able to get some explanation for what I call the Rock Bottom Syndrome. You won’t find this in the medical encyclopedia. If you remember this was mentioned in the last episode. You have an experience where the butt muscles, the gluteus maximus muscles feels like rocks, indeed the entire pelvic region become hard and numb. So when you sit, you have the experience of sitting on stone or concrete, something hard and uneven, painful. But the muscle remains soft to the touch – now how much fun is that? Apparently the sensation may be the result of losing muscle mass, and tumor(s) pressing against the sacrum, “I need me some muscle tone baby “- damage to the sacrum and the general malfunction of neurological activity in the area. This could mean I am putting extra pressure on the nerves. When first signs of neuropathy appeared more than two years ago it was quite different, no less harmful but different. I was encouraged to hope it would eventually fade away into a dark night, but no, it’s alive and well taking on new forms of expression. I started to say I am determined to get to the bottom of this so I can share with you the facts behind this rare an unusual phenomenon. But as it turns out getting to the bottom of Rock Bottom Syndrome is of little relief , I need to put more weight on the body, get those pectorals looking like muscle again add cheek to my cheeks. Indeed I need to Fatten-up meh-self for Cancer.
But between myself and I we are busy. We continue to sort things out, tracking new sources of pain and other peculiar manifestations of cancer, exchanging ideas and keeping the spirits high. Oh did I tell you? I did the dishes the other day and afterwards we both had to take a nap.
I want to take a line here to say thanks to Helen Elliot, Johanne Reid and those who organized and contributed to a very successful Jazz in the Garden benefit for me on June 30th. Thank you. A similar effort is again in operation this time by Robbye Apperson, with an online fundraising site seeking funds to pay for treatment not covered by my insurance. If you are inclined to participate please click here. roycrossehttp://www.youcaring.com/medical-fundraise
Thank you again for your support
roycrosse the cancer chronicles
June 19th. 2013
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.
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?
Peter: Do you smoke cigarettes?
Peter: Do you drink coffee?
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.
End of episode.
roycrosse May 22nd 2013
It appears I may have over stated my expressions of success in the last episode, incremental as they were, in dealing with the mother pain and other noticeable improvements. I should know better. When I was a wee boy my mother warned me not to brag. Something has gone wrong. “If you are good they will find you no need to brag”, she would say, or something like that, but a wee boy has nothing to brag. Her good counsel was wasted on my tender years.
A cold slow rain has taken hold of the night it will not break its hold till morning. I am flat out in bed trying to find a comfortable place shifting my body from one position and then another, trying to find that sweet spot between one discomfort and another. I want to put the body at ease and at the same time quiet my mind. I am breathing a slow conscious breath.
Before I can find the spot: Rat tat tat – rat tat tat, with each hit splintering into new veins of attack before breaking into minor threads and falling apart. It’s not the Tommy gun of Capone’s Chicago, not the assault rifle, the signature tool for America’s Mass shootings; in fact it’s not a gun at all. If you had to draw the figure of it, you would mimic graphics we associate with a lightening storm, a bad one. We are talking about is a new and extravagant manifestation of pain from a new sources.
I consider two possibilities: first, the “body intelligence” got wind of my alternative strategy, convened with the nervous system and pain centers and decided to change its stripes. The pain in its deftness, has reinvented itself turning up in an entirely new form, not only that, but has designed a new delivery system and who doesn’t like the “re-invented”
Option two: The body decided to make up some new and exciting pain episodes just because it can. If you do not like these options, there is a third: the tumor or tumors have grown sufficiently large to press against other vital organs causing these less than exciting pain episodes.
To add weight to my frustration we now have a new source of distress.This is how it happened. One evening last December (2012), I found myself in an over whelming state if discomfort. After a few hours of experimentation I had come close to exhausting my best coping methods – the ever loving hot soak with Epson salts, this can be extended to include scented candles if you want to get mushy about it– the inhalation of cool herbs – affirmations – ritualizing my affirmations-meditate on my meditation, a simple yoga exercise. The trials continued but for this evening nothing would yield. No relief. Finally, I dig down deep into my bag of pain killer tools for the final straws, the heating pads, all three of them.
No laughing now: One for the chest one for the lower abdomen and one for the lower back… now we are getting deep into pain killer territory… when they are all plugged in I wait for the blue light to go off then I turn each switch on gain, easy. I am as toasty as a Canadian grill cheese sandwich in a winter storm. When the pads are heated to the correct temperature they turn off. Nothing could be safer.
Eventually I would fall asleep and just to be smart, the heating pad, the one that always turns off automatically, the one my back-side sits on now, for no particular reason does not turn itself off, but instead registers a severe burn on the raw plump side of the left cheek right through to the epidermis and dermis where blood capillaries and nerve endings reside. We are talking about naked blistering watery pink tissue, and here is the rub, I never wake up. I never wake up. Tell me this man does not know how to manage pain. You can burn down his bed, he in it, and the next morning he wakes up smiling. Oh wait, first a frown then a smile. The frown is part of his sleeping profile.
True I did not wake up. The burn is severe enough that almost six months later (as I write) it is still healing. Now in addition the mother pain we have this, in all its extravagant manifestations, rat-tat tat – rat-tat tat.
You can die if you want, but don’t get sick.
Mason called me up the week before. We had not seen or spoken to each other in several months. I agreed to have lunch with him at Joe Squared a neighborhood cooling spot.
I arrived a few minutes before Mason and seated myself in a comfortable table for two. I ordered tonic water with lemon.
Mason enters: I didn’t expect to see you alive
Self: What ever do you mean?
Mason: Well, I didn’t think you would last this long…you are looking good
Self: It’s the least I can do…you think I have over stayed my time?
Mason: It’s not that …you know what I mean; you are doing well, you (he hesitates) never mind… good to see you.
I have heard these comments from others before.
We have a quiet lunch with Maryland style crab cake sandwiches a green salad and more lemon infused tonic water. I bring Mason up to date.
It is fair to say an essential part of any healing method relies on good judicial application of the respective therapies over a sustained period. My own challenge with alternative treatment was finding consistency, for one, my insurance will not pay for any part if it. Paying for weekly treatments out of pocket eventually runs its course and soon enough you are in a holding pattern waiting to resume treatment or having to give up one part of a three-prong approach. In short, what started out to be a well-crafted plan of action easily falls prey to obstacles, so how do we measure success?
Over the past several weeks my insurance provider have taken on a rather “Republican Attitude” saying no to everything including standardize scans and doctor prescribe medication. Only two weeks before this writing we had a fight on our hands to get a follow up CAT scan after my blood work revealed some alarming CEA numbers. The company after reviewing clinical notes from my doctor say they did not have enough “clinical information” and denied the request. Several days later they backed down.
America now spends more money on health care than any other developed nation …some say: “it’s the best system money can buy” but outcomes in critical areas of care remain sketchy, as the cracks between administrators and care-providers widened. Meanwhile, the industry continues to pour money into research for marginal improvements on existing cancer drugs while alternative methods generally go unfunded if not ignored, and practitioners often demonized.
I sometimes wonder if the Medical Industrial Complex should take up the practice of issuing Reward Cards. Like you would get from your super market, which will earn you points. Points can be awarded on how many times you were rushed to emergency, or number of surgeries, or organ transplant, or degree of injury: for example: a broken arm maybe worth 100 points. Heart attack could be as much as 1,000 points. If your health provider screws up or makes an incorrect diagnosis you also rack up big points. Your points may earn you a bus ride to Atlantic City or shave off dollars from your co – pay. If you are very sick a trip to Mexico. However, if you did not survive Mexico your points can be can converted – free cremation with a toss of ashes into the Atlantic Ocean Don’t you want to have an American Hospital Reward Card? The Canadian don’t have anything like it.
Twisting and Turning and Running out of Steam
To be sure you are on track with me, remember my interaction with doctors and health professionals are divided between two institutions and alternative practitioners. My current Oncologist and cancer treatment is with Hopkins, while personal physician and other specialist is with University of Maryland. However, the original cancer surgeries were done at University of Maryland. And for the trivia experts in the last three years I have been rushed to five different hospital Emergencies, five screaming ambulances.
I am visiting my personal physician. I draw out from my shirt pocket a short list of questions.
My doctor responds: “And why do you think you are having these problems, so many bad days, why do you think these things you complain about are happening to you”
Self: I have no idea. I have been through a period like this before but I thought I was over it. Yet all these problems are back again, nausea, low energy, more pain, and no appetite…as I continued down my list of grievances.
Doc: And you don’t know why.
Self: No, that’s why I am here,
Doc: The answer is simple, you have stage four cancer, and all is not well.
The tone of the visit changed and soon we are talking the way old friends talk, we talk about a plan of action, legacy, and what I might leave for my family and my grandson in particular. Strange talk but he did have some good questions.
May 2nd. On the other side of Baltimore, Green Spring to be precise, the CAT scan was completed
May 9th. I see my Oncologist to review the recent blood work and the scan. It’s a morning made of shifty skies, twisting clouds changing tone, now sun, now overcast, but the man on the radio says it promises to be nice – sometime before the day ends. My wife drives me up to the steps of the clinic. I ask her if I am still sexy and good-looking…she says yes, we say good byes.
I am high on will but very low on energy. I get up to the office and register. I am not looking good. The ritual of questions and “taking vitals” begin. Weight is down, pressure is high, pain is high, new pain in the chest is announced, and soon enough I am being rushed off to emergency at St. Joseph Hospital. Not again! The morning was quiet and shifty and quaint in the way a spring day can change its tone from dark to light cool to warm.
Immediately I am fixed up for IV, hooked up to EKG monitor, blood drawn for more labs and the games are on. I show up and the clinic breaks into fit of excitement. I am anxious. I have a gig tonight, an after party for the Maryland Film Festival. I cannot be in the hospital and do a gig half way across town at the same time.
Doctors are concern there might be some damage to my heart. My wife is summoned and comes right away. She plunks down a laptop and sets up a make shift office in my room and tries to satisfy her corporate obligations for that day and attend to me. If there is such a thing as a “Heart Attack Alert”…. if there is, I am on it. Chest X-rays, more EKG, labs and tests associated with heart problems are initiated. By end of the day I was discharged – reluctantly – with more follow up tests to be done the following week. Once we got home I rested for a couple hours and was able to meet the 9.pm start time for the gig.
We still have to complete the visit with my Oncologist that was aborted to do tests on the fake heart attack. I am waiting for a call. It is a week later, a Thursday, and we are ready to discus the scan. This time my energy matches my will, my clothes fit better, I feel better and the vitals are with in “normal range”…hip hip. But the big story is not a good one.
Here are some highlights: based the radiology report the chest now host two new tumors as well as an increase in size of two previous tumors, the heart is normal size with a trace of non specific fluid, the liver increase in size of existing tumors and one new tumor. Generally, increase in size of existing tumors wherever they are. Roll call: cancer present in lungs, kidney, liver, and pelvic region including the bladder sacrum rectum etc.
My Oncologist is filled up with smile she is having another baby. The first, a boy must be two plus by now. She came to the reception for my War & Peace installation just around the time he was born. She is rightfully happy with herself her belly all round and ripe, and, as if I could not tell: she says, “ I am having another one”. I congratulate her but I am disappointed. I had convinced myself that things were somewhat stable, or, at the very worst moving very slowly and maybe that is or was the case, but nothing remains the same. To be fair, there were some good results from last Summer’s Ozone treatments and my personal regimen, buffet style as it was, and there were also many good things in the report, for example the main pulmonary artery of the heart is normal, platelets are good and so are blood cells among other heroics. And in spite of what we know about the lungs and liver they continue to operates fairly well, so far. The lesson here is: although several organs have been invaded by the metastatic sweep most of them continue to operate with impressive fluency. I can still breathe and better than that, show up for lunch dates when some people think I am dead. But the increased tumor burden makes looking at the horizon hard on the eyes. An ugly narrative no matter who tells it.
The fall out from all this activity; increase in tumor size, presence of new tumors, tumors in places not present before, re-invented and old pains, is that precious energy is engaged to keep all this up, a tremendous burden on the body’s biology. This bad behavior is robbing the body of energy that otherwise would be put into creative use. Hence I am almost always tired. Except for the promise of a live performance – music. The body’s biology must have tucked away somewhere a secret supply of energy just for the music. For that I give thanks.
I believe there is a place somewhere in the mind’s eye to settle these scenarios. Somewhere between dead horror, raw truth and reconciliation with life’s offerings, where one can situate one self to process, and assimilate these soft and hard realities. I believe there is a place for quiet mindfulness, where one can distill one’s own truth from the spectacle of the day, prepare oneself for the eventual fall-out without the need to surrender. I used to know that place well. I practically lived there, but now that place is contaminated, corrupted, defiled with numbers, scans, tests and clinical reports enough to drive a man to distraction. That place is out of my stream of vision. I must find it again.
There is abundant juice left in the man from rum and steel band country. The man came here to make a difference and he is not going anywhere in a hurry. He has still many marks to make and Harley moments to be realized, garden to fuss over and most important- family, old and new. He is not going to stand in his shoes and wonder. In a couple weeks of this writing I will see an alternative practitioner who is experimenting with Mistletoe, as usual, there are mixed reviews from the conventional corners.
“ In the middle ages mistletoe was used in a variety of complaints, such as epilepsy, high blood pressure, stenocardia, asthma, sterility, depression, and sleep disorders. In some folklore it possessed mystical properties, supposedly protecting against fire and illness, ensuring happy marriage for engaged couples, and bringing luck.”
– Christine Murphy, Mistletoe and Cancer Therapy.
This new practitioner exploits both conventional and alternative therapies and is guided by Anthroposophic medicine a concept based on spiritual awareness as the foundation of individual health established by Visionary and philosopher Rudolf Steiner (1861-1925) the founder of Anthrosophy.
Steiner offered substantial new insights into the nature of human beings and how medicine can be extended to include knowledge of body, life, soul, and spirit. – Excerpt from medical publication.
I have also revisited my old regimen and tweaked where necessary for maximum benefit. It’s an ugly business. I will continue to see my Oncologist who wants me to reconsider a mild version of Chemo and limited radiation to slow down the growth. But no, I will do it my way. It was Kathy Bates, who in the movie Fried Green Tomatoes, said: I am too old to be young and too young to be old…I say too much alive to think about poisoning my body with Chemo.
Homage to my sister Nelsia Gordon-Miller.
In the middle of February while my wife and self were still celebrating, our heads giddy with excitement, our veins flushed with pride for the arrival of our first grandson born January 2013. In February we were still celebrating when I lost my sister Nelsia to cancer. She was diagnosed in January and by mid February. she was gone. I remember you Nelsia.
End of episode
The Cancer Chronicles. January 13. 2013
This is not a hard time nor is it an easy time it’s just time, time for renewal. A time to re calibrate old systems dust off the aspirations, and for some, time to revisit left over dreams that remained unrealized the year before. And then there is the review: what was all that about, some of it was tough or downright painful. You remember. But was it any good, did it mean anything, were you able to sieve out the melody from the music? Retrospection, introspection, you know what you want but you can’t be sure you’ll get it. But isn’t it always like that, more questions than answers? The promise of good things to come suspended in parallel universe.
In spite of the six-month warning here I am. Alive – new territory lies ahead. No bragging here just showing up for life, taking it in, one song at a time. But a nasty thing, a low down nasty thing is beginning to inch up to my periphery, hang around my sub conscious. I will have to tell you about that too but not right this minute.
Just over thirteen months ago I opted for the alternative approach. It was plain as day to anyone paying attention, my prescribed chemo / radiation protocol was producing more bad than good. It was time to stop and so I did. Just before my birthday in November 2011. I took my body back from the white-coats and the wretched pattern of activity that passed for treatment. I celebrated another birthday and said that’s enough.
Most of what occurred over the last year can be best described as experimental. My focus was going to be nutrition-centered. The shift would bring about much anticipated, and some unexpected relief. Most obvious, was the absence of some side effects from the treatment, and of course, the treatment itself, and a good case for the cure worse than the crime.
My level of discomfort can be notched down a peg. And hopefully, there is enough life left in me to arrest the damage, and, with the grace of the universe if not luck, begin to heal thyself – a long-term project for sure, but there is that business again where dreams and time collide.
My first task is to strengthen the immune system. I need to find competent professional support, some person(s) to assist in navigating the waters of my self-styled journey. And if you did not know it the path to the alternative medicine world is abound with contradiction. It can be a lonely place.
At the same time I am chasing the supply source of an herb given to me by a relative. After days of detective work I find the supplier. The woman is situated in a small town about sixty miles west of Baltimore, tucked away between a major highway and a not so important one and then there is nothing. You have seen places like this before on your way to the family gathering for a Thanksgiving weekend, or, was it Labor day. You see the Town and ask …why?
The woman is not as tall as she first appears but you are not disappointed with the close up. An angular woman with a pale face and head full of jet-black hair falling straight down the back of her neck, pass her shoulders. Her face was without expression and as ordinary as Wednesday. She is everything at once, a nutritionist, iridologist and storekeeper. The store would sell products and supplements she recommends. One stop shopping anyone?
First consult: she examines my eye using a magnifier, a flashlight and camera, then an enlarged image of my iris was broadcast on a computer monitor. The computer image is compared to a chart, which divides the iris into 80 or more zones. Iridologists believe, that details in the iris reflect changes in the tissues of the corresponding body organs. One zone reflects the kidneys and so on. She described her observations and makes recommendations for a diet plan and prescribes a list of supplements.
After the second consult communication between us lost its heat. At best it was difficult, she was a rare user of emails and the telephone, well, that was as good as Verizon could get on a bad day. The day you have to lop off half your morning just to make contact. The plan was abandoned after a little more than five weeks. Her diet recommendations were too severe and became unsustainable. I was also beginning to feel I had made a wrong turn into the land of hocus-pocus. To complicate the matters further I started dropping weight. Fast.
Food and sleep became major stress points. Gobs of energy expended without benefit. I could neither eat nor sleep with any consistency. I was burning up lots energy trying to figure out how to rescue myself.
I remember spending a weekend with my daughter and her husband at their Gloucester home in Massachusetts. We spent a good deal of that weekend fussing over what to feed me and how much I should eat in order to arrest the decline. She designed a well-researched plan to help out, but in the end her plan ran counter to the objectives of my own food plan. There were to be no easy fixes. I continued to lose weight.
In a state of near panic I crafted a new plan using the best of what I learned from Ms. Black, two other professionals and my own detective work. Over time this plan would evolve taking on new ingredients and moving in a direction I had not traveled before.
I continued to seek out consultations with new and far away experts (notice how the real stuff is never in your neighborhood). By mid- summer I am working with a young doctor who is licensed on both sides of the medical divide, with papers to practice conventional and alternative medicines. He is a small man forty-something with a manner so calm you could color him passive. His home and office occupies a modest house in yet another non-descript Maryland suburb. He is a good listener.
In the new plan I reintroduced citrus and a variety of fruits that were on Ms. Black negative list. I also added more carbohydrates – not to forget sweet potato (a good source of potassium) – ah, bake those suckers for a snack at night. In addition to plant based supplements, I added high dosages of intravenous vitamin C, administered by Dr. Small, first, twice a week and then once a week. Since insurance will not pay for any thing outside conventional cancer paradigm money can easily become an issue.
The most novel of these experiments was the Ozone Therapy. The treatment consists of taking blood out of the body infuse the blood with ozone gas (03), this by the way turns your blood into a delicious crimson color. The infused blood is then returned to the body. The process is a way of oxygenating the blood. Cancer cells cannot survive in oxygen-saturated environment.
I also experimented with the ozone sauna; this technique is good for ridding the body of toxins. You are naked, incased in an individual sauna capsule infused with ozone at 125 degrees, for a half hour…Jesus Christ dude, watch out you don’t boil your prick and cook–up your little bitty sperms. You sweat like rain. At the 59th minute you are about to pass out and the process shuts down. You take a shower in the doctor’s office, change, and you are ready to take on the United States Marines. I love it. In addition to all the above I take Lypo – Spheric Vitamin C, in dosages of 2,000 – 4,000 mg daily. I also had two sessions of Vibro-Acoustic Therapy, a technique based on sound waves and music. There is more but I am weary of saying too much here. If I succeed I may be put in jail for curing cancer. More important though, I don’t want to suggest that this is advice to anyone. We are simply looking at some of what I have experimented with over the last thirteen months.
To be sure there have been some gains and some losses or new trouble spots. A little bit like fixing the transmission only to have the ignition go bad. We will talk about those in an up coming episode. One most obvious benefit is: I am still alive, and one major pain…wait boy, don’t tell me… the pain in the ass is gone. After almost four years of constant agony it just up and clear out of my ass without a note of explanation – it’s a note I don’t mind missing. I turned down the spinal injection and new prescriptions from the pain management specialist, not because I am tough. I simply could not fathom the side effects promised by these new interventions. I have enough side effects to trade on the open market.
For thirteen months now I have taken full control body and monitor everything that enters and leaves. Call me finicky. Although I still see a bevy of specialists I decide what protocols to follow. The scientist would say: where is the science, and they are right. I cannot say with any certainty what plans have healed anything. But I know some things are better.
Last year, I accepted an artist in residence award from Coppin State University here in Maryland, and was able to deliver a major solo exhibition, several workshops and a lecture related to the exhibition. I participated in several group shows, and performed a string of concerts with the newly formed quintet, and, I continue to produce new studio work. I am not fighting cancer I am simply living the life I choose.
If that’s not enough, I have also added some pounds over the last six months – graduated from 130’s to 144.lbs 3.2 ounces. Love the ounces. Okay, I am still under weight but 44 is a long way from 30. I suspect, indeed I know Tyron’s wife will not be impressed because she can add ten pounds to those juicy hips in two weeks. But for me it’s a deal a very big deal and the daughter is proud.
Staying focused and capturing good sleep is still problematic, and energy travels like alternating current up and down my system, sometimes running clear out of reserve. However, I manage to get bits of sleep in shy corners more often than I did one year ago. And, for what its worth people who love me say I look good. Are they bias? But you cannot see the added pounds. Like the D in Django they are silent.
If you remember in an earlier episode we agreed that work, at least the work I do, was contributing to the healing process and had become a major distraction from pain. As long as I was in the studio doing something useful, drawing, painting or working on a music project, a practice session or rehearsing the band, as long as I was busy with authentic work my spirit was soared, stress was low, and pain kicked over to the side bar.
But now I find out that music has taken a commanding lead with a profound effect on my well-being. I discovered, that I could stand up and deliver a demanding music performance on very little sleep. My energy seems to find its charge in the music, and multiply, a cyclical event. I put it out and it comes back to me three-fold, once again no science. But I could be wrong.
The point here is not to say look here at what I can do. Sometimes, I simply cannot get to sleep and some of those times I may have a gig, when that happens it turns out that I can do the gig and feel rather good while doing it. I found out I can do something that feeds me and fuels itself. No science here either. Is that magic or epinephrine! How ever you measure the nasty events good things are happening.
And finally on Tuesday January 8th daughter Aja, delivered to this wretched earth, a lovely baby boy nineteen inches long seven pounds and two ounces…love the ounces. Not a bad beginning to a new year.
This is not a hard time nor is it an easy time it’s just more time.
End of episode.
Sequioa at 4 days old
A Pain in the Ass.
Posted Sept 4th 2012
There comes a time in a life when comfort comes in very limited currency and peace of mind becomes too difficult to negotiate. Stakes are high and old strategies die fast. Food is simply not enough. No measure of smooth garlic-mashed potato will soften the edge; nor will sweet baby corn doused in olive oil or any combination of exotic foods from the Far East fit the bill. Yet, at the end of a day man finds a way to carry on.
I was doing better than well enough, or so I thought. I wanted to congratulate myself and hinted to my wife one morning as we shuffled around our re-built galley-style kitchen making breakfast. She was working on a home brew fix. The smell of new wood and coffee mingling in the morning air was enough to get a good man drunk. I love the smell but have no appetite for the darker than black intoxicating drink. I was to start my day with a purple colored smoothie of berries and flax seed. The oversized blender interrupted our exchange with a thundering roar like that of a passenger jet cruising the runway.
“Why,” she asked. “Why are you to be congratulated?”
Well I am doing everything I can to get a handle on the rectal pain, I responded.
I was proud of myself but a little self-conscious and in need of a reward, a badge of some sort – a purple heart? Something more than food.
“You know,” I continued, “ I have experimented with just about every remedy there is out there from orthodox to alternative. And after years of chronic pain there is still no peace, and I remain in relatively good spirits.
She is listening.
I could make a good case for a man in my position. After years of effort with no significant change and little to show, a man could go off without warning. I could hear the story on the radio. Man goes out to the Mall with a cache of artillery and opens fire on an unsuspecting public. Police are investigating the cause. The scene is totally pedestrian, totally mainstream, and totally American.
I continue: Since you would have the car at work I will have to rely on the Harley, my ammunition will be divided between saddlebags and a backpack. Reader, you already have a new twist to the narrative: man, motorbike, and semi automatic rifle. Before the investigation takes wing you already know the story.
The media profile would first list the maladies, intersected with interviews of our neighbors dovetailed with samples of my work and a bit of international history. Then later that night the updated installment would include sound bites from old friends in the Hudson Basin region. One of them would be sure to say – “This is no ordinary man gone mad, stage four cancer – you are talking dead man walking.”
Wife, you would be left out of the interviews-naturally. Better the neighbors than the wife. Neighbors might reveal some surprising tidbits.
Knowing that no such thing would happen she looked at me with a toothy grin and said: You are a funny man.
By the time we finished our morning ritual I was no further ahead. I had made my case for support and that was that. No reward. No certificate of sanity under strained conditions, no star to pin on my morning shirt. I was a man with a pain in the ass and that was all. As long as I had not become “a pain in the ass” to myself , all was well with the world.
We can agree that no one really wants to hear about another person’s suffering. To be fair it’s understandable. Day one, you can get away with a headache, or, “Honey I stumped my toe on the bedpost,” but beyond that you are on thin ice-no takers.
Chronic pain is a terribly depressing affair and since one can do very little to change the course of events , who wants to hear! When we ask our partners how are you, all we want to hear is “Fine.”
It is in part for this reason, among other considerations, that I have stopped writing the cancer chronicles with any frequency. I have shifted my gaze from a focus of fighting cancer, to living with cancer, a quantum leap. A conscious fight with the demon keeps it front and center to the living experience. And therefore exploiting critical energy that could be otherwise engaged. Hence, I am out of the ring and reflecting on the life-scape, looking inside and out at once.
In doing so, I have made several instructive observations.
As long as I was busy in the studio creating new work the pain was reduced to background noise. I could be working on a musical composition, a new drawing, installation, or simply rehearsing the roycrosse quintet. In all cases the creative process had a compelling punch. New and exciting work engaged the intellect, fed the spirit ,and reduced pain – – -what a revelation.
Conversely, when I retired for the day, when I had put my tools away, put my head down and the machinations of my brain were put to rest, the pain returned with a vengeance. Hence, a goodnight’s sleep has become a mythological construct. You might call it a self styled pain with its own rites of passage. It has occurred to me that the puzzle of sleep and pain might be resolved with an equally creative invocation. But, by the time I am ready to rest , that investment is already spent…what’s a man to do!
In a recent article on pain (AARP Aug/Sept issue) the famous Dr. Mehmet Oz talks about “a more complex but little understood cause, one that’s tied to how the brain processes pain signals. With long exposure to pain, nerves may actually hard-wire that pain into a kind of neurological memory, so even when the source of the pain is gone, you still hurt.”
It is also noteworthy that positive thinking can enhance the body’s tolerance for pain. In simple terms, if you cannot get rid of pain, you can notch upwards your body’s capacity to bear it out. The combination of these two coping techniques can and will increase one’s pain threshold, so that pain that was unbearable a year ago can now be tolerated as long as one remains active and mentally stimulated. You can avoid the temptation to jump out the window…or go to the Mall (loaded).
We assumed that my rectal pain is directly related to the status of the colorectal cancer- a reasonable assumption. Meanwhile, the lower extremities and parts related to the sternum which have been compromised, have taken on new and mysterious ways to issue random pain episodes. Sometimes this occurs at the expense of days and nights without productive work or sleep.
But clear and distinct links and the relationship between all the players have yet to be established. It will be some time again, I imagine, before I can get a measurable handle on the cause and geography of pain. The most recent scans – two months ago- say it’s not getting better. One oncologist says: I am surprised you can breathe. It has spread to your lungs.
Well I am breathing easily, living vigorously and I am not going to the Mall.
August 31, 2012