"You are NEXT!" - Facing another Opponent

PATIENT NOTE : "When will this all be over?", "How will I know if the treatment is working?", "What do I do in the mean time?" These are but a few of the thousand questions that patients face - particularly those of us 'fortunate' enough to have dealt with a cancer battle more than once. Being a survivor is harder that it looks - especially when many of us (thanks in great part to better treatment) don't LOOK like we are SUFFERING from cancer. For me, besides weight loss in post-surgical recovery (not a recommenced weight loss plan by the way!) I don't look sick. I still have my hair, I am not running to the bathroom to barf my guts out. I don't collapse in public from exhaustion (at home is another thing though) I don't have the skeletal-pasty look that we see in so many movies. NOW however, I feel 'included' in the suffering. The current treatment I am on is called Erbitux - and it's main side affect is acne!!! Wee!! Yeah!!! Like being a teenager all over again. But, here in lies the interesting quirk of many cancer therapies, the 'expression of acne' as the doctors call it is a GOOD thing (???). Evidently this tells the doctors that the treatment is working - how the hell they determine that, I have yet to discover - it will require more internet searching on my part. The real challenge is that every so often on this treatment journey (mine is coming up on a full year, if you include my first surgery) is that we patients who are lucky enough to NOT be plagued by debilitating side effects slide back into our regular routines of family, work, friends, socializing and the like - with only minor punctuations of therapy and doctor visits. This is the danger - letting down the guard. It can be dangerous.
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Being a martial arts fan, I watch a lot of movies. True, not many are 'Oscar Worthy' but most have good messages if you watch them. One of my favorites is 'Blood Sport' - starring Jean-Claude Van Damme playing the fighter Frank Dux. Watching this movie with cancer in mind, it says a lot to me. Relax, and go with me... O.K....

Fighting cancer or fighting an opponent in a ring are very similar. I have used the Rocky metaphor before in my blog, but this 'fight-story' is a bit different, a bit more specific to what those of us who fight cancer on multiple fronts, or fight cancers that have morphed, moved, or changed just when we think we have them beat.

In the movie, my hero, Frank Dux is in a tournament - a secret tournament - much like my experience as a cancer patient. While in the movie most of Hong Kong 'knows' about the tournament, no one but the fighters, their seconds and those betting on the event actually know where it is, how it works  - or that occasionally some of the fights end up in death.

For cancer patients it is the same. Yes, sure, we all know people who have had cancer - some have lived some have died. The public sees the parades, the various colored ribbons, the fundraisers, but what they do NOT see is the 'preparation' involved in getting ready to step into the ring and swap punches, kicks and gouges with the 'enemy'. Sorry, but unless you are in the arena, smell the sweat, taste the blood, breathe hard in your corner, and keep coming back you just don't get it.

Now, for those of us who have been 'fortunate' enough to deal with cancer more than once, our lives become like that of Frank Dux in the movie. Each time he steps into the ring, he faces a different opponent - this is my favorite part of the movie - Frank is forced to adapt to each style of fighter, forced to instantaneously recognize the approach, the techniques attacks and defenses he must adapt to in order to make it out of that fight.

Dealing with multiple cancers is JUST like that. For me, the first time around (20 years ago) the battle was fairly simple - warm up, get in the ring, exchange a few punches and kicks, take a few shots to the groin, but in the end I landed a knock out blow, and in effect went into 'retirement' I felt like a champion. I had won the battle.

However, or But, or wait a minute - there always seems to be some caveat to these stories. After having forgotten about the battle - I had been busy living, working, raising kids and all the other stuff required of life that I got lazy and all of a sudden I found my self, facing a new opponent, this one - like the character of Chong Li in the movie, a mountainous, steroid hyped mountain of a fighter, glaring at me from the ring, pointing his finger at me, proudly announcing that "You....are....next!!!" after watching him kill another fighter who he had at his mercy. You could see the 'fear' in Van Damme in his role of Dux, and had you been in the room with me when the doctor brought the second diagnosis to me, you would have seen the same expression on my face, I am sure.

This second time around, was much worse than the first. It required major surgery, long and painful. Recovery at home, long and painful, fraught with challenges - physical, mental, psychological. It was months before I was healed up and ready to face the new challenger in the ring.

If my live were the movie, this is where the 'montage' would be - in case you didn't realize there MUST be a montage of 'training-footage', accompanied by a kitchy-song which illustrates how the fighter gets prepared for his upcoming battle, and 'Blood Sport' is no different. The Dux montage follows him from childhood through adult-hood mastering all the teachings along the way, gaining the skills he will have to draw upon to do-battle with his opponents.

For me, the training montage would not be near as dramatic. Instead of pumping weights, sparring, catching fish with my bare hands and otherwise turning my body into a perfect physical specimen for fighting, I spent my time drinking protein shakes, eating healthy, sleeping alot, wandering around my house looking for things to do... watching television, reading about my condition on the internet... Not exactly movie-material, but it was how I got ready.

Like the character of Dux, I took on my new opponent with the help of Oxaliplatin, Xeloda and Radiation Therapy. The real challenge in 'filming' this battle is that were it a real movie, the screen would be blank...because the battle goes on internally, microscopically where no one can see the actual fight... and THAT is the challenge.

This part of the battle is much like the scenes where Dux is blindfolded by his master and forced to fight without the advantage of seeing where or how the next attack will come from - the same goes for the cancer patient. All I can do is sit in my treatment chair and take my next dose 'blind-folded' hoping that it works. The big difference for me is that so much of this most recent battle HAS been conducted behind the blindfold - I cannot SEE what works and what doesn't. All I can do is keep swinging and kicking, hoping to hit the target.

Back to the movie, the tension builds as one by one Dux defeats his opponent, leading (of course) to the big show down between he and Chong Li, and that is where I am now. Preparing for the next battle. Along the way, Dux watches his friend Jackson take on Chong Li. During Jackson's fight he thinks he has K.O'd the bigger, favored champion and runs around the ring celebrating, unbeknownst to him Chong Li (like cancer) gets back up and attacks Jackson again from behind, nearly killing him.

Dux watches his friend nearly die, and like all good friends, vows revenge. In my case, I have had to watch several family memberes be defeated by cancer, and understand the pain of Dux and the desire to win the battle for myself.

So, here I am again, thinking I am done fighting, the score card is snapped into place like in the movie: "Scott Lightfoot" vs. "Metastatic Colon Cancer". I step into the ring face off my against my own Chong Li and start trading punches.

Unlike the movie, where you can predict the obvious end, mine is not so certain. I am only a couple rounds into the fight. I FEEL like I am winning, but as before the interanl blind-folds are in full effect. I take my treatments, continue to do my 'montage-training-regimine' and we will see what we see.

The thing that really gives me hope is that in my 'treatment-corner' I not only have modern medicine, great doctors, a good team of treatment staff and the like. I am blessed with a wonderful wife - always there encouraging me to fight to not give up, to take care of my self. I also have my boys in my corner who want to see me win, and my cadre of friends and other relatives watching from their own 'support-television' sets as I continue to lay punches and kicks on my opponent....

Walls, Doors & The Journey Forward

PATIENT NOTE : Over the past year, I have spent an inordinate amount of time, as a patient, as one whose world has been turned upside down by this cancer experience - multiple experiences - reflecting most often on the negative aspects of this process. Yes, it is awful. Yes, it is painful. Yes, it is paralyzing. However, I have discovered that dealing with nothing but the negative - without including those closest to me is often even more damaging. It is SO vital that patients know just how important TALKING is. I am not referring to the medical chit-chat between patient and doctor, or patient and treatment nurse, etc. but rather to open hearted conversations with those who STILL love us - despite what we as patients think. Living in 'our' bubble, trying to reduce the pain and suffering of our 'people' just doesn't work. THEY need us to know that our struggle is also theirs, and that they can only help if we ASK, and TELL them our fears and HOPE. This post will focus on looking forward. While scary, yes, and uncertain, there is still much I hope to do, live and experience along the way.

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WALLS : I want to start by first apologizing to MY people for building walls from inside my self and shutting them out on so many levels. Despite what I have written in the past, I have NOT always dealt with this process in the most healthy of ways. Fear, depression, unhappiness and selfishness can lead to so many stupid decisions that a wall gets built that has no doors... none to let me 'out', or to let others 'in'. My wall has often be 'decorated' with things that make it seem like I am doing fine, handling things well on my own, being strong and not needing help along the way -- nothing could be further from the truth. I NEED MY PEOPLE!! Starting at home, with my wife - who I have not given enough credit to along the way - for ALWAYS being there for me. Holding my hand, sharing tears of fear, sitting for hours at my hospital bedside. Always there. Then there is our oldest son. A wonderful, mature young man who, is an amazing listener and makes me proud every day. And, our youngest son, who despite all the faults I see in myself, he sees nothing but 'the best Dad in the world' - a title I don't often feel deserving of, but that is how he sees me, and I love him for it. Lastly, in our home are the 'non-human' family. The dogs and cats. Creatures that have nothing but love for their 'people' despite all the turmoil going on around them. Outside of my home, I am so fortunate to have a network of family and friends that are, again, in my opinion - way more supportive and caring than I fell deserving of. I cannot count the times when a kind word, text, Facebook post, gift in the mail or chat has kept me from giving up. Thank you everyone.

DOORS:  Recently, I have been reminded that walls are o.k. on some levels... There are things I don't HAVE to share with everyone, but without doors, I cannot LIVE. I can exist, but that is not the same thing. Without doors to let me 'out' of myself and let others 'in' I am doomed to simply wait for the end. I am convinced more than ever, that I want that end to be a long, long time from now, and in order to do that, I need to get healthy - medically as well as emotionally, and I can do NEITHER without those who I love and care for and those that love and care for me. I simply have to say "Here I am. I need you."

So, what things, given all else, do I look forward to as I keep on living. Amazingly, most of them are simple, common everyday things that we so often overlook. The list cold be impossibly long, so I will try to keep them to a 'Top 10' -- keeping in mind no particular order, and that there are many others. Here we go.

Scott's Top Ten List:
1) Snuggling with my wife.
2) A fresh blanket of snow and a sunny morning.
3) The sound and smell of a fresh pot of coffee brewing.
4) Conversations with Cameron about his career.
5) Watching and laughing at really bad sci-fi movies with Malcolm.
6) Georgia stealing pencils from my art box, and chasing peanuts around my studio.
7) Cooking amazing yummy things for my family and friends.
8) Working on my house and growing things in my yard.
9) Creating art to really loud music in my studio.
10) Being able to be a good listener and a good friend to my best buds.

THE JOURNEY FORWARD : I also look forward to many more years of putting together art shows with Everett, sharing our local artists work with the world. I really look forward to seeing my own work get better and get to the point where I can make a living creating things that make people smile.

I can't wait to see what my kids, my nieces and nephews and all my 'adopted-artistic-kids' do. I look forward to gallery openings, concerts, stage shows and being the proud parent in the audience, proud of all they do.

I look forward to graduations, college visits, apartment moves (as kids grow and move on). I look forward to weddings, and yes, even to adding the title of 'Grand' in front of 'Father' at some point. I look forward to introducing grandkids to art, music, cooking and being happy.

I look forward to sharing my experience with new artists,  young and old, when ever I get the chance.

I look forward to discovering new art, new music, new friends.

I look forward to the journey - the ups and the downs - knowing that I will have my people with me.

FINAL THOUGHT FOR THE MORNING: Walls protect us from the storms of life. Doors that open both ways let in friends and let us out to live in the world. But living only begins when you take someone's hand and walk down the path - together. 

The Destructive Stew : Toss In Cancer, Fear & Depression

PATIENT NOTE: Within the world of those with a terminal illness, the things that go on inside our heads are often times inexplicable. The time spent sitting around doing nothing - when we used to be able to have jobs, go about 'normal' activities and the like can be severely restricted. All this sitting around, staring at walls while recovering, worrying about the future - our own and that of our families, make for horrible holes in our psyche that get filled with all kinds of different scenarios. What happens? Fear, loneliness and depression fill those holes and can lead us to say and do ridiculous, mean and even hurtful things to those closest to us. While the treatment we get - medically through chemotherapy, radiation and surgery are obviously important to our recovery and survival, I think that psychological help - though offered by care teams - is very under-valued and under utilized by patients and families. I really think that psychological counseling should be as prescribed as pain killers, or anti-nausea medication, for the overall well being of patients and their families. I WILL be addressing this with my doctors as I get ready to start my next round of chemotherapy.

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One of the things I enjoy is cooking. Cooking allows me to put good work into something - preparation, ingredients, special care, etc. Then to serve it up to hungry people who return to me looks of enjoyment which is all I ever ask for.

Sometimes, no matter what you seem to do though, there are occasions when something goes, horribly, horribly wrong. Relationships can be like that, especially ones complicated by a host of issues. Just as in coooking some you control as a chef, some you can't. Sometime you are short of something, sometimes the flame is impossible to regulate, sometimes you put in too much or too little of an ingredient, and some times there is a mistake in the recipe to begin with. Relationships are like that, an often delicate balance of things you CAN control and things you CAN'T. The success of the 'dish' is the result of that balance. And, like any adventure in the kitchen, if you don't pay attention to all the details, you will be left with a pot of dreck. 

So, currently I have made a bad, bad concoction that needs serious attention. In order to salvage the meal.

I call it the 'Self-Destruction Stew'.

Where the 'recipe' went wrong exactly, is hard to pin down, but I know for certain that many things have contributed to this mental-psychological-culinary disaster along the way. The pot has been simmering poorly tended for far too long. 

Looking back at my poorly imagined recipe I see there are some things that got tossed into the pot, some of which I could not control, some of which I could and some just happened to show up in there as if evil gremlin line-cooks had been tossing things in behind my back.

Bad ingredient #1: Personal 'Soup Stock''.  Like most stocks, they are not bad, but need ingredients to make the meal complete. To me ones stock consists of the baggage of a lifetime that we bring into every relationship. In my case I was raised to be a self-sufficient person who can get through anything with little outside help. "Do it yourself!", "Deal with it!", "Suck it up!", "Be a man - rub some dirt in it!", "Don't by ANY MEANS let anyone see your weaknesses!" So as a result I have ended up a rather stubborn, opinionated man, just certain that he has all the answers, and don't need ANY help 'fixing' things along the way. There are MANY problems with the results of this approach. Over the years it has made it VERY hard if not near impossible to really let people in and almost as importantly for me to let out what I feel, even to those closest to me. 

Bad ingredient #2: Rotten Spots - Complacency and Neglect. Have you ever grabbed, say a tomato from the vine and noticed that it has a couple of 'bad-spots', and just thought, "What the heck. I can 'cook them out'. It's a big pot, what could happen?" Well that is what has happened to me with several relationships. Rather than do the hard, extra work of dealing with the bad spots - cutting the out carefully, washing every thing properly before cooking, many times I have held them up, turned the bad spot so I cannot see (deal) with it and then just tossed them into the pot forgetting how ugly and moldy and rotten they became. This could have been avoided had the pig-headed stubbornness of my 'stock' not caused me to 'clam-up' (pun intended).

Bad ingredient #3: Job Loss. - The first of the uncontrollable ingredients thrown into the pot while I was not paying attention. While the bad pot has been stewing for years, some Gremlin-Cook tossed in first one job loss (folowed by a 10 month stretch of unemployment) then after finally finding another job that I held for a bit more than a year, a second job loss was thrown into the mix. Again, I should have been watching the pot - after a year though I though things were 'cooking along just fine' the aroma from the pot was just starting to make the kitchen smell good again.

Bad ingredient #4: Colon Cancer (the most recent one) - The second of the uncontrollables  - this second battle was much worse than the first one I experienced almost 20 years ago. This one ended up costing me my colon (and part of my dignity), left me hospitalized for many days, then left me, alone, at home, staring at the walls, watching too much television, watching the lives of people around me go on in their day to day routine, avoiding me, and I began to sink. This is where things began going from bad to worse in the stew. As any chef will tell you there are key points during the cooking of a meal, when if you are not paying attention, things can go really bad - milk can curdle, butter can separate, meat can burn, etc. 

I clearly was NOT paying attention. As I dealt with this new cancer neglect of the 'cooking process' - the sampling, the adjusting, the taste tests that all good chefs use to monitor the progress of the dish, I stopped doing. In the case of relationships this is when things went most off track. I stopped talking to those closest to me. I stopped sharing what my feelings (as always) and for some reason I put the lid on the pot, set the spoon down, left the kitchen and allowed myself to enter the long journey of fear and depression. 

Neglected, eventually, the dish begins to burn and smoke will rise from the kitchen, bringing attention to the disaster building on the stove. By the time I realized the kitchen of my life was filled with smoke, ran to the pot and lifted the lid it finally blew up in my face. The stench of negligence.

I stood there, looking at the mess I had made, all this time thinking that things in my life were cooking along fine, they were not. I had assumed that everything was o.k. and things were moving on. I ACTUALLY thought - again for reasons I don't understand - that they were getting BETTER by me not 'putzkying with the pot'.

At this point, with the dish most likely ruined, most chefs would chuck the whole thing pot and all, and try to make something completely new. However, the perpetual 'fixer' that lives in my broth had me convinced I could fix things all by my self. So once again, instead of asking another 'chef' (friend, family member - hell it could have been anyone) for help, I forged on ahead, by my self, and all I did was make things worse. By the time I got the lid off, turned down the burner, and started stirring the mess, I could tell that there was all kinds of stuff burned, maybe permanently on the bottom of the pot.

Bad Ingredients #5: Fear. All chefs, at some point have burned something on the bottom of a pot. It happens. With me, the FEAR of what was burned, and what might happen if I dumped the pot and really looked at it was devastating. I KNEW there were problems. I knew there were issues within my relationships with those around me and yet, as always, I was sure they would just go away, or 'blend-in' to the stew. So, instead of starting over when I could, I dumbly just kept stirring and scraping, stirring and scraping just SURE that all this stuff would 'blend' into the meal. Within my relationships I simply stopped talking, when I should have been letting people know what was going on in my head. Then, the Cooking-Gremlins returned to plop in another foul addition to the stew, when I was frantically worrying about how to deal with the gunk building up on the bottom of the pot.

Bad Ingredient #6: Cancer. Yes, another one. This time, seemingly more serious and with more lethal possibilities than the one I just spent eight months beating back. Again, I took the news - all manly like - plunked it in the pot with the stirred up charred scrapings of the now foul smelling stew, put the lid on even tighter sealing in the pain, mental, emotional and psychological, anguish and walked away. I was done.  All this did was make the smoldering pot explode, all over every thing in my life.

So, I run back into the kitchen - ever the fixer - grab a fire extinguisher and attempt to put out all the flames that the over-boiled pot had produced. So, now I sit, in the smoldering kitchen that is my life, trying to figure out where to start cleaning up. Everything I did along the way, has left the world around me a mess, covered with the soot of sadness, the crusty bits of what 'might-have-been'. Had I been paying better attention to my cooking, asked for help when I saw disaster brewing, things might have turned out different.

Now, I stand now at the sink, scraping the bottom of the pan, trying to recover what might be salvageable from the disastrous, 'Destructive Stew'. As I stand here, scraping the pan, wiping up the mess, I realize that  once again, in an evidently repeating pattern, I seized up, gave up, figured there was no purpose bothering anymore - since I wasn't going to survive this battle -  that the 'dish' of my life had simply been ruined -  rendered unfit for serving, so why bother trying. 

I took a look in the 'dining room of my life' and saw that, from my perspective anyway, all my guests (family, friends, loved ones) had run from the smoke filled situation and were heading their own seperate ways, not needing me any more, and most CERTAINLY not wanting to eat what I had been dishing out all these years. So, it has been very hard for me to believe that I CAN clean things up, make things right (with NEW help that I will be getting)  and bring them back to the table of my life at some point, to once again enjoy my cooking -- cooking that I will CAREFULLY prepare, watch DILIGENTLY and put in all the love possible to make things more palatable than they have been.

EPICURIOUS EPILOGUE: This is to ALL those dealing with terminal illness, while your body fights the disease with the help of medical treatment, your mind gets very little help along the way. Get HELP. Talk to your loved ones, talk to your doctors and nurses. This is VITAL. No matter how scarred, depressed or lonely you get along the way, don't forget (like I did) that people outside your immediate bubble of experience DO CARE.... But THEY can't read YOUR mind. YOU have to ask for help. It's the only way to get through this. Take time to realize that making a fantastic recipe (getting you healthy) takes a hell of a lot of team work, and you simply CAN'T do it on your own, hoping to 'winging-it' with no plan, by neglecting the 'ingredients', ignoring the 'process' and not giving the attention required along the way to end up with a meal fit to serve. For me,  all I can hope is that through enough 'mental-psychological' elbow grease that I can restore the pot, clean the kitchen, and get back to cooking up better food for the rest of my life.

"Well! Come...On....Down...!!! You're our NEXT contestant!"

PATIENT NOTE: I really don't know whether to call this my 'third-battle' or 'battle 2-b', but since, I guess it is the same cancer (metastasized) to a new location, I will stay with 'SecondBattle'. One of the weird things, this time around is that I have actually been given some 'survivability-numbers' (30% chance of making it 5 more years), and when the Doctors and Nurses broke the news, I did notice a faintest bit of 'concern' in their otherwise practiced faces - you know - the faces doctors get when they give you bad news - the face they perfect during their 5th  year of residency... "Must keep the patient calm, must be supportive - be ready with the tissue box or the caring hug." This is not a bad thing. I would rather have a treatment team who recognizes the gravity of the situation, but is also hell-bent on getting the patient PAST the typical indicators for a condition.  This, is their goal, and I could also tell it was as important to them as it is to me... after all, they don't want to be known as the group that loses to many patients, right! So I have once again been winding my way through all the ups and downs that I have mentioned in my many posts in this blog, so I won't recount them.
But I will say there is a strange comfort in the knowing of what is (most likely) to come with treatment and how it will affect me. I'm not scared now of the treatment or even the disease, my fears lie with dealing with things AFTER I beat this cancer, again. One constant that I am getting a bit more used to is the simple fact that I am living in a world of undefined time and space. A personal world created by the vacuum of being on disability (no job) and on treatment (undefined schedule) - a world in which hours, minutes, days and weeks just drift by, and in the many hours of 'drifting' strange things spin in and out of my head.
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A few days ago, a week or two after my liver biopsy, I decided to walk the dogs around the neighborhood, one at a time. I figured the exercise would do them some good, and give me a sense of how I was healing up. Well, after 2 walks and nearly 4 miles total, THEY were ready for more play in the back yard, and I was ready for a nap! So, I unleashed them on the bird and squirrel population in the back yard, while I went back inside, popped a couple vicodin (my incision was very ouchy) washed them down with some coffee, plopped down in my chair and clicked on the TV. I will just say that after spending the better part of the last two years at home during the day while the rest of the world worked, I  have a complete understanding of how bat-shit crazy women (mostly) got duing the 'old-days' when few worked outside the home... Despite nearly a gazillion TV channels, I could find nothing to watch and ended up drifting off during a game-show....

Suddenly, I hear a voice... "Scott Lightfoot! Scott Lightfoot of Toledo, Ohio!!!! Come...On...Down!!!"
I snap to conciousness, 'What? Where?' - I'm not in my living room, I'm in a studio audience somewhere.
The voice from somewhere blares out, "You're our NEXT contestant on Terminal Illness Today!!"

I try to pretend that the spotlight is not on me, and turn away to get the hell out of there, when two strong men grab me by he arms and take me to the front of the auditorium. Instead of podiums, like you'd expect they toss me on a hospital bed, jam in an IV, hook up the EKG, and give me a sedative - my legs and arms don't work.

Taking a look around, to my left I see an older man, who looks barely awake, and to my right I see a frightened girl of about 10 years old, looking confused and clutching a sock monkey. All I can say to my self is, 'What the HELL?'

The stage is lit with those glaring medical overhead exam lights and on the stage are three large doors, a smooth ramp leads from where our hospital beds are up a ramp with a carpeted path branching off to each of the doors.

From the right side of the stage bounds a tall, lanky man dressed in a white lab coat, a stethoscope around his neck, carrying a clip board, and on his head, instead of one of those reflector things he has one of those spiraling-spinning discs that people use to hypnotize you. There is a huge roar of applause from behind us as he comes to a rest, center stage...

He saunters like some sort of runway-model down the ramp and comes to MY bed... Moves to the right, puts his icy cold hand on my wrist, sticks the microphone in my face and says, "So.... Mr. Lightfoot. Are ya excited to be here? Are ya? Huh? Are  ya?"

I try to move my arm away, but can't, I want to say, "Hell no, you weird son-of-a-bitch!" but all that comes out through my anesthesia addled lips is, "Hello you were a sandwich!"

"Well, isn't that special! Someone must not have had his lunch today!" Dr. Strangelove is on to the old man next to me, asks the same stupid question, the old guy just moans. Now he passes me, tussles my hair as he does (I want to punch him, but can't move) and goes over to the little girl. He calls her 'Betty' and asks her how she is doing. She cries, says she wants to go home and he just giggles and moves back to the stage.

Under the spotlight, Dr. Strangelove does some sort of bow, curtsy spin thing and announces, "O.K. Contestants. Behind each door is a room in which you will spend then next several months being treated for your illness."

"But, before we must determine which horrible, possibly disfiguring, most likely life-style changing disease you GET to HAVE....Isn't this EXCITING!!!!!!"

He moves stage left as he gestures across the stage, "So....Here...We...Go......"

From the right side of the stage a huge spinning wheel emerges, pushed center stage by two hot nurses wearing high boots and short skirts. Suddenly, I think, 'Hey, maybe this is not too bad.' but when I try to move to get a better look as they leave, I realize I'm paralyzed and think, 'Damn, no....it IS bad.'

As the wheel is placed and Dr. Strangelove drones on and on about the rules, I notice the spaces. Some have my name, some say 'Betty' and some say 'William' (I am guessing that is the moaning old-guy). I also notice some say BANKRUPT, some have skulls and crossed bones, some say CHEMO, RADIATION and SURGERY. I also notice two slim spaces among what must be 100 on the wheel that say REMISSION and CURE.

Dr. Strangelove does his ramp-saunter and makes his way to Betty's bed and hands her a controller, "O.K. Betty, since you are our youngest contestant, you go first." The crowd applauds.

She gets ready to push the button, but Dr. Strangelove grabs the controller, "Not so fast there kiddo. Let's remind the audience of the rules of the game!"

"The object of the game is to spin the wheel and land on your own name! Beneath your name is you condition and then you get to pick a treatment option door, remember, choose wisely, there is no going back.!" The crowd murmurs.

He continues, "IF a contestant spins and lands on a penalty space, there is no second spin, you are on  your own." The crowd boos.

"Finally, if you land on the space of another CONTESTANT you can either send that person through a door of your choosing.....or take a chance at another SPIN...." He finishes, putting the controller back in Betty's hand.

Weakly, she presses the red button, and the wheel spins. Lights flash, the flapper on the wheel, makes the ever slowing slapping sound on the pins of the wheel..... It slows. It slows. Passes Bankrupt, passes my name, passes William, passes the Skull & Cross bones, passes my name again, and comes to rest on the light blue 'REMISSION' space.

Betty looks excited. Her parents, seated behind her, look somewhat relieved, but in an odd way Dr. Strangelove looks almost disappointed. The audience claps - though half-heartedly.

"Well, well, well! Little Betty, lets look under the space." One of the nurses emerges from behind the wheel, pulls the space marker and reveals, 'LYMPHOMA'.

"Wow, Betty. It looks like you get to go home today. Be a good girl, follow doctors orders and, if you're lucky, you MAY get to come back and play again..." he gives Betty, her family and the audience a knowing wink... Betty's parents rush her out of the auditorium.

Thinking that I will be next to spin, I try to sit up in the bed, so I don't look like such a pathetic weakling, when Dr. Strangelove moves past me to William.

"Today, audience we have a special treat for William. William has been a contestant on the show now for almost a year! Quite a long time I might add... He has been a fighter, but the producers think it's time for him to move on."

As he is speaking the nurses trot back out on the stage (O.K. despite it all I must say, I like it when the nurses trot. I'm sick, not dead.) and they spin the wheel around to reveal the back side that  has only four sections. Two white, and two black. The white ones say 'REMISSION' and have a picture of William and what appears to be his grand children, and the black ones simply have at tombstone - no explanation needed.

Back at Williams bed-side another nurse appears and injects something into Williams IV. He stirs and the nurse raises the bed. Dr. Strangelove brings the button to his side. "O.K. William, one last spin. It's been great having you on the show."

I watch as he weakly raises his arm and sets it down on the button. The wheel spins, spins, spins, then begins its slow down; black, white, black, white...black...white...black......white............black, and stops.

The audience lets out a long sad sigh. I think I hear William start to cry softly.

Dr. Strangelove moves to behind William and escorts what must be his daughter and her family to his side' "Well, William fought a long and hard battle. We are all sad to see him go, but his time has come."

As the family wheels Williams now breathless body out of the auditorium, he says, "The family wishes to thank all the friends and loved ones who have helped them along the way.

I suddenly feel very, very alone.

When I refocus on the stage the wheel has been refitted and both Betty and Williams names have been replaced with 'Metastasis' and 'Benign'.

Dr. Strangelove moves to me now. "Well, here we are Scott. May I call you Scott? Your turn to spin the wheel. But before we do, let's remind our studio audience  how you got here."

A screen lowers down and some images start to flash, the announcer voices over. "20  years ago Scott was diagnosed with a cancerous polyp. It was removed and he was treated with chemotherapy and radiaton."

I am sitting there thinking, 'I don't remember them taking all these pictures back then??'

"He spent the next 20 years building a family. He and his wife raising two wonderful boys.." more pictures.

The Announcer continues, "Then as fate would have it he was diagnosed with a second cancer, this one more severe, requiring the removal of his colon, more radiation and more chemotherapy." more pictures from the last few  years.

Again, I think, "Have 'they' been following me? How did they get THOSE pictures?"

"That brings us up to day, Doctor. Now he's ready for his next spin....."

The audience claps...

"Alright, Scott. You know what to do. Push the button and let's see what happens...."

Why is this guy so damned excited? I know, because it is not HIM spinning for HIS life...

I have no choice, so I push the button.

Spin, spin, whir, whir, spin.....spin....spin....click.....click........click........click... stop.

"Ohhhhh, Scott. It seems you have landed on 'Metastasis'. That's a rough one."

All I can think is, "FUCK, not again. I never ASKED to be on this stupid show."

Sensing my disappointment, Dr. Strangelove pats me on the shoulder and pushes my bed up the ramp.

"The good news is you get to pick the door to your future.... There are three doors. One door will allow you to go into Remission, with reccurrance somewhere down the line, one door leads to death due to treatment failure, and one door leads to cure, allowing you to live a long and healthy life."

The Doctor unhooks the IV, a nurse bandages my arm and winks at me and removes the hospital bed.

The Doctor turns me towards the audience and announces.... "Well, Audience...which door should he choose?"

There is mixed applause, shouts of "TWO", "ONE", "No, pick THREE", some where I hear a door slam, then I hear dogs barking, I hear my kids voice? My kids voice?

"Dad! Dad! Are you even awake? God...." he laughs, "You MUST be bored, watching the Price is Right!"

I wake up, shake off the dream, he gives me a high five and says, "I gotta go call Mom, let her know I'm home."

Understanding 'Uncle Jack' (from Dancing at Lughnasa)

PATIENT NOTE: One would think that this being my second (well, third really) battle with a critical illness that I would be an expert in all things related to being a patient, that I would have all the answers and this experience would be a breeze, right? WRONG? With each occurrence it should get easier, it should be more understandable and should be less draining. Hell, by this point I should be able to handle ANYTHING, right? Wrong again. While it is true that some things have mastered - never expecting an appointment to be on time, learning how to find the best places in each lobby to take a nap in the sun, knowing which facilities have the best 'vending machine coffee' (blech!), knowing which valets who will park my car and which ones make me do it myself. These are the easy things.

The hard things still exist; explaining all the NEW drugs to people over and over (I think I should design an 'update' card - print them and hand them out at key points in treatment ---- hmmmm possible business venture?), begging time off from employers (if I have one), filling out all the paperwork for Social Security Disability (since I am being told I cannot work during treatment), discovering a complete absence of all of the following; life insurance, funeral service contracts, a hole to put me in, a will...etc, all that 'grown-up' stuff we never seem to think about until it suddenly becomes important. What I would like to examine today is one of those special things that goes through my head at various points along this journey.... 'The Critical-Illness Time Warp"...

_____________________

While the easiest method on which to build this analogy would be to wrap it around a science fiction story, but, while out in the studio trying to figure out how to get the new kitten down out of the rafters of the garage, it stuck me that a better way to look at this from within the context of the play, 'Dancing at Lughnasa'. "Whaaaaaaaat?" You may be asking  yourself. Bear with me and it will become clear...

A quick theatrical summary. The play is set in Ireland and deals with a family that is being fractured, internally and externally by forces they have very little control over, and, as we all are, forced to deal with them the best we know  how.

Though I am not a 'theatre-person' per se, my oldest had a lead in this play (it was also made into a movie with Meryl Streep), so I had the chance to sit through several rehearsals performances and as I was teetering on the chair in my studio, cat in hand, the parallels just came to me.

While the main dynamic and plot of the play deals with a family of divorced, widowed and unwed sisters trying to make ends meet, trying to raise Michael - son of one of the unwed sisters, and to care for (here comes the connection) their 'Uncle Jack' who was a missionary returned from a journey of several years to Africa - where the customs and people are strange.

As a cancer patient I often times feel like Jack (played by Austin Bertok, of TSA). He is a very excitable person, who can't sit still, seems to mumble on and on (to the distraction of his neices) about places and people and events that only HE has witnessed and truly understands. The sisters (analogous to my friends and family) all seem rather bored with his 'stories' because there is so much going on in THEIR lives that poor Jack gets shuffled off to a corner chair by a window, or sent of to his room or, has a sweater tossed on his shoulders and he is sent on a walk, so he can babble to someone else....other than them. The more I thought about this the more accurate it became as a description of the life of a person with a life-threatening illness..

To those of you on the outside, this may seem trivial, or even over dramatic, but here it is. Cancer patients are sick. This does not mean we are dead, dying or moments from meeting our makers. We are also not (usually) as fragile as glass, oversensitive to music, conversation or television shows. We are also not (despite hair falling out sometimes) crumbling like zombies. We are still here, still members of families, we still (more than ever) need our friends and relatives to just help us be who we normally are - the good bad and the ugly.

Unfortunately, like Uncle Jack in the play, we get dismissed, waved off and ignored. I my case I notice this in the way my daily routine has changed. On top of being treated for cancer, which, as I have noticed in the past, has meant hospital stays, days of testing and hours of waiting room sitting, I have no job - I was laid off (conveniently?) by my employer right before I was start this current round of my battle. So my days have very little structure, and this is hard to handle at times.

In the 'before time' I had a purpose, I would get up, help get the kid ready for school, get myself ready for work and we would all head out the door and go off on our daily routines. This is very much like the lives the sisters live in the play, and we see these story lines develop through the youngest member (Michael - who was played by Cameron Lightfoot of TSA) who (like my youngest son, or others on the periphery of the cancer experience) really don't quite get the big picture.

As I watched the play and focused in on Jack, I realized that in a weird sort of way his life as a 'missionary' and mine as as 'cancer patient' were also similar in that for us, in those 'worlds' we found structure and meaning that don't exist in the 'regular world' anymore. It is very strange to say that some of the heartiest laughter, best friends and happiest times have been in the company of other patients and my medical team. This is NOT to lessen the importance and value of those friends who exist in the 'regular world' at all... by no means, it is just that the experiences on my 'journey' like those of Uncle Jack on his 'mission' are things that only 'we' can really understand.

On those mornings when I let the wheels of woe spin around my head as I sit, stuck, in my moping chair, I begin to look at my life and see this 'Time-Warp' happening, again, I may be over reacting, but from my position as a patient - who has been given a fairly shaky chance at a long life, I start to notice people and events pulling away from me.

If 'I' do not insist on it, my part in the morning rituals of getting up and getting going, are forgotten. No concern is given as to whether I even exist anymore. People dress, eat, pack for work and school, take care of the animals, get in the car and go to school and work. The end of the day is not much different. If I don't take it upon myself to be involved, life goes on without me - television shows are watched, homework is checked, household needs are taken care of -- all without me even being necessary. It is like I said in a previous post, a 'limbo-state'.

This feeling that time around me speeds ahead and time in my bubble drags on is very hard to break. Some days, I am legitimately tired. I get up, try to get the day going, sit down in the chair for a cup of coffee, then - with no pressure to really DO anything I fall a sleep, next thing I know 5 hours is gone, it's now 1 P.M. So I get up, tinker around the house so that I can say I did SOMETHING. I deal with some mail and some bills (seemingly  my only contribution anyhow) then it's time to pick up the kid from school, and on into the evening routine noted above.

Justifiably, I feel the same from my friends.... "Wow, you don't LOOK sick..." the next time I see them it is, "Are you SURE you have cancer? You still have your HAIR." I can tell by the look in their eyes that they (like most people to be sure) have the same preconceptions that cancer kills and that the next words out of my mouth will be describing my imminent doom. They don't expect to hear, "I'm fine, no really. I don't feel bad at all." What I want to add some times is, "Why, SHOULD I look like a half-dead corpse with one foot in the grave?" But that would be very mean, and unfair, since with rare exception the typical outsiders do really have good, caring  hearts.

So....back on stage, we can see that the dynamic between the characters in the play who are outside Jacks world is so preoccupying that Uncle Jacks' adventures are simply not that important to anyone really except him, so he totters on his way, enjoying his time 'home' but almost, but not quite reminiscing about another 'journey', back to the 'world' he had become so familiar with. A world that no matter how he tries to explain it's wonders, his family and friends will never fully understand...

I am not ready to return to that world. I am fighting hard to stay 'home' and to leave the cancer journey behind me......

"Are You Ready For Some FOOTBALL!!!!"

PATIENT NOTE: Once again I find my-self in a post-surgical, pre-therapy period, and stuck in a chair (at home much sooner than expetetd this time (more on tahat later). I've done this before....surguries, bipsies, waiting, healing is never much of a schedule change, it does how ever allow the mind to wander as I try to figure out how to approach the next phase of treatment. My condition had changed, according to one doctor for the worse, according to another just to more a more challenging effort. So how do I wrap my head around this news? As I settled in to watch a college bowl game it hit me -- a game plan, what I needed was a solid game plan, full of offesnive tricks, defensive strenth and special teams performance to coaching brilliance, kind of like MOST Steelers games and on RARE Occasions a Purdue game.
When most people wath a football game - even those that have PLAYED football, they really don't have a clue about what goes on in the pre-game preparation reqired before ball kicied off thee tee...Facing another treatment battle, I begain to consider my situation. I am a few weeks away from the play-offs and here is what I am faced with as a coach. My team has made it through a rough season, starting way back in March, when my whole team got hit wit a bad case of  'disase poisonin'. This devistated my team and delayed the start of spring training by several month.s

Whe spring finally broke the team Doctors had most of the key players taking snaps and learning the new play book. For the 'chemo-patient-team' these instructions come from the chemicals  that make up  the 'coachingstaff' who's job is to put the team together so that when the  players hit the field, they are ready for the battle.

In the biophysical world of game-prep, during the off-season the team owners (doctors) and scouts (researchers) always have their eys out for new and exciting players and coaches who can keep all the players on the field.

Now as a 'fan' (family and friends) of the 'team' (patient) what you DON'T see is all the worry... Despite the full stadium of supportive fans who send their care from all over the country, the bright shiny-objectivity in the 'game-face' of the coachiung staff, nor the fear-based sweat on the brow of the coach (patient) - which looks like the glimmer of 'confidence'...

Despite what you may hear or see from some of the 'media-outlets' that try to let the fans know the ''status" of the team, the ACTUAL state of the team is a carefully crafted statement released with juuuuuust enough information to get the point across to the people who are 'betting' on how the season is going. In the real world of football we FANS know that there is not a single coach that spills all it's teams. None of them say for 'certain' about which stats will 'start' which ones may 'play' and which ones will be on the bench.

In my world as cancer patient / coach. I constantly run this same batttle... Depeding on the closness of the 'circle' of friends, depends on which 'report'  I give. While, like great coaches, I donot lie, I don't always do s full reveal of the injuyry report.

What I also don't fully reveal is the depth and scope of my play book... Will I rush more or pass more on offense (will I run in a hurry to the fastsest treatment approach, or will I take a 5 step drop and look for a longer, wide open sure handed cure). Defensively, will I BLITZ or play ZONE (will I throw catuion to the wind and try the newest most advanced treatment, or will I play it more conservative and try the more 'vanilla' or simple treatments for my illness. Finally, some one asks about Special Teams... A last resort, yet vital part of any good game plan. I take a deep breath and look around my family and friend 'press-room' and say that I HOPE that we win the game out right, and all or special teams have to do is kick extra points, but if we need the help have sweet kicker for long field goals, and a punter that can pin the opponent deep inside there territory giving us a great chance at victory....

By the way...Even through the narcotic haze I noticed that my Purdue Boilermakers beat Western Michigan!!!!!

"Beyond Here, Be Dragons"

NOTE: Being patient with a life-threatening illness changes you. Period. You are never the same person coming out of your experience as you are going ing. From the most basic issues - removal of tumors or body parts, or whatever bodily issues you face, to the toll that your illness take on your closest family and friends. Sometimes those 'outside' the experiential bubble, it is hard to realize that the overall experience has so many effects on the patient from depression, pain and suffering to psychological issues that have short and long term effects on everyone around them. It is easy, relatively speaking, for the outsiders to say all the right things - those oh-too-familiar, and yes, important, words of support, while forgetting that for the patient focused on the sometimes moment to moment survival, they may sound like a babble to be swatted away, and this reaction may offend those with even the best of intentions, and I am speaking for all of us here, we are sorry for that.
     Likewise, this experience forces the patient into a near constant state of mental flux with feet landing in the real world, the world of the dismal future, the world of the hopeful future, and the world of the immediate present we are trying to drink in as we move forward to whatever comes. This condition can also be damaging - we as patients sometimes forget who and what is important, and even necessary in our real-time  physical lives - family relationships, friendships, economic needs of the household, plans for all the 'what-ifs' our conditions force us and our families into - and this can make us do crazy, strange, stupid and even dangerous things. I don't have to remind you of the myriad of movies that illustrate this stuff, but just wanted to put it out there, that for the most part, our off-putting behavior should be somewhat expected as 'we' try to process everything going on, and also realize that 'we' are trying our hardest to make 'your' experience with us as challenge free as possible as we march on to what ever is to come. Please forgive us our weaknesses, and hold our  hands for strength. Many times that is all that is necessary.

I am a fan of maps, cartography, and the sense of the unknown and adventure faced by early sailors embarking on ocean voyages in the 'flat-earth' era. My perusal of these maps, l find many maps made by captains from this time that 'run-out-of-space'. Not because of lack of paper or parchment size, but because of two things; both of which play into my life as a cancer patient. Reading captains logs from this time reveals that they would often place the now famous warnings, "Beyond here, be dragons (or monsters)" The two primary reasons for this are; the unknown - no on had GONE past the sketched limits, or to hide 'secrets' - that they did not want others finding should the maps end up in the wrong hands.

I understand this, as a cancer patient, and also understand those around me who have difficulty 'reading' the maps I am drawing in this life as a patient. As I journey forward, for me there seem to be more of the unknown to deal with, than there are secrets to hide. If you haven't noticed from my previous blog posts, dealing with life as a cancer patient is complicated. Each day I wake up can yield a host of things that I have never faced before, and like the old mariners, many of them, by no virtue of my own choice, I have to deal with on my own... No one can control the 'mutiny' going on in my body. No one can control other ships creeping in to take pot shots at me, or to attempt to siddle up to me in the fog and take control of my ship, wresting what ever I have built from me.

In so many ways, I am adrift, I have a map (treatment plan) that is being used to guide my journey, but to where? What lies beyond the edge of the  map? Is it a certain death in the clutches of some unforeseen beast? Is it an island of peace, serenity, and relaxation, filled with naked women and the finest rum and spices? I simply do not know, but yet like those sailors addicted to the sea, I continue to sail, forward, ever forward, pushing the edges of the map. So far, I still have the drive to see what lies 'over-the-edge', be it good or bad.


The previous is how I see my experience through treatment. Some days are smooth sunny sailing with light winds, and the future looks bright (these days I tend to get lazy and forget that I am still actually being treated for something trying to kill me!) and much like a Captain who may turn the wheel over to a first officer so he can nap in the sun, I end up suddenly jolted back into reality by some new issue - a side-effect I had not experienced before, or a test that show up something new or unexpected - and I have to jump to the call try to get my vessel back on course - again to where? Only forward.

For my friends and family who, by virtue my being 'gone' on my 'journey', I cannot see how my 'absence' makes their lives the more difficult. For mariners it is usually a lover, or wife, or children left on shore, as the story goes, looking longingly at the flat, mysterious horizon, for the 'return' of their 'captain' from the 'voyage'. O.K. enough with the quote marks, you get the point. In my role as the Captain of this adventure, I have had to use the map I have given - sometimes a crude, knock-off of the one given to me by my doctors - to try to explain where I am headed, what I expect to find and most importantly - when or even IF I will return to port, dock the ship, poke holes in the sides and stay ashore with them. I have to look at them and shake my head, glance unknowingly as they do at the map, and say, "I just don't know. All I know is that I have to go... I have to try... I have to move forward, for all of us."

For them, the other meaning of, "Beyond Here Be Dragons", is something that I cannot control. They see me venturing off onto the sea of treatment, and wonder what I am doing when I am 'gone'. Do I have   secrets I don't, won't, or can't reveal to them about my voyage? What kind of 'life' do I lead on the trip? Do I think of them? Do I wonder about what THEY are doing while I am out, 'galavanting the globe' dealing with a journey they cannot really understand? They have fears, and concerns just like the families left on shore by the captains.... "Does my Captain have another wife? A mistress? A family, a life in another port? Does he continue to voyage on with the hope of coming home to US or to journey on to THEM?" They look at the map and wonder these things as they look with hope for the mast returning on the horizon. They are as unsure about my return to their shores as I am about the fate of this, my latest voyage.

Back to my current voyage...

For the past several months, I have been cruising my ship, The H.M.S. 'Hope' on kind of auto-pilot. I have been napping, un-awares as mentioned above and mean while, slowly beneath the water line of my consciousness, visible only by CAT scan, the sea-worms of my cancer have begun boring holes into my liver, and lung. I had thought that the last battle when I had sunk the vessel Colon-Cancer, that I was victorious, heading on to the tropical paradise for a quick resupply, and then turning windward, had been heading home to port... The desire to unpack my sea-trunk, stay home, grow a long beard and write about my adventures becoming stronger all the time...

Then, one clear sunny day one of my mid-shipmen comes running into my cabin, and informs me that the boat is leaking, the worms have eaten through the hull, and the crew is being forced to bail. As a patient, this is the hardest part, my crew on board and my family at home, look to ME for answers. As if by some magic possessed only by Captains in these situations, I can tell them that it will all be o.k. We will make it to port and not sink somewhere out here in the uncharted waters 'beyond the edge' to which I have sailed.

Here is where captains get creative, and here is where the captains luck either holds out, or falters...

I consider the situation - the worms eating my metaphorical ship - being my liver and lung - need excising. The ship needs repaired, I hope I have what I need (chemo) in my store room. I consider telling them the truth, putting them to work, diligently, not knowing for sure myself if we will make it through. Then I think of the other option. The 'rum' in the store room. Should I admit to myself, that being beyond the edge of the map, there really is no land in sight, I have no clue where I am heading, the stars at night are all unfamiliar now and cannot guide me, and that no matter how hard we fight, we are destined to sink, into the mire, to the bottom of the sea? This being so, should I break open the casks, get out the instruments, unfurl the sails and party on to the distance until we re all too drunk to realize we are doomed?

I stand there, on the silent bridge that is my life, I listen to the creaking boards below me, the snapping of the lines and sails in the uncertain winds now breaking across the bow. I look at my 'crew' and see the look of concern and hope that 'I' have the answers and I make the decision. "Alright, my surly knaves, we push on. Carpenters, get the toxins from the storeroom, get to killing the worms, get rid of the rotting wood. The rest of you, grab the buckets, and get to bailing. Strip what wood you need from top-side, repair the hull. Unfurl the sails, turn her into the wind and let's make for port. Cook! Fire up the galley, keep the food coming, keep the boys fed, and by all means keep my pot full of fresh coffee. We have some rough sailing ahead, but push on and we shall make it home."

I finish my evidently inspiring speech, return to the cabin of my mind. As I listen to the men at work outside the door, I wonder if my words are as hollow as an empty keg, or if we will indeed, again, be successful in our journey and return home again.

In less than a week, I embark from shore, this time in the face of a storm rising, a departure into the dark, with the hope of a new sunrises of calmer seas, and safe sailing, yet again into the journey of treatment and recover.

"Beyond Here, Be Dragons." - but my ship the H.M.S. is battle worn, fully stocked for the adventure and ready to sail again. Out and back, that is the plan...