Sidetracked by Side Affects

The treatment of cancer varies, as I have mentioned before, from patient to patient, cancer to cancer. The final treatment process - referred to most often as a 'protocol' is reached through a combination of physical analysis of the tumor, the age, disposition, health and even the genetic profile of the patient. If all goes well, the medical professionals and the patient (and the patients family) come to a mutual agreement of how to do battle with the disease.

A quick review of my situation - again, shared by many but not all - the battle plan consists of several parts; Diagnosis, Removal or reduction of the primary tumor, surgical recovery, treatment process (radiation/chemotherapy).

So, seven months after surgery I find myself just at the half-way point of my overall treatment plan. Treatment for me started with 3 weeks of twice-a-day radiation, then a 6 week 'recovery' break then into the chemotherapy process.

For me, that means two primary drugs, Xeloda (a pill form of the commonly used 5-Fluorouracil) and a relatively new drug, Oxaliplatin (oddly this is a drug that uses PLATINUM as it's primary component!).

As I sat there in the meeting with the chemotherapy nurse, absorbing as much as I could about each, drug, how it would be administered and what it's side affects could be for me. To be honest, since this is my second battle, I kind of let most of this discussion go in one ear and out the other, leaving the meeting with a pile of pamphlets, papers and prescriptions - out the door and onto prepare for the chemical battle against my cancer.

Remember, that 'I am the MAN!' -right? I have defeated cancer once, how much more difficult would THIS fight be... After all, I had 'been there and done that' - right? Cancer ain't nothin'.... 'Don't START nothin' won't BE nothin' ' - right? Uh...things are a bit different that the first fight.

Despite 20 years passing between my two experiences, you would think that the process would be simpler, just based on advances in medical science - that would INCLUDE the reduction of possible side effects... How hard can it be? The bigger question, is 'How STUPID can I be?

So, today, I sit here having completed all the steps along the way and have made it through 6 chemo cycles, and honestly feel both stupid for not realizing that I am not some kind of super-hero cancer fighter. I am just one fighter among many, trying to get by day to day, hour to hour. Today has been, to put it lightly - awful. The worst day so far, and now that things have settled down a bit, have felt the need to share my experiences, while I am in good enough shape to do so.

I will try to put the Reader's Digest spin on this round of side affects and how I have dealt with them and how they have changed the things around me, and how I am trying to keep perspective on how my experience is affecting those closest to me.

According to the pile of literature on Xeloda, it is a pill form of 5-Fluororacil (which, oddly enough was one of the drugs I was on (in liquid form) 20 years ago). The material lists the following as potential side-effects: peeling, cracking and chafing of skin from the hands and feet (check, check and check), increased sensitivity to hot and cold (check, check), nausea (check), diarrhea (check - into the bag)...

Now...add into this mix the new drug I am on Oxaliplatin, a liquid delivered by IV infusion, who's main ingredient is PLATINUM of all things, that somehow interrupts the cellular mitosis of cancer cells. Now is where it gets interesting. The side effects of this drug are as follows; neuropathy in the feet and hands (check - I have lost feeling in two toes of my left foot, check - when I woke up this morning (the day after treatment) my hands and feet felt like I was being stabbed by 1000s of needles. I could barely touch ANYTHING hot or cold it took me 20 minutes to get dressed. I was literally in tears. It was embarassing. I am glad everyone else was alseep. I stumbled down to the kitchen, tried - unsuccessfully to make a pot of coffee, found my meds and my gloves and slippers - took about 3 vicodins and a bunch of nausea meds (more on that later) and tried to stretch out in my living room and get rid of some pain.

So, these two drugs - while I am being TOLD are busy battling the un-seen 'micro' cancer that MAY be floating around my body, they are making things in my 'macro' life much more interesting to say the least.

Now on to some new effects just experienced this past week... Weird nausea pains. This is the first time that I have experienced any nausea... I don't know whether it is related to the chemo, or to the flu running through my house the past couple weeks, or to the ongoing adjustment my body is making to having a digestive track with out a colon. But this week, all of a sudden I have become 'Queazy-Man'. To describe the pain, it is a strange combination of 'Extreme Hunger Pangs, followed by I'm Going to Puke My Guts Out' very hard to tell the difference. If I am quick on the draw, I can pop some anti-nausea meds and Rice Krispie Treat (don't ask me why, but some how it calms my innards. If I DON'T do this, I had better find a bucket, or a ditch, or a something, because what ever might be in my stomach will be making a return trip... I had that happen at a client site on Wednesday..thankfully I could hide away for amoment and cover up the leavings with parking lot gravel.

I am glad that I get treatments on Fridays, I try to plan for light-duty Saturdays - just in case I get a morning like today. The remaining challenge is to reminding myself that while my suffering is personal, that there are STILL people around me who care (for reasons known only to the Gods) and I must try to remind myself that they do not deserve to be on the receiving end of my anger, or get yelled at because I am in pain. My family is very inconcerned, obviously, and in their own way and they don't like to see me in too much pain. I have gotten a BIT better at asking for help when I need it, and in expressing how I feel in a way that goes beyond just bitching about aches and pains. I have also learned how to 'move-around' my emotional needs to others outside my house - who I can tell are simply sick of hearing about it...

Well, that is about it for now, I do feel a bit better, might actually go out and attempt to do some studio work before going out tonight to enjoy a belated birthday dinner with family and friends...

The Mystery And Beauty Of Jigsaw Puzzles...

OWe are bathed over in a world of technology, and while in many ways this has improved and enhanced our lives, in many ways, in my opinion, it has lessened or dimmed our appreciation for simpler things. Some call them 'old-school', or 'retro', 'classic', or heaven forbid, 'antique', but none the less, I think there are many things we would do well to 'reinvent', 'revive', 'revisit', or 'renew'. One of my favorites is the good old fashioned jigsaw puzzle.

I know, what you are thinking, "Dude, this is supposed to be a blog about battling cancer! Your struggles, your hopes, your dreams, your experiences... What's with the jigsaw puzzle crap?"

As my friend from the Dos Eqis commercial would remind you.... 'Stay thirsty, my friend.'
I will explain... So grab a cold one, here we go.

According to an exhaustive - 1.87 seconds - search on internet, the first jigsaw puzzle was invented by Englishman, John Spilsbury in 1760. Who, supposedly, was tired of looking at the painting of his mother-in-law, and in a fit of rage took his jigsaw the portrait that was looming over their fireplace. And upon discovering the pile of pieces in a box in front of the fireplace, his WIFE gave him 'the-look' and simply said, "Put it back together, sweep up the mess, and hang the picture of me mum back up where it goes." Well, fourteen hours  and three bottles of horse glue later, the first jigsaw puzzle was completed. Oh, only the first sentence of this paragraph is true, the rest is just me, trying to get inside the head of the London map maker and printer!

In my world, jigsaw puzzles have had greater meaning. In particular they have special meaning as part of my therapy and treatment - both currently and historically.

As I have mentioned before, the waiting game involved in the diagnosis and treatment of cancer is almost as agonizing as surgery or the side effects of treatment. Fortunately, somewhere along the way, some doctor or nurse, or patient said, "Damn, it! Sitting here in this stupid room, staring at the walls, listening to the phone ring, and watching the clock tick by the minutes, is BOOOOOORING. Next time I come, I am bringing in something to do."

So, back at home, this thoughtful person went rummaging through the 'game-closet' as we used to call it....you know that place where sits this Jenga-esque (look it up if you don't know what it is) stack of board games (no batteries required), like Monopoly, Life, Clue, Parchesi, Sorry, Candyland, Chutes and Ladders? And, there, at the very bottom of the pile, waiting like faithful friends, long forgotten, is a squished stack of jigsaw puzzles - lighthouse scenes, fruit in a basket, tools in a drawer, a flower garden.

Our person now verrrrry, carefully grabs a hold of the puzzle boxes, and if they have mad Jenga skills, they can pluck them from the pile without toppling over the stack of games above. Most likely what follows this attempt is an hour or so of reboxing and restacking the games (complete with cursing - and vows to throw them all out) and the plucked puzzles are put into a bag, their next destination, the waiting room.

That brings us closer to my part of the puzzle experience. Since I have been through this cancer experience twice now, I will zip ahead to the part of the story where, every tim I enter yet another waiting room, I look for the stack of puzzles - or nondescript cabinet that is DESTINED to contain them.

Much like my love of crayons (another post entirely), puzzles take me back. They are deceptively simple and complicated at the same time. Whether they consist of 30 over size pieces and a simple picture, or the maddeningly complicated - ceiling of the Sistine Chapel in 10,000 pieces, they have the same simplicity. Open the tattered box, dump the pieces onto the table, take a deep breath, and begin.

The metaphors for life of a cancer patient are deep within the world of the jigsaw puzzle and as I wait for another treatment, or consultation I have plenty of time to ponder them.

To be really successful at surviving cancer, or completing Jigsaw puzzles you must be able to accomplish several things, you must develop skills in areas you might not excel.

First, there is the beginning. Like a puzzle in a box, our lives BEFORE cancer are fairly neatly compartmentalized in such a way that no one else has to see the jumbled insides, they just get to see the pretty pictures we present to the world on the 'box' of our lives.

Then, there comes the diagnosis of our condition - the point at which the pretty boxed picture is ripped open (some of our 'life-boxes' have been tapped pretty tightly) and the pieces of our lives dumped out onto an examining table for all to see.

Now that the pieces have been dumped out, the work begins, various specialists, doctors, nurses, lab-techs many unseen hands begin to piece together the story of the cancer patient, and they all try to figure out how to best reassemble the pieces so that, in the end, the finished puzzle will resemble the original picture on the box, without too many missing pieces.

The same goes for the puzzle I start working on in the waiting room. I am only ONE of the patients that move through the office during the day, and only ONE of those who try to assemble the puzzle. The amazing thing to me is that, each time I return a little bit more is put together, the picture becoming more clear.

Sometimes I get to work on the puzzle for a short time, and at other times I get to work on the puzzle for so long, I get absorbed in the effort, and don't notice the time passing until a kindly nurse nudges me on the shoulder, "Mr. Lightfoot. Time for your appointment." I find myself disappointed that I cannot sit there longer - a strange dualistic dilemma, I know...but still.

It seems silly, but there are 'moments' during the diagnosis, treatment and recover of the cancer patient that seem like small victories to the outside world, but are HUGE to us as patients. Much the same can be said when attempting to complete jigsaw puzzles. If you have never sat at a table with a huge puzzle, and been confused, frustrated, even exhausted by the daunting task of finding just the right piece to drop into a hole in the puzzle...then you should do it...just once... Then you would have a little bit better understanding of what cancer patients (and their doctors) go through.

As a patient, your initial diagnosis may consist of literally dozens of tests, scans, readings, requiring an equal number of visits to clinics, offices and hospitals. If you are lucky, the doctors will bring into the room that 'missing piece' - not quite being held aloft and lit by heavenly light - but still... A victory none the less...."We have discovered the problem!!!!!" and they carefully lay the piece in the hole in the cancer patient puzzle.... and then move on to the next piece....

This puzzle piece assemblage process goes on and on in the life of the cancer patient... Surgery to remove tumors, medicines and therapy to recover from surgery, finding the proper chemotherapy and radiation treatments to battle the remaining cancer.... the hope that in the end, once again, the medical puzzle makers can do their part to put your back together the life of the patient, so that we can go on with our lives.

Back in MY waiting room, I return a few weeks after my last visit, expecting to see 'my puzzle' there waiting for me to finish... Instead, it is gone! Evidently finished by some one other than... Someone else who has completed a picture, and now we move on to a new one. A 'victory' in a sense, a 'puzzle-life' reassembled. However, now, there lies another 'puzzle-patient' exposed, dumped on the table, the pretty picture on the box, giving the assemblers the view of how things are supposed to be - the task again, study, analyze and assemble (cure and move on).

My greatest hope, obviously, is that my personal puzzle will be assembled (minus the pieces representing the cancer), in such a way that I can carry on - a little worse for the wear - my box now a little bruised on the corners, the picture a little faded with age - but still, I hope my experience can allow others to slow down a bit, take some time to remember the simple pleasures that surround us -- even if we are NOT cancer patients, and realize that life is really similar to a jigsaw puzzle, you can only put it together one piece at at time, life goes together in its own way, one cannot 'force' pieces together that do not 'fit', and more importantly you need to step back from what you have 'put-together' to get a sense of what is still missing, and how much there is still to do...

Go, now, to the bottom of the game closet at your house, get out a puzzle. Turn off the computer, the television, the cell phone, dump the pieces out onto the table. Get a cup of coffee and a nice muffin, take a breath. Reach into the pile of pieces, and begin... Your efforts will be worth it...

We live a 'tethered-existence'....

The purpose of this blog is to promote my healing through discourse with those who decide to read the posts, but more importantly as a way for me to process things in a way that does not require a person to sit and listen to me blather on about what ever stuff may be rattling around in my skull... Unlike a person stuck in a chair, or at a barstool, or bus stop, or where ever, you the reader can just click away - without continuing to read - and that is fine. I am none the wiser, so I don't feel offended. Again, blogs are usually one-directional anyhow - me to my 'followers', or into the ether world, either way, I guess I just put it out there.

Recently, prompted partly by the fast approaching date of my 30th High School Class Reunion, and with one kid away at college, I have been cleaning out dusty shelves and spaces in my house. What to keep what to throw away, what in the long run might my kids and grand kids want to see that would give them a glimpse into the life of their Dad, or grand-dad, or great-grand-dad. As I was doing this I began thinking about how life expands and contracts around us.

I have come to realize that life is a series of 'tethers' - some attached to us by others, and some we create and hold tight to by the virtue of who we are. I am also coming to realize that one key to this thing we call life and living happily is knowing which ones to cut and which ones to hold on to, and that the hardest thing to do is to let go of them. Sometimes, too, we need others to take the knife and cut away those that we refuse to release, and cannot see beyond our rigid grasp of them, that they simply need to go.

Not to be too simplistic, but in the interest of space, I will summarize the 'tethered-existence' of one man's life... Conceived in the womb, the umbilical tether is the first obvious connection - made and broken through development and birth. From birth we are tethered to family, environment, community, and culture. There are so many tethers; gender, race, ethnicity, language, heritage that it is amazing to me that we ever break free enough to continue, but it happens.

In our culture these first tethers are broken when we enter the 'school-era', where for the next to to fifteen or so, we move away from the confines of family and into a world of peer-community - new tethers form - independence grows, interests change, we struggle to become our own person, to find our own path. During this time we bind our selves and our identities to new people and communities, new values, ideals - yet some connections remain. Some we cannot ever escape.

I speak now of that often unspoken tether that only becomes more obvious in situations like we cancer patients (and other patients too!) face is that of genetics. Over the past 9 months since my most recent diagnosis and treatment, the importance of genetics has become very obvious. In our 'fix-it-pill' world where there is seemingly a dose of 'something' that will cure 'anything', it is obvious at least to me that the pharmaceutical shell game is almost a joke. Don't get me wrong, I LOVE medical advancement, hell, I am CERTAIN that I would not be here, boring you with these posts, were it not for medicine! What is comical is that DESPITE all this, your genetics will catch up with you, eventually.

Eventually, in either saddness, joy, relief, regret, or excitement, we all die. As many others have said, it is more about HOW we live than how LONG we live. For example, I have a handful of friends that expend boundless amounts of their time, energy and money on trying to 'do the right things' to stay alive - my vegetarian friends spend their time in avoidance of meat - hoping that longevity will result, my religious friends spend their time in prayer and dutiful observance of scripture - hoping that their efforts will result in a good life, and a good after life, my health-conscious friends spend their time in avoidance of lifes man-made hazards, smog, smoking, fluoride, preservatives. It all seems kind of pointless from my seat in the doctors waiting room, where I sit, waiting for my next dose of something or other.

Sorry, I 'drifted' - back to the tethers. Children grow into teens, teens in to adults, adults delve into relationships - some with children, some without, relationships change, the cycle repeats. Somewhere along the line we discover there are limits to life - tethers - things we cannot let go of, things we choose to release and those that seem impossible to cut.

Within our Western culture we have developed to the point (good or bad) where we, in my opinion, are not allowed to live completely because of these tethers. As I have mentioned the only ones we currently cannot escape are the genetic ones. But, again, through the lens of my life I can clearly see that the truly free life of the untethered existence is probably not possible. This all sounds kid of dire, but I hope that if on examines their lives that they will discover that there have been times when we thought more about the journey than the ties that bind us to any place or time. I have had many.

Retreating to the beginning of this post, while cleaning I ran across an old journal from one of my more 'adventurous' periods - my time living in Haiti. At that time I was between the tethered existence of high school and adulthood - called 'college' - and was really discovering the world outside my regular life and also discovering things about myself, figuring out who I was, which direction I wanted my life to go...

NOTE: Yes, yes, I know I am blathering, but trust me, I am getting to the point of the post -- afterall, it is MY blog!!!

During my stay in Haiti, I was encouraged to go on a 'walk-about' - to take an individual journey, with no destination, no map, no goal, other than to simply go, explore, observe, and live. So I packed a couple days worth of food, a sleeping pad, my journal, some pens, my camera (of course) and went. Kind of like the old Kung-Fu show, 'I wandered, I worked, I ate, I slept, I met people.' I recall that walk-about with fondness because of the fact that only during that liminal time of life (in OUR culture) is that kind of thing tolerated. That makes me sad.

How does this relate to my Second Battle with cancer? Here it comes folks. I have discovered that due to all the tethers that bind us to the whole realm of adult responsibilities we are simply not allowed the luxury to re-focus our lives, to reset our psychological compasses, to redirect the path of our lives, to re-discover the things we really, truly enjoy. It is not the 'way of the West'.

Think of this - and obviously I have - what would happen if YOU decided to just say, "You know, I just need to some time to go." so, you leave a note on your kitchen table that says, "Dear family, I have decided to take a walk. I will be back in a while." Now, you don't do anything drastic, you pack a small bag with some clothes, a journal, some pens, a modicum of money, put on a good pair of walking shoes and just go. What would happen? You would quickly be branded a crazy person, and someone would come looking for you. You have committed no crime, you have broken no laws, you just decided to 'go' for a while.

Now, let's say you succeeded in your walk, were not re-captured like an escaped zoo-animal, tossed into a cell, drugged with thorium and labeled a nut case, and you returned after say, a good month or so and announced to your family. "Well, I have decided to quit [insert job title here] and become an [ insert 'non-traditional-option' here ]. I think we should sell our house, live minimally and enjoy the rest of our lives...." What would happen?......., see the beginning of this paragraph.

The unwritten, unexpressed limitations that keep us locked into the conventional paths, are the tethers I have been speaking about.

For cancer patients, the simple fact that we (sometimes daily) look down the path of life and see it as shorter rather than longer, come to the realization that LIVING life is what life is all about. We suddenly realize there are many, many tethers that can be cut that will make the rest of our lives as enjoyable as possible for what ever time that our medical treatments, our genetics and our luck allow us to have.

Time Marches on, Yet the BEAST still lingers....

Looking at the calendar for a moment, August 4th marked five months since I underwent surgery for, what at the the, was to be a tumor removal, with the temporary colostomy. The surgery was to be followed by a reversal surgery, placing me back on the road to normalcy, living out the rest of my life, having struggled past yet another bump in life's road.

Bumps in the road, yeah, right.

Given my seemingly total lack of medical luck, instead of the 'old-normal', I am now trying to adapt and discover what the 'new-normal' means. To say that the process has been 'challenging' would be like saying the state of the U.S. economy is 'kind-of-a-mess'! 

I had also hoped that the surgery would be a simple, pluck-the-tumor-plop-it-in-the-bucket, stitch me up and send me home kind of thing... You know, a few stitches, a few days of ouchy-belly and pampered recovery at home and then back to the regular grind; work, family, bills, activities, ad infinitum....

Simple recovery, yeah, right.

One thing this recovery process has allowed me to do is to search out the support of others dealing with similar issues (thank you, Al Gore for inventing 'the Internets'!) and, through reading and discussing, I have discovered that my experiences have been very easy (I knock wood all the time) and uncomplicated than many of my new friends. I also discovered that I was wrong about many things regarding my condition, discovering that it affects people as young as 10 and as old as 90 and that, I am hardly alone in my fight with cancer, or with adapting to having my poop come out my belly!

So, returning to the title of this entry, how does the Beast come into things? It has to do with the comfort factor of the 'new-normal'. While I have only been in this new physical phase for less than six months, I have to consciously remind myself that I am not -in fact- myself, any more. Outsiders to this experience who haven't seen me in a while will only notice what appears to be a slimmer 'me'. I do a pretty good job of internalizing most of my emotions, most of the time, and I am thankful to have a handful of people in my life who I can share everything with - or I would seriously have ended things a long time ago. 

The Beast lives inside, lurking, waiting.

There are many stories, analogies and metaphors for the long-term fight with cancer, but to me the Beast that lingers in the shadows seems to fit best. Defeating the Beast began with identifying its 'tracks' (diagnosis), hunting the Beast (surgery), and finally deterring it's offspring from seeking vengance (treatment). With the help of my medical team, I now live in the world of 'Remission' - no one says 'cure' too often these days, because much like a starfish -which grows anew even when chopped into pieces, cancer can do the same thing. My case is a perfect example. 

I live in fearful reminder that vengance may belong to cancer, and victory not to me.

In my case, the treatment regimen I am undergoing is actually called, 'maintenance-chemotherapy'! Every third Friday - three so far, 9 to go - I undergo a day of IV treatment with a chemical called Oxaliplatin - a platinum based medicine - that kills cancer cells by messing up their messed up DNA replication process. The interesting thing is that, currently, there is not even any evidence that I still HAVE cancer - I mean there are currently (thankfully) no new visible tumors to excise, but I live with the fear (sometimes very scary, sometimes I hardly think about it), that it may, once again latch on SOMEWHERE in my body and begin it's slow growth process again. Waiting, biding it's time for it's next infernal attack.

That is the nature of the Beast, it struggles to survive, the cocktail of chemotherapy struggles to keep it in check.

So, this is how I live my life. Day to day, things seem to be normalizing, yet I constantly - either consciously or unconsciously I am always looking back over my shoulder for the Beast. Every twinge, every, new ache, new pain, new discomfort, unidentified or unexplainable feeling, puts me in the mind set that it is the Beast, taking hold, growing, waiting for its next chance to  attack. I fully know that each struggle will get tougher, each treatment has the potential to make things worse or better.

All I can do is pay attention to signs of the Beast, work with my doctors, listen to my body, enjoy my family and friends and hope that I can keep the Beast at bay for as long as possible...

Too Much Time To Think

NOTE: It has been a while since my last post and I don't want to get away from the importance of how my blog has helped me to deal with many issues surrounding my experience with this episode of cancer in my life. 

One thing that being a cancer patient does for you, is you get plenty of time to sit around and think - this is a double-edged sword - for me I seem to go through cycles of positive mental energy where I see opportunities for the future that I never saw before, and then I have times where all I can see is the darknesss, the pain and the futility of the battle.

What I am finding, this time around is that I am running out of people who care, people who want to listen, people who sympathy, most seem to just want me to shut-up and leave them alone. 

It is VERY easy to get self-involved and to forget to look 'outside-yourself' as it were, to see that despite what I am going through, the world goes on, and, the world does not care. Live, die, cure, suffering, happiness, despair, beyond my personal bubble, none of it matters.

During this second phase of treatment (I started a regimen of Oxaliplatin and Xeloda three weeks ago), I have been healthy enough to return to work, to get back to somewhat of a normal routine around my home and with my family and then I realize that over the past four months nothing really has changed. 

The problems and issues I faced before all this happened are the same ones I am facing now that I am here, except that now I have an additional mountain of bills that I cannot pay. Just for the depressing fun of it the other day, I calculated how much money it would take to get me 'even' back to the point where all I had to deal with were regular bills would be right around $25,000, $40,000 if you count paying back family who have helped us out over the past months and to help pay for my kids sophomore year at college... That's all, a measly $25,000.... Lottery? Publishers Clearing House? Yeah, with MY luck....sure. 

Facing this and trying to come up with some kind of new plan for dealing with the economics of my life,  which, I know, are not near as bad as many others, is only one challege I have. We still have our home, and our jobs, so it is not completely hopeless, I guess. I just calculate that I will have to work, full time, until I am like 83 or so...

Through all this mess there are relationships, and it is the relationships that, in addition to the medicine, that really make or break a successful course of treatment. Fortunately, I have renewed and strengthened some relationships, and others I have neglected, or let whither - to the point where I don't feel they can be resurrected.

As I sit in the treatment room and watch the Chemotherapy medication work into my veins, supposedly doing its' job. Drip ($50), drip ($50), drip ($50)... I sit there, thinking of my family, and all that MY condition has put THEM through. I will start with the easy and move on to the rough. 

My oldest kid was away at college during my initial diagnosis, surgery and recovery. He is in his own world. He was able to come home during my hospital stay, since it paralleled his spring break - this helped my wife out, giving her a break from back and forth trips to Cleveland and with things back at home. But, in the bigger picture, he is on his own now. I am not sure what he exactly sees in me anymore, but he is inching ever closer to cutting the final strings from home and becoming his own man, the issues of his parents will rapidly be replaces by his own. I am the one seeming to struggle with this more than him... I miss my boy, sorry, it seems silly, but that is how it is.

Moving on to my youngest kid, he is just old enough to kind of understand what is going on with me. We have not had to hold too much back from him, he is 13 and is getting a forced baptism into the world of grown-up issues. From the time I have come home he has been very helpful, in fact his bed-side manner was wonderful. He dutifully fetched things to me when I was mostly bed-ridden, he has asked more questions about my new conditions (see some of my previous posts) and I think his interest in science has helped him understand a bit what I am going through. But, now that I am back to work, and it is summer, I feel terrible that I cannot spend more time with him. While my wife and I work, he sits at home, doing chores (mostly), watching too much TV, playing too many video games, and wasting away his summer. 

While the chemo drips, I think about how many opportunities that my parents both gave, and insisted upon for us growing up - even though my parents often made less money than we did - yet we were always busy with parent-involved activities; little league, summer camps, scouting, etc. For us, our parental involvement consists mostly of haggling and arguing over chores and the watching of television shows that we mutually like... That is about it, and this much change. I only have about five or six years to really influence him and I hope, beyond all that I can change that and focus more on him and less on my issues.

Finally, I come to the toughest of all of the relationships, that with my wife. I want to state from the start that we have been married now nearly twenty three years, and been together nearly twenty six years and she has been with me all along the way. It has NOT been an easy journey for her. As noted this is my SECOND battle with cancer. She was there for the first, holding my hand and heart through that process. During that first time we also lost her step-mom to liver cancer and her mom developed breast cancer. I cannot imagine having three important people in your life affected by basically the same illness - cancer, and to experience the whole range of outcomes that the disease offers. Her step-mom fought liver cancer for two years before succumbing to it, her mom was able - through surgery and treatment - to fight off breast cancer, but eventually succumbed to complication of lymphoma. Then most recently her brother-in-law faced, fought and is till fighting Stage IV colon cancer, and then, I develop my second round of colon cancer. I am amazed daily that she has had the strength to deal with all this... on TOP of all the regular bumps and bruises that life throws at us. I really don't know how she has kept it together... It surely has not been with my help.

Not to go into all the details of a long-term relationship, suffice to say that being with someone for twenty plus years you get to know each other pretty well. This leads, I think to relationship-laziness - I am speaking on MY behalf now, not hers! Even before I got sick I can say I did not do as much as I could to make our lives better. I think I had been smacked with so many things during the last 10 years that I tended to neglect what should be the most important relationship in my life and. To be honest, we both suffer from the weight of continual economic issues. I think that like many people, it is hard to be happy when our lives are filled with living pay-check to pay-check. In many ways, we can't blame anyone but ourselves, we have not been the best of financial planners.

Beyond, the very real issues of economics, living with someone for so long makes it VERY easy to get into patterns. The same arguments, the same opinions, knowing the answer or opinion or comment your partner will have for nearly any situation, coming to the realization that you cannot change people to fit your picture of them. These kinds of realizations can either weaken or strengthen a relationships... For me, I think it is a mix of both. I think, though, if you ask my wife, I have been more of a 'challenge' than a 'comfort' - then add in the events of the last six months and I am surprised (and thankful) again, that she still manages to keep it together enough to help me through this, and to try to give me the space to deal with all these issues. I just hope that this process has not bruised our relationship any more than it can handle. 

It has been hard for me to talk directly to her about my new condition - I feel that I have burdened her enough with all the transportation, time off of work to care for me, extra time at home dealing with me being bed and then home bound for three months. During this time she was left pretty much doing everything, from dishes to laundry, to paying bills (with one income and help from family), to trying to pay attention to the needs of our 7th grader AND keeping up with all her regular duties at her job. Again, simply amazing. I am not sure I have the same strength - were the tables turned. 

Through all of this I am not sure I have done much to make things better. I think my personal frustrations  keep coming out - I tend to lash out and yell too much at both her and my boys. I sometimes give off an attitude that I am SURE says, 'I don't give a crap about anything!'. 

I don't know how else to get across my frustrations over this whole mess. A big part of my frustrations is that my days seem to be very polar... I seem to be either happy, energetic and enthused about things, or depressed, angry and convinced that there is not much of a future left. 

Again, we come full-circle to the beginning. Things are bad, but they could be worse. I am not in control of my physical destiny, but if I follow the advice of my doctors, and make an effort to take care of myself -- physically, mentally and emotionally, it will allow me to live what I have left without causing anyone any more grief than I already have, and maybe along the way, allow a little more happiness to creep back into the darkness that seems to pervade my life - well, today at least...

"I Want A New Drug..."

NOTE: Today I started a new regimen of treatment for what cancer MAY be floating around my system, since nothing has shown up on any recent tests or scans. I have just come of of what oncologists like to call a 'resting-period'. This time - usually about 6 weeks long is designed to give the patients body, mind and spirit time to heal, before battering it again with another series of treatments.

As I have written in my previous post, this liminal time allowed me to reflect on not only the physiological aspects of this period, but the psychological as well - revealing there different ways my experience has shaped my mind. Now moving forward if you will..... we will move backward....once again, through the vehicles of 1960's television and 1980's music to understand my new experience with this combination of medications and how they affect me.

<To be read as Rod Serling...deep, scary, slow... Oh, and you must close your eyes and think in Black and White!!!>

"Return with me, if you will, to another time....well, to two other times, the 1980's and to, well, this third week of June 2011...."


Somewhere on a smokey stage in the 1980's mullets, glitter, tight pants and smoke fill the air....Huey Lewis & The News perform....

"I want a new drug 
One that won't make me sick..." 


Little did the honorable Mr. Lewis know that his words would ring true in the life of a cancer patient, preparing to engage in the second stage of a battle with colon cancer. The new drug combination, I, the patient, will be receiving is called FOLFOX - an acronym for a 'cocktail' consisting of primarily Xeloda (the pill form of a drug called 5-FU) and the 'new-drug' Oxyplatin in IV form (whos primary ingredient is Platinum!!!). 


The Doctors explain while I may not get 'sick' - like losing my hair, or losing enough weight to allow me to win a heroine-chic model competition, I will most likely experience things related to cold.... But I get ahead of myself.... First I have to get PREPARED to RECEIVE the medicine....


"One that won't make me crash my car 
Or make me feel three feet thick..."


Here is where the story gets a little 'fictionesque' at least from MY esteemed perspective, Rod? Please take over....

"The man, desperate to be cured of his illness seeks out the best medical minds have to offer.... He must be...prepared...given special medicine to allow the medicine he will receive to be safely administered...."


Now, according to 'eye-witness' my journey to receive my 'port' delivery system consisted of taking too many pre-operative relaxing medications. Driving my wife and one child on a somwhat harrowing (to THEM) journey to the hospital. Where I managed to get safely to the gurney, without killing anyone with my apparent erratic driving. I remember this much...if NOT in the same way. The last thing I DO remember is lying on a gurney and a nurse approaching me with a syringe saying, "O.K. We are going to give you something to make you relax." Three, Two, O.... (I am out).

Rod, a little more help here...?
"Awaking in a stupor, the man now properly equipped wakes to a world, wobbly, slightly disoriented, like some kind of mad dream. Things seem the same, but somehow different...He makes his way into the world..."

This day was SUPPOSED to be simple. A quick nap, quick surgery for inserting the port. Wake up, hop up from the table go to my next two appointments, then home to relax. Easy, right? Again, according to witnesses, not. As I am being pushed through the hospital in a wheel chair -- for some stupid reason they wouldn't let me walk! I began hearing Huey Lewis again in the back of my head...his big '80's hair glittering in the stage lights...


"I want a new drug 
One that won't hurt my head


So far, so good... my head DIDN'T hurt! However, my feet did seem a bit large, kind of like clown feet...and yes...black and white clown feet. I don't know why but the air flowing through my hair made me flip my head like good ol' Huey Lewis...but I am sure to the nurse pushing my chair it seemed like some kind of seizure!!! What the hell... I couldn't feel my feet anyhow.


The rest of the day is a blurr. I was informed again, by hopefully reasonable sources, that I somehow made it to both my follow-up Radiation Oncology Appointment (which was in a completely different part of the building) and then on to my regular Oncology Appointment, where, according to my nurses today, I was quite jovial and wanted to assure me that I was alright and left seemingly under my own power.


Rod, a conclusion to the day please?
"Warily, but in a state only known to his maker and the man himself, he drifted, drove, almost as if by some kind of programming home to the comfort of his home and bed...Never quite sure of what had happened that day..." 


Eventually I drifted off to sleep with a final verse from Huey Lewis....

"One that won't make my mouth too dry 
Or make my eyes too red" 


Waking up the next day, my wife convinced me that I was still too loopy to go to work, where I would be required to not only drive a van, but climb ladders, check fire alarm systems in buildings, ensure the safety of hundreds of people at these facilities, since again not to my knowledge I was still so under the influence that I tried to use the waste basket of my oldest sons room as a urinal sometime during the night...thank GOD he was away for the week! So, I stayed home, on the couch, with the dog, watching house and drinking coffee... lots of coffee.


Rod intro to today please?
"A new day dawns, and finds the man at his kitchen table staring into a hot, black cup of coffee, desperately trying to put together the pieces of the previous day, knowing, all to well he faces a new set of challenges..."


I reach for the pot to refill my mug and trying to figure out what side effects I would experience from this new drug and good ol' Huey popped back into my head...


"One that won't make my mouth too dry 
Or make my eyes too red" 


So far so good...

"One that won't make me nervous...
One that won't spill... 

"One that don't cost too much ...
Or come in a pill... 


I figured that by the time I am done with surgery and treatment the actual cost ill be in the neighborhood of $1,000,000!!! Thank god for insurance... And people say the American Healthcare system sucks... NOTE: For example, I was just in formed that in Kazan,  RUSSIA a woman awoke SCREAMING in her own COFFIN at her FUNERAL where DOCTORS had declared her DEAD... She apparently died a SECOND DEATH 12 minutes later in the hospital....Her husband is suing...

"I want a new drug...
One that won't keep me up all night...
One that won't make me sleep all day... 
One that does what it should...


After all this it had BETTER keep me cancer free for a long time to come....

"One that won't make me feel too bad... 
One that won't make me feel too good... 
One with no doubt...
One that won't make me talk too much... 
Or make my face break out...

Facial breakouts God can't seem to give me....CANCER, TWICE.... not fair!!!

LIMBO - The World of Mr. Screwit, Mr. Worrywart and Mr. Optomist

LIMBO - a strange word. Stranger yet a description of something in between. Something hard to define. No one has been there, yet there has been much written about it. So, how does 'limbo' refer to me and my current situation, my battle with cancer. Let's take a look at the definition first. According to the Dictionary the definition of LIMBO is as follows...

lim·bo ¹  (lmb)

n. pl. lim·bos

1. often Limbo Roman Catholic Church The abode of unbaptized but innocent or righteous souls, as those of infants or virtuous individuals who lived before the coming of Christ.

2. A region or condition of oblivion or neglect: Management kept her promotion in limbo for months.

3. A state or place of confinement.

4. An intermediate place or state.

So, taking a closer look at how the definition of 'limbo' relates to me, let's break it down, shall we?


1. often Limbo Roman Catholic Church The abode of unbaptized but innocent or righteous souls, as those of infants or virtuous individuals who lived before the coming of Christ.


I have been back to work now since May 16th.  A week later I was 'freed' from the last of the physical shackles - the wound vac a week later. Since then I have been slowly returning to 'life as usual before being sick'. It has been very strange. I find my self drifting in and out of happiness, contentment, fear and uncertainty. Looking at the first definition of 'limbo' above, I can say that at one level I do feel kind of 'innocent', and maybe at times a bit 'righteous'. Indeed, thanks to surgery, medicine recovery and luck  I have been lifted up, in a sense... At least from those who enter the cancer battle in much worse shape than I did. 


Much like the first time I dealt with cancer, I don't feel 'sick-enough'. I know this sounds stupid, and I certainly DON'T wish to be any more sick than I have been, it makes it much more difficult to remind myself that while I am in a period between treatments, I am by no means 'in the clear'. Things COULD go seriously south at anytime, and, really there is little that I can do about it. So, like being in limbo... I wait. Like being in a waiting room for an appointment, I wait. Like the times when tests have been done, I wait. There is really not much anxiety about the outcome of all the waiting. I have given over to the fates that as long as I have done what I could - followed doctors orders, taken care of myself, that there is really not much I can do about the outcomes...


So, here I am again... In between. Moving on with life, with the ever present cloud hanging over me that this could all be temporary and that, through no fault of my own, I could be involuntarily thrust back into the world of missed work and multiple treatments. This past week was a perfect example of what I am talking about.


I woke up Monday morning and got into my new routine. I wake, shower, change my 'appliance', snap on a new bag for the morning, grab my clothes, dress, go downstairs, make coffee, have breakfast, make lunch, pop on the TV and watch a little Weather Channel and Sports Center in the quiet dark of the pre-dawn hours....and halfway through my bowl of Raisin Bran, sitting in my comfy chair, it hits me --- I am STILL 'technically' sick! 


I put the bowl down on the table next to me and almost automatically my right hand finds its way to my ostomy area, and rests there. The sudden realization that things will NEVER, EVER, be the same as they were before surgery. Even if I survive all the coming treatments, remain clear of cancer for ever, I am NOT the same as I was before... I think this too is how I remain this limbic state. The uncertainty factor creeps in... When I recognize it, is when I get scared and a little sick to my stomach.


Wait, that didn't make much sense, so let me explain. For me having to deal with a second life threatening event makes how I evaluate the 'importance' of things very differently than how I consider that most 'regular' people do... Again, not so clear... let me try again. Take bills, personal financial liability and the like. 


Psychologically I am torn to the point, I think of near schizophrenia. One part of me, I will call him Mr. Screwit, could really give a crap less wheter or not anything but the most basic of bills get paid, because, I could end up very, very sick, and then dead, so what does it matter. Another part of me, I will call him Mr. Worrywart, seems to wake me up every morning about 4 o'clock in the morning (or this could just be the cat!) and lays there going over a mental spreadsheet of every bill that is due, how much we owe, how much we do or don't have in the bank, which bills we can pay, which we can put off and which we just have to burry in the bottom of the bill drawer and ignore. The final part of me, I will call him Mr. Optomist, is the planner. He REFUSES to think that things could get worse, and is constantly planning how to do the right thing, work hard, make enough money to pay the bills - even the ones for all my treatments that are piling up like one of those Vonage commercials where people keep tossing things onto the huge pile. So these tree beings do battle in my head all the time.


Let me return to the limbo definition again... 


           2. A region or condition of oblivion or neglect:

This is the PERFECT example of what I feel I face the most. Knowing what I have just been through - major surgery, a long hospital stay, pain, a long recuperative period at home, pain, boredom, a sense of having no place in my old life anymore. I can honestly say that during the past 4 months my family and most of my life, and responsibilities, have continued to drift by me, like things floating along with me in a flooded river... I can see them. I know I should reach out, grab them and deal with them, but then Mr. Screwit takes over and say, "Why bother? It's not going to matter. Nothing's going to get any better." This feeling of hopelessness, indeed, filled much of my time as I worked toward healing up and being able to re-enter my 'regular-life' - where I was an employee, earning a wage, contributing to my family and actually being a 'part' of things again, instead of just some kind of human furniture that needed to be 'tended' to or 'adjusted' day in and day out while I was recovering.


It was during this quiet time, that mid morning period after the wife had gone to work, and the kid to school and it was just me, the empty house, the dogs, my pain, and my depression that Mr. Worrywart would take over. I would make an effort to be productive and go over the packed 'bill-drawer' sort out the bills by 'importance' (as discussed above) that would make me feel like I was participating...and Mr. Optomist would show up... usually after my second cup of coffee, a shower and some moving around the house. By now, I was certain everything would be o.k., things would get better FAST and I would be able to put this behind me and return to 'normal'. 


Then, there would be a knock on the door... a Home Care Nurse arriving to repack my wound and reattach the stupid pump, or the mail would come - a stack of new bills, or the phone would ring (I still don't answer it) and a bill collector - human or automatic - leaving a message about some over due bill or what ever... and like a mental explosion Mr. Optomist disappears and Mr. Screwit returns, looks at the pile of bills, the undone dishes, the peeling paint on the outside of the house, the dust-bunnies of animal hair that need swept up, the laundry that need done and he says, "The hell with it. Why bother? Go take a nap. Sit back down and watch some more television."


Fast forward a couple of months and I exist in a different kind of limbic world. I have gone from the world of surgical recovery and dealing with the fact that I have cancer, and how that could impact my life, to a world where my cancer is almost an afterthought as I move further out from my surgery and recovery and further back into 'regular-life'. But, once again, I face the three personalities - in a different way. 


Mr. Screwit now looks at things from the perspective of, "Well, you better get busy living, or get busy dying." and his attitude pushes me to care less about others, about responsibilities around my house, about returning to my roles as father, employee and husband, because he is SURE that life will be shorter than expected, so I, at times would live very selfishly. I would stay up too late, party a bit too much and care much to little about anything other than myself. 


Then, maybe cause of my upbringing, or maybe because I have a good center afterall, Mr. Worrywart and Mr. Optomist would be able to get he rebel under control and help ground me. They would help me look at things from the perspective of someone who is on the path to beating this disease, again, and that this is nothing more than one more huge bump in the road that has been thrown in my path. Helping me to look forward to all that life has left to live... however long that may be.


Once again I return to the definition...


      3. A state or place of confinement.


As I have mentioned, I have been stuck....confined, either physically in the hospital, at home or attached to some piece of equipment for the past three months. Yet, despite the fact that these 'confinements' have been released, I am still stuck in the world of the cancer patient. I have not been 'cured' or deemed 'cancer-free', but just well enough to be teased by a return to normality, long enough to allow my body to  get ready for the next round of 'medical-confinement' of chemo therapy, hospitals once again. With no assurity that all this effort will not be in vain. I could very well end up in dire straights again, faced with a repeat performance of the recent past. I hope not (Mr. Optomist), but I don't know for sure (Mr. Screwit).


Finally, the last part, the difficult part, the part that there is no easy answer for...


     4. An intermediate place or state.

So, I have come full-circle, right back to the beginning, like a Gerbil on a wheel. Running, running, running, too stupid, scared, or worried to hop off and get on with things. The weird limbic journey on which I continue with my new friends; Mr. Screwit, Mr. Worrywart and Mr. Optomist continues later this week. Wednesday I get a port inserted - with the goal of making chemo adminstration easier - then Friday I start down the chemo-road again...this time with a new drug added to the mix. And for six more months, I live in this strange world where I never seem to quite know what is going on, nor can I see any way in which to control the path on which I will travel... 
More from one of us in the future...