"Say hello to my leeetle friend..."

Alright... Next week will mark two months since I had the surgery that has been designed to save my life on one hand, and on the other hand has changed it forever.

Not that I ever was before -- many of my friends would agree -- I am not normal. As of March 4th I no longer walk the same path as other people. According to my research 500,000 Americans have ostomies. I can't even find data on how many of these people are in my age group... under 50. So, my status as an oddity increases.

Here I am, trying to figure out where things will lead. Over the past two months I have been existing in some kind of weird limbo. Physically, psychologically, emotionally.

It is difficult to summarize, but I suppose the easiest place to start is with the physical. As I have mentioned in other posts, when someone says that you are going to have major abdominal surgery and that you will need a long recovery time... Simply BELIEVE them. Believe every word they say. I had thought that I would be one of the in-and-out patients. Go into surgery, spend a day or two in the hospital recovering, maybe a week or so at home with my feet up and then return to work and my regular life. Ha, what a joke! The sad, ongoing joke has been on me.

Instead the surgery has left me light one entire colon, one entire sphincter and one entire rectum. It has left me WITH a new orifice created on my stomach and a wound where my butt-hole used to be that is reluctantly healing itself closed - never to be reopened.

As if this wasn't enough I have just recently begun a round of chemotherapy and radiation treatment for what ever cancer they might not have grabbed with the surgery. But I digress - this post is about my new life with my little friend and how it is changing the way I approach things....

First, while I was in Cleveland I was informed by a cheery nurse that many people with a stoma give it a name... like a pet... Gee, how FUN!! What if I get TIRED of the pet? Can I give it to someone else? Can I take it to the 'stoma-shelter'. Can I cap it with a .38? No... this pet I am stuck with forever...

Oh, and this pet is not a fuzzy one which will look adoringly at you, let you take it for a walk, or catch frisbees...no... THIS pet has the fun job of oozing my poo into a bag -- hopefully into a bag and not all over the place, like I hear from some people.

It does make its own special noises... It gurgles and burps and sputters. And, unlike a pet, I can't 'train' it to go outside and do it's business three times a day. I can't train it to let me know when it is time to 'go' . I have learned that I can make a GUESS as to when it will go...as I have discovered during one particular 'appliance' change when I found my self, almost comically naked, catching my pet's business with paper towels with one hand and trying to wash, shave, dry and prepare a new appliance with the other. Had it not been happening to me, I might have found it funny. In the end, I managed -- which I am discovering is what this process is...all about management. Since I am stuck with this new 'lifestyle' that of being a 'bag-man' or, the more publicly used term 'ostomate' -- makes me sound like some kind of strange pirate.... "Arrrrr... come here me Ostomatee!"

Back to the naming of my little friend... I decided to involve my youngest son. He has at least seemed marginally interested in learning what I am going through, what I am adapting to. So I discussed the naming process with him...
"Malcolm, how about you pick a name for my stoma? He will be with me forever, so he needs a name."
"O.K. Dad, I will think about it." he said, and then off he went to do whatever it is that hyper-creative 13 year old boys do...
A while later he came back.
"O.K. Dad. Let's call your stoma, Pedro."
"Pedro?" I say, "Why Pedro?"
"Well, since last year Cameron and I named the new tree out front, 'Lopez', I think we should name your stoma, Pedro!!!" Malcolm proudly announces. Giving me that look that says, 'Gosh, Dad you really just don't get it, do you?'
So, I - mistakenly - ask him, "How do you connect Lopez the Tree and Pedro the Stoma?"
He leaves me hanging, to ponder the connection with my obviously stupid adult brain.
Well, in the quiet of the afternoon, I ponder the origin of Pedro - the Stoma.

While I know that people live long productive, happy lives with a stoma, blah, blah, blah. At this point in my new journey, I'd rather just have it go away. I'd rather go back in time --- much earlier than November when I noticed - and ignored - earlier symptoms. Sometimes when I sit here, thoughts go through my mind. The what-ifs, the maybe-if-I-hads, etc., etc. I cannot go back and make it better, I cannot go back and make it go a way. All I can do is move forward.

Moving forward has been a challenge. Gradually I have been able to return to more normal activities. I have attended Art events, I have taken my dogs for walks, I have made long car journeys. Sometimes this has been easy, sometimes it has been a challenge. All the time I find myself forced to adapt to new situations.

I dress differently, I have a new bi-weekly routine for changing the bag. I am also experimenting with different 'bagging systems'. I am learning how to care for my changed body.

Everything changes. I can no longer sleep on my stomach, at all. I can no longer let my dog sleep on my lounge chair with me - something he does not understand - and from the look in his eyes - thinks is his fault. When I move I have to be careful of the bag getting caught, stuck or pulled off... Something I have not yet, but may yet experience. I have discovered driving and riding in a care is a literal and figurative pain in the ass - or well in what has become my ass. The stupid seat belt rides right over the exact spot where Pedro 'lives'. Again, something I will have to adjust to.

I will save the other aspects - the psychological and emotional issues of dealing with this new little friend for another post.... I'm tired and need to get some rest, Pedro and I.....

Adventures in Treatment

With the surgical removal of my tumorous colon, the construction and healing of my ileostomy and the slow but steady healing of the old opening on my bottom, I have been thrust into the world of Treatment.

For me treatment consists of radiation and chemotherapy.

Being that I am nearly two months past my surgery, I had hoped to return to work - money gets tight when you are not working - and in this day and age and economy - we have no bankroll to live off of. Poor planning on our part. After all, who PLANS for cancer? For major surgery? For weeks and weeks off of work?

In my case I am happy that I have an employer that is holding my position until I am healthy enough to return. I know many people who, faced with this similar situation, have not been so fortunate. Some penny-pincher in an office gets wind of 'catastophic illness' and all of a sudden they find themselves scooted out the door. That is why I recommend waiting until a week before ANY surgery to inform your employer, and only give them the most minimal information - nothing they could conceivably use against you.

So, feeling better, but yet still hindered by my wound vac, I met with my radiation oncologist who outlined the plan. And, it sucks. For my case I have to have not one, but two treatments per day! And, being a 'business' their hours parallel my regular job and there needs to be a minimum of six hours between each treatment... I am scheduled at 9 am and 3 pm, Monday through Friday, for 3 weeks. Great, that means if I am lucky I would get a work-window of about 4 hours a day. I headed to my employer to discuss my chances of getting back to work. In short, the answer was no. While they are happy to see me feeling better, they don't want me returning on a part-time basis. Crap. Three more weeks with no work, means at least five more weeks without a paycheck. Hmmmm, maybe I can sell a kidney on e-bay...

Prepping for radiation involved more tests, more waiting rooms, more waiting in general so that the nuclear techs can get everything ready to go. At the same time the nukers were getting me set, I was meeting with my oncologist to discuss chemotherapy. It seems things have changed from the last time I was treated, nearly twenty years ago.

This battle will begin with a different approach to chemotherapy treatment as part of the 1-2 punch to eliminate any cancer that may be floating around my system. This time I take pills at the same time as radiation. The radiation is 'targeted' to the area of concern (near where they removed the tumorous part of the colon) and the chemotherapy is more like a commando team, designed to float around my system and knock off any wayward Cancer cells that may be floating around my body, trying to find a new place to set up shop.

I must pause for a moment to talk about the economics of treatment. Because to those around the patient; spouses, friends, caregivers, this is often a part of the experience that is overlooked as people worry about outcomes, side effects, long term survival - seemingly the most important things to be worrying about at this time. As if you didn't know, fighting Cancer is serious BUSINESS. Let me try to give you an idea.

A little research and digging on the web shows that the pre-surgical testing and diagnosis was around $3000. The average cost of my surgery - a total proctocolectomy - is about $50,000 +-. This cost includes both the cost of surgery and post surgical hospital stay. Coming home I estimate that the three weeks of in home nursing care as I adjusted to the wound vac and learning to deal with my ilieostomy adds another $3000. Cost to my family - travel, hotel, food, etc. about another $2000. Monthly cost of 'durable-medical equipment' - tanks for my wound vac and associated supplies - $1500 (3 months so far), pouches, mounting wafers and associated supplies for my ileostomy $1000 (3 months so far).

Keeping track? To this point roughly $60,500 of cost just to get me to the point where I can BEGIN the process of actual TREATMENT for the Cancer. Now, it is true that insurance has covered the biggest chunks of this cost so far, but I have nightmares thinking of how people who are not as fortunate as I am to have both a job (waiting for me) and an employer that provides medical benefits. What do these people DO!!! To be sure the 'uncovered expenses' have been very difficult for us to absorb, especially since I have been out of work now going on two months (about $4000 lost income). Were it not for the ability of my wife to turn to her 401K for a loan, and the gifts of money from friends and family, things would be worse than they are. But, unfortunately the picture does not get much brighter...on to treatment...

All righty then...on to the second part of this battle... Treatment.... Since I am already sitting on a big pile of bills that will be next to impossible to pay --- I tell the bill collectors just that... "Hey, look. If I am DEAD you get NOTHING! If you allow me to be treated, and get healthy I can get back to work and send you SOMETHING!" Let's look at the associated costs of the dual treatment I am getting - radiation and chemotherapy.

A little more digging on the web allowed me to discover that my 15 days of radiation therapy averages about $30,000 -- and that is in 2005 dollars, I am guessing it may be closer to $50,000 today. This time around too I have to go to treatment twice a day --- which keeps me from working for 3 MORE weeks --- read another loss of about $1800 in income --- just for fun, given gas prices throw in a tank of gas a week - another $150 or so out the window.

Now for the fun part... This time around my chemotherapy treatment will come in two parts... the first will be in pill form and last 15 days -- taken at the same time as radiation, because, as I have mentioned, the two seem to be more effective when used together. When I met with my oncologist I found out that I had to call the 'special-pharmacy' which will handle delivering my pills to my home -- here is where it gets interesting, when we look at costs... When I made the call, I spoke with the very helpful receptionist assigned to me and discovered the following... the CO-PAY for my medication - two types of pills - same medicine - 500 mg tablets and 100 mg tablets, was $70...for BOTH! I am thinking SWEET, what a deal, right? Then he dropped the bomb on me; "Mr. Lightfoot, you will want to be sure to be at home when the medication is delivered, because if it comes up 'missing' for some reason you will be responsible for the entire cost of the medication, should it need to b replaced." What is the cost? wait for it....wait for it..... are you sitting down.... $2700 !!!! I about crapped my pants.... Oh, wait. I can't do that anymore... Anyhow, doing a little math here is the cost of the pills: 6 x 500mg, and 2 x 100mg per day...for 15 days... that is a total of 120 pills.... which works out to $22.50 per pill!!!

After completing this 15 day process, I get a break.... 6 weeks with no zapping, no pills, only one or two 'routine' office visits to monitor blood counts and such, then I have to return for MORE treatment... Figuring out the cost of this phase is a little more difficult, because I don't have the details, but I think it involves, BOTH some IV medication and some more pills taken over a 4 month treatment, so I will wait until I have more information before I hazard a guess.

Once I complete this phase of treatment I will be 'evaluated' - read MORE TESTS, more BIOPSIES, to see if I have beaten - kept at bay, the cancer... That will put me into October....maybe by by birthday on the 4th I will be 'done-enough' to declare me 'cancer-free' once again.

In the end, should I survive this process -- both physically AND economically, I will be both suprised and happy. I just hope it will all work out... I'd like to say I trust in 'God' to take care of it, but all I CAN do is trust in my medical team, my family and my body to tolerate not only the physical treatments but the psychological stress and strain that goes along with the entire process...

"...Everybody needs a MONTAGE!" - Second Battle (Part 1)

O.K., so suffice to say that during the last 7 weeks I have watched a lot of television, watched (and re-watched) a lot of movies, while sitting in the confines of my living room have imagined myself (sometimes due to good meds, some times due to exhaustion!) appearing on various shows, or in movies...

At this point in my Second Battle, I have just completed Part 1: Surgical removal of the tumor, recovery from surgery, and evaluation and planning for Part 2: Chemotherapy and Radiation. So, this would be as good a time as any to review --- through the cinematic device of the MONTAGE! For this project I would want Quentin Tarentino as my director --- I like his style, extreme close ups, use of black and white, choice of music.

NOTE: this post is 'interactive' - click the links to enhance your experience!
NOTE: THERE IS SOME SPICY LANGUAGE IN THIS POST


Here is the script....

ACT 1: THE PROBLEM

NOTE: This film would be shot in fast-motion, kind of like 'Thirty Second Bunny Theatre' (if you don't know what this is, google it... the films are quite funny.)

ESTABLISHING SHOT: fade up to the exterior of a bathroom door, a man behind the door making those all too comforting noises that we all make (think Robin Williams in 'Fisher-King').

MIRROR IN THE BATHROOM

SCENE 1: close up of man buckling up trousers. He turns looks back at the toilet.
SCENE 2: close up of man's face, eyebrow raised quizzically.

SCENE 3 & 4: repeat SCENE 1 & 2 using different doors/stalls.

SCENE 5: close up of man looking up phone number of Doctor in phonebook.
SCENE 6: close up of hand dialing phone
SCENE 7: close up of mouth talking on phone

MAN: "Doctor, I have a problem." [spoken with Apollo 13 intonations - hey, Maybe TOM HANKS could play the man?]
DOCTOR: "Well, I can see you in....."

SCENE 8: close up of hand turning calendar pages
DOCTOR: ".... three weeks."

SCENE 9: close up of furrowed forehead/eyes
MAN: "What the hell? I'm bleeding out my ass and I have to wait three weeks..."

SCENE 10: close up of clock spinning, passing time/calendar pages flipping by.

SCENE 11: high speed footage through the windshield of a car driving to and arriving at a Dr.s Office.
SCENE 12: close up of man signing in on a clipboard, handing over ID and Insurance card.
SCENE 13: close up of frustrated face
SCENE 14: close up of spinning hands on clock, or wrist watch

SCENE 15: medium shot (no face) of doctor (person with stethoscope over the neck), flips through charts.

DOCTOR: "Hmmm...you need tests to see what is going on."
MAN: [under his breath] "Duh, I coulda figured that one out."

I DON'T NEED NO DOCTOR

SCENES 16 thru 19 [repeat SCENES 11- 14  using a different medical destination.]

SCENE 20: close up of man changing from street clothes into hospital gown.
SCENE 21: shot of man laying on hospital gurney.

NURSE ENTERS: "Hello, we will be with you in a moment."

SCENE 22: close up of spinning hands on clock, or wrist watch

SCENE 23: close up of frustrated face

-FADE TO BLACK-

< Go get a cup of coffee and come back for the second part!!! >

ACT 2: THE ANALYSIS


-FADE UP FROM BLACK-

SCENE 1: high speed footage through the windshield of a car driving to and arriving at a Dr.s Office.

SCENE 2: close up of man signing in on a clipboard, handing over ID and Insurance card.

SCENE 3: close up of frustrated face

SCENE 4: close up of spinning hands on clock, or wrist watch

SCENE 5: medium shot (no face) of doctor (person with stethoscope over the neck), flips through charts.

DOCTOR: "Uh, Mr. Lightfoot. You have colon cancer."

CANCER

SCENE 6: [flash footage of various panic faces, people screaming, wetting their pants]

MAN: "What the fuck?"

MAN: "What the hell did I DO to get THAT?"

DOCTOR: [close up of more chart flipping] "Hmmm... I don't know. It seems to be genetic."

SCENE 7: [insert video clip from Zombieland, 'It's amazing how fast the world can go from bad to total shit storm."]
DOCTOR: [more chart flipping] "Well, the tumor has to come out. We need to schedule the surgery."
MAN: [close up of big sigh] "O.K., when?"

DOCTOR: "Well, I can see you in....."

SCENE 8: close up of hand turning calendar pages

DOCTOR: "How about a month from now?"

SCENE 9: close up of furrowed forehead/eyes

MAN: "What the hell? I have CANCER and you tell me I have to wait a MONTH for surgery?"

SCENE 10: close up of doctor hands tapping a pen on a calendar date

DOCTOR: "Sorry, that is as soon as they can get you in."

SCENE 11: man walks out the door to the parking lot, leans against his car.

SCENE 12: close up of hands fumbling for and dialing a cell phone.

MAN: [with phone at his ear] "Hello, honey..... I have cancer."

-FADE TO BLACK-

ACT 3: THE OPERATION

-FADE UP FROM BLACK -

MAN IN A SUITCASE

SCENE 1: close up of man's hands packing a suitcase.
SCENE 2: close up of man walking with suitcase, tossing it into the trunk of a vehicle.
SCENE 3: footage of highway driving, lane lines, mile markers, sings for the Cleveland Clinic
SCENE 4: close up of feet walking up to desk
SCENE 5: close up of signing in at desk

SCENE 6: close up of frustrated face

SCENE 7: close up of spinning hands on clock, or wrist watch

SCENE 8: close up of man changing from street clothes into hospital gown.

SCENE 9: shot of man laying on hospital gurney.

NURSE ENTERS: "Hello, we will be with you in a moment."

SCENE 10: close up of spinning hands on clock, or wrist watch

SCENE 11: close up of frustrated face

SCENE 12: shot up from gurney being pushed down hall, into room, doctors and nurses around

NURSE: "O.K. Mr. Lightfoot. Count backward from 10."

MAN: "Ten, Nine, Eig....

FINAL COUNTDOWN

-FADE TO BLACK-

ACT 4: RECOVERY

-FADE UP FROM BLACK-

SCENE 1: opening eyes, from blurry to focus. Nurses and WIFE around bed.

WIFE: "Good, you're awake. The surgery went fine...."

WIFE: "....but they couldn't save the sphincter."

MAN: "Wh -, What? Why not?"

WIFE: "The cancer was too involved."

MAN: "Shit. Wonderful."

SCENE 2: eyes fade back into sleep.

SCENE 3: eyes open from blurry to focus. Looking at tubes coming from arms, bags hanging from IV pole, monitors beeping.

SCENE 4: clock spinning

SCENE 5: calendar flipping

SCENES 6,7,8,9,10,11: loop SCENES 3 thru 5

SCENE 12: doctor comes in and shakes the hand of MAN

DOCTOR: "Congratulations, you get to go home!"

MAN: "Really? Finally? No more delays? No more tests? Great."

SCENE 13: man changes from gown to street clothes.

SCENE 14: close up of man being pushed in wheel chair.

SCENE 15: close up of man getting into vehicle.

SCENE 16: shots of traveling down the high way.

SCENE 17: shots of Toledo sign.

SCENE 18: shots of street level driving.

SCENE 19: close up of walking into house, settling down into chair.

BODY MOVIN

-FADE TO BLACK-

< Go to the restroom, refill your coffee and come back for the conclusion!!! >

ACT 5: HOUSE ARREST

HOUSE IS A ROCKIN

SCENE 1: sun comes in window, man gets up dresses, goes downstairs.

SCENE 2: man makes a pot of coffee, goes to chair, sits down.

SCENE 3: close up of man drinking coffee, then hand pressing buttons on TV remote.

SCENE 4: man stares at TV

SCENE 5: spinning clock face / fast forward through TV show

SCENE 6: man getting up from chair, moving to another one.

SCENE 7: WIFE or KID bring man bowl of food / beverage placing them on table next to him.

SCENE 8: man stares out window

SCENE 9: man gets up from chair, moves to bathroom, closes door.

SCENE 10: man brushes teeth, goes to bed.

REPEAT SCENES 1-10 at least 4 times...playing the images faster each time

-CROSS FADE TO CALENDAR FLIPPING, then transition TO-

SCENE 11: driving to doctors office.

SCENE 12: walking in

SCENE 13: doctor walks in with chart

DOCTOR: "Well, Mr. Lightfoot, it has been nearly two months since your surgery."

SCENE 14: doctor flips/taps on charts

DOCTOR: "You seem to be healing well. So let's begin Radiation and Chemotherapy. I think you are ready."

MAN: "Thanks..... a lot."

DON'T WORRY

- FADE TO BLACK -

"You Will Experience Lifestyle Changes" -- Really? You think?

So, here I sit in my living room, my recovery continuing, my life now revolves around my medical condition - two trips to the wound care clinic for vac chagnes each week, two changes of my ostomy bag a week. Almost constant worry about some complication or some problem that may develop with my new belly mounted orifice - that will be with me for ever now. Some days are bad, some are good. As things heal, I begin almost to become accustomed to the new 'lifestyle' that being an 'ostomate' - a new word learned through chat groups on the internet - but, I have not returned to work. Another hurdle to be faced. While my employer has been patient and supportive during my surgery and recover, how will this new set of circumstances affect my work? Will they fire me if I have problems? Will they expect more of me than I can offer? Will we be able to compromise on working conditions when I return... All questions I face, hopefully in the next few weeks.I am not sure where this blog will go, but felt the need to examine my new, emerging 'lifestyle', and to reflect on other 'lifestyle' changes that mark our march from birth to death.

I'd like to reflect a bit on the experiences that we share, as human beings in our society and how we never quite know where we will end up or what kind of 'life stlye' we may end up living with.

Most of our lives we share the commonality of experience that, given some variation to family structure, ethnicity, culture etc., which defines us, unites us and allows us to have an understanding of our human condition.

For most of us we think of regular; birth, rolling, sitting, standing, walking, talking, going to school, going on to college, or work, marriage (for some), raising kids (for some), working, retiring, enjoying our golden years and, eventually, a return to the earth. Corny, but it is the cycle of life. There is pretty much no getting around it.

What has become evident to me in my 48 years is that though the end of the journey is the same, "No one here gets out alive." - Jim Morrison. What DOES happen is that the path we take differs widely and THAT is what makes all unique, makes us all interesting, makes us all individual. Nowhere is this more evident than our medical experiences.

Again, looking at our unified experiences, most of us, in the developed world, share similar experiences; innocculations, shots, etc. these stave off the most serious of conditions, yet we seem to still share chicken-pox, ear infections, tonsillitis, sprains, strains, stitches, fractures and breaks. Take a moment to look over your body... you can quickly do a 'timeline-of-medical-experience' just by recalling all the scars, dings, and scuffs that are evident on our bodies.

Beyond these basic shared experiences, there are others of us that share other medical experiences that go well beyond the norm. Hopefully, we are able to avoid things like mumps, measels, mononucleosis, pneumonia, appendicitis, and more serious conditions relating to the heart, or other organs, or even cancer.

Depending on the severity of the ailment, those of us who have been dealt a more challenging medical hand of cards, often relate to other aspects of life much differently than those who are NOT as medically challenged...

As I have mentioned in other posts, we all deal with these things differently, for me, sharing my experience by talking with friends and family - trying to share what I am going through - is my way of processing the myriad of feelings and emotions that are part of dealing with serious health conditions.

I come from a family who HAS experienced a lot of medical issues - many instances of cancer, respiratory problems, challenging child births, hear disease, etc. In the end, not TOO different from many other people I am sure. In my case not one, but two cases of cancer, have taken my life in different directions from what I have had planed. Looking back, these 'lifestyle changes' have added remarkable depth to my life - much of which I would NEVER have had the chance to experience had I NOT been faced with these medical challenges!

Twenty years ago, I was happily working as a photographer and photo lab technician, holding on tightly to several part-time jobs, trying to make my way mark in the field when I was struck with my first bout of cancer. At that time I was 28 and would say that SHOCK was the predominant emotion I was feeling.  I mean, I didn't smoke, didn't drink more than others my age, my diet was as consistently 'American' as the next person, yet here I was, facing the 'C' word.

With my wife at my side, we faced things together. The learning curve was steep for me, and that also meant becoming a teacher to others as I dealt with the whole expanding world of medical terminology I had to learn and understand; radiation therapy, surgery, adenocarcinoma, chemotherapy, 5-FU, Leucovorin, Compazine, nausea, diarrhea, weight loss, fatigue.

During the nearly two years I spent in treatment, I suffered ill treatment from one boss, followed by a new, more understanding one, who allowed me to work around my treatment, and it's effect.

Lifestyle changes... man... if you have not been through it personally, or been WITH someone who has, you really don't 'get-it'. But for me, this was life changing. The doctors tole me that after all I would be going through, there would be a 1 in 4 chance of not being able to have children. Since my wife and I had been married for a while, and had considered when to start a family....this seemed like as good a time as any to, try! And, as fate would have it, we made a baby! Part of the comedy of this time was that my wife was pregnant during much of my treatment and we joked who was more sick or more tired, in fact, the humor extended to my care team. They would ask me, when I came in for an appointmen.. "How is Cheryl? How is the baby coming along? Oh.... you are here for YOUR appointment..!"

I could not have gotten through this process without them - my care team, and my wife and growing child. More life changes after the birth of Cameron, our first son.

Dealing with cancer changes your outlook. If you are lucky to survive the treatments and move on, you never know what life will bring your way.

My first move after getting the 'all clear' after my two years of treatment was to look for more work - this was the early 90's mind you -- very much like this decade -- where work is hard to find, and you often take what is available, because you need to. For me, that meant a stretch. I applied and was hired, as - of all things - a manager of an Arabian Horse Ranch! Talk about a life-style change! In less than a few months from the end of my therapy, I had made the jump from news photojournalist to stall cleaning, horse grooming, facility management!!! Looking back, I was blessed with all but the horse-knowledge that this job required - a lot of light carpentry, hard, outdoor labor repairing fences and buildings, working with and repairing small equipment and lots of landscape work... I was fortunate that the man I worked for was patient, yet demanding, willing to educate me on the world of the horse, and in the end, he became as important to me as my father and father in law. There are too many stories to indicate the uniqueness of this relationship, so I may leave that for another post.

Like a long journey on horseback, eventually you get a little saddle sore, and need to hop off the horse and do something else. So, after a few years I left the ranch job, returning to photography and graduate school where another lifestyle change occurred. I now was back in the role of graduate student, photographer for a unique program through the university, still a husband and father - Cameron was now 4 years old. This change put me back in to the working world of photography while I pursued my Masters in Education. This went well until life threw more challenges my way. This time, a series of illnesses, deaths of relatives, a second child on the way, the purchase of our first home, the death of our first 'pet'. Needs change, opportunities come and go and (my least favorite saying) 'new doors open when others close' - for me, that meant my new employment shift into the world of education.

With funding cut for my graduate program I needed work, and soon found myself immersed in the world of education -- I had become a Physical Education teacher, and then quickly after that I was offered a position of Computer Teacher as well. Again, life seems to take over - as this path was surely NOT on my career horizon when I graduated from Ball State.... "necessity is the mother of necessity!" We do what we do, many times, not what we want to do when it comes to work. So, for several years I built my skills as a classroom teacher at several schools - most years splitting my time between 2 or 3 buildings to get to that 'full-time' employment status. Our kids were growing, Cameron was in elementary school, Malcolm (our second son) was a growing toddler who had his own developmental issues that we found ourself dealing with too. Time passed and things stabilized, and life seemed to be settling into a predictable rhythm.

Again, another lifestyle change. Some things we can predict, some we cannot. A new set of circumstances rises, complicated by the untimely death (when is death 'timeley'!) of my father devastated me and during the same time my teaching position evaporated under me and I was cut loose once again, drifting, trying to find a job, yet another pathway to meeting the needs of my family.

You THINK, when you are in the early stages of your 'career' that you can map out exactly where you will be and 25, 30, 35, 40 years of age... But, for me (and I expect most) that is HARDLY the case... For me, my job search lasted for about 3 short months - an uncertain time that was very distressing, until I was on the verge of becoming --- a Railroad Engineer --- I had actually had a second interview for a position the position, when I received an offer for a position as a Technology Director at a local Arts-based school.

Lifestyle change - again. Though this position was continued my work in education, it also allowed me to rediscover my creative energies -- I became the photographer for school events, worked with students in Art, Music, Graphic Design, in addition to my assigned duties as Technology Director. In short, this was shaping up to be my perfect job, and had I been more diligent, I might have been able to stay ahead of the eventual 8-ball of required certifications and been able to continue on -- but life changes!

In so many ways, this job was perfect for me and that perfection lasted for 5 years before coming to a crashing end when it was determined that I no longer had the proper certification to maintain my employment (for MUCH more on this part of the journey see my other blog - www.shockinglyunemployed.blogspot.com).

Lifestyle changes - during my 'hiatus' - isn't that what the rich call it when the don't work for a while? - I rediscovered my love of art. My love of doing custom illustrations, and rediscovered my roots as a artist and realized how much this passion had been held in check - behind everything else for so long that it was almost an epiphany of sorts when I reconnected with my creative side. But, more on that later too.

I suffered through the challenges of the unemployed for nearly 10 months - the ups and downs, the freedom and the frustration, and eventually landed work as an installer of Satellite Dishes -- another path I would not have guessed... To be very brief, this job was a nightmare, and I KNEW I had to find something different and quick, before bad weather set in! After a few months, and with the encouragement of my wife I applied for a job as a security systems installler - again, another job I would never have predicted!

This new position has been very rewarding. Challenging, both in the learning of new information, and skills and a nice balance of indoor and outdoor physical work that I could see myself doing for a long time. I had been progressing nicely, learning the job, becoming more confident in my skills, began being given more responsibilities and enjoying being at a job that offered so many good things and really fit my lifestyle - reduced travel, my office was near my wife's, regular hours, predictable pay, good working conditions and good people to work with and for... Then, in November, I start experiencing a recurrence of old symptoms.

Lifestyle changes - at first I tried to ignore them, they would come and go, but as they got worse I realized that I should get things checked out, and lo and behold, I end up in this Second Battle. Dealing with an entirely new set of changes, new experiences, new fears, and hopes, new things to adapt to.

Lifestyle changes - here is the kicker. Shortly after I return to work I will be facing the second part of this battle... more radiation and chemotherapy to treat what may be left of the cancer in my system. At last report, I was TOLD that the cancer was contained within the colon and did not involve lymph nodes or other organs... but I get the strange feeling that this may not turn out to be entirely true... I don't know why, but I feel that, given everything else I have been through, that the actual treatment phase of this battle cannot be that easy... a few weeks of radiation, a few months of chemo, then just annual check ups... If it IS true, that would be cool... but I am skeptical.

So, this next week will be pivotal. I have appointments with radiation oncology, my regular oncologist, and my regular physician who will determine how the next few months will shape up. I HOPE to get the all clear to return to work, and to get rid of this stupid wound pump which I have to drag along all the time, and move on to what ever my new definition of 'normal lifestyle' will shake out to be!

Keep your fingers crossed.

Cabin Fever: Bed'rest' or House Ar'rest'???

Today marks three weeks home from the Cleveland Clinic hospital, where the proctocolectomy procedure was performed - colon and tumor removed, ileostomy constructed and I was stitched back together. With the hospital-recovery process behind me, I have moved on to further recovery at home. While being home is pleasant, the process of recovery has been, and continues to be, slow, punctuated by pain and pretty much continual discomfort of some form or another, I like to THINK that I am making progress.

As much as my hospital experience was controlled and run by the baffling schedule of tests and procedures designed - if not to let me actually rest - but to continually monitor my progress, my new schedule at home has it's own rhythms that I need to adjust to.

Masked by the mental-narcotic of being in my own 'space' for the first few days, the actual pain I was feeling at home was minimized a bit, well with the aid of meds too, so getting adjusted to sleeping in my oldest kids room (he being at college), this way my stirrings would not disrupt my wife's sleep, and, we figured being on bed rest in his room would make for easier access for the home nursing care I was to receive. So, there I lay, waiting... not much too do.

My abdomen was much more tender than I had imagined, and looking down at my belly was not very encouraging. Where I used to see a smooth, though hairy tummy leading from chest to my belly button, now there appeared what appeared to be the remnants of some sort of physiological battle zone. I now had a zig-zag of incisions, sealed with 21 stainless steel staples (yes I counted them...not much more to do, laying there, bored - more on THIS later), the strangeness of the ileostomy that I could see through the bag now attached to my belly, and finally another bandage covering yet another wound between my belly button and, my, well, nether regions where the abdominal sump was attatched in the hospital. Man, what a mess. I now understood much more fully why every move hurt and that recovery WOULD take much longer than I had initially figured.

If this wasn't enough to deal with, I have had a device called a 'wound-vac' attached to what used to be the, uh, 'exit-port-region' for digested food. The surgery I had resulted, not only in JUST removing the colon, but my entire poop-chute region, and therefore required the permanent surgical sealing off of this area. But (no pun intended), this is not as simple as sewing up a hole in your favorite jeans, no, that would be too easy, and therefore NOT something allowed for me to experience. In this case the 'exit-wound' as it were requires continual drainage in order to heal, and this machine attached supposedly cuts down the healing time from months to weeks. While this SOUNDS great and encouraging, it is not like putting a band-aid on a boo-boo. So the outlook is not great. I have already spent nearly 2 full weeks in the hospital, and am apparently looking at 3-6 MORE weeks at home, recovering.

Much like the IV lines in the hospital, I am now 'tethered' to this machine, and my movement is limited to bedroom, bathroom, living room and kitchen. That's it. Not healthy enough to move much, in no condition to GO any where, nothing to do but sit (uncomfortably) and wait for my body to heal.... Bed Rest = House Arrest!

Moving forward from 'Homecoming' on March 15th to the present, how have I spent my time? Not that I have spent any time in prison, but despite access to better food, my family and friends and comfortable accommodations, my schedule has been pretty structured; here is the Reader's Digest version. Note that I don't really put CLOCK TIMES on the list, because I not only has my body been recovering from surgery, it has to re-set my biological clock, which has been disrupted for the past two weeks in the hospital, and now that I am home, it has to 'heal' as well, making things even more complicated.

Bed-Rest/House-Arrest Schedule
WAKE UP : - weirdly starving I pull my self ever so slowly out of bed, make a restroom stop, then head to the dark kitchen - trying not to make too much noise - don't want to wake the family or the dogs.
BREAKFAST : - brew up some fresh coffee (one of life's pleasures!) make a ham and cheese bagel, take the morning pile of meds with some juice.
SITDOWN #1 : - with coffee and breakfast in hand, I settle down into my living room chair, taking several minutes to adjust various pillows and a blanket, I turn on SPORTS CENTER or an old movie, eat my breakfast, wash it down with the coffee. By then the Vicodin has set in and I am off to....
NAP #1 : - I wake up - about mid morning - hungry AGAIN...must be from not eating much of anything for nearly two weeks.
SITDOWN #2: - so, I make a snack, settle down in my chair again, it is, depending on the day, time for either House, The Sopranos, or a Karate Kid Movie (not that I'd watch it of course), with food in the tummy I am off to...
NAP #2 : - I wake this time, nearly time for lunch, so I get up try moving around a bit, discover that anything more than about 10 steps at a time makes me feel like my insides are going to fall out, so, I grab a pain pill, settle back down into my chair and I am off to....

You get the picture. Mornings - food, uncomfortable seating, naps, meds. Wash, Rinse, Repeat. Actually for the first couple weeks the afternoons, and evenings are not much different... The Television programs change - I got to watch more basketball than I have in probably 5 years! But that is it... Imagine, if you will, the only variation being which CHAIR I sit in, what position I get myself into and how many times I have to get up and down to relieve the discomfort from this wound vac! My youngest asked me what it felt like to have this vac attached to me all the time. I thought about it, and what came to mind is this. I told him, "Well, remember when you had a 'wedgie'?", he said, "Yes! They hurt!", to which I responded, "Well, imagine that feeling 24 hours a day.", he said, "Ow!" and walked away. I couldn't agree more...

Despite this medical confinement - my pump - kind of like an ankle bracelet that Junior Soprano is forced to wear during his house arrest - my time is kind of broken up by the twice weekly visits of my vac-nurse who performs the ouchy task of changing the dressing. I will spare you the details, but say that a vicodin induced nap follows her visit. My ostomy care nurse also visits to assist in changing my new 'appliance'. The word 'appliance' almost makes it seem like it is somehow less, uh, invasive that it is...WRONG! It is, however, something I have to learn to deal with, for the rest of my life. Of all the things I am dealing with, strangely, it seems the easiest to manage of all the stuff I am dealing with.

So, as you might guess, during the last week or so I have been looking for ANY way to get out of the house for a bit. In the past week I have moved up to 1/2 mile walks in my neighborhood, brief trips out to my garage to retrieve art supplies, and finally, last weekend, I ventured out to an Art event and lasted about 6 hours before needing to return home. The other thing that has helped during my 'confinement' is the visits from friends, willing to spend some time with me. Heck, last weekend I actually was able to stand at the grill and cook a dinner for some special folks, who I cannot thank enough for keeping me sane during this time!

Now that I am more mobile - despite my wound-sucking-pump gurgling away at my side, I am able to begin doing some small projects, studying for an exam for work, and even, returning to my efforts at blogging. I look forward to continued recovery, and the ability to get rid of the pump, and free myself from this medical house arrest and get back to normal stuff.

Unfortunately, this will be a slow process, and I am trying to be patient....