"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...

Resting Between Rounds...

77 days, 23 hours 40 minutes --- this is how long I have been out of surgery, and have spent adapting to my new life as a 'ostomate' (see previous discussion).

In past posts I have discussed many things related to the discovery of my condition, lead up to surgery, the surgery experience, hospital and home recovery, cabin fever of home stay, doubts/pains/victories of healing, and the process of chemotherapy and radiation treatments. To put it lightly, I have been through a physiological, psychological and emotional wringer. So, I don't know just where this post will go but feel that it is necessary to keep posting, because, though many milestones are behind me, the battle is not over... To use some boxing terminology, I have completed the first three rounds; surgery, recovery and initial treatment, I am in between rounds now, catching my breath on the stool, waiting for the bell to ring for the battle to continue....

In my case this 'rest-between-rounds' is a chance to re-evaluate where my life is at, at the moment. Physically, my incision are has healed nicely, my new friend - 'Pedro' the stoma ' has healed into his new place on my belly, and seems to be functioning fine. I am learning his new habits, his schedule and how that affects my daily life.

Life with 'Pedro' HAS changed much of my daily and weekly routine. I now find that I have to monitor much more closely what, when and how much I eat, or Pedro will let me know -- watery flow, quickly filling bags at inconvenient times, and the like. Pedro also requires special care. I have to change his 'clothes' daily - small bag for the work day (more on work later), a large bag overnight, or when I am at home on weekends. In addition to this daily care, I have to change the 'appliance' - adhesive ring that holds everything in place twice a week. This process involves gentle washing with antiseptic soap, VERRRRY careful shaving of my belly around Pedro, so the device will stick. Careful cleaning and drying of the skin, and the final application of a new set of gear... a process, that as I become comfortable with it, takes about 10 minutes, start to finish, with about 10 minutes of laying calm, with my hands covering the new gear, allowing the adhesive paste and appliance to 'set' in place. So far, I have been lucky, no leakes, no 'blow-outs' just occasional itchiness from the hair that keeps trying to grow back under the bandage. So, living with Pedro so far has not been too bad....

HOWEVER... I am saddled (no pun intended, well maybe there is this time) this stupid would-vac and am sick and tired of dealing with it. Unlike Pedro, this thing requires much more effort - and considerable discomfort and the sooner I am done with it, the better. As much as I have named my stoma, Pedro, I have named the Vac, 'The Leech'. While I understand it's purpose to remove fluid and encourage cellular growth and speed up the healing process, it adds WHOLE NEW MEANING to the term, 'This Sucks Ass'....  Well actually, in my case, the role of the Leech is to close up what USED to be my ASS. So, in retrospect, sealing up something that has been a part of my anatomy for 48 years, should not expect to be a simple, or quick process. However, this has been going on for nearly 3 months now. The staff at the Wound Care Clinic seem to think that I am healing up quite well and quicker than they expected --- Really? Three months is 'quick-healing'? The pace of recovery is something I have struggled with all along, and they remind me that many of their (admittedly older) patients sometimes take six to eight months to be rid of this thing!

Management of the Leech requires twice weekly visits to the clinic, prefaced by the fairly ouchy process of removing the associated tape, foam, hoses and packing from the 'wound'. I have to do this by myself without the aid of being able to 'see' directly the area from which I am ripping the tape and foam... Maybe that is a good thing, because the area in question is quite tender, irritated and painful -- owing, I guess to the tape starving the skin from proper air circulation, and from fluids that may come in contact with newly growing tissues. As difficult as this process is, I am getting really tired of dragging around the actual vac unit and the hose that attaches it to me. Though the unit is about the size and weight of an old-style portable cassette tape player, the fact that I have to have it with me 24/7 is more than irritating. As you might imagine, I have caught the tubing on everything from door knobs, to seat belt buckles, to the head of a dog who thought he could slip through it. Only once have I actually ripped the 'puck' -mounting device from my hip, and thankfully that was the morning when I had to get it changed anyhow, I have been lucky so far.

So, as I sit here on the metaphorical stool, in my corner, breathing heavily, trying to regain my strength for the next round, I also reflect on my recent phase of treatment for the cancer. As I have noted, my treatment protocol has required me to deal with 28 radiation treatments, and over 100 pills of chemotherapy. This process, involved twice daily taking of pills, and twice daily visits to the Radiation Oncology clinic for the administration of X-Ray radiation - a process, strangely that was quick and painless (an actual treatment takes less than a minute once I am on the table). This time around my side effects were minimal - due to the nature of my cancer - I am getting lighter doses of both chemo and radiation, I was only queasy a few times and had some minor 'sunburn' type irritation on my abdomen (unfortunately right in the area of my surgical scar) and that was about it. Other than that, my only other effects were tiredness, and an inability to sleep at night... never getting more than a couple hours at a time  without having to get up and use the bathroom. All in all...as I evaluate myself in the corner... not too bad, considering what others go through in their struggle to beat their individual cancers.

The next part of this between round time has been getting back to work.

The process of getting ready to return to work was a bit nerve wracking... For the past few months I had not had to worry about uniforms, or workboots, or belts, or tools or company hat and coat, ID card, lunch box, etc. So I first had to gather all these things together so I would be ready to go. I wanted to start 'fresh' so I got up early, changed Pedro's 'clothes', tried on my new 'osotomy support belt' (which made me feel like a combination of a sickly old person, and William Shatner wearing his 'girdle' during the last couple of Star Trek Movies. After gearing up in my work clothes, discovering that bending over to tie my boots is still an 'abdominal' challenge. I made some breakfast, packed the car and off to work I went.

The first day back was light duty as I am now part of the 'Fire-Team' I spent the day relocating my desk to my new area, getting settled in my new space and reviewing a small stack of fire testing documents. I discovered that a challenge I will have with my new 'life-style' will be adapting my clothing to accommodate Pedro and his clothes... I got by this week by keeping one part of my shirt untucked to allow my bag to not be crimped by my belt... I think mounting it horizontally will help solve that problem. The next two days at work were much more challenging.... I am doing fire testing now which involves about 5 miles a day of walking, walking and more walking....by the end of day two I was pretty wiped out... I was very glad to have one day back in the office (thanks to one of the bi-weekly changing of the Leech!) I finished the week with one service call on my own (glad to discover I had not forgotten everything!), and learned more about testing at the panel. The only really bad experience was the need to drag around the stupid pump...

Looking ahead, I realize that my battle against cancer and my struggle to get back to a new reality, is far from over. Though I get a reprieve from treatment for six weeks (before 4 months of chemo), I will be trying to rebuild a normal life. Working, paying bills, managing family issues, getting things done around the house, prepping for the Old West End Festival and continuing with my goals of becoming an independent artist.

The challenge will be to maintain my visions, my newly defined goals while getting some balance into my life. Despite myself and my condition, I still have a family, boys to watch over, friends who depend on me (and onto which I depend), and getting back to 'normal' will be very important... So, ring girl, clear the ring, referee, ring the bell... Here I come for the next round.

Two Months As A Bag-Man

Life has had me busy adapting and slowly adjusting to life as an 'ostomate' - the technical term for a 'Bag-Man'.

Unfortunately, in my case the stuff in the bag is not money, as is the case of the Bag Men in the old Gangster Movies.

"Bagman is not a legitimate career choice." - Nancy Cartright


Becoming an Ostomate was definitely NOT a choice I have made for myself... And as for 'carrer choice' I hardly see how I can make a LIVING from this new lifestyle!

Bet that as it may, I am stuck with it. There will be no 'reversal' procedure for me to look forward to. No chance to return to 'normal'. I am stuck, forever, with a bag attached to my stomach that catches my poop. I can't say it any more simply than that.

Since my original diagnosis of colon cancer, I have had major surgery, spent days and days in the hospital recovering. I have spent many more days at home healing. Once the healing began, and I was starting to get used to all the new procedures that will shape my 'bathroom-life', I was thrust into treatment for the cancer that might have been 'left-behind' from the surgery.

So, now my daily routine is complicated with twice-daily drives back and forth across town for radiation treatment, chemotherapy has added 8 more pills to the 6 I already take to keep me 'healthy'.... AND several times a day I must stoop over at toilet and squeeze my poop from a bag into the toidy! Lovely.

Oh, let's not forget the VAC... the wonderful unit I have been carrying around these two months - and probably a month or two more - as the surgical incision where my poop-chute used to be works it's way to, uh... permanent 'closure'.... Try dealing with that one! Until the internal and external 'healing' takes place I also have to carry around a unit that sounds like a percolating coffee pot, or an annoying 5 year old, sucking the last drops of a milkshake through a straw.

Oh, and twice a week I get to go to a wound clinic where a host of nurses, unpack, and repack the 'wound'... again, a great way to meet people... "Hi, I'm [insert name here] and I will be packing foam in what used to be your ass, and taping it down along your butt crack to a spot on your hip where the VAC will suck various juices involved in healing into a tank you will wear 24/7..." - well, in their defense, while not using THOSE words EXACTLY, the care I have received - while embarrassing, has been excellent and professional.

As you can tell, this adjustment process has not been uncomplicated, easy, nor enjoyable. Necessary, vital to keep me alive, blah, blah, blah... I get it.

Over the past few months I have talked to many other 'ostomates' in various chatrooms, read and participated in blogs about 'our' shared experience, and tried to digest the advice of the others who have been where I am now... In addition to these people, I have also watched my Mom deal with this. She has had several more surgeries and 'baggings' than I have - and her experience has not been one I want to share. For her, the past 11 years have been filled with leaky bags, bags that 'blow-out' in the middle of the night, appliances that never 'stick-right' to her stoma region... all these things make me want to run screaming, covering my ears... saying, NO MORE!!! I DON'T WANT THIS!!!! WHY ME!!!

So, how have I been dealing with this? For me, I focus on a couple things that seem to distract me from the permanence of the situation. I have been experimenting with the variety of appliances, pastes, bags, bag positions, etc. to find a combination that will allow me to resume some sort of 'normal' existence. I have discovered the following about being a bagman:

1) It sucks.
2) BATHROOM TIME IS COMPLICATED - for you 'regular' people, you don't have to think too much about doing, umm. #2. You get to the bathroom, drop the drawers, and glance to be sure there is toilet paper on the roll. That's pretty much it. As and 'ostomate' I now must worry about several things. If I am using 'drainable-pouches' will the closure hold or will the velcro get caught on my clothing and sneakily leak the contents of the bag down my leg. If I am using disposable ones, did I REMEMBER to bring enough along with me to the restroom? Did I pack the right ones in my kit-bag? What happens if I don't?
3) It sucks.
4) BI-WEEKLY MAINTENENCE - for you 'regular' people, your poopy region doesn't really need much more care than a good washing, a good diet to keep things regular and avoidance of bad water while you travel or really bad Mexican food... I would WELCOME any variety of previous 'ailments' to this new life style. Twice a week (so far it's only been that often - I hear of worse experiences) I have to prepare a near surgical procedure just to keep things functioning.
After a good shower I now lay out the following: razor, shave/soap, baby wipes, paper towels, adhesive remover, adhesive paste, mounting wafer with bag, bag closing clip, stoma powder. I will save you the details, but suffice to say that if I am LUCKY my little friend, 'Pedro' (see previous post), will not be working during the 5 to 10 minutes it takes me to remove the old bag, shave and clean the surrounding area and remount a new one. All and all, if I take my time and follow the procedure, it hasn't been that bad.
5) It sucks.
6) TRAVELING IS A PAIN IN THE ASS...er STOMACH...er BOTH - while I know that EVENTUALLY I will be rid of the wound vac which makes SITTING in a car (or anywhere else) still  a fairly uncomfortable experience, my rides in the car are further complicated by the location of my stoma and associated bag position. Buckling up has become a difficulty. The lap portion of the seat belt lines up neatly with the EXACT location of my stoma! So my choices are, let it ride there, abrading the bag, the appliance holding it in place and the stoma itself, or don't wear the safety belt. Sadly the second option has been my choice so far. Maybe I will figure out another option as I move forward.
7) It sucks.
8) NO MORE BELLY-DANCING - NO MORE SIT-UPS - some concerns I have are more concerned with moving forward in the future than day to day living. Despite what I have seen on the internet, there is really no way to hide the FACT that I have a -something- attached to my stomach. If I am careful, order the right stuff, I can at least hide it's appearance - unless I want to take up hula, or belly dancing. I hear that working out is possible... with a special belt to hold my insides in - always preferable! I can only imagine how my return to work will go. I have many questions.
9) It sucks.
10) LONG TERM LIVING - well, if I make it through therapy and healing. If my stoma stays stable and working properly, maybe I will be one of the people I have run across on the forums or chats...one able to dish out advice that will help make living as a Bag-Man a bit easier, if not enjoyable, at least manageable. I hope that I am blessed with good fortune and that what remains of my (hopefully) long life will become more about enjoyment than about management. We will see...

"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 -