"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...