The Destructive Stew : Toss In Cancer, Fear & Depression

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

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

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

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

I call it the 'Self-Destruction Stew'.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I suddenly feel very, very alone.

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

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

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

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

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

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

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

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

The audience claps...

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

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

I have no choice, so I push the button.

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

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

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

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

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

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

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

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

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

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

Understanding 'Uncle Jack' (from Dancing at Lughnasa)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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