Second Battle

The Story's End

2012-12-09T12:48:00.002-08:00

The following is a post from Cheryl, Scott's wife. Many people have followed Scott's journey as he was diagnosed and then struggled with a cancer that would not quit. He put up a mighty struggle, but finally was able to be at peace this past Monday, December 3rd. He did not want to give up, believe me, but he fought as hard as he could so we had to let him go.

His fighting spirit, humor, passion for life and ability to say exactly what he was feeling are just a few of the things that will be missed about him. He leaves behind two sons, a mother, brother and two sisters, and a legion of friends who will miss him terribly.

I received many condolences over the past week, and all were very helpful. One in particular, though, really touched me. One of his former students, a good friend of my older son, said that he would now be able to paint the sky. So from now on, whenever I look up at a gorgeous sunset or exquisitely pink and purple sunrise, I will imagine it is his gift to us.

On a personal note, I would like to say thanks to all who enjoyed his writings and supported him in his fight. On a more personal note, I want to say how utterly I love him and will miss him in my life.

2012-11-17T09:09:00.002-08:00

PATIENT NOTES : December marks a personal milestone for me, I have been fighting this cancer for nearly two years, and you would think that I would have become a defacto expert, on at least MY cancer. The sheer volume of information that is released is mind-boggling. Even for my curent drug which is so new that there are only a handful of other patients on thus protocol,,,, So, once again I find myself, like a sea-captain, on the prow of the 'H.M.S. Trial and Error', Flag flying in the breeze in one hand and a wonky compass in the other - never quite steering me wright direction.

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Well... I have been taking my new drug - Stivarga - for one complete cycle (21 days on the pills, now starting a week 'off' of 7 days.

What have I experienced? The first couple of weeks were much like time I spent on Vectibix - nothing unexpected - foot pain, exhaustion, lack of sleep, and mouth sores. Mental stress, confusion and psycological panic attacks have also been a surprise. But with the help of counseling, I seem to be managing O.K...

Now comes week 3..,.. Things get worse... I woke up last Friday and discovered that my feet had swollen and my legs and muscles were in serious pain. And, just my luck, due to the Holiday I couldn't get to the doctor to get magic scripts, so I just weathered the storm and waited until Tuesday - the end result!!!!! BING!!! An extended release Morphine Tablet for Pain and an pill for the expulsion of water from my system... The Doctor told me to be 'patient', it is soooo, seemingly easy for those words to slip from his mouth. I dutifully pick up the meds pop my pills and thanks to Mr. Morphine, I slipped into a deep medicated nap.

Skip forward to today and things seem to be 'normalizing', but I am still in a lot of pain. Another important aspect is my efforts to return to my art-work. I have transported some of my marker/ink supplies inside. It's not ideal, but I CAN get some things done, which makes me feel a little better.

That is it for now, I will keep you updated on my 'off-week' experience... Have a good week.

Why Bother...

2012-10-26T16:19:00.001-07:00

PATIENT NOTE : I have now been at this struggle for nearly two years. If you have followed the blog, the journey has been challenging, enlightening, devastating, occasionally entertaining and a host of other -ing words that describe the journey. As you can see there has been a huge 'gap' between my last post and this one. Explaining this is not quite simple. So, I will just say that the life of a patient in many ways is beyond our control and sticking to even the best made schedule has become at best impossible... I think that THIS is one of the toughest challenges a patient faces. I will even go so far as to recommend to others that you just don't waste much mental energy on running your life to the minute. I am blessed with a wonderful family and fantastic support group of friends who, without their presence in my life I would most likely be dead from exhaustion just trying to keep it all together. I have also been lucky (as I have mentioned before) that the side effects for me have not been debilitating in the least - comparatively. Given all this, where does that leave me?

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Someone asked me once, how having cancer has changed my life. Answers came flooding in, but before long my head was swimming so I needed to take a moment to figure out how to come up with a response to my friend's question without sending them screaming from the room with madness, or putting them into a coma induced by excessive detail... Here goes. Having cancer brings everything in your life to an absolute crushing halt. It sounds simplistic, but the rest of the world keeps speeding on ahead as usual as my world is completely brought to a stand still. Imagine one of those huge boulders in the desert that seem to have been just placed there. Perhaps an even better image is that of a large Zen boulder/gravel garden. The swirling patterns of pebbles around the large stones is a good example of my day to day life at times. I feel 'stuck' among the rest of the world, destined to weather things by myself, unable to move with the flow. I feel like some kind of schizophrenic actor where on one level I try to maintain the image that I am flowing along with the 'normal' world; paying bills doing work, doing all the other regular things that people do. However, the other face, is my private one, the one no one sees, the one that occupies MY 9-5. This one can get really, really ugly. It is SOMETIMES a good place, but it is getting harder and harder to discover the good in my space. Why? You can probably guess... If, during the past two years, I had had ANY indications that my cancer was controllable, maybe keeping my chin up would be easier. But, it simply hasn't.

I try to look for positive answers, things around me to give me hope, and for the most part it is all seemingly melting into a big vat of cliche-driven bull-shit. Now, please realize that this in NO WAY is a reflection on the support I have received from family and friends during this time. Without their support I am sure I would have already given up and not be here. Like the boulder though. I sit, I sit, I sit. I wait. Hell most of the time I could not tell you WHAT I am waiting for anyhow. Am I waiting to feel 'sicker' - since I don't 'feel' like I have cancer? Am I waiting for some test to tell me 'You're cured! You can now move on with your life!' Am I waiting for some doctor to throw up his hands in the air and say. 'Sorry, Scott. There is nothing left to try.'

Swirling around all this is all the other stuff that life tells us we have to be concerned with. Keeping up with the mortgage, making 'final arrangements', trying SOMEHOW to lessen that burden for my family. Knowing that financially my life has been a failure in this regard... we have no 'nest-egg' to fall back on, no stocks to cash in, on which the family can depend. Hell, I don't even have enough in actuality to dig a hole in my back yard and put me in it when the time comes. I am sorry that this sounds like some pity party, oh-whoa-is-me, but I cannot help it. Dove tailing on all this is the list of 'what-ifs', and 'what I won't be able to do's'. The fatalistic part of me made a 'bucket list' - then the realistic side of me understands that living out a bucket list requires loads of money - money I don't have, so why bother.

In this struggle, I want more and more to have someone, somewhere tell me what my 'expiration-date'. The simple fact that no one can do this is fast becoming my biggest frustration. Now I recognize that there are always a host of reasons that doctors cannot do this. So, I am left reading faces, expressions trying to get some idea of where I am headed.

Well, I will try to end this entry on a bit of an upswing, despite not really feeling that way anyhow.... I am, despite all my bitching and moaning, blessed with people who seem to care so much for me that I just don't feel deserving. I feel that I owe them great things to be done with the time I have left. This is another example of the kind of thing that spins in my head as I sit, at home in my chair trying to put together reasons to do SOMETHING, ANYTHING that might add some meaning to my day to day existence.

This week, the weather has been beautiful and my dear friends Kristen and Kelly came up to help get my studio ready for Fall work. Their energy and support for me, all along this journey along with that of my family friends, clients and customers who seem, to deem, my artwork good enough to purchase. This continued support makes me willing to keep going, to keep creating, to keep fighting and to remember that the effort I make along the way can provide me a way to deal with all this junk and some how keep going...

HOUSE

2012-07-24T18:27:00.002-07:00

PATIENT NOTE : There comes a point in during the struggle with terminal illness when you have had many treatments and dealt with all the questions, side-effects and other issues surrounding the experience, that each time a treatment fails to be effective in either arresting or eliminating the disease that you question whether or not it is all worth it, if indeed, the end point is terminal anyhow. In my case, I want to make it clear that my path has not been as difficult to deal with as others - I have maintained most of my health, and unless you look at my CT scans, you really don't 'see' a cancer patient - an issue which has produced its own set of challenges. If a cancer patient is fortunate (like I am) you don't face the battle alone - I have a wonderful wife, fantastic kids, and a growing network of friends who have all done their part to make the past year and a half manageable. However, keeping a clear head and positive outlook for what is yet to come is not easy.

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If you talk to my family members, you will soon discover that I am a fanatic for the show HOUSE. It is probably true that I have seen all 7 seasons worth of episodes probably 20 times. This happened for several reasons.

First, I like medical stuff, but, I just wish it didn't have to affect ME so much, damn it! In my head I have probably written a dozen episodes where I am a patient of House, and HE figures out what is wrong with me -without the pre-requisite four or five brushes with death that his patients suffer through on the show - they hook me up to the right meds, which make my disease disappear and I roll out the door in a wheel chair with my family... Alas, sigh, that is not the way it has been in the real world.

Second, during my various recoveries at home, and then the following life of unemployment as I go through treatment, I find myself sitting in my favorite chair, absorbed in the world of Princeton Plainsborough Hospital, where MY condition is not the issue, and I can 'help' - vicariously! - make other people better. I guess part of me wants to believe in miracles - than if I keep trying hard enough, if the doctors can keep going to the magical chemo-medical cabinet, whip up another concoction and find one that will finally get rid of the cancer and let me live out a normal life - to grow old and all that.... I keep hoping.

Third, though my doctors are no where near as crass, as a patient, I appreciate 'the-straight-story' - that I think is another reason I enjoy House... To me, he is one of the few characters who says what needs to be said. He is not afraid to tell someone they are an idiot, or a moron, or what ever other 'face-slap-generating-insult' that is necessary to make someone see what is really going on in front of them. If my doctor tells me, "Look, this is really bad." I can deal with that more than some mamby-pamby, 'politically-correct' version of the story that I am facing... Part of this issue that makes the continuation of the struggle is the fact that I realize that at SOMETIME, some doctor will tell me, one of two things either; "The cancer is gone, and we just need to monitor you.", or "Look, there is simply nothing more we can do for you."

Obviously the second option is the one that I fear the most and currently the one that occupies my mental state, making it hard to see the point in the struggle. To date I have had, 7 treatments of Oxaliplatin and Xeloda over 3 months, followed by 6 treatments of Irinotecan and Erbitux over 3 months, followed by my current regimen of 3 treatments of Irinotecan, 5-FU and Avastin over 2 months. Add into that 28 radiation treatments BEFORE all the chemo and at each stage, the treatments have shown no reduction in my tumors.

Twice so far I have been hospitalized due to side-affects that have gave me breathing problems, most recently last week I went into a coughing-spell that made it nearly impossible to breathe and ended up causing capillaries to burst in my lungs causing clots... so now add permanent blood-thinners to the daily pharmacopoeia of drugs I have to take, and you should be able to see why I wonder, at times, "Why the hell do I bother."

Seriously, as I have mentioned before 'ending-it-all' has seemed like a pretty good idea, but every time I find myself standing on that edge, looking into that psychological pit, I get pulled, yanked even, back into the struggle by people who make me realize that no matter when the end-game catches up with me, it is important to so many people that I keep on struggling. That I find some way to keep enough positive things in my head as possible, keep focused on the day-to-day, and try to find a spark within each day to keep on trying.

Without going into the details of my occasional depressive crying-fits, I need to say how important having people around you to help you hold on is. It has been absolutely vital for me. I cannot fathom doing this alone. For me my best friend, my rock, my anchor has been my wife. It may sound corny, but I don't care. Having her to hold me, listen to me blather on about how much my life sucks, and THEN she finds away to always say the right things, or nothing at all, to get me through the toughest times.

I couldn't do it without thinking of my kids either. Despite typical parental gripes they are great boys who continue to live their lives like I am ALWAYS going to be here. That is comforting at times - to know that my illness has not been so outwardly obvious that they are in a state of worry or fear for me all the time. Sometimes, it is frustrating too! When they become the uncooperative growing young men that make me want to taze them into compliance, I have been good at not being one of 'those' people who throw their illness at people to get them to do my bidding.... Not that I haven't thought of it, but that is not how I want to deal with things, nor is it the kind of 'patient' I want to become.

Then there are my friends, so many people have been so helpful and thoughtful that if I live to be 100 years old, I could not thank them enough - and I need to beat this disease, get healthy and be around to show them all in one way or another how much I appreciate all they have done for my family. As I have written before one never realizes how many people you have touched, in one way or another until your back is truly up against the wall.

Despite, seemingly contiuing setbacks with my treatments, I DO believe there WILL be a drug out there that will help either arrest or eliminate the tumors, or at least help me extend my time as long as possible. As I have also said before, I have a lot to live for and a lot yet to do... So I don't plan on going anywhere....

As I tell my doctors every time I go for treatment, "Here I am. What do you have for me today. Bring it on and let's beat this thing."

The Confusion of the 'New Normal'

2012-06-08T09:19:00.000-07:00

PATIENT NOTE: I would like to summarize before I add to this blog. The timeline of the experience gets foggy and needs some review.
OCTOBER 2010 - Hired by Asset Protection Corporation - fairly interesting job.
NOVEMBER 2010 - Recurrent bleeding systems leads me to the hospital for tests.
DECEMBER 2010 - A diagnosis of advanced colon cancer with no lymph node involvement.
MARCH 2011 - Surgery to remove the cancerous sections of the colon ends with complete proctocolectomy, leaving me with a permanent ileostomy. Two week hospital recovery.
MARCH - MAY 2011 - In home recovery. Long, arduous, boring, nervewracking and life changing.
MAY 2011 - Return to work at APC, enjoy a full summer and fall of work, learning the job, seems like a good fit for the future.
JUNE 2011 - Begin post-surgical radiation and first round of chemotherapy to treat for cancer that still may be around.
SEPTEMBER 2011 - surgical follow up and CT scan evaluation in cleveland reveals that the cancer has metastasized to my liver and one lung - surgical options are discussed, as well as a shift to a new second line chemotherapy protocol.
OCTOBER 2011 - laid off from APC - reason given was 'lack of work', but I suspect medical costs for my treatments may have been an issue
OCTOBER - DECEMBER 2011 - Now unemployed, and having been advised to begin applying for permanent disability, continue the second round of chemotherapy.
DECEMBER 2011 - CT scan reveals more tumor development and a surgical biopsy reveals multiple tumors in the liver, that are sampled for genetic testing.
DECEMBER 2011 - genetic testing of tumors shows I would be a 'good match' for a monoclonal antibody drug called erbitux, so I begin that a few weeks after surgical recovery.
JANUARY - APRIL 2012 - continue treatment, continue to be unemployed and unemployable.
APRIL 2012 - New CT scan reveals the past three months of treatment have not been effective, and tumors have grown in size and location. After consultation with doctors a new plan is formulated, new chemotherapy and exploration of clinical trial options. At this point I was given a prognosis of not much more than two years until the tumors cause terminal problems.
JUNE 2012 - Began new protocol of 4 drug cocktail to see if it will be more effective in reducing or halting tumor growth.

So, now you are up to date. I just completed the first of 4 bi-weekly cycles of the new protocol and just hope that this time it works....

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When I consider the past three years, and what I have been through I have begun to better understand what has been happening and have a bit of a grasp of what it all may mean in the big picture. Look, the basics are that none of us are immortal, we will all have an ending, there is no escaping that. I have come to grips with that in general, and have even begun to understand that for me, it may be sooner than I would hope, but that, too is out of my hands, other than doing my best to stay healthy as the medical gurus pump their chemicals into my body and try to help do the battle from within.

Before the return of my cancer, I had to deal with the vacuous hole caused in my life by the loss of a job that i really loved. I wrote considerably about that experience in my unemployment blog, so I won't rehash that here, except to say that the loss of a job has become part of the new normal that I have been discovering as I now move through the experience of cancer, which has added more levels to this new existence.

A month or so ago, I ran out of unemployment, which fortunately dovetailed into disability payments. Let me say that, while this money is welcome and desperately needed for our household budget, it is by no means an adequate income for me to feel like I am a contributing member of our economic situation. Like many of our generation, we don't have deep savings, stocks, bonds, investments, etc. to fall back on, we simply try to get by day to day on our incomes. It is not easy, and is not getting any easier as time goes on.

So what is this 'new-normal'? What is this existence that I live now, and how does it affect me as I move ahead? First, I have pretty much lost most sense of time - as in days of the week. I know that it is a 'weekend day' when my wife is home and gets to sleep in. I USED to know it was a week day when my youngest would get up early and go to school. Now that summer is here things are really confusing.

My wife still gets up and goes to work. both boys are home for the summer (neither gets up early) so I REALLY have very little household indicator as to what fricking day it is. I DO have one clue - each Thursday I must give a weekly blood sample to keep monitoring my progress with treatment, but other than that general daily reckoning has been knocked off kilter.

As strange as it sounds I look FORWARD to cycles of Chemo because their two or three week schedules at least ground me back to the real world calendar a bit. However, I must admit that for me, another challenge is tiredness caused by the chemo treatments sometimes has me sleeping at odd hours, sometimes not at all during the night, then I nap during the day further throwing off my clock.

Now that you have a sense of how this combination of events has thrown every thing off, what has been the result. Honestly, I must admit that it is exhausting even to worry about much anymore. I tend to let things either go un-done around the house - worried that I might not feel up to finishing a big project, or I ignore and avoid important things that need to be attended to because I get depressed and think about the short window of time I may have left, and think 'why bother'. This extends from basic house work, adult responsibilities like making final arrangements, to whether or not it is worth even applying for jobs anymore, and why I bother to even THINK of pursuing a 'new-career' as a working artist - am I CRAZY?

As I mentioned once before, this existence I live is one of tumultuous limbo, where I have very little grasp on much of anything, and often see very little point in even making the efforts needed to get up and face the day. Not ALL days feel like this, but many do, I know it is partially due to depression and am on meds for that, but part of me STILL feels like it is not worth it, the world will go on, it will be a bit messy when my time comes, but people will go on without me.

While this may seem a bit depressing, I don't plan on giving up, but I do find it difficult to deal with this 'New Normal'. I need to find a way to put my self on some kind of schedule that can take all these new parameters and build some kind of structure to my daily existence so that I do not just continue to float, feeling helpless, and worthlessly from day to day, until I become too sick to do anything anyhow - I want to stave that day off obviously as long as possible, but it's just that at this time it seems so pointless to continue trying to redefine myself, yet again, to regain some footing in this new normal that I face.

Of 'BORN ON' and 'EXPIRATION' Dates...

2012-05-11T06:20:00.000-07:00

PATIENT NOTE: It has been a little over a month since my last post (a wonderful one from my wife on her perspective in the patient/support process) and a lot can happen - good and bad - and as MY luck would have it, it has been bad. A few short weeks ago my latest CT scan revealed that not only had the chemotherapy protocol I was on for the last 3 months not REDUCED or eliminated my tumors, they have, unfortunately grown - seemingly happily - and increased in size and number. With this latest news came a grim reminder that, left untreated, my time will be relatively short as a survivor. So, on we go with a new plan for new treatment to hopefully beat this thing.

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As we all know - and become increasingly aware - we have 'BORN ON' dates - birthdays, and eventually we have an 'EXPIRATION DATE' - the day we die which hopefully comes later rather than sooner. However in the world of those with terminal illness, we often time get a projected date handed to us by our doctors based on the success or failure of the many treatments we undergo, I, apparently am no different.

I have recently completed my second round of chemotherapy for now metastatic colon cancer that has travelled to my liver and lung. After treatment was completed, a CT scan was done and it was revealed that this combination of the drugs Erbitux and Iriniotecan were completely ineffective in eliminating or halting the growth of the tumors. All I could think when the doctor gave me the news (my wife was there with me) was, "Shit! Really? All this for nothing?". Instead, I looked at my doctor for answers and said, "O.K., what's next?" It was at this point that he started laying out the full picture of just how bad things were.

I always make the doctor show me the scans and explain exactly what is going on in my body. In this case, it just got worse with each passing sentence. I will summarize, since I don't think I can even type all the details, but here it goes. I have about a 20% increase in the size of my liver tumors - now involving nearly 50% of my liver volume (bad, but manageable evidently). The tumor that WAS small in my lung is now bigger, and (here is the kicker) I now have new 'growths' showing up in my abdomen (where my colon USED to be).

The next words from the doctor were, "If we do no further treatment, and take into consideration the growth rate we see here, you will have about six to eight months before the tumors start affecting other systems in your body, like liver function and blood circulation, if that happens, the decline would be rapid, you'd have maybe a year at best." - go ahead Doc, lay it on me!

I appreciate a doctor who is honest and puts things on the table. He followed this sucker punch with this, "But, we are NOT going to do NOTHING. We are going to fight." What followed was a discussion of other medical options - surgery is out due to the spread of the tumors, but there are a whole host of other chemotherapy treatments -some standardized, some more experimental, that he wanted to investigate as we move ahead to beat this cancer.

As we walked out of the office, I looked at my wife and said, "No way in HELL am I NOT going to last only six months. I simply don't believe it." We drove home, mostly in silence and then spent the next couple of days dealing with the new, disappointing news together and separately. Yes, there were lots of tears, hugs, fear and worry. Too many things go through my mind after being given an EXPIRATION DATE. The big kicker to me is that I don't even FEEL sick!!! Not that I WANT to, but when someone stamps your mental forehead with a SPOILS ON date, it tends to freak you out!

What to do now? Panic? Run screaming like a crazy person? Sell everything and go on a cruise? Well, I DID consider all of those things, but realized that for a host of reasons, none of them were viable options for me and my family, so, what to do? What would anyone in this age do? I hit the internet running.

Fire up GOOGLE, search my condition, search clinical trials, search new and experimental drugs, search alternative therapies and treatments. Type, print, read, read, read. Highlight articles, make a list of questions. Read the studies (and panic a bit) since most everything I found looked like my best hope was 18 months to two years, no matter WHAT treatment I underwent. Better than six months, but DAMN!, not what I was hoping for!

The next fun (?) part of this process is the phone calls that are required to family and friends updating them on the situation, trying to avert THEIR PANIC when ever possible. Trying to assure THEM that I am not going to die tomorrow, nor am I going to sit in my chair and give up. I intend to FIGHT with my last breath. This process was NOT easy, parents panic, we have to figure out what and how to tell the kids that I MAY, in fact NOT be around to see graduations, weddings, grand children and the like, let alone grow old and retire in the Bahamas. To put it bluntly, the past couple of weeks have SUCKED!

In between phone calls and internet searches, I put together a stack of articles and a list of questions for the next meeting with my doctor. I set an appointment and off I went.

This appointment (I now think they purposely give patients time to process things, which was nice) went a bit better - I was more focused on hope than paralyzed by fear, and could talk rationally with the doctors and nurses about a new plan of attack.

So, here is the new deal. I am in line for a near-market-ready drug called Regorfanetib to be obtained from either Columbus, or Cleveland. According to my doctor, this is SUPPOSED to be more effective than anything on the market (HOPE!) and show to have very few side effects (GOOD!) and administered in pill form (YEAH!). As potential back-up plans, we went through the stack of clinical trials I had pulled off the web, evaluated which ones I did and didn't qualify for and now we have a plan that is several levels deep, and staged based on success or failure of each medicine.

One good mental light that has appeared is a group of like-conditioned-patients I have been put in touch with through the national Colon Cancer Alliance. In the last week I have had some very encouraging talks with survivors of my same condition that are at 4, 6 and even 9 years of survival! At this moment these seem like eternities - given what I have been told and discovered.

Armed with this NEW information, I have decided to not start obsessing over a potential sooner-rather-than-later EXPIRATION DATE, and to focus on the new treatment, hope and pray we find some sort of combination that will halt or better yet eliminate the cancer now running around in my body. I will also continue to enjoy my family, friends, art, music, food and everything else I love, one day and one drug at a time...

If I am BREATHING, I am FIGHTING!!!!

GUEST CORRESPONDENT: Another Perspective

2012-04-04T20:00:00.001-07:00

PATIENT NOTE : There is very little that is 'simple' about this process we call battling a disease. If anything my blog should reveal that it is an intense, internal experience that forces the cancer patient into many roles. However, as I have mentioned in a few posts, this experience is NOT undertaken in a vacuum, and has wide reaching effects on those that love us, first and foremost our spouses, children, parents and immediate family members. The post you find here today, is from my wife. The ONE person that, by all the most obvious of measures should have been my rock and confidant through all this, is the one person that I have in many ways hurt and disappointed the most, yet she is still here. I cannot express how important the past few months of healing have meant (I think I can speak for both of us here) to our relationship, and how this renewed effort to not only be husband and wife, but to be best friends, my first confidant, my first shoulder to cry on, my first smiling face to share the good things with, and the one person whose hugs at the beginning and the end of the day (and throughout) make it that much more important that I continue to fight this battle. SO, here without delay (and especially with no EDITING from me, is her story.) Thank you FIRST, and foremost to my Honey, By Best Friend, My Wife!!!
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With all due respect, I, as Scott’s long-suffering wife, would like to put my two cents in at this point. Though I am - by far – the less talkative of the pair of us, it is not really in my nature to allow Scott to hog the spotlight indefinitely. I hope you will not mind if I share some of what I have learned as the spouse of one battling cancer.

So with his permission, I will attempt to tell a little more of the story and what we have learned, from my perspective. Apologies in advance, as I am nowhere near as imaginative as he is, and my text may lack the metaphorical inventiveness that you may be used to, not to mention the vast number of apostrophes he puts out there.

As you might imagine, being Scott’s wife means that I get to experience a lot of…how to put it? I experience a lot of Scott-ness first-hand. And that can be good, bad and in-between, depending on the day or even the hour. However, these past two years have brought out the very best and worst in both of us, and a recent crisis has challenged us to finally come to a point where we must acknowledge exactly what our relationship stands for now and what we want out of whatever future we have left.

Obviously, if you have read this blog at all, you have a good idea of the suffering he has gone through. Re-reading his entries, I am reminded of the courageous battle he fought and continues to fight to this day. I cannot overstate enough how well he has dealt with the very heavy and unfair burdens placed upon him in this life.

However, there is one area where he (and I too) have really let down ourselves and each other, and that is communication. Many of the thoughts he has stated in this blog were unknown to me until the time I read them. Many of his ‘dark nights of the soul’ happened to him without my knowledge and involvement. Many of the coping mechanisms he used to deal with his pain were destructive to him, me, and to our marriage. (As I am sure he will freely admit now, having gone back and looked at everything with what we have discovered about each other recently.)

I can see where our breakdowns began – where he began to assume he knew what I was thinking and acted upon that (oftentimes incorrect) knowledge. Where he expected that I would have read his blog and been privy to the information contained within, while I was expecting him to come to me with his feelings. My actions, good and bad, began to take on meaning for him that may have been far from what I intended.

I don’t exempt myself from blame here – I knew he was angry, that he lashed out at times, and without asking myself if there was anything deeper going on, I retreated into a shell of hurt feelings. My attempts to reach out to him were minimal, and I let my anger and frustration get the better of me at times. I have not always been kind, or good, though you probably haven’t been told about all those times. Scott has very kindly forgiven me for these sins, but I have not really forgiven myself.

The problem, which I should have expressed to him at the outset, was that word. CANCER. If you knew how many times I have heard that word, expressed by some beloved family member who would eventually go on to die of that disease, you would know why it freezes me cold in terror and denial.

My mother, who managed to successfully fight off breast cancer, succumbed to Non-Hodgkin’s lymphoma nearly 5 years ago. This was, until recently, the most emotionally devastating event of my life. She was, to me, far too young at 63 to lose her life, and at 40, I was too young to live my life without her. I still miss her terribly and feel a great gaping hole in my life where she used to be.

There are other relatives I have lost: My stepmother, my aunt, my grandfather, my grandmother. The last one I mentioned was my mother’s mother, who died of a brain tumor when I was 8. I prayed and prayed for her recovery; when she died anyway I never prayed for anything ever again.

At any rate, I have known grief, great grief, and it is not an experience I care to repeat. So when I heard Scott’s diagnosis, my thoughts could be expressed in one word: NO. No, he does not have cancer again. No, it is not bad. No, he will not die. No, it is treatable. No, he will be fine. No, NO, NOOO!

And that was that. I shut down emotionally at the thought of surgery, chemo, radiation, scans and most of all, the unthinkable: what if treatment does not work? It was beyond me to imagine what that would be like.

Unfortunately, as a result of this, I began to seem, to the outside observer, rather cold-hearted, I suppose. I buried myself in the minutiae of life – work, chores, kids, and left him to fend for himself emotionally. Which was a mistake, and it led to more mistakes on both of our parts, and even to one that nearly killed our marriage.

Now, just as many things are beyond Scott’s control, many things are beyond mine. I have a job where, for many reasons, I work as much as I am needed, even on holidays, weekends, vacations. I don’t like it, but I do it unquestioningly. To me, it is necessary if I want to remain employed.

This feeling became even stronger in me as Scott suffered his employment challenges. I have a good job, insurance and a reliable weekly payday. I really, really do not want to jeopardize that. So, I don’t rock the boat at work, don’t blow assignments off no matter how tired I am, and end up working a lot of hours above and beyond the usual 40. It makes me physically and emotionally unavailable a lot of the time.

I also didn’t or wouldn’t try to control my adversity to conflict. I can bicker as well as Scott, and scream and shout as well, but I don’t like to. It is upsetting to me (and my digestive system) in a very real and painful sense. So when Scott, understandably, I suppose, began to show a lot more anger than normal, I took as much as I could before retreating into a cocoon of books, music, TV- anything to take my mind off our fights or our other problems.

I sensed the kids were dealing with more than they could take of our fights, so I felt it was better that I absented myself from the conflict at these times than forcing them to endure more of the same. I tried to spend time with them separately to compensate.

Now, I did eventually tell Scott about these feelings, but he wasn’t in a place to hear it, I guess. So breaks down communication. He started reading something totally unintended into my actions regarding all of the above and it had some extremely negative results.

One thing that goes along with grief, for me at least, is guilt. Not that vaguely shameful feeling you get when you forget to send a birthday card to your nephew, but a really terrible, crushing fury at yourself because you failed a loved one somehow, and now that they are dead, there is no way on earth to make up for that. I felt that way with my mother. I decided that I failed her in her last few months alive. I missed my last Mothers’ Day with her because I was too tired to visit her. I must have been in such denial because it never once occurred to me –consciously, anyway - that it could be her last. I called her that day, and she was all alone and in agony from the pain she was going through. Had I been there, I could have helped, but I selfishly excused myself. When she was dying, I managed to get a few days off to spend with her, but on her last day, not knowing, I left her to go back to Toledo to take care of a few things (at work, of course) and that night, she died. As she was passing, she saw three of her four children in the room with her. I was in another state, waiting for the terrible phone call, knowing how terribly I had miscalculated by leaving that day. Again, denial was in play: I thought I had more time to take care of my things, that she would wait for me. What arrogance.

I have since come to terms with that, thanks to therapy, but it still haunts me. But for some reason, I allowed myself to put up the same blinders when it came to Scott’s condition. I could let him deal with his problems – he didn’t seem to want to share them with me anyway – and then he would get better and things could go back to normal.

Time has proven that this was a pretty stupid approach, not that I rationally planned for our relationship to go that way. But the bridge between us started to crumble on both sides and neither one of us bothered to make any attempt to rebuild.

If this entry has any point at all, it is to stress that open and honest communication is vital, especially in times like these. It should be part of any life, any relationship, of course, but when the waters turn rough and the ship seems likely to run aground or off course, that is the worst possible times for the metaphorical crew to decide on separate courses of action to right the vessel and get back on course.

I suppose I have more than one point, and it is for those who might be the principals in the fight against a disease like cancer: Don’t try to fight alone.

Whether you are suffering from mundane stresses and problems or extreme duress and distress, please remember the people in your life need to know how you are feeling every day. One of the most damaging things to our relationship was assumption. He would assume he knew exactly how I felt. I thought the same about him. But we could not have been more wrong about each other.

While we have taken steps to fix these vast information gaps, it is a daily struggle to share both good and bad feelings. Though at one point it came naturally, now it is an effort to express those inner thoughts. Those muscles have atrophied, and must be worked out every day to strengthen them. It is our hope that one day the muscle memory will return and it will be as natural as it ever was.

The hardest thing to express, or even acknowledge, is fear. He is, quite naturally, terrified of the worst possible outcome. So am I. So much so that it quite literally stops me in my tracks sometimes. I struggle mightily to put it out of my head when I must concentrate on work or be with the kids, but it is always there for me as well as him. Not acknowledging that to ourselves and together did not make it go away, it only intensified the loneliness we both felt.

One thing that you will notice in Scott’s blog is that he writes in the first person, mostly, giving you the Scott’s-eye view of his struggles and suffering. This is quite natural and I wouldn’t expect any tale to be told differently. However, one thing Scott has done though, is to live inside his own head a bit too much. No man is an island, they say, and no one battling cancer, at least no one who lives with his or her family, suffers entirely alone.

While Scott must bear the brunt of the pain and unpleasantness of the treatment and surgery, the terror and fears of the future, his sons and I have suffered nearly at much, if at one remove. I say this not to garner sympathy for myself, though as I am sure other people in our situation will verify, when one person in the family battles cancer, that seems to become the only thing outsiders care about any more. The only question I seem to be asked these days is ‘How’s Scott?’ And that’s okay. It IS a big deal. I am glad people care about him and am happy to inform them as to his progress. But sometimes, the selfish part of me wonders if anyone cares at all how I am, how the boys are. Now that is a bit of feeling sorry for myself, so don’t feel like you have to ask me constantly how I am doing. But I have known other people in my shoes and they experienced the same feelings.

I do wish, however, and so does Scott now, that HE had inquired a bit more into my mental state. And I wish that I had not waited for him to ask. Because he did not know how I was affected, he assumed I was not affected. I assumed he only cared about himself, not us. And that caused so many problems for us.

Cancer is a community disaster. A shared catastrophe. (I am sure this is true of all major illnesses.) It can’t just affect one person. Scott will agree that he kept far too many things to himself during the last year or so, not realizing the web between us, between our families and even our friends, meant that at no time was he suffering totally alone. I wish I could go back a year or two and amend some of the mistakes I made, and we made, so that we had not let the massive wall of misunderstanding come between us. I hope anyone reading this or who might know us could learn from the mistakes we made.

Recently, we have begun anew, trying to fix all the gaping holes in our communication. I found, and he did, that while alone, we shared a great many of the same fears and problems, though we never bothered to share them with each other. Finally discussing those fears – acknowledging the hulking specters lurking half-hidden in the room – revealed just how much common ground we shared. It is a shame that it took arriving at a crisis point to prompt this openness.

These conversations have proved extremely helpful to me, and to him, I hope. Discussing the Big Bad does not make that most frightening thing go away, but I do believe very strongly that those terrors we both face are lessened when we battle them as a team. It is not easy, but has been so rewarding.

I hope not to sound arrogant – it may be that we are the most clueless souls on the planet and this lesson is very obvious to everyone but us. However, if there is anyone in your life that you could stand to be more open with, to express more to, don’t wait until you, like us, reach a crisis point and nearly break your bond apart. Go ahead and say what you are feeling – as honestly and politely as you can. You may open up some wonderful, albeit painful, avenues of expression and end up with a better relationship than you had before.

Thanks once again to Scott, for allowing me to type all over his blog. Also, I would like to thank his readers, friends and supporters. You mean as much to me as you do to him, and I am very grateful for your presence in his life and ours.

Cheryl Lightfoot

Sleepless Nights and Poetry

2012-04-01T08:51:00.000-07:00

PATIENT NOTE : So, what keeps patients up at night? How is it that many of us can never seem to get to sleep without the need for the little white pills? Oh, hell, I don't know... Probably has something to do with all the stuff that we face as we deal with. Everything from positive to negative emotions. Worries, concerns, joys and failures. Many times I, at least, don't feel that what I deal with is any more than what people who aren't stricken with a disease, so I sometimes feel that my droning on about my condition is some how redundant. I am sure that I am not the only cancer patient with sleepless nights... sometimes stress or worry induced, sometimes side-effect reduced, either way it's a real pain when you can't seem to not off until the clock strikes three, so what do we do? As mentioned, the little pills help - I avoid them if possible because I take about 20 pills already in the course of a day and don't want to add any more stuff to the mix. Besides, the pills dull my senses and really seem to do little good to push away the issues anyway, they are still there when I finally wake up.

What I HAVE been noticing though is that these hours of silent wakefulness in the dark seem to have my heade filled with ideas; ideas for paintings, ideas for projects, ideas of how to help other people, ideas for blog posts (!), and I have taken to keeping the proverbial notebook, pen and flashlight (so as not to wake my wonderful wife!) next to my bed so that I can scratch them down in the night, before I fall asleep (when ever that happens), so that I don't lose them.

So, here, instead of a long metaphorical story, are a series of Haikus... Why the hell Haikus kept popping into my head last night, your guess is as good as mine. Since I was too tired to titel them, they are just numbered instead, in the order that they came to me....

Pen on table waits

Nightmind cannot shut down

The words must come out

Bags hang from above

Tubing brings expected death

To invasive cells

A word that scares all

Yields love from all directions

My heart leaps with joy

Attackers have strange names

Defenders equally so

We all hope for cure

Night is when fear comes

Roll over for loving touch

She is always there

Drip drip the drugs

All I can do is sit here

Watching the birds fly

Inside my body

The Battle goes on each day

A battle unseen

Sometimes darkness rules

I cannot shake the sadness

Can you hold my hand?

Count down or count up

You will really never know

I smell coffee brew

#10

Good days too I have

Wife smiles, kids smile too

Their love keep me here

#11

Chemo drips down slow

Test results are never fast

The results are in

#12

Chemo kills bad cells

Healthy ones fall victim too

My fingers suffer

#13

When hope seems to fail

I turn to a pleasing place

Cook up some fine food

#14

When it comes my time

What will people remember

I hope 'a good man'

#15

When I need rest

My dogs and cats know it too

Cuddle for a nap

#16

Senses are intense

An aroma triggers thought

Perfume, Bacon, Paint

#17

Sometimes on canvas

I can let my feelings flow

Joy, Pain, throw brushstrokes

#18

I wake before all

I walk the house, listening

The sleepers calm me

Whew, wow. Got all that out of my head last night. It feels good to get it out here.

Of Anniversaries and Mileposts....

2012-03-06T06:51:00.001-08:00

PATIENT NOTE: In the world of life-threatening illness of any kind, the passage of time is really, really strange for the patient. Some days drag on seemingly for ever, while sometimes weeks seem to pass by in an instant. On the other hand, waiting rooms, operating recovery rooms, bed rest and the like seem to put us in a world where seconds seem hardly to tick by at all - for us - but we watch the world around us zoom by like a whirl wind. So too, goes my writing. In many ways this blog has been wonderfully cathartic on one hand, and on the other it has seemed like an overwhelming responsibility - to KEEP writing, to KEEP sharing as if there is a duty attached to it - sometimes it became a chore, so it gets ignored. I think maybe a better way to look at it is, as a patient - even one as blabber-mouthed as me - gets tired of talking about 'it' and thinking about 'it' so, I just let it go, after all if it becomes a chore, then the enjoyment I usually get goes away. So, for those of you who are readers, if I go 'silent' for a time, please take the above into consideration. But for now, I feel the need to write.

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DATELINE : Toledo, Ohio March 6th, 2012 - It has been a smidge over a year since my first surgery. The one, originally designed to remove my colon cancer and set me back on my merry way. If you have followed my writing in this blog, you will know that the surgery got more complicated and instead of a temporary colonic 'set-back' I ended up with a permanent ileostomy. To review, for those who may be new to the game, here is the Reader's Digest version: They removed my entire colon, tried unsuccessfully to save my, uhh... poop chute and associated parts, leaving me with a new orifice on my belly and forcing me to catch my stuff in a bag for the rest of my life.

The key word here being LIFE. I want to take this moment to thank, sincerely my entire Surgical team at the Cleveland Clinic - Dr. David Dietz and staff for their excellent work. Their efforts have given me 'Pedro' (named by Malcolm, my son, you will have to look back at the older posts for that story!), who, despite what I have read from others with this same condition, has been very, very problem free, as artificially created orifices go. Knocking on everything wooden (for luck), I have adapted fairly well to this 'life changing' event and in the bigger picture of everything I have been dealing with the process of getting used to caring for a stoma has been the easiest thing of all.

As is the case, I guess, living with anything long enough will eventually become routine, and that is pretty much the case for me. Thankfully, I empty when necessary, change my appliance a couple times a week, and have returned to a fairly 'normal' life, as it is. And, for those who don't know my history, when I am out in the 'world' no one knows the difference between the 'old' me and the 'new' me. So, a successful (more or less) procedure to remove the cancer and return me to 'normalcy' has brought me to today. Along the way, though, things were not always so cheery.

Again, summarizing, the period of recovery at home was long and somewhat arduous and often boring. I was happy to return to work late last spring, and enjoyed very much my job in the Security System Industry. The summer brought chemotherapy to treat for cancer that may have been left behind - microscopic - from the surgery, and again, I had the good grace to have an employer who worked with my needs for time off during treatment.

Summer moved towards fall, and I was hit with two more challenges. First, I was laid off due to the economy from my Security job, which was hard enough to take, and then shortly after it was discovered during medical scans that my cancer had indeed metastasized to my liver and lung - meaning more surgery, and more treatment.

This time around things got really ugly for me, mentally, psychologically and even spiritually. I began to see (from my view point) everything slipping away; no job, cancer is back, kids growing and moving on, and even, I thought, my marriage had little value anymore, since, again from my point of view, there was little chance of being around much longer anyhow. And, since I try to be as honest as possible with my writing, I contemplated suicide several times during the late fall and winter. Everything seemed hopeless. I even tried to 'put my game face on' by diving back into art work, all the while hiding how I really felt, and not doing a very good job of expressing my feelings about what I needed from others.

I want to take a moment here to say, though, that all along - despite MY messed up vision - I was surrounded by family and friends that loved, cared and hoped for me. I don't know where or when exactly but at some point I had an epiphany and realized that if not for myself, I owed it to all the people around me to fight, struggle and get on with my life. I realized that, as simplistic as it sounds, that none of us - with cancer or without - knows how much time we have left, and for me to wallow around in continual self-pity and anguish about my condition, I needed to get up and do what needs to be done to keep going, to be around for as long as I can. And, again, I could not have done this without ALL the people who have shown such care and concern along the way.

So, bring on January 2012... A complicated month of pain, anguish, tears, desperation, rediscovery, joy and renewed happiness and hope - again back to my original notes on the 'time-warp' - this past couple of months have seemed to last forever, as I moved moved back into touch with the really important things in LIFE.

First, LIFE itself. It is never easy no matter what the circumstance, but the fact that I am still here is so unbelievably amazing, that sometimes I don't feel worthy.

Second, MY WIFE - the one person who has been through everything with me along the way, the one person, that no matter how hard I pushed away at times, never, ever, really let go. Rediscovering the depth of our commitment and how after over a quarter of a century we still love each other through it all is again, simply mind boggling.

Third, MY FAMILY AND FRIENDS - I will say again (you are probably bored of this now, but, hey, this IS my blog anyhow!) your support has given me the will to keep going and every one of you at one time or another, in one way or another have given me something to hold on to and to keep the desire to stay strong and get better alive.

Fourth, MY LOVE OF ART - since my illness has pretty much stripped me of the chance of returning to 'regular' employment at least for a while, I have had a lot of time to rediscover, rejuvenate and grow as an artist. I am sure that I will not become the next Picasso, Pollock, or VanGoh, but I am certain I can make art and make a living at it. Developing this avenue of both creative energy and potential for income has become my new focus, challenging, yes, but worth it none the less because I really do love what I am able to do.

Continuing on is the challenge. February has brought another round of medical adventure, as I began treatment for the cancer that has spread from my colon to liver. There is good news on the treatment front, as I am sure I have mentioned before, genetic testing of the cancer showed it to be a good match for a new treatment protocol and medicine called 'Erbitux' that will, in combination with another drug called Irinotecan be very effective at eliminating this batch of tumors.

As of this past Friday, I have been through three of eight treatment cycles, and besides expected (and welcomed by the Doctors at least) side effects, have been tolerating them well. I get tired a lot, but my lab work shows things are 'normal', and we will just have to wait to see what the scans later in the spring tell us as to the effectiveness of the treatment. In the mean time, I will LIVE.

Though I still have some days that are flecked with moments of depression and fear, most are good. My focus on my family and my art work has rejuvenated my spirits as has keeping in contact with my friends and planning for all the events and activities that the burgeoning spring and summer months holds for all of us as the year goes on.

So, to finish up for the morning; Anniversaries and Mileposts... The last year has not been 'un-interesting' and I do not wish to have another one like it in most respects, but for whatever reasons beyond my comprehension I am allowed to continue on, I hope to have many, many more and to keep adding wonderful things to my life and to continue to appreciate all the life, love and happiness that I am surrounded with on a daily basis. Despite all that I have been through the past couple years, I would like to think that I am becoming a better person, better husband, father and friend along the way.

Here's to, oh, I don't know another 50 or 60 years or so of living the life I love and loving the life I live....

"You are NEXT!" - Facing another Opponent

2012-02-28T11:37:00.000-08:00

PATIENT NOTE : "When will this all be over?", "How will I know if the treatment is working?", "What do I do in the mean time?" These are but a few of the thousand questions that patients face - particularly those of us 'fortunate' enough to have dealt with a cancer battle more than once. Being a survivor is harder that it looks - especially when many of us (thanks in great part to better treatment) don't LOOK like we are SUFFERING from cancer. For me, besides weight loss in post-surgical recovery (not a recommenced weight loss plan by the way!) I don't look sick. I still have my hair, I am not running to the bathroom to barf my guts out. I don't collapse in public from exhaustion (at home is another thing though) I don't have the skeletal-pasty look that we see in so many movies. NOW however, I feel 'included' in the suffering. The current treatment I am on is called Erbitux - and it's main side affect is acne!!! Wee!! Yeah!!! Like being a teenager all over again. But, here in lies the interesting quirk of many cancer therapies, the 'expression of acne' as the doctors call it is a GOOD thing (???). Evidently this tells the doctors that the treatment is working - how the hell they determine that, I have yet to discover - it will require more internet searching on my part. The real challenge is that every so often on this treatment journey (mine is coming up on a full year, if you include my first surgery) is that we patients who are lucky enough to NOT be plagued by debilitating side effects slide back into our regular routines of family, work, friends, socializing and the like - with only minor punctuations of therapy and doctor visits. This is the danger - letting down the guard. It can be dangerous.
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Being a martial arts fan, I watch a lot of movies. True, not many are 'Oscar Worthy' but most have good messages if you watch them. One of my favorites is 'Blood Sport' - starring Jean-Claude Van Damme playing the fighter Frank Dux. Watching this movie with cancer in mind, it says a lot to me. Relax, and go with me... O.K....

Fighting cancer or fighting an opponent in a ring are very similar. I have used the Rocky metaphor before in my blog, but this 'fight-story' is a bit different, a bit more specific to what those of us who fight cancer on multiple fronts, or fight cancers that have morphed, moved, or changed just when we think we have them beat.

In the movie, my hero, Frank Dux is in a tournament - a secret tournament - much like my experience as a cancer patient. While in the movie most of Hong Kong 'knows' about the tournament, no one but the fighters, their seconds and those betting on the event actually know where it is, how it works - or that occasionally some of the fights end up in death.

For cancer patients it is the same. Yes, sure, we all know people who have had cancer - some have lived some have died. The public sees the parades, the various colored ribbons, the fundraisers, but what they do NOT see is the 'preparation' involved in getting ready to step into the ring and swap punches, kicks and gouges with the 'enemy'. Sorry, but unless you are in the arena, smell the sweat, taste the blood, breathe hard in your corner, and keep coming back you just don't get it.

Now, for those of us who have been 'fortunate' enough to deal with cancer more than once, our lives become like that of Frank Dux in the movie. Each time he steps into the ring, he faces a different opponent - this is my favorite part of the movie - Frank is forced to adapt to each style of fighter, forced to instantaneously recognize the approach, the techniques attacks and defenses he must adapt to in order to make it out of that fight.

Dealing with multiple cancers is JUST like that. For me, the first time around (20 years ago) the battle was fairly simple - warm up, get in the ring, exchange a few punches and kicks, take a few shots to the groin, but in the end I landed a knock out blow, and in effect went into 'retirement' I felt like a champion. I had won the battle.

However, or But, or wait a minute - there always seems to be some caveat to these stories. After having forgotten about the battle - I had been busy living, working, raising kids and all the other stuff required of life that I got lazy and all of a sudden I found my self, facing a new opponent, this one - like the character of Chong Li in the movie, a mountainous, steroid hyped mountain of a fighter, glaring at me from the ring, pointing his finger at me, proudly announcing that "You....are....next!!!" after watching him kill another fighter who he had at his mercy. You could see the 'fear' in Van Damme in his role of Dux, and had you been in the room with me when the doctor brought the second diagnosis to me, you would have seen the same expression on my face, I am sure.

This second time around, was much worse than the first. It required major surgery, long and painful. Recovery at home, long and painful, fraught with challenges - physical, mental, psychological. It was months before I was healed up and ready to face the new challenger in the ring.

If my live were the movie, this is where the 'montage' would be - in case you didn't realize there MUST be a montage of 'training-footage', accompanied by a kitchy-song which illustrates how the fighter gets prepared for his upcoming battle, and 'Blood Sport' is no different. The Dux montage follows him from childhood through adult-hood mastering all the teachings along the way, gaining the skills he will have to draw upon to do-battle with his opponents.

For me, the training montage would not be near as dramatic. Instead of pumping weights, sparring, catching fish with my bare hands and otherwise turning my body into a perfect physical specimen for fighting, I spent my time drinking protein shakes, eating healthy, sleeping alot, wandering around my house looking for things to do... watching television, reading about my condition on the internet... Not exactly movie-material, but it was how I got ready.

Like the character of Dux, I took on my new opponent with the help of Oxaliplatin, Xeloda and Radiation Therapy. The real challenge in 'filming' this battle is that were it a real movie, the screen would be blank...because the battle goes on internally, microscopically where no one can see the actual fight... and THAT is the challenge.

This part of the battle is much like the scenes where Dux is blindfolded by his master and forced to fight without the advantage of seeing where or how the next attack will come from - the same goes for the cancer patient. All I can do is sit in my treatment chair and take my next dose 'blind-folded' hoping that it works. The big difference for me is that so much of this most recent battle HAS been conducted behind the blindfold - I cannot SEE what works and what doesn't. All I can do is keep swinging and kicking, hoping to hit the target.

Back to the movie, the tension builds as one by one Dux defeats his opponent, leading (of course) to the big show down between he and Chong Li, and that is where I am now. Preparing for the next battle. Along the way, Dux watches his friend Jackson take on Chong Li. During Jackson's fight he thinks he has K.O'd the bigger, favored champion and runs around the ring celebrating, unbeknownst to him Chong Li (like cancer) gets back up and attacks Jackson again from behind, nearly killing him.

Dux watches his friend nearly die, and like all good friends, vows revenge. In my case, I have had to watch several family memberes be defeated by cancer, and understand the pain of Dux and the desire to win the battle for myself.

So, here I am again, thinking I am done fighting, the score card is snapped into place like in the movie: "Scott Lightfoot" vs. "Metastatic Colon Cancer". I step into the ring face off my against my own Chong Li and start trading punches.

Unlike the movie, where you can predict the obvious end, mine is not so certain. I am only a couple rounds into the fight. I FEEL like I am winning, but as before the interanl blind-folds are in full effect. I take my treatments, continue to do my 'montage-training-regimine' and we will see what we see.

The thing that really gives me hope is that in my 'treatment-corner' I not only have modern medicine, great doctors, a good team of treatment staff and the like. I am blessed with a wonderful wife - always there encouraging me to fight to not give up, to take care of my self. I also have my boys in my corner who want to see me win, and my cadre of friends and other relatives watching from their own 'support-television' sets as I continue to lay punches and kicks on my opponent....

Walls, Doors & The Journey Forward

2012-02-13T07:36:00.000-08:00

PATIENT NOTE : Over the past year, I have spent an inordinate amount of time, as a patient, as one whose world has been turned upside down by this cancer experience - multiple experiences - reflecting most often on the negative aspects of this process. Yes, it is awful. Yes, it is painful. Yes, it is paralyzing. However, I have discovered that dealing with nothing but the negative - without including those closest to me is often even more damaging. It is SO vital that patients know just how important TALKING is. I am not referring to the medical chit-chat between patient and doctor, or patient and treatment nurse, etc. but rather to open hearted conversations with those who STILL love us - despite what we as patients think. Living in 'our' bubble, trying to reduce the pain and suffering of our 'people' just doesn't work. THEY need us to know that our struggle is also theirs, and that they can only help if we ASK, and TELL them our fears and HOPE. This post will focus on looking forward. While scary, yes, and uncertain, there is still much I hope to do, live and experience along the way.

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WALLS : I want to start by first apologizing to MY people for building walls from inside my self and shutting them out on so many levels. Despite what I have written in the past, I have NOT always dealt with this process in the most healthy of ways. Fear, depression, unhappiness and selfishness can lead to so many stupid decisions that a wall gets built that has no doors... none to let me 'out', or to let others 'in'. My wall has often be 'decorated' with things that make it seem like I am doing fine, handling things well on my own, being strong and not needing help along the way -- nothing could be further from the truth. I NEED MY PEOPLE!! Starting at home, with my wife - who I have not given enough credit to along the way - for ALWAYS being there for me. Holding my hand, sharing tears of fear, sitting for hours at my hospital bedside. Always there. Then there is our oldest son. A wonderful, mature young man who, is an amazing listener and makes me proud every day. And, our youngest son, who despite all the faults I see in myself, he sees nothing but 'the best Dad in the world' - a title I don't often feel deserving of, but that is how he sees me, and I love him for it. Lastly, in our home are the 'non-human' family. The dogs and cats. Creatures that have nothing but love for their 'people' despite all the turmoil going on around them. Outside of my home, I am so fortunate to have a network of family and friends that are, again, in my opinion - way more supportive and caring than I fell deserving of. I cannot count the times when a kind word, text, Facebook post, gift in the mail or chat has kept me from giving up. Thank you everyone.

DOORS: Recently, I have been reminded that walls are o.k. on some levels... There are things I don't HAVE to share with everyone, but without doors, I cannot LIVE. I can exist, but that is not the same thing. Without doors to let me 'out' of myself and let others 'in' I am doomed to simply wait for the end. I am convinced more than ever, that I want that end to be a long, long time from now, and in order to do that, I need to get healthy - medically as well as emotionally, and I can do NEITHER without those who I love and care for and those that love and care for me. I simply have to say "Here I am. I need you."

So, what things, given all else, do I look forward to as I keep on living. Amazingly, most of them are simple, common everyday things that we so often overlook. The list cold be impossibly long, so I will try to keep them to a 'Top 10' -- keeping in mind no particular order, and that there are many others. Here we go.

Scott's Top Ten List:
1) Snuggling with my wife.
2) A fresh blanket of snow and a sunny morning.
3) The sound and smell of a fresh pot of coffee brewing.
4) Conversations with Cameron about his career.
5) Watching and laughing at really bad sci-fi movies with Malcolm.
6) Georgia stealing pencils from my art box, and chasing peanuts around my studio.
7) Cooking amazing yummy things for my family and friends.
8) Working on my house and growing things in my yard.
9) Creating art to really loud music in my studio.
10) Being able to be a good listener and a good friend to my best buds.

THE JOURNEY FORWARD : I also look forward to many more years of putting together art shows with Everett, sharing our local artists work with the world. I really look forward to seeing my own work get better and get to the point where I can make a living creating things that make people smile.

I can't wait to see what my kids, my nieces and nephews and all my 'adopted-artistic-kids' do. I look forward to gallery openings, concerts, stage shows and being the proud parent in the audience, proud of all they do.

I look forward to graduations, college visits, apartment moves (as kids grow and move on). I look forward to weddings, and yes, even to adding the title of 'Grand' in front of 'Father' at some point. I look forward to introducing grandkids to art, music, cooking and being happy.

I look forward to sharing my experience with new artists, young and old, when ever I get the chance.

I look forward to discovering new art, new music, new friends.

I look forward to the journey - the ups and the downs - knowing that I will have my people with me.

FINAL THOUGHT FOR THE MORNING: Walls protect us from the storms of life. Doors that open both ways let in friends and let us out to live in the world. But living only begins when you take someone's hand and walk down the path - together.

The Destructive Stew : Toss In Cancer, Fear & Depression

2012-01-31T07:37:00.000-08:00

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!"

2012-01-24T11:44:00.000-08:00

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)

2012-01-12T17:19:00.000-08:00

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......

"Are You Ready For Some FOOTBALL!!!!"

2011-12-30T13:14:00.000-08:00

PATIENT NOTE: Once again I find my-self in a post-surgical, pre-therapy period, and stuck in a chair (at home much sooner than expetetd this time (more on tahat later). I've done this before....surguries, bipsies, waiting, healing is never much of a schedule change, it does how ever allow the mind to wander as I try to figure out how to approach the next phase of treatment. My condition had changed, according to one doctor for the worse, according to another just to more a more challenging effort. So how do I wrap my head around this news? As I settled in to watch a college bowl game it hit me -- a game plan, what I needed was a solid game plan, full of offesnive tricks, defensive strenth and special teams performance to coaching brilliance, kind of like MOST Steelers games and on RARE Occasions a Purdue game.
When most people wath a football game - even those that have PLAYED football, they really don't have a clue about what goes on in the pre-game preparation reqired before ball kicied off thee tee...Facing another treatment battle, I begain to consider my situation. I am a few weeks away from the play-offs and here is what I am faced with as a coach. My team has made it through a rough season, starting way back in March, when my whole team got hit wit a bad case of 'disase poisonin'. This devistated my team and delayed the start of spring training by several month.s

Whe spring finally broke the team Doctors had most of the key players taking snaps and learning the new play book. For the 'chemo-patient-team' these instructions come from the chemicals that make up the 'coachingstaff' who's job is to put the team together so that when the players hit the field, they are ready for the battle.

In the biophysical world of game-prep, during the off-season the team owners (doctors) and scouts (researchers) always have their eys out for new and exciting players and coaches who can keep all the players on the field.

Now as a 'fan' (family and friends) of the 'team' (patient) what you DON'T see is all the worry... Despite the full stadium of supportive fans who send their care from all over the country, the bright shiny-objectivity in the 'game-face' of the coachiung staff, nor the fear-based sweat on the brow of the coach (patient) - which looks like the glimmer of 'confidence'...

Despite what you may hear or see from some of the 'media-outlets' that try to let the fans know the ''status" of the team, the ACTUAL state of the team is a carefully crafted statement released with juuuuuust enough information to get the point across to the people who are 'betting' on how the season is going. In the real world of football we FANS know that there is not a single coach that spills all it's teams. None of them say for 'certain' about which stats will 'start' which ones may 'play' and which ones will be on the bench.

In my world as cancer patient / coach. I constantly run this same batttle... Depeding on the closness of the 'circle' of friends, depends on which 'report' I give. While, like great coaches, I donot lie, I don't always do s full reveal of the injuyry report.

What I also don't fully reveal is the depth and scope of my play book... Will I rush more or pass more on offense (will I run in a hurry to the fastsest treatment approach, or will I take a 5 step drop and look for a longer, wide open sure handed cure). Defensively, will I BLITZ or play ZONE (will I throw catuion to the wind and try the newest most advanced treatment, or will I play it more conservative and try the more 'vanilla' or simple treatments for my illness. Finally, some one asks about Special Teams... A last resort, yet vital part of any good game plan. I take a deep breath and look around my family and friend 'press-room' and say that I HOPE that we win the game out right, and all or special teams have to do is kick extra points, but if we need the help have sweet kicker for long field goals, and a punter that can pin the opponent deep inside there territory giving us a great chance at victory....

By the way...Even through the narcotic haze I noticed that my Purdue Boilermakers beat Western Michigan!!!!!

"Beyond Here, Be Dragons"

2011-12-20T09:05:00.000-08:00

NOTE: Being patient with a life-threatening illness changes you. Period. You are never the same person coming out of your experience as you are going ing. From the most basic issues - removal of tumors or body parts, or whatever bodily issues you face, to the toll that your illness take on your closest family and friends. Sometimes those 'outside' the experiential bubble, it is hard to realize that the overall experience has so many effects on the patient from depression, pain and suffering to psychological issues that have short and long term effects on everyone around them. It is easy, relatively speaking, for the outsiders to say all the right things - those oh-too-familiar, and yes, important, words of support, while forgetting that for the patient focused on the sometimes moment to moment survival, they may sound like a babble to be swatted away, and this reaction may offend those with even the best of intentions, and I am speaking for all of us here, we are sorry for that.
Likewise, this experience forces the patient into a near constant state of mental flux with feet landing in the real world, the world of the dismal future, the world of the hopeful future, and the world of the immediate present we are trying to drink in as we move forward to whatever comes. This condition can also be damaging - we as patients sometimes forget who and what is important, and even necessary in our real-time physical lives - family relationships, friendships, economic needs of the household, plans for all the 'what-ifs' our conditions force us and our families into - and this can make us do crazy, strange, stupid and even dangerous things. I don't have to remind you of the myriad of movies that illustrate this stuff, but just wanted to put it out there, that for the most part, our off-putting behavior should be somewhat expected as 'we' try to process everything going on, and also realize that 'we' are trying our hardest to make 'your' experience with us as challenge free as possible as we march on to what ever is to come. Please forgive us our weaknesses, and hold our hands for strength. Many times that is all that is necessary.

I am a fan of maps, cartography, and the sense of the unknown and adventure faced by early sailors embarking on ocean voyages in the 'flat-earth' era. My perusal of these maps, l find many maps made by captains from this time that 'run-out-of-space'. Not because of lack of paper or parchment size, but because of two things; both of which play into my life as a cancer patient. Reading captains logs from this time reveals that they would often place the now famous warnings, "Beyond here, be dragons (or monsters)" The two primary reasons for this are; the unknown - no on had GONE past the sketched limits, or to hide 'secrets' - that they did not want others finding should the maps end up in the wrong hands.

I understand this, as a cancer patient, and also understand those around me who have difficulty 'reading' the maps I am drawing in this life as a patient. As I journey forward, for me there seem to be more of the unknown to deal with, than there are secrets to hide. If you haven't noticed from my previous blog posts, dealing with life as a cancer patient is complicated. Each day I wake up can yield a host of things that I have never faced before, and like the old mariners, many of them, by no virtue of my own choice, I have to deal with on my own... No one can control the 'mutiny' going on in my body. No one can control other ships creeping in to take pot shots at me, or to attempt to siddle up to me in the fog and take control of my ship, wresting what ever I have built from me.

In so many ways, I am adrift, I have a map (treatment plan) that is being used to guide my journey, but to where? What lies beyond the edge of the map? Is it a certain death in the clutches of some unforeseen beast? Is it an island of peace, serenity, and relaxation, filled with naked women and the finest rum and spices? I simply do not know, but yet like those sailors addicted to the sea, I continue to sail, forward, ever forward, pushing the edges of the map. So far, I still have the drive to see what lies 'over-the-edge', be it good or bad.

The previous is how I see my experience through treatment. Some days are smooth sunny sailing with light winds, and the future looks bright (these days I tend to get lazy and forget that I am still actually being treated for something trying to kill me!) and much like a Captain who may turn the wheel over to a first officer so he can nap in the sun, I end up suddenly jolted back into reality by some new issue - a side-effect I had not experienced before, or a test that show up something new or unexpected - and I have to jump to the call try to get my vessel back on course - again to where? Only forward.

For my friends and family who, by virtue my being 'gone' on my 'journey', I cannot see how my 'absence' makes their lives the more difficult. For mariners it is usually a lover, or wife, or children left on shore, as the story goes, looking longingly at the flat, mysterious horizon, for the 'return' of their 'captain' from the 'voyage'. O.K. enough with the quote marks, you get the point. In my role as the Captain of this adventure, I have had to use the map I have given - sometimes a crude, knock-off of the one given to me by my doctors - to try to explain where I am headed, what I expect to find and most importantly - when or even IF I will return to port, dock the ship, poke holes in the sides and stay ashore with them. I have to look at them and shake my head, glance unknowingly as they do at the map, and say, "I just don't know. All I know is that I have to go... I have to try... I have to move forward, for all of us."

For them, the other meaning of, "Beyond Here Be Dragons", is something that I cannot control. They see me venturing off onto the sea of treatment, and wonder what I am doing when I am 'gone'. Do I have secrets I don't, won't, or can't reveal to them about my voyage? What kind of 'life' do I lead on the trip? Do I think of them? Do I wonder about what THEY are doing while I am out, 'galavanting the globe' dealing with a journey they cannot really understand? They have fears, and concerns just like the families left on shore by the captains.... "Does my Captain have another wife? A mistress? A family, a life in another port? Does he continue to voyage on with the hope of coming home to US or to journey on to THEM?" They look at the map and wonder these things as they look with hope for the mast returning on the horizon. They are as unsure about my return to their shores as I am about the fate of this, my latest voyage.

Back to my current voyage...

For the past several months, I have been cruising my ship, The H.M.S. 'Hope' on kind of auto-pilot. I have been napping, un-awares as mentioned above and mean while, slowly beneath the water line of my consciousness, visible only by CAT scan, the sea-worms of my cancer have begun boring holes into my liver, and lung. I had thought that the last battle when I had sunk the vessel Colon-Cancer, that I was victorious, heading on to the tropical paradise for a quick resupply, and then turning windward, had been heading home to port... The desire to unpack my sea-trunk, stay home, grow a long beard and write about my adventures becoming stronger all the time...

Then, one clear sunny day one of my mid-shipmen comes running into my cabin, and informs me that the boat is leaking, the worms have eaten through the hull, and the crew is being forced to bail. As a patient, this is the hardest part, my crew on board and my family at home, look to ME for answers. As if by some magic possessed only by Captains in these situations, I can tell them that it will all be o.k. We will make it to port and not sink somewhere out here in the uncharted waters 'beyond the edge' to which I have sailed.

Here is where captains get creative, and here is where the captains luck either holds out, or falters...

I consider the situation - the worms eating my metaphorical ship - being my liver and lung - need excising. The ship needs repaired, I hope I have what I need (chemo) in my store room. I consider telling them the truth, putting them to work, diligently, not knowing for sure myself if we will make it through. Then I think of the other option. The 'rum' in the store room. Should I admit to myself, that being beyond the edge of the map, there really is no land in sight, I have no clue where I am heading, the stars at night are all unfamiliar now and cannot guide me, and that no matter how hard we fight, we are destined to sink, into the mire, to the bottom of the sea? This being so, should I break open the casks, get out the instruments, unfurl the sails and party on to the distance until we re all too drunk to realize we are doomed?

I stand there, on the silent bridge that is my life, I listen to the creaking boards below me, the snapping of the lines and sails in the uncertain winds now breaking across the bow. I look at my 'crew' and see the look of concern and hope that 'I' have the answers and I make the decision. "Alright, my surly knaves, we push on. Carpenters, get the toxins from the storeroom, get to killing the worms, get rid of the rotting wood. The rest of you, grab the buckets, and get to bailing. Strip what wood you need from top-side, repair the hull. Unfurl the sails, turn her into the wind and let's make for port. Cook! Fire up the galley, keep the food coming, keep the boys fed, and by all means keep my pot full of fresh coffee. We have some rough sailing ahead, but push on and we shall make it home."

I finish my evidently inspiring speech, return to the cabin of my mind. As I listen to the men at work outside the door, I wonder if my words are as hollow as an empty keg, or if we will indeed, again, be successful in our journey and return home again.

In less than a week, I embark from shore, this time in the face of a storm rising, a departure into the dark, with the hope of a new sunrises of calmer seas, and safe sailing, yet again into the journey of treatment and recover.

"Beyond Here, Be Dragons." - but my ship the H.M.S. is battle worn, fully stocked for the adventure and ready to sail again. Out and back, that is the plan...

"And the Oscar goes to......"

2011-12-14T13:45:00.000-08:00

NOTE: As I have mentioned before, cancer is not like any other disease. It's nature is crafty, it's nature is deceptive, it's nature is subversive, and as such 'once-a-cancer-patient-always-a-cancer-patient' is about as accurate a description as is possible for those of us hit with this disease. Without boring you with all the statistics, it is a well known fact that the majority of patients who 'beat' cancer once, will eventually be killed by some other form of cancer - or cancer related complication - at some time in the future. Sadly, there is pretty much no getting around this fact. Hell, we are all mortal anyhow, why we think that every one on the planet should be able to live to 100 is beyond me anyhow. Now, I am not rushing the end, by any means, but it seems to me our concentration on extending life to the last possible breath - while disregarding quality of life along the way - is not only costly economically, but draining emotionally and psychologically to those around us (patients) as they wait around for us to 'finally' kick.

So, how do 'we' do it? How do we, faced with some form of poor diagnosis, go on, day after day, knowing that our 'some-day' is probably closer than we think, and how do we live our lives in such a way that we don' create an atmosphere of pity that drags down our friends and family as we 'do our best', 'figh the good fight', 'keep on trucking', 'keep our chins up' etc, etc, yadda, yadda, yadda.

We do it by acting. With a son in college studying the 'Theartre Arts', I often times am tempted to call him and say, "Hey, you want to do a 'character-study' or 'research a role'... come on home and I will put you in touch with some of the best actors in the world (I humbly put myself in this category!)... Patients with terminal illnesses (whether terminal means next month, next year or 10 years from now) should all get awards, Oscars, I tell ya, for their ability of mask and unmask feelings, emotions, concerns, happiness, sadness, joy, confusion, hope, fear and other emotions that we as a group go through on a minute by minute, day by day basis.

I am sure there is a psychological term for it somewhere out there - this masking process - that people use to either express or hide what is really going on. I also remember a photography project that one of my professors did years ago in college where he created self-portraits of himself with various expressions and the displayed them in a huge grid... I might just try something like that as a visual parallel to this blog post.

In the Theatre world, where the changing of masks is relatively easy - unless the mask is adhered to the actors actual face - the actor goes off stage, puts one down, grabs the next, reappears on stage, alters his demeanor to fit the mask and away he goes... and if he does a good enough job the audience enjoys the show and he is applauded for his efforts...

In the world of the cancer patient, things ain't quite so easy. We display many faces which may or may not reveal what is going on inside the 'actor'. We start with the mask of 'symptoms', move on to the mask of the 'diagnosis', then on to the mask of the 'informer'. Take a deep breath, maintaining and controlling the emotions that go with these masks is very difficult.

Next come the masks of 'treatment', 'surgery', 'recovery', 'more treatment' and then 'relief', when treatment is done. These are the EASY ones! All along the way, there are other important masks we must wear those of support and optomisim; included in this group are the masks for spouses, our kids, relatives, co-workers, friends and the general public. As if this was not tough enough we must HIDE all the negative masks, they must be kept in a trunk, locked away in our own personal mental-prop-rooms.

Unlike a Shakespearean tragedy, we as patients are not allowed to bring out the ones no one wants to see... Believe me they are in there... as well crafted as the positive ones we are expected to display. Masks of fear, doubt, sadness, insecurity, death, pain, unhappiness, concern, self-pity, worry, loneliness, loss, sickness, anger etc. No, THESE masks are the ones that must remain hidden. For me I wear them at home when no one else is around - or awake - late at night, early in the morning, in the first few hours of the day when people have left for work and school. When the house is quiet, and I am faced with only my thoughts, my fears, and my masks... Sometimes I wander around aimlessly, touching things, reading things moving things around, anything that might trigger a 'mask-change' to something more positive. It doesn't always work.

I get asked all the time - because people can read 'something' in my face - some mask or other - "What's wrong?" or "What's the matter?" ---- and in that instance, I have to decide which mask to grab, the fake one that hides what is really going on, or the real one that reveals the truth? This is the dilemma that make me think that somewhere down the line, someone owes us an Oscar for day to day acting performances by those trying just to hang on to survive one more day, while not bringing down the audience with too much 'reality'.

The Amazing Nature of 'Bubbles'

2011-12-03T06:50:00.000-08:00

NOTE: Recently discovered 'areas of concern' in my Liver and Lung, has once again given me 'pondering time' as I, once again, begin the process of traveling between doctors offices, and sitting in waiting rooms. Inspirational metaphors come at the strangest times and places and this one is no different.

I'm 8 years old, and remember, sitting on the warm concrete of our front step on a fine spring day, when the temperature, breeze and humidity combine - just so - to make a memory moment that creates one of those special pathways in your grey matter. As I sit there, my Dad reaches over my shoulder and hands me a brand new, bright green bottle of 'Bubbles'. Kids these days would scoff and probably be offended by such a simple gift, designed, really to entertain kids so that parents can go off and do what ever it is that parents do (wink-wink, nudge, nudge) on such a fine day and the kids are outside with new bubbles.

Todays kids don't understand how cool it is to crack open that new bottle. The little cardboard circle either sticks to the bottle cap (considered 'unlucky') or sticks to the bottle (considered 'lucky'). Luck determined, the next thing you do is sliiiiiide your finger down into the slippery goop and find that little plastic stick with a loop on each end.

This moment of catch-and-retrieval must be what surgeons feel when they operate on a patient and discover that the tumor they see and feel at that moment, does indeed match the grey-scaled-image they saw on the CAT scan in preparation for the tumor removal process.

Back to to the bubbles. The next key to the enjoyment of bubble making is the caaaaaaarful removal of the bubble-stick - one smaller end designed for holding with the hand, the other larger for holding the bubble goop... (that is always what I called it anyhow!) in such a way that the bigger of the ends came out of the bottle properly 'loaded' with bubble juice!

Now is when things start to get tricky. If the sunlight is right, I look as the shimmering, swirling colors revealed on the thin film of bubble juice wondering how they form, what they are made of, how the colors got there in that clear special liquid.

From a medical perspective, I imagine the same 'kinds' of questions puzzle doctors and lab techs as well. "How did that tumor GET there?", "What is it MADE of.", "What can we do to PREVENT more of them?"

Bubble juice ready. Having loaded the bubble stick it is now time to release the wonder of the bubble on the world. Talk to any young child (and even some college professors) there are a myriad of 'proper' ways to make the 'proper' bubble. For me, I was the patient one, trying to make the biggest, hugest bubble I could... My brothers and sisters how ever were 'twirlers' spinning around or waving with their wands producing hundreds of bubbles to my few. But that was cool, they were happy, I was happy.

While they were off in the sunlight of the front yard, barefeet in the freshly cut grass, spinning like bubble derivshes, I sat there on the porch with bottle of bubble juice in one hand and loaded bubble stick in the other. I took a deep breath.....and blew....

A side note on bubble blowing to those who have never done it... Getting the proper force with which to make a big bubble is abit tricky, by the time you have perfected it you will notice that your convers all star high tops have been doused with soapy water...but if you have mastered it you could blow bubbles that get bigger and bigger with each try.

I think I have made a bubble or two that approached 3 feet in diameter, but here is the catch... Have you ever tried to MEASURE a bubble? I challenge you! Go get a bottle and try! The nature of bubbles is that they are 'wobbly'! As kids we don't understand the physics behind why. As we get older we understand a little bit about gas pressure, and air temperature that affect the bubble world.

Now we are getting to the meat of the post... I suggest you go refill your coffee cup and come back refreshed and ready to continue.

Waiting...waiting...

O.K. You're back. Here we go. I talked a a bit about the relationship between doctors and bubbles, but this blog is about me as a patient, so that is the part of the story we will build upon.

There are several parts of the Bubble world that you should be able to discern at this point. The overall experience is contained in the mysteries of the bubble juice. Me - the patent - am the stick. The fates - genetics, medicines, body systems, treatments, etc. these are the kid blowing the bubbles. Finally, there is the atmosphere - the would in which the bubble lives its life.

If you take time to study bubbles you will discover several truths about them.
AXIOM #1 : Bubbles are fragile. They do not last forever, no matter what we do, or how much we want them too.
AXIOM#2 : No two Bubbles are the same. And trying to figure out how long they will last is a waste of time.
AXIOM#3: In the right situation, bubbles attract other bubbles, they combine and make bigger, more wonderful bubbles.
AXIOM#4: Bubbles will 'pop' fail, disappear, often suddenly, without warning. Laughter usually ensues and you go running back to the supply bottle for more.

For he above axioms and the story below...substitute BREATH IN THE BUBBLE with Cancer Patient.
And friends, family and medical staff are the BUBBLE itself

The fates, pick up the stick and blow... encasing the breath/essence into a bubble of a certain size... While the BUBBLE has no control over its' size or shape or even it's destination, it can rise, rise, rise, until it disappears beyond some horizon - the kid in us hoping that it will last for ever...drifting on a sunny day.

If the BUBBLE is lucky it is strong enough to combine with other bubbles in the area. A fascinating process - not understood by the bubble blower, but the resulting bubble get bigger stronger as it grows.

Another question that gets asked if the bubble blowers is, "What is the bubble made of?"

For me as the patient, I see the actual 'film' of the bubble as all the people who bind together to encase the breath of life that was put into the bubble in the first place. The molecule-people who comprise the bubble are all that keep the bubble together at times. THEY know if they fail the BREATH inside, the struggle will be difficult.

Any 8 year old bubble master KNOWS you can catch bubbles on the stick, but you cannot get things to ride ON the outside of the bubble (not even cotton wood tufts, or dandelion seeds!) and it is nearly impossible to get anything INSIDE the bubble to stay without breaking the bubble - certainly not like the kitten in the bubbles in the Dairy Queen commercials - Duhhh! The 8 year old knows that whilde carrying the bubble around on your stick is fun it is much more fun to release the bubble and watch it go.

This now brings us to one of those times when you turn to your Mom or Dad and ask that all important question...."Where does my breath go when the bubble pops?" This is a darn good question - as it pertains to both the physics of the bubble and the mysteries of the universe....

So, not want to get it wrong or to come up with some completely unbelievable bull crap that the kids will see through, the parent sits for a moment, watching the bubbles fly and the kids spin.

He or she answers, "Well, hmm...When the bubble breaks that is the bubbles way of setting your breath free back into the universe, to be used by some other kid, somewhere learning how to blow bubbles."

Knowing that he or she has only answered only half the question, Mom or Dad takes a drink of soda and thinks before continuing.....

"Ah....that's good." the parent says.

"What? The BUBBLE...what happens to the BUBBLE!" the bubble-explorationist demands.

Looking down at the soapy legs of the child, the pool of bubble goop on the porch, the parent continues..."Well, the BUBBLE knows there comes time when the breath needs to out and return to the world, so they 'let-go' the bubble people are really small now and go looking for new bubble friends to catch and help out new breaths that need a ride so they can be happy."

The parent waits for a response to the on-the-spot creation of 'bubble life'. The child scoops up the bottle, jumps up and off the porch... "Thanks! I get it! The bigger the bubble the happier the breath and the further it can fly!!!"

"Get busy LIVING or get busy DYING."

2011-11-29T13:42:00.000-08:00

O.K., I will admit it here... "Hi, my name is Scott and I am a 'Movie-Re-Run-Addict'...", PHEW, there, it's out there... I can move on... I can talk about my addiction and how it puts phrases, or quotes in my head that run over and over again, like one of those annoying song-lyrics that affect most people.
Those who know me well enough can probably make a list of the 'Top Ten Movies That Scott Will Be Bound To Be Caught Watching', sorry, that is my addiction.
I this particular entry, it is that memorable scene from The Shawshank Redemption, and the quote comes from 'Red', played by Morgan Freeman - "Either get busy LIVING or get busy DYING."
For those of us who have been in the fight against cancer, in particular, we get to a point after all the tests, surgeries, recovery, treatments, side-effects and healing that we suddenly find our selves at one of life's many crossroads.

That reminds me of the final scene of Castaway (see the list mentioned above!) where Tom Hanks, in the roll of 'Chuck Noland', finds himself in his Jeep, alone, again - after suffering alone on his island for 3 years - and faced, yet again with a simple choice, the unknown to the left, or the unknown to the right, all he knows is he has to move on to somewhere.

It's like that with cancer. As a patient, all I hope for is that I will get to the end of my battle and be lucky enough to be HAVE choices, of where to go or what to do - that is the reward for my struggle and suffering, the simple ability to go on, move on to another day, to do. Simply to do. What or where I do whatever it is, really doesn't matter. And then we get there. I had recently reached that point where the choice is to be made - and on any levels it is almost as scary as the post-diagnosis - pre-treatment period (see previous posts).
In the past year or so, I had healed, been through treatment and gotten healthy enough to return to work and to move on with my life. Confident that I had once again made it through another struggling time, and that maybe, just maybe, I would find myself ON life's train instead of strapped to the tracks in front of it.

I was moving along, almost forgetting that ever important statement, 'once a cancer patient always a cancer patient'. Time passes, the cancer and it's implications, and it's pain, fade, fade, fade...until I got to the point where I was back into the 'normal' patterns of life - dealing with work, home, bills, kids, a spouse, schedules, events, plans for the future - the comfortable part, then, out of nowhere, like a sucker punch in a bar that I knew was coming, but didn't want to admit, <WHAM!!!!> I get laid off from my job (see my OTHER BLOG - www.shockinglyunemployed.blogspot.com for this ongoing story).

Zip forward on the disc of life and you get to today, November, 30th, 2011 and I get the news that my CAT scan from yesterday reveals a growing tumor in my lung, and three in my liver. FUCK!!!

As I sat in my chair flipping through the movie channels, trying to process this new event, I run across another of my favorite movies, 'Rocky Balboa' (the last of the Rocky Movies - so far) "But it ain't about how hard ya hit. It's about how hard you can get it and keep moving forward. How much you can take and keep moving forward." Yeah, Rocky. Easy for YOU to say.

But, as I sit in my moping chair, I realize that, in my head, I am right back where I was about a year ago. Knocked down, punched, breathing hard, bleeding, looking up at the Cancer beast -chuckling in a neutral corner, waiting, just waiting for me to give in. That is when I here them all at once; Red, Chuck, Rocky and finally Micky yelling at me, "Get up! You son-of-a-bitch! I didn't hear no bell!!" So, I do. I get up out of my chair and make a couple phone calls to people who have always been in my corner, letting them know once again, that I am in the fight, and with hard work on my end, and their support -as always - I have decide to GET BUSY LIVING....

So, here we go again......

Sidetracked by Side Affects

2011-10-08T11:39:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Mystery And Beauty Of Jigsaw Puzzles...

2011-09-10T09:19:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2011-08-23T07:25:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2011-08-16T18:33:00.000-07:00

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

Bumps in the road, yeah, right.

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

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

Simple recovery, yeah, right.

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

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

The Beast lives inside, lurking, waiting.

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

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

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

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

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

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

Too Much Time To Think

2011-07-07T07:15:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"I Want A New Drug..."

2011-06-24T16:08:00.000-07:00

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!!!