HOUSE

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'

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...

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

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

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.... 

#1

Pen on table waits

Nightmind cannot shut down

The words must come out

#2

Bags hang from above

Tubing brings expected death

To invasive cells

#3

A word that scares all

Yields love from all directions

My heart leaps with joy

#4

Attackers have strange names

Defenders equally so

We all hope for cure

#5

Night is when fear comes

Roll over for loving touch

She is always there

#6

Drip drip the drugs

All I can do is sit here

Watching the birds fly

#7

Inside my body

The Battle goes on each day

A battle unseen

#8

Sometimes darkness rules

I cannot shake the sadness

Can you hold my hand?

#9

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....

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

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....