Sunday, December 9, 2012

The Story's End




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.

Saturday, November 17, 2012

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.

Friday, October 26, 2012

Why Bother...

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...


Tuesday, July 24, 2012

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."

Friday, June 8, 2012

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.

Friday, May 11, 2012

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!!!!

Wednesday, April 4, 2012

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