Stephanie's ABC's of cancer, A-G

When Stephanie suggested that I do my own ABCs of cancer, , she started her own list and has now asked me to post them here as well.  I have to admit, I fought against using 'A is for Anger' for the longest time because I knew I was going to post these one by one.  Steph's words echo so many of my thoughts which is what I guess you would expect of a couple that has been together for 28 years...  So, here you go, A-G from Stephanie:

A – Anger – I struggled with this one. I didn’t want to start this out on such a negative note. I skipped “A” and worked on some other letters, but I always came back to anger when I thought about “A”. Yes, I know how futile anger is and I know it is a little self-destructive and very irrational. But, I admit it -- I get angry and I am ashamed (another “A”) that sometimes I lash out in my anger. If you have happened to be on the receiving end of that, I apologize (the “A”s runneth over!).  It is not all consuming and it is not always present, but I have to work at it and be conscious of not letting the anger take over and the bitterness overwhelm. I have recently told that anger is caused by fear and hurt. Am I afraid? (another “A”) Hell yes I am afraid. I am afraid that I am not going to be strong enough, that I am going to fail Ron or the kids. I am afraid that Ron is going to suffer. I am afraid of living a life without Ron, he is such a huge part of who I am and how do I go on living without that? Am I hurt? Hell yeah. Nothing hurts as much as watching Ron go through this and not being able to make it better. It hurts to watch him hurt. I am hurt that we have missed a lot of things because we were gone to NOLA. I hurt when my kids are hurt. I am hurt that our future is being taken away. I AM afraid and I AM hurt and yes, that does make me angry.

B – Bridges – After Ron’s epic marathon of surgeries in May/June of 2012, I bombarded Dr. Boudreaux with questions and what ifs. He very calmly told me that we had to concentrate on today and today’s crisis or concern and we will cross whatever bridge we have to in the future. Unfortunately, this was a message he had to repeat to me on several occasions because I proved to be a slow learner. I am just now starting to learn the concept. During that time of epic surgeries and recoveries, I would never have imagined that we would be concerned with end-stage kidney failure. There are so many things that could happen, I CAN’T worry about them all and as much as I would LIKE to plan for all contingencies, I can’t. So I am learning to cross the bridges as they present themselves to me and to Ron.

C – CANCER – this is the big one. The obvious one. The crushing one. It is the pink elephant that is always in the room. Hell, it is the entire zoo in the room. Cancer is ALWAYS there; like another member of our family. The obnoxious, overbearing, all-consuming cousin that comes and won’t leave and disrupts your entire life and family.  I have tried my hardest to give our family some normality (which isn’t easy in our family!). I know how Ron tries to be the normal guy and not “Cancer Man” (that’s our creation that he and I joke about – how we cope with people giving him the look and/or how I get the “so how is Ron?” question – both always accompanied with the little head tilt and the look of pity in the eyes). I am proud to say that I could count on one hand the number of times we have had to play the “cancer card” (probably all by me). That is not to say I have not been tempted or that I may not in the future – but for right now --- normality is the goal for daily life.

D – Dignity -- this is representative of my upmost respect for Ron. He struggles with maintaining even the smallest amount of dignity. If we women who have gone through childbirth thought the whole process wiped away our dignity, we can’t even hold the candle to what Ron has had to endure. I know Ron and I know how he feels. I often witness his own perceived humiliation – now understand I don’t agree with those feelings or the stuff that concerns him, none of it fazes me or most of the people around us – but that isn’t what is important. It is what Ron thinks. Now knowing how personal a lot of his issues are; he still speaks very openly with us all. I joke about his blogs or comments being clinical or analytical --- but a lot of what he shares is very personal and yet he doesn’t shy away from any of it. Kudos to you Ron for showing us how to fight cancer and how you share with your support team with such great dignity and honor.  Some of the other “D” words that came to mind were demolishing, demoralizing and dread. I dread that moment when I get the phrase “there is nothing else we can do” and then the subsequent phone calls I am going to have to make. I think demolishing and demoralizing speak for themselves.

E – Energy – Ron and I both seem to suffer with a major lack of energy or focus. Ron’s has a lot to do with physical issues. Mine, not so sure. Some days I will be lucky to get anything accomplished. Thank goodness for lists, without them I wouldn’t nothing would be getting done.

F – Family – what can I say about this. This topic has caught me off guard and has caused me to become very emotional. (oh don’t worry – I am sure that it is going to happen several more times during the development of this list) I imagine you all know how important our kids are to us. It destroys Ron, probably more than anything in this process, that his cancer causes such chaos and will ultimately cause our children such pain. I am so grateful that my kids have had the opportunity to know Ron. I wasn’t so sure when he first got diagnosed – Riley was 4, River 3 and Forrest was 6 months old, that they were going to get that chance. I could not do this without the three of them; but, I worry about them so.

G – Gratitude – this is so huge. I can’t comprehend how long so many people have been on this journey with us and how many people have helped us along the way. We are so fortunate to have such great support. Little things, big things.  There is soooo much. Thank you. Thank you all. That phrase doesn’t seem to hold enough meaning for gratitude felt. I wish I could show how much I feel – I can only keep saying “thank you”. Thank you.

G is for Goals

Of course, given it is world cup time, that should probably be:

GOOOOOOOOOOAAAAAAAAAALLLL!!!!!

How do you have goals with a terminal disease?  The same way you have goals with the fact that you are going to die sometime, just with a shorter time line.  12.5 years ago, I thought I had a roughly 50/50 chance of making it to 10 and I set my goals appropriately.

I wanted my kids to know me and know what is important to me.  Riley was just 4, River was 3, and Forrest was 6 months.  Permanent memories begin to form around the age of 4 and that meant that I had to at least live 4 years for Forrest to know me.  I wanted him to know me as someone who did not stop just because I had been dealt a bitter pill.

People get dealt bitter pills all the time.  Rejection from someone you care for deeply;  Rejection from job applications;  Rejection at sports; Lack of recognition at work.  All of these things have happened to me and they hurt.  I wanted my kids to see someone who rose up in spite of hardship, who rises up in spite of getting knocked down.

I had a goal of seeing my kids into high school and have achieved that for all but Forrest.  He is just a year off and I don't have much worry about seeing him there and will cheer for him loudly when he competes in his first high school soccer game.  I have seen my daughter come out as a beautiful young woman and blow away everyone in her math class as well as to start swimming competitively this year.  My oldest, Riley, is going to be a Senior.  A SENIOR!  I will see him graduate in a year and head off to college to start training for his career in engineering.  I have seen him perform well in soccer, making varsity his first year and I will get to see him lead the varsity team this next year.

I have met my goals of seeing my wife reach levels that I never imagined.  I got to see her complete the Pikes Peak Ascent and earn a medal.  I saw her after completing her first marathon and the rode with her on her first metric century.  I have gotten to hike, kayak (once, don't like the water), ski, see her waterski for the first time and so much more.  My goals of seeing her grow into the person that she wants to be.

I have made my goal of trying out for ski patrol, missing the cutoff by 1.6 points at Winter Park (don't think I will ever be in that good of shape again).  I have completed the triple bypass which I will NEVER do again.  I have excelled at work and been able to perform at the level I want.  I have skied almost 40 days in a year and only have three more ski resorts remaining to ski in Colorado to bag them all.

What do I do now?  What do you do for goals at this point?  I don't think I have 10 years left in me.  My disease is advancing and we have used almost everything in the bag of tricks for my cancer.  Even if I were to wake up tomorrow with no cancer, my deteriorating kidneys do not bode well for a long life.

5 years?  I think that is possible.  I think my chances of another 5 years are probably in the 50/50 range now.  I don't have anything immediately wrong that can kill me but there are a large number of risks in my future.

• My every 6 month ureter swap could throw me into carcinoid crisis and I could die on the OR table.  Low probability here as we have a routine that seems to avoid invoking crisis
• Dialysis will be starting sometime, within the next 6 months to a year I imagine.  That carries a low risk of blood infections and other issues that could cause death at some point but they are also low probability
• Abdominal obstruction is always at the front of my mind.  I am 1.5 years out from the last laparotomy so that frees me from the concern of the surgery causing another obstruction but the tumors will continue to grow and there is a moderate probability of it forcing a laparotomy with all the risks of crisis along with major surgery
• My liver seems to be doing OK for now but those tumors also are growing and we may need to deal with them at some point through another procedure which carries some risk.
• The unknown.  I never expected to lose my kidneys and the unknown factor scares me.

So, what are my goals?

• I want to see all my kids graduate from high school.  Yes, that is right at 5 years but my goal is to see Forrest walk down the aisle, diploma in hand.
• I want to recover some of my strength and weight.  I am almost scarily skinny right now,  6'3", weighing in at 170 pounds and much of that weight might be fluid retention from my ailing kidneys.
• I want to be able to walk up 5 flights of stairs again without having to stop half way to rest.
• I want to walk the quarter mile into and from work every day without wishing I waited and took the bus.
• I want to ride again.  My legs are weak and there is no way I could do the academy loop at all, let alone in the 40 minutes it used to take me.  I want to ride the loop in under an hour without having to stop.
• I want to climb a 14er.  I have been to the top of two and rode my bike to the top of one but I have never hiked to the top of any.
• I want to ski outhouse without stopping again
• I want to have a shutout again.  They are rare as hen's teeth for me but I want another one. Achieved, 8/11/2014
• I want new adventures with my wife.  I want to see things we have never seen and go places we have only dreamed of.

Do I have other goals?  Maybe but these are the ones I see right now.  5 years seems like a long time but just achieving these will be some significant accomplishments for me.

F is for Fight

Cancer patients are expected to be warriors, fighters, tearing into their disease like Beowulf ripping the arms off of Grendel.  You see this in the books about how one should fight their disease and anecdotal stories of how a positive attitude will extend their life (hint, it doesn't).  I feel like Charlie Brown, trying to kick that football one more time but only every couple of months...

I don't fight my cancer.  I tolerate it.  Most of the time, we have an uneasy truce where I ignore it and it leaves me alone.  Most of the time this works.  I am not one of those people who spends time concentrating on chemo and focusing on the radiation attacking the tumors.

That doesn't mean that I pretend the disease doesn't exist and avoid treating it.  I do explore new treatments.  I do take the medicines that have a possibility of working and I do follow the progress of my disease.  I take the steps that are necessary and look for potentials in an analytic fashion but I never think of myself as fighting the disease.

I am proud of what I have been able to achieve in spite of my disease but I struggle with the image of being a fighter.  I have had it easy.  My cancer has been slow growing and I have not had the debilitating side affects that many other types of cancer get.

Please be respectful of those who are struggling with their disease.  Don't tell them that they just need to fight it because that puts the fault of their failure to survive on them rather than something that is beyond their control.  Support them in their struggle.  Sit with them and listen.  Don't say things that imply they are simply not working hard enough.  Be respectful of what treatments they choose because they know what they can tolerate and what they can handle.

E is for Enlightenment

There is something about terminal diseases or near death health experiences that give you a special view into yourself and how you approach your life.   This is true of people who, like me, have carcinoid cancer that will eventually take their lives and it is true of people who have heart attacks, other types of cancer and are either cured or not cured.

These experiences do a funny thing to your attitudes.  You start to prioritize things differently.  You start to think more about what the long (and short) term consequences are for the decisions you make today.  I was always one that was willing to take a day off of work when sufficient snow fell but I also frequently worked like a madman, putting in multiple 80 hour weeks to achieve a deadline.

Work was fun and rewarding but I missed things.  I went on a business trip once over my daughter's birthday.  Yeah, I know she will have many, many more but I missed one for work and the trip wasn't even that important.  I still love many aspects of my job and am blessed with quite a bit of latitude in the projects that I work on and get to work on so many cool things but work is no longer a priority.

20 years from now, no one is going to recall whether or not I worked a particular day.  Even when I am at my best, receiving accolades and kudos for my performance at work, no one will remember that 5 years from now.  On the other hand, being a coach for my son's or daughter's soccer team will be remembered for all their lives.  Taking a day off to play hooky with my son on a bluebird powder day at Copper Mountain?  That is something that will make a difference.

This disease has blessed me with the ability to see what is really important and to focus on those things.  Work, though highly rewarding and satisfying, is no longer a priority.  Family, friends, and memories are what I want.  That is where I want to spend my time.  Coaching and encouraging my wife through her first metric century was one of my proudest accomplishments of 2013.  21 ski days with my family and friends in the 2013-2014 season was outstanding.  Watching my youngest son come within inches of a hat-trick, seeing my daughter excel academically and begin to compete as a swimmer, and watching my oldest son manage the defensive line on his premier team are all things I value now.

Family, friends, and memories.  That is what I want for my legacy.  That is what I want people to remember about me.  That is what will last long after I have become worm food.

You don't need to wait for your near death experience or life changing event to see what is really important.  Love those around you and let them know how important they are to you.  Show them where they rank by spending your most valuable asset on them:  Your time.

D is for Depression

No matter how strong a person is, depression will set in at some point in time.  The first 10 years of my disease, I was able to avoid any sort of significant depression.  Other than the occasional major surgery, the monthly shots, carcinoid syndrome, diarrhea, and other symptoms, I lived a pretty normal life.  I knew I had cancer and that it had a good chance of getting me at some point but this did not affect my day to day living and depression never really entered into my life.

This changed in 2012 when I hit a major bowel obstruction and went on TPN for a couple of months prior to the first of two surgeries, one of which was several days.  I had procedures to address stents in my biliary duct and had two major carcinoid crisis that put me within inches of death.  I lost 50 pounds, looked like death warmed over and still haven't been able to return to a more normal weight.  The colostomy from my second major surgery has played hell with my body image although I am starting to get used to it two years later.

The tumors impinged on my ureters and that has caused my kidneys to begin to fail.  Their slow decline will be leading to my going on dialysis in the near future and this is yet another hit on body image and on my general life and outlook.

All of these things have led to occasional bouts of depression that  have lasted for mere hours to as long as a week.  Sometimes, I just get overwhelmed with everything that has happened to me and everything that I know is going to happen.  I get overwhelmed by the thoughts of things I will miss out on because the cancer is going to eventually get me.  I get overwhelmed by the pressure to be strong and to keep a smiling face.

I hear from so many that they are proud of the way I have handled the disease and how strong I am in the face of the future but sometimes I just need to be weak.  For those times, I am extremely thankful for my wife who lets me lean on her when I am weak, who lets me cry as she holds me and comforts me when the thoughts get to be too much, who I know will always be there for me.  Being strong is an outward face that most everyone else sees and Stephanie helps me stay strong by giving me a safe place to be weak..

This disease will kill me and of that I have no doubt.  I am many years past the point of a medicine finding a miracle cure and have to learn to incorporate that knowledge in my life.  Depression will come again.  Depression will come close to overwhelming me and my thoughts again.  Depression is just another of the battles that I face in my dealing with this disease.

Of course, I am not the only one that gets depressed.  Stephanie has a hard time thinking of the things I will miss, the things I can't do, and how all our vacations seem to be to New Orleans for my treatment.  My kids never admit to it but I am sure that they have the same bouts of depression that I have but their bouts are on a different level.

Nor is depression unique to me and my disease.  I am sure all with chronic or to be fatal diseases have the same issues that I do.  Know that they are struggling the same way that I am with the public face of strength and their private battles with what is inevitable.  Life goes on whether or not we want it to and the fact of or lack of a disease is nothing that affects the ticking of the clock.  Be willing to be there for your friends.  Know that they have struggles with happiness and be willing to stand there for them when they do lose control of that public persona.