M is for Mole and Memories

Two words this week and I hope I will be able to bring them together for you.

Mole.  I have one on the back of my neck and it has been there for as long as I can remember.  Occasionally, whomever is cutting my hair will catch it when cleaning up the back of my neck with a shaver but, most of the time, I have never thought much about it.

About 10 years ago or so, I remember one of my children pointing at it and asking what it was.  Without a second thought, I told them 'It is my button'.  Naturally they asked me what it did and I did not know what to say so I told them to push it and find out.  Of course, that is exactly what they did and I had to make a decision as to what the button did.

Well, the only thing that came to mind at the time was to make a noise so I just made some random (and loud) sound which surprised everyone, myself included.  Of course, as soon as their shock and laughter died down slightly, my button was pushed again and I made another, different, and louder sound.  Of course, now all the kids needed to get in on the action and I had yet another problem of continual pushing of the button and the associated noise.

Being quick thinking for one of the first times in my life, I let them know that the button only worked twice per child, every day or hour (memory fails me as to what the actual time limit was).  The button worked anywhere, be it at the dinner table, while fishing, sitting at church, or just relaxing on the couch.  I had to come up with different sounds, sometimes, looking like it was going to be quite loud and then just emitting a quiet beep or cough.  Other times, I would bray like a donkey at the dinner table, much to the dismay of my wife.

My kids don't push the button much anymore but Forrest still thinks of it every once in a while and pushes it just to hear what odd sound comes out of my mouth.  But they still remember the button.  They remember that as something special that they had with dad and with no one else.  My hope is that, 10 or 20 years from now, when they have their kids, they will find their 'button'.  It may not be something like the mole on the back of my neck or a mark on their leg but it will be something special just between them and their kids.

All those years from now, I hope that they remember dad and his button.  I hope that they create these special connections with their kids.  Money is always nice and makes living easier but nothing lasts and makes a mark like a memory.  They may not remember this exact memory but they will remember other things that we have done and experienced together.

Perhaps it will be that school day we played hooky together and spent the day in the powder or it may be the day we spent fishing together.  Perhaps it may even be a shared appreciation for horrible puns or math.  I don't know what it will but I want them to have a broad range of choices as to what stands out and what they look back on with fond appreciation.

L is for Lungs

Just like my kidneys, I never worried about my lungs.  Even 1.5 years ago when a 'rounded atelectasis' was seen on my lower right lung, I did not think much about it at all.  I am thinking a lot about it now.

It has slowly grown over the last 1.5 years, leading us to believe that it is not a rounded atelectasis but, rather, a carcinoid metastases.  We still did not worry too much about it until yesterday.  I went in for my routine visit with my local oncologist and he listened to my chest and could not detect any breath sounds in my right lung and said that there was a 'dull' sound when he tapped on it.

After my visit, he had me get a chest x-ray immediately to try and identify the reason for the sounds and that x-ray showed that I had significant pleural effusion on the right lobe.  That is a fancy way of saying that the sack that contains the lung had a large build-up of fluid that was causing some of my shortness of breath.

Well, Friday morning, I was quickly referred to a pulminologist (is there a specialist I haven't seen yet???) who inserted a needle into my lung and drained off some fluid.  By some, I mean 1500 milliliters.  That two liter bottle of soda you just got at the store; it was three quarters of that.  When draining fluid, he never draws more than 1800 milliliters and draining fluid starts to hurt as it goes longer so I had him stop before it was done.

When you drain fluid off of the lungs, there are three possibilities.  First, you can have clear fluid which is usually not caused by any critical event but the reason for the fluid still needs to be found.  Second, it can be cloudy which usually means that there is an infection of some sort.  Third, it can be bloody which indicates one of tuberculosis, heart issues, or cancer.  While we don't have the official answer yet, you know, just like I do, why my fluid was bloody.

We then did another chest x-ray to ensure that he had not punctured the lung and got another surprise.  My lower lobe did not inflate and the esophagus deflected to the right side.  What this means is that the area that was cleared of fluid did not re-inflate the lung and that the vacuum that was created, pulled my internal organs to the right.  This indicates that I now have a collapsed right lower lung and that is something that will not repair itself with time.  We also still saw a significant amount of fluid in the pleura so there is more fluid that can be drained but the collapsed lung means there is not any point...

What do we do at this point?  I don't know.  I believe that a lobectomy can be performed to prevent the cancer from spreading further in the lung and I am going to schedule an appointment with my doctors in New Orleans to consult with them.  I do know that the prognosis with lung carcinoid is similar to that of my abdominal carcinoid but don't know if that assumes resection of the diseased lung.  I do know that fluid will continue to accumulate and that we can go back and drain it again if the shortness of breath gets too bad.

So, when you see me walking exceptionally slowly into or from work at the MDIOC, it is not because I am being lazy but because I am trying not to lose my breath.  Lack of lung capacity means many of my goals are probably out of reach at this point (don't think being moderately to severely anemic and having 2/3 lung capacity doesn't match up well with 14,000 feet of elevation).  I don't know what the prognosis is at this point.  I don't know what path we are taking.  I don't know what to expect in the future and I don't know how this affects other plans.

What I do know is that I'm not dead yet.  It is coming.  It is closer than it was before but that is true for you too.  It sucks.  It is not fair.  It is not fun.  I hope that I can continue to annoy you and everyone else for years to come and I am going to finish this alphabet and then some.

K is for Kidney

The War on carcinoid cancer is almost always lost in the liver.  Steve Jobs was able to get a liver transplant but it still was not sufficient to win the war.  My liver was about 20% involved 2 years ago but I also lost the left lobe so I don't know where we are at now.  New liver growth does not come back cancer free so that does not reassure me.

Recurrent bowel obstructions are something I have experienced first hand and, although they get more and more difficult to address for the surgeon, they will not kill me if eventually addressed.  Lung and bone metastases are possible but, again, they are slow growing compared to the liver so I considered that a possibility but the liver was still the danger area.

I never considered the kidneys as endangered in any way.  The tumors have not been recorded as moving into the kidneys so there was no reason to worry.  Even in mid 2012, when the surgeons knew the tumors were wrapped around the ureters, I did not even think about the possibility that it would affect my kidneys.  In November 2012, the surgeons said I would need uretal stents forever and, even then, I did not think there was any worry about my kidneys.

I was told they needed to be swapped in 3-4 months and that I could just have that done by a urologist in Colorado Springs so I got together with one in Colorado Springs.    The urologist felt that 3-4 months was too soon and we were going to try for 6 months.  Well, at 5 months, the stents got plugged and we swapped them.  My Creatinine level rose from a normal 1.0 to about 2.2 after the swap which indicated kidney damage but I did not know that.  So much for being a partner in my treatment...

The new stents used a material that should be good for 12 months but we decided to swap at 9 months because the previous stents plugged earlier than the doctor expected.  Well, at 9 months, we did a urine culture and determined that I had a urinary tract infection and we got on some antibiotics.  Unfortunately, we chose an antibiotic that is not recommended for people with significant kidney damage and, again, not taking an active position within my treatment hurt me because my creatinine was now up to 6 and rebounded to 4.

Now I knew that things were bad because the urologist asked me "who is your nephrologist?" and my answer was "What is a nephrologist?".  I now knew that I had to be an active participant in managing this situation and I started reading and learning.  One of the first things I learned is that creatinine is measured on a logarithmic scale similar to decibels or earthquakes.  This means a creatinine of 2 is roughly twice as bad as a normal creatinine of 1.  A creatinine of 3 is about twice as bad as a creatinine of 2 and a creatinine of 4 is twice as bad as a creatinine of 3.

Now the exponent base is not exactly 2 because my current creatinine of 4.5ish gives a liver function of about 15-18% rather than the 9% or so that a 4.5 would give with a base of 2.  Regardless, it is bad and, when it hits 10% or so, I am going to be forced onto dialysis.

The other thing that the kidneys have done to me is destroy my hemoglobin levels and make me quite anemic.  Prior to my the start of 2012, I consistently had hemoglobin levels of 15-16 which is exactly why my lungs would never give out before my heart, legs, or arms.  Since the start of 2012, my hemoglobin has been on a fairly linear decent.  I hit a hemoglobin level of 12 around my mid 2012 surgery.  It dropped to 10 in mid 2013 and it is currently hovering in the 8s, getting as low as 7.7.

What that means is that my body is not able to get nearly as much oxygen from my lungs to my heart and other muscles.  We live in Colorado Springs, at about 7000 feet above sea level and the air here has about 80% of the oxygen available at sea level.  People then often go skiing and most ski mountains have summits around 11000 feet where the air has about 66% of the oxygen at sea level.  Many tourists and locals also go to the top of Pikes Peak either by foot or by car where the oxygen is now at 58% of sea level.

Now, I have had a couple of years to acclimate to my 50% reduction in oxygen carrying capability so it is not quite that extreme as people who fly here from sea level and immediately do these things but I can completely sympathize with them.  I am continually fatigued, and my face is paler that normal.  I get completely winded walking up two flights of stairs and have to stroll for the quarter mile walk into work or I will have to sit as soon as I reach the building.

I hit my lowest hemoglobin level of 7.7 about a 1.5 months ago and got a blood transfusion of 2 units which helped for a short term.  I am getting injections of aranesp every other week to try to kick start my bone marrow.  I take 325mg of iron twice a day to give my body plenty of iron to build hemoglobin and we are trying to avoid too many infusions as they carry more risk compared to aranesp injections. Our goal is to get my hemoglobin back up to at least 10 which should help me out quite a bit.

Let my kidney situation serve as a warning to you!  Take control of your health.  You and your doctor should be working together and you should not just assume (s)he will always do what is best for you.  Get second or third opinions.  Read and research what is going on.  Make sure that you are managing your own life rather than just being a passive passenger.

J is for Journey

"Life is a journey, not a guided tour".  This is the motto of the Run for Hope that we have done for the past 8 or so years.  Jeanne started the Run for Hope as her personal rage at the sky for her diagnosis and her continued struggle against Carcinoid Cancer.  We started joining the race either as walkers or as runners back in about 2005 and I have made every one since except for last year, when I was battling the Triple Bypass which occurred on the same day as the race.

As you already know, my journey started in September of 2001 when I knew something was wrong but could not place a finger on it.  I had gained about 20 pounds in the previous 6 months and had even started running with some friends at work to try and get rid of the weight.  I was having strange stomach pains and was starting to get fatigued and would vomit oddly.

My journey started with the completely unexpected diagnosis of cancer and has forced me to expand my knowledge into areas of medicine that were completely unanticipated.  I became an active participant in my treatment (most of the time) and the times I did not, I often paid the price for my negligence.

My journey has taught me things about what I can endure and what I cannot.  It has shown me friendship that includes sitting with me in my hospital room and watching an Avalanche game on a tiny, standard definition screen from uncomfortable chairs.  I have even seen the friendship that includes bringing me Krispy Kreme donuts for a treat as I recover at the hospital.

I have had the comfort of a simple stroking of my back by my beautiful wife as I sit in the ICU with 8+ different bags hanging, giving me a broad assortment of drugs and nutrition.  I have gotten to see my oldest son turn into a man and offer me a kidney, just to keep me around longer and to hear him, at 17 years of age, say "Dad, I love you" for no other reason than love as we are both heading up stairs to go to bed.

My journey has included seeing my kids become absolutely awesome skiers and boarders, leaving me behind on the moguls that I love so much.  I have seen my wife turn into the athlete that was hiding inside of her and have been able to see myself cross these three mountain passes on my bike (although next time will be in a car).  I have gone on awesome ski trips with friends to many resorts and enjoyed the time both on and off the slopes with them.

I have tried to not sat back and wait for things to happen to me.  I have tried (and sometimes failed) to seek out opportunities when they present themselves and urge you to do the same.  Life moves pretty fast.  If you don't stop and look around once in a while, you could miss it.

I is for Inspiration

Inspiration has been on my mind lately as to being an inspiration to others and thought I would talk about what inspires me.

For the longest time, one of my biggest inspirations was Lance Armstrong.  His story was perfect and gave me so much to aim for in my life.  I still draw some inspiration from him but nothing like before he was proven to be a lying, cheating jerk and 'confessed' to his doping.  He still did have cancer, his recovery was remarkable and his achievements, even if drug assisted, remain incredible.  I have read his book "It's not About the Bike" several times and it still can inspire me.

Lance talked about some of the recovery process during and after the chemo.  I specifically remember one section where he talks about finally getting back on the bike and doing some laps around the neighborhood:

By the end of my treatment we would ride for half an hour, a simple loop through the neighborhood... about halfway through the ride we reached a short steep hill. I thought I was keeping up, but the truth was, my friends were being kind. In fact, they were moving so slowly they almost fell over sideways on their bikes... I had little concept of how fast or how show we were moving.
All of a sudden, a figure moved up on my left. It was a woman in her 50s on a heavy mountain bike, and she went right by me.

This section of the book hit me quite hard because I so easily get into a mode of getting judgmental of what others are or are not doing.  I don't know where that person has been when I am passing them (or being passed by them as is more common).  I don't know what struggles they have seen and need to remember to respect them and where they are at.  We all need to remember that when we pass someone on the road, the trail, or just see them struggling to do something we consider trivial.  So, even a lying, cheating, mean spirited, self serving jerk of a cyclist can give us lessons in how to live our lives.

If there is another cyclist that inspires me now, it has to be Jens Voigt.  Jens is a 42 year old cyclist who rides for Trek in the 2014 Tour de France.  Two years ago, Jens won a mountain stage (are there any others?) in the US Pro Cycling Challenge here in Colorado.  Jens is always attacking.  He is always the man you need to mark because you never know when he will go.  Jens' most famous quote is "Shut up Legs" which is his battle cry to keep continuing on.  This year, he is the oldest rider in the 2014 tour and took the Polka Dot jersey today (best climber) in the opening stage.  Shut up legs indeed.

Wayne Gretzky inspires me.  He was the best hockey player ever and famously said that "You miss 100% of the shots you don't take."  If you don't try, you have already failed.  It doesn't mean to play or live with complete abandon but you must live and play, taking the opportunities that life presents to you.  I almost screwed that up this last week by not taking advantage of an opportunity to drive a 427 AC Cobra kit car for reasons I don't want to get into.  My wife encouraged me and I did it.  It was an awesome experience and my son said that my smile was the biggest he has ever seen on my face.

Mario Lemieux is another hockey player that inspires me.  He fought through diseases that would level any ordinary man and, had he actually been healthy throughout his career, may have passed Gretzky to be the Great One.  He had herniated disks in his back, non-hodgkins lymphoma, and chronic tendonitis.  In spite of this, he was one of the best and attempted two separate comebacks and eventually saved the Pittsburgh Penguins by buying them while playing for them in his second comeback.

My wife inspires me.  She has overcome so much and completed the Pikes Peak Ascent (half marathon with 7k+ feet of vertical gain in less than 6hrs and 30 minutes, something I could never do) in the required time.  She is not someone that most would look at and consider an athlete but through hard work and determination, she accomplished what she set out to do.  She makes me want to improve and get back to something close to where I was.  I went for my first ride in forever today and it was awful but Stephanie has had equally horrific rides, runs, and other outings but she keeps going.  She makes me want to improve and encourages me to truly be the best I can be.

Brian Einsweiler inspires me.  We first met about 12 years ago at the hockey rink when he was placed on our team and, although we did not know it at the time, he had lost a significant amount of weight and had gone from couch potato to athlete.  Brian ran the Leadville 100 trail race a few years ago, an event that so few enter and even fewer complete.  His transformation is something that makes me want to do better and to work harder.  He is also the only person I know who can put away a quadruple bypass and then ask what is for desert but that is another story...

Are there others that inspire me?  Of course but I don't want to write forever.  If I have not named you or your favorite athlete/historical figure (a few more of my heros are in a previous blog), I apologize but these are the ones I chose today.

H is for Hero

I struggled with H as well.  I don't use the word hero because I feel it applies to me but because it is a word people have used to describe me and I want to explore that impression.

There are obvious people that are selected for the word hero and they appear immediately in your mind.  You think of the police officer that is helping the child find his/her parent.  You think of the soldier risking his life for others whether he knows them or not.  You think of the firefighter carrying the unconscious grandmother out of a burning house.

There are other less obvious heros that you may be thinking of.  You may think of Mahatma Ghandi whose non violent protest finally brought about the equality for all people of South Africa.  You may think of Dr. Martin Luther Jr. who was taken way to young as he fought for equal rights for all here in the United States.  You may think of Rosa Parks who refused to give up her seat.  You may think of Susan B. Anthony who simply felt that the right to vote should be given to all people, not just men.

Several people have used the word hero to describe me and it, frankly, embarrasses and scares me.  I look at the people above and they achieve so much at such risk to themselves.  I survive and deal with my disease but there is no risk involved.  I don't disagree that I try to stand tall in spite of my prognosis and the humiliations that are imposed upon me by my disease but I do these things at no risk to myself.

It scares me for many reasons.  The biggest reason is my lack of understanding of why people give me this label.  Not knowing the reasons means that I could so easily disappoint others.  I worry that my actions or lack of action are going to make people see the true 'me' and see me as a failure.  I am scared because I feel people are wrong.  I tolerate.  I survive.  I don't believe that I do anything that is heroic in any way.

Go ahead and call me a hero if you feel it fits but know this; I will disappoint you;  I will fail;  I will do things that are very non-heroic;  I will behave in ways that heros never behave and I will collapse under the weight of all that is happening;  I will need others to bear me up and even carry me when things are too difficult.  I will try to always stand tall under the experience but I will fail at that as well.

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.