Posts

Losing Gracefully

Play all the Seniors

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It is a question of timing.  
In basketball, it surfaces when the home team is trailing late in the game.  Fans admire the fighting spirit as their team presses, fouls, and spends timeouts hoping, against increasingly long odds, to pull out the win.  But it gradually becomes apparent that the game cannot be won.
At a dinner party, the question becomes obvious around midnight.  It’s been a lovely evening and some fun may still be squeezed out.  But the hosts look tired and momentum is fading.
So it comes down to this: How do you know when it’s time to make the graceful exit?  To be neither the party-pooper nor that last guest whom the hosts are just wishing would let them get to bed.  How does the coach know when hope is lost and it’s time to stop fouling, call one more timeout, and put all the seniors into the game,


And so it is with my stage 4 colon-to-liver-to-lung cancer.  
I want to be remembered as a fighter.  No one wants “Well it got tough and he quit” on his tombstone.  Yet it may …

I’m Not Complaining, But Sometimes I Wonder…

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I’ve had an ostomy for 10 years now.When I was told I’d have to have one due to colon cancer I had the normal, “Well that sounds pretty terrible” reaction. It was hard to imagine ever returning to normal life with part of my bowel poking out of me and a pouch hanging off my abdomen.But, as is often the case, I discovered that life does go on. That having an ostomy is not really a big deal unless I make it a big deal. Before too long most things were nearly back to normal…relationships, work, travel, exercise including marathons and the Ironman.Basically an ostomy is a medical technology that fixes a defect. I wear glasses too…another thing that fixes a medical defect. And that got me thinking about the “coolness” rankings of medical technology. Let’s keep it simple and rate just three devices:Ostomy - Uncool. OK, let’s face it, decidedly not cool. No need to be ashamed of it but don’t expect any compliments.Glasses - Depends. There was a time when wearing glasses was not cool at all…b…

Colon Cancer’s ‘Ick’ Factor…

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Trigger Alert: Some of the following paragraphs contain Facts. And these facts are related to Science. An alarming number of Americans find these concepts offensive…or irrelevant…or…something..? Please skip this if you are one of them. The passing of actor Chadwick Boseman from colon cancer was a surprise.  Hard to believe that the guy playing a superhero like the Black Panther one day can be gone the next.
There are reasons for wanting to keep a cancer diagnosis private, including the desire to keep working if you have just broken a huge Hollywood barrier.  But with Colorectal cancer, the ‘Ick’ factor may come into play as well.  
Let’s face it: People are understandably less-comfortable talking about that part of their body and that can result in them ignoring symptoms and delaying their first colonoscopy.  
While the guidelines are under review, the CDC recommends people of average risk have a colonoscopy at age 50 and those with an elevated risk such as a family history at age 45. If…

Are You Starting The Cancer Triathlon? The mental challenge may be the toughest part so draw on your past…

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A few years before I was diagnosed with colon cancer, I started doing triathlons.  I’d worked my way up to the 70.3 distance and was training for the full Ironman when I found out I’d be sidelined for a year of treatment.It seemed obvious that being in good physical condition as I headed into this would be an advantage but what surprised me was how much the triathlon experience also helped me mentally.  



My stage-3 diagnosis qualified me for the full cancer experience: Radiation, Surgery, and Chemo.  As my treatment progressed, I discovered that the three phases of it were much like the three stages of a triathlon.  The triathlon is a swim, a bike ride, and a run.  At the Ironman distance, it’s a 2.4 mile swim; a 112 mile bike; and a 26.2 mile marathon.
Physically both cancer treatment and a triathlon are challenging, but in very different ways. The stronger similarity is the mental cycle you go through…the little breaks between phases, the ups & downs along the way, and the cumulat…

Is This a Bad Day or a Good Day?

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I used to be able to get my body to do what I want.  All the basic functionality you expect with the equipment you're issued at birth plus a slow marathon or triathlon every so often.
Now that my body is failing me and a walk up the stairs can leave me breathless, it's frustrating.   Kind of like this lifetime deal I've had with my body is being broken.  Or, more accurately, it's being broken earlier than I expected it would.
When I compare how I feel some days to how I expected to feel at this age, it can seem like a bad day.
But then I wondered: What if I were a paraplegic?  Wouldn't simply being able to stand-up in the morning make it a great day?  
And that got me thinking about Steve Gleason the Saints player who has ALS aka Lou Gehrig’s disease and is now completely paralyzed.  Wouldn't something that I take for granted -  just being able to speak directly to my family - be his greatest day in years?

It may be obvious and I'm just catching up, but it hit m…

Your Doctor May Not Have Seen Those Movies

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As I emerged from the fog after my Friday morning colonoscopy, the doctor was telling my wife Carol that he saw some things he “did not like the look of”.  It would take a few days to get the biopsy results.  In the meantime, enjoy your weekend!
Early the following week, I received a call at work and the woman on the line said “Doctor would like to speak with you. Can you hold for a moment?”  
I immediately thought: This has to be good news!  We’ve all seen that movie, right?  If it’s bad news, the nurse says, “Doctor would like to discuss your test results.  Can you come to his office?”
Well my doctor apparently had not seen any of those movies because he came on the line and said “Hey, I have some bad news for you.”.
Even if your doctor delivers the bad news in person, don’t expect it to be in his nicely appointed, quiet office where you and your spouse sit on comfortable leather guest chairs and he’s behind his mahogany desk patiently going over the details of your case with seemingly …

Thinking You Could Die is Scary. Knowing You are Going to Die is Not.

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Many scary moments in a thriller center around death.  But the scariest scenes actually are about the possibility of death.  Knowing you are going to die, I have discovered, is not at all scary.  Sad and disappointing, yes…Scary, no.
There really are just three ways you can die.  
First is the lightning strike.  No time to be scared, just boom and you’re dead.  
Second is the scary one where you realize that death is a possibility.  Your car brakes fail coming down the mountain or the big wave pulls you out to sea…or, worst of all, there’s a maniac with a chainsaw.  Those moments when you are in peril and truly do not know if you will live or die are terrifying.


Third is my scenario. You know you are going to die and, in fact, have been given a schedule.  In my case it was eight to twelve months.  
I have come to believe that this is actually the best of the three.  
Unlike the lightning strike, I have time to reflect and to get my affairs in order.  I also have been put on warning to savio…

Do You Really Want to Know How I am Doing?

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I’ve always struggled speaking with people who are going through a personal crisis…the death of a loved one, a serious illness, etc.  
For a long time, I decided it was probably better to say nothing because I feared making them feel badly by bringing it up.  Not sure what my thinking was here: Chuck’s wife died last week but I bet he’s forgotten all about it so best not to say anything?
After discarding the ‘ignore it’ strategy I decided that, if I was going to acknowledge the subject, best to keep it short and positive.  So my conversation would quickly end with an “I’m sure it will be OK” or even more lame “Hang in there”.
Now that I’m on the receiving end, I’ve learned a few things.
Yes, it’s OK to ask me about my terminal illness.  It hasn’t slipped my mind so no worries about reminding me of that unpleasantness.Try to resist telling me about your uncle, cousin, or neighbor who also had cancer.  At a minimum, please omit the details of their long and painful death.If you want a lengt…

Playing the ‘C’ Card

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Going to chemo every few weeks is a good reality check.  If I started to feel sorry for myself, one look around the waiting room quickly snuffed that out as I saw people who’ve been dealt a far tougher hand.
I believe in avoiding self-pity.  And, for most of my 10 years living with cancer, I believed in avoiding the pity of others.  But shortly after my prognosis changed to ‘terminal’, I reconsidered that position.  
While I still did not want my friends and family to treat me differently, I realized that I should consider an exception for other people.  In particular, people like hotel managers, flight attendants, and maitre d’s. 


My first time playing the ‘C’-card worked out great.  My daughter Ella and I were in Wyoming and planning dinner at a mountain-top restaurant.  Their on-line reservation system asked: “Is this a special evening?”.   Well…OK…you asked.  So I responded that I have stage 4 cancer and this was a special father-daughter trip…likely our last together to Jackson Hole…

Planning Your Own Funeral. The Possibilities are Endless.

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I’m now seven months into my doctor’s 8-12 month prognosis.  I believe I’m going to be on the long end of that range yet it still seems prudent to do a little funeral planning.
I started with the basics:
Cremation or burial?  Cremation.Church or elsewhere?  Elsewhere.Traditional religious music or Jerry Jeff Walker?  Jerry Jeff Walker.
But then it dawned on me that this is the ultimate party planning opportunity.
I don't care much for parties so I would never plan one for myself or request anything elaborate if I had to attend one in my honor.  I’ll be at this one - kind of - but will have neither hosting duties nor the burden of small talk.
And this is not just my party, it’s my final party…my last wishes.  No one denies last wishes.
So this is like a grown-up game of Simon Says.  If I request that everyone wear a funny hat, then funny hats it shall be.  Who wants to be the dick who shows up without the hat Chris wanted…it was his final wish.  I say “Jump!” and funeral goers say “How h…

Who Turned-up the Gravity?

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When my doctor told me that the end is in sight, I asked him what it will be like.  Then I held my breath hoping he would not say “Weeks of babbling nonsense, complete incontinence, and horrible pain”.
There may be some of that coming but what he told me I’d feel most acutely is “tired”.


Well that doesn’t sound too bad, I thought.  And it still doesn’t but I am getting a clearer sense of what he meant.  Turns out there are levels of ‘tired’ that you don’t know about.  
First there’s the everyday tired we all know.  The kind where you need a good night’s sleep or maybe even a nap to recover.
Then there is the ‘totally beat’ tired.  It’s probably what Med students feel after 36 hours on-call.  I experienced it once when I did an Ironman.  After 140.6 miles of swim, bike, and run my tank was completely empty.  That kind of tired takes a little longer to recover from.
Next is ‘fatigue’.  It builds up when your activity level and rest time are out of balance for a long time.  Single-moms workin…

Why Are There No Positive Side Effects?

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Once you start cancer treatment you spend a lot of time talking about side effects.
Whether it’s surgery, radiation, or chemotherapy your doctor will begin by telling you all of the unintended consequences that may happen and then you will spend months in follow-ups telling the nurses about all of the side effects that do happen.
I get it…there’s a lot of cutting going on, radiation flying, and powerful drugs coursing through you.  Shit's gonna happen. The variety of side effects is amazing.  Over 10 years I’ve had just about every one you could imagine.  Oh, except hair loss…the chemo drugs used for colon cancer do not typically cause hair loss.  That would have been great except I’m mostly bald anyway,
So here’s what I don’t understand: With all of the powerful cutting, radiation, and drugs causing these random events in your body, why are none of those side effects positive?


Like why does your doctor never say: “This chemo may give you diarrhea and cause your scalp to bleed…but, od…

Is it Wrong to Give Postmortem Dating Advice to Your Wife?

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Knowing you are going to die presents an interesting question regarding your spouse: Do you provide postmortem dating guidance?
A terminal illness is different from the usual situations where a couple dissolves.  
Most common of course is divorce.  While you still may have feelings for each other, let’s face it, you’ve thrown that fish back in the lake and she’s fair game for the next guy,
Second is passing away at an advanced age.  If I died at 90 and left Carol at 88, I’m not too concerned if she finds a nice old guy to watch Jeopardy with.
Third is that sudden heart attack, car crash or, on the cooler side, Grizzly attack.  Anyway, no time to think about whether that guy in her yoga class is poised to make his move.
But when you’ve been given 8-12 months, you have some time to ponder this.
Full disclosure: Carol has said she has no desire to re-marry.  I know that she is sincere about that and it’s touching but I have encouraged her to keep the possibility open in the future.  She is bea…

The Four Stages of Cancer Redefined

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Once people know that you have cancer some will reveal that they too have - or had - cancer.  While it is comforting to be reminded that you are not alone in this, the conversation sometimes evolves into them explaining what a harrowing experience they’ve had.
This can be dangerous territory if the person moves too rapidly into their story without first understanding the basics of yours.  I’ve listened to a number of people declare that they too are in the Cancer Club and then describe in great detail the suspicious mole removed from their forehead.
This is like being introduced  to Joe “who was in the Army too” and then attempting to bond over the tough duty you endured while playing tuba in the Army band.  If Joe is missing a limb, you may want to dial it back.
The point is that not all cancer is equal.  I don't mean to sound harsh, but it's true.
Doctors use stages to describe cancer:Stage 0 - Abnormal cells with the potential to become cancer.Stage I - Cancer is small in only …

Tip: If You Have Colorectal Cancer, Pick a Doctor with Small Hands

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Hand size matters.  It’s a lesson I learned while having my colorectal cancer diagnosed and staged at the University of Chicago and the Mayo Clinic.  
Of course you want the knowledgeable doctor but, all other things being equal, go for the petite female not the Big-10 lineman with fingers like sausages.


It’s more complicated at a teaching hospital like Chicago and Mayo because your doctor is trailed by a team of residents and fellows, all of whom want to “take a look”.  
I’m all for education and I know that new doctors must get hands-on (or fingers-in) experience so my default answer has always been “sure”.  
There are just two situations where I have insisted on the experienced doctor or nurse.  
First is when the surgery has been described as a complicated, one-shot procedure.  
Second is when the person in-training has made multiple unsuccessful attempts and now looks terrified or, as I experienced several times, is actually crying.  
I think that’s reasonable.

Lessons Learned on the Medical Road

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Below are a few lessons that I’ve learned on this journey.  Hopefully they are useful.
Proper Cancer Staging and Correct Diagnosis are Critical at the OutsetThis basic information determines the game plan for your treatment.  If it’s not accurate, you can solve the wrong problem or solve it incompletely.  I mentor other cancer patients and have heard about treatments that turned out to be misguided by an inaccurate initial staging of the cancer.  If you detect any crack in your doctor’s confidence ask them to explain how they arrived at your diagnosis, how certain they are, and whether additional testing could be helpful.  You are setting off on a journey and you better make sure you know where you are going.


Don’t be afraid to ask these questions:How many cases like mine have you seen?Is there another doctor who is more experienced than you are?What would you do if you were me?How hard you press on these questions is related to how serious and unusual your case is.  My initial diagnosi…

Getting Your Affairs In Order is Harder Than it Sounds

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A number of cliches kick into gear when your doctor says you have 8-12 months left to live.  One of those is ‘Get your affairs in order’.
Some aspects of that are pure logistics. Where do I want to be when I die?  My choice is hospice.  I like the idea of staying at home as long as I can but when it gets intensely medical and unpleasant, I’d prefer not to have that happen in our home.  
Dying elsewhere also avoids the “Glad you could come home for Christmas…you are staying in the bedroom where dad kicked the bucket. Sleep well” scenario.
Others are the practical things around the house. Where are those furnace filters?  How do you change the lightbulbs in the 15 foot ceiling?  What’s a circuit breaker?
And there’s the question of re-connecting with friends whom you haven’t been in contact with lately. That’s a tough one. It seems inconsiderate to leave the party and not say goodbye but it’s a hard topic to ease into: “It’s been awhile. Hope you are well.  Just wanted to let you know that …