the same hard news

 

My medical team, Hill and Special Ed, went to a second opinion with me yesterday.

A very cheerful nurse checked me in and took my vitals, chirping the whole time that everything was going to be just fine.. that I was in very good hands.

Finally she asked, “what’s the diagnosis?”

“stage IV rectal cancer.”

“everything will be just fine.. he’s a very good doc.”   (!!?)

The doctor came in with my 70 page medical history.  He read it back to me to make sure that he had everything.

He examined me.  Poked and prodded.  He smiled and said, “you seem to be in terrific shape!”  (I’m getting there, I thought..  you should see me ride a mountain bike!)

He then took us to his office and presented us with an identical prognosis and treatment plan as my own oncologist had.

Without treatment, 6 months before I start being very sick indeed.  With very aggressive treatment, if everything goes perfectly, single digit years.

 

I had written to my own doc (through his assistant) to clear up what felt like a missing statistic.  Just what did he actually figure my chances were of responding well enough to the chemo to proceed to surgery?  And what were my chances of having a successful surgery that left me in remission?

“An almost impossible question.
Up front, I’d have to “guess” that he has about a 40-50% chance of getting to surgery and about a 50-60% chance once there that all disease is resectable.”

This new doc, when prompted said that my chance was about 30-50%.  Pretty similar.

This number game will be pretty tedious for a lot of you.  And for an individual, statistics obviously mean nothing.  Then again, it’s what we have to go on when trying to make a decision.

40% of a 60% chance, in order to get to a 20% chance of having single digit years..   Whoa.  (that’s just under a 5% chance, for those of you who are flummoxed by the math.  I can throw a bullseye left handed with better odds than that!).

And yet, this doctor felt that it was a no brainer.  Obviously I should go ahead with treatment.

The whole thing leaves me scratching my head a little.

 

Ok.  Just an update.  Second opinion was just like the first.

Now I’m going to tune up my mountain bike and spend a couple of days riding.  My brother and his wife and my good friend Todd have all come down from vermont to crash around in the woods with me!  Life is good!

 

Big love.

 

 

41 Responses to “the same hard news”

  1. Jack Luke

    Good luck Ezra! Major love from the world over is pouring to you. Especially from Scotland, cause you’re just such a cutie.

  2. Suz

    I second what Jack Luke says! And add especially from Tennessee!

  3. DeAnne

    I hope the weather is beautiful for mountain biking :)

  4. Eric Baumann

    There’s a 100% chance you will have a blast in the woods, enjoy the ride Ez, you deserve it.

  5. Jennie

    Big Love back to you, Ez. Hope you have a blast crashing around in the woods. xo

  6. tyler

    Can’t be stated any better than Mr. Baumann above. Love that your treatment plan includes bloody shins and ear to ear smiles.

  7. Jenny

    Big love back!

  8. megan

    you, a bike and the trees and the trails. this is a good picture. have fun! xo

  9. Pia

    Add some love coming your way from Hong Kong!

  10. Trevor

    Thing is, I’ll bet your left-handed dart game, without practice or forethought at all, is pretty damn good.
    Intertwined, Love your spirit. / Have a great ride. / Sorry for these struggles.

  11. Steph

    Did anyone mention HIPEC? It’s less crazy than it used to be but still quite extreme. I totally understand wanting the straight stats to make a sober decision. How else can you gain any perspective on such a moving target disease? Hoping for the very best, Ezra. Your community here is ready to support you on whatever path.

    https://cancer.ucsd.edu/treatments/heated-intraperitoneal-chemotherapy/Pages/how-HIPEC-works.aspx

  12. BubbRubb

    Good luck dude, hit me up if you wanna ride this weekend… I think Blue Mountain on Sunday AM!

  13. Ashley

    Big Love from Texas! Go get ‘em
    Thanks for the update

  14. Carrie

    Have a good ride. Love you Ezra! I hope that you can gather more info to help you chart a course.

  15. Just Me

    I can’t stop thinking about you. Seriously. And it’s all good thoughts. It’s strange because I’ve never met you or exchanged an email. You’ve given me tons of perspective. Mad love sent your way and keep it up. (being inspirational I mean). Everything will go just as the universe plans.

  16. Burnt Umber

    “Life Is Good”.

    Not many people know when it is going to end. They live their lives going on from day to day and then it’s over. You are not unique but you have insight only a handful of people ever do. Is this worth the price? The ticket for admission is steep.

    Enjoy what you have while you have it and to hell with everything else.

  17. Leah

    Ez- I’ve been thinking of you so much these last few days since I heard the news. Today I’m imagining you screaming through the woods, transcending all this impossible muddle and reaching endorphin enlightenment. With Todd and Amy and Zach I’m sure you’re feeling some good pain! Love to you. And strength. And peace.

  18. Eric

    Schralp The Gnarr!!!!!!!!!!!
    Love you too.

  19. jrobtp

    hahahahahaha! big love indeedy! i got thai monks on yer side on this. for whatever it’s worth.

  20. Tara

    Damn, Ezra. Big love, indeed. We’re all rooting for you down in Kentucky– a bunch of random, unknown, anonymous people. But hey, rooting is rooting. If you want to come crash that bike around Natural Gorge and the dicey mountains we have down here, let me know! We’ll make sure it’s a hell of a time!

  21. Colin

    Hi

    I heard a news story yesterday then when i read this recent blog post i wanted to provide a couple of links to the story. It might be something not suitable at all, something you have heard about already or maybe you know an experimental doctor you can talk to about it. Either way i wanted to pass it on in case it is of any use.
    http://www.wptv.com/dpp/news/national/emma-whitehead-t-cell-immunotherapy-treatment-doctors-use-hiv-aids-virus-to-save-girl-with-cancer

    http://io9.com/5308691/scientists-use-the-aids-virus-to-cure-cancer

    I also want to wish you and your beautiful family all the best. You seem to be a very special person with a life that i wish mine was like. Your photography is top quality, your bikes are truly beautiful and your two girls seem to both be just what you deserve.

    Regards
    Colin

  22. Andreas

    Mountain biking sure is fun. Even when there’s a foot of snow on the trails here in Stockholm. Enjoy your ride!

  23. Valancy Jane

    Hm. Well, perhaps you could get Hill to dress up as a slutty doctor and give you some good news. Just for a change of pace.

  24. Nikki

    live, live, live and love, love, love.

  25. Barb Trushaw

    Have you checked out a Cyberknife Center? My oncologist says they can pinpoint tumors, without destroying all the tissues around them, and have been quite successful…Worth a try..You are still in my thoughts and prayers..
    Barb

  26. Molly

    Sending love from Cincinnati!

  27. Charles Boyd

    I have been visiting your site for a long time now and I have always enjoyed the photos, the blog and the sense they provide of you, your wife, dog and friends. So, naturally I am upset and saddened by your recent discovery of yet another fling with the crab, but I am also heartened by both your positive and thoughtful response to it and by what it says about you and your vital approach to life. I do not know if you have had a chance to read Stephen Jay Gould’s short essay: The Median Isn’t The Message; on how he handled his diagnosis of abdominal mesothelioma which, like yours, is also a very serious form of cancer. The essay is a classic bit of writing and it clearly gives an approach to how one should interpret the statistics those guys in white jackets throw at you. I hope you get a chance to read it, if you have not already done so; the link is below.

    http://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

    The very best of luck to you and your family – I will be thinking about you!

  28. kimsanders

    ezra! just catching up on your blog … sending you big hugs and lots of love. take a moment to breathe and think (and ride hard). you have always been an old soul (so clear to me now, looking back on 5th grade) ~ you will make the best decision with your family. thinking of you, as always. xoxo kim

  29. Gillian Caldwell

    Hey Ez. Dad alerted us to this. Thinking of you and yours and sending love — I don’t think I would have your poise in those shoes. I don’t know what else to say.

  30. Will

    Sending love from Scranton, Pennsylvania. Been reading your blog for awhile now. You’re in my thoughts every now & again and I never met you. Your story, pictures, videos and words are so real, clever and thought provoking that I feel like I know you or knew you in a past life.

    I’m sending a ton of hugs, Ezra. From what I’ve read I think you’re an incredible person with great insight, amazing talent and a huge heart.

  31. kid37

    I’m not good at maths. But if everything goes succesfully, you’re 100 %! It’s like you’ve said, for the individual statistics mean next to nothing. Best of luck!

  32. Jay

    Big love back atcha, Ezra, from Austin, Texas. Deeply touched by your generosity and eloquence, with the beauty of your images in every form, and with your amazing courage and strength. All we can do is say we care, and we do.

  33. Will

    Ezra,

    I’ve been reading your blog for over a year now. I’m tearing up at these last few posts. I’m sending big love from Scranton, Pennsylvania. I heard about your blog on NPR awhile back and I remember the author writing about how they never met you but felt like they knew you. I feel that way too. I feel like you’re a friend of mine. You’re in my thoughts and I love you dude. Your words, pictures, bicycles, videos are amazing.

    Big love!

  34. delia

    oh geeze- huge hugs coming your way from total strangers. I hope you are having a blast mountain biking!

  35. stephanie

    Ezra, hi – I’m another friend of a friend who has been been consistently moved & inspired by your writing, work & photos over the past couple of years. Thanks for that! Sending lots of clarity your way as you decide how best to move through these tough decisions…like you, I have a very wise dog, and have learned a lot by reflecting on how he proceeds through his existence – always present, full of joy, and up for anything.

  36. Alicia

    You know, Ezra, they say the world will end on Friday December 21st, so maybe being sick isn’t really that big a deal :)

    Now, seriously, you are such a wonderful example to all of us. I am deeply touched by your grace and unending sense of humor, as everyone here is.

    Many good thoughts and hugs go your way, to you, Putney and Hill.

  37. Kamma

    Big Love indeed Ezra. You are an inspiration of living life to the fullest. Peace and love be with you and yours as you choose your path.

  38. Trudi Cohen

    Hard news in this darkest time of the year, for all of us and for you especially. Still, the light glimmers in everything you write, and everything you do. Thank you for being so strong and so inspiring. John joins me in sending big love to you!

  39. Cyclin' Missy

    Much love from Michigan, Ezra.

  40. Noah

    Ez… Sending love and good juju on your birthday. Thank you for sharing yourself fully with us. As you said, no one gets out alive. We never know how long we’ve got. In the meantime, you are living richly; you’re surrounded by love and beauty. I aspire to do the same. I want to be like you when I grow up. Big love. -Noah

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