The John Report, updated

January was a rough month for John, as he reports below. Nonetheless, his spirits are good, and he keeps on trucking. I’m awfully glad Mr. Butler made that interception in the last seconds of last night’s game, though: if not quite a Lazarus effect, it brought John out of his chair in jubilant exultation. I tend to dismiss “mere” sporting events as pretty irrelevant but in fact, they can literally give people something to cheer about and for that, I’m grateful.

Here’s his most recent update, circa 24 hours ago:

The Grand Adventure Part IX: Snowed in!

My friends! January has been long.

Some of you have been privy to my struggle with long term Mystery Pain™ stretching back to last summer. At first I thought it was just pulled stitches left over from surgery. Later I guessed I had given myself a hernia. Then I wondered if I had somehow pulled the muscles of my intestines. Finally, the pain was so fierce that I figured it had to be kidney stones. Had to be something, right? We put the last of my chemo treatments on hold so that I could drink radioactive kool-aid and get blasted by magnets. The scan revealed two things, first being that chemo wasn’t doing me a lick of good. None at all. Second, Mystery Pain™ was most obviously originating from two humongous blood clots that had formed on the sides of each kidney, left-over party favors from both surgery and chemo. Hmmm boy do they have my attention. Walking is a task. Lifting heavy objects is out. It pretty much hurts to exist, which is exhausting, because I like existing. Sometimes after a doctor’s visit they’ll give you a choice of lollipops or some such candy. In my case I got a three month’s supply of scary ass needles to slap into my own stomach twice daily all in the name of thinning my blood. January has been long.

So chemo is out. I’m actually pretty grateful for that, actually, and in many regards, pain be damned, I actually feel a lot better. It’s left me with some pretty serious side effects, nerve damage and other such pleasantries, that may heal, may not. At the urging of my trusted nurses, I am trying a new drug called Erbitux, a targeted therapy that was designed for exactly the type of butt cancer that plagues yours truly. How lucky am I, huh? It’s not technically a chemo drug and the toxicity is low. The one side effect, I was told, would be a light rash. The rash itself would serve as indicator that the drug is working. Well, working it must be! Gracing my face is now the most obscene light rash you’ve ever witnessed. It’s absolute carnage. Holy shit I thought I had it bad in high school. My face now resembles a war zone on the volcanic surface of the planet Zits. Light rash my ass. Doctors should be required to personally sample every treatment they prescribe.

Yeah, January has been a bit of a slog. Am I trying to survive the cancer or the treatment? I sometimes feel that when cancer patients are urged to “be strong,” the real fight is against all the crap the doctors throw at you. There is no concern for the long term effects of their treatment, since to them death is already a forgone conclusion. And there doesn’t seem to be much interest in identifying the source of the disease, so long as the symptoms are contained. I won’t lie, I was a bit angry for a spell. I had made some big plans for western travel for the month of February. Mango groves in Hawaii, big mountain skiing in Alaska, swimming in Southern California and of course my second home of Colorado, all out the window so I can instead hobble around in the northeastern snow with a friggin cane. I started to get caught up in what I “should” be doing, rather than dealing with the reality at hand. I should be swimming in turquoise water. I should be chest deep in champagne powder. I should be drinking over-the-top bottles of Brunello with my crew in Telluride. I should be road tripping! Have you seen the price of gasoline?

But of course, the land of Should Be is a dangerous place to live. Desire leads to entitlement, which in turns leads to the constant gripe that things are unfair. And indeed, life seems unfair when held to the list of demands we deem so reasonable. Now with a clearer mind, I remember that I’m not driving this train. I have no hands on the wheel, and the only control I have in the matter is how I react to what falls upon me. That is what defines our character. None of us “deserve” anything, good or bad. Life tends to serve up exactly what we need, whether we recognize it or not. Hell, maybe these blood clots are somehow a boon. Maybe this is the universe’s way of telling me to sit down, stop wandering and write a damn book. It’s not bad advice.

So that’s about all I have to say about that. Sorry for falling off the radar. January has been, y’know, long. I plan on taking some down time for the Erbitux and blood thinners to do their thing. I’ll be keeping a low public profile, partly because walking is a painful chore, partly because currently my face scares children. All part of the grand adventure.

Hope you’re all warm, well fed and properly unshoveled wherever you are. Be well, my friends. Take care of those around you, even in the midst of your own struggles. Define your character. We’re all going through something, and no one gets through it alone.

I love you all. Live big. Go Patriots.
jf

People are always (kindly) asking how my brother is doing.  We are, as John says, "eternally grateful" for the support.  Here's his most recent update, circa 24 hours ago: </p><br />
<p>The Grand Adventure Part IX: Snowed in!</p><br />
<p>My friends! January has been long.</p><br />
<p>Some of you have been privy to my struggle with long term Mystery Pain™ stretching back to last summer. At first I thought it was just pulled stitches left over from surgery. Later I guessed I had given myself a hernia. Then I wondered if I had somehow pulled the muscles of my intestines. Finally, the pain was so fierce that I figured it had to be kidney stones. Had to be something, right? We put the last of my chemo treatments on hold so that I could drink radioactive kool-aid and get blasted by magnets. The scan revealed two things, first being that chemo wasn’t doing me a lick of good. None at all. Second, Mystery Pain™ was most obviously originating from two humongous blood clots that had formed on the sides of each kidney, left-over party favors from both surgery and chemo. Hmmm boy do they have my attention. Walking is a task. Lifting heavy objects is out. It pretty much hurts to exist, which is exhausting, because I like existing. Sometimes after a doctor’s visit they’ll give you a choice of lollipops or some such candy. In my case I got a three month’s supply of scary ass needles to slap into my own stomach twice daily all in the name of thinning my blood. January has been long.</p><br />
<p>So chemo is out. I’m actually pretty grateful for that, actually, and in many regards, pain be damned, I actually feel a lot better. It’s left me with some pretty serious side effects, nerve damage and other such pleasantries, that may heal, may not. At the urging of my trusted nurses, I am trying a new drug called Erbitux, a targeted therapy that was designed for exactly the type of butt cancer that plagues yours truly. How lucky am I, huh? It’s not technically a chemo drug and the toxicity is low. The one side effect, I was told, would be a light rash. The rash itself would serve as indicator that the drug is working. Well, working it must be! Gracing my face is now the most obscene light rash you’ve ever witnessed. It’s absolute carnage. Holy shit I thought I had it bad in high school. My face now resembles a war zone on the volcanic surface of the planet Zits. Light rash my ass. Doctors should be required to personally sample every treatment they prescribe.</p><br />
<p>Yeah, January has been a bit of a slog. Am I trying to survive the cancer or the treatment? I sometimes feel that when cancer patients are urged to “be strong,” the real fight is against all the crap the doctors throw at you. There is no concern for the long term effects of their treatment, since to them death is already a forgone conclusion. And there doesn’t seem to be much interest in identifying the source of the disease, so long as the symptoms are contained. I won’t lie, I was a bit angry for a spell. I had made some big plans for western travel for the month of February. Mango groves in Hawaii, big mountain skiing in Alaska, swimming in Southern California and of course my second home of Colorado, all out the window so I can instead hobble around in the northeastern snow with a friggin cane. I started to get caught up in what I “should” be doing, rather than dealing with the reality at hand. I should be swimming in turquoise water. I should be chest deep in champagne powder. I should be drinking over-the-top bottles of Brunello with my crew in Telluride. I should be road tripping! Have you seen the price of gasoline?</p><br />
<p>But of course, the land of Should Be is a dangerous place to live. Desire leads to entitlement, which in turns leads to the constant gripe that things are unfair. And indeed, life seems unfair when held to the list of demands we deem so reasonable. Now with a clearer mind, I remember that I’m not driving this train. I have no hands on the wheel, and the only control I have in the matter is how I react to what falls upon me. That is what defines our character. None of us “deserve” anything, good or bad. Life tends to serve up exactly what we need, whether we recognize it or not. Hell, maybe these blood clots are somehow a boon. Maybe this is the universe’s way of telling me to sit down, stop wandering and write a damn book. It’s not bad advice.</p><br />
<p>So that’s about all I have to say about that. Sorry for falling off the radar. January has been, y’know, long. I plan on taking some down time for the Erbitux and blood thinners to do their thing. I’ll be keeping a low public profile, partly because walking is a painful chore, partly because currently my face scares children. All part of the grand adventure.</p><br />
<p>Hope you’re all warm, well fed and properly unshoveled wherever you are. Be well, my friends. Take care of those around you, even in the midst of your own struggles. Define your character. We’re all going through something, and no one gets through it alone.</p><br />
<p>I love you all. Live big. Go Patriots.<br /><br />
jf

34 Comments

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34 responses to “The John Report, updated

  1. Cos Cobber

    I’m crying.

  2. Toonces

    Me too. He’s very special.

  3. Patrick

    It takes a talent to bring insight from this terrible situation.

    If it hasn’t already been considered, tacrolimus (localized dermatological immune suppressant) might aid with the rash if won’t interefere with the other drugs.

  4. Write the damn book. You have an extraordinary gift to make words jump off the page and into our hearts.

    • Peg

      What EOS said.

      You are so wise, John. At the end of the day, how we deal with what life deals us is who we are. As they say in my world, you’ve made a grand slam.

  5. I agree with EOSR. Write. Start with your blog posts, and whip them into book form: “Diary of a Survivor”, “Thoughts on the Crap Game of Life”, or whatever. Keep the positive spin you’ve already developed; use lots of irony, sarcasm, dark humor, light humor, and praeteritio (i.e, “Im not going to tell you about slapping needles into my own stomach twice daily,” and then proceed to do precisely that. Chaucer used praeteritio to great effect in The Canterbury Tales, and it still has them rolling in the aisles almost seven centuries later. Oh, yeah, remember what William James said: “The end of life is to do something that shall outlast life.” Get cracking. 🙂

  6. Riverside

    No words, really, just deep respect and compassion and continued hope.

  7. Martha

    Surrender can be a blessing. Love to you and your family!

    (Yes, write the book, you have a powerful ability with wirds!)

  8. Brad Benedict

    Thank you,

  9. TraderVic

    I must say, I’m blown away.

  10. just looking

    Beautifully written – start that book. I don’t know if they have trialed fasting with Erbitux but a dear friend who is having a second round of Chemo for Colon Cancer, this time irinotecan and avastin, is seeing much fewer side effects than was anticipated. The guy leading this is Valter Longo – vlongo@usc.edu Maybe worth an email?
    All the very best of luck.

  11. CL

    Wow. Beautifully written. Thanks for sharing.

  12. Hugs. As all above have said, just beautiful. Please write the book.

  13. CAC in Cincinnati

    God Bless you, John.

    I read your words and all the complications in my life slide off my shoulders. I admire your strength, courage and wisdom each time I read one of your posts. And, like your Dad and sister, you have a way with words—So WRITE THE BOOK!!!

    Sending wishes of love and admiration to you and your family.

  14. Beautifully written, inspirational piece.

  15. Walt

    I don’t know what to say, so let me just say this.

    We all come into the world in the same way. A slime covered screaming little bitch, who just wants an ass spanking and a tit to suck on. So we all start as an equal. And we all looked like aliens that no one could love. But we got over that. Except maybe the tit sucking, which I am still fond of.

    What defines us, I think, is how we go out. And we are all going out, so that makes us all equal as well. So it’s an even playing field, we all face the same end result, and what matters is not how long we face it, or when we face it. but how we face it.

    So. SO!! I wish you many length of years. But more importantly, I wish you the joys of today. That is what is most important. None of us know how many days we may have left. So enjoy every one you have. They are all very special and a gift, which we tend to take for granted. So don’t do that.

    Tell someone you love them. TODAY!! Hug a puppy. TODAY!! Lick a beaver. TODAY !! Laugh at a fart. TODAY!!

    Anyhows, be well. Enjoy today. Stay positive, and enjoy the moment. Never give up. Because surrender is never an option. Hope is always the path to follow.

    Best,
    Walt

  16. NYadgal

    I read always. Comment almost never. But want to say thank you for sharing these inspiring and thought-provoking words. Walt said it perfectly: Stay positive and enjoy the moment. Peace.

  17. Happiness in Glenville

    I read it to a few childhood friends in Europe to give them inspiration.
    Thank you.

    • SF from SF

      Wow! Wonderful hopeful you just knocked sense into me and many others I think. You are in my prayers way out here yonder on the west coast. Too cold to swim our waters but hope you make it out to so. CA soon to fulfill those wishes. Sit tight, get well and strong. You’ve touched a lot of hearts today. Write that book indeed.

  18. Anonymous

    Another read always, comment almost never.

    But John, you do know you are a special Angel, don’t you?

    I am twice your age and don’t have one ounce of your fortitude.

    Or that of your parents.

    You have changed lives. Many lives. I love, love your soul.

  19. stay angry John. it means that you still give a shit.

  20. CEA

    This might be the best life advice I’ve ever read:

    “But of course, the land of Should Be is a dangerous place to live. Desire leads to entitlement, which in turns leads to the constant gripe that things are unfair. And indeed, life seems unfair when held to the list of demands we deem so reasonable. Now with a clearer mind, I remember that I’m not driving this train. I have no hands on the wheel, and the only control I have in the matter is how I react to what falls upon me. That is what defines our character. None of us “deserve” anything, good or bad. Life tends to serve up exactly what we need, whether we recognize it or not.”

    John, you’re a rare man and a good one. There are many of us lurkers who are rooting for you and hang on your words.

  21. Anonymous

    i don’t know what to say other than be as you are. your words are amazing.

  22. Anonymous

    Amazing man, amazing insights into a horrific journey. Glad to have a real reason to be happy the Patriots won!

  23. Matt

    Strength and wisdom. Lots of it.

    Thank you for letting us read this. It is very inspiring.

  24. Valskee

    You were given this life because you were strong enough to live it. Thanks for sharing it too.

  25. Lisa

    What a man, a brave and magnificent man. I’m sorry I don’t know your son.

  26. Artie

    CF,
    I’ve met you once. I’ve never met John, or any of your other kids.

    You’ve done a wonderful job. (I’m sure Walt will credit your ex)

    Enjoy them for every second.

    Quick story – when I was diagnosed in Feb., 1995, my parents were in Florida. They wanted to come home right away, and I told them to stay put – there was nothing to do – I was fine.

    Had major surgery the first week of April – they came anyway. When I awoke from the depths of a 10+ hour surgery, the first person I saw was my beautiful wife. Next was my father, showing me that he had gotten me tv service so I could watch The Masters from my bed. I passed out for another long spell. I don’t remember that Masters, but I remember my Dad – trying to make life as normal as possible in MSKCC.

    A couple of months later, my Dad gave me a ride into NYC to get cleared for all “normal” activity. On the way home, he drove by Eisenhower Park on LI – my local driving range was there. He pulled in, and I got a demo club so we could hit a few golf balls – something I hadn’t even considered or cared about in months. It was a cool afternoon, and he and I shared a bucket of balls with borrowed golf clubs. I’ll never forget it.

    If he says he doesn’t need help, don’t listen. You’d both regret it.

    Best to you all.

  27. AJ

    We Already Know How To Cure Cancer
    By Bill Sardi
    February 3, 2015

    http://www.lewrockwell.com/2015/02/bill-sardi/do-we-know-how-to-cure-cancer/

  28. Elle

    Dear John,

    You may not know how many lives you are saving, in one form or another, with just the above post alone. My guess is at least everyone who has responded thus far, and many more who have not. Your gifts are immeasurable. You are in my prayers, for your suffering and strength, and in gratitude for the gift you have just given me.

    Please write the book.

  29. Mickster

    John, I’ve read your post several times and resisted replying until now. I’m your classic Catholic but your suffering really tests my faith. I am pissed. I just can’t understand how a just God can allow this. I will never understand this. Stay in touch. If there’s anything you miss or need that can be delivered or sent, just holler out. Head high.

  30. AK

    CF- I always enjoy your witty posts and it is evident that you have passed on you gift of writing to your son. What an incredible guy. John and I are around the same age and I am in absolute awe at the way he is handling this horrid disease. Many prayers to you and your family.