Fish tacos, obviously

I was in the shop yesterday morning working on Nose Bike mk2 when I got a call from the doc’s office.

“He wants you to come in right away..”

Fuck.  Usually he’s willing to give me GOOD news over the phone.  I figured this probably meant that they had found metastases.  Was starting to wonder how many months they’d give me, and what sort of motorcycle I would run out and buy (? the odd things that pop into your head when you’re pretty sure you’re going to die).

To re-create the conversation that Hill and I had with the doc, would be a nearly impossible exercise.  After an hour or so, what we were left with was essentially this..   The petscan showed no change and nothing new.

The facts are these:  I have a sudden rise in CEA marker.  A second blood test verifies the rise, and in fact shows a slight climb from the first.  The petscans have shown a spot in the area of the surgery that we have been tracking SINCE surgery which has been trending towards resolution, and which is consistent with the sort of inflammatory response you would expect from such an invasive procedure.  Why it is taking so long to resolve is unclear.  It is not getting worse, however.  There is neither growth, NOR increased uptake.  Because of its location it is not possible to biopsy this spot in a meaningful way.

My doc is feeling pretty freaked out by the elevated CEA markers.  He wants to give me more chemo to see if it makes those levels go down. There is no cancer that we can see, but if the CEA levels go down when I’m on chemo it could indicate that there was some hiding there! (tumors have to be pretty sizable to show up on a petscan).  In other words, using chemotherapy as a diagnostic tool.  I told him that I would not be doing this.  He acknowledged that the approach would be totally renegade and that it is never done, but that he wanted to anyway.

Hill and I got back home yesterday feeling as though we’d been put through a food processor.  When it is entirely plausible that you could be facing terminal illness, and your doc says ‘get in here right away,’ it’s pretty hard not to let your head go to grim places.  Once you’re in that head space, it takes a little while to settle back down.  Still this morning feeling as though I got in a fist fight yesterday.

We will continue to monitor the CEA levels.  We will continue to do frequent petscans.  We will continue to wait around for stage 4 cancer that could be lurking right under the surface.   In the mean time, I’ll be building nose bikes.  (the Cyrano, the Babs, the Steffie, the Shumlin..  the Pinocchio.. you get the idea).  I’m obsessed.

This from my mother yesterday-

Allegory: you are trapped in a dark room with a homicidal maniac.  He might put a knife to your throat any minute — or he might get bored and head off to a bar.  You have the option of wrapping yourself in shit and stinging nettles because word has it that homicidal maniacs hate that combination. Or you can ignore the bastard  and make some fish tacos.

57 Replies to “Fish tacos, obviously”

  1. Been reading this for a LONG time and this is the first time I’ve felt compelled to comment so let me be brief: I’m optimistic and am thinking positive things.

    Also, in certain situations, a properly executed fish taco can be as good (if not better) than any chemo.

  2. Positive thoughts, Ezra! Building nose bikes and making fish tacos has got to be healthier than “waiting around” for stage 4 cancer, so I hope that helps supress the specter of recurrence. Booo to unreliable CEA markers and “diagnostic” chemo. We will celebrate your healthy obsessions with some fish tacos in Amsterdam this weekend.

  3. Fish tacos. Fish tacos. Yes. I came here by way of the Dishwasher. My blog is closed so my totalitarian company couldn’t read it but if you want to read it you can I’ll add your e-mail. Actually I’ve been whining all summer about getting my toe cut off and also having bronchitis so you might not want to read it at all.
    Rebecca

  4. I utterly fail to understand how little we know about our biology. Seems like cancer just taunts us by throwing up impossible scenario after impossible scenario. But just as cancer is a mystery sometimes, so is the body’s ability to restore itself. It happens and leaves the docs just as baffled as your elevated CEA markers are. I hope the restorative process is at work here.

    But the biggest mystery of all to me is the appeal of a fish taco. But if it works …

    Godspeed, dude.

    Oh, a bike note: my brother in law built me a road bike based on a Ross frame this summer. He is more of a hobbyist than a pro … I think … but he has a lot of experience. Anyhow, he did this coz I moved to a sparsely populated are of VA and wanted a new diversion since the city would be 45 minutes away. I was stoked. Bought the shoes, a good helmet, shorts and went out on an adventure. Nine miles out I had already tumbled once trying to wrest my feet from the clips — and I HAD practiced! Then, slowing at an intersection a car pulled out suddenly and I was creeping along but had to stop. You know what comes next … feet stuck and I just tilted over in elegant slow motion from a dead stop. Broke my elbow.

    Doing rehab now and practicing the hell out of clipping and unclipping. I want to go back!

    Peace.

  5. fish tacos and nose bikes! plus i dont know one homicidal maniac that likes fish tacos! your mom is awesome. hill is the princess of peace, strength and everything that is good. go ezra! your cheering section is large and loud.

  6. I’ve never commented before either, but I have to say that I adore your mother. I have a friend in much the same situation. It’s a great allegory.

  7. After seeing my brother battle his blood cancer for some six years and it take over his life and bury him, live life to the fullest. You have a great attitude and that is most important. Make it wild salmon for the tacos.

  8. Your mum is a smart lady and I applaud your stance on not going back for more chemo. Egads. What a position to be put in. You are a strong man. Stronger than most. I admire you greatly.

    I know I’ve mentioned this in a past blog post but you might want to consider looking into a more holistic approach from this point forward. A while back I mentioned Inspire Health (http://www.inspirehealth.ca). They are here in Vancouver, BC but there must be an integrated cancer care centre like it in NYC. IH does work with people long distance though for what it’s worth.

    Also, Kris Carr, a fellow New Yorker like yourself, has kept a rather rare advanced form of cancer at bay pretty much with diet and attitude alone. Her blog, books and videos are worth seeking out.

    Mmm…fish tacos.

  9. made your aztec soup a couple days ago…its a new family favorite! quiet your mind, keep your hands busy, thinking of you in the hoosier state

  10. let me be the twelfth guy to say i love your mom, you, hill, putney, fish tacos, and your bikes. my gonna-die go-to is a hang glider.

  11. “I told him that I would not be doing this.” 🙂 SO much power in making that choice. It may feel like you were in a fist fight, but I think you won it. Hang tough. Bikes, cooking, travel, your beautiful family (including four-legged members) … that’s where it’s at.

    And with that I’m going to go make another donation to a local organization here that is working to develop blood tests for cancer. (Chemo, or any drug, or usually a series of drugs as a ‘diagnostic tool’ makes me fume.)

  12. The women in your life are freaking awesome. I am flat out in awe of your grace and bravery. Cancer is a cunning tricky fucker. Things can change with no reason or warning. You’re not at the motorcycles yet. Fish tacos FTW.

  13. Your blog has long since become a way of life for us over here…

    In turn we are with you in spirit every step of the way over there…

    Big love and salaams from the entire Clutterbuck clan – so too Granny Bekker.

  14. I must run in the same social circle as Valancy Jane, so by all means, fish tacos. Also, don’t wait. Get yourself a vintage Triumph Bonneville now.

  15. Not leaving my www because this is not about me but far more important things…fish tacos. I’ve never even HEARD of fish tacos? Has Mexico signed off on this? I applaud your mom, you and all those involved in landing roundhouse kicks to the face of cancer. Maybe a bike jousting rally where you close a street and have watermelons as cancer and you get medieval on ’em!? Naw – that’s too good for cancer and a waste of food. Stay strong Ezra!

  16. went to a new, little, cheap waterside restaurant last night and ordered (for the very first time!) fish tacos…don’t know why…never had the urge to eat them…never wanted to try them, now i know why…always in my thoughts and prayers, Ezra and Hillary…

    jill

  17. Oh Ezra. I’ve been watching and thinking about you guys and I’ll continue to do so. (I’m obviously the most terrible ever about emails, since I forgot to email you. Goodness it was awesome meeting you when you walked into my bookstore in Chicago.) take care of each other. Strangers from the Internet out here are cheering you on (even when they forget to email. ) 🙂

  18. You are the strongest person I have never met. Go make the fish tacos, and the nose bikes. Keeping your head in a good place is very powerful medicine.

    By the way, I know you’ve been given thousands of pieces of advice. But may I add meditating? just a little bit every day. It works wonders.

    Lots of love to you, Hill, Putney and your mother.

  19. Ezra. Hang in there and keep fighting. You’re an incredibly strong dude. That will never change. The Nose bike prototype looks really beautifully executed and fun to ride. The possibilities seem endless. I just read the other day that the Gov. of Vermont is from Putney, happens to be named Shumlin. You really building a bike for the Gov’ner?

  20. great! more chemo to trash your immune system and allow any remaining cancer to take free reign. good for you for saying no. conventional doctors, however well meaning have one bag of tricks. they have failed you miserably. look in other direction- fish tacos, snake oil.
    wise healers have been around for centuries. we had less cancer and less chemo

  21. That mom of yours needs to be bottled. I don’t know what the process for that would be, but I’d buy a fucking tanker truck of her. 🙂

    Do your thing, and live while you’re alive my friend.

  22. yep. enuff is enuff with that godawfull stuff.

    Maitake Mushrooms have been known to shrink tumors. AND they are delicious to boot. Maitake Fish tacos!! and some good beer. yeah.

  23. Nothing to say that hasn’t been said… So I’ll just send more good thoughts your way. Love you, Ez. Love and strength and good eatin’ to you and Hill.