Just to say.

2008 has been quite a year. My gut response is, “thank god it’s almost over.”  The truth is, though, it was pretty fantastic in a handful of ways.  I may have gotten cancer, which was REALLY inconvenient, but that would be a terrible way to sum up the year.

At the beginning of 2008 I built and sold my first bike (thank you matthew machine!) and since then have built nearly 20 more (the current wait list is in the 4-6 month range).  Over the course of the winter and spring, my step father contracted and then survived a particularly brutal strain of hepatitis A (something he ate in vietnam, we think, which sent him to a place like purgatory for several months).  In the spring, my little sister graduated from Columbia U.  Over the summer, my parents bought an apartment just down the street from Hill and me, and after about 8 years of living in Kathmandu, are retiring to NYC (though I don’t think either of them plans to actually RETIRE any time soon).  In the fall, Hill and I managed to get up to Nova Scotia despite cancer complications.  Also in the fall, the people of these united states, after 8 years of tyranny, had the good sense to put a black man with a funny name in the white house..  an act that goes miles to restore my faith in humanity, and my sense of the potential of this GREAT NATION!  Recently, I managed to make it to 35.  Alive.  And most significant of all, to me at least, Hillary L. Nanney agreed to marry me.  It has been a year to remember, and memory is merciful.  There was a pot of fish chowder (with fresh chantarelles) that we made up in N.S. that will be more significant in my memory than the misery of chemotherapy.

There has been a bit of a change in the treatment plan.  There isn’t any more lukovorin(?!).  It’s a vitamin that they drip you with to potentiate the i.v. 5FU.  So they’ve switched me to oral 5FU.  The upside to this is that i don’t have to wear a pump around.  The downside is that I have to take the stuff twice a day for two weeks straight out of every three.. “for 8 months instead of 6.”  “8 months instead of 6!?  what happened to 4?”  “I’m sorry if I ever said 4.”

Yesterday, they also started me on Avastin.  Avastin is a drug that turns off your body’s ability to grow new capillaries.  The idea is to isolate and starve tumors, or in this case, potential future tumors.  Naturally, though, it makes healing from minor cuts and bruises pretty hard.  That added to the wildly diminished white cell counts from the chemotherapy makes it absolutely necessary that I get NO cuts or scrapes or anything else.  They have all but forbidden me from working in the shop.  As it is, I don’t even weld with gloves on.  They’re telling me now, that I shouldn’t so much as get out of bed without them.

I walked out the door of Alberto’s office yesterday, and immediately my hands went pins and needles numb.  I was talking with Hill on the phone, and had to cut it short for fear of dropping the thing.  It was nearly impossible to get change out of my pocket to get on the bus.  It was a cold day in NYC yesterday and once my hands warmed up a little, they went back to normal.  I got off the bus up in my neighborhood, and they went instantly tingly again.  My hands have become (very suddenly) SO cold sensitive, that last night pouring Billy a cold beer from the fridge got my finger tips numb…  rinsed my hands off with cold tap water after feeding the beasts, same thing.  I did a little google search this morning, and it turns out to be a pretty common side effect of the oxaliplatin.  Strange nueropathy.

Emotionally, I’m pretty beat up.  Enough.  I’m ready to be better.  I have a lot to do.  I know in my heart that I have this thing by the tail, but the marathon quality of the fight is pretty daunting.  I’m just exhausted.  Hillary continues to be a hero.  She pulls her weight and about two thirds of mine around the house, and works, AND is applying to grad school.  I can’t possibly be much fun to be around these days, but she continues un-phased.

I will try to get back into a bit more of a rhythm with this blog.  It’s been hard lately to do it, somehow.  Thank you all for soldiering on with me.

0 Replies to “Just to say.”

  1. The best part first – Congrats on the getting married thing. That is wicked cool.

    Yes, you have had one hella shitty year but I think it’s so great and an inspiration that you continue to focus on the good things and not dwell on the bad. You inspire me.

    Here’s to a great 2009 –

    As always, sending good thoughts!

  2. Oh Ezra, what a year. Thank you for sharing as much as you have with all of us out here. Love to you, Hillary, the beasts and your family. The circle of people that holds you in our hearts and thoughts is so incredibly far reaching. I can hardly imagine how many people you have touched by sharing your life with such honesty, humor and strength. Enjoy the holidays, Ez. Keep going and please know that you are loved.

    xo.

  3. Hey, thank YOU for sharing this heart breaking, incredible time with us! You have nothing but better and better things to look forward to. I am always thinking of you and your recovery and I am soooo happy about you and Hillary! Yay!!! Here’s to an awesome 2009!

  4. Inspiring. Cancer or no, it sounds like you have a great life. And after this cancer decides to fuck off and die, you’ll be in even better shape. Really really hoping 2009 is even better for you!

  5. Thanks for sharing ezra and hillary. The words of your experience are helping many open up about cancer, treatment, and survival. Twenty years ago when my mom was diagnosed, cancer was only a word, scornfully crossing the lips of the uneducated and inexperienced. it was assumed a death sentence. The sharing of this time in your life will bring this conversation to the surface for many stuck under the weight of the illness. Hopefully it can bring them some float. good luck in 2009. if it is anything like 2008, you’ll be the bicycling, dancing, surviving mayor of harlem.

  6. Thank YOU Ezra. I’m still glad you were happy to make me a bike, and hope that mine was the first customer of many many more!

    May your next 4….6….8 months be trouble free and prosperous!

  7. it’s been said already many times before, and i don’t know how to say it differently, but i find the way you write here about how you are taking everything that is happenning to you, and your general approach to life so inspiring and uplifting. i hope you continue to write here and touch the life of so many people. i wish you ,hillary , and puteny a happy new year.

  8. We’re with you every step of the way Ezra and anytime you wish to raise a smile or two – just give a ring on that bicycle bell of yours and think of sexagenarian runners??

    Will be calling ’round 10pm ( UK time ) tomorrow for a Christmas chat and to wish you many Felicitations on your engagement to Hillary – what an absolute joy!

    With love and shlalagashle,
    Nigel and Laura. XXX

  9. Ezra, you’ve taken the bad along with the good in a really graceful and noble way. Congrats on the good fortune to have Hill say yes! That’s really fantastic. Good luck or should I say better luck in ’09 and I hope to maybe one day add my name to the ever growing wait list for one of your bikes. Keep on keepin’ on.

  10. It’s ok not to be strong every day. That’s what family, fiancees, friends and dogs are there for. To carry you over the rough spots. Even random internet strangers are pulling for you! Merry Christmas!

  11. hey. good to see you earlier! and yes, it has been quite a year and i hope your next is a little less eventful 🙂

    have a wonderful, wonderful holiday and an awesome next year.

  12. you’re a true inspiration, ezra. congratulations on your engagement and thank you for sharing your story. here’s to a restful holiday.

  13. Ezra

    My best wishes for a happy, healthy and wonderful 2009. We’ve never met and if it wasn’t for flickr I probably wouldn’t have known about your beautiful bicycles. Thanks for sharing your courage and challenges with us it is inspiring. Its a long road but you can do it and it sounds like the support system you have in place is dynamite. Congratulations on getting Hill to agree to marry you, a signifcant but wonderful step that. Best of luck, wishes and remember Allez.

    Yme.

  14. hello.
    i’ve been following your blog for months, just too nervous to speak up i guess…
    i’m grateful to you for sharing your story so openly, so honestly… i’ve laughed and cried and screamed “yes” outloud with excitement while reading your posts day to day. you are an inspirational individual. there’s a phrase that is tagged around downtown portland oregon (where i live), i’d like to say it to you. “because you exist, i have hope.” truly.

    cheers to the magic moments of 2008 and all of the goodness that lies ahead.
    sarah

  15. ’09’s gonna be better, man. you have nowhere to go but up. i’ve told ya before, fast ezra. yer a fuckin’ warrior. and that goes for yer lady too.

  16. Ezra, thank you so much for sharing your story with such honesty and grit. As for this:

    “They have all but forbidden me from working in the shop.” — don’t they know idle hands are the devil’s workshop? You have such creative energy you will probably use this as an excuse to invent cutting-edge (no pun intended) bicycle components made out of Sculpy.

    Also very glad for you that Hillary still “likes your coffee!” Raising a mug in a toast to generating health, peace and happiness in the new year.

  17. I have been following your photography since before it cataloged this part of your journey. I continue to read and send healthy happy cancer-free vibes your way. I hope that this new year come with so many beautiful things for you and yours.

  18. Best wishes for the coming year to you and Hill and Putney and family. Keep looking ahead and finding joy in the moment. I hope you know that there are many people like me who do not know you directly but who you have touched with your writing and photography. And we care about you and send our loving support.

  19. Hey there, old friend, I am awed and inspired by your story. Many congratulations on your engagement, your new business, your amazing attitude during diagnosis & treatment. People here have already said it better than I ever could, but I wanted to chime in with my good wishes

    *lifting a glass of champagne in the general direction of NYC*

    Mend well & love hard in 2009!
    Anneke