It has been nearly two months since my last confession.

I went in to the hospital yesterday for a regular endoscopic ultrasound check up.  There was some confusion about whether they’d be going in from the front or the back.

“what are you here for”

“endoscopic ultrasound”

“through the mouth, right?”

“I beg your pardon?..  I thought you said, ‘through the mouth'”

“yes?”

“NO!”

“Oh..  that’s what it says here..  let me make a phone call”

She came back smiling, “you’re right..  it makes sense now,” and started writing “EUS, PER RECTUM!” all over the paper work.

“Thank you..  through the mouth would have been an awfully long way to go!  Where are you from, dear?”

“Haiti”

My heart sank.  She had just come back from two weeks down there helping with the relief effort.

All is clear.  I’m not sure how long that makes it.  There was never really a day when they said, “it’s official.. as of right now, you no longer have cancer!”  Suffice it to say, this marks another period of time in remission.

I wrote to a good old friend the other day and had to acknowledge that I’m running into some physical/emotional issues in the aftermath of this last year that are far less concrete than the disease itself.  I’ve heard others talk about this.  When you’re in treatment, you’ve got something solid to work on.  You drag yourself out of bed and show up for your appointments.  That’s about all anyone expects from you, and if you’re able to do more than that, you’re a hero.

Once cured, I think the expectation is that you should feel such relief at being ok, that nothing can stop you.  Don’t sweat the small stuff, and it’s ALL small stuff after you’ve been through THAT!..  right?  It doesn’t really work out that way.

At the beginning of the summer I told my older brother that by september I’d be back to normal.  He said “bullshit.”  In just the last month or so, I have finally felt well enough to start exercising in earnest again.  I’m running three or four times a week.  Short runs..  mostly 4-5 miles, with a longer run (7 or 8 miles) every fourth or fifth run.  It sucks.  I’m not really making any gains.  Or at least it doesn’t feel like it.  My body just isn’t recovering in the way I’m used to.  When I’m in the woods and have to jump over a log or something, I have to really think about it, like my body has forgotten how to do this stuff, and I’m afraid of what will happen when I come down on the other side..  some sort of yardsale.   There are some theories about how this works.. about parts of the brain that get re-programmed for other things when you’re in treatment, and neurological damage from the chemo and all that..  cold comfort when you’re about to crash and burn because of a little root on the path.  I thought I was CURED!

The emotional part is even stranger.  I’m supposed to be feeling gung ho and upbeat, and happy to be alive.  Of course I AM feeling those things in an intellectual way.  But I’m also feeling tired, unmotivated.. depressed!  WTF! I guess this is the sort of pathetic phase of the process.  It’ll pass.  Complaining about it almost feels like being a rich person who complains about how money can’t make you happy.  “Buddy!  I believe you’re right, but I’d love the opportunity to prove it!”

On a brighter note!  Glen’s new bike will be in the New York Times style section tomorrow (http://www.nytimes.com/slideshow/2010/02/03/fashion/20100204-codes-slideshow_7.html).  It promises to be a photo that puts Fast Boy Cycles in a slightly different light than you may all be used to, but a great opportunity for me.  Many thanks in advance to David Coleman at the times for contacting me and including me in the story.

Finally:  Sending out good JuJu for M’s mom who is having a bone marrow transplant today.  Please keep her in your heart and mind.

0 Replies to “It has been nearly two months since my last confession.”

  1. love your words and confusion. beating the hell out of cancer takes a toil. in more ways than we anticipate. WTF. pie is here snoring. that is always comforting to me. thank for your kind words for my mamma. lemme know where i can find the residue of crude you are dealing with, and i will pay him a visit. lemme fight this one for you. 🙂 xo

  2. It’s been amazing to see your recovery, and your flickr photos of your work. Recovery from any sort of injury/illness is especially problematic when you are active based on prior memory of what you used to feel like, and what you used to be able to do. If we sat on the couch doing nothing, returning to that would be no big deal, but when you get out there and put the machine to work as a matter of routine it can be a mental challenge. The best advice I have ever been given is “do what you can do with what you got.”

    What you have at any given moment will grow the more you recover.

    Glad to see you are on the mend.

  3. maybe something to keep in mind – at the same time you were fighting cancer you were also getting closer to one of those weird male thresholds, too. You’re what? 35? 36? Your body just isn’t going to recover as quickly as it did, even just a year or two ago.

    So take it a bit easier on yourself. Your expectations can be higher than you may need to give. I hope you realize that you impress the hell out of many of us who follow this blog and your photostream. Both because of all the things you are able to do but also b/c of how you ARE.

    glad you’re all clear.

    -sv

  4. For me, the gains I made post-treatment were infinitesimal, particularly when compared to everything I had lost (or “lost,” as my therapist insists I frame it). I felt like I wasn’t making any headway, no matter how much I tried. Thing is, the gains I were making were so small and I was so close to it, I couldn’t have perspective. It was only when my husband would say “you couldn’t have done that three months ago” that I realized I really was getting better. Slowly, slowly…

    BTW, I am wicked jealous of your running ability! Neuropathy really did a number on me, but I did manage to run a 5K back in November. Haven’t been running much since, on account of my living on the tundra out here in Cheeseconsin. 😉

    Try to give yourself time and see if there’s someone you can talk to @ your cancer clinic if you find you need it. I had a LOT of shiz to process after my cancer nonsense.

  5. I don’t presume to know about the physical aftermath of cancer treatment nor the particulars of how and what you’re feeling, Ezra, but I do know something of depression and here’s what I have to say about that: trying to apply rational thought to how you *feel* not only has the potential to drive you stark raving mad, it has the potential to make you even more depressed. Emotions often defy logic and they aren’t a currency of communication. The rich man… the man whose survived cancer live another day… they have just as much right to be unhappy as anyone else. Sure it’s harder for other people to relate to. Sure it can be comforting to have the understanding of others. But really, that understanding means dick. Better I think (and I know what I think means dick too) to take comfort from the fact that this is the now. This is the sometimes. This isn’t the always and the forever. In essence, this too shall pass. Emotionally you may feel like a steaming pile of dog shit right now, but next week or next month or even tomorrow there is always the potential for that to change.

    Cheers.

  6. Also, on a practical note, if you’re not already taking them you may want to look into fish oil and vitamin D (specifically D3). There have been studies that show a correlation between deficiencies in Omega 3s/vitamin D and depression. Personally, along with talk therapy, I’ve found both helpful in dealing with my own depression.

  7. Are you seeing a therapist? I mean, don’t answer that, that’s personal. I’m just saying there’s no reason you shouldn’t be. I can’t imagine having to process the emotions this illness has put you through. I imagine your body put off dealing with the emotions to focus on the physical part, and now it’s trying to catch up?
    I dunno.
    I don’t think there’s any way you’re SUPPOSED to feel here, and if there was, I don’t think unadulterated joy would be it, anyway.

    I used to think therapists were for when you didn’t know what was nagging at you, or for people who …. well, I guess for people who were …. not me. I already had so many people I could talk to about anything, and while my emotions around a particular event where very strong, I didn’t think they were complex enough to require therapy. But one of my doctors insisted I try it. THANK GOD. I feel I’ve pretty much resolved the issue I first went in for, and now I keep going because I like it, because it keeps me in good tune, because I’m a spoiled gal who can afford it, basically.
    So from my vantage point, there ain’t no shame it in. I think everyone should be in therapy. Honestly.

  8. Reading this blog last year, I found it harrowing and very moving. It made me think a little bit more than I had about my own mortality, every time I read it I felt like every day in good health is a gift, and I’ve never met you. That you continue to share through the difficult times in your recovery, it’s brave and inspiring. Thank you again.

  9. my perception – and it’s only as an observer and someone who works for a non-profit that serves cancer patients, not as someone with personal history with that fucking disease – is that getting better is relative. Better than dead is one level of better, but better than sick has a much larger swing of values… Give yourself a break if you need to, and allow your body and mind the time they need to recover – to whatever new standard you may have to deal with.

    Sarah is right about the fish oil. I’m reading a lot lately about fish oil playing a role in keeping Parkinson’s and other diseases affecting the brain at bay, so it makes sense that it might also help with recovery from “chemo brain”.

    Glad to hear your last tests were clear. All the best.

  10. It sounds like working with someone on neuromuscular repatterning would help. Look up somoe one working in Laban movement analysis and/or Bartenieff Fundamentals. Laban/Bartenieff Institute of Movement Studies is a good start in NY. lims.org.

    From Keely, who you danced with via Zia back in the day. I was what, 15? Now i’m studying for my certification in Laban/Bartenieff and have been talking with acquaintances who recently went through cancer. From what I can tell, this work could be incredibly useful to get back your body sense.

  11. WOW! Man. Way to lay it out. Know that ya got a lot of love & support, both Physical and Spiritually, on all sides. Take that leap as you always have, knowing that it, we, us, you, they, will be there no matter what happens.
    Your brio for life shines through even as you question your daily approach to it. Boogie on Brotha’, BOOGIE ON!

  12. I’m a stranger, but want to say that I love reading your words and looking at the beautiful stuff you produce (photos/bikes). Sometimes when I’m depressed I’ll type in fastboy to soothe my restlessness. I hope the heaviness you are facing will fade without fail as time passes. Be honest and kind to yourself.

  13. Softly softly catchee monkey ( old African proverb ) and keep on running Ezra -an endorphin rush three to four times a week is the BEST therapy anyone could wish for…

    Keep up the good work – stay focused – continue to put in the mileage – and before you know it – come September 26th 2010 – you’ll be joining me for the 37th Berlin Marathon!

    You know you’ve got it in you – so how about it – I could certainly do with the company?

    VIVA xxx

  14. Hi Ezra,

    I’ve been wondering what you were up to since you stopped teaching…and then I found the beautiful bikes…and then I found this story. What a journey you’ve had in such a short time. I’m glad to hear you are on rebounding well.

    Have you come across Kris Carr of Crazy Sexy Cancer/Crazy Sexy Life? She’s had an extraordinary journey of healing and self-discovery herself, and you two might enjoy collaborating in some way.

    http://crazysexylife.com/

    And you know that if you ever want to do a bit of guest teaching or screen video or whatever your creative brain dreams up, you’ve always got my ear!

    Warmly,

    Christopher Pelham
    Director
    Dharma Road Productions, Inc.
    CRS (Center for Remembering & Sharing)

  15. told ya it was going to be hard…everyone expects you to be so freaking grateful and some days aren’t like that…like tony soprano says, “everyday’s a gift, but why does it have to be a pair of socks”. I’ve been out from type III cancer for 7 years now…the farther out i get the more i forget how it was fighting for my life. you are lucky to have this blog to remind you…i have two pictures taken with a shitty PC cam, and a lot of scars.

    watch out … for depression. it is a bitch and it seemed worse for me because i had gone though all of this…but i eventually got over it and i am grateful now…and at peace.

    good luck to you.

  16. The thing I found so hard to read about last year was your Dad’s passing in the middle of all your crazy illness – maybe that is part of your sadness, that sort of family loss lingers and changes all the time. And then losing the cancer which was also a part of you – not a very good part but something you were living with day to day. And then maybe you would be feeling depressed regardless of any of these things because sometimes depression just is for no rhyme or reason. It will pass, hopefully it already has 🙂 Keep well and best wishes to your family.

  17. Ezra, thanks for sharing. I just happened to check in here from the link in your flickr post on spinach salad.

    A couple of thoughts and some free advice (of course you know what that’s worth). First, be yourself and be okay with not being superman; no sense in living up to those expectations you have yourself and that wonderful wife to worry about. Second, you took some HUGE hits last year and are a survivor; remember a run is just a run. Third, give yourself time. The psychological and emotional toll are going to linger for a very long time indeed (in fact they never go away entirely, instead we form scar tissue). After all we learn to live as survivors profoundly changed by what has happened to us, that’s okay but it takes a while to get used to it. Fourth, you don’t know me but what I know about you says your a seriously tough dude, allez. Fifth, get a support group of survivors together, doesn’t need to be formal but some buddies who’ve been through something similar and will listen over a beer is very important.

    Your blog and sharing has been very inspiring to me. The courage and bravery you’ve demonstrated is incredible; thanks for that. Yme