A lost week

 

I guess you wouldn’t really know it from this photo, but my pain level spiked early this last week in a pretty significant way.

I took some photos of my new friend Dane, an old friend of MySam, on Sunday.  When I finally got around to posting one on Friday, I realized that I had no idea where the week had gone.  I was super excited about the photos but hadn’t managed to find the time to post a single one..  Yet, couldn’t remember for the life of me what had been keeping me so busy!  I hadn’t worked on the UTA..  Hadn’t worked on T-mac’s cargo bike.   I HAD spent a good deal of time flat on my back, though, in a listless funk dealing with a new level of chronic pain.  Somehow that had really passed the time!

Sciatic pain is pretty old news at this point.  It’s usually there to some degree.  If I forget to take gabapentin, I usually pay for it.  If I sit too much I get uncomfortable.  Etc.

This is something different.  I’ve mentioned this thing that I call cancer pain before.

When I first went to the doctor 4 and a half years ago, I went because I was experiencing fairly constant discomfort.  The discomfort felt like constipation, but wasn’t.  For some months leading up to that first appointment with a doc I would try to go to the bathroom about 8 times a morning with no particular success, and no relief from the discomfort.  What I realized after finally having someone take a look and discover that, yes, as I had feared, I did have cancer, was that what I was feeling was PAIN, not pressure – not constipation.  I DID have a gut sense (ha ha) that I had cancer back then.  I can’t explain it.  I just knew.  It took a couple of trips to the doc to have him take that fear seriously enough to even look!  It was that improbable that someone my age and in my state of health would be sick.

After a year of pretty brutal treatment – chemo/radiation, surgery, another 6 months of adjuvant chemo – I was declared cured and was sent on my way.  They were going to “watch me like a hawk.”

Six months after treatment ended, I started to experience that same discomfort.  At this point I still had an asshole.  They had worked hard to preserve my continence (in hindsight, probably a terrible decision).  I told the doc about this discomfort, and he explained that it was perfectly normal for someone who had been through what I had to be anxious about recurrence.  That this was in my head.  When the pain persisted, and I told him emphatically that it was in my ASS not my head, he sent me over to the GI doc, who did a scope on the spot and found nothing.  Six months later, almost exactly two years from the original diagnosis, during a routine colonoscopy the same GI doc found a tumor.   The tumor was fairly large, and clearly fairly sneaky.  It was big enough, that there was a pretty good chance it had been there 6 months earlier, and they simply hadn’t seen it.

SO. Immediately there was more surgery.  This time they took everything.  Asshole and the bottom 6 inches or so of my colon, which they re-routed to my stomach.

During this surgery, they discovered enough lymph node involvement to stage the cancer at IIIC and to need to follow up with another 6 months of chemotherapy.   During that stretch of recovery from surgery and chemotherapy, I was in considerable enough pain to be on quite heavy doses of narcotics.  Getting off them when the chemo was done was more than a small chore.

This time they really did watch me like a hawk.  PETCT scans every three months.  Colonoscopies every three months.   A full year went by with no evidence of any cancer.  This was a good sign.  Besides the sciatic pain (and some fairly persistent postpartum depression) I had no complaints.

In October of this last year, though, I began to feel that SAME fucking pain again.  The same pain that had sent me to the doc 4 and a half years earlier.  This time, I convinced MYSELF that it was in my head.  My new doc (I fired the old one for not letting me ride bikes..  obviously it wasn’t that simple, but that’s a good story), had switched me to PETCTs every 6 months because I seemed to be doing so well.  I convinced myself that this was just anxiety over such a long chunk of time passing without the reassurance that there weren’t any tumors.  After all, I was feeling pain in tissue that wasn’t even there!  I was feeling the same ASSHOLE pain that I had felt originally, and I no longer had an asshole!  Figure that one out.

I requested an appointment with the doc, and reported this pain.  He ordered the PETCT a little early, and sure enough there was metastasis.   So three out of three.  Three times now I have had the same pain leading up to a diagnosis first of stage II then stage IIIC and finally stage IV cancer.   Cancer pain.  That’s what I call it, and that’s what it seems to be.

Early this last week it got quite bad.  I have also been experiencing some pain around the stoma, and occasionally some pain in the liver (?).  Lately I’m wondering if it’s possible that when they moved the colon to my stomach wall, they moved nerves with it.  If perhaps the tumor in the mesentery is a recurrence of that original tumor, just moved with the colon to a new place..  and if the cancer pain that I’m feeling where my asshole should be is just those same nerves firing even though they’re in a new place.  Firing because there is a tumor there.  That I’m FEELING it in the place that the nerves used to be.   And that the pain I’m feeling around the stoma is pain that I’m feeling locally through nerves that are right where they’re supposed to be, caused by that same tumor.   I’ll see the doc on Tuesday and I’ll float this idea.

Experiencing withdrawal from narcotics that first time around made me fairly resistant over the intervening year and a half to ever use them (I took 30mg of codeine the day that they removed my port, and nothing else during that entire span).  I enjoy narcotics.  When I actually feel the high of narcotics, it’s a high that I find quite wonderful.   However, despite a complete lack of judgement about other peoples’ drug use, I’ve always been a bit of a puritan myself.

For the last couple of months I have managed to mostly ignore the pain during the day and take a small amount of narcotic in the evening/night to make sure that it doesn’t effect my sleep.  This week that changed.  I spent several days in bed.. in pain..  unable to do any work.  I fell into a bit of a hole.  Chronic pain is different than acute pain.  It can consume you.  Like depression, or nausea, it can become the only thing.

On Thursday, after a long conversation with Special Ed, I decided to try to get ahead of the pain.  I took rather more than I felt willing to, and went to gamble some one pocket with John Smith.  (after a several week slump, I pulled myself together and beat him 6 games to 3! SOMETHING seemed to be working).   So.  I’m relenting a little.  I’m realizing that the pain I’m experiencing is serious enough that I DO need to stay ahead of it.  This is a lot to accept in a situation where there’s a very good chance, if not a certainty, that the pain is going to continue to get worse.  I am not dealing with post surgical pain that is likely to go away as I heal.  I am dealing with pain caused by the progression of terminal illness.

Intellectually, I don’t mind the idea of dieing with a considerable addiction.  I understand that for what remains of my life, I’m of much more use to the people around me if I am not in that deep hole of chronic pain.  I just need to get the inner puritan to relax a little.  Perhaps it is just accepting that this is happening that is hard.  Having to deal with increasing physical pain and accept the compromises that entails, somehow parallels the emotional/spiritual/intellectual struggle of accepting the reality that I am dieing.

On that cheery note, I am going to head out the shop and work on the UTA so that there’s an outside chance I’ll get to RIDE the damn thing before I feel to unwell to.

(I feel that I should add, I’m doing very well now that it is under control.  On thursday I beat up on my good friend John Smith – he gives me considerable weight- and took his money (or maybe just took some of MY money back), made myself a nice dinner of duck and shishito peppers (?), had a good night of sleep, and have been staying ahead of the pain since.  When you ARE ahead of the pain you don’t need to take as much medication to stay there as you do to GET ahead, if you see what I mean.  I have been mostly NOT in bed.  I have been in the shop and working happily.  You should not worry about me.  My state of mind is good.  Cheerful.  Productive.  I’ve just had to make a bit of an adjustment.)

(I feel I should also say that speed plays a roll, and we’ll talk about that next time.)

42 Replies to “A lost week”

  1. Keep ahead of it love and keep working and playing. You are adapting. May you stay in that cheerful state of mind as much as possible.

  2. Lots of good things from over here, as always, Ezra. Glad that you’ve decided to stay ahead of the pain. I can’t really see any point of it dragging you through the day and night, rendering you unable to do anything you want to.

  3. Keep on keeping on, I guess? It always seems like you’re the most together anyone could be in your situation, even though I know that can’t be true. Glad that you can keep ahead of the pain and in the world; long long long may it continue.

  4. Hey, you get to get high legally, and not feel guilty about it! how cool is that!

    Keep up the good spirit, Ezra. And thank you, thank you for sharing your amazing journey with us strangers. I am eternally touched by you and yours.

  5. I’m sorry… there was a photo, and then I missed what you were saying… 😉
    I’m so glad you brought this up because this is one thing I have honestly struggled to understand over the years. I don’t understand where you put your anger. I remember very well reading about your 1st recurrence because it sounded eerily familiar to the experience a good friend of mine had. Doctor meets an obscenely healthy young person and says – my god – I can’t believe you have this usually-slow-growing cancer at your tender age. Unheard of. We should keep an eye on you because – even though we don’t understand it enough to classify it – it is perhaps self-evident that you have an aggressive form of this disease. Newly-cured young person goes home, then returns saying he feels just like he did when he had to fight for months just to get tested for the cancer he Did In Fact Turn Out To Have and is still (!) met with a head pat – dear boy tsk tsk this is all in your head. Go home. If I’m remembering the right journal entry from you – I think you finally convinced the GI doc to run the test and they sent you to a tiny bathroom to give yourself an enema or two – awesome – and then proceeded to do a fucking colonoscopy on you without any fucking sedative. I remember my blood boiling at the time just reading that. Boiling. So to then have that doc come back 6 months later and say – gee apparently I missed this suddenly huge tumor in that colonoscopy I rushed you through….
    I’m aware this is all water under the bridge and anger earns you nothing at this point – that letting go of anger is in fact the Healthiest thing you could possibly do. I just wanted to say that if you’ve somehow made your peace with this – I MARVEL at it. I am stunned by and in awe of you – To the extend that I sometimes don’t understand you. It’s like I’m reading everything you’re saying and nodding along and then all of a sudden you drop into Cantonese and I’m like – wait I didn’t understand that part at all. I Marvel at these choices you’ve made and the Grace with which you talk about them. I’m not there yet. I genuinely appreciate the re-cap and I appreciate you taking the time to talk about these things. I’m trying to slowly learn your language:) I really am. And for God sakes, stay ahead of that pain. Tell your inner Puritan to take it down a notch.
    Big Love, Ezra. Thanks.

  6. Ez… I’m not accepting the reality that you’re dieing, I can’t… I would explain you all the things that are in my mind, but i can’t because I feel angry and strange (And I don’t have the words in English :O)… I still, as everyday do, thinking of you, sending all my positive energy. Abrazos enormes.

  7. Thanks for the update Ezra. I know there are lots of us wondering how you’re doing. I was just in Manhattan today (I’m from Georgia) and was thinking about you living so close by. Every time I saw someone on a bike, I smiled. 🙂

  8. we are all in fact dying, dying every minute of every day– every single one of us, and the way you are accepting it is teaching me so much on how to accept my own death…. thank you.

  9. The last coherent thing my 32 year old, passive, shy, goody two shoes sister said to me before she died was.”If I had a gun I would shoot that doctor”, referring to the OBGYN who misdiagnosed her 8(!) cm breast cancer tumor at the age of 28…He told her her cholesterol was high!!
    I so wish she could have let go of her anger as you seem to have, Ezra. If there is any consolation to any of this, when she died she had a big toothy smile on her face which leads me to believe there is something glorious over there.
    However, I still feel the need to say to you what I always said to her…”please don’t die” I know its selfish… I just can’t imagine not having you here teaching, teaching, teaching us how to live with Grace…even if you’re teaching us how to die.
    Much Love, Jill

  10. HOLA EZRA GRACIAS POR COMPARtIR TU SITUACION. ESPERO Q TODO. SEGUIRA BIEN EN TU TRATAMIENTO,,,ESTAS EN MIS ORACIONES TE. QUIERO Y ADMIRO POR TU FORTALEZA,SI ME PUEDES. DAR TU DIRECCION YO PUEDO IR. A. VICITARTE,UN ABRAZO MY CAPITAN. DANIEL.!!!!!!!!.

  11. …don’t read the caption until you’ve studied the image.

    Now, back to work on the UTA! You have way more than an outside chance of riding that thing.

  12. That is some lucid prose for someone occasionally fucked up on pain & pain meds. Don’t question your decision to feel better and be productive. Whatever decision you make is the right one. Keep building that bike. I can’t wait to see what you come up with. To mangle the puritain analogy and mix metaphors, that bike is gonna be a city on a hill. A shining example of craftsmanship and moral righteousness. Peace & Love to you and your family.

  13. I have to say it. SHIT!

    My thoughts are with you, sending love, marvelling at your vivid brilliance in the face of this thing, and taking inspiration for any litty bitty difficulty that I may come across, if I think about you and your confrontation with this shite, I am humbled.

  14. Hi Ezra! I really admire your story. The boldness and courage you have to take reality heads on, no fear, no regrets – it seems. It’s funny to think my own pains (in my day to day) in mental and emotional ways that in all actuality are not worthy unless i confront, combat, and be bold in the face of them. Accepting and moving forward with them with control. This is what I see from your story and I’m very happy to know you, indirectly. To know your beauty.

    Sincerely,

    D.

    P.s. Hil invited me and my sister, Megan, to your home for Thanksgiving. Loved the food! And I’m sure the duck was excellent! You’re an amazing cook.

  15. I am moved and touched by your fortitude and humor. Having treated oncology patients for well over decade I have wept but once…that was after reading your blog from the beginning. I do not know if you realize the beautiful effect of your writing. It is heart wrenching but so generous and hopeful. Thank you. You have forever inspired me.

  16. Sending love from…flashback to 1990/91, the girl behind the marble counter at the General Store who remembers you as a beautiful dancer.

  17. Hi Ezra.
    I’m yet another of your cyberstalker admirers. Just checked into your blog after a few months’ hiatus… and now I’m crying. I am so sorry.
    I love the metaphor of your pas de deux with the handsome madman. If you grow weary in the dance, take your eyes off his tears and the knife at your throat and look around you for an instant. There’s a huge crowd out here, admiring the grace, and elegance, and – how can it be so? – even joie de vivre, in your performance. We’re looking for pointers, hoping that when that inevitable moment comes, and we feel a tap on the shoulder and turn to see the madman beckoning to us, we will be able to carry ourselves half well as you do. I don’t know if that brings you any comfort. I hope it does.
    Namaste.

  18. Ezra — you aren’t dying….you are living. Living with dignity and class, and so much so that reading your blog brings tears to my eyes. You are so frank about your physio- and psychological states that it inspires us all to be as in touch with ourselves as you are. If I had nothing to rely on other than your Flickr photos, I’d say that your life is carrying on as it always has: building works of art and consuming delicious food and booze. Keep it up, and know what you’re in our thoughts.

    -Ben

  19. Pain medication was invented, discovered and refined for people like you. While i somewhat understand your former reluctance, just do it. Gargle the shit down with some of that donated Bourbon, put some of your favorite motivational music on and get in that workshop and do some light headed, perhaps even slightly dizzy creating. Smile enjoy and make something beautiful. Just do it.

  20. Once again your words are teaching me to remember the beauty and joy in my own life. You are wise and you have made my life better. I thank you for sharing yourself so freely.

  21. Chalk on the cue. Grease on the bearings. Tigerbalm on the muscles. Music in the earholes. Drugs on the pain. Warmth, lube, rest and groove.

    Whatever works, whatever it takes.

  22. Ezra! This is the first time I ever wrote, after having followed your way through life, food and bikes for some years. I once heard that there’s a Chinese curse: “May you live in interesting times!” Don’t know if it’s really authentic ancient Chinese Hoodoo, but it seems to have hit you. You truly are a constant inspiration on all levels. Just wanted you to know.
    You’re in my prayers. Martin from Berlin

  23. First time caller, long time listener… What can I say that hasn’t been said? Thanks for sharing, for inspiring, for being unique and apparently very awesome. What a great misfortune that I don’t know you in real life, but just through this one way mirror of sorts. Thinking of you a lot these days, as I’m sure countless others are as well. I hope that you can feel the love from all directions, across all the miles. Live. Love. Enjoy. Find peace. Xo

  24. Sciatic Pain……I will assume you know how to lessen it but on the off chance you don’t, let me share what I have discovered about it. As much as I would like to say that everyone know this, that it is obvious, you would be surprised how many in fact don’t……

    1st…..morphine and other narcotics don’t work on the pain…Naproxen does, but i understand you have something you are taking for it already but for myself, Naproxen works wonders. It relaxes muscles. I get the prescription strength, the highest dose available at least here in Canada. Take 2 to start and 2 more during the day.

    Most importantly, lying down on a bed, couch etc; only make it last longer and become worse.
    One has to lay down on the floor with their legs up and over a chair, as this forces the lower back flat on to the floor. Otherwise, the spot in your back, just above your waist is usually lifted away from it and never gets the support it needs.

    I have just plonked myself on the floor in front of the TV when like this with the channel clicker in my hands to pass the time but at its worst I spent close to a week on the floor once but I finally got rid of it and it hasn’t come back since.
    But I had it for 7 weeks once. The first 3 weeks i did not listen to a friend who told me to get down on the floor in the same way with my legs up on a chair and it got worse. I was popping 5mg morphines until they were done and i don’t think they did anything but i was desperate to try anything.
    I could not sleep for more than10 seconds at a time. Id find a position fall asleep and 10 seconds later i would wake up again in excruciating pain. Then I would find another position and repeat this all the way though the night. The first 3 weeks I don’t think I slept at all….the very day I finally gave in and somehow went crawling in tears to my doctor and was given Naproxen, was the moment it finally turned around but I had done so much more damage ignoring it without proper treatment for the first 3 weeks it still took me another 2-3 days before the Naproxen was working enough that I noticed a bit of change and then I started to sleep again……and then finally the process sped up but without the two, Naproxen to bring down the inflammation and lying on the floor to take all pressure off of the muscles in my lower back, I am not sure that one on its own would have worked as well or as quickly (4 weeks was quick if you knew the level of pain I was in)……………had i done both from the first day I believe it would have been a 7-10 day recuperation at most.
    So straight down on the floor with your legs over a chair so you are in a straight sort of Z position…….making sure your lower back is directly on the floor being supported rather than lifted off it which is the natural position it will take if you are just lying down in bed without your legs being up and over a chair.

    Dont know if this will help you but it might help someone else with this extreme pain that sciatica produces.

  25. I completely agree with the drugs as well. If you need them, you take them and it doesn’t sound as if the medical doctors need to be concerned for you don’t come across as someone that will take them blindly.
    That said, with narcotics, you don’t want to abuse them if you don’t have to for you do want to be sure that they work well when you do need them and since a tolerance for them can be built up very quickly its best not to waste them if they aren’t needed but if they are, than hell, take them…..theres no reason why today with all of our advances, you should be in any pain Ezra!

    My heart goes out to you. I have noticed that its been over a week since you last posted so my hope for you is that you are taking the meds if you are in pain and have one hell of a big smile on your face!!!!

  26. Hi Ezra:

    I can’t remember if I have written to you before, perhaps a long time ago when you first started this blog. I check in every now and then to see how and what you are doing. I am indeed saddened by the news that you are dying. But, at the same time, I am happy to see that you are not letting that get in the way of your living!
    You’ll be in my thoughts, as you have been for a few years, but even more so now.
    You are a bright spot for a gloomy environment. I only wish I had half of your will and zest for life.

  27. Dear Ezra,
    You don’t know me and I do not know you, but by accident I tumbled into your blog a few months ago via one of your beautiful cooking videos.
    And in case this was no “accident” but somehow magic, I send you a scientific abstract of a new method to press and “spray” chemotherapy sustances directly into the abdominal cavity against peritoneal metastases from cancer within the abdomen. I do not know whether this is practicable for you, but I saw a respectable report on German TV the other night, when an elder lady which had been considered as “incurable” because of terminal cancer had insisted to be treated with this method and the professor had finally given his consent. She is still alive and well: http://www.ndr.de/fernsehen/sendungen/visite/media/visite7847.html
    Sorry that I cannot translate this for you, the method is being shown as much less harmful as usual chemotherapy through the veins and rather effective, it also can be repeated. The name of the new method is PIPAC (Pressurized Intra Peritoneal Aerosol Chemotherapie) and the name of the professor is:

    Prof. Dr. Marc Andre Reymond
    Onkologische Chirurgie
    Marienhospital Herne
    Klinikum der Ruhr-Universität Bochum
    Hölkeskampring 40
    44625 Herne Germany
    Tel. +49 (0) 2323 49 90
    Fax +49 (0) 2323) 49 93 92

    This is the abstract: http://download.springer.com/static/pdf/571/art%253A10.1245%252Fs10434-012-2840-2.pdf?auth66=1363446570_1bc5593938e6a3a952f8243c898c0f34&ext=.pdf

    I leave it up to you to check this out and in case it is all useless, forget it and forgive me.

    Best wishes and go on living! Your are a beautiful person.
    Paula

  28. I am so familiar with these pains you are talking about. Tumor pain is the worst. My belief is that the tumor displaces everything else and that is what causes the pain, it must press on the nerves. When they found mine it was the size of a grapefruit, taking up the majority of my abdomen and making me down ibuprofen like jelly beans until I was put on something better. It pressed on my nerves and made my thighs ache so I started taking gabapentin. And when they installed my Stoma that thing hurts too, I think the pressure from sitting or standing makes the skin it is sewn to sting because they keep telling me there is no feeling in it. Deep down I knew it was something deadly like cancer and I waited to go to the doctor until it was too late. Thanks for posting your story, it helps me to see what you went through as my years leading up to the diagnosis of cancer was similar ( the feelings of pain and no relief, etc.) I’m not looking forward to withering away and I’m a pretty big wimp about pain but I’m trying to stay active too despite being worn down by chemo and trying to navigate the exciting world of colostomies. Next step is to look into this irrigation thing. Keep up the good fight and the exciting travels! DD