Purple Haze

This is what my knitting looks like these days:

Knit 4, yarn over 1, knit two together, knit 23, Yarn Over 1, Knit 8  . . . oh wait
knit SEVEN!  Okay, unknit 1.  Now continue . . . knit 7, yarn over, slip slip knit, knit 8 . . .
Oh shit.  I’m knitting the wrong row it should be row 11 not 13!  Dammit!  (Proceeds to individually unknit the entire row of 131 stitches.)

Start over: knit 4, yarn over 1, knit two together, knit 17, slip slip knit,knit 16, slip slip knit, knot 13, yarn over, slip slip knit, knit 11, slip slip knit, yarn over, knit 1, yarn over,knit two together. . .  Balls!  I’m knitting row 13 and then my eyes slipped and went to row 11 again!  Holy crap!  (Proceeds to individually unknit the entire row of 11. )  Okay I’ll start from this place on row 14.  No, is this right?  No I don’t think this is right.  Count again.  Fuck it, let me unknit the entire row of 131 stitches.

Knit 4, yarn over 1, knit two together, knit 17 . . . eventually finishes row 13.  Oh for fuck’s sake!  I knitted the second half of the design before the first.  Unknit the fucking row  AGAIN!

This is what knitting, my chosen craft of meditation, has become of late.  One cluster fuck row after another.  If I had actually knitted each row correctly from the start, I’d have finished this lovely baby blanket already.  But I am determined to soldier on.  I feel as if the little tag I attach to the blanket should read “Made for you, with love, Scorchy and Methadone 5 mg.,t.i.d.”  Let me start from the beginning.

CaptureOxycodone wasn’t cutting it.  I’d take a pill and and look at the clock in anticipation of the next dose: “TWO HOURS?  I CAN’T WAIT THAT LONG!”  But I did and the same tired scene would play itself out again and again.  I visited my pain doc and asked for something long acting.  We talked about the pain, which I described as burning and constant.  He threw out some names, but said one alternative was the best choice, but it did have somewhat of a stigma attached to it: methadone.  For me, it would be the perfect long-acting opiate for my kind of pain.  If I felt as if I was in a fog and sleeping all day, I could bring the dose down to twice a day.  My pharmacy didn’t carry it, so I proceeded to walk down Broadway and one visit after another until I found someone who carried it.  Each visit played out like this:

Looks at me cautiously.
Pharmacy: “We don’t carry this.  We can order it, but it will take 7 to 10 days.”
Me:  “Okay, thank you. I will try elsewhere.”
Pharmacy: Hands back ‘script and looks at me like they’re memorizing me for the ensuing query by the police.
Me: “I’m in pain. I don’t do drugs for recreation.”

It’s nice when professional pharmacists judge you with a valid prescription.  Defeated–and sore from my seven block excursion–I called the doc.  He was able to locate a specialty pharmacy for me very close to my home and only a few hours later my experience with methadone began.

First there’s the inability to do anything more intellectually challenging than petting the cat.  I didn’t realize this, of course, until I tried to actually do something.   I gleefully took on a job to manage a large non-profit project.  I wanted so much to do this as it was a perfect match for my professional skills and I could help out this organization.  Much to my horror and surprise, I couldn’t do it.  It turns out that every time I would face this keyboard I wrote about twenty words, stopped and allowed my head to droop.  I wrote the perfect mission statement.  The statement was loved and approved by all, until the dragon set it on fire and told me that it needs more work.  “Now look here,” I said, finger slowly moving up and down, clearly pointing at something in the air.

Okay, that was a bit startling.  I don’t recall ever waking up with a foot in reality and a foot in dream sleep.  Nothing to fear.  Just The Little Methadone Dinner Theater.   Some hot tea and a small breakfast jar me into reality.   I try to do some simple housekeeping, read some, and poke people on Facebook.  But I’m too tired to write or do anything that involves detail and conversation.  Hell, this blog post is killing me.

But the one thing I do not have in excruciating abundance is pain.  It is now uncommon for me to reach for Oxycodone for breakthrough pain.  But it is not the same as not having any pain at all.    I mean, dreaming is really intense–to the point that I wake up reaching for invisible toast and orange juice.  I am easily overwhelmed by intellectual pursuits–and I also include simple tasks such as paying bills, answering emails, and the like.  I need help to full out forms and writing is a challenge.  When I am hit with  everything at once I get anxious and upset.  Another little side effect from taking opiates is a spontaneous twitch: hands, fingers, legs, arms, toes, shoulders. Dayum.

And people take this shit to get high?  Fugheddaboudit, you crazed morons!

After many months of waiting, I begin radiation to L4 on Monday, July 29.  After ten treatments, it is expected that the tumor will be killed and the pain eliminated.  The site will have to be monitored for some time for fracture or collapse. But right now it’s nice to see something actually happening.  I  look forward to going back to work by Labor Day.

You know, it is impossible to wrap your head around metastatic breast cancer.  I told someone today that instead you deal with small sections of it at a time.   And that’s what it all boils down to: small sections of time.  It’s impossible to deal with all of it.  It’s like opening Pandora’s box–seeing all of that crazy shit at one time will drive you mad.  It wasn’t until this very moment that I looked to my side and realized that this treatment isn’t the end.  It’s just one step to whenever I decide that there have been enough steps.  That’s some scary shit.  Terrifying.

CaptureDon’t get me wrong.  I’m happier than a pig in shit about tomorrow!  I can’t wait.  Hell, I grew up and spent most of my life in New Jersey so I know something about Super Fund sites and glowing in the dark.  I can take it.  And with good fortune at my back, I will be back at work by Labor Day.  And laboring for some years to come.

Secure your tin hats, people.  I’m going in.

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40 Responses to Purple Haze

  1. keithw says:

    Thinking about you today and wondering how you are doing. Waiting for the storm here. Hope you are as okay as you can be.

  2. Its been a while… hoping all is going to plan. Take care.

  3. Jude says:

    Hey Scorchy, How are you today? Has the radiation helped the pain? Oh, I hope so. This post was tremendously moving. And frightening. (“It’s just one step to whenever I decide that there have been enough steps. That’s some scary shit. Terrifying.”) I’m so fucking sorry that you have to know that, but so grateful to you for writing it.
    Meg and I put up a new song, “One last thought” which I want to share with you, but I have no idea if you can stand to listen, as much pain as you are in. Here it is, if you’re up to it: http://tinytop.bandcamp.com/track/one-last-thought

  4. bethgainer says:

    Scorchy, I’m glad the methadone is working, although the side effects sound horrible. The pharmacist who looked at you suspiciously is an asshole. I wish only the best for you, and just take things one thing at a time, one section at a time. By the way, I can’t knit a stitch, so when you were describing your errors in knitting, I was, like, where’s the mistake?

  5. Renn says:

    Scorchy, this blog made me smile: because of the crazy knitting, because of the Pharmacy diss, because of the methadone dinner theatre, because of your amazing ability to put into words the craziness that is MBC. Here’s to zapping and napping and knitting!

  6. Scorchy, I hope your experience with radiation will be like mine, that the pain spike from radiation won’t last long and that you will feel an improvement before they’ve even finished zapping you.

  7. Irene says:

    Love ya Sis.
    Just wanted you to know that I do read your Blog all the time. I am thinking of you always and with you, after all you are my baby Sis. Looking forward to spending sister time with you. xoxooxxo

  8. Cynthia White says:

    Good post



  9. russliz says:

    Hello, Scorchy. I had just become a fan of your blog before a descent into general life chaos took me away from the blogosphere for a time. I was very moved to (belatedly) read your previous post, and am very glad to see that despite the methadone haze you are still able to combine the word “clusterfuck” with a description of knitting – the scorch still shines brightly!!! I hope that that the radiation blasts the bejeesus out of that tumour and brings you great relief, that you’re back at work soon and that blogging helps somewhat in sorting through that Pandora’s box. Sending warmest wishes, Liz.

    • Scorchy says:

      hahahaha Liz, your note gave me a good 5:00 am chuckle. God forbid I write a knitting manual: “Knitting Uncensored.”

      Yes, I hope this tumor is zapped into a hundred bazillion micro pieces and dies a thousand deaths a piece. Of course, each piece must pass through the “neener! neener! neener!” filter just before it dies. Almost 24 hours later it hurts like a mofo, but I hope that resolves itself really soon.

      🙂 xoxo

  10. Lori says:

    Fuck cancer. I am SO profoundly sick of the myriad of ways it fuck with our lives, most especially how it steals from us. I hope today is the beginning of a quick road to pain-free. With love and healing wishes, Lori

  11. Thanks GOODNESS you are going in today for radiation. Radiate that sucker away so you can get off the crazy pain meds. One step at a time, and here’s to labouring for a damn long time (and for knitting. I like the results of knitting even if I’m not a big fan of the activity itself.)

    Good luck, Scorchy. ~Catherine

  12. Susan says:

    Scorchy, it’s disgusting the way that the pharmacists have talked to you about the methadone. It’s so ridiculous. I was prescribed it by a pain specialist when I had my reconstruction and I had broken a hip as well as a a hairline fracture on my foot. and got some of the same things you heard about them not carrying “that drug”. The fact that I was on a walker made no difference. Thank goodness I found a hospital pharmacy that carried the drug. I also know what you mean about wondering why addicts like it. I think it’s given in liquid form to help addicts get off drugs, so these pharmacists make no sense to me. The way they looked and talked to me made me feel like I was doing something awful. WTF? I was humiliated enough from having to use a walker.
    I hope the radiation works and at least helps alleviate some of this horrible pain. You need some real time without this unbearable pain. I’m sorry the meds are making you so fuzzy especially because you are in such horrible pain. I am just going to hope for the radiation to work also hope it doesn’t cause more problems. Love and hugs – Susan

    • Scorchy says:

      People are stupid.

      Okay, I get a pharmacist thinking, “Wow, that’s unusual.” Because it is, but then treating us with attitude?

      I hope the radiation works too. When I finished my back pain rose significantly, And I’m not feeling so great five hours later. Good thing I see the doc tomorrow.

      Scary shit.

  13. dear scorch,

    maybe right now your L4 is getting zapped and you are on your way to no more pain. please, please LET IT HAPPEN. no more knitting asunder, no more purple haze.

    what you wrote about dealing with metastatic breast cancer, not being able to wrap your head around it, and taking it in small sections at a time is right on. I hate, hate what you have had to deal with getting to this day – what a bucket of fuckedness it’s been. but you are one helluva writer, and I thank you for the perspective you’ve given to your story, one that will undoubtedly help and inspire legions of others.

    love you, xoxo


    • Scorchy says:

      Thank you, Karen. I hope my documentation of this fuckedness helps someone out there.

      This shit better keep it’s grubby hands off my knitting.

      I love robots, and this first day of x-rays and such felt very robotic. Indeed, when the radiation actually started I fully expected something to chiome in :DANGER, WILL ROBINSON, DANGER,SANGER.

  14. Carol Shaw says:

    Thinking of you today. Hope they blast the crap out of you and you’re pain free soon.

  15. Katie says:

    You may be well on your way to becoming a junkie, but I’m glad the pain is under control. The affect on mental capacity is why I’ve never understood why people use drugs recreationally.

    • Scorchy says:

      As creepy as the side effects are, this is a super low dose and walking away from it should not be filled with drama. Someone wants to smoke pot–go for it! But this other crap? No way, man! No way!!

  16. Caroline says:

    My knitting is now knit the entire row, purl the next. Or if I am feeling daring I knit two, purl one, knit two, purl one…. My brain doesn’t handle much more. Arthritis makes it a lot less fun. Good luck with your radiation.

  17. Knot Telling says:

    Oh, and by the way – a friend gave me a great tip for retro-knitting. You thread yarn of a contrasting color through the last good row, then rip out with wild abandon to that point. Then you can just slip the stitches from the thread on to a needle and you’re good to go.

    I’ve tried it – it works beautifully!

  18. Knot Telling says:

    Scorchy, my friend, you do a better job of conveying the experience of metastatic breast cancer than anyone I have ever read.
    Love you, girl.

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