Seeing Stars

There’s a popular saying among knitters: “I knit so I don’t kill people.”  Over the past two months I’ve  been saying “I knit so I don’t kill myself.”

This paincation has been brutal–thus my prolonged absence from the blogosphere.  When that nerve block failed to work in the beginning of May and my back pain began to increase, I knew that something wasn’t right.  I found out, ultimately, that the tumor in L4 had progressed in size.  The MRI revealed it to look like fungus growing on a tree stump.  And a far cry from what it looked like in August of 2012 when I first learned that the cancer had metastasized.  And the pain from this cluster fuck of cancer mishegoss?  Sixty one days of hell.  And counting.

The Tamoxifen stopped working and this lytic lesion was the bell weather.  A PET/CT confirmed progression and I had to take a new approach.  But you know how it goes, you start a new regime and you have to wait to see if it’s actually working.  I got my Lupron shot and started Letrozole in May.  In the process of waiting to see if this is working, the tumor is going to continue to grow.  It’s eating me alive.

The nerve ablation that I had just under two weeks ago was successful in that I no longer feel like someone has hit my shins with a bat, but the pain is still in my lower back from the lesion itself.  So the story is far from over.  The next chapter will include targeted radiation to the tumor to finally kill the fucker.  I don’t have a choice as this thing has the potential to cause permanent nerve damage, if it hasn’t already.  In addition to killing the tumor it should also eliminate the pain.

Even though there was still localized bone pain,  I was able to return to the office this Monday.  Wheeee!  I went home about two hours early, but I was still happy.  After all, it was my first day back in two months, I could cut myself a little slack.  And I loved being back in the office.

I got hugs from my wonderful and amazing staff and enjoyed making contact with colleagues.  Tuesday I was adequate, but as the day progressed I began to feel wonky.  I had a follow up with my pain specialist and told him about my increasing discomfort.  We both knew that this was from the lesion itself and it was time to nudge the radiation oncologist to get things moving.  My doc gave me a new prescription for Oxycodone and I hobbled around the corner to the office of the radiation oncologist.  The office receptionist was very kind and took my message and even followed my instructions to underline pain five times and end the sentence with five exclamation points.  He hand delivered it to the doc.

I hailed a taxi on 5th Avenue and couldn’t wait to get home and grab something for pain.   When I arrived home I added 5mg to the 10mg I was already taking (from a prescription last October–I had one pill left) and barely nothing.   I ultimately fell asleep, but woke often to find myself moaning audibly.  It was an awful night; all compounded by an urgent call to the pain service that was never returned.  Fuckers.  (My doc wasn’t on call.)

Among other things my doc told me to double my dose of Oxycodone to 20 mg until we meet again in two days.   So far it hasn’t worked very well at all, but I have learned two things as a result: 1) When it comes to Oxycodone, I can’t knit under the influence of anything over 10 mg  and 2) I don’t need fireworks this Independence Day because I’m already seeing stars.


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67 Responses to Seeing Stars

  1. OyiaBrown says:

    Reblogged this on Oyia Brown.

  2. Tracy says:

    Thinking of you from here in the UK Scorchy, so annoyed about the pain, the Drs and the cancer >:-/

  3. Catherine says:

    Oh Boszmeg, Scorchy. I’m so sorry for this boszmegging pain.

  4. Victoria says:

    Damn! I’m so sorry you are going through this. Healing vibes/prayers/good thoughts coming at you from Versailles.

  5. Oh shit, Scorchy! It is a disgrace that you are still in this much pain. I think the radiation will help, but it takes time — you may get a pain spike first. So you really, really, really need pain medication that works…and enough that you can adjust it as pain goes up and down.

    With my combo of dilaudid (regular and long-acting), lyrica and naprosyn, I’m attacking the pain from all sides. Sure, I was loopy when I first went on the dilaudid, but it only lasted a week or two. You should have seen me when i was on the pain pump! Now, I can drive on the stuff. I can’t imagine how I would function without it. I pay the price if I forget a dose.

    You are always in my thoughts and in my prayers. No one should suffer like this. I hope making a stink will get those doctors on the ball. Enough is enough!

  6. Jo Ann Feeler says:

    I remember the days when I wanted to yell “JUST FUCKING FIND A CURE DAMMIT” and I remember the days when it hurt too much to even talk. I hope you are having a “YELL” day. I am. And if you aren’t, I will yell loud enough for both of us.

  7. The Accidental Amazon says:

    Scorch, this entire subject touches on so many of my personal and professional pet peeves. No one, NO ONE, should have to suffer this kind of protracted, intractable pain while waiting for the @#$%&*@ healthcare system to respond adequately. In my job as a PT, I am appalled at how cavalier and/or slow clinicians often are to act to relieve a patient’s pain. And how inadequate and unimaginative their recommendations usually are. And this is 21st century medicine??? Why wasn’t radiation recommended for you ages ago?? WTF? From idiot doctors who don’t seem to know how to use topical/local anaesthetic before they plunge needles into us for biopsies, etc., to those who unconsciously label all of us with chronic pain as ‘drug seekers,’ to the damn fools who don’t refer their patients to the specialists who could maybe accurately diagnose the cause of the pain, it all makes me want to shriek from the rooftops with frustration. Hugs, my friend, gentle hugs.

    • Scorchy says:

      I’m exhausted from it all. I have to coordinate all of my care, manage medications, appointments, treatments, And I have to do it all alone. I’m sick of it. Two months in pain and most of it waiting for one test or one appointment. Wasted fucking time.

  8. Renn says:

    I really hope they can find you an Rx that works better on your pain. So sorry you have to go through this, Scorchy! ;-(

  9. nancyspoint says:

    I hate this disease. I hate that you are suffering. I hope words do matter. I hope knowing others care helps a little bit. And I hope you had that meeting with your doc and got more relief. Hugs to you my friend.

  10. Lopsided says:

    I just recently stumbled on your blog, somewhere, hell I couldn’t remember where if I had to, but I love it, I’m pulling for you to get over this huge hump, I don’t know you but I gotta say, STOP being stoic, this shit hurts like hell and damn it no one deserves to have any pain! Make sure your doc knows how much you hurt and make ’em give you MORE than enough to help. Its not fun being in a drug induced fog but I’d rather be a zombie for a bit than wake up crying from pain. NO FUCKING FAIR. Fucking stupid mothafucking cancer. Sux raggedy ass wrinkly low hanging BALLS. Good luck. Sending expletive filled prayers. LOL.

    • Scorchy says:

      Hey Lopsided, thanks for taking the time to comment and for reading The Boob. Expletive-filled prayers are probably the best there are, in my humble opinion. In fact, I think they’re working already. xoxoxoxo

  11. Deb says:

    Your post made me angry at how you have been treated, deeply sad for the pain you are enduring & scared shitless that anyone one of us could be (or have been) in your shoes. I say anihilate that FC! My thoughts & prays are with you today & for as long as you need them.
    Sending love your way.

  12. oh, scorch,
    I am so sorry; sorry for the wretched, unrelenting pain, sorry for you having to endure being ignored by the fucking pain person (doc? will not even call him that – that blazing asshole),and sorry that we can’t all wrestle him to the ground and stab him (in the back of course) with your knitting needles. nothing but a big bullshit of fuckedness. I love you honey-girl – I want you to be out of pain -NOW!


    • Scorchy says:

      I have to be clear:
      Pain doc: Stellar and awesome; but he wasn’t on call that night
      So let me save my knitting needles for a better revenge cause. I’m sure something will come up.

  13. Marie says:

    Fuck cancer and fuck stoicism too. And blame, especially fuck blame. Get mad, get the motherfucka radiation and kill the fuck outta that tumor. Then kick the pain management team’s ass. I’m thinking about you. xxoo

  14. Katie says:

    I’ve heard that cheesecake and chocolate ice cream are good for pain management.

    Let’s radiate the shit out of this fucker.

  15. Wondering where you been. Wish I knew what to say…I know, odd phrase to come out of the mouth of a blogger. But then I realize the only words needed are I love you and hate cancer.

  16. I don’t know much about your blog…but I read about you all over Twitter. 🙂 Nothing but love there….and I’m behind on this whole crapfest you’re going through. Nothing but love from me, too.

  17. Oh, Scorchy, it sickens me to hear you’re suffering so. Complete shitness with varying stages of fucktitude. Hang a sac of balls from it and you’ve got yourself Christmas in cancer. Love making up words. Love you.

  18. Acacia says:

    Oh baby, so much love.

  19. So sorry, dear Scorchy. Pain takes precedence over everything. It’s hard to do anything or even think when in severe pain like yours. But I can think and I’m thinking of you.

  20. Susan says:

    Oh Scorchy, I don’t know how I missed this. Yucky doctor! What a frinckin’ pain, literally. So sorry about this. Sending hugs and xoxoxo – Susan

  21. dglassme says:

    Scorch, man, sorry. BALLS!! ❤ Hugs ❤

  22. Jo Ann Feeler says:

    Naughty pain team. No sparklers for pain team this 4rh of July. And I hope their picnic has ants. If positive thoughts help, know that you have many coming your way.

  23. Carol Shaw says:

    Hope relief is headed your way. That’s truly horrible….a pain clinic not jumping on your call. Sheesh. And NO MORE STOICISM! Doctors don’t seem to understand it, I’ve found. Scream bloody hell! You deserve better. You’re in my thoughts.

  24. Nikki says:

    I’m hurting and and angry and pissed off, right along with you. Fuck cancer!

  25. Crystal says:

    Scorchy, I am sad to hear this. Hang in there. Please know I am thinking of you and love you!

  26. Hugs. Love. Lot of curse words on your behalf.

  27. margaret says:

    If mere thoughts of support and love can help, know you are in mine.

  28. vilana says:

    Oh my GAWD!

    I cannot imagine living that kind of pain every day. My closest point of reference is uterus surgery. I awoke from the anaesthesia and they had not given me any pain medication. Lordy. I remembered my body arched off the bed, my fingers like claws holding on to the bedframe, and a low, animalish moan coming out of my mouth. I could not remember the position of the bell to summon the nurses. So I remain like that until my sister came into the room to check me. It was not long, probably 5 minutes BUT I NEVER WANT TO RELIVE PAIN like that.

    I cannot believe that people have to endure that level of pain as a matter of routine. Something must be done to stop it.

    • Scorchy says:

      Holy crap! That is intense Vilana. You know, as I read all of these responses and re-read my essay I wonder how much of this is my fault.

      Hold on! Not saying that the pain is my fault, but when I go to a doc I always present a stoic if not happy picture. At times I must be hard to read. Still, a pain service not returning a call is totally out of line,

  29. gregsmithmd says:

    Being sorry doesn’t help.
    Words don’t help.
    Know that a fellow blogger is thinking of you.

  30. Caroline says:

    I am on the awesome butrans pain patches. Maybe you can ask about them. PUt them on once a week and get a steady dose of opiates each week. Good luck. Pain sucks.

  31. Julie says:

    Crossing my fingers that the pain can get managed and radiation zaps that sucker! Hang in there!

  32. NotDownOrOut says:

    What is going on with that radiation doctor? How can a pain management team not return calls?Painkillers ordinarily address inflammation and nerves as sources of pain. When the pain comes from the bone, it seems like nothing works unless, as you say, it also suppresses some cognitive function because it is reducing consciousness in some way. If one cannot be conscious, then pain’s “experience” is suppressed.
    I have never known the type of pain you describe, but when I was in the worst pain of my life and in a hospital, and I rang the bell for the nurse and no one came and I called out for help and no one answered, I was desolate. I still remember what that felt like. I don’t think it should be okay for professionals to not answer–even if or when their options are few. Even when care is merely palliative (and you are not there yet because you still have therapy underway), there is the human being to treat. We are not diseases. We are people. And part of pain management (at least in theory) seems to be support of the mental and emotional condition of the patient.
    It makes me furious to think of you being so brave and being let down. I’m sure you gave them the “what for,” but that’s not right. I hope the radiation and new treatment protocol works.

  33. alison68 says:

    Omg, my friend lives in USA and she is forever telling the docs to up her meds because of increase pain. Please don’t suffer. My friends latest line is ” i have reached my sell by date”
    Good luck with rads its ok apart from being so fucking tired all the time.

  34. Knot Telling says:

    Wish I had something worthwhile to say. So sorry you have to go through this. Hate cancer. Love you.

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