Pain Management

So I’m five months into this cancer crap.  And, to quote a popular refrain, “what a long strange trip it’s been.”

I take it a day at a time, but the days have been pretty long since October.   The last feeling of real progress and overall optimism was in September when I met Dr. Raptis.  I was moving forward in an environment of respect and trust and that was enough for me.   As I look back on the past few months, once the back pain took over in earnest in October it was quite a challenge to look ahead to better days.  This is a downside of being very present-oriented: when we go though all of this crap it’s hard to look forward and be hopeful without sounding like a perky cliché.   And feeling as I have lately, any time I read one of those perky comments I reached behind me, took out my virtual shovel, and virtually smacked that person right in the puss.  (#onereasonwhytwitterfollowersgoaway)

Pain plays weird tricks on you.  It gradually erodes your ability to keep your confidence and even trust yourself.    “Hurt!  HURT!  I hurt now!” trades places with “I don’t feel anything now. Was it really there?  It must be in my head.”   It’s like the drunk relative that shows up and fucks up your party.   It saps your energy, makes you feel all around disgusted, and makes you question good outcomes.  Sure, I knew I had metastatic breast cancer, but add extraordinary pain and the sheer weight of that diagnosis and prognosis became, in some moments, too heavy to carry around.  It was, in every sense of the word, a true burden.  The worst time of the day was bedtime.  I’d lay my head on the pillow, the cats would position themselves around (and on) me, and then I would cry.  It would just come.  I never thought this would be a picnic, but to be so debilitated so soon?   Balls!  I can’t go down like this.

As karma would have it, I woke up on Sunday and a newly-made friend, Christie, sent me a Facebook message about pain.  Out of the blue.  It was as if she was privy to my internal conversation and my growing sense of despair.  “When pain crosses the line from warning to torture,” she wrote,  “we have a significant problem.  And there needs to be an actual plan in place to deal with it as such.”

She nailed it: torture.  Christie went on to suggest that I ask for a consult with a pain management service.  “The shit you are living with, it was designed for heavy duty narcs. And you earn them every time you get up, keep moving, and tell cancer to fuck off.”   She was right!  Why was I settling?  I don’t settle for anything and yet I’m going to settle for pain?  I fired off an email to the physician’s assistant and asked for her guidance; I was between oncologists and didn’t know who to ask for help.  I didn’t doubt that I would get help and it came quickly.

Yesterday I had an appointment with an exceptional physician at Mount Sinai to talk pain.  I didn’t know what to expect, but I knew I felt defeated and somewhat hopeless.  I filled out the paperwork, indicated on the diagram where the pain was, and even drew a graph to illustrate how it fluctuated from October to the present.   Through our conversation I got a better sense of the context of the pain and the many options available to treat it.  Just learning that this was something that could be managed with a variety of tools was a relief.

For one thing, I learned that the lytic lesions, which had grown and since improved, may have kick-started this whole process, but the pain wasn’t coming solely from that damaged bone.  He hypothesized that it was coming from the vertebral facets which now had taken over to support the weight that the damaged bone could no longer do.  They are likely arthritic and with their new stress are causing muscle spasms, general pain, and irritating the nerves.  Just understanding the physiology was mood altering for me.  And now that we had a better handle on the physiology a plan could be developed to deal.

capture

The plan involves, first, an MRI of the lumbar spine to see how this hypothesis stacks up against a more accurate and detailed image of the physiology.  In the meantime, I am using lidocaine patches on the lumbar area of my spine, taking Lyrica on a schedule to get ahead of the neuropathic pain, and Oxycodone for any breakthrough pain.  If the MRI supports the hypothesis, then I will  have a nerve block injection.  There are other options should any one component not be successful.

drwhoyesI may have gone into that office dejected and disgusted, but I left it uplifted and hopeful.  For the first time in two months I actually feel like my future is not wholly dictated by neurons firing pain signals.  I am hopeful that I’ll be able to move ahead with my life, with my career, and with this conserved energy push back against the disease.  ‘Cause, fuck you, cancer.  I’ve got my life to live.

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22 Responses to Pain Management

  1. Scott MacKenzie says:

    So happy to hear this! Yay!

  2. keithw says:

    I have been lurking for the couple of days it took to read up to current. First your insights into managing the pain, and managing the psychic load have helped me with my love – we are both new to this. She is the one with the disease but I am trying everything I can think of to be there for her. Not even other cancer patients get it when someone is Stage IV. The Komen barrier is what I have began calling it – they don’t get it. This shit sucks.

    • Scorchy says:

      The one thing I have learned that just being there for a loved one is enough. To listen, to hug, to support. When I was on the other side, so to speak, I always thought I had to physically DO something for that person. But being that person today I realize it’s not necessary to do anything (although things like picking up chores, shopping, laundry, etc. would certainly help). It’s just being there.

      The other thing that I would say is that folks that are not stage iv do get it. Sure, these folks may not get it 100% because they’re not in stage iv shoes (thank god–and I don’t ever want them to get it 100%), but the fear, uncertainty, pain, life impact? They get it. I don’t know what I’d do without my breast friends.

      • Sara P says:

        As a “survivor” of a small, early cancer, I can tell you that while I haven’t EXPERIENCED stage 4 cancer…I DO get it. To Scorchy’s point…the uncertainty? Pain? Life impact? (Including career impact?) And the fear. Not the fear of dying from this shit, at least not now, but the very real fear that it can come back in a more aggressive form and that we are not immune to Stage IV BC…ever. There’s not a single survivor who can’t imagine themselves in Stage IV shoes, and who doesn’t seek to understand what someone like Scorch is going through.

        Rant over.

  3. dear scorchy,

    hooray! i am so happy you are rockin’ the pain meds, feeling more hopeful, and have given fucking cancer another hard kick in it’s good-for-nothin’ ass. feels good, doesn’t it – taking it to the mat and winning, plus REALLY GOOD DRUGS.

    i’ll drink to that!

    karen, TC

  4. Susan says:

    I am so glad you got relief from your pain. You should never have to be in pain and if those meds ever start to fail you there are plenty more that won’t make get rid of the pain and give you quality of life. I am so glad you went to a pain specialist, because oncologists don’t always know the right meds for pain, even really good ones. Fuck cancer and Go Scorchy! Hugs!!!!!!!!!!!!!!!

  5. NOW, let’s see how we can amplify the effects of this as we slam back a few shots of tequila. I’m having a sucky kinda day so I’m ready for the tequila. You in? I’ll even bring the salt and the lemons….

    xoxox

    • Scorchy says:

      BWAH! I’ll tell ya, man, I am so high from this shit I’ll just sit back and help you get tuned. We’ll both walk alike and no one will be able to tell the difference.

  6. Sara P says:

    Yay, I am SO glad you are feeling stronger and getting some pain relief. Now be sure to use that cane when you’re kicking cancer’s ass…we wouldn’t want you to fall and break something important…like a nail. 😉 (((hugs))

    • Scorchy says:

      Get off my lawn Cancer! (Shakes cane at hallucination from Lidocaine patch)

      • Sara P says:

        They cause hallucinations? Wow. I have like 3 of them in my medicine cabinet from a back injury years ago. How long to I have to leave it on before I hallucinate that George Clooney is naked in my bed?

      • Scorchy says:

        I’ve been waiting for a similar hallucination with Hugh Jackman, but nothing yet. I’m gonna try the whole pack tomorrow and wrap myself up like a mummy. I’ll report back.

  7. Go, girl! Awesome post. So glad you’re getting what you need and as always, I’m loving your feisty attitude!

  8. Hell yeah girlfriend! Fuck cancer! So glad you’re finding some relief from the pain and feeling more hopeful. This journey is so twisted. Those bad days really suck. When they come it’s so hard not to get lost in the downward spiral. I just hope those days go quickly and when a new day comes it’s better than the day before. Stay strong!!! And enjoy those meds! 🙂

    • Scorchy says:

      I’ll tell you what–this Lyrica stuff? I was so fucking high I needed the cane for balance–not pain. No wonder he’s slowly working my up to a full schedule. Cripes!

  9. Knot Telling says:

    Okay, now don’t get the shovel out yet. Hear me out first.

    You are courageous. You are braver than I because you have looked the pain demon in the eye and took aim at the sucker. I’m still not able to do that – denial, thy name is Knot Telling.

  10. Praying that you are on the right path now. Oh, and that guy with his thumbs… took me about 10 minutes to read your last paragraph.

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