Rear View Mirror

The human body does a wonderful thing by making you forget pain.  You know you had it.  You can kind of describe it–using the words you coined when it was at its worst.  You can sometimes point to where it was.  But you don’t actually remember it.

I realized this when I read a post I pulled from the cleavage “The Bridge is Pink.”  It was the most intense week of living with the lower back pain that had been caused by the tumor flare.  I was scared.  I could hardly walk, when I did it was with a cane, my professional life was taking a beating, and for all that I knew at the time cancer was on an all out assault and was killing me.  This was all I knew at the time.  And it would continue well into December.  I felt assaulted, violated, and beaten.

But in hindsight I now know a few more things about that period.  It was the high point of the tumor flare and in subsequent weeks not only would those lesions shrink, but by February 2013 they would be all but resolved.  After I met with an anesthesiologist specializing in pain management in December, I learned that the back pain–post tumor flare–was not from cancer.  It was, instead, an old back injury that had been kick started by the tumor flare.  I was hit by a car some thirty years ago, and I had a herniated disk and a laminectomy.  I have severe arthritis of the facets in my back–most likely a result of that early trauma.  And I probably had it for many years going back into my twenties.   The flare of the lytic lesions + the affected and now weakened vertebrae, and shifted body weight to the facets = debilitating pain.

CaptureKnowing that it was a relief in and of itself.  Cancer wasn’t taking my life away; I wasn’t going to be in that level of miserable pain for the rest of my days.  And it was treated.  It was rough in the beginning of treatment and I was high for most of December and part of January, but new medications and two nerve blocks eventually relieved the pain and had me back in the saddle again.  I returned to work, started my spring walks a bit, and even started to wear heels again.  Indeed, I wore those heels on a six block walk from Arch Street to Head House Square in Philadelphia–and it was glorious!   I was normal again!

Pain erodes your world–steadily and forcefully.  In losing the ability to function normally you lose confidence in your abilities and your self-esteem is blanched.  You have no energy and lose the will to do anything; everything from putting on make-up to cleaning to cooking to talking becomes a burden.   People lose patience with you, HR departments begin to hint that you’re replaceable, bosses begin to get impatient, friends don’t understand why you can have fun for a few hours one day and then lock yourself away for ten days more.  You push through, even when you can’t, because you don’t want to be considered a loser or a malingerer.  You feel like you’re losing and there is no way back.   Society sees you walking with a cane and measuring your steps and tells you that this is your fault.  You’re not fighting hard enough.   You’re not happy enough.  I mean, c’mon, if it was that bad wouldn’t you be in the hospital?  Malingerer.  Loser.  Coward.

When the pain returned in earnest on Sunday–just a few days ago–I was caught off guard.   The first emotion I felt was disbelief: I could not believe I had lived four months with this intense pain before I really got targeted help for it.  No wonder I felt so defeated and alone.  The next thing I felt was reassurance, for I now knew that this was treatable and that the end was near as soon as that nerve block was scheduled.  And as bad as it is right now, it’s not the agony I was in previously since I take scheduled medications that have had a cumulative effect in managing the spondylosis.

A cancer diagnosis throws you up against the wall and laid out before you are the things you most care about, live for, and would die for.   But as we begin to live the experience the shock fades and we need to deal with other challenges.  For some it involves chemical warfare, for others radiation, for still others surgery.  All of these things involve physical effects that anyone on the outside cannot see.  Indeed, we can’t see them–they are felt and internalized.  Pains eats away at our very souls and even destroys how we see the world.

Would that everyone knew this.  But it’s impossible to understand unless you’ve been through it.

And I wouldn’t wish it on anyone.

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21 Responses to Rear View Mirror

  1. a says:

    Good information thank you closely monitor your success.

  2. juneaubugg (aka Jennifer) says:

    So well articulated… I lived for 6 years with debilitating sciatica before I got it under control. Other people couldn’t SEE IT, so they just didn’t get it. HUGS Scorchy!

  3. I’m so sorry you are feeling the pain again. I hope that nerve block works miraculous wonders. ~Catherine

  4. Victoria says:

    Oh this is a good one. My low point was the taxotere which caused extreme joint and muscle pain. Today as I walk my garden it’s hard to remember that a few short months ago I was popping opiates and confined to my couch/bed.

    And you bet that does something to you. I find myself constantly using the hospital’s 1-10 scale – is it weak enough to be managed with a couple of aspirin or do I have to break out the Ixprim?

    For the most part people were pretty understanding when I looked sick (no hair, no fingernails and all the rest). They are less understanding now that I “look great.” But some days I don’t feel great – pain in my hipbones and my shoulder. The visual cues just aren’t there any more and some folks make a snap judgement which consists of “matching their insides to my outside.”

    I don’t make a big deal out of it but I really wish they would cut it out.

    • Scorchy says:

      It’s difficult when you have the people on the outside judging what they can’t see. You can’t really “communicate” pain to someone else. xoxo

  5. oh, scorch, what a walk down a painful memory lane. looking back is sometimes so hard to do. but you did it, got reassurance, and wrote this incredibly honest post . i am sure that others reading it will be so relieved (literally, now knowing how to reach out for help) and will be so grateful to see themselves in your words, knowing they are not alone. so many people suffer in silence, and try so hard to carry on, suffering judgement and minimizing of their awful distress, and being isolated by the horrible depletion of energy it takes to fight their pain. i am so sorry you’ve suffered – both from agonizing pain and the fear it induced. i will breathe a sigh of relief when you have that nerve block – can’t some too soon!

    love and gentle hugs, dear friend, XOXO

    karen, TC

  6. hermyleen says:

    Pain & fatigue comes and goes as it pleases, it’s so debilitating. I hope you’re on the mend. I agree people don’t really understand unless you’ve gone through it yourself.

    • Scorchy says:

      It’s impossible to really know, isn’t it? Heck, I’ve got stage iv cancer and when I learned that my friend had just been diagnosed with metastasis I didn’t know what to say! Hope you’re doing well. xoxoxoxo

  7. Ouch! Thank you, Scorchy. This week I need a reminder that I don’t have to live like this. And I won’t, after I see the Pain Clinic. Nerve block, eh? Got look into that.

    • Scorchy says:

      I love the nerve block. I am one with the nerve block. I used to be terrified of anyone putting a needle into my lower back–let along four–but man! It feels so good when it’s done. And it’s about 10 minutes. Now if they only had a nerd block.

  8. Susan Zager says:

    Especially when you don’t know why there is that type of pain it can really play tricks with the mind. I am sorry you have to deal with it, but glad you understand and hopefully have treatment that works for you without making you feel out of it. xoxoxo – Susan

  9. Katie says:

    “The human body does a wonderful thing by making you forget pain. You know you had it. You can kind of describe it–using the words you coined when it was at its worst.” Very true. It’s a laughable comparison, but this how I felt post gallbladder attack each time.

  10. Knot Telling says:

    “Pain erodes your world–steadily and forcefully.”

    Yes, it does. Perfectly put.

    I’m sorry you have to walk this road, Scorch, but selfishly glad that you are here beside me.

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