Emerging from the Underworld

Not sure of any other potential benefits, but these last months have given me a keener insight into severe biochemical depression – I started double dosing Estrace (it rubs the lotion on its skin *twice* a day rather than once) in the last week; as a result, I’m getting a little systemic uptake and effect. That little makes a huge difference. I looked at the pit of general filth and squalor that my kitchen had become, and was actually able to do something about it – it’s a ten to thirty minute job, it’s easy, and you feel so much better once it’s done, whyever not? – but there had been *no* way I could have done it before, it was just too much effort and for no purpose, it was futility squared, and hopeless…

It was like that with everything, everything was simply too much effort and futile; there was no joy nor possibility of joy. I  lost the ability to experience or anticipate pleasure – I would go through the motions, but I couldn’t feel anything even when I knew I *should*, these were all things that I had enjoyed in the past, these were all things I liked. All a flattened gray landscape now.

Take the canceled trip to DC as an example – I could look at it and know I should look forward to it, it had all the things I enjoyed: museums! cherry blossoms! travel! friends! food!

…and it was far too much work, it was far too much effort, there was no anticipation, no joy. It was nothing but a potential burden, another thing I had to do, another set of efforts I was barely able to manage. Ashes and dust, all ashes and dust, clogging my eyes and my lungs. There was no getting out of it, no ‘pulling myself up by my bootstraps‘, no amount of positive thinking changed the reality, there was nothing I could do to change the absence of light. I tried, god knows I tried, I tried all the usual tricks and then some – and nothing was working, nothing changed. The joy sucked out of my life, and I left within the empty husk, going through the motions as best I could, every day growing darker and further away, further into the underworld. The slow extinguishing of self. It is only as I come out of it that I’m able to realize how truly bad it had gotten, how very very close to the drainhole I was.

That was not living, that was existing, and barely at that. That was not me, nor was it a life worth living.

The physical symptoms remain, only slightly diminished, but the belljar has lifted a bit, the air come in, and that makes all the difference. There is the possibility of light again. It’s not complete, not yet, but there’s the promise of joy.

I’ve been depressed before, who among us hasn’t? My previous depressions were with good reasons and they were different; I could still do things, I could still function, I was still *me* – this was different, both quantitatively and qualitatively. It overlaid my life completely. I never understood this quality of depression, because I had never experienced it – and until and unless you *have* experienced it, I don’t think you can really can understand it; already the memory is fading for me.

I wouldn’t wish it on anyone.

Cancer! The gift that keeps sucking.

Though in this case, I should point out that it wasn’t cancer, per se, but the treatment for cancer that has affected me so terribly. It may (or may not have) extended my life but, at the same time, it wreaked utter havoc on the quality of that life, to the point where it was not sustainable. I would rather have died cleanly than lived the rest of my natural lifespan in that state; it was truly that bad.

The thing that remains amazing is that no one thought to warn me beforehand. I was warned of negative effects during the actual treatment, and given medication promptly as needed (or even in advance of need, when the effect was anticipated) but when I raised the issue of lingering and permanent effects from chemotherapy, my concerns were minimized or dismissed.

These are not minor issues. They are – or should be – part and parcel of the decision making process, they should be discussed in depth before treatment. To me, there is no profit in a potential lengthening of my life *if* that life is to be a sort of living hell, dragging myself dully though the days; waiting and wanting only my quietus.

(I do understand the tendency to downplay side effects – as a oncologist, you want your patients to make the treatment choices that will give them the best chance of disease free survival, and by fully informing them of possible undesirable effects, you could easily influence them in the ‘wrong’ direction, but…)

At the very least, after treatment was complete, a thorough discussion of likely or possible delayed effects from treatment, and possible ways of coping with them would have saved me this blind stumbling in the dark, circling the drain and waiting for it to get better when it was only getting worse.

Next week, appointments with the endocrinologist (Wednesday) and the osteopath (Thursday) and, with any luck, at least one of them will be able to hear me, and trust in my knowledge of my self. I am also going to try to schedule a baseline bone density scan – being that I’m not exactly of sturdy build and that I’ve entered the world of early onset menopause, it seems like a Good Idea.

And perhaps – just perhaps – I’ll be able to get on with the work of setting my house in order.

 

This http://surmeno.blogspot.com/ is a great resource for women facing surgical menopause – and pretty damn handy for the rest of us, too. Kudos to the women who created it!

 

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This entry was posted in breast cancer, cancer treatment, chemopause, cytoxan, recovery, Taxotere, Uncategorized. Bookmark the permalink.

8 Responses to Emerging from the Underworld

  1. Cheryl says:

    oh, Meg… we are here! Please let me know if I can do anything. I don’t know exactly how you feel, but I can relate to some of what you have described.

  2. dropjohn says:

    Cheryl – o sweetie!

    Thankfully, it has gotten better. It’s clearly a biochemical problem, add a trace of estradiol and the fog lifts – there was no way of *thinking* my way out, though; simply going through the motions waiting for improvement allowed matters to worsen; neither exercise nor company nor coffee could help. All I could do was weep on people’s shoulders and leave great salt stains.

    It was godawful. I could deal with cancer, I could deal with surgery, and chemotherapy, and radiation and all the physical effects on my body – I’m still not happy with them, but I could cope.

    I could not deal with this. And I refuse to.

  3. Kristen says:

    Meg,

    Your words are too beautiful despite their dark topic to come from one endlessly, needlessly suffering so. I am primarily a seasonal sufferer and can relate to the debilitating nature of that dark frenemy. I hope the cracks of light turn into windows and doorways and finally whole fields of openness and light. Not in the hippie sort of way, just in a functional, glimmers of hope with the shit sort of way the world is supposed to work. Or in a spectacularly playful and joyful way, but in my experience, it doesn’t swing back to the buoyant side of the pendulum in an instant.

    Thinking of you and thanking you for sharing your experience in the hopes that it will change some minds and hearts (and hospital best practices!).

  4. dropjohn says:

    Hospital ‘best practices’! Ha! and wouldn’t chance be a fine thing…. there’s wishful thinking.

    I’ve still a ways to go yet but, at the very least, it’s clear to me now that it is simple biochemical fuckery.

    And that I should have been warned. And treated, as needed.

  5. hinbc says:

    So good to hear that a bit of light is beginning to appear. You might consider yoga – quite beneficial for balance, strength, joint health and improves bone density.

  6. dropjohn says:

    O, J! There’s a long way to go yet, but *if* I can get the help I need, it’s possible… taking yoga is a great idea once my inner weather stabilizes a bit. I’ve done it before and really enjoyed it. I do still have my weekly Qi Gong class – not much, but something.

    miss you

    m

  7. Rebecca R. Noel says:

    Meg, this is a brilliant, blindingly clear, punchingly powerful description of clinical depression. What a bloody low blow after all you had already soldiered through. I’m so glad you are beginning to find a way out, and I’m so glad for your gift of words. Others will be lifted and eased by them.

  8. dropjohn says:

    O, Rebecca

    Thank you. I would be really delighted if there was some positive outcome from this – more than anything else, I would hope that women entering chemotherapy and their doctors would understand the true possible costs of that choice. This was a medically induced depression, and that I was not warned of this and the other effects on my body and mind *before* I entered treatment is, to me, unconscionable.

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