The Patchwork Girl, Falling Apart

I’ve been figuring out the patches over the last couple of months, learning all the little tricks that go along with any new regime. Things like the .1 patches don’t adhere that well -they’re just too large – but if I cut them in half and apply each half separately they’ll adhere fine; and that they work best at least a few hours after a shower, sooner than that and they tend to peel. Since the matrix is the medium, it’s really important that they do stick – the glue *is* the delivery system, and if it’s not sticking, it’s not working.

I  have to rotate patch locations each time I change over, since it’s a simple osmosis system – the estrogen is moving from a high density area (the patch) to a low density area (me). Leave the placement the same and that particular area gets saturated, which means less systemic uptake – plus the risk of developing skin irritation or a lovely little local bloom of blood vessels. Different areas have different uptake rates, depending on skin thickness, blood supply and underlying tissues and the differences can be substantial – even using the manufacturer’s recommended sites, uptake can vary by as much as 25%. Luckily enough, it doesn’t seem to make much difference for me if the patch is on my butt  or belly or thigh – they all seem to work reasonably well. The recommendations are for the butt or belly placement only, but I was told I could place them just about anywhere on my body (other than my breasts, obviously – and as if I’d want to! Estrogen pasties, I *don’t* think so.) and get more or less the same results.

Emboldened by that advice, and by my success so far, I decided to try an off label placement at the beginning of the month- it’s a bit disconcerting to me to have the patches on the ‘private’ part of my body,  and I figured I’d be more comfortable psychologically if I could wear them on my upper arm, like a nicotine patch. Yes, it’d be more visible in the ‘real’ world, but it’d be less visible to me, and that’s what counts. Being cautious, I put a half patch on my arm, and left the other half in its more usual placement.

And it all went swimmingly. I was utterly comfortable with the patch on my arm, much less psychologically troubling, it held on fine, no problems whatsoever with that, and for the first week or so of my off label placement things seemed to be going relatively well – right up to the point where I found myself sitting on the floor weeping for hours.

Apparently, arm placement does NOT work for me – I effectively halved my dose for about a week and a half, my body ran through whatever meager reserves it had managed to accumulate, and then decided it needed to let me know just how unhappy it was. Which was very very very goddamned unhappy, and I shan’t be doing that again soon.

I figured it out on the 15th – the slide was just gradual enough so that I didn’t realize what was going on *until* I hit bottom – and it’s taken me this long to get back somewhere close to the starting point again, with a number of bobbles along the way. Part of that may be due to the unseasonably hot weather – apparently heat makes you burn estrogen a bit faster – but it’s been a slow and disheartening process, two steps forward, one back. I’ll feel as though I’ve turned the corner, well on my way back, and then find myself tearing up again, or exhausted by midday, falling asleep standing up.

It’s immensely disconcerting to lose my self so easily – and having to rely on medication for my self is a bitter pill to swallow. This bobble drove home just how reliant I am on medication now – without it, I’ve no doubt I’d be taking the stage left exit. The way I look at it is that this is all ‘bonus’ time – by rights I’d be dead by now, or well on my way there, were it not for medical intervention – and there’s just no point in bonus time if it’s spent in hell. That’s not living, but existing – there’s no joy, nor anticipation of joy. My brain’s reward circuits fail; nothing brings pleasure, nothing satisfies. Not food, no matter how tempting; not music, no matter how thrilling; no accomplishment has meaning or reward in and of itself- it’s just another thing done in the endless list of things to be done, with no energy to do any of them, and no internal reward for accomplishing any task. The best I can hope at that point is the passage of time without pain – I can distract myself with reading for a time, but the least bit of emotion tips me into tears again.

It is a completely miserable place to be. It is also utterly unlike me – I’m the one who plants thousands of bulbs every fall, who has colonized my neighborhood’s greenbelts with gardens; the person with a half dozen projects – at least! – going full tilt boogie at any one time; tearing up floors and tearing down walls, gaily gaily, crowbar and hammer in hand; the one who just gets on with it already, whatever ‘it’ is. I’m the one sitting on the floor sniveling, unable to escape this malaise through my own devices, all my old tricks and gambols turned to dust, worthless in the face of this enemy. In the moment, it’s all I can do to hang on to the promise that it will get better; I can’t really believe it, but I can hold on to the edge of that promise grimly.

That alone, that simple act of faith, takes all my energy.

It has gotten better, albeit much more slowly than I’d like, and not as much as I’d like. I had more energy, more ambition, in the midst of chemotherapy; that’s the sad truth. I was more my *self*. I miss that person, and I’m not best fond of this new one – really, who would be? I’ve proven fairly definitively that it can get a lot worse,  easily and speedily at that; I’m hoping it will get better, but I can’t say for sure yet. I’m pretty sure it did last time, and that’s what emboldened me to try the my little experiment, that I was that much closer to ‘normal’ or what passes for it in my reality.

For now, I’m holding on to the hope that it will get better.

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

2 Responses to The Patchwork Girl, Falling Apart

  1. Beverly says:

    Love, love, love to you, Meglet. I love you. -Beverly

  2. dropjohn says:

    Thanks, Beverly – it’s always good to be reminded. xxx

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