Squeeze Play

Follow up mammogram today – and you know I’m looking forward to it. I’m not expecting it to show anything dire; to be honest, I don’t have much faith in the technology to show anything dire before I notice it. After all, it didn’t last time – but I’ll go through the procedure, and there’ll be the slight relief when the ‘all clear’ comes. NED – No Evidence of Disease*.

And onward.

*If there are other results, you can join me in cursing the gods (and the little fishes too).


NED it is – I have no great faith in the diagnostics at this stage, but NED still beats the alternative, eh?



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Playing Doctor

The continuing log of trial and error.

After 64 hours of the 84 hour Vivelle Dot at .05, I was beginning the downward slide – and I never got adequate relief. Mood and energy improved slightly, though not enough (have I mentioned how much I hate crying in public, especially during business type meetings?), but the majority of the physical symptoms continued (muscle and joint pain & aches, dry mouth, dry eyes, irritation & pain of mucous membranes, etc) with only the slightest relief. By last night, I could feel myself sliding down again, into the pit.

I’m trying the .0375 and the .05 together, for a combined dose of .0875.

On one hand, I feel as though I might be rushing things, being impatient with the process – I had really wanted to try staying at the .05 dose for two full cycles, which is only a week, after all; on the other, the last time I tried that when I could *feel* things starting to go south, I ended up in desperate straits. I’m just so tired of being in pain; I miss *me*.

My experience thus far has been: wild rollercoaster ride with the generic at .0375, with the ‘ups’ being wonderful, feeling my ‘self’ again, and the ‘downs’ being beyond dismal (aka wildly uneven dose uptake); almost no relief with Vivelle at .0375; and very slight relief with the Vivelle at .05 – a much gentler arc in general, but definitely not enough.

Intellectually, I can see it’s been under a month, and I should expect it to take some time to get it right (especially coming from a period of severe depletion) – emotionally, it’s a different story. I almost think the ‘good’ periods with the generic, where I felt myself, make it harder to accept or acknowledge the more subtle changes that happen with a more even dose. I want to be back *there*, where I didn’t hurt and felt ok about my life and could *do* things – and I want it *now*, dammit… I’ve had *months* of stumbling in the dark and barking my shins on every possible edge, I want it *over*.


P.S. One delightful effect of all this mucking about with dosages that I’ve failed to mention: I’ve been breaking out like a madman. Yes, my *body* may feel like I’m 90, but I’ve got the complexion of a teenager again!

Just to add insult to injury…


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Moving on up

The Vivelle Dot (at .0375) lasted about 3 days – luckily I have friends who check in with me (thanks, Ron!); I would have given it a week, just to be sure, even though I wasn’t getting relief from symptoms. Ron called and persuaded me to call the doctor; I called the doctor and they issued a new scrip. I’ve been moved up to the next level, a .05 dosage. Insurance won’t cover it, for some obscure reason, but luckily enough it’s relatively cheap – $35 for 8 little stickers, a month’s supply. Still the same tiny clear sticker, nowhere near as obtrusive as the generic (still have the mark from that first patch *eyeroll*).

I’m not getting the insta-relief I got with the generic, and I’m not getting the rollercoaster ride either – it’s a much more subtle process, which I’m thinking is a good thing overall (though I confess to missing the upward swing, that lovely sudden return to *me*,  the downside was fierce).

This is still a relatively low dose, considered the normal ‘starting’ dose, so there’s still room to tweak as needed – though keeping the dose lower is considered better, given my history of ER positive breast cancer. Still, it’s probably less than my body would have been producing naturally had I NOT gone though chemotherapy…   hard to say, not knowing.

It’s all still very strange and new to me, this dance with medication, especially as I’ve been fairly resistant to taking medications most of my life – I don’t *like* the idea of changing who I am by adding drugs (aside from coffee, of course, which is not really a drug but a food source. So say we all). My reasoning tended to be along the lines of:  if I, as a normal functioning human, need to take drugs to bear my life, it’s a good signal that I need to change my life instead. Hubris!

The truth is that the reality without was looking pretty grim – to say the least – both physically and emotionally and, try as I might, I couldn’t overcome it, I couldn’t change it. There was no ‘quality of life’, just a quality of existence – and I’m not willing to live like that. Add to that the fact that this isn’t a drug, per se, but more along the lines of a supplement; a substance my body would normally produce naturally but that, due to damage, can no longer create.  I am no longer a ‘normal functioning human’; I’ve been damaged- change my life all I want, that fact remains.

I remain somewhat uneasy with the concept; I vastly dislike the idea of my body and mind not functioning properly without outside intervention; and I’m slowly coming to grips with it. The ‘new normal‘, as they say – and, for me, it includes learning this dance with medication.

I’ll let you know how my new partner works out.

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The Patch – Take Two

In the midst of my little meltdown, I called the doctor’s office – and I’m now on the Vivelle Dot, a non generic, change twice a week patch. In contrast to the generic, it’s tiny (about half the size of a postage stamp) and clear – looking like nothing so much as a bit of tape stuck on my belly. Same dosage (.0375) – and while the doctors and the insurance wrangle over payment, I went to the website, downloaded a coupon for a month’s supply, and got a box of eight single stick doses yesterday.

Came home, cleared off the appropriate acreage, and slapped it on at once – the last generic  patch was on Day 5 and I was feeling most unhappy in body and mind (if not quite at the point of meltdown, rapidly approaching it).

It’s all very interesting, though it would be ever so much more so if I wasn’t the one going through it. The generic patch would give me close to immediate relief, I’d have at least one day of really feeling  myself again in body and mind, and then a rapid decline to the crash and burn; this has been a much slower and less dramatic journey so far. I don’t feel myself yet, body nor mind, but there’s a slow upward trend, and I hope to avoid the crash altogether.

It’s the exact same medication, the same delivery path, the same dose, neither patch ‘failed’ in terms of adhesion – and there’s a dramatic difference in my body’s reactions. Remembering that all patches work on a simple diffusion principle, my half assed guess is that I could (and did) absorb a larger dose faster from the larger area of the generic, granting me close to instant relief – and then I would burn through the available supply relatively quickly. Very American of me, I know – more more more until it’s all gone and the world falls apart. The *much* smaller surface area of the Vivelle doesn’t allow the same rapid uptake and rapid relief, and I’m hoping it’ll sustain a more constant level.

Well, it’s my theory, though it may all be just wind in sails… we’ll have to see how it all pans out. Same bat time, same bat channel, boys and girls…. stay tuned.


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Falling Apart

I waited until the morning of the seventh day to peel the old patch and slap a new one on – and that was a Terrible Dreadful Mistake, indeed. I knew the supposedly seven day patch had been pretty much exhausted by the end of the fourth day but for some reason I was determined to be a compliant patient and to go the full seven days – I made it to six and half, and I’ll not do that again.

Yesterday morning I was sure sure sure I was utterly broken, broken in so many ways, and the only rational course of action was suicide; I couldn’t do this, not anymore; couldn’t put myself together again; I couldn’t clean the house, or spend all my money, or anything. It was beyond dreadful – I did have the sense left to pull the old patch off first thing in the morning (leaving a little sucker mark on my thigh- get a few more and I’ll be starring in Japanese tentacle porn) and stick a new one on; then I wept on the phone, and then to the doctor’s office, and then all over my poor tenants, too. And I gradually regained my equilibrium as the day went on. Today, I’m pretty much fine, if a bit overtired and wrung out from all the emotional tohu-bohu.

It’s scary how very much of what we think of as our ‘self’ is simply chemical interactions- change the chemicals, and change the self.

The truth being: I am broken. The self that is ‘me’ isn’t going to work anymore without outside intervention; I’ll not survive the coming apocalypse. So much for that youthful dream!

And it sucks, and it’s harder than cancer ever was (for me, at least), it’s worse than chemotherapy, and it was most likely unnecessary. I wasn’t warned, and I should have been.

And there’s no changing it. There’s no going back, much as I would wish to; there’s nothing to do but get on with it, and figure it out. Which is what I’m doing today – the first lesson being to fuck with your meds when you know you need to.

Eventually, I’ll get around to cleaning the house.


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The Patch – Take One

It’s a big ugly thing stuck on my upper thigh – about 2″ diameter, the ‘flesh’ tone of cheap bandaids with a ring of adhesive leaking out from around it. It burns a bit, it’s bulky enough to be slightly uncomfortable, it’s far from attractive or even inconspicuous – and it works.

Well, sort of.

The first day I felt slightly edgy and jittery, a bit too much coffee; the second day I stabilized out of that and back to something closer to my self; by the evening of the fourth day, my energy levels were dropping again, and I was ready for bed by 8:00. Day five today and my body’s still adjusting – the common wisdom is that it takes at least a couple of weeks to get a good read on whether the dose is adequate to the body’s needs or not, add that to several months of severe estrogen depletion and it may take longer – right now I’m exhausted again, tired beyond tears, swaying on my feet as I have been for most of the day.

My guess is that the patch dose is too low for my needs, certainly for my current needs,  and I’ve pretty well exhausted it (it’s not a time release system, but a simple diffusion system*) after three to four days. I’m going to stick to the seven day replacement cycle as prescribed for now – if this cycle of reactions continues to repeat, that will be more information.

The good news, though, is that it works. The dose may need to be adjusted, but the basic premise is sound.


I can’t praise these folks highly enough, btw.

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Patching myself back together

I saw the endocrinologist today, and – lo and behold! – I left with a scrip for Climara, a low dose (.0375 mg per day) estrogen patch.

It was not a decision she made lightly, and she wants me to add an SSRI at some point (I agreed, reluctantly, on the condition that we start with estrogen supplementation alone, so I can more easily judge where effects are coming from – and she agreed).

The relief is amazing. Whether or not this will be the ultimate answer to balancing my hormonal needs, it’s an amazing relief to have a doctor who listens, and who trusts me enough to know that I’m capable of understanding and evaluating risks/benefits around my own health. Finally.

I ended up with the generic, same dosage but made by Mylan. Picked it up this early evening, swiped off the appropriate acreage, and slapped the sucker on. It’s a bit bulky and stiff, not exactly attractive, but if it works, I can deal with that. It should be good for a week, then I’ll peel it off and repeat the process (though in another area, in order to reduce the risk of skin irritation). Results should start to show up in a couple of weeks – though knowing me, it’s likely to be sooner.

She also agreed with my analysis that my ovaries are most likely utterly fried; I might as well as have had them out for all their functionality (and that’s judging by the levels taken early November, before I went to Scotland, before things got really grim). Now what’s important to understand about that is that even after menopause, the ovaries continue to produce hormones, albeit at a reduced rate.  If mine aren’t working at all, my baseline levels of hormones are going to be inadequate for meeting my body’s needs – and that’s pretty much just what I’ve experienced.

(for a more complete discussion of this see: http://surmeno.blogspot.com/2006/03/surgical-menopause-definitions.html. Yes, the author is referring to surgical menopause, rather than chemical but, in my case, the reality is much the same)

This not only has the obvious immediate effects on quality of life, as I’ve so amply demonstrated, but causes long term health risks (most notably in terms of cardiovascular health and bone health).

When I entered chemotherapy, I knew there would be four months of hell. I knew I’d lose my hair, I knew I’d likely lose some brain function, I knew there was a possibility of neuropathy. I wasn’t happy about any of that, especially the brain function, but I put it on the table, I made that trade with my eyes open. I agreed to it. And it has come to pass, and I’m not best pleased, but it’s the trade I was willing to make, the trade I agreed to. There’s no such thing as a free lunch.

This other, this chemical castration, I did not agree to. What I am doing now is attempting to right that balance – to restore to my body something close to the levels of hormones I would naturally be producing, the levels of hormones my body and mind need in order to function.

The relief of finding a doctor who will work with me, who is willing to – o, it is beyond words.

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March Hairs

As a bit of light relief from the rest of reality – what my hair looks like now, some seven months after my last chemo. I’ve run the clippers over it a couple of times, but the bangs (such as they are) are the full glorious length.

Such as it is.

Like the rest of reality, it’s not what it was – steel gray and black (black?!? wtf?!!!!), coarse and rough, and decidedly thinner. I get cold without my hat on these days, and I miss the close cropped velvet hand feel that it used to have. It’s a small thing, but odd to run my hand over my head and feel someone else’s hair texture.

The bangs have their ‘chemo curl’, a tighter curl than my own, and it’s hard to tell yet if that will stay or go as it continues to grow out.

Still, it’s far better – and warmer! –  than no hair at all.  And it will grow.

And as for the color- well, there’s always Manic Panic. Thanks Tish & Snooky!

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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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three down, two to go

One more doctor down – an equally lovely doctor in her own way, Dr. Lorilee Schoenbeck, and equally unwilling to prescribe. She offered me the possibility of black cohosh and ayurvedic remedies*, soothing salves made from calendula and cocoa butter, glucosamine supplements for my increasing creakiness; she agreed that all my listed problems could be solved by hrt, and she wasn’t comfortable prescribing it.

For the record, black cohosh does *nothing* for me; it’s bloody useless. For the record, I understand hrt raises my risks of recurrence, though I’d be happy to have more detailed information, and I’m fully capable of making my own decisions around my health (assuming doctors trust me enough to fully inform me to start with – I can do my own research, but I know I’m limited).

In all honesty, had it been six months ago, or even three, I might have been more open to trying alternative medicines. I had more time then. Here and now, I’m close to the end of my tether, and I don’t have the patience, I don’t have the time. I’m not asking blindly; I’m not asking as a first resort. I started out with herbal and OTC remedies, they didn’t work. I added the lowest possible dose of localized estradiol, things kept getting worse.

This isn’t working for me. This isn’t a natural process, it’s utterly unnatural, and it is killing me.

Two more doctors to go.


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