‘Tis but a scratch!

I’ve had worse…..

Because life just works out that way sometimes, I had just about recovered from the Three Week Cold – and I ended up with a staph infection all down the right side of my neck. This evolved in a day’s time from ‘hmmm, that’s not looking good, but it should clear up’ to ‘if this was on anyone else, I’d be making them go to the doctor‘. So, as soon as the clinic opened Wednesday morning I called in – and in I went, same day. Even got to see my primary, whom I love.

Keflex, 500 mg 3x a day – it’s just like Kevlar, only totally different. The neck’s begun to clear up, but I ended up in Urgent Care yesterday – the buggering thing is in my *eyes* now; both lower eyelids painful, swollen, and starting to blister along the lash line, and they thought it would be a Good Thing for me to come in. I was not in disagreement.

I’ll have a longer stay on the Keflex, and now have erythromycin ointment for my eyes as well – just more Vaseline on the lens.

It’s all disgusting and horrid and uncomfortable and ugly  (and contagious!), and this, too, shall pass. It’d be lovely if it could do it *quickly*; I’ve got things to do here.

 

Grave Matters

Between my last post and this one, a lot’s been happening – none of it to do with cancer or surgery or recovery or any of that. I caught the three week cold that’s been going around, and it was wretched; we had the last service for my father, up on the hillside above Norwich; I finished up my end of the estate accounting and sent it off to the lawyers; we had our first big snowstorm (way too early – thanks, global weirding); and my beloved annoying 19 year old Zoe cat came to her end.

She’d been getting thinner and thinner over the past few years,  fur coat loose over bones, picky and pickier about eating until she stopped altogether, nothing would tempt her. A day later she gave up on drinking, curled into a corner of the couch and waited. I kept vigil beside her, sleeping on the living room floor, waking to drip tranquilizer into the corner of her mouth; petting her, her head still pushing up into my palm, her paw wrapping around my hand, the faint vibration of her purr deep in her chest still transmitting love; assuring her she was a good Zoe cat, she was loved.

She died early morning on the 13^th; farewell to the little life, little light. It was harder than I thought it would be, though I knew it was coming; the loss.

A year ago Monday, I was in the hospital, watching my father die. He was off the ventilator, on a morphine drip; we were watching him breathing, waiting for the end. Keeping vigil. The loss.

November 27^th, 2018, the day we were supposed to bury my father, we had the first major snowstorm of the season; the grave was dug, but the road up was impassable; the required concrete vault couldn’t be installed; and it wasn’t going to happen, no matter how we tried. He had to wait for spring, provisioned with all his grave goods – the eternal pipe and tobacco; matches and pipe cleaners and tools; pocket knife, and slide rule, and ice ax; his high pointers pin and Norwich medallion; his hat and boots. And the work of his estate began, sorting a long lifetime of memories and belongings and all the discord… a year later, it’s nearing the end.

This year, I shoveled the snow back, and dug the small grave myself. Lined it with green  cedar, no vault required; the estate much smaller and settled without contention; the body committed with love and care and her own wee collection of grave goods. A tag with her name; her favored toys from Armenia; catnip and flowers and a warm shawl to wrap her in. She’s still a good Zoe cat.

We do these things out of love. We know the body is just a body; the spirit and the life force gone – but the body and the empty house is all we have left. We pour out our love for the person; we give them their provisions and their name and our love; we wrap them carefully against the cold and we give them back to the earth.

With all our love.

 

Resuming Reality

Counting the time down, it’s been 3 months and 23 days since surgery (115 days total), and I’m at a point where it’s 90% business as usual. Which is mostly what it has been of late – a month off with my delightful Scottish guest, during which we did absolutely NOTHING of note, huzzah!; finally closing on my father’s house (I’m the executor for his estate, and that’s been a year of more trouble and strife than I could have imagined); and the all consuming and time dependent winter prep for my house and gardens. Also an ongoing effort to rescue a stray parakeet before it becomes an ex-parakeet – but that’s another story.

I did come up with a working solution to the ‘incredible lightness of being’ problem presented by the ‘knitted knocker’ (since I’ve not had time to check out the medical prosthesis world) – millet seed.  I weighed out an approximate amount; dropped it into the toe of a stocking (double thickness, because one hardly likes to leak) and knotted that off, leaving room in the bag for the millet to slither about as needed. Stuffed that in the bottom of the kitted knocker; loosely basted the reworked knocker into a bra to prevent downward slippage – et voila!

Ok, it’s not *exactly* a professional replacement, not by a long shot, but: it’s the right size and weight (you can get the weight of the missing bit off the pathology report or, if you’re not feeling up to reading it yourself, have a friend look for it); doesn’t ride up or slip down; the millet is small enough that it conforms to shape and isn’t particularly hard or uncomfy; and  – in a pinch! – you have survival rations or can feed the birds. Your choice.

Really, what more do you want?

Of course, if you get wet, you may start to sprout, like the corpse in the garden*, but growth is *good*, right?

I’m planning on not wearing extra padding the majority of the time –  it’s an advantage to being on the  smaller size of the spectrum, and I’ll take all the advantages I can nowadays; in the winter months you’ll hardly be able to tell what’s under all the layers anyway; never worn a bra regularly before and have no intentions of starting now; and if folks notice at all and are uncomfy, that’s on *them*  – BUT there are the times when I’ll want dress-up clothes and I’ll want them to fit and drape properly. I’ll be weeding out my wardrobe in the upcoming months – some things, lovely as they may be, simply won’t work anymore – but I’m not ready to retire *all* my fancy clothes. Doubt I ever will be.

So, for me, the knitted knocker, the eventual prosthesis, are like make-up – I want it available, and I’ll wear it for certain occasions, but I certainly can’t be arsed with these illusions on a daily basis.

I’ve not been faithful with the weekly photos, but I’ve managed a few – next post, when I’ve had time to sort through. The changes are incremental at this point, hardly noticeable (at least to my eye). Still some nerve pain from time to time, and the feeling as though I’ve a band of scar tissue across half my chest (might be a reason for that) – but, all in all, it’s business as usual.

Which is definitely a Good Thing.

 

 

*See T.S. Eliot – The Wasteland

https://www.poetryfoundation.org/poems/47311/the-waste-land

10 weeks (plus 1 day)

Keeping up with the photo documentation – this is ten weeks out, plus one day, because I forgot on Thursday. Never mind that I’m not posting ’til Sunday; it’s been a busy busy week, preparing for the Scottish invasion. That will be happening late Tuesday, and though he’s been warned the place is a tip (and it is, dear reader, it is), I’ve been doing my best to beat back the debris.

Meanwhile, healing continues.

I would have expected the central blood blister area to have lightened up more by now – I honestly expected the top layers of skin to simply sluff off and expose shiny pink skin underneath – but that’s not happened yet.

As for the central ‘dog ear’ cone of skin – hard to tell if that’s going to settle down or not. I’ve an appointment beginning of October with my surgeon to see if we’re looking at revision or not. It’s a pretty small thing, definitely tiny in the bigger picture, but it bothers me; it just doesn’t fit the aesthetic.

Rubbing the ‘spunk’ on my chest morning & night (or it gets the hose again); silicone gel sheet patches over the blood blister scar most days. The surgical area as a whole generally doesn’t hurt – most of it’s comfortably numb from the nerves being cut – but wants to stiffen and tighten up; to pull inward. Daily stretching is required to maintain range of motion without discomfort and pulling. There are occasional flashes of pain or sensations of heat, usually pretty bearable and passing in a matter of minutes. Eh, not really worth writing home about, just there; all part of the slings and arrows of outrageous fortune.

And in other news….

I’ve also got a scrip for a new breast! How very weird, to be sure. One breast, four bras – personally, I’d rather have two breasts and no bras or, given the reality, two breasts and one or two bras – but there it is. There’s a huge variety of breast prosthesis out there; different sizes and shapes and materials and so on – and they’re wicked expensive, replaced by scrip every two years or so. I’ve hoping to find one that will work for me in my normal bra (much as I have one – bras have never been my favorite things and now the constriction tends to aggravate my lymphedema); or that I can make work for me in a normal bra with a bit of sewing; one that’s closer weight wise to to original item; and one that is at least moderately comfortable to wear. I may be hoping for a lot; we’ll see.

I’m fully expecting to be amazoning it most of the time, but it’s always good to have options. I’ll let you know; I’ll have to set up an appointment at the local medical supply store – just like Victoria’s Secret, only totally different! I wasn’t terribly impressed with them the last time I had to visit (way back when, looking for a lymphedema sleeve and not finding anything that fit me properly), but hope springs eternal.

And it will – no doubt – be a blogworthy experience!

Test Results are IN!

While I don’t have the full information sheet yet, there’s apparently nothing of concern, which is Good News, though news that should be taken with a grain of salt. Between 90 and 95% of breast cancers are of ideopathic (unknown) origin, so all the genetic testing shows at this point is that I definitely don’t have any of the known genes that cause a predisposition to breast cancer.

Considering I’ve had two separate breast cancers in the past eight years, I’d say it’s better than even odds that my body has a propensity towards creating breast cancers. Tamoxifen will reduce the risk of recurrence by 50% (remember, that’s only a 6% overall risk reduction) and will reduce the risk of a new primary breast cancer by about the same percent (66% according to some studies).  The statistical risk of a contralateral new primary is 1.9%  for the first five years, rising gradually to 10.5% in twenty years (variables apply here – such as BRCA status, ER/PR status, that I’ve already had a second primary, etc. – that raise or lower the overall probability, but I don’t have that breakdown. This is an overall risk percentage, rather than my risk) so that’s a pretty minimal reality there.

So far, those are odds I’m willing to bet on. Now, there are some fun variables in my particular case – my use of ERT may increase my risk of either a recurrence or a new primary. Since ERT drastically increases my quality of life, it’s something I’m willing to gamble on – quality over quantity for me, every time.

I wrote eight years ago about Tamoxifen (https://tastethefireforyourself.wordpress.com/2011/11/04/the-troubles-with-tamoxifen/) and most of that still holds true. No worries on the uterine cancer now, of course – but the rest? I lost brain function to chemotherapy, that was a choice I made knowingly, though without knowing the severity of the loss – it was a gamble I took, eyes wide open. I haven’t regained that ground.

I’m not willing to risk losing more abilities for what seems to me a very minimal risk reduction; I’ll take that gamble of 12% recurrence rate; 10% risk of new primary. It’s a good bet for me.

Contrary to what I thought eight years ago, I don’t regret NOT taking tamoxifen; I don’t regret taking ERT. I made good choices for me and for my life – even when I thought this was a recurrence and my life span was likely to be considerably shorter, refusing Tamoxifen was not among my regrets. Neither was taking ERT.

I started as I intend to go forward – whatever happens from here on in, happens. All apologies to whomever has to clean *my* house!

 

 

Nine weeks and counting

A  few days more than nine weeks now… I’ve been released from PT; given up my blood for genetic testing (full panel; results back in two weeks or so); and received and worn my ‘knitted knocker’. The excitement never stops around here!

Starting with the last first –  behold the knitted knocker!

 

Handknitted, provided free of charge  in different cup sizes and colors (https://www.knittedknockers.org/), this is a lovely soft temporary filler – because clothes just aren’t made to fit accidental amazons, and getting a medical prosthesis takes time (and can be super uncomfy at first apparently). Stuff this into the empty bra cup and it works… well, *pretty* well.

 

Wearing a bra is not my favorite activity to start with – I’ve gotten away most of my life without one, and the constriction tends to aggravate my lymphedema – but I was willing to give it a go.  Even at my size, the weight differential causes some shifting – the original item weighed 370 grams (approx. 13 oz); the replacement is light enough not to register on the scale. This results in the bra shifting slowly up on the lighter side  – not horribly in my case, but enough to be noticeable. I’d imagine the greater the weight differential, the more prominent this issue becomes – luckily, I’m small enough so it’s not bad at all. The knitted edge also tends to peek over the edge of the bra a bit – ah, you shouldn’t have been looking down my front anyway! It’s still a good enough temporary solution for when one wants (or needs) to rock the symmetrical look.

Taking off the bra and stuffie, everything’s healing nicely – see?

As nicely as can be expected, and then some, at any rate. The central ‘dog ear’ has receded somewhat, though it’s still there and Not My Favorite Thing – I’ll see how it’s doing in another few months, and how I feel about it then.

Definitely thinking of tattoos a few years down the line, once I’m healed and allowed to start mucking around with it – I think it will ease the eye over the bumpy ground of ribs,  give me something lovely to look at. Finding the right artist to do it, and figuring out what I want will probably take at least that long anyway… until then, I’ve no problems living with it as is, odd and unfamiliar as it is.

It’s still *me*, though not part of my internal body image quite yet… give it time.

 

 

Eight weeks (aka 2 months) after

It feels as though the first phase of healing is mostly over, and now it’s settling in for the long slow haul of incremental changes. Bit frustrating, to be honest… like everyone else, I want it sooner, rather than later. There seem to be a few more twitches of pain/discomfort in the surgical area than before at this point, and I’ve not fully recharged on my energy levels (though with that, it’s hard to tell what’s surgery related, and what’s the effect of the past year of  close to constant stress – could be I’m just exhausted in general, and this was the tipping point).

Here’s what I look like, two months out:

The blood blister area in the center is taking much longer to heal and fade than I had hoped it would, and it looks as though it’ll leave pock like scars behind when it does – eh, not a big deal.

On other news, genetic testing is scheduled for Monday; the results from that will help me answer the Tamoxifen question. I’m still leaning pretty strongly away from it; all else being equal, it’s unlikely I’ll choose to take it.

At 55, given family history and barring sudden death (c’mon, super volcano! global warming! pandemic!…. or the mundane car crash or ladder fall), I can expect about 25 years more, with things generally getting worse physically every year. Suffering through drug effects for the next five (likely to be the best five physically of what remains to me), with long term permanent effects from said drug,  for a 6% overall reduction in risk – well, it just doesn’t seem like a great tradeoff to me.

Darlings, we’re all going to die one day. That scares me far less than most folks, and far less than losing more of my pretty pink cerebellum to cancer treatment.

Your mileage may vary, as always.

Seven weeks

Here’s the truth. The scar looks pretty good (IMO) when I’m stretching; a nice clean smooth line. Granted, there’s a bit of healing left to do, there’s that central patch where the blood blisters were and that’s not so pretty,  but it’s all early days yet.

I’m expecting the scar itself to fade into a clean white line; the discoloration in the central area to peel away over time, leaving little burn type scars underneath in the worse bits – all things that don’t bother me.  The ‘exit wound’ from the drain (with its two little stitch satellite marks) is hardly worth mentioning; it’s so far down my list of concerns.

On the other hand, it’s rather less than elegant when I’m not stretching. Bumpy and lumpy with my ribs and weird underlying distortions, which may or may not even out in time – it’s not as though I’ve a nice layer of subcutaneous fat to gloss the raw edges, but I’d expect some smoothing over time. The central end poking out a bit (not so noticeable in this photo; much worse in others). The inframammary crease still marking the boundary of what was. The scar nipping at my side, creating a new line, pulling in and disrupting the clean fall of flank.

I don’t like this photo. I don’t like that this is how my body looks now.  In a certain light, at a certain angle – and, to me, it’s important to show this reality as well, much as I don’t like it. It’s not pretty, it’s not elegant, but it is also the truth of the body post surgery.

 

Down the research rabbithole!

I’ve been diving down the rabbit hole of research – as much as I can stand to – trying to parse out as much information as I can.  It’s exhausting and overwhelming… first, just having to excavate what I learned from my last foray into cancer land eight years ago, and what I went through then: type of tumor, grade of tumor, Cytoxan and Taxotere; all those places I never wanted to revisit and thought I’d left behind in the rear view mirror. Refamiliarizing myself with the territory and the meta language used there; the big long term  studies and their acronyms.

Then looking through more recent studies, shuffling through the overload of information and sorting it out as best I can. What I can understand, what’s a bit beyond me; the size of the study and the length of follow-up; agonist and antagonist effects on various tissues and cells; molecular binding and transcription activities; estrogen alpha and estrogen beta receptors; knock out mice and ‘In contrast to the established role that the ERα/α homodimer is a driver of estrogen-mediated cellular proliferation and ERβ/β homodimers elicit an antiproliferative and proapoptotic effect, the function of ERα/β heterodimers in the biologic processes is the least understood.’

Basically, what it boils down – at least in my imperfect and very rough understanding – is that Tamoxifen is a SERM (Selective Estrogen Receptor Modulator) that blocks the action of estrogen on cells with ERa/a receptors, acts as an agonist on cells with ERb/b receptors, and might act as an agonist on cells with ERa/b receptors. We shan’t mention GPER, because that’s a whole other reality, and one I *really* don’t understand.

The selective action of tamoxifen (dependent on the cells estrogen receptors) is why it acts to promote bone health (and uterine cancer), while reducing breast cancer (although let’s not forget that if a patient takes tamoxifen and experiences a recurrence, their odds are much worse than if they had never taken tamoxifen – but is that causality or correlation?).

So all you have to do now is figure out which cells *where* are ERa and which are ERb, and you’ll have the start of answers and more questions…. except of course, it’s really not that simple. Not by a long shot.

Here, for example, is your brain on drugs. Specifically, estrogen:

 

 

Clear as mud, isn’t it?

It all makes it very clear to me why many people simply go with whatever their doctor recommends, without  dropping down this rabbit hole. It’s confusing and overwhelming, and any understanding I glean will be imperfect and superficial at best. Still, I soldier on…

In the meantime, in between time, I ordered up a  ‘knitted knocker’ (absolutely hate the name, but it’s a lovely program*) – I’m pretty comfortable being asymmetrical most of the time, but for those times when I want to dress up? Most clothes aren’t designed for accidental amazons –  I expect I’ll get fitted for a ‘foob’ (aka ‘breast prosthesis’) eventually; until then, this will fill the gap (as it were). Stuffing my bra – got to be a first time for everything!

*https://www.knittedknockers.org/

Six Weeks Out

By now, I’ve pretty much regained full range of motion, though with a fair amount of pull across my chest and down my side – it’s something I’m constantly aware of. Even when not stretching, there’s a feeling of tightness across the area, like a too tight bra I can’t take off, a thin cord cutting into my chest. Not horrible, by any means, but not pleasant.

The central area (the blood blister area) is improving – the scabs have finally fallen off; the skin in that area is discolored (which is likely to resolve in time), and scarred upwards from the incision where the scabs were (similar to burn scars – those may stay with me, but aren’t a big deal for me).

What’s far worse for me is a purely cosmetic concern – the central end of the scar protrudes outward in a little cone of skin; a ‘dogear’.  These are more common at the *other* end of the incision, under the armpit, and on larger bodied folks – I get to be the lucky skinny flatchested patient who ends up with one dead center of my chest. It almost disappears when I’m stretching or lying down; standing up, it pouches out; leaning forward, it’s hideously obvious.

I don’t think it’s something that’s going to resolve without surgical revision, and I’ll be looking for a referral to a plastic surgeon soon. Dammit, I can cope with the major body modification, but I wanted a *pretty* scar!

I still do.

It may seem a frivolous concern, it may even *be* a frivolous concern – there’s the whole CANCER thing, after all, and the belief that I should be satisfied with simply being alive, but it’s my body and I’ve got another 25 years or so in it: I want to be as comfortable and happy in it as possible.

I’ve been continuing to do my PT (lots of stretching and now -* strengthening* – exercises) and scar care – massaging the incision, the surrounding and underlying areas, and the scar from the drain (both with and without silicone lube) throughout the day. Once the scabs came off, I started using a silicone scar sheet patch* on the area where the blood blisters were to help that heal. Doing my best to keep up with the vitamin C and zinc supplements as well – it all counts.

Long story short: I’m doing beautifully on my physical recovery – minimal pain/discomfort; adjusting well mentally & emotionally now that I’m back on ERT; pretty satisfied with the results cosmetically, aside from the central dogear (which I’m decidedly not happy with).

Still waiting on genetic testing, and results from the bone density scan on Tuesday; still leaning away from tamoxifen, but no hard decision as of yet – I don’t have all the information I need yet, and won’t until after the results are back from the genetic tests.

* Silicone scar sheets: These are little flexible fabric, silicone backed, self stick pads you can buy at any drugstore, cut to size and slap on; a bit pricy but washable and re-usable for up to a week, and clinically proven to help. I’ve cut the full sized patch in two; put one half on in the morning, leave it on most of the day, and then throughout the night; take it off in the shower in the morning and wash it. Use the second half patch on the second day, while the first half patch dries out. Rinse and repeat.