Tag Archives: angelina jolie

I’m wounded and can’t get my bra off.

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Anyone tired of pain and angst and wimmen’s stuff can go home right now. But I can’t get off this bus and writing’s a distraction, so I’m gonna stay right here and bore y’all to death.

I’ve taken the muscle relaxers (the ones that cause 6 hour crying jags). And the lorazepam (goody, now I get to wake up feeling like the world’s going to end). I’ve got one NSAID pain patch plastered to my front, another to my back, and my husband nearly broke his thumb trying to push the muscle spasm or rib or whatever it is that hurts like hell back to where it came from.

Ain't it cute? Don't it look nice and soft and squishy? Nawp. They lie. And where's the stud-finder, dammit?

Ain’t it cute? Don’t it look nice and soft and squishy? Nawp. They lie. And where’s the stud-finder, dammit?

So I lie on the “Miracle Ball” for the requisite minutes and then do it again out of sheer desperation. Now I’m sitting against a yogic torture device called a Spoonk that’s advertised as the Western answer to acupuncture. All this because I’ve got what feel like armadillo plates riding against my ribs and the suckers are pulling my back out of joint.

And I still don’t have to do chemo. Yay! That heads up my gratitude list every day of the week. But tonight I’m doing my best imitation of British whinging, just for fun.

Actually, the anatomic explanation above isn’t quite right. I quizzed my plastic surgeon about exactly where these tissue expanders live and learned they aren’t just lying quietly on top of my ribs “under the muscle,” as I so casually assumed. During surgery the pectorals are actually butterflied lengthwise, their points of insertion left intact, and the expanders jimmied between the layers like stuffing in mock duck.

All’s quiet for awhile (or else surgical pain overrides awareness of anything else), but a couple weeks later, when they whip out the stud-finder to start filling the expanders (see previous post), the muscles stretch and spasm. And in my case have pretty much never stopped. I wake in the morning with the equivalent of tennis balls stuck under my skin. That’s if I slept at all overnight. I don’t remember having any dreams at all during these last two months. Once things quiet down I should have quite the cinema line-up for REM sleep.

So maybe the surgeon’s right and I have what he calls “reactive” pectorals (he is a pretty smart guy). You mess with them, they kick back. Like the frogs’ legs my mother once made me watch her cook. I see this fairly often during cesarean section; we’re not anywhere near the pecs, but similar slabs of muscle in the abdomen can do the same thing. It’s usually handling the peritoneal membrane underneath them that causes spasm and vomiting even with adequate anesthesia, but in some folks “just” pulling apart the abdominal muscles produces the same effect.

Trouble is, these suckers are STRONG. There is no denying a pissed off pectoral. Because of where they are, they pull on the ribs and yank those circumferential items slightly off-kilter, causing spasm in other, unforeseen areas. Which has been my problem lately.

This is more like it. The deflated inflater. More like what I just got at Petco--a dog toy with "squeakless technology." Yep, that's what this thing is.

This is more like it. The deflated inflater. More like what I just got at Petco–a dog toy with “squeakless technology.” Yep, that’s what this thing is.

My husband was horrified to find thumb-shaped bruises where he’d been pressing on my back. I assured him I’d not complain to authorities, as this was likely due to my using twice the recommended number of non-steroidal patches (along with a handful of naproxen, if truth be told). This all messes with blood clotting abilities. Whereupon he’s horrified I exceeded the recommended dosage. Whereupon I’m amazed that we’ve been married lo these 23 years and my MO still surprises him.

Now something I forgot to mention is the saving grace of having a physical therapist who really knows her wimmin’s business. Also high on the gratitude list. Every whining complaint I’ve thrown at her has been no surprise. She’s heard it all before. Thank heavens.

Thank heavens I’m not the only one who feels these plastic things getting hot against my chest wall. That the saline ports are hard, and hurt. That tissue I’m told has been denervated may be numb-ish to the touch on the outside, but has plenty of sensation pushing through from the inside.

But hey, Dr. Susan Love says says most women don’t even finish their pain meds. Must be true, right? She’s written a fat book about everything breast. If Marcus Welby, Dr. Quinn, and Hawkeye Pierce joined her for a focus group and came to the same conclusion, well, maybe I’d suspend disbelief. We’ll just not consult Dr. House.

Thank heavens the therapist knew to insist I request a reduction in the bigness of these things before I had more trouble with an already compromised right hand (that would be from the heartbreak of thoracic outlet syndrome, which is a wastebasket diagnosis and doesn’t really exist, as we all know). As soon as they let a little–a measly 2 ounces–of fluid out of the right breast my hand stopped its neurogenic tingling, my breasts regained just the eensiest bit of squishiness, and I felt like a new person. This is what I’m told will happen when the expanders are exchanged for “real” implants. We’ll stick with the smaller size, thanks very much.

But now the pecs have caught on and decided to take up the slack. Hence the new muscle spasms and this new-ish rant of mine. Bear with me and I’ll apologize (again) next I see you.

What follows is something not for the faint of heart: placement of the expander within the muscle.

I really don’t want to freak anyone out, but can’t seem to post the link without opening the graphics.

Treat your children well…

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I don’t know what I was expecting going into this Angelina Jolie-breast-preservation-mastectomy thing. Or maybe I do, if I get honest. I think I was expecting to look and feel pretty much like I did before the two, Two, TWO surgeries in one. Yeah, the Wrigley’s gum commercial dates me. I’m speaking of mastectomy followed immediately by “reconstruction.”

I’m feeling stupid because I let myself believe reconstruction meant restoration. They’re not the same. I’ve got what pass for breasts (very nicely, under clothes), but are really nothing but foobs (fake boobs, previously discussed). Kinda awful to look at without the clothes. They’re shaped by triangular-ish plastic inserts with a port for sequential infusions of saline. They could be made really, really big if I was into that sort of thing and wanted to lose the use of my right arm. More on that in another post.

And you know how they find the port to do the infusions? (Boy, what an education this has been.) With a stud-finder. Now that got my husband’s attention. He has mostly averted his eyes from the foobs, but pull out that stud-finder and he’s Johnny on the spot. It is kind of interesting. The expanders can shift, and they do, so the ports have metal in them to help with detection. Out comes the stud finder, for every infusion. First to “X” the spot, and again to check right before they stick the needle in. My doctor’s stud-finder is blue.  Hmmm.

Wall sculpture

Does she, or doesn’t she?

Weird as it is, the process works, even if the result doesn’t look quite right and the “foreign body sensation” means they’re always on my mind. Always. It’s like having something in my eye. I feel them moving against my chest wall, and I can’t keep my hands off them. I’ve had to tell my husband to poke me if he sees me holding my chest in public. The edges of the expanders wrinkle and flex just like an IV bag. Or a flattened beach ball. The ports feel exactly like the squeaker in a dog toy, only harder, and the right one hurts from the inside when I lift something and my pecs flex. You wouldn’t believe all the little things we do without thinking that require pectoral muscles. Opening a mayonnaise jar, for one.

In the mirror (and I’m always looking in the mirror), I’ve got mounds. And that’s what they’re called in surgical parlance. “Breast mounds”. Don’t know how I feel about that. I get the mental image of a bunch of men in lab coats thoughtfully considering the desirability (in one way or another) of various breast shapes and how to achieve them. I joke with the nurses that in terms of shape, my left one is Mt. Ranier and the right one, the one that gives me trouble pain-wise, is Sugarloaf. I actually like Sugarloaf better when I look down and compare the two, but they’re certainly not the breasts I’d grown to know over time. The ones the surgeon frowned at for their degree of ptosis (read sagging).

I was never taught to appreciate what I had while I had it, as I imagine many of us find, plodding through life. In the words of that gawdawful song, “you don’t know what you got ’til it’s gone.” I’ve got old photos that catch half of me sitting naked on our porch in California (because that’s what we did in California), and wonder why the hell I ever hated my little booblets. Or my not-quite-flat stomach. Or my skin that wouldn’t tan. They were fine. They were lovely. But nobody told me so because that’s not what’s done in our world.

In our world–the world of women anyhow–there’s always room for a lot of improvement. And when I was  kid, I was one of the many victims of the depression-era hangover that said children shouldn’t be encouraged. Certainly not about body-related stuff. The closest I ever got to a compliment from my mother was, “there’s nothing wrong with you–you’re not deformed.” This in response to my teenaged despair about never finding pants long enough outside the boys’ section of the store.

My dad was better, always ready with a “don’t you look nice” at odd times and when I got dressed up. Much of his life was spent around female models, and he did them the favor of always being professional, never making comparisons, and as I mentioned in another post, never “improving” on them in paint or bronze. He also didn’t make the mistake of being afraid to include me in his life or touch me once I reached puberty.

I’m glad I took photos of myself before surgery, because even at 53, even with “ptosis,” my breasts were still lovely. Not because they met media criteria, but because they were mine, they were intact, and I was used to them. And for most of my life they weren’t diseased.

These new things, these foobs, aren’t mine yet. I’m reminded every time I lift something that they aren’t breasts, they’re pectoral muscles. They clench. They spasm. They can be seen doing so under the skin. My skin is stuck to them. But only just. Skin without fat under it is thin. Transparent, really. Foobs are a constant reminder that man cannot improve on divine intent, evolution, or whatever it was that got us here.

But I’m going to have to develop some affection for these poor, benighted things, as they’re being asked to do what muscles were never meant to do–masquerade as fat. And I’m going to have to do all the exercises the physical therapist prescribed if I hope to get strong enough to stay up all night and catch babies.

The plastic surgeon tells me I’m not a “high needs” patient–the kind we health care providers all know and dread because they can’t be helped–yet I certainly feel like one. I’d kind of like to be one. I have no reason to keep going to his office,  but the support from the nurses there makes me miss having an appointment every week. What a catch-22. Something helps, yet availing myself of it feels wrong, or weak, or…well, just weak.

Foobs aren’t exactly trouble-free. I still have pain when I first wake up and the continental plates shift across my chest. Then there’s the end of the day when I just can’t stand myself any more. Fatigue hits like a ton of bricks when I’ve simply pushed a cart around the grocery store. My brain functions like Swiss cheese. Honestly, NOBODY would want me delivering their baby right now. But I feel like I should be better than this. I just know my friends would be stronger–they’d be done with it all and probably back at work again, ignoring the fatigue. Like midwives always do. Like women always do.

It scares the hell out of me, but I’m going to do the polar opposite of what my work ethic wants. I’m staying home until all this is over with. You’re all invited to join me.

Surgery sucks.

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Except when it saves your life.

But it’s awful in ways having my appendix and gallbladder out 20 years ago weren’t awful. Those surgeries felt like dental procedures in comparison. Of course, there is the thing about being somewhat younger back then. And the thing about once the last stitch is taken out at the two week post-op visit the deal is done. Finito. Fini.

None of that now. I’m already at the two week mark, but listen to me whine. Talk about being blindsided. I went blithely into surgery with my previous experience, expecting more of the same. Oh, maybe I’d use my time off for actual recovery and not plan any camping trips (I mused), but I had no real thought that things would be markedly different. After all, they weren’t even opening a major body cavity. Silly me.

In the be-ribboned world of breast cancer, I’ve won the lottery in several different ways. I don’t need anyone to tell me that. I deeply appreciate having found it in time enough that I’ll likely not be another woman trying to “live” with breast cancer until she can’t any more–often for less than five years.

Because a very experienced and persistent radiologist saw something that could hardly be seen, followed it up in slap-bang fashion with a series of biopsies that proved what he thought was there, leading to an MRI that showed something suspicious in the other breast, the decision to have bilateral mastectomies was a no-brainer. Waste time fishing around on the other side just to prove the “concerning” spot was indeed concerning (and what if it gets missed–the worst of it just micrometers outside the sample, or the real bad spot is just too small to show up…yet?), no thanks.

And because of his persistence and the expertise of his colleagues–the radiologists who nailed the lesions with their fancy x-ray guided biopsies–I get to go ahead with the plan to inflate the tissue expanders that were placed under my chest muscles rather than default to chemo or radiation and let cosmetics be damned. As it turns out, both breasts had cancer, invasive sorts of different types–a veritable smorgasbord of cancers and pre-cancers–but none was in my lymph nodes, nor in the little arteries and veins that course through the breasts, nor near enough to nipple and skin that I’d need those removed as well.

So. Onward. Stiff upper lip and all that.

Waitjustaminute. Not quite yet. I’ve got drains draining and pain paining, and have hit my wall for today. In other words, I am not feeling at all like doing anybody’s happy dance. I’m hoping against hope the appointment come Monday wherein they begin expanding the expanders and (hopefully) pull out these !#%! drain tubes will relieve some of their associated discomfort.

Discomfort. Now there’s a word. The expanders are flat things that resemble the stingray that killed Steve Irwin. The edges are thick, bump into each other through the muscles over my sternum, and slice upward into my armpits. The swelling associated with all this bumping and grinding gives me a bustline like Tarzan’s and the discomfort plays hell with my attitude.

Do you a favor. I won’t even get into the drains.

Until next time. Maybe.

It’s my party and I’ll cry if I want to…

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So I spent the last two days trying to take a friend’s advice. “Quit feeling sorry for yourself and write something interesting.” He was a little more tactful than that, but I got the message.

I did try, honest. He even gave me a good jumping-off point: my original mission statement for the Situational Midwifery blog–a soapbox about things encountered as a midwife. The things that piss me off about women’s health care. About how nothing has changed much under the sun. How women and their problems are often blamed for, well, women and their problems.

I’ve got half a lifetime’s worth of subject matter, but right now that’s not not exactly what’s rising to the top. Go ahead and look forward to future harangues, but for now they’ll be about my own stuff.

Participation is optional. Nobody is required to read a blog. I haven’t been a professional writer for more than half a lifetime now, so for all I know, it’s crap. Or it’s crap to men, or it’s crap to folks who haven’t faced something similar. I’m ashamed to say I’m one of those. I got so tired of my mother’s crying jags and worries and photos of grotesque surgeries that I was nowhere near as sympathetic as I might have been. At 15 years old. So I understand that point of view, too.

So read on, or not. Part of what I’m learning these days is to stand up for myself. My friend has given me yet another opportunity to do so, even though I’m afraid he’ll take this the wrong way. If I never hear from him again my husband (who loves this guy), will be really pissed. Then I’ve got two problems.

Sh*t.

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I hate having meltdowns. So I had two on Sunday. Sort of because my neck was killing me and Tylenol doesn’t cut it. And the chiropractor wasn’t in (lazy sod).  Retaliated by eating three ice cream bars. That helped. Then I got proactive and watched “Mastectomy and You”–the DVD my surgeon assigned. Like I get brownie points for  writing a book report. Or returning it on time. Like the stupid thing’s gonna help.

Should have been more protective of my mushy mind. Choose one source of information and stick to it, I say to my patients. Do I take my own advice? Noooo. The DVD pics bear little resemblance to the ones the plastic surgeon showed me. Not that they’re so bad, they’re just not so good, either. Hence the meltdown.

I swore I wouldn’t cry. Years ago Mom cried enough for both of us, wasting months wailing about which lifesaving procedure would, in fact, save her life. That she had months to waste should have been a clue. Her diagnosis was DCIS–now considered a high-risk precursor, but not cancer itself. Eligible for lumpectomy. In the 70s they didn’t know that and didn’t seriously offer anything other than modified or radical mastectomy. Didn’t offer reconstruction, much, either. If they did, it wasn’t until years after treatment, once survival was pretty much guaranteed. The fear was that reconstructed tissue and thick scarring might make a deep recurrence nearly impossible to see. Misogyny and concern rolled into a tight little bundle. And utterly believable as far as my mom was concerned. Lop off her breasts and replace them with something that could moot the whole point? No thanks.

Lord knows things have changed, and I’m grateful for it. Scoop out the offending bits and deal with the rest later. Unseen recurrence? Not likely. Leave the hospital with something that hurts, but pokes out instead of in? Priceless.

Mom and I were different in lots of ways. I guess every one of us is. After seeing those godawful mastectomy scars every day after my 15th year, the decision was made loooong before I was ever diagnosed. My best friend got leukemia. Possibly an infinitely worse diagnosis than mine. Ended up with stem cells, a stroke and a bald head. She rocked that look. Mom and her concave chest? Not so much. My aunt (her younger sister) didn’t even want to try it. Diagnosed two different times, she was stuck with two different reconstructions because silicone wasn’t on offer the first time. Her words to me? “Just do it.” No matter what the technique, just do it.

And her advice, I’ll take.

Hot diggity!

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Wow. I didn’t expect to be giddy with relief after the surgeon’s appointment today. Like Cinderella at the ball. Or Dorothy home in Kansas.

The three page birth plan is back in force. There will likely be no chemo. And probably no radiation. My hair won’t fall out and my skin won’t peel off. I won’t feel like I’m dying in the midst of “treatment.” Nobody batted an eye at my request for skin-sparing bilateral simple mastectomies and immediate reconstruction (the first steps of it, anyhow). The incisions are small, and the procedures will be done by folks I trust. All my externals will be left as they are–maybe even with some sensation. My friend Michelle just messaged me about the “awesome new rack” I’ll get for my troubles. LOL. I’ll be happy with just short of normal.

All the arcane testing done on my cells says they haven’t gone nearly as awry as “invasive” breast cancer implies. Chemo won’t work on “non-HER-2 expressors.” Or those with a “low Ki-67 proliferative rate.” Am I the only living woman with an urge to thank an under-acheiving cancer mutation? Mom viewed my decision to become a nurse as evidence of mediocrity. Well, hoo-yah!

We shall see. The above changes if it turns out some pesky cancer snuck into my lymph nodes. That will be determined with surgery and could require radiation. But by then I’ll have the expanders-soon-to-be-implants (yay silicone), and there’ll be no going back.

…I got to reading that last sentence, and realize there are friends and patients I know who’ve had a terrible time with aggressive cancers and all the misery chemo implies, as well as postoperative complications that require going back to the beginning and starting all over again. In the face of all that, my giddiness may well feel selfish and downright insensitive. I apologize. I’m enjoying the moment, though, and trust you don’t begrudge me that.

Now we are Amazon (look it up).

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Guess I had my meltdown earlier this week, before any actual diagnosis. Am just kind of dull right now. Stayed home from work Tuesday and nursed the biopsied breast. Like any good patient ignored medical advice and got in the bathtub–what the hell, right? Dripped pissed-off tears into my lavender bubblebath and sort of got over it, but really wished I didn’t know what I knew. In a fit of solidarity the radiologist showed me the films. It was patently obvious with fancier imaging that what couldn’t be seen on mammogram was right where they thought it would be. Dunno how he found it in the first place. The regular mammogram looked pretty regular to me.

So yesterday one of my partners gave me the news. I’m so sorry to have burdened her with that (she looked more miserable than I felt), but I decided to have the breast center CC the report to our office. Through long experience I know the much-vaunted primary care system isn’t going to call me any time soon. No word from that quarter until last night. A sotto-vocce reading of the report by a minion who wasn’t comfortable doing it. Wonder how she’d have handled it if I was a layperson and she thought I didn’t know the words?

“Invasive ductal carcinoma…features of LCIS and DCIS.”

I’d be more optimistic about what they didn’t find (a really “aggressive” cancer) if there hadn’t been a another biopsy yesterday. This one, sampling calcifications further out, was also positive. So my fantasy of joining Angelina Jolie for a subcutaneous mastectomy and immediate reconstruction flutters to the floor. Sorta like the three-page birth plan. If I’m smart, I’ll take my patient Jamie’s advice (she’s nearly due with her first baby), and “just show up” for the event, leaving the rest to the professionals. Well, I’ll try, anyhow.