Tag Archives: cancer

Henny Penny’s Got Nothing on Me

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I guess it’s a friend who’s “girls” give us eggs every year that brings to mind a little red hen running in circles, kicking up puffs of dust, as I look at my own girls today. The sky hasn’t fallen, but my left boob certainly has.

Maybe you can kinda see the lowerage of the left breast. The ace wrap between them is certainly evident. This "process" is NOT fun.

Maybe you can kinda see the lowerage of the left breast. The ace wrap between them is certainly evident. This “process” is NOT fun.

I wouldn’t say it’s quite an inch lower than the right, or that the world’s going to end, but I could be convinced.

In medical parlance, the lowerage is maybe a centimeter and a half. Or two. Almost an inch.

The spouse, who has eyed the “new” boobs waay more frequently than the old ones, actually agrees. And my dear friend Peggy who has walked me through the whole process, kindly says “well, maybe the one IS a bit bigger than the other.”

I don’t think it’s bigger, it’s just lower. So (feeling like the world’s worst patient yet again), I call the doc’s office. There’s not a nurse around, but one of the other lovely ladies says, “We want them to relax into their pockets. Does it feel like that’s what’s happening?”

Relax into their pockets? Gloriosky! Whoda thought? And why wasn’t this mentioned before? And why isn’t the right one doing the same thing? Or is it only a matter of time?

The next thing she says is, “Let’s have you come in (like TOMORROW) to make sure nothing odd is going on.” Nothing odd? This is odd in my book. The sky falling is odd too, but I doubt that’s what’s happening. The next thing she says is, “We don’t want the other side to be retracting and pulling up.” OK, the sky IS falling.

“Pulling up” is exactly what the right side feels like it’s doing. The one’s going down (and feels kinda nice), the other’s pulling up, and doesn’t.

So I’ve got specially constructed evening wear (see pic). It consists of a bra I’ve worn for weeks now, a roll of ace wrap in the middle that keeps the implants from cutting into the muscles attached to my sternum, and a pain patch on my skin that maybe works, maybe doesn’t.

This all because of a questionable condition called thoracic outlet syndrome on the right side. Which means the muscles there are overdeveloped, the nerves are compressed, and everything hurts. On that side only. Unless a miracle happens and the implant “falls into its pocket”. Like tomorrow.

I don’t care if my extremely patient doctor thinks I’m a nut when the miracle happens and he sees two perfectly level boobs at my appointment. Just my luck. He’s probably got that little bubble level app on his iPhone to check things out. Or something from his garage. Like the stud finder mentioned in a previous post.

I’ll let y’all know what happens. Henny Penny, too. Maybe she can stop her frantic circling and I can get some rest.

“They’re heeere…”

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Foobs.

Fake boobs.

Rising out of nothingness…Suddenly. In Biblical fashion.

The surgeons very kindly took me seriously when I said the prospect of traditional dual mastectomy horrified me. They inflated temporary tissue expanders to about half capacity before I left the operating room. So when I explored my chest in the recovery room there were these little convexities–booblets–complete with my very own nipples, right where I’d expect to find them. Mightily encouraged (this is all hearsay, mind you–I’ve no memory of it), I am said to have gleefully exposed them to anyone who’d look–the spouse, my dear friend Peggy, and whatever nurses & techs were trying to keep me breathing instead of flashing the entire floor.

So I’ve discovered an inner extrovert. If it only emerges after anesthesia, I’m good.

I was apparently good that day, as the spouse was heard to say, “Gee–it looks like you’re nineteen again!” Bless him. We won’t talk about how he knew what I looked like at 19, except to say that it involved a communal swimming pool and some self-conscious skinny dipping. There are those who will remember the ’70s & how that used to be OK. Nowadays, if I’d been much younger, there’d have been arrests.

But, nobody gets to stay 19 forever, even a second time ’round. I left the hospital with the medical equivalent of saran wrap holding my chest together. This would stay on an additional two weeks, providing increased heat within really thin skin that needed to establish new circulation, and a way to peer at the nipples–which until the surgeon told me, I didn’t realize might dry up and blow away.

So now, three weeks out from the original surgery and with regular infusions of saline, foobs have emerged from the primordial booblets. Given my profession and the profound effect words have on women’s sense of self, I’ve always been careful to give body parts their correct names–at least with patients of a certain age  and comfort level. But special circumstances create the need for new vocabulary. An email friend who’s been through the same process tells me this stage is the “foob” stage. From the Latin, of course: fake boob.

Seems entirely appropriate to me, as these have certainly passed up my 19 year old booblet moment. Booblets are cute and unassuming. Foobs, well, foobs make their own way in the world. Anyone who accidentally runs into me won’t hurt me, but might come away with some serious bruises right about foob height. Which means we’re not talking “real” breasts yet.

I’ve got another one or two infusions to go before the tissue expanders reach their limit. Or I reach mine (this is not a comfortable process). A couple months after that, once things have stretched and settled to the extent they will, the expanders are exchanged for implants that feel much more like “real” breasts. And with any luck, I’ll start feeling real again, too.

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.

Late night thoughts…

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Lewis Thomas had his, prompted by Mahler’s 9th Symphony. And I’ve got mine, though none so lofty. Mine are like: Geez–nobody looked up Amazon (previous post). Everybody’s so freaked by the damned disease that they’re going to go through life thinking Amazon mostly means

  • an online bookstore
  • a river in South America
  • a big green parrot in South America
  • mythical female warriors who lopped off a breast the better to draw a bow

Actually, if you remembered the last one from 8th grade history, you’re close to being right. Amazon translates “without breasts” from the Greek. I only know this because I’m freaked by the damned disease too, and that piece of trivia came up early in my internet wanderings. I have no idea why it seems important tonight.

My dear friend took me to lunch yesterday. She’s so emotionally intelligent, anyone lucky enough to be her patient is really lucky. She asks things like, “what do you want to have happen?” and “what scares you?” Like she’s not afraid to hear the answers. Like if I don’t know, maybe she’s got some ideas. Or maybe not. But that’s ok, because at least she thought to ask the questions.

On the other hand, I already told folks at the office that I’m not into the whole “cancer journey” thing.

“So how’s YOUR journey going?”

My darling dad, a very private man, was mortified when an enthusiastic greeter at a center for alternative medicine grasped his hands and insisted on defining this “journey” for him. He was supposed to emerge changed: “different, yet somehow better” than before cancer. Actually, he was dying. He knew it, and he hated it. As was his right. As is mine, should it come to that.

And nobody’s shaving any heads. I’ve been put on notice by my friend Pam that she’s sure as hell not gonna be bald just because I get that way. I still have a niggling hope that I won’t be. My dad used a cold cap during chemo infusions, though his oncologist scoffed. But he kept his hair. A friend who was a cancer nurse introduced the idea, said she’d seen great success with it among patients at Cedars Sinai. Well, I’m wildly enthusiastic about the possibility of keeping some hair, even if the evidence-based-medicine Grinch won’t support it.

Oh.

Please.

There will be no talk of making plaster casts. None whatsoever. Pregnant bellies are fine in this medium. Old boobs are not.