Because breast cancer survivors don’t have enough to worry about, now there’s this: the FDA reported that women with breast implants have a small but slightly increased risk of developing anaplastic large cell lymphoma (ALCL), a rare disease typically affecting 3 out of 100 million women.
While ALCL is rare, it seems that women with implants may have a “very small but increased risk of developing the disease in the scar capsule adjacent to the implant.” ALCL is a cancer involving cells of the immune system, which scars the fool out of me. Scarier still is that this immune system cancer can appear anywhere in the body. ALCL is not breast cancer, but it can show up there, or anywhere else. Thankfully it is very rare: 1 in 500,000 women a year in the United States, and it’s even more rare to develop ALCL in the breast (3 in 100 million). Whew!
And while all women with implants could be at risk, whether their implants are for reconstruction or recreation, for the purpose of this post, I’m going to focus on breast cancer survivors who have implants.
Really?? After surviving breast cancer, enduring reconstruction and getting on with life, we also have to worry about this? You’d like to think (at least I would) that as a cancer survivor, you’ve suffered enough (I know I have). But apparently there’s no end to the the amount of suffering spewed by the dreaded cancer.
I’m so sick of cancer.
One of my bookclub buddies, herself an 11-year breast cancer survivor, just had to make a quick run to Alabama to visit her “surrogate mom” at the lake who appears to be losing her cancer battle.
My beloved aunt is recovering from surgery last week to remove part of a stage IV glioblastoma. I don’t even need to tell y’all how bad a stage IV glio is. Get well soon, Thea Sophia.
I saw a story on the Today Show about a 3-year-old girl who had a mastectomy (yes, you read that right, she was t-h-r-e-e years old) for a rare but early-striking form of breast cancer.
My tennis teammate and dear friend who endured diagnosis and a double mastectomy and has completed 5 of her 6 chemo treatments is battling hard, and she is an admirable warrior. This stupid disease has changed her body and robbed her of tennis for all these months. It’s forced her to live way outside of her comfort zone and to learn lessons she’d rather remain ignorant of, all the while still driving carpool, making dinner, overseeing homework, and keeping the household running. The battle has taken a lot out of her, but she still has a lot of fight left in her. And she looks amazingly beautiful in her sassy headscarf. Chemo may have taken her hair and has tried to commandeer her brain, but it can’t take away her smile and her fortitude.
I miss my mom every single day, and every single day I curse the wretched disease that took her life, too young and too soon. I could write all day and all night and not run out of things I miss about her. Stupid cancer.
Then there’s my own cancer battle.
I’m not a candidate for implants myself, since the post-mastectomy infection that snaked through my chest wall took its pound of flesh from the right side. I thought I was getting the short end of the stick by having to endure a much more complicated surgery and recovery than that required for implants. Perhaps I was wrong. Although who knows what the FDA will find as risky for breast cancer survivors who opt for different reconstruction methods. We can’t win for trying.
The good news is that I do indeed have a surgery date (gulp). My impatience, which I blogged about on Monday, paid off, so all those naysayers out there who were going to tell me that good things come to those who wait can shut it. Thank you.
Sonia, Dr Spiegel’s nurse, called me Tuesday morning to tell me that Dr Spiegel and Dr S had a meeting of the minds and found a date that works for both of them. Gulp.
It’s March 2nd.
Texas Independence Day. My cousin Ross’s birthday (hey, cuz). Also celebrating birthdays on that day: Dr Seuss, Sam Houston, and Reggie Bush. Oh, and my new boobs.
I read an article about plastic surgery in China (you may have, too, and if so, were you as freaked out as I was?). It told the story of Wang Baobao, age 28, who has had some 180 plastic surgeries. She started with her first operation at age 16, and has 6 or 7 procedures each time she goes under.
She’s had something done to “nearly every part” of her body: she’s had her eyes widened (and more Western-looking), her nose & jaw narrowed, and her chin reshaped. She’s had fat sucked out from her hips, thighs, stomach, and rear end. She even had heel implants, to make her taller (didn’t work). She’s had her breasts done, of course, and she says, “I had to keep having operations to repair them.” Yeah, me too.
China is third in the world of most plastic surgeries performed, behind Brazil and the U.S. No data, though, on how many procedures in any of those countries are for non-cosmetic problems.
The “official” estimate is that 3 million plastic surgeries were performed in China last year. The Deputy Secretary of the Chinese Association of Plastics & Aesthetics says his hospital sees 100,000 plastic surgery patients a year, and that all of Shanghai could see 300,000 a year. Try getting a hospital room there.
However, the Deputy Secretary points out that “most people don’t have surgeries at officially regulated hospitals. Many patients go to beauty salons and other unregulated facilities.” A beauty salon??? Egads. That’s a major infection waiting to happen. Trust me, I know.
Before the economic reforms of the 1980s, people in China were only allowed to have plastic surgery to correct a physical deformity, mostly hairlip patients. Cosmetic procedures were considered a bourgeois way of life. What’s so bad about the bourgeois? Doesn’t everyone deserve a perfect physique? (says the girl with the flattest and most scarred chest in the Western Hemisphere.) I’m all for economic reforms, and think in general prosperity is a good thing for society, but when the rising tide of affluence is outpaced by the pursuit of physical beauty, we may be headed for trouble. Xi Shirong, the senior plastic surgeon at Beijing Hospital, says he sees at least 20 patients a day, mostly women in their 20s. That’s right, in their 20s.
24-year-old Wang Bei, a singer in China, died in the OR during a facelift. Can someone explain to me why a 24-year-old would need a facelift?
Back to Wang Baobao. She says the technology wasn’t good enough and the surgeons not skilled enough. One might think she’d be able to find a better surgeon, though, considering how many times she went under the knife. Isn’t that the definition of insanity: doing the same thing over & over but expecting different results? She says she kept “needing repair operations.” Again, me too. Sigh. She’s spent some $600,000 on her surgeries and says “the effects are not that good. And all over my body, there are too many scars.” Ya think?
You’d think that having a friend going through the worst thing you’ve ever faced would be a comfort. And it is, kind of. It’s also really hard and really sucky, because as great as it is to know that she truly gets what I’m feeling, it means that she’s probably feeling it too, because she’s in the trenches herself.
Does that even make sense?
It does to me, but if you’re having trouble following along, bear with me. My friend in the trenches is staring this vicious beast in the eye, going toe-to-toe with the roughest part of the “cancer journey.” (I really hate how that phrase conjures up a nature walk or space travel or anything other than what it is, which is hell. For lack of a better phrase, I’ll continue to use “cancer journey,” but I insist on taking away some of its power by using quotation marks.)
She and I had a great day together yesterday. I took her to her appointment with Dr S., which is always fun for me because I’m not the one sitting on his exam table. She was getting her tissue expanders filled, and I’m going to risk embarrassing her a little here by saying that girl is starting to become stacked (yes, I’m envious, but so so so happy for her at the same time). I also had gotten my tissue expanders filled a few times this past summer, before the *&$% hit the fan and “mycobacterium” became part of my lexicon, so I knew what to expect from the procedure.
What I didn’t expect was to get to be Dr S’s assistant. Nurse Nancy in the house! Dr S’s lovely nurse Brenda was on vacation, so Dr S told me to glove up and earn my keep. I couldn’t resist asking him if the gloves were latex-free, even though I don’t have a latex allergy. It’s not much, but it’s all part of how I drive him batty.
I’ve witnessed him bossing Brenda around plenty, and it was funny to be on the receiving end of that. We were in the midst of a heated discussion about something or other, and he started ordering me around right away. I reminded him that it’s nice to be important, but it’s important to be nice. He loved that one. Really. My poor sweet friend asked us to stop fighting and please talk about something sweet, like puppies or Easter bunnies, since Dr S was waving a giant needle around as she lay helpless in his wake.
He told me to hold the bag of saline a certain way, so he could jam the giant needle into it and fill up the king-size syringe to then insert into her tissue expanders and fill them up, and I couldn’t resist doing it the wrong way, just to tweak him. Then I realized he was pointing the giant needle at me, coming toward the saline bag, so I decided to shape up. It’s all good fun.
Before we made it into the exam room, she and I waited quite a while in the waiting area (I sure hope this isn’t becoming a trend with Dr S, because I hate to be kept waiting). We were chatting and laughing, and an older lady was watching us. She finally interrupted our conversation to tell me she liked my boots, and to ask if she’d seen me in Dr Darcourt’s office earlier that week. She and I apparently have the same oncologist and plastic surgeon. Small world! She asked my friend and I where we both are in the reconstruction phase, and we compared notes as girls in our situation tend to do.
This sweet lady shared that Dr S had done the TRAM-flap procedure on her 5 weeks ago. I said, hmmm, that’s the procedure he thinks he wants to do on me and I’d love to talk to you about that. Good grief, did that open the gates to a gush-fest on how wonderful Dr S is. This lady and her husband both couldn’t say enough nice things about him. If they said it once, they said it 100 times: “He’s not a surgeon, he’s an artist.”
That’s sure nice to hear. I’ve heard it before, actually, from lots of different people. But it’s still nice to hear. Especially just before my friend and I got called back into the exam room for her turn. It made me give him a little bit of extra grief, just because I know he’s so full of himself. And because I know it makes him nervous to know that I’m talking to his other patients. He’s asked me not to mention the whole infection thing, just in case that unfortunate event is associated with him. Easy enough, as I’d like to forget it ever happened. And easy enough because never in a million lifetimes would I ever believe that it was his fault. I’ve said before and will say again, repeatedly, that man drives me crazy but he took good care of me. The problem is that when someone asks why I haven’t started moving forward on reconstruction, as this sweet lady did, it’s kinda hard to answer honestly. I can always lie and say I’m a big chicken who can’t face another surgery, or I’m indecisive and can’t figure out which option to choose. But neither of those are nearly as compelling a story.
After we concluded our business with Dr S, we ran a couple of errands before meeting some other friends for lunch. And by “ran a couple of errands” of course I mean shopping. We were on a mission to find her a new pair of black boots and I’m proud to say that we found not only the boots but also two other pairs of shoes. I’ve written before about the healing power of new shoes. It’s a force unto itself. She and I both really believe in the power of great shoes. The rest of our worlds may be a crumbly mess, but we’re gonna face it in great shoes.
We spent a lot of time laughing so hard we hurt, and more than one person stopped to look at us and probably wonder what in the world could be so funny. She’s not the sort of person who snorts when she laughs real hard, but I am, and I did it a few times. That’s how you know you’re really laughing. I’ll bet that to the outside world, we look like two normal women: hanging out, enjoying each other’s company and relentlessly pursuing the perfect pair of black riding boots. Probably no one notices that we both have a port bulging out from under our skin, or that we have a much different profile than we used to. I know that no one can see the scars under our shirts, and the newly-etched worry lines on our faces could be from any number of stresses. No one knows that the landscape of our daily lives has a completely different topography now. Instead of just being filled with carpool and tennis and such, it now revolves around doctor appointments, procedures, and research. When we’re out in public, running our errands and getting stuff done, we look like normal people. We get through our days, cross things off our “to do” lists, and take care of our families, just like everyone else. But we do it with a heavy burden. That’s why it was so great to spend the day together, and to ease each other’s burden, if only for an afternoon.
So I have this little spot on the area formerly known as my right breast, which is now known as the right chest wall and was, over the summer, the site of a whole lot of activity. Things have been really calm lately, so I guess it was time for something to happen. This little spot popped up a week or so ago, about the time I started playing tennis again. Because I so enjoyed being back out on the court, and because I really needed to believe that I was finally out of the woods, I tried to ignore it. It wasn’t very big, it wasn’t all that red, and it only stuck out a little.
Well, if I’ve learned one thing from this whole mess, it’s that ignoring a spot in the hot zone doesn’t work. Never. No matter how hard you try. So once this little spot got a little bigger, a little redder, and stuck out a little more, I knew it was time to make the call.
I’ve gotten to know Dr S’s office manager, Marcie, and his nurse, Brenda, really well. Maybe too well. So when Marcie answered and I told her what was going on and I asked her if she wanted to ask him if he needed to see me, she said she wasn’t going to ask because we both know the answer. And yes, she does just lay it out there like that. Personally, I find it refreshing.
My next check-up with the good doctor isn’t for another 3 weeks, and Marcie said there’s no way he’s going to wait that long to see you, so get yourself on in here. I tend to do what Marcie says. Dr S, not so much, but Marcie for sure.
When Brenda saw the little spot, she made that face. That “I skipped the poker face” lesson in nursing school. That face that makes me want to run screaming out of that building and never come back. So not only did she make the face, but she said he’s probably going to want to biopsy that. Commence running and screaming.
He wasn’t in that exam room five seconds before he hollered at Brenda to get him a syringe and a needle. I said, Wait — a syringe and a needle? Why both? What are you going to do? He looked me right in the eye and said, I don’t know, but I need a needle! A this point, it was too late to run screaming from the building, but I wanted to.
He poked the spot with the needle– more than once — and then used the syringe to try and collect something but nothing came out. The spot appears to be nice and harmless. Perfectly innocent. It’s probably scar tissue, so we’re just going to watch it. Keep an eye on it. See what happens.
Works for me. I’m thinking I’ll be out of there in time to get the cheap rate on the parking. Just wanted to ask him one question though, real quick as he’s out the door.
All I wanted to know was the name of the doctor in Miami who pioneered the technique that he’s thinking of using for my reconstruction. I’ve done a little research, but not much, and wanted to make sure I was headed in the right direction.
I have a lot of questions about this procedure, and it’s a big decision to make now that it’s not as simple as tissue expanders to implants. But I wasn’t going to ask the questions right then, because that’s a conversation for another time. I just wanted to know if I was on the right track in my fact-finding.
If you missed my post on Caring Bridge a while back about the “examine the fat” game I played with Dr S not once but twice, for two times the humiliation, you’re in luck because I’ll be dadgummed if he didn’t want to play it again. And as we all know, whatever Dr S wants, Dr S gets.
(If you want to read the original post, go to http://www.caringbridge.org/visit/nancyhicks/journal/2. I haven’t figured out how to add a link to this blog so if that doesn’t work, go to the old Caring Bridge blog and look at the journal entry for October 6th).
Why that man insists of tormenting me, I will never know. But I think he really enjoys it. Just as I’m wrapping my head around yet another change in the game plan, from TRAM-flap reconstruction to this new Brava technique of building new boobs out of fat that’s been relocated, he throws me another curve ball. Now he’s thinking that maybe the Brava technique isn’t the right option for me after all. Maybe we need to re-visit the TRAM-flap, which means he needs to pinch an inch and see how much building material I have.
I said uh-uh, no way, not again. We have done this twice and I’m still recovering from the humiliation. I’m not doing it again. He didn’t go so far as to say he doesn’t remember, but that’s my suspicion. I guess I should be flattered that my fat is so unremarkable as to render him striken with amnesia not once but twice, but I’m too wrapped up in being humiliated, again.
That man doesn’t take “no” for an answer. I said it repeatedly, and y’all know I’m no weenie when it comes to making myself heard. I told him politely then with some choice words that I wasn’t going to show him again. His response: Come on, it’s not like I’m a stranger.
THAT’S THE PROBLEM! Once you lose the “stranger” status with your doctor, you move from clinical to personal, in a hurry. I know this man too well and have quite frankly been through enough already and really shouldn’t have to suffer yet another indignity.
However, knowing him as well as I do and having been through as much as I have with him, I know the fastest way to get through the unpleasantness is to just, well, get through the unpleasantness. And that’s how I found myself once again playing the “examine the fat” with Dr S.
And guess what? The result was exactly the same: He scrutinized my belly and said there’s probably enough to make a B-cup. But only on one side. I said, I know you think I’m really demanding, but I insist on having a matched set. We had previously discussed the idea of doing the TRAM-flap for one side, and using an implant on the other side, but I said then and said again that I don’t want to do that. Just seems like asking to be lopsided at some point down the road. He actually agreed with me, which scared me just a little.
So he seems to be leaning toward the TRAM-flap again, and away from the Brava technique. He gave me the website to research, I said, ok fine, we’ll talk about it later. And I thought I was out of there.
As I was checking out with Marcie, though, he called me into his office. It’s not quite like it was being called to the principal’s office as a kid, but a little disconcerting still. He’d pulled up the website and wanted to go over it right then & there. I didn’t even want to think about how many patients were waiting for him.
So we looked at a bunch of photos and I was quite underwhelmed with the results. Maybe it’s because I was perfectly satisfied with the set-up I had, pre-mastectomy. I’ve explained that to Dr S before: that while he does amazing work, and the majority of reconstruction patients whose photos I’ve seen look way better after than they did before, I was just fine where I was. So the “new boobs” as a prize for going through breast cancer, mastectomy and reconstruction isn’t a big draw for me. Excuse me for being underwhelmed.
As if I’m not confused enough at this point, he introduces yet another option: taking the muscle from my back, under the shoulder blades, and using that to build the new pair of goods. We looked at some photos of that, too, but I had one question: how would that affect my serve? Seems to me that slicing the muscle away from an area that is used to torque the body and generate force while serving the ball means bad things for one’s game. I’m not going through life with a permanently wimpy serve. I’ve suffered enough.