Two pieces of news today, all contained in one handy-dandy post. First, this comic made me laugh, even though it’s not applicable to me since I need both sides. Luckily, I don’t have to save up for one or both sides. Thanks to the Women’s Health and Cancer Rights Act of 1998, it’s covered.
So for those litigious souls out there who’ve pestered me to “make sure the doctor/hospital/insurance company/orderly/mammogram technician/parking booth attendant/janitor pays to clean up the mess that infection caused,” you can rest assured that I’m getting what’s owed me, so to speak.
Yes, people have actually said that to me. That I need to make sure somebody else pays for what happened to me.
If only it were that easy. Or if only I were that shallow, or had the energy to try and create a lawsuit, then all my troubles would be over.
I don’t hold anyone responsible for the post-surgery infection any more than I hold the sun responsible for rising each day. Some things just happen. Yes, I know there’s a scientific reason for the sun rising, something to do with the pull of the tides or the rotation of the Earth or some such phenomenon. But that’s not nearly as interesting or titillating as ambulance-chasing lawyers drumming up skeevy lawsuits.
If not for the Women’s Health and Cancer Rights Act, I’d be calling Jim Adler, the “Texas Hammer” real soon. The “tough, smart lawyer.” I bet he could get me top-dollar for my medical misfortune. But I’ll leave him alone for now and let him focus on the important cases, like the nasty 18-wheeler wrecks in the middle of the night.
Thanks to the WHCRA, a federal law says my insurance company has to pay for my reconstruction. The law refers to “mastectomy-related services,” which sounds a lot more exciting than it really is. Wonder if I can campaign to make mani-pedis part of the “mastectomy-related services.”
I first heard about the WHCRA while reading Promise Me, by Nancy Brinker. She’s Susan G. Komen’s little sister, who made the promise to her dying sister in 1981 that launched the global breast cancer awareness movement.
Thankfully, “breast cancer” is now a household term instead of a shameful secret, as it was in the past, and health insurance companies can’t deny the coverage required to fix the problems that breast cancer surgeries and treatment create. I could fill this entire screen with facts & figures, befores and afters, thens and nows, of breast cancer. But instead I’m thinking about the WHCRA.
Because of the WHCRA, I don’t have to worry about whether I can afford to clean up the mess that breast cancer (and its bad-news friend, the post-surgical infection) created. I don’t have to make a t-shirt that says “Will Work for Boobs” or wash dishes at Dr S’s house in exchange for my surgery. As if being diagnosed, going through surgery and dealing with the infection weren’t enough. I’m so glad I don’t have to sing for my supper as well.
The second piece of news is pretty important. Maybe not as important as the WHCRA, but only because that affects a whole lot of women, and this bit of news affects me and me only.
Today, Monday, February 28, 2011 is my 200th day of oral antibiotics.
Yes, you read that right: I have been on oral antibiotics, twice a day every day, for the last 200 days. Bactrim and Minocycline, also known as “these damn drugs,” have been my constant companions for 200 straight days.
I’m not great at math and am too old to waste time trying to get better at things that are useless, and for me, trying to get better at math is useless. It’s just not going to happen. I know I should believe I can fly, touch the sky, be whatever I want to be or some other such drivel as churned out by Mariah Carey and the like, but I don’t believe I can get better at math, and frankly, I really don’t want to get better at it. I’d much rather spend my limited time and energy on other stuff, like playing as much tennis as humanly possible.
But if I were better at math, I would be able to say what percentage of an entire year I’ve already spent on oral antibiotics. Oh, never mind; who cares. Let’s just suffice to say that 200 days is a really, really long time, and if you think otherwise, I don’t want to talk to you. Ever. Or at least until I get off these damn drugs.
If you want to know why I’ve been suffering this cruel & unusual punishment for so long, read this. I just can’t explain it again; I’m too exhausted from trying to do that math and figure the ratio of time spend on these damn drugs verses time not spent on them. Well, here’s the Cliffs Notes version of the story: I got an infection from the tissue expander on the right side after my bilateral mastectomy on May 13, 2010. The infection was (is?) tricky and was hard to diagnose, but we finally learned, in mid-August that it was a mycobacterium fortuitum, which is a wily little bugger that is insidious and hard to kill. The most powerful weapon against this bug is two different antibiotics taken twice a day for a very long time. Like forever.
200 days is a blip in the universe of long-term drug therapy. Every time I feel sorry for myself for still having to take these damn drugs, I remember my infectious disease docs chuckling softly and shaking their heads at my pitiful temper tantrum and infantile whining about why I still need to be on these damn drugs. They tsk-tsk me and handle me with the kid gloves I require of them, then sweetly remind me that many of their patients are on antibiotics for 2 years. 2 years. I’m no math genius, but I’m pretty sure that’s longer than 200 days.
Ok, so a little perspective is good, but still, I feel the need to mark the 200th day of twice-daily drug therapy. Judge me if you must, but consider this: there’s more to taking these damn drugs all this time than meets the eye. Think of the numerous trips to Walgreens to pick up said drugs, along with the other prescriptions I have to take, and the fact that none of them start on the same day, so one of them always needs to be refilled. Thank heavens my sweet oncologist added me to his personal pharmacist’s home delivery service, and now the FedEx man brings these damn drugs right to my front door, all at once. I’m sure they miss me at Walgreens.
There’s the sheer volume of pills I’ve swallowed. Twice a day every day for 200 days is a lot of pills. Again, I’m no math genius, but wow that’s a lot of pills.
There’s also the stress of remembering to take these damn drugs twice a day every day. It’s such a habit for me now that it will seem strange to not be doing it, when that day comes. Strange, but wonderful, too. I can’t wait. Actually, I can’t even think about it because I don’t want to consider how many days I will have been on these damn drugs by that time. But you know I’m going to be counting, right?
And then there’s the issue of what foods don’t mix with these damn drugs. Can’t eat dairy products for an hour before or two hours after I take these damn drugs, because dairy can inhibit the drugs’ absorption. If I’m going to go to the trouble to take these damn drugs, I certainly want them to get into my system and fight that mycobacterium.
And last but not least, there is the scorched earth tendency of the antibiotics to kill the good bacterium in my tummy, along with the bad bacteria elsewhere. I’ve gotten used to the near-constant morning sickness that comes with 200 days of these damn drugs, but I still dislike it. A lot. When the extreme nausea comes to call, no matter what I eat or don’t eat, whether an hour before or two hours after, I feel rotten. And don’t tell me your hard-luck story of how you had morning sickness every single day of your pregnancy, because at the end of that pregnancy, you got the best prize ever: a baby. Well, depends on the baby, I guess; some of them aren’t such prizes in the early days. Maybe the best prize ever is a puppy. To some people.
So by golly, I’m gonna celebrate having made it through 200 days of these damn drugs.
We highlight a president’s first 100 days in office, with either a favorable or scathing review of the job he’s done thus far. If our country can create a tradition based on a mere 3 months, I am well within my rights to celebrate having survived 200 days of these damn drugs. And since we all know it’s 200 days and counting, with nary an end in sight, I certainly will celebrate this milestone. Right now. Today.
I don’t know if it’s a nationwide tradition, but at my kids’ elementary school, they celebrate the 50th and the 100th days of school. Kindergarten especially makes a big deal out of these milestones, as well they should. Macy invited me to come to one of these celebrations and even talked me into wearing matching poodle skirts for the ’50s theme. And celebrate we did! A lot of those little kindergartners probably don’t know from one day to the next whether they’ll make it in the dog-eat-dog world of all-day school. No naps, no crying allowed, curriculum requirements that increase every year; it’s a jungle in there. That’s why they make a point to celebrate the milestones along the way, like the 50th and the 100th day. Why isn’t there a celebration for the 200th day of school, like there is for my 200th day of these damn drugs? Because the kids only go to school 180 days total each school year. So I’ve been on these damn drugs longer than the number of school days in an entire calendar year. Egads.
Ya know how we just watched the Super Bowl a few weeks ago? On February 6, to be exact. Well, on July 20th of last year, the media outlets that handle the infamous Super Bowl advertising spots were counting down 200 days until the big game. So in July, they’re thinking about selling ads during the Super Bowl, which won’t be played until February. End of July to first of February. 200 days. Curiously enough, on July 20th of last year, when the media hawkers began the countdown, I was in the hospital, for the second time post-mastectomy, with the infection.
Another significant stretch of 200 consecutive days of anything is the so-called 200 Days of Dread: a period from the spring of 1942 to November 3, 1942 in which Germany’s Afrika Korps under General Rommel marched toward the Suez Canal and Palestine, causing Jewish people there considerable and understandable stress. Not to minimize the significance of this event in World History, but yes, I’ve been on these damn drugs as long as the Afrika Korps threatened the Palestinian Jews.
And guess what? I haven’t missed a single dose of these damn drugs in all of the 200 days. Not one dose. Surely there’s a trophy for that.
So it’s Sunday morning, I’ve got my coffee to quell a roaring headache (from the pollen and not the champagne that Mr Cremer pours with a heavy hand. I love a heavy pour). I should be pulling everything out of the pantry and organizing it (again) in a manner that will make it easy for the little people who live in my house to find exactly what they need the precise moment in which they need it, because I’m gonna be parked in a room at the med center for a while and unable to do their bidding.
Once I finish that, I need to gather up all the laundry in this house and wash, dry, hang/fold it all and return it to its original home in each recipient’s dresser and closet, then try to convince those recipients to wear the exact same clothes (turn ’em inside-out if you need to for variety) for the next 3 days so that when I leave the house for the hospital, the chore I really hate will remain completed for more than 2 hours.
I still need to put away the groceries I bought yesterday (I already put the perishables away, as soon as I got home, so don’t worry about spoiled milk and moldy cheese). Then I need to clean out the fridge and discard anything that won’t get eaten while I’m gone so it doesn’t confuse the folks who try to eke out a subsistence in my absence.
One of the big tasks hanging over my head is to sit down with the calendar and make a master schedule of all the events I will miss in the next little while, to ensure that the kids get where they need to be and that Trevor and my dad (who’s coming to help run herd on my little calves) know who’s coming and who’s going. Also need to take a peek and see what events are upcoming for which I need to stockpile, be it a birthday gift or card that needs to be readied.
Instead, I’m getting ready to go play tennis and scratching my head at one of the weirdest stories I’ve ever come across. No wonder I can’t get anything done; this is all-consuming.
If you missed this story on your local news, you must read it now. Thanks to Amy Hoover for calling my attention to what is by far the craziest story I’ve heard in a long, long time.
It will take you 30 seconds to read it, maybe a minute if you slow down to read thoroughly and fully digest all the details, unlike some of us who skim wildly to find the juiciest bits.
I don’t even know where to start with this one. I’m glad the story was so short, because there are so many points on which I’d love to wax poetic. But where to start?
Ok, I’ll start with the woman’s photo. My first thought was, I sure hope she was driving to the hair stylist’s because she needs to touch-up her color right away. Yikes! I haven’t seen roots like that since Macy pulled the world’s biggest tap root out of our flower garden last summer. I mean, that sucker was as tall as Macy. And now this woman’s roots rival that super weed.
Next: her ex-husband was in the passenger seat, as she’s driving to meet her boyfriend AND grooming herself for said meeting. Huh??? Presumably it was her car, since the ex was in the passenger seat, so why was he going, too? I could see it if he were dropping her off, but what in the world was he doing in the car? And more importantly, what was he going to do once she got to her boyfriend’s house? I’m assuming he knew what activity she was engaging in at the same time she was driving a car, so why didn’t he tell her to pull over and let him drive so she could finish her other task.
Moving on: she’d been busted the day before this insanity for DUI and driving without a license. So driving while shaving her nether-region is what she does while sober? Holy tequila shots, what does she do while drunk? That must be a whole ‘nother story. Probably much longer. And crazier.
And finally: the woman and her ex drove a half-mile after the crash and exchanged seats; ok, I can see how that makes sense in the mind of someone crazy enough to do what she was doing. But my question is: if the officer had witnessed a similarly insane situation, why on earth didn’t he share that one, too?
Now I’m really curious.
I wish I knew how to make this blog play music. I bet it can, since I’m pretty sure it’s smarter than I am, but I haven’t figured it out yet. I need a jazzy yet foreboding score to set the scene. Think Star Wars theme song combined with Indiana Jones theme Song with a little West Side Story mixed in.
I knew this was going to happen. I was partly dreading it, but a little curious too to see how it would play out. It played out, all right, and yesterday by 10:30 a.m. I was exhausted by it. Thanks to a beautiful bottle of Vueve Cliquot that Trevor presented at dinner last night, now I’m over it.
But it’s such a great story, I must share.
Those of you who’ve been along for the ride since this summer, when I was updating my trials & tribulations via Caring Bridge, know that I have an especially close relationship with my plastic surgeon. I’ve written a lot about the many ways I have tweaked him, and I hope to continue to do so here. In fact, I plan to. I will invent new ways to tweak him if they don’t present themselves organically, because I love him and really enjoy tweaking him. He likes it, too. Trevor and I used to joke while endlessly waiting for Dr S during my multiple hospitalizations last summer that I would write a screenplay when this was all over entitled “Waiting for Dr S.” The title will be “The Tweaking of Dr S.” He always showed up, and he always brought his A-game to my bedside. I love that man.
I had great and ambitious ideas about transferring all my Caring Bridge posts over to this new, improved blogsite but it hasn’t happened. Yet. So for now, if you’re interested in reading (or re-reading) about the tweaking of Dr S, I’ve copied & pasted one of my faves at the end of this post.
As I’ve said before, surgeons and bedside manner don’t always go together. No peas & carrots there.
Because I don’t have enough on my plate or on my mind in the last few days before the big surgery, I had to go see Dr. S one last time. Personally, I though we had covered everything, and whatever we missed I certainly had covered with Dr Spiegel. But Dr S insisted I come back, one last time, to be extra sure everything is covered. I asked a simple question. I just wanted to know how he and Dr Spiegel are dividing up the work involved in this long, complicated surgery. Seems simple, right?
A little background: once we decided on the type of reconstruction surgery, Dr S referred me to Dr Spiegel. (Correction: once the post-mastectomy infection ruled out the easier option of tissue expanders to implants as my reconstruction, the option with which I was left was DIEP. Nitpicky? Perhaps, but I like full disclosure.) I did not want to go see Dr Spiegel. Nothing personal, I had just had it up to here with doctor’s visits, and I didn’t want to add another doc into my personal rotation. I’m 100 percent satisfied with the care I get from Dr S, and don’t feel the need for another doc. I was still under the mistaken idea that I could pretend to be a normal person in the interregnum between healing from the infection and reconstruction. Wrong! There is no “normal” anymore, so no interregnum.
I didn’t want to do it, but I did, and I have to admit, I’m glad I did, and Dr S was right. Yes, I said it: Dr S was right.
When Dr Spiegel told me that she and her assistant usually do the DIEP procedure themselves, but that Dr S was welcome to be involved, I got nervous. He doesn’t like to “be involved,” he likes to be in control; that’s why he’s so incredibly good at what he does.
It sounded so simple coming out of her mouth: She and Jenn usually handle the procedure but if another plastic surgeon refers a patient and wants to “be involved,” he is welcome.
I guess I envisioned two teams working together toward a common goal. Teamwork! Division of labor! Cooperation!
Back to the simple question: Dr S didn’t quite answer me yesterday when I asked him exactly which part of the surgery he’ll be doing on Wednesday. See, Dr Spiegel may be a bit more experienced with microsurgery (the part of the DIEP procedure that involves harvesting blood vessels from my belly and reattaching them in my chest). This is presumably why he referred me to her. He is exceptionally good at the “artistic” side of plastic surgery, and I know beyond a shadow of a doubt that he will do a phenomenal job.
To me, finding out which surgeon is doing which part of the surgery is a perfectly normal thing. If I hired two laborers to do work in my home, I would ask which one would be doing which part of the job.
Dr S understandably didn’t want to disclose too much, but my guess is that Dr Spiegel do the blood vessel part, and he would do the transferring of skin and sculpting that skin into a nice rack. He also said that any revision surgery and all my follow-up visits would be with him. Ok by me.
Some things just go together like peas & carrots, as Forrest Gump would say. Like idiot people & dumb comments. I’m still scratching my head about this one, but am putting it behind me and moving on. I’m trying, people, really trying, to smile sweetly and listen open-mindedly, but I don’t think I can stand it any longer. Do I really have to listen to one more person tell me how lucky I am to be getting “a free tummy tuck?” Reconstruction is serious business, people, and while I’m all for finding some good in a difficult situation, I AM NOT GETTING A FREE TUMMY TUCK. Yes, I realize I was shouting, and I apologize.
First of all, it’s not free. It comes with a whole slew of costs. While I may not be paying cash out of pocket, there are costs. Boy howdy are there costs. Any economist will tell you that even if something appears to be free, there is always a cost to the person or to society as a whole. I know this because I almost failed Economics in college and had sticky notes with econ principles taped all over my apartment that semester. (My near-failing grade had absolutely nothing to do with the fact that the class was taught by a wickedly cute TA who made it hard to concentrate. Yes, we flirted, then I was stupid enough to assert that I needed to earn my grade in the class and not coast on his goodwill and the fact that we drank beer together a few times at a seedy bar. True story. So stupid. The assertion, not the flirting.)
This “free” tummy tuck comes with a hip-t0-hip scar; 6 Jackson-Pratt drains, 5 nights in the hospital; 4 weeks of sleeping upright and in a chair; not being able to raise my arms for a week; a ban on lifting anything heavier than 5 lbs for a month; and no workouts for 6 weeks. Oh, and if you’re wondering how soon I will be able to get back out on the tennis court…don’t. Don’t wonder, don’t bring it up, don’t ask. Don’t even think about it. Don’t even speculate. Got it?
Can we talk about opportunity cost? Please, let’s talk about anything other than how long I’ll be on the DL for tennis. While I’m not paying actual money for this surgery, there’s plenty of opportunity cost, which means that to get one thing that we want, we usually have to give up another thing that we want. This is the idea behind the “no free lunch” adage. We could delve into economic efficiency, utilization of resources, societal costs, and other economic principles, but we don’t need to because (a) they’re pretty boring; (b) I never really learned them that well in the first place because of the prof crush & beer; and (c) all we really need to know is there’s no free lunch. Plus, I think I burned the textbook after that class was over. Bad, really bad.
Yes, I will come out of this surgery with a flatter stomach (something I could easily get from more time in the gym, BTW). And, as my cousin Susie said, I’ll be waking up to a nice present (new boobs). Both are true. But they’re not free. I reminded her, and will remind everyone who will listen, that I was pretty happy the way I was.
I don’t know where this place is or who these people are, but after all this talk of economics and surgery stuff, I want to go there. I might even stand in line for an “extreme” margarita. Don’t know what that entails, but I know I want one. Or two. Maybe I can even get a free lunch.
Pedey, oh Pedey. I don’t even know where to start.
He’s a cutie, for sure. We weren’t planning on getting a puppy, not really. Not that day, anyway. IMHO, any day is a good day to bring home a new puppy, but not everyone subscribes to that point of view, so you gotta tread lightly.
Flashback to May 3, 2008. It was Payton’s 9th birthday. I went to Petsmart to pick up something for Harry and the Houston Humane Society was there with the mobile adoptions. I figured I’d scritch a few pups, get a dose of puppy breath, tickle a few fat bellies, and move on. Then I saw this:
And that I now really, really, really wanted a puppy?
Long story short, Payton fell in love with Pedey (his mama taught him well), and we had to have him. Trevor, being the good sport that he always is, gave in, even though we already had one dog too many for him. Payton and I reasoned that Harry needed a dog, and since it was almost summer, the kids could help take care of this puppy.
I think you’re going to like it here. We have a mentor for you named Harry. He’ll show you the ropes. He makes the mean face sometimes, especially when he has a chewie, but just ignore him.
It took us a while to come up with the right name for the new guy.
Since he was officially Payton’s dog, Payton got to have the final say. And he decided on Pedey, after his favorite Red Sox player, Dustin Pedroia. The dog is nothing like his namesake: he’s cowardly, lazy, and clumsy with a ball. But the name stuck.
He settled right into our life and weaseled his way into my heart. Let me state for the record that I’ve never had a small dog, and I’ll admit, I’ve never quite understood the appeal. Now before you carry-dog lovers out there go ballistic and send me death threats, let me be clear: I don’t dislike carry dogs or their owners. I’ve just never understood the benefits.
Now I get it.
He was of course the cutest puppy ever. (I can say that because Maddy, the best dog in the universe, has gone on to her Great Reward, and because we adopted Harry at age 2 and never knew him as a puppy.)
Sometimes his legs or tail peek out from underneath the chair, and sometimes he’s completely hidden and I forget he’s there until I scooch the chair back and accidentally scare him half to death.
He still manages to fit. Mostly.
He likes to make a nest when he finds a comfy spot for sleeping. He will either wedge himself tight in between pillows & cushions, or get himself wrapped up in blankets & comforters. He will also stay in bed until he’s good and ready to get up, instead of leaping up the instant my feet hit the floor, like Harry does.
We don’t know what kind of dog he is, besides lazy & shiftless. Beagle, maybe? He has short, coarse hair; very different from the labs’ hair I’m used to. He has a very wrinkly brow and often looks quite contemplative. It’s mostly for show, though, because he sure doesn’t seem very smart.
He never did learn to love to swim, like the other dogs do. He doesn’t really even like for his feet to get wet, hence the need to be in my lap as often as possible.
Dana Jennings, a wonderful writer for the New York Times said, “Good dogs – and most dogs are good dogs – are canine candles that briefly blaze and shine, illuminating our lives.” I’ve had 4 dogs in my adult life: Maddy, the best dog ever in the history of all dogs. So good, I still get teary when I think of her, several years after her death (and y’all know I’m not much of a crier). So good that the urn of her ashes is on a side table in my bedroom, her name engraved in a simple, beautiful script, the urn way too small to contain all the love and memories she provided. Then there was Lucy, who we got to keep Maddy company. Her canine candle was pretty dim, and there is no urn for her. Then came Harry, and now Pedey. A short but very full doggie history.
Pedey was so happy this past summer, when I was convalescing from surgery and multiple hospitalizations. I don’t usually lay around much, but I had to then. And he loved it. He was always right by my side or in my lap, sleeping away. We joked that we should have snuck him into the hospital, so he could have slept on my bed with me there.
Well, Pedey, rest up; in a few days, I’ll have some more down-time. Are you ready?
I’m honored to be featured as a guest blogger on a fantastic blog called Journeying Beyond Breast Cancer, put together by a survivor-turned advocate named Marie who amazes me with the depth and breadth of her breast cancer and wellness education.
The post Marie so kindly featured of mine is one I wrote a while back, when one of my closest friends was also diagnosed with breast cancer. If you’ve already read it, move on. If not, have at it.
And check out some of the other info on Marie’s blog as well.
Click here to head straight to the blog.
The title says lists, plural, because I’m a realist and have never figured out how to willfully deceive myself. Other people I have no problem willfully deceiving, but myself, not so much. I have a list of what I want to get done, and another for what I will probably get done.
The countdown is on to my surgery. Yikes. One week from today, I will be at the hospital. Yikes. Reconstruction is a much-anticipated thing for most breast cancer patients. It means getting your body back (in a new, sometimes improved form). It is voluntary and scheduled whereas a mastectomy is required and imminent. It is symbolic of having made it, having endured, having gotten through the worst part. It is also scary, for sure. I don’t recall being scared before the mastectomy in May. Maybe I was, but have blocked it out. Now that I’ve seen photos of other mastectomies and have a better understanding of how the procedure is actually performed I certainly could be scared, but being scared after the fact isn’t very effective.
I’m guessing I don’t recall being scared about that surgery because things moved very fast (3 weeks from diagnosis to being wheeled into the OR); I was wrapping my head around the fact that I had been diagnosed with cancer at the tender age of 40 and with two young kids at home; and there were a ton of things to do to prepare. Not just the battery of tests, but the nesting. That nesting really should be an Olympic sport. I know I’d have to beat out some OCD pregnant women, but I think I could bring home the gold.
I’m not nesting this time around. I’d maybe only get the bronze. And it would probably be a bit of a pity vote. I just haven’t been putting in enough time flitting around the house, cleaning out closets, organizing the pantry and re-folding every blanket in the linen closet.
Since becoming a repeat customer at the hospital, I know what’s in store form me next week: the scratchy sheets, the one-size-fits-someone-giant gowns, the smell, the noise, the yucky food, the parade of nurses in & out of the room, the abundance of tape stuck to my body, the JP drains, the pain, the nausea, the lack of peace & quiet.
Ok, maybe I’m not scared but annoyed. I’m not so good at sitting still and being dependent. And I have a lot of that coming up. So I distract myself by making to-do lists. It makes me feel better. There’s something very satisfying about setting goals and crossing things off the list.
Things I will actually get done: play a lot of tennis.
Now that’s a good list.
Ugh, yet another reminder that my brain is filled to the brim with cancer ca-ca. I mentioned a few examples of the ca-ca recently, and here I am once again, consumed with it. The latest: while browsing on etsy, I came across a “store” called ETC Chest. My first thought was, hmmm, wonder what kind of breast cancer stuff they have in that “store.” Guess what kind of breast cancer stuff they have? NONE.
ETC Chest stands for “Embroidered Treasures and Crafts” Chests. It has nothing, nada, zilch to do with the human chest, flat or reconstructed.
Thank you, Gary Larson.
This little exercise in idiocracy (I think I just made that word up; I like it. No, wait there was a movie by that title. Never mind.) reminds me of how pervasive the cancer fatigue can be. Lots has been written about how a cancer diagnosis wrecks your life, and even when the cancer is vanquished and you end up with the best-case outcome, it’s always there. The fear, the weariness, the unseen scars.
My blog friend Lauren writes an incredibly eloquent blog called After Five Years. I highly recommend you check it out if you’re curious about what it’s like to live with cancer. She recently wrote a post about going back for a mammogram and it so perfectly captured the fear, the anxiety, the all-around shittiness of living with cancer. I held my breath throughout the entire post, then was gasping and sputtering and although it was only 9:30 a.m., felt like I needed a nap.
Lauren is a lot farther along in the “cancer journey” than I am, and in fact I can’t even comprehend getting a mammogram right now. Of course, having no breasts, it would be a physical impossibility, but still. I’m not yet to the point of having the routine scans that every cancer survivor endures at regular intervals. The stress and anxiety of knowing that there’s a (hopfully) comprehensive sweep through your body to sniff out errant cells is all-encompassing. I can imagine people all over the world watching the calendar, knowing that an appointment is upcoming. The anxiety of waiting for the appointment time to approach is nothing compared to the feelings that course through one’s body during the actual scans (or blood tests, as the case may be), and even that is a drop in the bucket compared to the sheer terror of waiting for the results. Talk about PTSD. It’s a wonder each and every cancer survivor isn’t a raging alcoholic. Or seriously addicted to Twizzlers. I can see myself going down either path, maybe both. And I’m just getting started on this “cancer journey.”
Life goes on for survivors. That’s a beautiful thing, and it becomes all the more precious when a serious illness rudely interrupts your life. But it’s not easy. Cancer is a sneaky beast. It invades your body, and even when it’s caught early, small, and contained, it has a unique ability to rattle your cage, big time.
The kids were scheduled to be out of school today to celebrate Presidents’ Day. Not sure how exactly to celebrate this day, because it seems an obscure holiday marked mainly by furniture sales. But it is a day for celebration, if not for the presidents than for the fact that school is indeed in session (sorry, teachers). Because of our recent snow day on a day during which there was no actual snow, we have to make up the holiday. My kids were royally bummed about this. Macy circumvented it all by waking up yesterday with a sore throat and a nasty cough; remnants of last week’s strep throat, I suppose. So she’s home after all, and Payton is ticked but working hard to be a good sport.
I’m embarrassed to say I don’t know much about our presidents. I’m particularly ill-educated about the early guys. My kids make up for it, though, and can help get me out of a jam if I need info on the founding fathers.
Payton & Macy are particularly well-versed on the leaders of the free world, past and present-day. Why? Because they’re above-average in every way, like all the kids who live in our suburban bubble, of course. No, really, because of this:
The presidential placemat.
We have one for the flags of the world, too. It’s not quite as valuable as the presidential one, but does come in handy during the Olympics when an athlete is identified by a tiny icon showing his/her country’s flag. Payton gets them every time.
It hasn’t been used in a while because the kids have progressed, slightly, in their table manners and no longer need plastic sheeting and a power washer after every meal. But it looks like the flags placemat got put away before being sufficiently scrubbed and sanitized. Gross.
To distract my germophobe self from all the petrified crud living on that plastic, let’s get back to the presidents.
For my edification and your entertainment, I’ve listed a fact or two about our presidents. Some you may know, probably from watching “Cash Cab” which is where I find the most useful information these days.
George Washington: was the only prez to be unanimously elected. Upon his election, he only had one tooth. For real. His many dentures were made from human teeth, animal teeth, ivory and even lead, but not wood.
John Adams: our longest-living president. He died at age 90, damn near 91. He missed it by 118 days.
Thomas Jefferson: TJ gets a lot of press, but I wonder how many people know this: he wrote his own epitath and designed his own tombstone, but neither contained a reference to him having been a president.
James Madison: shortest president, at 5 foot 4. Also the lightest, at just 100 pounds. Teeny little thing. Tallest president? See Abe Lincoln. Heaviest: William Taft.
James Monroe: his daughter was the first White House bride, and he was the first US Senator to be elected president.
John Quincy Adams: swam nude every day in the Potomac River. Can you imagine present-day presidents doing that?? Where was the National Enquirer when we needed it? And aren’t you right now picturing this guy in the buff? Thought so. Of course he accomplished a lot of great things, and perhaps is our most pedigreed president, but now every time I hear his name, I’m going to think about him jumping in the Potomac in all his glory.
Andrew Jackson: had a great head of hair. Suffered a bullet wound near his heart in a duel at age 39 and carried that bullet until his death. Upon election, he granted government jobs to some 2,000 of his supporters and established the so-called “kitchen cabinet” of advisors. He was the first, and probably last, president to run a debt-free administration.
Martin Van Buren: first president to be born in the United States. He and his wife still spoke Dutch at home. Tried unsuccessfully to gain re-election 3 times, then gave up. Probably for the best.
William Henry Harrison: catchy name, and perhaps the only president for whom all 3 names are popular modern-day baby names. Sadly, was the first president to die while in office. He served just 30 days because of a nasty pneumonia. Glad there’s now a vaccine for that.
John Tyler: Harry S Truman’s great-uncle. He was disowned by his own party (the Whigs) because they didn’t like his financial policies.
James K. Polk: graduate of UNC. Survived a gallstone operation at age 17 with no anesthesia. Ugh.
Zachary Taylor: served in the army for 40 years and never voted before becoming president at age 62. Kept his army horse, Whitey, on the White House lawn, and tourists would pluck a hair from Whitey’s tail as a souvenir. Ouch!
Millard Fillmore: installed the first library, kitchen stove and bathtub in the White House. Refused an honorary degree from Oxford University because he was unable to read Latin and felt like a sham accepting a degree he couldn’t read.
Franklin Pierce: Installed central heating in the White House. Well, probably didn’t do it himself but had it done. He affirmed rather than swore his oath of office, for religious reasons. Gave his inaugural address from memory, without the aid of even one note card. Impressive.
James Buchanan: the only bachelor to ever occupy the White House. His niece, Harriet, took responsibility for the White House hostessing duties.
Abe Licoln: considered by historians to be our greatest prez, followed by G. Washington. Was not just the greatest, but also the first to wear a beard and the only president to hold a patent (for a boat-lifting device).
Andrew Johnson: was the youngest prez to be married, at age 18 to Eliza, aged 16. Was buried beneath a willow tree he planted himself that came from a shoot of a tree at Napoleon’s tomb. Try getting that through customs these days. He was also wasted at his inauguration as Lincoln’s VP, but had a good reason: he was sick with typhoid and self-medicating with booze.
Ulysses Grant: smoked 20 cigars a day (and died of throat cancer. Hmmmm.). Although he witnessed some of the bloodiest battles in history, he was grossed out by the sight of animal blood and couldn’t eat a rare steak. My kind of guy.
Rutherford Hayes: his wife was known as “Lemonade Lucy” because she refused to serve alcohol in the White House. He kept his campaign promise to only run for one term, and I’m sure the subsequent visitors to the White House weren’t nearly as thirsty as those who came during his term.
James Garfield: our first left-handed president who died from a blood infection caused by repeated probing for an assassin’s bullet. Oh, I how I hate infections.
Chester Arthur: His wife Ellen died before he took office so his sister Mary assumed hostessing duties. He was a night owl, enjoyed night clubs and entertained like a rock star. My favorite quote of his: “I am a president of the United States states but what I do in my private life is my own damn business.” Amen, brother.
Grover Cleveland: only prez elected to two non-consecutive terms. He served as the 22nd and the 24th president.
Benjamin Harrison: quite the windbag. He made 140 different speeches in 30 days, and I don’t think he had a staff of speechwriters. He was also the second prez to become widowed.
William McKinley: was in terrible physical shape. So bad that his doctors believe that if he’d been fitter, he would have survived the assassination. Let that be a lesson to you, people.
Teddy Roosevelt: a great man, but an attention whore. He was known to want to be the bride at every wedding and the corpse at every funeral. Strange.
William Taft: lots to say about this guy. He was the only one (so far) to serve as both president and Chief Justice. He created the tradition of the prez throwing out the first pitch of the baseball season (and some of his followers needed to work on their windups to avoid looking like pansies). His wife planted the first cherry trees that now adorn the Washington, D.C. landscape and look so gorgeous in the spring. He was by far our fattest president, weighing well over 300 pounds. He got stuck in the White House bathtub the first time he used it and had to order a new one, after a crew of embarrassed staffers wrestled him out of the too-small one.
Woodrow Wilson: an avid golfer, he refused to let the D.C. winters stop him from playing his sport and used black golf balls in the snow. Clever. His second wife, Edith, was distantly related to Pochahontas.
Warren Harding: one of the meanest looking presidents, IMHO. Both of his parents were doctors yet still gave him the middle name “Gamaliel.” Odd. He was the first newspaper publisher to be elected president and was known to be patient with the press, offering lengthy press conferences. Liked burlesque shows and snuck off to them as prez. His great-grandmother was black. He was pretty stern looking, but I like this photo of him and his dog. In fact, I may have to also do a post on presidential pets.
Calvin Coolidge: punched the Boston mayor in the eye while he himself was governor. Nice. Required 9 hours of sleep and a 2- to 4-hour nap every day. How the hell did he get anything done?
Herbert Hoover: was the youngest member of Standford’s graduating class. He and Thomas Edison were named the two greatest engineers by Columbia University. A social butterfly, for the first three years of his tenure in the White House he dined alone just three times. He was the first prez to donate his salary to charity. He was also one of the most honored presidents, with 84 honorary degrees, 78 medals and keys to numerous cities.
Franklin Roosevelt: elected an unprecedented 4 times. Was the first prez to be shown on TV. Claims to have been related by blood or marriage to 11 former presidents.
Harry Truman: Lots of good stuff about him professionally, but here’s something you may not know: his mom was a Confederate sympathizer and refused to sleep in Lincoln’s bed during a White House visit. He was the first prez to use air travel across the country. To recognize his contribution to the health care system, President Johnson presented Mr. and Mrs. Truman with the very first Medicare cards. The “S” that serves as his middle initial isn’t short for anything, so if you see Harry S. Truman, with a period after the “S” you know it’s wrong. An old copyediting pet peeve of mine.
Dwight Eishenhower: Payton’s favorite president. In fact, when P was chosen to portray President George Bush in his first grade program, he was ticked that he couldn’t be Ike. I guess Ike wasn’t current enough to make the program. He is known for ordering the integration of Central High School in Little Rock in 1957. Good man. He was the last prez born in the 19th century and the first prez to be a licensed pilot. He served in both World Wars and was an excellent cook. This photo, by the way, is one of the few in existence that show Payton wearing long pants. Take a good look, people, because it is a rare sighting.
John Kennedy: youngest prez elected (43) and youngest prez to die (46). Was the only prez to serve in the Navy and to appoint a sibling to a cabinet position. Had he not been so young and handsome, his wife may well have eclipsed him in notoriety and popularity, not unlike Charles and Diana. Jackie O was the first lady most outspoken about disliking the term “first lady.”
Lyndon Johnson: I gotta like him because he’s a Texan, but he seemed like a jerk. I do like his War on Poverty (at least in theory), and his civil rights reforms. He was the first prez to reject his official portrait, saying it was the ugliest thing he ever saw. His wife wins the prize for first lady with the best name. Although Lady Bird wasn’t her real name (it was Claudia), a wet nurse or nanny or someone proclaimed she was pretty as a lady bird, and the name stuck. Charming.
Richard Nixon: graduated from Duke, so he can’t be all bad.
Gerald Ford: he was born Leslie Lynch King, Jr, but I’m not sure how he came to be known as Gerald Ford. Need to check up on that, but this post is already stretching on and on. Plus, I need to save room for this: he and Betty were both models before they were married, and he campaigned for Congress on their wedding day. She was a patient woman. Or maybe that’s why she needed to drink. Both of the assassination attempts against him were committed by women. Women today owe Betty a big debt of gratitude as she was a big player in removing the stigma from a breast cancer diagnosis. Here she is with her hubby after her mastectomy, reading a card signed by 100 members of Congress. She was diagnosed in 1978 (when I was 9 years old, same age as my daughter now), at age 56 and was very publicly and bravely faced a mastectomy. She became a beacon of hope to lots of women, including Susan Komen, who died from the disease in 1980 at age 36. Komen did say “If Mrs. Ford can admit she has breast cancer and tell the world she intends to fight it, then so can I.”
Jimmy Carter: first prez born in a hospital (as opposed to at home, I presume), and the first to be sworn in using his nickname, “Jimmy” instead of his given name, James.
Ronald Reagan: was our oldest president, leaving office at age 77. He was also the first prez to have been divorced. During his tenure, our first female justice of the Supreme Court, Sandra Day O’Connor, was appointed by a landslide 91-8 vote.
George Bush: Bush is reportedly related to Benedict Arnold, Marilyn Monroe, Winston Churchill, and Presidents Franklin Pierce, Abraham Lincoln, Theodore Roosevelt and Gerald Ford. Weird. Bush became the first vice president ever to serve as acting president when Reagan underwent surgery for three hours in 1985. Good thing he’s the only VP to serve as acting pres, since it was such a short time frame, he might easily have become the second person to hold that honor. He’s also the second man in US Presidential history whose son became President. In 1992, while at a formal dinner in Japan, Bush became ill and vomited on the prime minister of Japan, then fainted. Oh the horror.
Bill Clinton: childhood nickname was “Bubba.” Nuff said.
George W. Bush: press nickname was “Shrub.” Nuff said.
Another new study about women undergoing care for their breasts shows we’re still not quite getting it right. A New York Times article by Denise Grady published 2/18/11 is so well-written I would love to just reprint it here and be done for the day. But then I wouldn’t be able to pick and choose the parts of the study, and the article, that interest me the most and blab about them here, and it is all about me, right? Or should be. But it’s not. It’s about the 1.6 women who undergo a breast biopsy every year in this country.
Let’s back up a minute. That’s 1.6 million mothers, wives, sisters, aunts, grandmas, cousins, friends, and neighbors. That’s probably someone you know and love. Or at least see at the grocery store or at a family reunion.
Of the 1.6 million women undergoing biopsies, 261,000 will receive the earth-shattering, life-altering news that they have breast cancer. Of those 261,000 cancers, 207,000 will be the invasive kind and another 54,000 have DCIS (ductal carcinoma in situ), which means the cancer is contained and has not traveled to other tissue. One thing the article didn’t tell me is how many of the 261,000 women have both invasive and DCIS, like me? Overachiever that I am, I had both kinds. I always did like two different flavors of ice cream on my cone as a kid, but really this is taking the “variety is the spice of life” idea too far.
What’s important about the new study, by Dr Stephen R Grobmeyer, director of the breast cancer program at the University of Florida? That far too many women are undergoing surgical biopsies instead of needle biopsies (and yes, that is a gigantic needle Dr Grobmeyer is holding in the picture at left). He and his colleagues studied 172,342 breast biopsies and found that 30 percent of these biopsies are surgical when they should be needle. The going rate should be 10 percent surgical, according to the established medical guidelines.
While the 172,342 biopsies studied all took place in Florida, the expectation is that the rest of the country is similarly over-performing the surgical biopsies, which translates to unnecessary pain & suffering (and potential complications) for the women, as well as major expense. And we all know what a mess that creates.
Why are so many docs performing the more extensive, more expensive, more invasive procedure? We don’t know. The study doesn’t know. The docs who studied this issue have a theory, but they don’t like to talk about it.
They don’t want to rat out their fellow surgeons, but there is a suspicion (and also a possibility) that some docs perform surgical biopsies, even when a needle biopsy would do, because they make more money. I’m not trying to write an expose here; it’s a fact. The surgeons have a choice: refer their patient to a radiologist or do a surgical biopsy. If they choose the former, they lose the biopsy fee. Here are the numbers: hospitals charge $5-6K for a needle biopsy, but double that for a surgical biopsy. Doctors’ fees follow similar lines: $750-1,500 for a needle biopsy, and $1,500-2,500 for a surgical biopsy.
Dr Melvin Silverstein is a breast cancer surgeon in North Beach, CA, who spoke out in the Times article about the money. He said some of the surgical biopsies were performed by surgeons who didn’t want to lose the biopsy fees by referring their patients to a radiologist. “I hate to even say that, but I don’t know how else to explain these numbers,” says Dr Silverstein.
Dr Elisa Port of Mount Sinai Medical Center in Manhattan says “I see it all the time. People are causing harm and should be held accountable.” By “harm” I assume she means surgical vs needle and by “people” I assume she means surgeons. Dr Susan Boolbol published a 2009 study on this issue as well. As for the idea that money is behind the procedures, she says “A huge part of me doesn’t want to believe it’s true.” But what about the other part?
If it’s not money motivating them, what about ego? I’ve dealt with a couple of surgeons myself. Not from North Beach or Mount Sinai, but I think it’s safe to assume that most surgeons, regardless of who they are or where they live, have a healthy ego. You can’t do what they do without feeling mighty confident about your ability and your judgement. Think about it: when you have a condition that requires surgery, the person performing that surgery not only attempts to fix the problem, but also holds your life in their hands. Literally. Once they cut you open and handle the contents under your skin, they are holding your life. Knowing that you can do that, and then executing that successfully, feeds the ego.
So isn’t it possible that the surgeons who are performing surgical biopsies when needle biopsies would do aren’t money-grubbing, but egotistical? Is it possible that they truly believe they can tackle that problem, and do it better than anyone else? That certainly is the attitude I want my surgeons to have. I want them to believe so fervently that they’d come to blows in the OR over who is most qualified to perform my surgery. How’s that for an image? A gaggle of scrubbed-up, gowned & masked surgeons going at it over who gets to slice & dice. Times like this make me wish I could draw cartoons. That would be a good one.
Seems there is more than money involved in the biopsy issue. Whether surgeons order a surgical or a needle biopsy also depends on the type of surgeon, and I’m not talking orthopedic vs plastic. Among breast surgeons at Beth Israel in Manhattan, those employed by the hospital and involved in teaching fell under the 10 percent guideline. Those in private practice had a 35 percent rate of surgical biopsy. And the rate of surgical biopsies was even higher for general surgeons, not breast surgeons (37 percent). Because all the docs earn a biopsy fee, they all are chasing the same carrot.
A side note here is required, to address the patient’s role in all of this. I don’t want to dog the patient, because I am one, but I also would wonder about any woman who agrees to have a general surgeon do a breast biopsy. If a mammogram comes back funny and the OB-GYN recommends a biopsy, I sure hope the OB-GYN would refer to or the patient would demand a breast surgeon. And I also would hope that the OB-GYN and the breast surgeon would discuss the pros & cons of different biopsy types before rushing a woman into the OR. At the risk of sounding like Forest Gump’s friend Bubba discussing types of shrimp, there are several choices among needle biopsies: fine-needle aspiration, core-needle aspiration, stereotactic, and vacuum-assisted core needle. More than you wanted to know? Perhaps, but a useful point in the patient’s role.
I’d like to think that education is another reason for the high rate of surgical biopsies. And I mean by the patient and the doctor.
A surgical biopsy requires at least a 1-inch incision, then stitches of course to close that incision. The incision and stitches lead to a scar, not to mention pain and downtime, and introduce the possibility of infection. Yes, it always comes back to the infection with me. It would for you, too, if you’d ever gotten within spitting distance of a mycobacterium. Blech. Plus, if that surgical biopsy comes back with malignant results, we’re now talking about two surgeries instead of one.
So we’ve got money, ego, and education as reasons this is happening. Regardless of reason, what is the answer? Dr Silverstein has an idea. He says one way to stop excessive surgical biopsies is to ban them. Unless they are truly necessary and a needle can’t do the job, make them against the rules. And his hospital has done just that. “We made a rule,” he said. “If it can be done with a needle, it has to be. We embarrass you if you do an open (surgical) biospy. We bring you before a tumor board to explain.”
Ooooh. I’d love to be a fly on the wall. Seeing a bunch of surgeons embarrassing each other? And there’s not a reality show for that?
Dr Silverstein went on to say that when he lectures other docs and asks for a show of hands as to how many audience members perform surgical biopsies, no one raises his/her hand. “Nobody will admit it,” he says. Personally, I imagine him smirking a bit when he said that. That’s why he takes his message to the streets, to educate the docs and in turn hopefully educate the patients. He’s discovered that it’s more effective to go straight to the patients, though. He and his colleagues say that any woman who’s told she needs a surgical biopsy should question the doc and consider getting a second opinion.
Dr Silverstein believes in the power of the people. In this case, the power of the women. I like that. A lot. He says, “Who just overthrew Mubarak? The people. This is exactly the same thing.”