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.