Leavin’ on a jet plane
Posted: March 1, 2011 Filed under: breast cancer, drugs, food, infection, kids, tennis | Tags: breast cancer, cake, cancer battle, consent forms, DIEP, family, Hibiclens, hospital, infection, Janis Joplin, John Denver, kids, Leaving on a jet plane, margaritas, new boobs, pastichio, plastic surgery, reconstruction, recovery, sweet notes from sweet girls, tennis 20 Comments
I’m not really leaving on a plane and my bag isn’t packed yet, but as I ready myself, my home, my kids, & my life for the next round of surgery, I find the lyrics to that song running through my head. Peter, Paul & Mary; Janis Joplin; and John Denver all recorded versions of this sappy little love song, with its catchy yet insidious chorus that will get stuck in your head for half the day if you’re not careful. It’s meant to be an ode for lovers, and I’m usually immune to sappy stuff and odes, but with the big surgery rapidly approaching, I must be going soft because this goofy tune is reminding me how hard it is to leave my family, endure a nasty procedure, and be cooped up in a hospital room. I am a terrible patient. No truer words have been written.
I have written a lot about what a terrible patient I am. Not that I won’t do what needs to be done to get to where I need to be in this “cancer journey” but that I hate every minute of it. I’ve also written my fair amount of scathing posts lately about stupid things people say, so I won’t go there now, but suffice to say if you were planning on telling me that at least I’ll be getting some rest, or to enjoy being waited on, you can skip it. I don’t like to rest and I really don’t like having someone wait on me. As a determined two-year-old might say, “Me do it.”
As terrible as I am as a patient, though, I’m ready. I’m at the point in which I’ve prepared all I can, and whatever doesn’t get done will just have to wait. I’ve been a busy little bee lately,
feathering my nest and gearing up for what I know will be a hideously gross surgery followed by a long recovery. This process is akin to getting ready for vacation: at first the list of things to do seems miles long, then time ticks on and the list is whittled, and then you become exhausted from and sick to death of all the prep and can’t wait to just get going. While I’m not exactly going on vacation (!), I am done with all the prep and ready to just get going.
I still haven’t watched the video consultation that explains and illustrates the surgery I’m having tomorrow. Maybe I’ll just use my imagination. You know it’s a big deal with you get 12 pages of pre-op instructions, followed by a 3-page alphabetized list of medicines to avoid.
One of my instructions is to shower with Hibiclens, an antimicrobial wash, for 3 days prior to surgery. No problem. You know what a germaphobe I am. Some of the other text from the informed consent section of the paperwork made me laugh out loud, especially the parts about who’s not really a good candidate for this surgery: women who require more complex breast reconstruction (what’s more complex than this surgery??). Women who are good candidates are those who have inadequate chest wall tissue (me); those who have concerns about breast implants or tissue expanders (I wasn’t too concerned but my body apparently is); and those who may have contracted a post-surgical infection. Yep, that’s me.
The literature then goes on to explain that infection is very unusual after surgery. Yeah, maybe for some people. And that patients must inform the doctor if she has any other infections, “such as ingrown toenail, insect bite or urinary infection.” A bug bite? Really??Oh, mercy, if only it were that simple. How I would love to say I have an ingrown toenail instead of a mycobacterium fortuitum.
There’s also a lot of scolding in the section on bleeding: “Increased activity too soon after surgery can lead to increased change of bleeding and additional surgery. It is important to follow all postoperative instructions and limit exercise and strenuous activity for the instructed time.” Yeah, yeah. Blah, blah, blah.
Yesterday was a near-perfect day: I had a few hours at home to get things in order, then on to Beauty Envy to get the hot new shellac manicure. It’s supposed to last a couple or three weeks without chipping; we shall see. I’m not going to be doing any manual labor anytime soon, so the prognosis is good. Got my toes done, too, which is always nice. Even though my toenails are short as can be, they still take a mighty beating from tennis, but they are pink and shiny now. After the nails extravaganza, it was off to lunch to enjoy the sunshine and margaritas in the company of some first-rate girlfriends–a trifecta for sure. You can have your acai berries and super elixirs; for me, there’s nothing more fortifying than the sun on my face and a drink in my hand with my friends.
Today will be equally good with my last tennis drill of the season, then lunch with whichever members of the team are game for a little noontime tippling. I also gotta make a quick belated birthday meal for my dad, who recently turned 75 but looks a decade younger, easily (I’m hoping it’s genetic, but not very optimistic). I’m whipping up pastichio (Greek lasagna) and a pineapple upside-down cake, two of his favorites. He’ll be ferrying the kids to and fro and keeping up with Macy’s near-constant stream of chatter, so he’ll need a good meal. 
Speaking of Macy, she’s at it again: leaving me a note to find when I least expect it but am most likely to need a little pick-me-up. She’s a little apprehensive about me going back for more surgery, but the long summer of me and revolving hospital door must have toughened her up because instead of being sad she’s curious (which hospital? how long will you be there? can we come visit?) and stoic.
She needs a little work on the spelling (I assume that “Your asomest chid” means “Your awesome-est child”) and “Hopefuley” she will keep writing without regard for menial details like spelling. Most important is the message: if Macy says this is my last surgery, then I can go into it with a clear mind and a happy heart.
Apropos
Posted: February 28, 2011 Filed under: breast cancer, drugs, infection | Tags: 200 Days of Dread, Afrika Korps, breast cancer, cancer battle, hospital, Jim Adler, lawsuit, Mariah Carey, mastectomy, Nancy Brinker, new boobs, pink ribbons, plastic surgeon, plastic surgery, post-mastectomy, Promise Me, reconstruction, Rommell, Super Bowl ads, Super Bowl XLV, Susan G. Komen Foundation, Women's Health and Cancer Rights Act of 1998 6 Comments
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.
Cha-ching.
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.
As if.
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.
The Big Dig
Posted: February 18, 2011 Filed under: breast cancer, infection | Tags: Barney Frank, Boston, breast cancer, construction, DIEP, ET, haz-mat, I-93, infection, Methodist Hospital, new boobs, nurse practitioner, plastic surgeon, reconstruction, the Big Dig 39 Comments
Yesterday was yet another trip to the medical center, for one last pre-op visit to Dr Spiegel before reconstruction. I really need to think of a catchy title for the surgery, something like Boston’s big construction project, the Big Dig. Come to think of it, there are some similarities between the Big Dig and my surgery: both relate to the Central Artery and Tunneling (in fact, the official name of the Big Dig is the CA/T Project). Both are complicated, involve lots of people, and take a mighty long time to complete. But unlike the Big Dig, which replaced the 6-lane elevated Central Artery (I-93) with a 3.5-mile long underground tunnel, my surgery won’t cost $22 billion. Hopefully. My insurance company, which has been mighty nice so far, might just stroke out about that figure. 
The Big Dig sounded like a great idea and was intended to be a tremendous boon to an already kick-ass city. But mismanagement, scandal, and skyrocketing costs quickly dominated headlines, and my second-favorite city had a big mess on its hands. Congressman Barney Frank quipped, “Wouldn’t it be cheaper to raise the city than depress the artery?”
Say what you will about Barney, but that’s a good line.
But back to the update on the doctor visit. This was Trevor’s day to meet the lovely Dr Spiegel, her ultra-energetic PA, Jen, and her trusty nurse Sonia. My friend Laura, who is a nurse practitioner in the liver transplant unit at Methodist, met us there, too. Dr Spiegel wanted to brief my caregivers on what to expect post-surgery, and Laura kindly offered to help out. In her white coat and super-stylish glasses, she brought a nice element of professional gravitas to the occasion. She told Dr Spiegel that she’s done some match-making for me and picked out an anesthesiologist she likes and trusts, and Dr Spiegel agrees that Dr Ashmore is the guy for me. Laura and Sonia recognized each other right away, then she and Jen hugged and high-fived, happy to be collaborating on my case. It’s good to have connections.
The visit itself was pretty uneventful. I like uneventful at the doctor’s office. Dr Spiegel went over a few basics with us but since we were pretty much up to speed on everything, there weren’t any new developments. I’m finished with all the pre-op testing (bloodwork, blood donation, x-rays, EKG, CT-scan), and just need to watch the video consultation on Dr Spiegel’s website to get a more detailed overview of the procedure. I’m not saying I’m scared to do that, but after watching a video on youtube of an actual surgery, on an actual person, I’m not in a big hurry. Ick.
The one topic we did need to cover, though, was the infection. I wanted to bring it up in a way that seemed breezy and conversational, as opposed to, “How the sam hell are you going to keep this bloody nightmare from recurring, lady?” I was pretty sure that wouldn’t go over too well.
I’m not the most diplomatic person, and I tend to say what I really think, even if it’s not pretty or may be hard to hear. It’s a blessing and a curse. Believe it or not, I actually do put a lot of thought into what I say and how I say things, but because I’m pretty direct, sometimes things come out a bit, um, harsher than I intend.
Sorta like, “Are you outta your mind??? You’re not really going to wear that are you?” or “Clearly that person has neither friends nor a mirror; why else would one go out in public looking like that???” as opposed to “Have you thought about what to wear?” Those kinds of niceties take a bit of work on my part. My instinct is to just blurt out whatever needs to be said, and let the chips fall where they may. We’re all grown-ups, right?
Right. Except I really don’t want to tick off the nice lady with the very sharp scalpels. That would be bad. So I fumbled around and probably sounded idiotic by saying, Um, so, uh, like, how worried do we need to be about the um, you know, infection? You know, like, um, during the uh, reconstruction?
She smiled knowingly, and if she’d been sitting closer might have patted my hand and said, there there. She reminded me that my case isn’t exactly normal, and I tried not to tell her that “normal” is pejorative and listened to what she had to say.
She has a plan, of course, and it sounds like a good one. Usually, in cases of infection, she would wait to do reconstruction, to be sure the infection is truly gone. But in my case, which again is not normal, we need to get in there sooner rather than later and clean up the mess, i.e., excise the damaged tissue and replace it with some new, fresh meat. And by meat I mean my own flesh. Fresh flesh. Yum.
The plan is to work on the infected side last, and she promised to take her time and wash it all out thoroughly with 6 liters of antibacterial solution. That’s way more than usual. She’ll have separate fields of instruments, and once the instruments touch the infected area, they’ll be classified as contaminated. Remember the scene in the movie ET at the end, when the little guy was dying, and the family home was a warren of plastic sheeting populated by feds in Haz-mat gear? I’m having visions of the Haz-mat suits. But hopefully no aliens. Although I do kinda like the polka-dotted kiddie pools in this scene.
So we’re on track, on schedule, and presumably ready to go. She estimates the surgery will last 8 hours, not 12-15 like I’d originally heard. Of course, we won’t know what we’re dealing with until she actually gets in there and starts cutting and scraping away, but I’m going to be optimistic.
Meanwhile, I’ll be thinking of a name for my own personal Big Dig (if you have ideas, send them em!), and can’t wait to post before and after pictures like this:
Except, I won’t make you look at the before pics, because they’re pretty gross, and that would just be mean.
Other than the shooting…
Posted: February 15, 2011 Filed under: breast cancer, drugs, food, infection | Tags: breast cancer, cancer diagnosis, champagne, infection, surgery, survivor, tennis 5 Comments
With the exception of being diagnosed with breast cancer at age 40, I’ve always had a pretty healthy countenance. Ok, I know that sounds like the old joke, “Other than the shooting, how’d you enjoy the play, Mrs. Lincoln?” And now, with the flu, the joke’s on me.
Being sick, or being diagnosed with cancer, makes one appreciate one’s good health. For schizzle. Again with the annoying cliches, but somehow we don’t know how good we’ve got it, until it’s gone. Whatever “it” may be. In my case, it’s good health.
Even after my diagnosis and surgery and epic battle with the infection, people would universally remark upon how healthy I looked. As if the stereotypical look of a cancer patient or infection warrior has to fit into a preconceived box. I suppose that’s the very essence of stereotyping: it exists for a very legitimate reason, and the reason is that it is true.
Follow me? It makes sense to me, but it may also be the cockamayme ramblings of a fever-induced, Tamiflu-fueled insanity. Temporary, I hope.
I’ve said it before and will say it again: cancer is not a gift. Anyone who thinks it is either (a) doesn’t have it; (b) has it but is whacked-out on narcotics; or (c) is a lying sack of you-know-what. It’s a disease, pure and simple. It’s a malfunction at the cellular level. Something changes in the DNA that alters the way the cells behave. In breast cancer, in particular, BRCA1 and BRCA2 are tumor suppressor genes — they keep cancer tumors from forming. When these genes undergo change, which can happen for a variety of reasons, they no longer cause cells to die at the right time, and cancer is more likely to develop.
I’m not sure how someone can understand that and still think that cancer is a gift. There’s nothing, not one thing, in gene mutation that even hints at slick, shiny wrapping paper and silky bows.
Because I’m a realist, I don’t expect people to bump up against cancer–whether with the bomb being dropped directly over one’s house or simply knowing someone who’s been diagnosed–and drastically change their lifestyles. In my case, my lifestyle didn’t need much changing. I ate healthfully, exercised pretty much every day, played as much tennis as humanly possible, chose organic and turned my nose up at pesticides. Granted, I could have cut down on the volume of champagne I consumed, but I felt like that fell under the “live life to the fullest” category.” Sounds good, right?
So why was I the one to get cancer, while people who treat their bodies much less kindly go on to live long, uncomplicated lives? I have no idea. Was my diagnosis handed down from on high, with some mystery contained therein for me to interpret and then carry out? Doubtful. Was it my destiny to contract this blasted disease and then come out the other side a mouthpiece for the Cause? Maybe, although I’m not there yet. Was it random bad luck, in that the great karma wheel stopped spinning and I was the one in eight? That sounds more likely.
No matter the reason, the disease did come calling, and the infection did set up shop, and my life did change. Some of the change was for the better: I’ve learned a little bit of patience, how to let go (sometimes), I’ve become pretty well-educated in a fascinating topic, I’ve learned how to blog, and I’ve made some new friends.
That’s not all bad.
Now that I have a surgery date…
Posted: February 2, 2011 Filed under: breast cancer, drugs, infection | Tags: breast cancer, cancer battle, cancer diagnosis, DIEP, hospital, Mubarak, new boobs, plastic surgery, reconstruction, Sarah Palin, surgery, Thumper 5 Comments
Now that I have a surgery date, if you feel compelled to join the Greek chorus that’s asking if I really want to have the surgery, don’t.
Just don’t. 
I don’t want to hear it.
I don’t need to hear it. 
Isn’t the fact that I have a surgery date evidence enough of my decision to go forward?
If I didn’t want to have the surgery, would I really have a date? Would I be putting myself through the mental anguish that accompanies such a decision and the days that stretch on between said date and today?
Sometimes I hate people. 
Mainly those who say stupid things, but Sarah Palin & “President” Mubarak are on my list too. If you like either of these idiots, you may want to unsubscribe from this blog, because I will most likely rip on them and their idiot-ness a lot, esp when I’m in a foul mood like I am now. And if ripping on dumbasses makes me feel better, then Katy bar the door because I’m gonna do it. 
So there.
And don’t tell me that people mean well, and sometimes they just don’t know what to say. They can suck it. If it’s that hard to come up with something not stupid to say, then perhaps they should zip it.
But back to the surgery. Reconstruction is a big step. It’s a scary step. It’s a horrifying assault on my already-beleaguered body. If things were different, I wouldn’t be in a hurry to do it. By “things” and “different” I mean the path of destruction left by the blasted mycobacterium.
I hate that myco almost as much as I hate Sarah Palin. Sheesh, just typing her name makes me mad.
Ok, reigning it in.
That darn mycobacterium wrecked things up good. If it was just a question of having a flat chest, I’d be in no hurry for reconstruction. I kinda like my flat chest. It’s simple. It’s low-maintenance. I never have to wonder if people are paying attention to what I’m saying, because they’re certainly not distracted by cleavage (there is none). But thanks to the infection and subsequent tissue excision (gross, I know), it’s a mess that’s gotta be fixed.
And thanks to the infection, I can’t just pop in the implants and go along my merry way. I remember being asked as a kid if I had to do everything the hard way (I was a little stubborn back then). The answer is yes. Yes, I do.
I do not like surgery. Or hospitals. Or hospital gowns. 
Or hospital linens (scratchy, so scratchy). Or hospital food. Or the hospital smell. Or needles. Or being an invalid. Or depending on other people. Or waiting on other people to show up and do what they need to do so I can get outta there.
I do like the drugs, though.
But not enough to rush into a big, long, complicated surgery. So while I don’t actually want to have this surgery, I need to, to clean up the leftover infection mess. It’s going to be hard, and the recovery will be long. I won’t see a tennis court for several months. I will once again be at the mercy of other people’s kindness. But I need to do it, so I will. And I will leave you with another mantra from my childhood: If you can’t say anything nice, don’t say anything at all. Thank you, Thumper. Preach it, little rabbit. 
And if you can’t follow Thumper’s advice, and still feel compelled to tell me how dangerous this surgery is, or how complicated, or ask me to think about how it might affect my kids, or any other stupid thing that flies out of people’s mouths, then consider this: 
Patience, or lack thereof
Posted: January 25, 2011 Filed under: breast cancer, drugs, infection | Tags: ben franklin, breast cancer, Burger King, Dumas, Guns N Roses, homophone, love, lymphedema, Othello, patience, patient, Shakespeare, St Augustine, surgery, tennis, Tolstoy 7 CommentsTammy, my lymphedema specialist who I love and adore and
look forward to visiting, asked me a simple question yesterday:
When’s your reconstruction? I told her that the two surgeons’
offices (Dr S and Dr Spiegel) are supposed to be coordinating their
schedules and issuing a surgery date this week. I told her this
Monday afternoon, which for all intents & purposes, is this
week. In fact, this conversation took place in the afternoon of
this week, therefore in the far reaches of said time period. I
thought it was perfectly reasonable to expect to hear back from
those docs with my surgery date. After all, they’ve had since
Thursday to work on it. That’s plenty of time. Giddyup. She laughed
at me for being impatient. 
Good thing I love
and adore her, or else that might have made me mad. She’s gotten to
know me well in the last several months, and we’ve become friends.
She has educated me on the human lymph system and has schooled me
on how to (hopefully) continue unleashing a wicked forehand
(repeatedly, with great force, and multiple times a week) without
ending up looking like the “after” picture in the lymphedema
textbook. She knows I’ve been to a second surgeon and have decided
to venture forth toward yet another surgery, and I thought she knew
that I’m a very impatient patient. I don’t even know why the word
patient, meaning a person who requires medical
care, has be a homophone to the word meaning “the bearing of pain
or difficulty with calmness.” And I might even quibble with that: I
can bear pain & difficulty with calm, I just want to get
through it fast. Anyone who’s been a patient knows it’s hard to be
patient. If you haven’t learned this first-hand, trust me. I know
of which I speak. Lots has been written about patience. Everyone
from Shakespeare to Guns ‘N Roses has addresses this fragile human
condition. My favorite allusion by the Bard to the patience
principle is in Othello: “How poor are they that have not patience!
What wound did ever heal but by degrees?” I feel like Shakespeare
has been peeping in my windows again. I could show him color photos
of a wound healing by degree (but won’t gross y’all out by posting
them here). I have a bar graph, too, showing the wound dimensions
and how they changed, by degree. I’m serious about the photos and
graph. Alexandre Dumas, perhaps the most famous French writer of
the 19th century, knew enough about patience to utter this: “All
human wisdom is summed up in two words — wait and hope.” I’m good
with the latter, not so much with the former. And if it takes
patience to gain wisdom, forget it; I’m out. Not that I’m
particularly impulsive, but once I make a decision and set my
course of action, I’m ready to get to it. Now, not later. Leo
Tolstoy wrote that “the two most powerful warriors are patience and
time.” Egads, I’m double-hosed. We’ve all heard time & time
again that patience is a virtue. I don’t quibble with this ancient
wisdom, I just don’t happen to possess that virtue. I’m sure Dr S
is still laughing at me begging him to let me go home from the
hospital the day after my mastectomy. I was ready to get outta
there and get on with my life. Not so fast, lady. Ben Franklin
wrote that “He that can have patience can have what he wants.” I
always though he was kind of a smart-ass. And why can’t I have what
I want without being patient? Where’s the Burger King motto in all
this? I want to have it my way, and my way is now. Right now. St.
Augustine was probably very patient. He too linked patience to
wisdom: “Patience is the companion of wisdom.” Whatever. I
understand all these ancient guys speaking about patience: the
world moved at a much slower pace back then. They’d probably flip
their wigs if they knew of the modern world and all its speediness.
Imagine those guys seeing a bullet train, or the Autobahn, or even
Loop 610 in Houston, and not even at rush hour. What about a
conveyor belt flanked by factory workers, producing goods from
digital watches to cars in a hurry? Or drive-through food or pizza
delivery? I don’t think any of the pizza chains offers “30 minutes
or it’s free” anymore, but still, when I order a pizza online, Papa
John has it ready in 2 shakes of a lamb’s tail. (such a cute little
expression, right?) The point is that these esteemed writers,
thinkers, and movers & shakers can blab all they want about
being patient, and I will listen (impatiently) and consider what
they say (as I rush off to do the next thing on my list). But I
still want it my way, which is now. 
PTSD
Posted: January 21, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: breast cancer, Greece, infection, mastectomy, politicians, PTSD, recovery, soldiers, stress, tamoxifen, war 14 CommentsWhile brushing my teeth and inspecting the bevy of brown spots on my face (thanks, crazy hormones), I noticed something that made my heart pound, my stomach drop, and my blood run cold. 
Not to be overly dramatic here, but I was scared. Only for a second, but really and truly scared.
I saw a small dark spot on my jammies top, right near my personal “ground zero” or also known as my right chest wall, site and host of the Mycobacterium Olympics 2010.
My first, terrifying thought was that fluid had leaked from my skin at the site and soaked a spot on my shirt.
Not a good thought.
Turns out it was a small piece of fuzz from a red blanket, but it was in just the right location and was just enough darker than the pink jammie top to look like a wet spot.
It’s been 5 months since my last hospitalization for this wretched infection, yet it still has the power to scare the tar out of me and render me speechless, breathless & frantic for a moment at any given time. There has been (knock wood) absolutely no sign of said infection for those 5 glorious months, but it still freaks me out.
I’ve joked before about having PTSD — post-traumatic stress disorder. Now I’m thinking it’s no joke. Then I see this article, from the Telegraph online. Kismet? You betcha.
The article starts with a catchy lead (y’all know I’m a sucker for a good lead): “The debilitating disorder is often characterised by agitation, anxiety, depression, nightmares, flashbacks, and mood swings. It is more often associated with soldiers returning from battlefields who have been shell-shocked by their experiences.” 
Ok, I admit when I read it, I thought “flashbacks” meant “hot flashes” for some reason. Perhaps because I was suffering from one (hot flash, not flashback) at the moment I read that sentence, and my brain went a little wonky from it.
But here’s the important part: a new study (I also love new studies) has found that women diagnosed with breast cancer have an effect similar to PTSD. Researchers site the effect of diagnosis combined with all the unknowns (surgery? chemo? recurrence? etc) equaling a good chance of developing PTSD. They studied 331 women in a Greek hospital and found that 45 percent showed signs of PTSD. What they did not disclose, however, is how they came up with 331 as their sample size. Inquiring minds would like to know. That seems like an odd number to me, no pun intended. The findings were presented at the Impakt Breast Cancer Conference in Brussels. Now not only do I wonder about the 331 women, but also who in their right mind would spell the name of their conference incorrectly? Impakt? Really? Or is that how “Impact” is spelled in Brussels? Why doesn’t the article tell me these things???
Last year there was a similar study done on the possibility of PTSD in heart attack victims. Seems 1 in 6 heart attackers (16 percent of those studied) suffered from PTSD, while some 18 percent of them exhibited symptoms.
Those kinds of statistics confuse me. Does it mean that 16 percent of the total group studied had full-blown PTSD, while another 18 percent of the same group just had some symptoms? Regardless of the answer to that question, it’s interesting (to me, anyway) that the percentage of breast cancer patients suffering PTSD was so much higher than the percentage of heart attackers who suffered.
Anyhoo…
I’m not a researcher and am not involved in any groundbreaking studies, but I’d guess it’s not just breast cancer that renders its victims full of PTSD. What’s really scary is that women still show signs of PTSD even if their “cancer journey” is complete, with successful treatment and remission of the dreaded disease.
Uh oh. So it’s not enough to accept the diagnosis, endure the surgeries and/or treatments, decide on reconstruction, and monitor our health ad nauseum. We also have to slay the disease, but live with the resulting monkey on our back.
Suck.
They also found that women still suffered PTSD and had a poorer quality of life three years after diagnosis and treatment.
Double suck.
I’m imagining fast-forwarding to 2013, when let’s assume for the sake of this argument my infection is a thing of the past and I’m cruising through life with new girls. Euphemistically speaking; I’m not ditching all my friends and finding new ones. I like ’em all too much to ditch ’em.
Let’s imagine that my “cancer journey” is complete in 2013, except I still take my daily Tamoxifen and see my oncologist every 3 months and get body scans quarterly. I am, for the most part, done. But I’m still going to have PTSD? And a crappier quality of life?
The researchers, from the Panteion University of Athens, warn that doctors should watch out for the signs of the condition when they are treating patients with breast cancer. Those Greek people are smart, gorgeous, and all-around awesome, and everyone on Earth would be wise to listen to and emulate them.
They warn: “Knowing that breast cancer patients are susceptible to PTSD, it might be necessary for the field of medicine to create a plan in assisting cancer patients that takes into account the entire spectrum of a patient’s experience with the illness.”
Emma Pennery, from the British charity Breast Cancer Care, said: “The principle that women, and men, will have an ongoing risk of anxiety and depression following a diagnosis of breast cancer is well known, and there is a range of national guidance in the UK which covers the role of health care professionals in providing ongoing emotional support to patients. ”
I’m curious about that “range of national guidance” and wonder if it will make it across the pond. I certainly haven’t gotten any national guidance in all this. That said, if some form of it came my way, I’d probably scoff at the bloated, partisan jibber-jabber as something dressed up to look valuable but in reality is just an oily politician’s idea of pandering to me and those in my shoes.
But that’s probably just the PTSD talking.
Don’t let the door hit ya…
Posted: December 31, 2010 Filed under: baseball, breast cancer, drugs, food, infection, kids, pets, tennis | Tags: 2010, 2011, 40th birthday, baseball, BCAM, beach, breast cancer, champagne, Christmas, coconut cream pie, coffee, crab, cupcakes, dog, food traditions, girlfriends, golden retriever, homemade rolls, Jack Johnson, margaritas, Maroon 5, memories, morphine, New Year, recovery, survivor, swim, tennis, yeast rolls 11 CommentsAs we prepare to bid adieu to 2010, I took a stroll down memory lane in the months since I joined the club of which no one wants to be a member. There were some great moments in the first few months of 2010, or BC (before cancer), and I made it my mission to ensure that the months that followed had the same. Two weeks before I was diagnosed, life was grand, as evidenced by the happy girls in this photo of Yvonne’s birthday dinner at Stella Soli. So fun! Who knew that something wicked this way comes?
The day before my surgery, Macy and I had the great good fortune to meet Jeffrey, a baby mockingbird rescued and rehabilitated by our friends the Hoovers. 
I’m sure I had a million things to do to get ready for the big day, but meeting Jeffrey was high on the list, and I wasn’t going to miss out on the chance to have this sweet little guy hang out with my favorite girl.
An awful lot of people did a whole lot of nice things for my family and me, following my surgery, including but certainly not limited to custom-made cupcakes,
an apropos coffee mug for my cup of Joe (the photo is small but the mug says “cancer” with the red circle & slash mark,
and home delivery of my all-time favorite coconut cream pie. You know you’re in the inner circle if you’re invited to share a slice of my cousin Tom’s homemade heaven. 
One of my first post-surgery outings was around the corner to dinner at the Cremers’ for Keith’s famous crab towers: lump crabmeat topped with a most delectable avocado-mango salsa atop a bed of greens with a citrus-y vinaigrette.
Dinner at their house is always good, because he and Jill are both fantastic cooks and there’s always plenty of bubbly on hand. 
Y’all know how much I love my bubbly.
Some may say I love it more than my kids, but that’s not fair.
We all know it would be a tie.
Two weeks after the surgery, but before the dreaded infection showed up, it was my birthday. Those who say it’s all downhill after 40 may not realize that to a cancer patient, each and every birthday is a gift, and I met birthday number 41 head-on with a welcome embrace: Mexican food, margaritas and the cutest cake ever with my girls. None better. Who cares that I still couldn’t wash my own hair at this point? Not me! I was happy to be upright and out of the house.
A week after my birthday, the bottom fell out of the extraordinary recovery I was experiencing post-surgery. We were at a joint birthday party for 3 June girls (but there were no joints at the party; that’s how rumors get started!), and I didn’t feel good. After two weeks of slowly but surely making progress and feeling better, this was weird. What was really weird was waking up the next day to a huge red rash and blisters at the surgery site on my right side. You don’t have to be a doctor to know that is not good.
In the time that I was hospitalized the first time, Payton made the All-Star team 
and embarked on one of the most memorable summers ever, for baseball. Memorable because the team did so well (District champs, Sectional champs and on to the State championship in Tyler) and because the boys chose to show their support for me very publicly by wearing pink sweatbands all summer. These warriors in pink tore it up on the baseball field and made this mama so proud.
I only made it to a couple of games but got to follow along with all the action thanks to an iPhone app that allowed Trevor to “broadcast” the games to a website that I followed on my iPad from the hospital. I will never forget the look on the nurse’s face when she came into give me a shot of morphine and I told her I needed to wait (I never turn down the good drugs) because I wanted to keep my wits about me and follow the game. Also memorable was the wound-care specialist who had two sons go to State as All Stars who called me from home at 10:30 pm to see if Payton’s team won. They did. 
In between hospitalizations, I spent a couple of hours one day in my backyard in the sunshine, watching Harry frolic in the pool. After being cooped up in a dreary hospital room and feeling lousy, the fresh air, sunshine and unbridled canine joy were just what I needed.
One of the best days of all was in early July, in between hospital visits. I had been to see Dr Darcourt, my third oncologist, and learned that he agreed with all the research Trevor had done: no chemo! Celebration was in order, and when Amy & I ordered champagne at lunch, our sweet waiter at PF Chang’s asked if there was something special to celebrate. He had no idea but we filled him in! 
Another highlight was getting to spend the weekend in Galveston with Christy & Alexis, who were kind enough to teach Macy how to fish. And fish she did: that girl caught the biggest fish of the trip! Later that night, I caught a baby sting ray (not my intent, for sure). I still feel bad about that poor little guy happening by the tempting lure on my fishing pole. All’s well that ends well, though, and with some help from some more seasoned fishermen, the little guy was freed. More importantly, I had a fun weekend with great friends that approximated a return to what most people consider a normal life. 
Despite the idyllic setting, that weekend was just an approximation, though, of normal life, and the infection would puzzle and vex not one but two set of infectious disease doctors. After two more hospitalizations and a new team of ID docs, we got a handle on it, and although the last thing I wanted was to go back to the hospital, and to the Medical Center at 10:30 on a Sunday night no less, I wasn’t alone in the joint. 
Macy loaned me her beloved Froggy to keep me company, and he took his job seriously. He didn’t left my side until I was allowed to go home, and then he went straight from the suitcase into the washing machine lest he brought home any nasty germs from the hospital. We’d had quite enough of those in our life.
Early August was bittersweet: I was on the mend, literally, but still on IV antibiotics at home and not well enough to travel to Boston for our annual vacation. After already having missed my Duke girls’ trip to Lake Tahoe in early June and all of the State championship in Tyler, I was beyond sad to miss this trip, which is always the highlight of our summers. Leave it to Macy, though, to bring me a fantastic souvenir: Continental Airlines had unveiled a new drinks menu on her flight home from Boston, and she got me a pomegranate martini mix and, once home, brought two glassed full of ice, two lime wedges, and one shot of vodka. My favorite girl and I had a welcome-home drink together. Of all the bevvies I’ve consumed, that one may be my all-time favorite.
A few days after school started, and a week or so out of the hospital, Macy & I had tickets to see Jack Johnson play at the Woodlands pavillion. After a string of disappointments all summer, I was determined to make it to the show. It poured rain on us and traffic was horrendous, but we made it and had a great time. What would be an already-sweet occasion was all the better because I was there, upright and out of the house!
I got through the rest of August and September without incident, and was starting to think maybe, just maybe I would be able to actually make and keep some plans that didn’t involve a hospital.
October marked my first foray into Breast Cancer Awareness Month as a survivor. While always aware of the fact that every October is earmarked and punctuated with lots of pink ribbons, it’s a different experience on this side of a cancer diagnosis. I was tickled pink (sorry, couldn’t resist), when Payton’s baseball team played in this tournament. 
Next up was an event that was huge for me: the Witches’ Open tennis tournament at our club. I went into my double mastectomy in the middle of our tennis season, not knowing how the surgery would affect my game. Of course it never crossed my mind that I wouldn’t get my game back, the question was how much and how soon. So playing in the Witches’ Open was a stellar event. Not only did I play with my longtime running buddy, Staci, but we won! I’m pretty proud of our little trophy.
That same night, still basking in the sweet glow of victory from the Witches’ Open, I made a return trip to the Woodlands pavillion for the Maroon 5 concert. Talk about a perfect day: tennis then a road trip & dinner with super fun girls, then the show. That great day slid into a great night, and again I was beyond happy to be upright and out of the house. 
As if this month hadn’t been great enough, the last Friday night in October was the icing on the cake. I gathered by BFFs for the first annual Pink Party. Prepare to be seeing photos of this event every year for the rest of my life. It was that good. Many a nights laying in the hospital bed, I thought about what I was going to do once I finally got well enough to do something for my friends to show my appreciation for all the love and support they’d so freely given during the worst time of my life. The Pink Party was all I had envisioned it would be, and the fact that I was able to put on the dog for my girls was monumental for me. 
Next on the calendar was Thanksgiving, and at the risk of sounding totally hokey, I had an awful lot to be thankful for this year. At first, as we approached the holiday, I tried not to think too much about it, for fear that reflecting back on all that had happened would overwhelm me. Then I realized that’s whacked, and instead of avoiding it, I should be relishing it–every bit of it. Another major triumph for me was making my mom’s famous crescent rolls. I’ve made them before with limited success, but this year, they rocked. 
After Thanksgiving of course was Christmas, and the first ornament to go on our tree was this one: the cocktail shaker that says “Shake It Up.” I intend to do just that in the New Year.
And for the record, it was Macy who picked that ornament to go on first, in my honor. That girls knows me so well. Like most families, we have lots of cute and meaningful ornaments in our collection, but it makes me smile that she chose this one to kick off our Christmas season.
So as 2010 draws to a close, I can’t say that I’ll miss it. Unequivocally, it has been the hardest year ever. But amid the chaos and confusion and abject misery, there were a whole lot of bright spots. Those moments and memories outshine the yucky stuff.
Dear Santa,
Posted: December 22, 2010 Filed under: breast cancer, cancer fatigue, drugs, food, infection, kids | Tags: Bactrim, baseball, Biaxin, bloodwork, bone scan, BRAC, breast cancer, cancer diagnosis, Cefapime, champagne, Christmas, Christmas list, Cipro, collection agency, CT scan, dogs, ER positive, flat chest, genomic testing, good girl, health insurance, HER2 negative, home health, hospital, Houston, infection, infectious disease, injections, IV antibiotics, kids, L-Dex, lymph nodes, mastectomy, minocycline, MRI, PET scan, plastic surgery, post-mastectomy, PR positive, Santa, survivor, tamoxifen, Vancomycin, wound care, wound vac, x-ray, Zyvox 4 Comments
I’ve been a pretty good girl this year. I’ve smiled at fussy babies in checkout lines at HEB. I did my time at the grade-school class parties (not my scene, to say the least). I called the collection agency back — yes, I really did — when they left me a message saying I owed money on a past-due hospital bill that my insurance company says has been paid. I donated nearly-new clothes & home goods to charities multiple times. I helped out with the school fundraiser, even though I really, really, didn’t want to. I’ve said please and thank you and bring my own bags. I was a big girl and good sport about all the trips and baseball games I missed this past summer.
And while we’re on the topic of this past summer, dear Santa, do ya remember all the hell I went through? It all started on April 27, 2010, when I was diagnosed with breast cancer. Talk about an “aha” moment. The timeline quickly unfolded like this: the rest of April and first part of May were consumed with tests, tests, and more tests: BRAC analysis, CT scans, x-rays, PET scan, bone scans and MRI. In case that’s not enough acronyms for ya, there was also the L-Dex and then the genomic typing of ER/PR positive and HER2 negative. More injections and blood draws than my poor left arm’s veins could keep up with (literally; there’s a permanent knot in the big vein). Countless appointments with the breast surgeon (Dr Dempsey, who is on the “nice” list) and plastic surgeon (Dr S, who may be on the naughty list), and 3 different oncologists.
Meanwhile, there was research to be done and crushing decisions to be made as I prepared for surgery. The phrase “life and death” took on a whole new meaning, sweet Santa. There’s a strange juxtaposition between packing school lunches and signing field trip permission slips while also filling out my medical directive and living will. I learned pretty fast how to act normal when everything around me had been turned upside down. I think, dear Santa, I also did a pretty good job of adjusting and adapting to the new normal. I think, fat man, I’m still doing a damn fine job of that. One quick look at my profile tells you that there most definitely is a new normal around here.
Santa baby, I was a good girl after the double mastectomy and the lymph node removal that left me battle-scarred and weary. I was an especially good girl in the face of the plethora of prescription drugs I could have used & abused. I was a diligent girl when it came to choosing green drink over Diet Coke, all-natural hormone-free yogurt over Blue Bell.
Santa, I was a brave and good girl when the nasty infection set up shop in my still-raw chest wall. I endured the 103-degree fevers, 22 days in the hospital, multiple tissue excisions and untold poking & prodding without much complaint. I missed the comforts of home, my dogs & my kids more than words can say, but I only cried twice. And even then, it was when no one else was around to see.
We don’t even need to recount the 18 days during which I was attached to the wound vac 24-7. I would really like, dear Santa, to permanently erase that memory from my grey matter, por favor. But I would like to remind you that I was a trouper during the home health days, and all those hours that were consumed with wound care and the administration of IV antibiotics. And while I’m at it, can I get a little shout-out for not killing Dr S, even though he probably deserved it?
Oh Santa, I do crave some credit for all the antibiotics I’ve endured — and continue to endure. From the Vancomycin to Cefapim, from the Cipro to the Zyvox, from the Biaxin to the Bactrim and Minocycline. Those last two will be part of my daily routine for a few months yet, but I’m already looking forward to the day in which I don’t have them on my kitchen counter anymore.
So Santa, how about we make a deal? I’ll set out all the milk & cookies you want in exchange for one little thing. All I want for Christmas is to have it easy for awhile.
The Pink Underbelly 