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.”
I like funny t-shirts. I like snarky, funny t-shirts even better. Or is it redundant to say “snarky” and “funny?” Are there people who don’t think snarky is funny? If so, I have no use for them. Trevor’s grandma, Petie, had a cute little needlepoint pillow on her couch in the sitting room of her Salisbury, North Carolina, home that says “If you don’t have anything nice to say, come sit by me.” I’ve always ascribed to that point of view.
I don’t have a picture of Petie’s pillow, but found this one by using the Google. Now I’m wondering why in the world I don’t own one of these pillows? It would make me smile every time I spied it. It’s the little things, people.
For those of you who are uninitiated into all things Red Sox, that foxy number 46 is my boy crush, Jacoby Ellsbury. He now wears number 2 on his jersey, though looks no less foxy. That’s JD Drew crouched next to him, close enough to whisper in Ell’s ear (lucky bastard). I’m sure they were discussing some serious strategy, or maybe making fun of Dora (aka Alex Rodriguez) who is such a tool and deserves to be made fun of at every possible opportunity.
But I digress.
Here’s the real reason for today’s post (although it could easily become all about Ells. Last season was a long, dry boring one for me because Ells was hurt. Not just hurt, but rehabbing in Arizona, so not even in the dugout and available for close-ups or slow pans by the ever competent NESN camera guys. It was a long season indeed. But Ells is back and ready for action and hopefully lots of on-screen time.)
But seriously, back to the real reason for today’s post.
Look what I found.
But wow, what bad luck to have found it so close to the Resurrection, instead of during the long months of walking around with a chest flat enough to play quarters on, with no explanation. Ok, that is some seriously bad sentence construction, but you get the drift. I’ve had a freakishly flat chest for a long time, and have longed for a shirt that tells the world that change is underfoot. Or, undershirt, as the case may be. I got that chance with my “cupcakes” shirt, but I can’t very well wear that every day. I hate doing laundry, and wearing my cupcakes shirt every day would require a lot more of that chore.
So I probably need the “under construction” shirt, too. Although, can someone please explain to me why the shirt is modeled by a guy???
Now that is just weird.
But I still want the shirt. Wonder how fast I can get it?
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.
Except, I won’t make you look at the before pics, because they’re pretty gross, and that would just be mean.
For the last several nights I’ve been waking up in the middle of the night with questions to ask Dr Spiegel today about my upcoming reconstruction. I like how “upcoming reconstruction” sounds so formal and important, and perhaps a teeny bit ostentatious. As opposed to the reality of a terrifying, bloody mess. But I didn’t have it together enough to put a pad & pen by the bed to actually write the questions down, and now I can’t think of them (anyone have any suggestions? Lemme know. I know there’s stuff I’m supposed to be asking her about but can’t for the life of me find that stuff).
My brain must be working overtime, especially at night, when it should be resting and refueling so it’s ready to assist me with my two most basic tasks: impressing Payton with my trivia knowledge while we watch “Cash Cab,” and helping me answer questions from Macy like, “If a banana is a fruit, where are its seeds?”
I hate those kinds of questions. I really should know the answer. It’s there somewhere, deep in the recesses of my brain, but it’s buried by all this cancer ca-ca. If my brain were being depicted by a pie chart, there would be normal-sized pieces of pie for the kids, the home front, our schedules, tennis, world peace, and such. Then there would be a gigantic piece for cancer ca-ca.
I hate that the cancer ca-ca takes up such a big piece of the pie. I like pie. But I don’t like this pie. If only the pie chart were about pie, instead of all that other stuff. That would be a really good pie chart.
My Uncle Wilford (my mom’s older brother) used to say he liked two kinds of pie: hot and cold. Me too. And I hope Uncle Wilford is having a piece of both right now, at a beautifully set table on a puffy white cloud with his two sisters, my mom and Aunt Margie, sitting beside him. All the pie they can eat. And no pizza. Uncle Wilford said he didn’t like pizza because he was older than it. Funny guy. Miss him.
But back to the cancer ca-ca. It fills my brain stealthily, easily, and constantly. I’m usually pretty organized, but it infiltrates. I tend to keep a good handle on the various comings & goings of the members of this family, and rarely do I drop any of the balls I juggle on any given day. Not bragging, just saying. I’m usually up to whatever this life of mine throws at me. But I’ve been dropping balls lately, and I don’t like it.
Macy was invited to a birthday party recently, and I forgot to add it to the calendar, and she missed the party. Oops. Then I looked right at the calendar to assess the day’s tasks but still forgot to take Payton to his weekly hitting lesson. Drat. Then there was the test I forgot to make sure Macy studied for, and she got a bad grade. She typically doesn’t get bad grades, so it was upsetting for her. Her teacher sent home the study sheet for the re-take, which Macy dutifully put on the fridge with a magnet. I saw it there but it never even registered in my brain, so we didn’t work on it. At all. And then, the re-take was upon us. Macy remembered as we were walking out the door to go to school. Damn, damn, damn. I dropped another ball. I was tempted to advise her to just tell her teacher it’s my fault, and that I’m too busy with all this cancer ca-ca. But I didn’t. I hung my head for a minute, cursed myself out under my breath, kicked a stray tennis ball on the garage floor, then reminded myself that it’s one test in the 3rd grade. Well, technically two tests, since she failed the first one and had to re-take it, but again, let’s stay on point here and recognize that it’s no big deal. I wrote her teacher and note and fessed up, told her it was my fault and that she & I both know that if it were solely up to Macy, she would have aced that test. Her teacher wrote back and said pfffft, don’t even worry about it; as you can tell from the attached progress report, one test isn’t going to bog her down. She will survive, and so will I.
Thank you, Mrs. Motal.
From the time I wrapped my head around this wretched diagnosis, I’ve been determined to do all that I can to ensure that cancer doesn’t become me, doesn’t define me, doesn’t defeat me. Cancer may win a skirmish here and there and may make me feel really crummy; it may open the door for a nasty infection that brought on another epic battle; it may deposit more grey hairs and new wrinkles; and it may cause me to miss a thing or two on the master schedule. Cancer will most certainly cause me some sleepless nights. But cancer will not defeat me.
When I was a kid, I was afraid of two things: the seeds & pulp in a halved cantaloupe, and going over bridges. I have no earthly idea why the cantaloupe scared me, but it did. I remember watching my mom cut the fruit in half and dig out the seeds & pulp with a big spoon then flip the gunk into the sink to go down the disposal. Creepy.
The bridge thing started early. We used to go to a local park a lot as a family when I was a kid, and there was an old, wooden bridge with wide planks (maybe even railroad ties?) and a shallow stream running underneath. The wood was worn, and there were spaces between the planks, between which the stream could be seen. I held my breath all the way across, every time.
I’m not afraid of the cantaloupe seeds & pulp anymore, but bridges…a little bit. The Ship Channel Bridge in Houston gives me the vapors, and driving from Houston to New Orleans includes a series of loooong bridges over mysterious-looking bodies of water. I’m not crazy about the concrete jungle flyover freeways around here, and the Beltway going toward I-10 West has a pretty high on-ramp that gets my heart beating a little faster. I don’t have to hold my breath anymore, but I’m still just a teesny bit uneasy about bridges.
I was reminded of the cantaloupe thing the other day as I cut into one and cubed it up to serve with dinner. I chuckled to myself at my childhood self and fears, and in my head, felt some pride at only having had two little fears. Monsters under the bed never bothered me, nor did the amorphous Bogeyman. I didn’t need a nightlight, and don’t mind things that go bump in the night.
When my kids were tiny, I was a little bit afraid of becoming the victim of a violent crime. The idea of leaving those precious babies motherless unnerved me. Then my own mom died, while my kids were still pretty tiny, and I quit worrying about violent crime and began to fear cancer.
Little did I know that not even 5 years after losing my mom to stupid, wretched cancer, my newest, biggest fear would materialize.
Being diagnosed ahead of the curve, i.e., at a young-ish age, is a surreal experience. I remember well the feeling in the pit of my stomach when I got the phone call on April 26th to say that the biopsy indicated a malignancy. I’ll never forget Nurse Sharon telling me that Dr Dempsey needed to book some time on my calendar, which turns out to be a nice way of telling me to come and see them the very next day so they can hand me a diagnosis that will change my life.
When that fateful call came, Macy and I were shopping for a birthday gift for my cousin, and I had to pretend that everything was ok because I didn’t want to alarm my little girl. Trevor was out of town but en route home, and after I got the call we kept missing each other as he boarded a plane or I was in the car with the kids and not able to speak freely. We resorted to exchanging texts to convey the most horrible of news.
The kids and I went on to my cousin’s birthday party, me with a big secret but determined to put on a happy face and not ruin the celebration. It seemed torturous at the time to be unable to talk to anybody about what I’d just learned. In hindsight, however, it was probably a good thing because it gave me time to process the steaming pile of bad news I’d been served.
It took a couple of days before I really wrapped my head around the fact that I had breast cancer. The more people I told, though, and the more times I actually said the words, “I’ve been diagnosed with breast cancer,” the more real it became. Before long, the awful reality had set in, and I transitioned from shock to action.
Dr Dempsey has a rule of not accepting a patient’s decision on which surgery option–lumpectomy, single mastectomy or bilateral mastectomy–until at least 3 days after she delivers the diagnosis. I made up my mind pretty fast, but waited until 3 days had passed before I called to tell her. I’ve never regretted the choice I made.
The bottom fell out of my world, and many things changed with my diagnosis. My fear of cancer was one of those things that changed.
I don’t know how it happened or why, but I stopped fearing cancer. Maybe because it became such a huge part of my life, it lost some of its scariness. Maybe by being forced to confront it, and the myriad ways it had infiltrated my life, I became braver. Or maybe I just got sick to death of the damn topic. The more I learned about it, the less scary it became. Knowledge truly is power.
And while cancer is still scary, it doesn’t scare me. Going head-to-head with the beast has taught me an awful lot about myself. Most of it good. I know I can endure a lot, I know what’s really important, and I know that should the disease mount a counter-attack on my battle-weary body, I’ll be armed and ready. Not scared, but ready.