An appointment and some art

Lovely surprises lurk around every corner.

Sounds like a corny message from a fortune cookie, right? Certainly not what you expect from this little blog, which is typically full of snark. Allow me, if you will, to deviate from the gnashing of teeth, shaking of fists, and renting of garments usually contained within this site.

I had an appointment at the med center this morning to have my wonky thyroid checked out. I love the fact that I live in a city that is home to the world’s largest medical center and that world-class care is available to me.tmc_map

Some fun facts about the med center:

  • some 160,000 people visit TMC every day
  • that equates to 7.2 million people a year (more than the populations of Los Angeles, San Francisco, and Houston combined)
  • 106,000 people work at the med center
  • 50,000 people are students at TMC
  • TMC is made up of 21 different hospitals, 13 support organizations, 8 academic and research institutions, 6 nursing programs, 3 public health organizations, 3 medical schools, 2 universities, 2 pharmacy schools, and a dental school
  • this beast of an institution is spread across nearly 1.5 square miles, and the 18 miles of public and private streets surrounding it would take the average person 6 hours to walk in its entirety
  • the highest concentration of life-sciences professionals in the country live near and work at TMC
  • TMC contains 7,000 patient beds; if stacked up, the beds would stretch 1.65 miles or 7 times the height of the Empire State Building
  • a baby is delivered every 3 minutes at TMC
  • a surgery is performed every 3 minutes

Indeed, everything is bigger in Texas.

Ok, so being the most kick-ass med center isn’t enough. TMC also throws up some pretty nice artwork–hence the lovely surprise. This morning while hoofing it from the endocrinologist’s office to the radiology department (a portion of the 1.5 square miles mentioned above) for an ultrasound, I passed some unusual artwork and stepped in for a closer look. Picasso said, “The purpose of art is washing the dust of our daily life off our souls,” and I was all for giving my soul a little spit-shine.

The minimalist approach of the first piece caught my eye, with its interesting color combination and deft brushwork. The combination of long, thin brushstrokes and fat, wide ones hold a lot of appeal. IMG_3281

The second piece is much busier and conveys a very different energy. The squiggles suggest movement and a fast pace, and the composition suggests the artist has a lot to say and says it quickly.

IMG_3283

Painting number 3 is a bit more purposeful and controlled. The brushstrokes suggest a certain scale to me, and my first instinct is big. Or perhaps the suggestion of large size comes from the predominance of orange, which to me is a color that speaks out loud.

IMG_3286

Back to a minimalist style for the fourth piece. The ratio of color to white space is quite different from the other pieces. While the pieces share a similar color scheme, they are vastly different.

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The fifth painting could have been done by the same artist as painting number 4, with its similar colors and use of white space. The restraint that comes from the white space impresses me, as my instinct would be to cover a canvas with as much color as possible. Restraint has never come naturally to me. IMG_3290

Hmmmm. Very intriguing. I’m no art critic, but I like what I see, and I definitely like these pieces.

Would you believe that each piece was painted by a resident of the Houston Zoo?

The first piece was painted by Shanti, an Asian elephant who, according to her artist bio, is pretty serious about her craft. She dips her paintbrush into sand to give her paintings a mixed-media effect, and unlike the other elephant artists, she curls her trunk around the brush rather than holding it with the “finger” at the end of her trunk. She employs a keen concentration while painting and then likes to unwind by horsing around in the pool (she’s known for swimming in circles to make waves while the other members of her herd are in the pool).

The “busy” feel of painting number 2 can likely be attributed to its artist: an otter named Wednesday. This playful painter likes to walk through a puddle of paint and then step onto her canvas, hence the stippled look of the predominant green paint. She has been known to take a break from painting to go for a swim, then return to her canvas and let her wet feet create a true watercolor. Her motto: Will paint for fish.

The purposeful, controlled painting number 3 belongs to another Asian elephant named Methai. Before becoming a painter, Methai was a circus performer in Thailand. She’s a musician as well as an artist and can play several instruments, including the harmonica. Methai is the most prolific elephant artist at the zoo, and like Shanti, she too is all business when she paints: she is known to squint her eyes in concentration.

Painting number 4 was done by Harry, a White-faced Saki monkey. He’s a tree-dweller from the South American rainforest who mastered the art of painting quickly. He works fast, often completing his masterpieces in mere minutes, and tends to be pretty laid-back, although rumor has it he sometimes gets a bit frenetic about his work and ends up with paint all over him once he leaves the studio.

Credit for the last painting on exhibit at TMC goes to Cali the sea lion. The smart, playful sea lions are a crowd favorite at the Houston Zoo, and when Cali isn’t putting on a show or hunting for fishy treats, she’s churning out paintings like the one on display at TMC. She holds a paintbrush in her mouth to create her masterpieces, then hops back into the pool to frolic with her buddies.

Nietzsche said “The essence of all beautiful art, all great art, is gratitude.” After seeing this beautiful art, this great art, I’m grateful for Shanti, Wednesday, Mathai, Harry, and Cali.

 

 


Drive-by doctoring

Coming soon to a hospital or surgery center near you: drive-by doctoring.

It’s the latest trend in chicanery, in which some health-care workers (namely high-dollar specialists) insert themselves into a case in order to jack up their revenue.

googleimages.com

googleimages.com

It’s come to light thanks to this article in The New York Times. Here’s the long-story-short: “In an increasingly common practice that some medical experts call drive-by doctoring, assistants, consultants and other hospital employees are charging patients or their insurers hefty fees. They may be called in when the need for them is questionable. And patients usually do not realize they have been involved or are charging until the bill arrives.”

Here’s how it typically works: you have a medical problem, say breast cancer, that needs to be fixed. You see a specialist and/or a surgeon and do your research. You might even check with your health-insurance provider to ensure that your doctor and procedure are covered. Your doctor’s office also ascertains pre-approval and pre-certification for your surgery. You do your due diligence and assume all your ducks are in a row. Meanwhile. you are consumed with getting your life in order before your surgery date; in my case, in the 2 weeks between being diagnosed with stage II invasive breast cancer at the age of 40 and undergoing a bilateral mastectomy, I stocked the house with groceries and washed every item of clothing in the house; I arranged for rides to & from school and extracurricular activities for my two elementary-school-aged children; I submitted myself to a battery of tests and scans in a series of appointments that constituted a part-time job; I met with my kids’ teachers and guidance counselor to inform them of what was going on at home; I answered phone calls and emails from concerned friends and family and endeavored to keep my people informed of my situation; and I lay awake at night, despite my exhaustion, wondering what the hell my very uncertain future held in store for me.

I did not, however, think to ask if the army of health-care providers and the plethora of services my cancer required were all in-network. I was rather busy wrapping my head around my diagnosis and ensuring that I did everything I needed to do, for myself and for my family. The last thing on my mind was whether I’d get screwed by out-of-network providers charging 20 to 40 times the going rate.

Surprise! Here’s a huge bill for services you neither requested nor consented to, and not paying will ensure sleepless nights, stressful budgeting sessions, and  harassment by collection agencies.

Luckily, I had great health insurance at the time I “waged war” on my cancer. Luckily, I happen to live in the epicenter of research and healthcare institutions; my city has some of the best medical schools and the best cancer-care facilities, which correlates to an abundance of first-class docs and hospitals. Luckily, I did not fall prey to drive-by doctoring during my cancer “journey,” but am nonetheless considering this a cautionary tale.

In the NYT article, a man named Peter Drier found himself recovering from back surgery and facing a $117,000 bill from an “assistant surgeon” he never met. Drier did his homework and researched his health-insurance coverage before his surgery, but still found himself a victim of drive-by doctoring.

Patients have their hands full before their surgeries, and some providers are looking to shore up revenue that is increasingly reduced by economics. It’s the perfect storm. Furthermore, hospitals that join an insurance network are not required to provide in-network doctors or services. New York has enacted legislation to protect consumers from drive-by doctoring; let’s hope other states follow. Until then, it’s buyer beware.


Hero dogs

Today, on the 13th anniversary of the terrorist attacks, I’m thinking of the dogs who assisted in the search & rescue at Ground Zero in New York City. Some heroes have 4 legs. 

Photographer Charlotte Dumas has profiled many of those 4-legged  heroes in her book RetrievedIt’s on my wish list.

One of the dogs in Retrieved is Bretagne (pronounced Brittany), a Golden Retriever who is reported to be the only surviving rescue dog from the Twin Towers disaster (one other dog, a springer spaniel named Morgan who worked at the Fresh Kills site at Staten Island, is still alive). A Golden Retriever is also on my wish list, BTW.

newyorkpost.com

newyorkpost.com

Bretagne was trained in and lives in a suburb near mine in the great state of Texas. Her very first assignment was search & rescue at Ground Zero. She was just 2 years old when she was deployed, along with her handler Denise Corliss.

newyorkpost.com

The absence of any human survivors at Ground Zero was unimaginably difficult for everyone involved in the recovery effort — including the dogs. Despite the fruitless search, the dogs worked tirelessly among the perilous conditions that included broken glass, twisted metal, and hazardous emissions. The human searchers were protected by heavy gloves, boots, and masks; the dogs, however, relied on their bare paws for balance, their exposed claws for traction, and their sensitive noses for any whiff of human remains.

newyorkpost.com

newyorkpost.com

Bretagne spent 2 weeks working 12-hour shifts in the dangerous conditions. Her handler recalls that on her very first search, Bretagne slipped on a metal beam that was wet from the fire hoses that still doused the smoldering wreckage. Corliss was nervous, but said that Bretagne “pulled herself  back up onto the beam with her front paws and continuing to sniff intently as if nothing had happened.”

Another rescue dog perseveres among dangerous conditions

Another rescue dog perseveres among dangerous conditions

Corliss recalls how Bretagne seemed to make a point of putting herself in front of weary first responders. Several times, Bretagne left Corliss’ side to greet shell-shocked firefighters. Corliss gave the command for Bretagne to come back, sit and stay, but was rebuked. Corliss was shocked that the usually well behaved dog disobeyed: “I was surprised that she wasn’t listening to me, but she really wasn’t — it was like she was flipping me the paw.”

One of the veterinarians who looked after the search & rescue dogs at Ground Zero founded the Penn Vet Working Dog Center. Dr Cindy Otto realized that the dogs working at Ground Zero supplied much more than search & rescue or recovery: they provided great comfort to the first responders. She says, “You’d see firefighters sitting there, unanimated, stone-faced, no emotion, and then they’d see a dog and break out into a smile. Those dogs brought the power of hope. They removed the gloom for just an instant — and that was huge because it was a pretty dismal place to be.”

Animal Planet

Animal Planet

At the Penn Vet Working Dog Center, the puppies in training are named after the dogs who worked Ground Zero. Bretagne met her namesake, who now lives with a man who has Type 1 diabetes. Bretagne 2 alerts her new master if his blood-sugar levels get out of whack.

newyorkpost.com

newyorkpost.com

Cheers to Bretagne and the next generation of  4-legged heroes. May your treats be plentiful and your belly rubs never-ending.


It’s not quite like that

Joanna Montgomery gets it. She really gets it. It’s a common misconception, yet something that those of us who’ve faced it head-on know. We know because we learn the hard way. Despite the Pollyanna snow job by pink-ribbon celebs like Giuliana Rancic and Amy Robach, having a mastectomy does not mean you get new boobs. Not even close. In this article, Montgomery explains it, succinctly and completely.

“There’s a huge misconception among the general populous about what it means to have one’s breasts removed and replaced with artificial ones (if they are replaced at all). When speaking about my upcoming surgery, I had many well-meaning people say things like, ‘Well at least you get new boobs!’ and, ‘Your husband must be so excited… has he picked ‘em out yet?’ Yeah, well, it’s not quite like that. Not at all, in fact.”

Yeah, it’s not at all like that.

Here’s how it really is, as Montgomery so eloquently explains: “It seems that those not in the know tend to equate post-mastectomy reconstructed breasts with augmented breasts or ‘boob jobs.’ Nothing could be further from the truth. You see, augmented breasts are actually real live breasts with nipples and healthy breast tissue behind which silicone or saline implants have been placed, either under or above the muscle, thereby pushing them up and out. If augmented breasts didn’t look damn good, breast augmentation surgeries would not be so, ahem, popular. So even though augmented boobs are often called ‘fake boobs,’ they’re really not. I, on the other hand, do have fake boobs (or ‘foobs,’ as I have become prone to calling them).”

I have foobs, too. Not implants, but foobs made from my own flesh and tissue carved from my belly via a 17-inch-long incision.

Like Montgomery, I am thankful to have had skilled surgeons at the helm of my reconstruction, and I’m thankful to have good health insurance (although the out-of-pocket expenses are still hefty). Sometimes honesty about our foobs is interpreted as being ungrateful. Montgomery says, “those of us who either opted to have mastectomies as a preventative measure, or had mastectomies as a life-saving measure, aren’t excited about our ‘new boobs.’ In truth, we’ll never be the same. We see ourselves differently now when we look in the mirror, because we are different, inside as well as outside.”

 

 


The wrong approach?

In this article for The New York Times, Peggy Orenstein addresses one of the many tricky topics surrounding breast cancer: to remove or not remove the “unaffected” breast?

It’s a tricky topic because the research and prevailing medical consensus are in direct opposition to gut instinct. Research says a bilateral mastectomy in patients with cancer in just one breast has little impact on survivability. Doctors say the odds of surviving low-grade noninvasive breast cancer is the same whether we undergo a lumpectomy or a mastectomy. But our guts often say “lop em both off.”

That’s what my gut told me to do, even after extensive research and number-crunching. My gut instinct leaped immediately to a slash-and-burn tactic. My darling breast surgeon required me to wait at least 3 days before making my decision on the lumpectomy vs mastectomy debate; I complied but my decision was made in the first 10 minutes of grasping my diagnosis. My gut told me to opt for the bilateral mastectomy.

I suppose this puts me in the category of women opting for a CPM, or contralateral prophylactic mastectomy. The experts whom Orenstein spoke to about the CPM debate refer to the increase in women undergoing CPM as “epidemic” and “alarming” and believe it is driven by women not fully understanding the math. Girls have always been bad at math, right? That’s the message I got, growing up in the 1970s in suburban America.

2013 study done by Boston’s famed Dana-Farber clinic revealed that women younger than 40 with no increased genetic risk who had cancer in one breast believed that “within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.”

Upon my diagnosis, I understood the math. It wasn’t easy and it was confusing. It took time and effort, but it was not beyond me (having a math guru in the house helped tremendously, but the point still stands).  I understood that my chances of successfully removing the cancer in my “affected” breast was the same whether it was done via lumpectomy or mastectomy. I understood that my chances of developing the same cancer in the other breast were slim to none, because, as Orenstein says,”cancer doesn’t just leap from breast to breast.” I understood that low-grade noninvasive lazy cancers don’t typically become deadly; it takes a cancer that metastasizes to do that.

I also understood that a bilateral mastectomy is not an easy surgery. Not by a long shot. As Orenstein so colorfully describes it, “breasts don’t just screw off, like jar lids.” Undergoing a mastectomy involves not only losing the breast itself but also (typically) the nipple and areola, as well as the lining of the chest muscles. Factor in the JP drains that are snaked into the traumatized chest, just to add insult to injury. I couldn’t lift my arms for days after my mastectomy and needed help with the simplest things, such as brushing my teeth and applying chapstick. I needed a new, temporary wardrobe of tops that buttoned or zipped up, because lifting my arms over my head to put on or take off a shirt was a no-go for my battered upper body. I needed help — lots of help — which doesn’t jive with my stubborn and independent countenance.

I knew that choosing the harder road of a bilateral mastectomy over the easier, less-invasive lumpectomy did not increase my odds of surviving breast cancer. At least according to the studies. I knew that a mastectomy is much riskier than a lumpectomy. I knew that recovery would be much harder and more time-consuming. Nonetheless, my gut told me to take that more difficult road. My gut was right.

Orenstein spoke to Steven J. Katz, a University of Michigan professor of medicine and health management. He studies medical decision-making, and has found that people tend to react from the gut when confronted with a diagnosis because we are wired to make “fast-flow decisions” that make us want to flee. Understandable to anyone who has been on the other side of the doctor delivering bad news. Upon diagnosis, Orenstein recalls feeling “as if a humongous cockroach had been dropped onto my chest. I could barely contain the urge to bat frantically at my breast screaming, ‘Get it off! Get it off!'” Her version involved a giant cockroach; my version involved a scorched earth.

Dr. Katz says that doctors need to understand how our gut reaction affects our post-diagnosis decision. He speaks of “the power of anticipated regret: how people imagine they’d feel if their illness returned and they had not done ‘everything’ to fight it when they’d had the chance. Patients will go to extremes to restore peace of mind, even undergoing surgery that, paradoxically, won’t change the medical basis for their fear.”

It is a paradox: our intellectual self versus our gut.

Orenstein points out that “it seems almost primal to offer up a healthy breast to fate, as a symbol of our willingness to give all we have to and for our families. It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one ‘just in case’ or for the sake of symmetry.”

While it may be hard to imagine, there’s no way to predict how one will react to a cancer diagnosis. All the studies and statistics are worthless in the face of the worst-possible scenario, which is facing cancer. I was 40 years old, with 2 kids under the age of 10, when I faced that scenario. Of course I thought of them and the possibility of leaving them motherless and rudderless. Having lost my own sweet mama brought that into even clearer focus. Perhaps my decision to undergo a CPM was based more on emotion than on rational thought. No doubt my gut was driving that bus.

But guess what? My gut is a careful and prescient driver. In steering me toward the more-radical surgery option, my gut saved me. Maybe saved my life, but definitely saved me from undergoing a second mastectomy, one that would most definitely not have been of the CPM variety.

My “unaffected” breast had cancer, too. And Paget disease to boot. Nothing had showed up on any of the myriad tests or scans I’d had before my mastectomy. It was the surgical pathology on the “unaffected” breast that finally revealed those cancers. How long would those cancers have grown, unannounced and unaccounted for, had I not followed my instinct and listened to my gut? I don’t like to think about that.

I’ve learned — the hard way, of course — that I’m one of those medical weirdos whose body does not conform to standard protocols. I’m the kook who gets the weird stuff; to wit, Paget disease accounts for a mere 1 to 4 percent all breast cancers, according to the National Cancer Institute. Ditto the post-mastectomy infection I contracted. Who gets a microbacterium fortitum?? So few people that my infectious disease team — yes, I had a team of ID docs — still wonders where the hell that originated.

We medical weirdos don’t fit into studies or facts or figures. We are the ones who keep their doctors up at night, scratching their heads and wondering what?? what?? what is going on here?? We are the ones for whom the “if it can go wrong, it will” axiom applies. We are the ones who make other people reassess the shittyness of their situation (you’re welcome, by the way).

We are the ones who follow our gut and don’t look back. Is that the wrong approach? Not for me. follow-your-gut

 


No end to the drug therapy

Misguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”

Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.

Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.

However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.

I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.

It’s never enough.

It’s never over.

While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.

Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.

My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.

The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.

All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?

It’s never enough.

It’s never over.Sad-face


Post-surgery pathology

It’s clear.

All clear.

Whew. unnamed-1

At my one-week post-op visit today, I got a copy of the report and learned a whole bunch of new words: adnexa, fimbriated, myometrial, serosa. Those will come in handy next time I play Scrabble.

My endometrium was described as “tan and lush;” my uterus “tan-pink, smooth, and unremarkable.” I guess when it comes to compliments, the radiologist giveth, and the radiologist taketh away.

That’s ok. Whether tan and lush or unremarkable, those trouble-causing parts & pieces are gone. Good riddance. Cheers to good news and to those three little words: No malignancy identified.

 

 

 


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