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.
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.
Yesterday I bid farewell to my uterus, cervix, ovaries and Fallopian tubes. They are gone, baby gone. Well, actually they’re in lab somewhere in the Medical Center, undergoing testing. Hopefully no evil this way comes.
The surgery was easier than I expected (although anything will be, compared to what I’ve endured in the past). As usual, the care was exceptional at The Methodist Hospital. Its slogan is “Leading Medicine,” and those folks practice what they preach.
I was on the labor & delivery floor, which was nice and quiet and had the added bonus of allowing me to peep at the newborns in the nursery as my IV pole and I walked laps around the floor.
One tiny complication (you didn’t really think I’d get through surgery without one, did you?!). Last night my blood pressure dropped and stayed low — 80s over 50s — all night. I must admit, I felt kinda puny. Watching those numbers hover so low as they checked me every two hours was a bit worrisome, but after two bags of IV fluid and a few more laps around the floor, it was back to normal this morning. I was back home barely 24 hours after checking in for surgery.
I’m feeling a bit smug, I must say, after the nurse told me another patient had the exact same surgery as I and she’s nowhere near ready to go home. She didn’t even want to get out of bed, while I was slipping on my flip-flops and packing up my bag to get outta there. To each his own.
Here’s my take on the latest Disney film, but first a disclaimer: I hate Disney films.
Now, before you boo me and flame me and hate me, let me clarify. I hate that Disney films have traditionally relied on the death of the main character’s mother to build the character arc that defines the movie.
Dealing with the death of someone significant (in my case, my sweet mama) sucks. It really sucks. Going to the movies or employing other forms of escapism should distance one from that suckiness, not magnify it, and I’ve been smacked in the face by Disney’s tired mechanism again and again. However, my favorite girl wanted to see Maleficent and she wanted me to go with her, so I girded my heart against Disney’s mean mechanism and took my girl to the movies.
Sufficiently girded, I was crazy-curious about those cheekbones the makeup artists gave the titular character.
Yowza. That bone structure is sharp. And somewhat distracting.
And those lips.
I am enough intrigued by Maleficent’s messages to look past Disney’s transgressions upon my heart. Most intriguing in this case is the idea that the bad guy (or in this case, the bad girl) isn’t always bad. Or perhaps has good reason to be bad. The line between good and evil is blurred. And while that may be troubling, it’s realistic.
It’s not just realistic, it’s also updated and reflective of modern life, not “once upon a time.” The fairy tale transcends a bedtime story to be indicative of real life. Aren’t we in essence creatures who endeavor to be “good” and do the “right thing” even though forces beyond us sometimes conspire against us? Or is it just me? My instinct when someone cuts in front of me in line is to tap them on the back and tell them to get the hell behind me, to take their turn. Instead, I smile sweetly and gently point out that I believe I was there first. Why, just yesterday while waiting for new tires I saw not one but two different people look at the sign on the door to the work area — the one in big, red letters that says DO NOT ENTER WORK AREA. FOR COSTCO TIRE CENTER EMPLOYEES ONLY — and open the door. They stopped to read the sign, then tried to enter the work area anyway. My first thought was to ask them if (a) they truly do not understand the sign; or (b) if they truly think the sign and its message do not apply to them; or (c) if they truly are so important and pressed for time that they cannot wait for the tire-center employee to leave the perilous work area and come to the safety of the lobby area to serve them. However, I chose none of those options; I minded my own business and let the tire-center employee deal with it. I want to be polite and nonviolent, yet the idiots around me present a challenge. I want to be “good” but have lots of reasons to be bad. I want to be nice, but life gets in the way.
Maleficent knows what I mean. She feels my pain. She’s a sweet, orphaned fairy (gorgeously portrayed as a young fairy by Isobel Molloy) who has yet to grow into those cheekbones (but early on masters the art of choosing the right shade of red for her lips) and who smiles a hugely charming smile as she frolics with her woodland-creature friends.
Our sweet orphaned fairy goes about her business in the Moors and meets a boy who becomes her friend but later betrays her. He drugs her and takes something precious from her (and no, you did not imagine the hints of rufies and date rape here). His betrayal creates the proverbial woman scorned. As the movie’s narrator points out, the antagonist and the protagonist are one and the same. That blurred line between good and evil reappears.
While Maleficent appears to be a bitter, resentful she-beast hell bent on extracting revenge from the man who wronged her, we could also ask, what about that man? What is his role in her transformation? Is his lust for power and his drive for the throne a cautionary tale about the repercussions of overwhelming greed and hunger for power?
I think so. But I digress.
Whether the woman scorned was born or made into the role of the villain is irrelevant in the face of the idea that maybe, just maybe, we all have a touch of both good and bad in us.
And maybe, just maybe, it’s ok to root for a female bad-guy as we’ve longed rooted for the male versions. They may be bad, but we sympathize with them. We kinda identify with them. Who among us has not been wronged or hurt by someone we love? That’s not to say I want to hang out with Hannibal Lecter or that I condone his predilections, but there are aspects of him that are intriguing, interesting. He’s smart and funny and pretty damn dignified for a man in a scary-looking metal mask. He’s also quite kind to Clarice. I despise him but am intrigued by him. Blurred lines.
Many messages are at work here: that things aren’t always as they seem. People (and fairies) are complicated. Unchecked power and greed lead to ruin. And perhaps more importantly, that the dichotomy between good and evil is not so black and white. Blurred lines.
Yesterday I turned 45. I’m on the far side of middle-aged and am four years into life after cancer. Whatever that means. I suppose I don’t have any idea what life after cancer means, other than the fact that nothing is ever the same afterward. In honor of growing another year older, I decided to read a “young adult” book, to see if I still knew what is young, hip, and/or cool. I had read several glowing reviews of The Fault in Our Stars by John Green. Despite those glowing reviews, I initially resisted reading this book, because I didn’t want to read a book about teenagers with cancer.
But that’s the thing about The Fault in Our Stars. It’s not about kids with cancer. The main characters, Hazel and Gus, have cancer, but the book is about so much more than their respective diseases.
I wondered how Green could write so convincingly and wrenchingly about the role that cancer does play in the book, if he had not been touched by disease himself. So I read an interview with him and learned that he worked as a chaplain in a children’s hospital and met lots of sick kids. In that interview he said, “When I was at the hospital, I met all of these young people who, yes, they were sick, but they were also many other things. They were funny and angry and sad, and they had all of the emotions that any other human has, all the desire, all the wishes. And that was what really resonated with me.”
That resonates with me, too, because it’s true. People who have had or currently do have cancer certainly have the same emotions, desires, and wishes as any other human. However, those emotions are often sent into overdrive, as we must confront things we aren’t prepared for or would rather not face.
Those desires are often perilous because of the uncertainty of our fate. As Gus so eloquently expresses it, “Almost everyone is obsessed with leaving a mark upon the world. Bequeathing a legacy. Outlasting death. We all want to be remembered. That’s what bothers me most, is being another unremembered casualty in the ancient and inglorious war against disease.”
Those wishes play a big part in the book, as the characters are forced to learn a hard truth at a very early age: That life is not fair. Or, as Gus puts it, “The world is not a wish-granting factory.” In the interview I read, Green spoke to the idea of the world not being a wish-granting factory:
“I think cancer in many ways to those of us alive today is similar to what tuberculosis was like in the 19th century. It’s so unfair: It takes the young, it takes the old. Sometimes you live, sometimes you die. And it’s very difficult to make sense of the reasons why it may go one way or another. It’s very, very difficult to imagine it as anything other than just cruel and cold and capricious. And that makes it difficult to imagine the universe as anything other than cold and capricious. And I wanted to be honest about that, because I wanted them to have to face, in the most desperate way, that overwhelming question, as T.S. Eliot called it, of how we’re going to organize our lives and what they’re going to mean.”
Hazel and Gus confront the capriciousness of whichGreen speaks. Gus talks about receiving an 85 percent chance of surviving his cancer: “I know those are great odds, but I kept thinking it was a game of Russian roulette. I was going to have to go through hell for six months or a year and then at the end, it still might not work.” Hazel points out that being her situation was completely different: as a Stage IV cancer patient, her “final chapter was written upon diagnosis. Gus, like most cancer survivors, lived with uncertainty.” I had never before considered that a Stage IV patient might view herself as having a more certain future.
Hazel describes a scene that was very familiar to me during the multiple hospitalizations I had from the post-mastectomy infection: “The first thing they do is ask you to rate your pain on a scale of one to ten. I’ve been asked this question hundreds of times over the years and remember once early on when I couldn’t get my breath and it felt like my chest was on fire, flames licking the inside of my ribs fighting for a way to burn out of my body. A nurse asked me about the pain and I couldn’t even speak so I held up nine fingers. Later, after they’d given me something [for the pain], the nurse said, ‘You know how I know you’re a fighter? You called a ten a nine.’ But that wasn’t quite right. I called it a nine because I was saving my ten.”
Saving my ten.
Another quote that really resonated with me is this:
“Pain is like fabric; the thicker it is, the more it’s worth.”
David Walmer was a fertility specialist at Duke University who went on a mission trip to Haiti in the early 1990s. While there, he was shocked to learn of the high rate of cervical cancer among Haitian women. A disease that is highly preventable was killing some 250,000 women a year in developing nations, and Haiti led the world in deaths from cervical cancer. Walmer knew he had to get involved.
Walmer returned to work in North Carolina and learned everything he could about cervical cancer, mainly that it can be detected for a decade before becoming untreatable. Detection is easy because unlike many cancers, it grows in a visible spot: on the outside of the cervix. Routine screening via Pap smears is the norm; before Pap smears became the de facto screening tool, cervical cancer killed more women than any other form of cancer. Since the adoption of Pap smears, the death rate from cervical cancer has dropped by 70 percent. The CDC reports that in 2010 in the United States, 11,818 women were diagnosed with cervical cancer. Of those, less than 4,000 cases were fatal. Compare that to the CDC’s breast cancer stats for the same year: 206,966 women and 2,039 men were diagnosed with breast cancer. Of those, 40,996 women and 439 men died from breast cancer. Therein lies the inherent value of a highly visible cancer
If a Pap smear detects abnormal cells, the next step is to examine the cervix via a special magnifying lens called a colposcope. Walmer realized that outfitting underdeveloped nations with colposcopes could make all the difference in preventing cervical cancer deaths, but that getting colposcopes into the hands of doctors in those nations would be unrealistic because of cost, size, and dependence on electricity. Undeterred, he opted to get creative.
He realized that a common surgical tool — the loupe — could provide magnification without electricity. To provide the contrast needed to detect suspicious cellular activity on the cervix, Walmer bought a Halogen bike headlamp and a green filter for a camera and began to tinker.
A colleague at Duke who taught biomedical engineering got wind of Walmer’s pet project and lent some muscle: namely students in his Engineering World Health club. One of those students, Theo Tam, recruited four other students to work on Walmer’s portable colposcope. These four young men were some of the brightest minds in the sciences and engineering student world, yet they were freaked out by the prospect of working on something so closely tied to the most intimate part of female anatomy. Tam says the other guys were willing to take on a multitude of projects designed to improve medical conditions in third-world countries, but not the portable colposcope. “Anything but the V-word,” Tam says. “Imagine the horror.”
Tam also got creative, and convinced the guys to get involved with the parts of Walmer’s project not related to “the V-word”: marketing, finance, and other “safe” parts. Once they got past the horrifying idea of the female body part, the guys got to work. They assembled a prototype colposcope using lenses from a $2 pair of reading glasses, magnification from a $10 pair of binoculars, and lights from a $16 battery-powered LED. The first portable colposcope, named the CerviScope, was born. After a few more tweaks, it was ready to go. With help from a grant from an investment bank, the CerviScope was ready for mass production.
Walmer created a nonprofit, called Family Health Ministries, from his North Carolina home, to get the CerviScope into healthcare facilities in impoverished countries. FHM’s goal is to screen for and prevent cervical cancer. An integral part of achieving that goal is advocating for the HPV vaccine. The American Cancer Society also advocates for the HPV vaccine; read more about it here. The CDC provides compelling evidence for the HPV vaccine: A 2013 study shows that in the 8 years since the vaccine’s introduction, the virus has decreased 56 percent among girls ages 14 to 19. CDC Director Tom Frieden estimates that two-thirds of American girls aged 13 to 17 have not been vaccinated, and that the 2013 study proves that “the HPV vaccine works well, and the report should be a wake-up call to our nation to protect the next generation by increasing HPV vaccination rates.” Frieden warns that the low vaccination rates in the United States will equate to 50,000 new cases of cervical cases; cases that would be prevented with the vaccine.
There are many take-away messages from David Walmer’s story. That easily-visible cancers are much preferred to those that burrow deep into the body’s nooks & crannies. That even the most brilliant scientific male minds are rendered powerless by the female honey pot. That one finds one’s calling in the most unlikely places. And that tinkering definitely pays off. In a very big way.
A guy came to my front door yesterday to sell me pest control services. We’ve been in the new house right at one month and already have fire-ant mounds the size of, well, Texas, in the front yard. The last thing I want to do is unearth a bag of fire-ant killer and bomb those guys, so when a clean-cut, earnest, smiling young man offered his service, I gladly agreed.
As he was surveying my yard and pointing out the myriad ways in which those little bastards have already infiltrated my new kingdom, we chatted in the way one does with service providers: breezily and superficially. He inquired about our pets and got an earful when I told him about Piper Pig. He asked about my children’s ages and genders. He asked what line of work my husband is in, and then asked if the price of gas is going to continue to climb. I replied breezily and superficially, and as our conversation was running out of steam, he asked if I too am in the oil & gas industry. I paused before answering, knowing that what was to follow is a topic I have come to dread: the question of what I do for a living.
I mumbled something lame about how I “hang out here, taking care of the kids,” knowing full good and well just how lame that sounds. He recovered nicely, telling me that based on my outfit, he assumed I was a career girl who had just returned home from work. I laughed to myself at his good fortune in catching me in a skirt and t-shirt and sandals instead of the usual workout attire and tennis shoes. Most days I go to the gym, shower, then change into another workout outfit because that’s where I feel most comfortable. I have more workout clothes than “real” clothes, and the “active” section is the first section I head toward anytime I go into a clothing store. I boxed up many pairs of “regular” shoes to make room for my growing collection of athletic shoes. I refrained from telling the young pest-control salesman that the only reason he hadn’t caught me in workout clothes is that I had an appointment (more on that later) with a new health-care practitioner and I didn’t show up sweaty and smelly in my gym clothes.
In other words, I dress up — if a skirt, t-shirt, and sandals can be considered dressed up — for my first appointment with a newbie to my ever-expanding stable of health-care experts, but will quickly revert to my chosen uniform of Dry-Fit, spandex comfort.
Back to the dreaded “So, what do you do?” conundrum. Why do I always struggle with this one? Why do I feel feeble about my “job?” Why do I find it supercilious to say that I don’t work outside the home? Why do I cringe when people ask if I plan to go back to work someday. To say that I’m a housewife is ridiculous; I’m not married to my house. To say I’m a homemaker seems archaic, and truth be told, I didn’t make my home; the builder did. To say that I stay home with my kids seems deceitful as they are away at school for most of the day, and honestly, I don’t stay home all that much myself. To say that I am an at-home mom doesn’t ring true either, for reasons we just covered.
I have an old, wrinkled, faded copy of Newsweek magazine that apparently I lifted from Visible Changes hair salon many years ago. It’s dated February 21, 2005. I’ve kept it among my books all these years and found it the other day while organizing the study in our new house. How interesting that I found it just the other day, and ran up against the at-home mom conundrum a few days later. At the time I stole the magazine from the hair salon, my kids were aged 5 and 3 and my mom was dying from cancer–a stressful time, for sure. I don’t recall but suspect that the magazine spoke to me because I was coming to grips with the fact that perfection and motherhood don’t quite go together, even though my mom seemed perfect and set a very high bar.
In the article, author Judith Warner previewed her book Perfect Madness:Motherhood in the Age of Anxiety and got down & dirty about the real truth of motherhood. She asks “Why do so many otherwise competent and self-aware women lose themselves when they become mothers? Why has this generation of mothers, arguably the most liberated and privileged group of women America has ever seen, driven themselves crazy in the quest for perfect mommy-dom?”
Warner described women who “surrendered their better selves–and their sanity–to motherhood. Women who pulled all-nighters hand-painting paper plates for a class party.” She interviewed 150 women from across the country for her book, and heard women universally tell tales of “lives spent shuttling back and forth to more and more absurd-seeming, high-pressured, time-demanding, utterly exhausting kids’ activities.” She found that 70 percent of moms say that motherhood is “incredibly stressful” and that 30 percent of young mothers suffer from depression. More than 900 Texas women told researchers that taking care of their kids is “about as much fun as cleaning the house, slightly less pleasurable than cooking, and a whole lot less enjoyable than watching TV.” Yet mothers feel the need to “perform magical acts of perfect Mommy ministrations so their kids don’t fall through the cracks and end up as losers in our hard-driving winner-tale-all-society.”
Writer Anna Quindlen bookended Warner’s article in Newsweek with one of her own, also about manic motherhood. Quindlen writes, “What the child-care guru D.W. Winnicott once called ‘the ordinary devoted mother’ is no longer good enough. Instead there is an uber-mom who bounces from soccer field to school fair to play date until she falls into bed at the end of the day, exhausted, her life somewhere between the Stations of the Cross and a decathlon.”
Sheesh. No wonder I feel weird about telling someone else that my “job” is being a mother.
I’ve long ago given up my position on the PTA board and planning classroom parties and organizing a birthday party for the teacher. I did my time chaperoning field trips and opening milk cartons and ketchup packets at lunchtime. I worked more than one shift reading aloud to my kids’ kindergarten classes, and I committed to mentoring struggling kids in other classes. I enjoyed it, but I don’t miss it. While I don’t remember feeling pressure — from myself or others — to be a perfect mom, I welcomed the opportunity to step away from such duties. The fact that it was a cancer diagnosis when my kids were in 5th and 2nd grades wasn’t the opportunity I was looking for, but it is what it is. Who knew that I would be trading one high-pressure, insanity-creating, incredibly stressful job for another. Being a mom and being a cancer patient have a lot of similarities, most notably that no matter how far we’ve come, there’s still a long way to go.