Suck it up, buttercup
Posted: June 30, 2014 Filed under: cancer fatigue | Tags: American College of Obstetricians and Gynecologists, American College of Physicians, cervical cancer, heparin lock, ovarian cancer, Pap smears, pelvic exams, port flush, port-a-cath, Power Port, tumor fever 6 CommentsThis post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.
Proceed at your own risk.
The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”
The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they do in fact detect cervical cancer. It’s the “no known cancer risk” part that really galls me. How do we know what our risks are if we can skip out on unpleasant tests?
Despite the ACP’s “feel-good” stance, the American College of Obstetricians and Gynecologists continues to recommend pelvic exams and says that eliminating the exam would mean “providing women with less comprehensive care.” In addition, the ACOG recognizes that many women don’t mention symptoms in their nether-regions until a doctor finds an abnormality, and that many women receive peace of mind from knowing that everything is normal below the belt.
Gynecologists agree that pelvic exams are not good tools for screening for ovarian cancer, which is notoriously difficult to diagnose. But, they say, experienced physicians can use pelvic exams to find other problems, such as noncancerous fibroids, and to identify changes linked to urinary incontinence and sexual dysfunction. And equally importantly, to establish a baseline of normality so that a change is easier to detect.
Dr Barbara Levy, vice president for health policy for ACOG says, “Not everything we do in life can be studied in a randomized trial powered to find a scientifically valid answer one way or another. I’m not sure there’s evidence to support most of what we do on physical exams. Lack of evidence does not mean lack of value.”
Anyone who has ever undergone a pelvic exam knows it’s not pleasant. No doubt. But guess what’s also unpleasant? And dreadful? Reproductive cancers. And if doctor’s groups are recommending women be spared from unpleasant exams today, who’s to say that similar recommendations against other unpleasant screenings won’t follow? Residents of cancerland, raise your hand if you find routine visits to your oncologist unpleasant. Raise your hand if those visits and the requisite exams produce anxiety. Now let’s have a show of hands for those who find the frequent port flushes to be unpleasant and painful. But we do them anyway, don’t we? We suck it up and get it done, despite the anxiety and the fear and the pain.
My sweet mama was one of those who didn’t like to go to the doctor and who put off going as long as humanly possible. She was tougher than a $2 steak, but she didn’t like to go to the doctor and would find any excuse to skip it. In fact, when she was being eaten alive by ovarian cancer and had a belly so distended she looked 6-months’ pregnant, and when she had raging “tumor fever” from the unwavering progression of her disease, she still didn’t want to go to the doctor.
She would have loved to hear recommendations like that of the ACP, saying “Don’t worry about it. Don’t put yourself through any unnecessary discomfort — physical or emotional.” And I would love for her disease to have been caught sooner, and to have her still here, still with me. Instead, I have a hole in my life and a missing piece in my heart. I have no patience for recommendations and doctors who say it’s ok to skip out on tests/screenings/visits/checkups because they’re no fun.
IMHO, the ACP’s latest recommendation is akin to the “everyone’s a winner” mentality that pervades our society. Here we stand, handing out trophies to both winners and losers and telling women that it’s ok to skip an unpleasant exam. We’re inundated with messages that we “deserve” more — whether it be a house we can’t afford or a luxury item we don’t need — and we forget that life is sometimes unpleasant. Certain aspects of life can be painful. It’s not all smooth-sailing. In a whacked-out effort to avoid hurting anyone’s feelings, we lean too far the other direction. Instead of building ourselves up, these misguided efforts have the opposite effect: eroding self-esteem, self-worth, and self-confidence by failing to learn how to weather storms. 
Maleficent blurs the lines
Posted: June 24, 2014 Filed under: Uncategorized | Tags: Angelina Jolie, Disney movies, good vs evil, Hannibal Lecter, Maleficent, red lipstick, The Silence of the Lambs 2 CommentsHere’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.
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Yowza. That bone structure is sharp. And somewhat distracting.
And those lips.
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That lipstick.
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Those wings.
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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.
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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.
tentacles
Posted: June 10, 2014 Filed under: cancer fatigue, literature | Tags: cancer patients in movies, cancer recurrence, cancersploitation, chemobabe.com, Hollywood portrayal of cancer, John Green, Lani Horn, Nettie Horn, psychological effects of cancer, stress of cancer recurrence, Susan Gubar, tentacles, The Fault in Our Stars 4 CommentsI read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.
Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:
“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”
Cancer does not respond predictably to treatment.
True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.
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Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life, to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”
This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.
Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”
Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”
She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”
Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.
Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”
Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.
Getting the run-around
Posted: June 5, 2014 Filed under: Uncategorized | Tags: ATLAS study of tamoxifen, Benjamin Button, Bruce Banner, health insurance battles, Hulk smash, Oncotype DX, patient advocate, quitting tamoxifen, side effects of tamoxifen, tamoxifen 8 CommentsAs anyone who has faced long-term illness or disease will tell you, wading through the medical bills can be a full-time job.
Luckily, I don’t have nearly as many bills to wade through these days. However, in Cancerland, the next expensive test and big bill can be — and usually is — right around the corner. The latest for me was a vaginal ultrasound in March to determine if my ovaries are up to no good after coming off tamoxifen. Yes, that’s right, a vaginal ultrasound. Don’t be jealous. It’s yet another perk for those of us in Cancerland.
I struggled long and hard with tamoxifen. I’ve written about my complicated relationship with the drug many times; most recently about the T-rage I had been experiencing. Like poor Bruce Banner, I was one Hulk smash away from wrecking something for good, and I didn’t like that. I also had serious bone pain that got worse instead of better. I felt as if I were aging at a scary-fast pace. While the bone pain and aging were unpleasant, they weren’t deal-breakers. The T-rage, however, was a deal-breaker.
The T-rage was bad, really bad, but even worse is the increased risk of uterine cancer. For someone with a complicated family history of reproductive cancers, uterine cancer isn’t something I’m willing to risk. I’m not looking for a three-peat here; melanoma in 2006 and breast cancer in 2010 are more than enough for me. Throw in tamoxifen’s potential to cause liver as well and I’m downright spooked (with my affinity for champagne, my liver is likely limping along as it is. No need to tax it any more than my bubbly habit already does.)
I broke up with tamoxifen last fall. After three years, the side-effects were piling up like cars on Houston’s Southwest Freeway during rush hour. As much as I would have loved to have made it to the 5-year mark with Tamoxifen, it was unlikely; even more unlikely was being on the drug for 10 years, as is the current recommendation for pre-menopausal women.
Whether to continue taking the drug was a very difficult decision, and one with which I struggled. In the end, it came down to quality of life. Cancer and its far-reaching tentacles had already taken so much from me; I wasn’t willing to give up the slight hold I had on my sanity. It is a very personal decision. Much like the decisions that go along with surgery options and adjuvant treatments, what’s right for me might not be what’s best for the next person in Cancerland.
I’m far from alone in my decision to stop taking tamoxifen, however. This study of nearly 9,000 women with early-stage breast cancer revealed that only 49 percent made it all the way through five years. Younger women were more likely to quit their treatment, perhaps because of the far-reaching side-effects that come along with the drug.
As nasty as tamoxifen can be, just stopping it doesn’t mean the trouble ends. Because the estrogen my ovaries produce is no longer blocked by tamoxifen, the potential for that estrogen to feed hungry cancer cells is once again a very real possibility. The next-best option is having my ovaries removed, hence, the ultrasound in March that kicked off the latest round of harassment by my insurance company.
Yes, I am grateful to have health insurance and I am very sympathetic toward cancer patients who do not. The one thing that can make cancer more crap-tastic is to have to worry about going broke because of it. Being stressed about money is no fun. Add in all the hype about stress contributing to cancer, and the crap-tastic scenario becomes even crappier.
As was the phone call I received last week from the hospital where I had the vaginal ultrasound to determine what, if anything, was going on in my possibly ill-behaving netherregion. Here’s how it went down:
Her: “Hello, this is YaddaYadda So-and-So with the hospital you had your ultrasound at on March 20, 2014. I’m calling to collect the $508.40 you owe for that ultrasound.”
Me: (silently, to myself: Do not correct her horrible grammar. Let.It. Go. “at on” is not the worst thing a person can say. Even a person trying to collect money.) “Oh, hi YaddaYadda So-and-So.”
Her: “How are you today?”
Me: “Feeling like I’m about to become $508 poorer.”
Her: (silence)
Me: “hello?”
Her: “Yes, I am calling to collect $508.40.”
Me: “I have no idea to what you are referring. I have not received a bill for my portion of the ultrasound.”
Her: “So you did have an ultrasound on March 20, 2014?”
Me: “Apparently so, otherwise I cannot fathom why we would be having this conversation.”
Her: (more silence)
Her: “When can we expect payment for this unpaid service?”
Me: “When can I expect to see a bill for this service?”
Her: “It will be mailed out this weekend.”
Me: “So, you’re calling me to ask me to pay a bill that I have yet to receive?”
Her: “Yes ma’am. What kind of payment can you give me today?”
Me: “How about we wait on that? Maybe until I actually receive a bill?”
Her: “Ok, but when can we expect to receive your payment?”
Me: “Ummm, how about after I receive a bill?”
Her: “When do you think that will be?”
Me: “Am I being punked? Is this conversation for real?”
Her: (silence)
Me: “Here’s how it’s going to work: once I get a bill I will review the bill. Then I will check with my insurance company. Then I will pay whatever I owe. However, nothing is going to happen until I get a bill.”
Her: “Ok. Thank you for choosing our hospital. Is there anything else I can help you with?”
Me: “I’m not sure you’ve helped me with anything yet, so “anything else” is not likely. But thanks for asking”
Her: “Good-bye.”
The very next day, I get another call from another person in the billing department at my hospital. She, too, wanted to know when they can expect the $508.40 I owe. I told her, quite gently, that I have yet to receive a bill and that I had a conversation to the same effect yesterday, with her colleague. She seemed as dismayed as her colleague that I wasn’t ready to fork over $508.40 for a service for which I’d yet to see a bill.
Two days later, still no bill, but yet another phone call from yet another person in the billing department. I told her that she was the third person to call about a bill I had yet to see. I asked her to please put a note in my file that says Do Not Call Me Until the Bill Has Been Mailed. And Then Wait a Couple More Days to Give Me Time to Go to the Mailbox and to Read Over the Bill.
At this point, my patience had worn rather thin.
After doing some investigating with my insurance company, I learned that the claim had yet to be filed. I duly called the billing office of the hospital to report my finding. I left a voice message stating my business; I suppose all the billing representatives were busy on other lines, cold-calling customers asking for payments for bills not yet process, mailed, or received. I felt comfortable ignoring the two voice mails the billing department left me while I waited for the bill to arrive.
Today I got a call from yet another billing representative, telling me that they got my voice mail and were calling me back to take my payment. Here’s how that convo went:
Her: “Yes, I’m wondering how you’d like to pay the $508.40 owed on your account.”
Me: “You mean the $508.40 about which I left a voice mail, saying I checked with my insurance company and no claim for that service on that day by this hospital has been submitted?”
Her: “Yes ma’am. How would you like to pay?”
Me: (silence)
Her: “May I place you on hold, to verify that the claim has been processed?”
Me: “You call me, then want to put me on hold? So you can check to see if there’s a reason for you to have called me?”
Her: “Uh, yes. Ma’am.”
Me: (sigh) “Ok.”
Her: “Ma’am, we show that your insurance company just submitted payment for $1249.10 today. They just paid today.”
Me: “Ok. Great. So we’re done here?”
Her: “Um, I think so, but let me double check. May I place you on hold?”
Me: (sigh) “Ok.”
Her: “Yes ma’am, your insurance company paid the $1249.10. Today. They paid today. Just now. I don’t see that you owe any deductible. But, um. How would you like to pay your portion?”
Me: “My portion of what? You just said I don’t owe any deductible.”
Her: “Um, that’s right. I don’t think you owe anything at all”
Me: “So we’re done here?”
Her: ” Yes. Is there anything else I can help you with today?”
Me: (sigh)
Here’s what I want to know: does the hospital make such phone calls soliciting payment on purpose, hoping the recipient of the call will just pay whatever amount they’re told, right there over the phone? Or is the billing process complicated enough to warrant the kind of confusion that results in a customer receiving multiple phone calls asking for payment for a bill that’s yet to be received?
Or was I being punked?
Saving my ten
Posted: June 2, 2014 Filed under: Uncategorized | Tags: Brutus, John Green, Julius Caesar, saving my ten, The Fault in Our Stars 10 CommentsYesterday 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.”
While that is true, it’s also true that the more it’s worth, the more it costs. That’s why I’m saving my ten. 
The Pink Underbelly 