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.
Portrait of a survivor
Posted: November 23, 2010 Filed under: breast cancer | Tags: bloodwork, breast cancer, cancer diagnosis, champagne, coffee, CT scan, infection, IV, lymphedema, mastectomy, pink ribbons, port flush, Race for the Cure, reconstruction, recovery, recurrence, survivor, tennis 4 CommentsWhen you think of a breast cancer survivor, what comes to mind? A granny all decked out in pink? A joyful gal in a ball cap crossing the finish line at the Race for the Cure? How about a sad sack sitting in yet another hospital waiting for yet another test? You might think that surviving the diagnosis, the surgery, the treatment(s) and any subsequent complications means you’re done, right? Wrong. You’re wrong. It doesn’t end there, and there’s no prize for getting through it.
Welcome to the next phase of survivorship: the constant vigilance required to ensure the cancer isn’t making a repeat appearance. Although I’m just getting started, I’ll quit my bitching just long enough to say I am grateful that my doctors are vigilant, that I have good insurance, and that I can get the majority of my tests done 10 minutes from home. That said, it’s still a giant suck-fest.
Today’s test is a CT scan to check 2 little spots–1 on my liver & another on one of my lungs. These little gems were uncovered during a CT scan the last time I was hospitalized, in mid-August. No one seems too worried about them because they are so small, but once you’ve had cancer, you learn the hard way that there is no sure thing. There is no guarantee. A spot is a spot, no matter how small, and a spot is never a good thing once you’ve had The Big “C.”
Hence today’s CT scan. I’ve never had an abdominal scan before, so I didn’t know that in addition to the fasting and IV contrast (where they inject dye into my veins), I also get to drink the dye. So instead of my daily cup of coffee (which, by the way is the #1 reason I get out of bed each morning), I had to gulp down two big cups of Sprite mixed with contrast dye. No ice. No vodka. That’s just mean. I don’t like Sprite on a good day, and by good day I mean one in which the Sprite is mixed with vodka. Lots and lots of vodka. The only good thing about drinking these 2 vile cups is that I could have burped loud enough to seriously impress a room full of middle-school boys. Too bad the waiting room was full of old people, who either wouldn’t hear it or would think it was rude to launch into a Buddy-the-Elf style burp.
After the Sprite-fest was the IV contrast. Ugh. I really don’t like needles, but have had enough of them in the last 6 months, whether IVs or blood draws or shots or port flushes, to kinda get used to them, but I still don’t like them. My veins on the left side have been used so much that they rebel. They act nice at first, so right after the big stick, to pierce the skin and enter the vein, it seems as if it’s going to work, but just as the nurse is threading the needle higher into the vein, that vein says, nope, no farther. The nurse typically digs around a while before giving up and moving to the other arm.
Cue the complication: because my infection was on the right side, and because I’m working hard to avoid lymphedema (swelling from surgery or trauma that can be permanent and that is seriously contraindicated with tennis), I’m supposed to avoid getting my blood pressure taken or blood drawn from my right side. But that’s my good side! That vein hasn’t been used & abused so much that it pouts and throws a tantrum like a toddler who’s way past nap time.
Sigh.
Luckily, the nurse was very nice. She listened to my long, drawn-out story about my bad luck on the right side and bad veins on the left, and rolled up her sleeves to try and make it work. Work, it did, with just a little big of digging on her part. After the IV it was time to lay down on the CT machine. No big whoop. No trick there, just suck it up because it’s hard plastic instead of Tempurpedic. And then the fun part: injecting the contrast. If you’ve never experienced this, let me be the first to tell you that if you have to go through this, remember: as the dye enters your vein and travels throughout your body, you will feel a warm, wet sensation. Don’t panic and think you’ve wet your pants. Don’t worry too much about it because before you know it, the “did I wet my pants?” sensation is replaced by a crushing headache and the feeling of wanting to simultaneously vomit and pass out. It’s also ok to want to cry for yo mama. The good thing (!) about all this is, it doesn’t last very long. So before you know it, the “wet pants, gonna puke, but wait I might pass out” feeling is over, the scan is done, the nurse yanks the needle out from your vein, and you are free to go. Come back in three months, though, to do it all over again.
So the survivor vigilance is a lot of work. It’s hard enough to live with a monkey on one’s back, wondering if/when the cancer is going to recur. It’s hard enough to wonder, am I doing enough? Asking the right questions? Worrying about the right issues? Researching the right stuff? It’s hard enough to put complete trust, and thereby one’s life, in the doctors’ hands. They are human, ya know. As schooled and trained and rich in experience and purpose as they are, they’re still human. So as much as I do trust them, there’s always that little voice in the back of my head wondering, what if they’re wrong? What if they made a mistake?
Nobody said it would be easy, but I really didn’t think it would be this hard. That’s why I have this cute little pillow on my bed, to remind me that yes it’s hard, but dadgummit, I am indeed a survivor. Period.