Suck it up, buttercupPosted: 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 Comments
This 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.
Back among the livingPosted: October 28, 2011 Filed under: Uncategorized | Tags: breast cancer, new boobs, plastic surgery, port-a-cath, postaday2011, Power Port, reconstruction, recovery, revision 9 Comments
I’m happy to report that today is a much better day than yesterday’s barf-o-rama. I lost count after the puking reached double digits, and admit to a moment of panic when I realized I hadn’t kept anything down all day. Not even a pretzel. I did learn that there is quite a hierarchy in grossness of what comes back up — some food items are way more disgusting than others when vomited up. And that’s all I’m going to say about that. By 9 pm I decided to throw in the towel and just go to bed. I won’t say I slept especially well, but I didn’t throw up any more so I’m calling it a victory.
The surgery was successful. Very successful. My doc achieved something I honestly didn’t think was possible — he sculpted, tucked, cut, and stitched to create exactly the look I was hoping for, but didn’t think would happen. The shape and symmetry are both very much improved, and instead of an elliptical uniboob, I now have two distinct and rounded boobs. My port is gone, and the ever-thoughtful doc even injected a little bit of fat into the port-removal site because sometimes after the device is removed, the skin collapses a bit to create a divot. But not for me, thanks to my forward-thinking surgeon. How nice is that?
I’m pretty battered and sore, and the port-removal site hurts worse than I expected, but I’m happy. I even told my doc this morning that as much as it pains me to admit it, he was right all along. He was right, I was wrong: he was indeed able to fix my messed-up chest, and his artistry certainly prevailed. I never expected the DIEP surgery to result in one-and-done results; I knew that revisions, plural, would be necessary. But I had fallen into the abyss of wondering if things would ever look right again. I can’t tell you how happy I am to report that I’m no longer in that abyss, and all is right in my world.
I’ve got to lay low and be very still for a while, as everything that was sucked out and relocated settles in. Thanks to everyone who checked on me, and thanks for all the prayers and good wishes sent from near and far.
JourneyPosted: April 20, 2011 Filed under: breast cancer, drugs, menopause | Tags: Boston, cancer battle, cancer is not a gift, cancer milestones, champagne, China, Cost Plus World Market, cross-body bag, DIEP, gauze dressing, Gulf Coast, infection, Journey, Lao Tzu, lost tooth, Napa, pity party, port-a-cath, post-mastectomy, reconstruction, recovery, Sarah Palin irritates, summer in Houston, survivor, Taoism, the Big Dig, Vancomycin, Vera Bradely 6 Comments
If you’re like me, once you read the title of this post, you’d end up with “Don’t Stop Believing” running through your head.
“Hold on to that feeeeeeeeling….”
Yes, we are simple creatures at times, and prone to even simpler suggestion.
As I wrap up the Napa series of blog posts, I reflect back on a fantastic trip, an outstanding weekend, and the kind of memories that would keep me warm on a cold winter’s night if I didn’t live along the Gulf Coast of the great state of Texas. Not that the memories aren’t that good, but that there’s little need for warming around here. Especially with my hot flashes. Thanks, early-induced menopause, because pre-summer in Houston isn’t steamy enough.
Thinking about the trip and preparing to say good-bye to our visitors from Boston today makes me a teensy bit sad. I don’t like transitions. I’m in for the long haul and can work long and hard at a steady pace, but I don’t care for the ups & downs, the twists & turns, the stops & starts. This sentiment applies, for me, whether we’re talking about vacation or illness. Going from my “normal” life to vacation mode takes me a little bit of time. Getting into the vacation frame of mind is a conscious shift for me, even when it’s a vacation I’m looking forward to. Having our friends from Boston here is most definitely something I look forward to, but it still requires me to make that shift in my head.
Now that our vacation with them is ending, I find myself again shifting, from the luxuryof sleeping in on a school day and spending the day by the pool, drinking early and often and into the evening; to hauling my carcass out of bed to pack the kids’ lunches, sign their folders, forge notes about their absences, and getting back to my normal life. I like my normal life, so this isn’t inherently a bad thing; it just required me to shift gears and change my mind frame.
I’ve never been good at handling change, and that may be why I’m not a great traveler. I don’t like the idea of having to decide in advance what I’ll be wearing, and then pack it, taking care to not forget anything. It seems that once I get used to the new location, it’s about time to go home, and then there’s another adjustment to handle. I do it, and without the need for intervention, but it’s an effort.
That’s why this phrase spoke to me:
It was on the wall of the Cost Plus World Market in San Francisco near our hotel, where we popped into for supplies (and by supplies, yes, I do indeed mean champagne) our first night in California. We were at the checkout, clanking bottles and deciding whether to add chocolates to the purchase, when I saw this saying on the store wall. The other shoppers might have thought me a bit mad to be snapping a photo in the middle of a store, but I stopped caring about things like that a long time ago.
The saying spoke to me because I know that Lao Tzu is right. He was a mythical figure in ancient China and is said to be the father of Taoism, so you know he’s smart. His ancient quote about the good traveler retains relevance today because people like me continue to buck the journey in favor of the destination. I know that it’s not about the destination, yet I can’t wait to get there. I will jump through all the requisite hoops along the journey in order to get to the destination, but for me, the destination is the goal. Wrong, I know, but still I persist.
Some say that dealing with cancer gives you greater clarity on “the things that really matter.” Or that having survived cancer, you become more aware of and grateful for the things around you. Then there are the idiot-balls who say that cancer is a gift. To them, I say choke off. This is no gift. Yes, it does afford the opportunity to re-evaluate priorities and habits, but it’s no gift.
I spend a lot of time in my personal “cancer journey” marking off time and accumulating milestones. Maybe that’s a coping mechanism, I don’t know. I do know that I can tell you to the day how long I’ve been on oral antibiotics (251 days), and how long it’s been since The Big Dig (49 days). More likely, it’s because I’m focused on the destination and not the journey. I can’t wait to “be done” with this cancer business: the disease itself, the surgeries, the recoveries, the uncertainty, and the drug therapies. I don’t aspire to ever be free of the worry that the cancer business drops on my doorstep like an unexpected and oversized parcel. It will always be there, in the back of my mind. I liken it to the childhood sensation of rolling your tongue through the newly-created hole of a lost tooth. Your brain knows the tooth is gone, but your tongue can’t resist checking for sure, by sliding through that narrow, slippery, and slightly nauseating space. My brain knows my cancer is gone, yet it can’t resist double-checking.
I refuse to live in fear, however. I don’t want to have any regrets: about life in general, and certainly not in this “cancer journey.” Each decision I’ve made along this “journey” has been nitpicked and examined half to death, with risk and reward calculated to within an inch of their lives. Some decisions have been difficult, and some have been easy, but none have come without a lot of thought.
I heard from a fellow breast cancer blogger who is dealing with an infection, possibly of her tissue expander, just as I did. She’s on IV Vancomycin, like I have been many times. I commented on her blog to tell her that the Vanc works and it will cure her, hoping to offer some support. She replied that she can’t imagine how I endured that process multiple times because it’s so stressful. Yes, it is. No doubt there. And if someone were to ask me how I endured it, I don’t know that I would have an answer. I don’t know how I got through it, other than I just did it. Just gritted my teeth, tucked my head and did it. Because I didn’t see any other choice. Saying “I can’t” wasn’t going to make it go away.
I do like to make myself focus on good things, or to “walk on the sunny side of the street” (thanks, Mom!). Yesterday I wasn’t feeling well, for the 3rd day in a row, and was a little put-out that my “cancer journey” was once again interfering in my fun. I wanted to visit and eat & drink with my friends who were in town, but instead I had to lay down and take a nap. Take a nap. In the middle of the day, and in the middle of my friends’ visit. That made me grumpy, and I was just starting to think about getting out the pity-party supplies.
Then I told myself to shut the hell up, get in the shower and get on with the day. There was dinner to prepare for our last night together and 3 bottles of bubbly in the fridge, so there was no time for a pity party.
While in the shower, I was wondering why the hell my belly incision is still so tight and sore after 48 days, and when in the sam hell it’s ever going to heal all the way so I can take a shower like a normal person, without wincing as I lather, rinse & repeat, and just be done with it.
Then I realized: I AM taking a shower like a normal person. There were no JP drains to deal with. There were no holes in the side of my body to keep dry. There was no dressing over the accessed port-a-cath that had to be kept dry.
When my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be covered to keep it sterile. The port itself is smaller than a quarter, and the butterfly needle (while really thick) doesn’t extend the area. Yet the whole thing has to be covered with this giant dressing. That’s it above, stuck to my clavicle, shoulder, and neck area. My skin hates these dressing with a passion. The sticky tape irritates my skin as much as Sarah Palin irritates me. After I peel the dressing off, there remains a red, raised outline in the exact size & shape of the dressing.
And yet, I’m sans dressing. That’s a bright side, a good thing to be tallied and counted. I’m also sans sling bag. Not having the JP drains means I don’t have to wear the sling bag, cute as it may be, 24/7. That’s another bright side, and a very good thing.
Yep, it’s cute, and it served a wonderful purpose, and I love my runnin’ buddy for getting it for me. Being able to camouflage the drains by stuffing them in the sling bag, then hide the protruding rubber tubing by the cross-body bag, gave me freedom and kept me from being house-bound.
There’s nothing in there — look, Ma, no drains!! — and that is a reason to celebrate. I’m no longer tethered to plastic bomb-shaped udders collecting all manner of gross stuff, fluid and solid, that my battered body is shedding after yet another major trauma. I don’t have to plan my very limited wardrobe around the bright orange pattern anymore, but now I can do that just because I want to.
I will always be grateful to the sling bag for carrying my drains, and my drugs, in such style. The clear plastic compartment in the inside front is not likely designed for slipping in the essential few pills, but it sure worked well for me. I’ve heard that some people keep their driver’s license there instead. How weird is that?! Instead of my TX ID, featured here are my constant companions Bactrim & Minocycline, the antibiotics for the post-mastectomy infection; a muscle relaxer for the super-tight 17-inch belly incision; and a Xanax for any and all calamities, just in case.
So while this “cancer journey” is far from a gift and certainly does suck, I can still “walk on the sunny side of the street,” look on the bright side, and find moments of goodness contained within as I move forward, always searching for the finish line.
This signpost, sent to me by Jill in the Oakland airport en route from Napa back home, is a good mile marker in my journey. I love that my friends see bubbly-related things and think of me, and I love that no matter where this journey takes me, I’ll have great friends, a sassy sling bag, and plenty of bubbly for the ride.