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.
Fresh hellPosted: November 2, 2011 Filed under: breast cancer | Tags: Bactrim, Dorothy Parker, minocycline, postaday2011, Power Port, what fresh hell is this? 9 Comments
Yep, that’s where I am — in antibiotic hell.
Just 4 days into my 10-day course of prevantative, post-surgery oral antibiotics, and what a fresh hell it is.
I’ll keep this short and sweet because my brain is sludge and because no one needs to hear the laundry list of complaints. How I took these drugs for 267 days I do not know. Four days alone and I’m ready to cry for mercy. Kudos to all you lovely friends who have reminded me that I can do this. Or that I can “so do 6 days,” as my bud Nicole texted me yesterday. I needed to hear that.
The other, non-abx side of my recovery is going quite well. Some might even say swimmingly. If not for the dreaded abx, I’d be cruising.
Instead, I’m … not. Would love to think of some witty antonym to cruising, but with the sludgy brain, it’s not gonna happen. So I’m doing whatever the opposite of cruising is. Barely gettin’ by. The teensy bit of energy I do have is spent on basics (brushing teeth, changing clothes) and keeping my kids just north of the subsistence line.
I know, I know: it’s temporary.
One day I will look back at this fresh hell and smile knowingly at the superpowers that propelled me through this mess.
I saw my all-time favorite surgeon yesterday for my second post-op checkup. He was looking fit & tan and especially dapper in his yellow tie. His rosy glow might have been from some weekend sun or from the aftereffects of our previous meeting, in which I ate crow and admitted that he was right, I was wrong about whether my reconstructed chest was ever going to look good again. He was was right, and it does.
He didn’t remove any stitches, so I’m still nice and securely stitched together. The site where he removed my port (hallelujah!) is pretty dadgum sore, but if that’s the worst of it I can take it. I peeked under the steri-strips and found that his stitches are especially tiny, neat, and tidy and I have every reason to believe that the scar will fade away nicely.
The photo is awful, and if that’s what my skin tone looks like in real life, I’m really going to feel sick, but I’m trying to keep this G-rated, and the lighting in my bathroom must be B-A-D. But you get the general idea of the incision on my left shoulder, just beneath the little birthmark that my mom used to say was where the stork kissed me when I was born.
So the healing continues, and the fresh hell of yet another course of Bactrim & Minocycline is proving to be quite the challenge. Six more days….I can so do that.
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.
I’m trying really hard…Posted: August 17, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: cancer battle, post-mastectomy infection, Power Port, psychological effects of cancer, reconstruction fears 20 Comments
I’m trying really hard not to be discouraged by the latest bevy of bad news. Picture me squeezing my eyes shut as tight as they will go, turning a bit red in the face, and willing it to happen. Don’t. Get. Discouraged. Having my surgery postponed and being smacked in the face with the idea of another post-surgery infection is not my idea of fun. Being told we need to keep the port that I’ve been so looking forward to having removed was equally not fun. I’d actually begun counting the days until saying adios to the port. It’s served me well, but I’m so so so ready for it to be gone. I could almost imagine sleeping comfortably on my left side again, with no kink in the line that’s sewn into my jugular vein. I could picture myself in a sundress, sans the alien-looking bump with prongs under my skin. But alas, it’s not to be. Once again, the hits keep coming, and I have to suck it up and deal.
I’m trying really hard. So hard that I just wrote a beautiful post, if I do say so myself, about the effort. The words were flowing and I was thinking, “This is going to be good.” Then promptly lost it. All of it. Instead of “save” I hit “cancel.” And with one keystroke, it’s gone. I will attempt to recreate, but already know it won’t be as good.
I’m trying really hard to remember that while yes, being diagnosed with cancer–at a young-ish age no less–is bad, plenty of women have it worse than me. There are lots of rarer, more-aggressive forms of breast cancer than mine, and the battles are many. While my recurrence odds are low, the mere fact that I have odds reminds me in a terrifyingly real way that there’s always a chance that it will come back. As another fellow cancer chick so eloquently put it: “It’s losing your innocence all at once, rather than in bits and pieces over a lifetime.” Being diagnosed with cancer at a young-ish age is bad enough; fearing recurrence is even worse. Then you factor in all the other junk that comes with it, and before long it’s like inviting one person to a party and having them bring a village of savages with them. They drink all the good booze, hork down the delicate hors d’oeuvres, manipulate the conversation, interrupt with Buddy-the-Elf-esque burps, wipe their dirty mitts on the pretty towels in the guest bathroom, spill red wine on the beige carpet, and change the tinkling background music to heavy-metal hair bands. The cancer crew is most unwelcome. And yet they overstay their welcome in myriad ways.
I’m trying really hard to not freak out as the possibility of infection scares the tar out of me. There’s a kindly gatekeeper in my brain that shields me from the harsh memories of the battle royale that occurred last summer between my war-torn, ravaged body and mycobaterium fortuitum. While of course I remember being there and going through that, it’s as if I’m watching a movie of myself enduring that hell. It’s a gauzy, soft light, much like the lens filmmakers use to shoot a scene with an aging star. The gatekeeper that usually protects me from windexing the lens to see it unfold clearly, in all its replayed gore, is off duty. What I want to do it pack up all those horrible memories of the events last summer and put them in a box and leave them on the side of a deserted highway. Then I want to put the pedal to the metal, burn rubber, and beat feet away from them, without even once glancing in the rearview mirror. I want to find myself on a pastoral country road, with tall, leafy trees and big puffy clouds–somewhere far, far away from any hint of cancer or infection.
I’m trying really hard to be calm and not freak out about the possibility of infection. Of course I know that anytime one goes under the knife, the chance of infection is there. But rather than a distant “maybe,” infection is a real thing for me, and I have a visceral reaction to the idea of going through that again. And while the preventative antibiotics are just that — preventative — I find myself with real fear instead of comfort. The prophylactic effect should make me feel better, but instead I feel worse. There is a very fragile peace that was brokered between my body and the bacterium, and peace without the threat of war is meaningless.
I’m trying really hard to not gag on the antibiotics. I dutifully swallow the two pills that are my front-line defense against the wily bacterium that may want to set up shop again. Those bacterium were evicted after their long, comfy stay in my concave chest wall, and they may well want to reestablish their presence. So I swallow the pills, knowing full well that soon, very soon, I will feel like utter hell. The all-day nausea, the roiling queasiness, the lost tastebuds, and the sore throat that were my constant companions for 267 days are making a return visit. Back by not-at-all-popular demand is the diligence required in spacing the drugs 12 hours apart, and the taking them on a stomach empty enough to allow them to do their thing but not so empty as to make me puke. Instead of feeling comforted by the preventative drugs, I’m scared.
I’m trying really hard to think happy thoughts. Right now I’m remembering a highlight of our recent vacation, in which we were all in the ocean battling giant waves as the tide turned. These were seriously bitchin’ waves, a good 8-feet tall, and we were in the thick of them. I was ecstatic that the water was warm enough for me, a Gulf Coast chicken; that the waves were so accommodating for body surfing and frolicking; and most importantly that I was there to experience it. As I came up from being tumbled ass-over-tea-kettle by a giant wave, Macy overheard me say that that wave just bitch-slapped me. She misheard me, though, and thought I said that the wave had “fish-slapped” me, and she wanted to know if it was a flounder, because they tend to be especially evil. I’m gonna smile at the idea of being fish-slapped, even though I feel like crying instead.
I’m trying really hard to focus on how far I’ve come instead of how many setbacks I’ve had. The race is long, yet I’ve continued to put one foot in front of the other. Keep on keepin’ on. Several people have tried to help along the way by telling me that God only gives us what we can handle, and that he must think I can handle a lot. Thanks, but zip it. I don’t believe it, and I’m not comforted by that. While there are a host of helpers along the way, there’s only one person involved in this battle, and that’s me. No one is doling out the hard knocks in an insane game of “let’s see if this will make her crack.” It’s random, it’s uncontrollable, and it’s life. It’s life, and my job is to keep on truckin.
I’m trying hard to remember that this is temporary. As my wise survivor sister Jenny reminded me countless times during diagnosis, surgery, and treatment, this is temporary. This mess won’t be at the center of my life forever, as difficult as that is to imagine now. The ennui I feel today won’t always prevail. It’s easy to get caught up in the quagmire of unpleasant things that have come my way. I can see just how easy it would be to slip into the loving arms of pills, booze, rage, and self-pity. Name a vice, any vice; I’ll take it. It would be so, so easy to say I’m done, I’m out. Let the vultures pick my carcass clean because I give up.
I’m trying hard to walk on the sunny side of the street, as my sweet mama always advised. There are some dark and ominous alleyways around me, but I will seek out the sun and pound the pavement until all this madness is over. Those who have been on this “journey” before me assure me that one day it will all be a distant memory. I know this is true, yet it seems impossibly far away today. One day I will look back at all this and think, “Man, what a shit-storm that was.”
When you suspect MRSA…Posted: March 27, 2011 Filed under: breast cancer, drugs, infection | Tags: AstraZeneca, breast cancer, butterfly needle, cancer battle, CCSI, cefapim, Cubicin, infection, infectious disease, IV drugs at home, jugular vein, life before cancer diagnosis, MRSA, post-mastectomy, Power Port, shopping, Vancomycin 6 Comments
I was just looking at some info online about Cubicin, my poorly named but hopefully awesome new antibiotic. The heading of the website caught my eye: When you suspect MRSA cSSSI or bactermia—use CUBICIN first!
Well, in my usual headstrong style, I did not use Cubicin first. I like to rebel that way. It’s not much, but it’s all I’ve got these days.
But now I am on Cubicin, because we not only suspect MRSA, we know it, and I’m back to playing by the rules and toeing the line. For now, anyway.
I’ve learned some things. That’s one thing I will say about this “cancer journey” — the education never stops. Just when I think I’ve got it all figured out and have “been there, done that” something new pops up and presents a whole new learning curve.
If someone had asked me last year if I could see myself administering IV drugs to myself at home, I’d have said nope, you’re whacked, there’s no way that’s happening.
And yet, here I am, administering IV drugs to myself at home.
If someone had asked me last year if I could envision a breast cancer diagnosis, a bilateral mastectomy, nearly a month in the hospital, and not one but two teams of infectious disease doctors working to keep a wily infection and its friend MRSA at bay, I would have asked what they’ve been smoking.
Yet here I am, looking at that very scenario.
Life is funny that way. And by funny I mean peculiar, because let’s be honest: there’s nothing funny about any of the things I just listed.
AstraZeneca markets this drug in the US. I’m not sure if Cubicin is the US name for the drug, but whoever named it must have been having an off day. It’s in the daptomycin family, which means precious little except that it adds another notch to my belt. If I were to list all the different antibiotics I’ve been on since May of last year, this post would stretch on and on. Suffice to say I’ve had just about all of them, from Azithromycin to Zyvox, in this long and winding road.
One thing on Cubicin’s website made me laugh: “CUBICIN (daptomycin) is indicated for complicated skin and skin structure infections (CCSI).” Yep, this is complicated all right. I don’t seem to know how to do this any other way. My friend Laura, the transplant nurse, laughs and says, “Nothing about your case has been textbook, my friend.” True, so true.
Cubicin’s website lists the requisite claims of awesomeness along with limitations and warnings. It’s not indicated to treat pneumonia, if you were wondering, nor is it effective for the treatment of left-sided infective endocarditis due to S. aureus. I’m not exactly sure what that ailment is, but I’m sure glad I don’t have it. I do, however, have a problem with the website’s use of “due to” in that construction. Any monkey knows it should be “because of” as “due to” is a temporal phrase to denote time or expectation, not causation. Man, it bugs me when they get that one wrong.
While poorly named and with a glaring grammatical error on its website, Cubicin does have a lot going for it. Namely, the list of side effects is miraculously short. I’ve become well-versed in side effects of multiple drugs (again, part of the education I never knew I’d be getting and really would be just fine not ever receiving).
The worst side effects seem to be anaphylaxis and pneumonia, but other than that, we’re looking at muscle weakness (great, since I can’t exercise anyway why not speed up the atrophy?), peripheral neuropathy, and diarrhea. So if I don’t have an allergic reaction and get pneumonia from this drug, I’ll have weak muscles, some numbness, and be in the bathroom a lot.
That’s a very short list.
There are two things about this drug that are fantastic. Well, three things if you count the very short list of potential side effects.
It is administered once a day, not twice, and it doesn’t require an IV pole from which to hang. This means I’m tethered (literally) to it half as often and while tethered, have complete mobility. Last time I had IV drugs at home, they hung from a pole and I was forever getting tangled up as I tried to move from room to room with them.
I can forgive the less-than-exciting name for Cubicin.
Some of you have asked how this all works, so I’ll tell you. I’ve always wanted to answer viewer mail like David Letterman used to do (maybe he still does, but I don’t stay up late enough to watch him.). Here’s the deal: I have a needle in my port-a-cath that stays in for the duration of the IV therapy. If IV therapy lasts longer than 7 days, the nurses have to change the needle, so they yank it out and re-puncture me with a fresh one.
Not that I’m complaining, but the needle is rather fat, as it has to pierce not just my skin but also the plastic membrane of the top of the port. They call it a butterfly needle, but let me tell you, there’s nothing gentle or fleeting about it. I’ve had my port poked many, many times during this “cancer journey” and in fact, when it’s not in use, it must be flushed every 6 weeks, so off I go to the oncologist’s office to have the infusion nurses prep me like a HAZ-MAT victim, jab the butterfly through my skin, flush everything then yank the needle and patch me up with gauze and tape.
While I don’t mind going to Dr Darcourt’s office for port maintenance (it’s close, parking’s free, and he’s cute), I now understand why Dr Grimes wanted me to come to his office to get started on this round of IV drugs. That said, I will continue to assert that Dr Darcourt’s infusion nurses are better with the stick. Dr Grimes’s infusion nurse, she of the “oh, at least you get new boobs” comment, has a bit of the palsy and visibly shakes. So Shakey comes at me with the butterfly needle, and all I can think is please please please let her get it on the first try, and where is that cocktail waitress, anyway??
Ok, back to business. The port looks like this, but of course it’s under my skin. The thick white tube on the right is sewn into my jugular vein, and the purple part on the left lies just under my skin on the left side under my collarbone. And yes, you did read that right: the port’s tubing is sewn into the jugular vein. That’s how it can empty all the various drugs and dyes into the big gun for distribution throughout my body. When you’ve got an important distribution job to do, the jugular is your guy. Creepy, yes, but very effective and efficient.
So the port is under the skin tied into the jugular, the needle pierces both skin and port membrane, and a thin tubing is attached to the needle with a clamp and a connector cap that attaches to the bag of medicine. It’s maybe 8 inches long, and when I’m not using it, I tuck it in my shirt and go on about my day.
Flashback to this past summer, when I had the first round of IV antibiotics at home. The supplies looked like this:
Much more complicated. I prefer the current version; downsizing is good.
The round balls in the new supplies photo are the “bags” of Cubicin, and I have saline syringes and heparin flushes. Gotta flush the port with saline before and after the drug infuses, to keep everything flowing, then shoot in the heparin after the infusion, to prevent any blood clots in the port’s nooks & crannies or in the tubing or God forbid in my body. The heparin is considered a lock, to keep the clots out.
Here’s the “bag” of Cubicin as it starts infusing. It’s chubby and round with a rod down the middle that helps indicate when the drug is all gone.
I can hold it in the palm of my hand while it’s attached to my tubing and while it flows into my veins. I can set it in my lap and read my book, or take it with me to drive carpool. If I didn’t still have the dreaded JP drains and were carrying my normal purse instead of the sling bag, I could stick it in my purse and tuck the thin tubing aside and go shopping. Sigh. That’s another life. Never mind.
This drug infuses in half an hour. Once a day. I think I’m in love. Last time I did vancomycin and cefapim via IV, it took nearly 4 hours to infuse twice a day, and I was stuck with the IV pole. This is way better, despite the utter lack of shopping.
As it infuses, the bag starts to collapse and the rod on the inside becomes more prominent. One of the infectious disease nurses said that while the drug is plentiful, the rod looks pregnant, and as the drug depletes, the rod gets its figure back. Too bad the figure-reclaiming doesn’t work that fast in real life.
If you’re wondering how this little bag of wonders works without gravity (i.e., hanging from a pole), I can tell you: it’s pressure-driven. Ingenious. It also has a filter on the tubing that prevents any air bubbles from traveling through the tubing and entering my bloodstream. Last time around, we were warned against air bubbles as if they were the devil incarnate, and I stared at the drugs coursing through the tubing, waiting for my heart to explode, and not from happiness.
One day, when this “cancer journey” is finally over (it will end one day, right? right??), I can envision my heart being so filled with happiness that it might explode. One day.