Abx, redux
Posted: August 18, 2011 Filed under: breast cancer | Tags: click it or ticket Texas, gratitude, post-mastectomy infection, psychological effects of cancer 3 CommentsAntibiotics. The mere sight of that word makes my skin crawl and my stomach clench, but I have to be a big girl and take these damned drugs. Again. It’s for a short time this time, which is good, and for which I should be grateful.
Just like I should be grateful that I have enough sense to suggest a prophylactic antibiotic with yet another surgery on the horizon.
I should be grateful that I have comprehensive health insurance and can get 2 prescriptions filled for less than $10.
I should be grateful that even though my Walgreens around the corner had a fire and is closed for a month, there’s another store a few miles away that had my prescriptions ready.
I should be grateful that I have the means to also buy the $50 worth of probiotics I’ll need to keep my intestinal tract from revolting against the onslaught of preventative drugs.
I should be grateful that I have an unlimited supply of Greek yogurt to help the probiotics battle the imbalance of bacteria in my gut.
I should be grateful that I have this forum in which to bitch, moan, and complain about having to go on these damned drugs yet again.
I should be grateful that my cancer wasn’t worse, was caught early, and is manageable.
I should be grateful that although I was one of the unlucky ones to get a post-mastectomy infection that rocked my world and wrecked my summer, I got better. Slowly (veeeeery slowly) and surely, I got better. Mountains were moved, heavens and earth were too, but I got better. Just when I thought it was never going to happen, I got better.
I’ve never been a big fan of all the “shoulds” in our life. I tend to favor a more laissez-faire attitude of do what you want to do, as long as you fulfill obligations and inflict no harm.
I’ve also got a bit of a stubborn streak, so as soon as I hear that I “should” do something, my first instinct is to turn around and do the exact opposite. Charming, I know. Seatbelts are the prime example. It’s a state law in Texas — “click it or ticket” — for drivers and front-seat passengers to wear seatbelts. If you’re busted unbuckled, you’ll be looking at a hefty $200 fine.
I know full good and well the statistics on seatbelt use and crash fatalities, and of course my kids are buckled every single time we’re in a vehicle. Yes, I know that Princess Diana might well have survived her fatal car crash if she’d been buckled. Same goes for my sweet Uncle Wilford. But I don’t like to wear my seatbelt, because the State of Texas tells me to. My kids usually bust me before a cop has the chance to. They’ll notice I’m unbuckled and fuss at me, so I comply. But I don’t like it. 
Sometimes the “shoulds” get the best of me.
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 CommentsI’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.”
Change of plans
Posted: August 16, 2011 Filed under: breast cancer | Tags: DIEP, mycobacterium, post-mastectomy infection, REM, the Big Dig 9 CommentsYesterday was pretty crazy. We were stranded Sunday night in Boston because of weather and heavy air traffic in the New York area, and had to spend the night in a hotel. We made the best of it, but being a day behind schedule bugs me and my type-A ways, especially when my to-do list is long and my time for completion is short.
I’ve traded the beach views for the view of the lake across the street, and while the vacation was fabulous, there’s no place like home. I love the beach and never tire of the sound of the crashing waves, but there is something to be said for the comfort of sleeping in my own bed.
Monday was supposed to be my day to “get ‘er done” and take care of all the pre-op chores. I did indeed get it done, but was half a day behind because instead of hitting the ground running, I was traveling from Boston to Houston. Don’t be jealous when I tell you I spend yesterday unpacking, going through a big stack of mail, sorting the recycling, doing laundry, getting groceries, organizing school supplies, returning phone calls, and giving thanks & treats to our pet sitters.
Today would have been a similarly busy day, but instead of wrapping up last-minute things before the surgery, I was fielding a call from my doc’s office tell me that the surgery had to be postponed. The surgical center that he uses for the type of procedure I’m having is under construction and behind schedule. Did I mention that I don’t like a change of plans?
My brain has been racing with details of the to-do list, and unwelcome thoughts of the surgery keep bulling their way in. I’ve been strangely nervous about this procedure. I expected to be joyful and excited but instead I’m uneasy. This should be a piece of cake compared to the many previous procedures; it’s out-patient for once. It also should signal my approaching the home stretch. I’m not there yet, but with this surgery behind me I would be one step closer.
So why the nerves? As REM would say, “What’s the frequency, Kenneth?” I have no idea, but perhaps it was my instinct telling me it’s not time, it’s not going to happen. Perhaps it’s the proximity to the start of school and the end of summer. I’m not good with transitions and definitely don’t like change (part of the Type-A package, perhaps?); even though the shift from summer to starting school is usually quite welcome (for me, but not my kids), I’m struggling this time around. I’m all ready, but still feel like there’s not enough time. This procedure has been in my mind a harbinger of the end of summer and the beginning of the elusive pursuit of getting back to “normal.” When I endured The Big Dig in March, I knew that as gee-gantic as that surgery was, it wasn’t the end of reconstruction and that a couple of revisions would be required. Once everything settled, so to speak, after The Big Dig, I was left with a decidedly less-sunken chest and absence of post-mastectomy-infection scar tissue. Things were much improved in the chest region. However, as with most masterpieces, the first draft wasn’t the final draft.
The second draft was scheduled to commence at 6:30 a.m. tomorrow in a hopefully-germ-free surgical center instead of the mega hospitals I’ve been in for the previous gigs. The goal is to reallocate some fat from the ends of the 17-inch belly incision to fill in the not-quite symmetrical boobage. I’m requesting that my doc fine-tunes my belly-button scar, which is kinda grody, and he will also work his magic on the spots of scar tissue along my belly incision. There are several pea-sized spots that are quite the menace: pain, throbbing, and impaired mobility top the list.
I hope that there will also be some cleaning up of the “whale tail” ends of the belly incision. As the moniker suggests, the ends of that big-ass incision look like a whale’s tail, and while I marvel at the giant sea creatures, I don’t want a facsimile on my bod. Thank you, googleimages, for the visual. Imagine that lovely tail upended vertically instead of horizontal and you’ve got a good idea of what the ends of my giant incision look like.
But alas, none of this will happen tomorrow, and I have to wait. In addition to not liking a change of plans, I’m not a big fan of waiting either.
The reason for the delay is legit, yet my cries of “find me another surgery center so we can stay on schedule” went unheeded. It seems that the surgery center I was scheduled for has the right equipment for the fat transfer procedure, and while we certainly could find another gig, there’s no reason to rush it and every reason to wait until all the conditions are right. Not every surgery center/hospital has the stuff my doc needs to suck out my fat, and the one that does have the right stuff isn’t accommodating patients just now.
Three things about my visit to the doc today that were unpleasant, besides the news of the delay. First, he introduced a possibility that I had not considered: infection.
Oh yes, infection.
The very thing that dominated my life for most of the past year is now conveniently shelved in the way-back recesses of my brain. I hadn’t even thought about the possibility of re-introducing or re-acquiring an infection. Yet as my doc lovingly pointed out, with me you just never know.
So he’s thinking of sucking the fat out of the dog ears and throwing it away. Sounds great, right? Get rid of the little bulges at either end of the big-ass incision. I’m all for that. But then what do we use to smooth out the not-so-round part of my newly constructed chest?
And that brings us to the second thing that was muy unpleasant during my appointment today: the search for other sources of fat.
I thought I’d plumbed the depths of humiliation with the “grab the fat” game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.
Humiliating doesn’t quite cover it.
But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.
And in closing, we’ll cover the third and final unpleasant thing about my dr’s appointment today: prophylactic antibiotics.
Yes, that’s right: I used the “A” word. Antibiotics. Again.
I’m going back on my old friends Bactrim and Minocycline as a preventative. Just in case any wily bacterium were thinking of re-establishing a house party on my dime. I’m nauseated just thinking about it. I spent how many days taking the dynamic duo? 267. Yep, 267 straight days of swallowing 2 pills every 12 hours.
Is there no end to this madness?
Stay tuned.
At the ballpark, again
Posted: June 22, 2011 Filed under: baseball, breast cancer | Tags: baseball, breast cancer, cancer battle, cancer diagnosis, family, First Colony All Stars, gratitude after cancer, hospital, infection, infectious disease, life after cancer, Little League, mycobacterium, nosocomial infection, post-mastectomy infection, psychological effects of cancer, survivor, young kids and cancer 5 CommentsLast summer was pretty bad for me and my family. It started innocently enough, with a bilateral mastectomy at age 40 on May 13th, and while I healed quickly and nicely from that, it all went downhill fast.
Just after my 41st birthday, I got a nasty post-surgery infection. No one saw it coming, and to say it took us all by surprise would be a gross understatement. The odds of contracting a nosocomial infection are not small, but my infection is somewhat rare, quite wily, and super slow to treat. In the scope of inconvenient infections, I won the lottery.
Last night was the first game of the All Star tournament for Payton’s team–something I missed entirely last summer. Being present last night to watch my boy do what he does best with his team of like-minded and uber-talented buddies was one of the simplest yet deepest thrills of all time. We take a lot of things for granted in this life of ours, and being able to sit on metal bleachers in the Texas heat in June to watch youth baseball is one of those things. I’ve sat through thousands of games for my little ball player, and hardly thought twice about it beyond the random, mundane thoughts associated with this endeavor: who are we “versing” (as our catcher, #10 Carl says)? Where is Payton in the line-up? Are we on the shady side of the field? Did I remember my stadium seat? How many times will Macy hit the concession stand? How many pieces of bubble gum does Pay have in his mouth at once?
Those are the thoughts that traverse my brain during a game, along with the usual baseball stuff: What’s the run rule in this tournament?; How did we fare against this team last time we met? If the ball hits the bat then hits the batter, he’s out, right? Rules and regulations course through my head as I follow the many games my boy has played.
Last night was different, though. As I was ready to walk out the door, our bestie Ed reminded me that I’ve come a long way since this time last year. Several of the parents on our team remarked at the park that it’s nice to have me there this year. A couple of the coaches said something about having missed me and my big mouth last summer; once a cheerleader, always a cheerleader.
I have come a long way since last summer, and watching my kid play ball is something to be savored, something to most definitely not take for granted. The metal bleachers, the roar of the crowd, the (gross) smell of hot dogs, the infield dirt blowing in my eyes…every bit of it is special to me on a whole ‘nother level.
Last night also marked the first time a newspaper reporter has covered the game, and seeing my boy’s name in print in association with his rock-star team’s blowout and his personal success is something I’ll be savoring for a while. Before cancer came into my life, I would have enjoyed reading the article, and likely would have forwarded it to our nearest & dearest, but this time, I’m carrying the feeling of that article along with me, inside my heart, in that little space where the gratitude lies.
I was flipping through my old Caring Bridge blog, and happened upon this entry, which seems even more prescient a year later. I wrote this on the morning of my mastectomy, before leaving for the hospital. No doubt I was antsy, preoccupied, and ready to get the show on the road that morning. It seems appropriate to reprint it today, in light of the theme of today’s blog.
I realize that when cancer comes into one’s life it disrupts everything and changes “the normal” forever. Dr Dempsey, my superstar breast surgeon, told me you no longer schedule cancer around your life, you schedule your life around your cancer. Life takes a backseat to war.
With cancer, I join a club that I never signed up for and for which I never wanted to become a member.
No matter, I now have a new normal. The new normal is all about taking care of what’s most important. We hear this all the time, but when you really put it into play in your own life, you know exactly what it means. For me, it means facing this beast head on and telling the bastard repeatedly that it doesn’t stand a chance. It means never once, not even once, considering that this cancer will win. It’s not even in the game.
It also means all the pithy stuff you hear about, like savor every day, make the most our of whatever you’ve got. That’s also true. For me it means truly embracing and enjoying my kids and my family, and letting my friends into my life — warts & all — on a whole new level. Y’all may well see my house a mess, which doesn’t happen much. You may see me in a grumpy mood (ok, you’ve seen that, esp on the tennis court!). You may see me just a teensy bit vulnerable, but only for a short time so don’t expect a repeat performance. No matter what, there is a new normal, and I’m all over it.
The best news in a long time
Posted: May 6, 2011 Filed under: breast cancer, drugs, infection, tennis | Tags: Antibiotics, infectious disease, mycobacterium, nosocomial infection, Pommery, post-mastectomy infection, Seinfeld, tennis, witch is dead, Wizard of Oz 16 CommentsAfter 267 days, I finally heard the words I’ve been dreaming about: “We are discontinuing the antibiotics.”
Cue the hallelujah chorus.
I saw Dr Samo instead of Dr Grimes today, and he delivered the most-excellent news. He is my new best friend. All of the cultures run during The Big Dig came back negative, which means we can safely assume the post-mastectomy infection is gone. Yes, at long last, the mycobacterium has been vanquished.
Let me say that again: the infection is gone. I’m cured.
No more twice-daily dose of minocycline and bactrim. No more nausea. No more planning my consumption of food & drink around my doses. No more remembering to take my drugs. No more antibiotics.
Oh, happy day!
I’m still in a mild state of shock, or maybe just slightly buzzed. Could be the celebratory champagne straight away after returning from the medical center (duh), and the margarita at my tennis team’s end-of-season lunch. 
We broke out the good stuff and gathered our close circle of friends who would never say “it’s too early” and question the wisdom of popping a cork at 11 a.m. To Amy, my chief medical correspondent and chauffeur to & from appointments: thank you. For everything. To Jill & Keith: thank you for rushing right over, then leaving as soon as the bubbly was gone. But for planning to come back with dinner.
My tennis team’s luncheon was already planned, but how fun to celebrate my big news with some of my favorite girls? And how cool that they gave me a huge, signed tennis ball? Thanks, girls!
The infection is gone. Ding dong, the witch is dead.
I half expected the citizens of Munchkin Land to come out and dance their little legs off and sing in their froggy voices to celebrate.
I admit, I’ve been wondering all week if my visit to the infectious disease doc today would result in the end of the abx. I was trying to not get my hopes up, and while I knew not to expect it, I would have been disappointed if they’d said keep on swallowing those pills. No matter. It’s all good now.
I will also admit that when the nurse was taking my BP and temp and asking me the reason for my visit, I felt funny saying “yes” to her question of “are you here to see if it’s time to get off of the antibiotics?” It was almost too much to hope for. Almost.
Then when Dr Samo uttered those glorious words of “We are discontinuing the antibiotics,” I was stunned. It was a bit surreal. Once I grasped what he’d said, my first thought was that “discontinuing” meant taking a break, not stopping them altogether. 
It was almost too much to take in.
As my best buddy Ed said, “I feel I should shove you and yell ‘Get Out!’ like Elaine on Seinfeld.
“Get Out!” indeed.
The end of the antibiotics is like an end of an era. My life has revolved around them for so long now–one week shy of a year, in which I’ve been on some form of abx, whether oral or IV. Nearly a year on some pretty powerful drugs, and none of them the fun kind. Nope, these are the ones that tear up your stomach and make your insides cry like a baby.
But no more.
Big sigh.
The fat lady can sign her heart out right now.










