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.
It’s Halloween, and what could be more terrifying (for me) than to find myself eyeball-to-eyeball with the dreaded oral antibiotics? Not much scares me after dealing with cancer and its many-tentacled aftereffects, but these drugs certainly do make me want to run screaming from the building.
Bactrim & Minocycline, the drugs I dutifully swallowed twice a day every day for 267 days, are back. Just a quick 10-day course this time around, as a preventative measure following Thursday’s revision surgery. No big whoop, right?
Uh, not so much.
I gladly received two giant bags of IV antibiotics in the OR Thursday. Levaquin and Vancomycin are the old standbys, and they coursed through my veins Thursday morning like a herd of mighty stallions clearing the path of any wily mycobacterium that might be hanging around after last year’s post-mastectomy infection. IV abx don’t bother me one bit, but the oral ones give me the heebie-jeebies.
After puking my brains out all the livelong day after surgery, I was not ready to swallow those pills. I put it off as long as I could, and had to have a “come to Jesus” meeting with Trevor to make me get back onboard the abx train.
You would think that after taking these drugs for 267 days, a mere 10 days would be a piece of cake.
You would be wrong.
Something inside me seized up and said “Uh-uh, no way, not gonna do it.”
I couldn’t convince myself to start taking these drugs.
Trevor astutely pointed out that instead of seeing this short course as easy, my brain sees it as the equivalent of swimming the English Channel because I’ve used up my lifetime supply of mental and physical tolerance.
He’s clever that way.
I knew I had to take them, of course. I knew the risk of re-infection vastly outweighed the inconvenience of taking the drugs. But I also knew just how awful I was going to feel, and while my rational brain said take the drugs, my irrational self whined like a tired toddler way past naptime.
One dose in, on Saturday, my tastebuds were already shot. I tried to savor one last glass of champagne, to toast surviving yet another surgery and to say salud to my improved shape. But the damage had been done, and my lifetime supply of physical tolerance was exhausted. Cue the nausea, the roiling tummy, the overall puniness, the malaise, and the distinct feeling that something died in my mouth. Nothing, and I mean nothing sounds good to me. Not even Halloween candy. And I really like candy. Especially Twizzlers.
I spent the weekend feeling sorry for myself and wondering how long it will take this time to get back to “normal.”
So far no sign of the elusive “normal.”
Macy sent me off to surgery with her best buds, Froggy and Baby Snoopy. They kept me company Thursday in the triage area while I awaited the arrival of my favorite surgeon and his pack of Sharpies. The nurses who took my vitals and started my IV thought it was so cute that my little girl sent her posse to look after me. I explained that she’s only 9 but she’s wise beyond her years.
Pedey the Weasel Dog kept me company all weekend and happily obliged my sedentary schedule. He’s really, really good at being lazy and laying low, and I’m trying to take a page out of his book.
Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.
I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.
I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.
Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).
Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’ notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.
One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.
I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.
All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.
Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized
I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.
Keith’s crab towers were chock-full of healing properties.
Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.
although Pedey enjoyed every lazy minute of my recouperating.
I’m not sure I ever got that pair back from her.
I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.
The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days.
I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.
That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.
There’s the stuff I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.
While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.
Did those words really come out of his mouth? Why, I oughtta…
Yes, I’m overly sensitive about this issue, because I hate the antibiotics so much. Love that they’re killing the infection, but hate them nonetheless.
Yes, I am still taking my antibiotics. Twice a day, every day. With no end in sight. I haven’t missed a dose, I say proudly, although no one seems to think this is a worthy feat. Sometimes people need a quick left jab, right to the kisser.
Not that I’m complaining. Really, I’m not. I’m glad that I have these drugs in my life. Who knows where I’d be (or whether I’d be here at all) without them. I’ve been on some form of antibiotics since May 13, with just one week off.
There was the precautionary IV dose during and after the mastectomy. Then an oral course at home for the first 10 days out of the hospital. Once I started feeling better, an additional course seemed superfluous. Wasn’t I healing like a rock star, even ahead of schedule in my typical impatient, over-achieving way?
Uh, yeah. So much for that.
Infection: enter stage right and become the star of the show.
Damned mycobaterium has become the bane of my existence. I hate it like I hate Sarah Palin. I wish she would have gotten the myco instead of me. Surely she could have picked it up in one of those mountain streams she claims to ford as she’s impaling innocent salmon. I’d like to see her be all cocky and try to “reload” in the midst of the myco.
But again, I digress.
That happens a lot.
I can’t blame it on “chemo brain,” but I’m going to blame it on “abx brain.” Surely the continual supply of Bactrim and Minocycline in my body all day every day for the last 169 days qualifies me for that small disability.
Yes, that’s right, I counted the days. I like to know just exactly how long I’ve been taking these two drugs, twice a day every day. I also take a dose of Florastor probiotic twice a day every day. The few times I’ve been lazy or resistant to shoving yet another pill down my throat and skipped it, I’ve been sorry. I owe a big debt of gratitude to Susan C. for recommending the Florastor, and if you’re they type who gets an upset tummy while on your week’s worth of Amoxicillin, you should take it too. I typically have a cast-iron stomach, but the 169 days of oral drugs combined with the myriad variations in the hospital, then shaken not stirred with the little bits of good drugs (e.g., Vicodin) thrown in for grins has given rise to a need for Florastor.
Here’s the cast of characters now: the blushing beauty in the bi-colored pink is Minocycline. It’s a member of the tetracycline family, which a lot of people–mostly teens, I guess–take for acne. In fact, one of the many Walgreens pharmacists I’ve gotten to know asked me if I take it for acne. I chuckled and said no, why? And she said, “because your skin is really clear, so I thought it must be working.” I may suffer from hot flashes, mood swings and brittle hair but by golly my skin is clear. I like that pharmacist a lot.
I’ve been trying to be very vigilant about taking my meds properly, rather than tossing them back and washing them down with a flute of champagne. Or two. Or three. Hypothetically speaking, that is. I’d never do that for real.
I’ve even read the literature that comes with the drugs from the pharmacy. Talk about a giant mess of C.Y.A. Take this little gem for the Minocycline: “Take this medicine with a full glass (8 oz/240 ml) of water” (not champagne?). I like the idea of 240 ml of bubbly. “DO NOT LIE DOWN for 30 minutes after taking this medicine.”
Well, I admit it’s been a while since I’ve read this info. Like 169 days, probably. And in my “abx brain” haze, I didn’t remember the DO NOT LIE DOWN part. Every night, I mean every single night, I gulp down the drugs with a sip or two of water, which is by my bedside, then I promptly LIE DOWN AND GO TO SLEEP. Oops. If my failure to NOT LIE DOWN means the Minocycline isn’t working, I’m going to be really mad.
This part of the Minocycline’s instructions is particularly vexing: “DO NOT TAKE THIS MEDICINE with food or milk unless otherwise directed. This medicine is sometimes taken with food or milk, however, certain medicines, food and milk may bind with Minocycline, preventing its full absorption.”
What’s a girl to do — take it with food or milk, or not? I don’t like instructions that include “sometimes.” I prefer black & white directions.
Here’s one part of the Minocycline instructions I can willfully and completely ignore, though: “THIS MEDICINE IS EXCRETED IN BREAST MILK. DO NOT BREAST-FEED while taking this medicine.” Ok, I won’t. I promise.
After you’ve finished laughing uproariously, as I did when I read this, let’s move on to the second antibiotic, Bactrim. This big guy is a member of the sulfameth family. Sadly it has none of the desirable characteristics of meth-derived drugs like increased energy, decreased appetite, effortless weight loss and eternal youth.
It’s just a big, nasty, chalky pill.
Here’s a handy little graphic to show you just how big and just how nasty it is.
Twice a day, every day. For 169 days and counting.
It’s not without its humor, though. An excerpt from Bactrim’s monograph made me laugh again: “DO NOT STOP OR START any medicine without doctor or pharmacist approval. Inform your doctor of any other medical conditions including liver or kidney problems, blood problems, asthma, HIV, allergies, pregnancy or breast-feeding.”
Those last two made me chuckle, and I felt safe in crossing those off my list of things to worry about. Onward.
Bactrim, too, is picky about how you take it, and the monograph advises taking it not only with a full glass (8 oz) of water, but to also drink several additional glasses of water daily. No indication of how many ounces those glasses should be, though, and not a mention of milliliters to be found. Curious. I’m just glad it doesn’t yell at me to AVOID TAKING THIS MEDICINE WITH A FLUTE OF CHAMPAGNE. That would be depressing.
Here’s the best part of the nitty-gritty details of Bactrim, and I quote, “LONG-TERM OR REPEATED USE of this medicine may cause a second infection.”
Did that really mention a second infection?
Excuse me while I go get some champagne.
I’ve been a pretty good girl this year. I’ve smiled at fussy babies in checkout lines at HEB. I did my time at the grade-school class parties (not my scene, to say the least). I called the collection agency back — yes, I really did — when they left me a message saying I owed money on a past-due hospital bill that my insurance company says has been paid. I donated nearly-new clothes & home goods to charities multiple times. I helped out with the school fundraiser, even though I really, really, didn’t want to. I’ve said please and thank you and bring my own bags. I was a big girl and good sport about all the trips and baseball games I missed this past summer.
And while we’re on the topic of this past summer, dear Santa, do ya remember all the hell I went through? It all started on April 27, 2010, when I was diagnosed with breast cancer. Talk about an “aha” moment. The timeline quickly unfolded like this: the rest of April and first part of May were consumed with tests, tests, and more tests: BRAC analysis, CT scans, x-rays, PET scan, bone scans and MRI. In case that’s not enough acronyms for ya, there was also the L-Dex and then the genomic typing of ER/PR positive and HER2 negative. More injections and blood draws than my poor left arm’s veins could keep up with (literally; there’s a permanent knot in the big vein). Countless appointments with the breast surgeon (Dr Dempsey, who is on the “nice” list) and plastic surgeon (Dr S, who may be on the naughty list), and 3 different oncologists.
Meanwhile, there was research to be done and crushing decisions to be made as I prepared for surgery. The phrase “life and death” took on a whole new meaning, sweet Santa. There’s a strange juxtaposition between packing school lunches and signing field trip permission slips while also filling out my medical directive and living will. I learned pretty fast how to act normal when everything around me had been turned upside down. I think, dear Santa, I also did a pretty good job of adjusting and adapting to the new normal. I think, fat man, I’m still doing a damn fine job of that. One quick look at my profile tells you that there most definitely is a new normal around here.
Santa baby, I was a good girl after the double mastectomy and the lymph node removal that left me battle-scarred and weary. I was an especially good girl in the face of the plethora of prescription drugs I could have used & abused. I was a diligent girl when it came to choosing green drink over Diet Coke, all-natural hormone-free yogurt over Blue Bell.
Santa, I was a brave and good girl when the nasty infection set up shop in my still-raw chest wall. I endured the 103-degree fevers, 22 days in the hospital, multiple tissue excisions and untold poking & prodding without much complaint. I missed the comforts of home, my dogs & my kids more than words can say, but I only cried twice. And even then, it was when no one else was around to see.
We don’t even need to recount the 18 days during which I was attached to the wound vac 24-7. I would really like, dear Santa, to permanently erase that memory from my grey matter, por favor. But I would like to remind you that I was a trouper during the home health days, and all those hours that were consumed with wound care and the administration of IV antibiotics. And while I’m at it, can I get a little shout-out for not killing Dr S, even though he probably deserved it?
Oh Santa, I do crave some credit for all the antibiotics I’ve endured — and continue to endure. From the Vancomycin to Cefapim, from the Cipro to the Zyvox, from the Biaxin to the Bactrim and Minocycline. Those last two will be part of my daily routine for a few months yet, but I’m already looking forward to the day in which I don’t have them on my kitchen counter anymore.
So Santa, how about we make a deal? I’ll set out all the milk & cookies you want in exchange for one little thing. All I want for Christmas is to have it easy for awhile.