One of the many blogs I read is a fine one published by a lovely woman named Marie in Ireland. It’s called Journeying Beyond Breast Cancer, and Marie’s goal via her blog is to provide some guidance on how to navigate the “post-treatment limbo” that cancer survivors find themselves in once “it” is all “over.” There’s plenty of information out there for those who’ve recently been diagnosed and for those who are actively in treatment, but not much out there for the “what next?” portion of the “cancer journey.” I was honored to be a guest blogger on Marie’s site in February, and I always come away from Marie’s blog feeling enlightened and empowered. (And really, I’m not just sucking up because she’s giving away a copy of Sheryl Crow’s new cookbook, which I really, really, really want. I mean it. Marie’s blog is fantastic.)
Marie posed a challenge to her blog community to write a post about our “other” lives, about who we are when we’re not fighting cancer. We cancer-chicks who blog tend to know a lot of intimate details about each other, as is the nature of the beast we all have in common, but we don’t always know a lot about each other besides the beast.
Never one to back away from a challenge, I ruminated on my B.C. (before cancer) life. It took me awhile to remember, so wrapped up have I been in the cancer-vixen lifestyle. I racked my brain to recall what it was that I used to do with myself absent multiple doctor’s visits, endless testing, countless trips to the pharmacy, and hours of feeling yucky.
It was a perfectly ordinary life. I’m not one for a lot of drama; I’ve been to high school, and don’t have any desire to replay it. I have no patience for grown-up “mean girls” and so have a tight circle of true friends. We live an ordinary suburban life, most of us at home during the day, having forgone careers to raise kids, although several of my besties do work outside the home and do amazing things like crude trading and nursing. Ok, I’d better clarify: one friend trades crude oil, and another is a nurse. Since this blog is usually about all things boob-related, I don’t want to give the impression that I’m talking about crude nursing, as in off-color breastfeeding.
So my life was pretty ordinary, pre-cancer. Ordinary, but good.
I left my editing job 12 years ago, when Payton was born, to become a full-time mommy, and after Macy joined the herd my workload doubled but so did my heart. As my kids got older and started school, my life took on the pattern of theirs and I volunteered at their school a lot while also spending some time doing my own thing. I walked that fine line between being a full-time mom but still being my own person. Like millions of other moms at home raising young kids, I packed my kids’ lunches while doing laundry and tried in vain to keep up with the household chores. I stole some time from the domestic hustle & bustle every day to go to the gym or play tennis, and made my to-do list while waiting in the carpool line.
My pre-cancer schedule was pretty full of ordinary things: kids’ dentist appointments, play-dates, sports, lessons, and parties. I served on the PTA board, was a tenured room mom, and worked the school book fair every year. Shortly after my mom died I was at the book fair, surrounded by books and overcome with loss. I missed my mom so much; she was an avid reader and we always talked about the latest stack of books on our nightstands. I met another mom who was volunteering that day. Jenny was new to our school, having recently relocated to Sugar Land. We chatted about books, and she shared with me that her dad had recently died, and she was swamped by grief, too. I decided then and there to start a book club, and to invite her to join me. Instead of allowing my sadness to rule, I wanted to find a way to diffuse it.
I had no idea at that time that Jenny was a breast cancer survivor and would become my mentor and tour guide through the “cancer journey.”
Meeting Jenny was an extraordinary event in my ordinary, pre-cancer life. Along with my Runnin’ Buddy and our nurse practitioner friend Laura, Jenny and I comprise a quartet of book-lovers who meet once a month and discuss the book we’ve read. Five years later, we’re still going strong. We’ve read some amazing books as well as a few clunkers, and are constantly on the look-out for the next great read.
When I first started running the book club, I would research book group discussion questions and print out a list for each of us. Over time, I’ve gotten lazy and now just highlight an interesting passage, a particularly pivotal plot point, or a bit of prose that speaks to me for whatever reason. This is the basis for our book club’s discussions nowadays.
I’ve always loved books, for their ability to transport us to other worlds. The written word is precious to me, and I suppose it’s in my genes; my mom was an English teacher, after all. I chose my college major (journalism) based on the right ratio of the least amount of math & science and the maximum amount of literature. My career in publishing and editing surprised no one, and I continued to read copiously after leaving the industries for motherhood. True, most of what I read was written for the preschool crowd with a heavy emphasis on pictures, but I started building my kids’ libraries long before they could read. I suppose it was perfectly natural for me to start a book club.
Just in case you’re wondering if I sit around and read all day when I’m not fighting cancer, the answer is no. I spend as much time as humanly possible playing tennis, then I sit around and read for what’s left of the day.
I had hoped to write about this Saturday, before it began to seem like old news, but life conspired, and then this not-yet-old story was preempted by the sad news of my aunt’s death yesterday.
We need to focus on happier times, for sure.
Like this past Friday.
We gathered to celebrate the blessed birth of The Rajah.
Some have asked me the significance of The Rajah’s nickname. He’s my fiercest opponent in Words with Friends. He’s the king of playing “qi” for a bazillion points. I fired back one time with the word rajah, which he promptly contested. The guy who rings me up by playing “qi” is balking at rajah. Priceless. Thus, my Runnin’ Buddy’s hubby will forever more be known as The Rajah. Just as his personalized golf towel says, The Rajah rules.
We commandeered the patio at El Tiempo Friday night for margaritas and fajitas and to celebrate The Rajah. A good time was had by all. The weather was beautiful and unseasonably mild, as it should be for The Rajah; the drinks were plentiful; the food delicious; and the company quite entertaining. It was a bit of a do-over for celebrating the Rajah; last year on his special day, I was a bit busy getting sliced & diced in the OR.
Pete, Amanda, and I shared more than a few laughs on the patio, and while The Rajah was holding court on the other end of the table, we made our own fun.
I was adamant that this celebration belonged to The Rajah alone, but my Runnin Buddy and Amanda conspired to carve out a bit of time to commemorate my 1-year anniversary of the mastectomy. Very thoughtful, girls. Thank you, thank you very much.
My own cupcake, complete with pink-ribbon-style frosting and a gigantic gumball on top. How much I love that is hard to express. The little umbrella was compliments of my new friend Scott, who had explored the oh-so-manly joys of drinking a pina colada after golf that afternoon. He’s secure enough in his masculinity to have consumed another one, in between the Miller Lights, at El Tiempo. The Rajah cleverly switched Scott’s ringtone to The Pina Colada song, so every time Scott calls The Rajah, that fantastic and timeless song will play; it doesn’t get much better than that. I’d forgotten about the line in the song in which Rupert says “I am into champagne” so definitively. I have a new appreciation for that little ditty.
So what about the columnist? This, my friends, is where my Runnin Buddy tried to get me trouble, yet again. Just as she did recently at the Jimmy Buffet concert when she spun a quite-believable tale to an innocent bystander in the beer line about me being an on-air personality, she spun another tale at El Tiempo to another unsuspecting bystander.
The topic of this little blog came up, and Amanda’s husband Billie was uninitiated in all things Underbelly. Somehow he interpreted this little blog to be a column (any idea how that happened, Staci??), and innocent bystander Chad got the impression that this little blogger is actually a columnist for some publication called Time Magazine. Hmmmm.
To Chad, I hope you were so knee-deep in El Tiempo’s famously potent margs that you don’t recall being duped. That really wasn’t nice. On behalf of my Runnin Buddy, I apologize.
To Billie, I offer no apology but proof that you are indeed “column-worthy” and today is your lucky day because here you are, smack dab in the middle of the Columnist’s column. Hope you’re not too disturbed by the paparazzi that is sure to follow your mention in the column.
And BTW, Billie, hope you now know not to challenge me to drink a tequila shot. ‘Cause I’m gonna do it. But only if it’s Don Julio 1942, which as you learned Friday night, ain’t cheap!
Happy Birthday, Rajah! And congrats to Billie for becoming column-worthy. Hope it’s all you expected it to be, and maybe a little more. Kinda like a shot of Don Julio.
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.
Y’all are in for a treat today. Sit down, grab a beverage, put your phone on vibrate for this, because you’ll want to read this uninterrupted. My friend David has created a marvelous original piece just for Underbelly readers. He’s enormously talented with the prose and the pen, and as if the story itself isn’t enough, the illustrations are fabulous. I think it’s terrific, and it’s a perfect recap of my cancer-versary, which I feel compelled to continue celebrating. I favor the total birthday week, so likewise I may have a cancer-versary festival for as many days as my liver can stand. IMHO, now is always the right time to pop open some bubbly (I like later, too).
Those of you who have followed my story over the last year, with all its ups & downs, will know of my special relationship with my plastic surgeon. He and I have really gotten to know each other well during my “cancer journey,” and while I tease him sometimes (and drive him crazy all of the time), I have enormous respect for him and his amazing craft. We have a closer-than-normal bond because of the post-op care I’ve needed, and he’s been there for me every step of the way: entertaining me, enlightening me, engaging me, but in the end, taking phenomenal care of me. I trust him with my body and with my life. His work is simply stunning, and I’ve seen firsthand how he can transform a cancer-ravaged, wrecked body into not just a vessel for our souls but also a work of art.
So, in honour of my favorite doctor, I give you…
The Wubbulous Dr. S
And of all plastic surgeons, I’m strictly the best.
I see your mastectomy’s left you flat-chested,
Well, my reconstructions have never been bested!
If it’s hooters you want, then it’s hooters I’ve got.
I’ll shape up your shape till you’re hotter than hot.
You want to be buxom, then buxom you’ll be—
and you’ll be the envy of all that you see!
How can I do this? I’ll try to explain,
But it may be too much for your non-Doctor’s brain.
For, once I unveil this special contraption,
You’ll be quite amazed—it’s a natural reaction.
Behold! I give you the Balloon-Boob-U-Latron,
Which will stack up your rack to the stars and beyond!
And with this little dial on the side, I can choose
Whether you will get Double-D’s or…W’s.
So step right on up and I’ll rev up the engine.
By week after next, you’ll get LOTS of attention.”
“It sounds,” I replied, “Just too good to be true,
And besides, I don’t want DD or W.
I’m happy with simply a B or a C.”
“Nonsense.” He retorted, “Just listen to me.
As I said, I’m a DOCTOR. I’m SMARTER than you.
I’ve got major degrees coming out the wazoo.
You just sit back and whistle, while I do my stuff.
I’m starting the engine. You’ve said quite enough.”
And he chose Double-J on that knob on the side.
And I sat there and whistled. That’s all I could do.
But then two hours later he said, “We are through.
Behold! They’re magnificent!” Then I looked down.
“I don’t see a difference.” I said with a frown.
“Of course not.” He said, “For your eyes are untrained,
But I am a DOCTOR. I’m quite largely-brained.
They’re just getting started. You’ll see. They will GROW.
Trust me. I’m the best—Dr. S—and I KNOW.”
I went home, kissed my kids, then I laid down to rest,
And when I woke up, I saw shape in my chest.
Not much, I admit, but the doctor was right.
They were growing. And kept growing all through the night.
I woke up next morning, completely in shock.
I couldn’t believe it and, quick, called the doc.
“Dr. S,” I said, “Now for the shocker of shockers.
Something,” I shouted, “is wrong with my knockers.
The one on the left’s growing stronger than strong,
But the one on the RIGHT is decidedly WRONG.”
“Hmmm. You’d better come in,” Dr. S said. “I’m fairly
Sure something has happened that happens quite rarely.”
When he saw me, he flinched. I was very lopsided.
“You have an infection,” the doctor confided.
“A mycobacterium. That is my hunch,
And my LARGE doctor’s brain knows these things by the BUNCH.
I know just what to do. There’s no need to debate it.
The one on the left…we’ll just have to deflate it.
And we have other options to give you new breasts,
But I am a DOCTOR, and doctors run TESTS.
I’ll get back to you shortly. Just wait and you’ll see.
Meanwhile, I’ll send you to deflating room B.”
So my boob was deflated, and so was my mood,
And the next time I saw Dr. S, I was rude.
“Look here, Dr. S,” I said. “I mean no trouble,
But I live inside of the SUGAR LAND Bubble.
I know you’re a DOCTOR, but I say, what of it?
You can take your Balloon-Boob-U-Latron and just shove it!”
“Tut, tut,” Dr. S said. “I expected as much.
A Sugar Land patient needs a delicate touch.
I’ve run many tests on your bodice, you see,
And the answer’s so clear for a Doctor like me.
What you need is a TRAM FLAP procedure! I know,
Because I am a DOCTOR, so on with the show!
Since you’re a non-Doctor, I’ll lend you a hand:
TRAM FLAP stands for ‘Tit Repositioning And
Moving Fat Like A Puzzle’, which quite simply means
That you’ll have to gain weight. So, goodbye, skinny jeans!
You must grow a big belly to give me the fat
That I’ll move to your boobies, to make them un-flat.
So go forth and EAT! Eat ice cream! Drink shakes!
Gobble bon bons and beignets and beezlenut cakes!
Grow the fat for new hooters. Get busy. Get LARGE.
(The fat on your ass you can keep, at no charge.)
And because I’m a DOCTOR, I must prescribe PILLS!
Pills for THIS and for THAT and for medical bills.
The mycobacterium must go away,
So you must take these pills twenty-four hours a day.
AND because this procedure is tricky as treacle,
I’ll need an assistant. Please, meet Dr. Spiegel.”
Then in walked a woman so lithe and so smart
That I almost felt jealousy deep in my heart.
So, now I had Drs. S1 and S2,
One doc for each boob. What the sam hell to do?
And as soon as I met with S1 and S2,
It became quite apparent (as things often do)
That a struggle for power was starting to brew
About which doc was MY doc,
And who was the MAIN doc,
And who would I see when this process was through?
So for weeks I ate pastries, popped pills, and drank shakes
(And martinis and beers because that’s what it takes)
Till I had so much weight in my belly and butt
That I bore a resemblance to Jabba the Hutt.
At my next appointment, they pinched, poked, and prodded,
And at last both my doctors stepped back and they nodded.
“You’re simply ENORMOUS,” said Dr. S1.
“As big as a WHALE! What good work you have done.”
Then Dr. S2 added, “Yes, I agree.
There’s plenty of fat here. Just leave it to me!”
“Excuse ME?” shot S1, “But I won’t stand for that.
YOU can assist ME, while I move her fat,
For I am a DOCTOR…”
“Oh yeah? So am I.”
And in the stunned silence, they stood. Eye to eye.
But I finally spoke up and I said, “Ugh! For shizzle!
Yes, I KNOW you’re both doctors. I KNOW you’re both wise
But it’s MY reconstruction, so shut up, you guys.
Dr. S1, you have cosmetic vision,
So, you’ll do the OUTSIDE stuff. That’s MY decision.
Dr. S2, you’re as detailed as hell,
So you’ll move my fat, and blood vessels as well.”
Then they stared at me—stunned—like the strangest of fish,
And then Dr. S1 said, “If that’s what you wish,
I will finish the outside. But YOU, Dr. Spiegel
Must make room for ME and my extra-large ego.”
“All right,” said the slightly dejected S2,
“When I am all through, I’ll give over to you.”
“And she’ll be MY patient,” shot Dr. S1,
“She’ll be mine, mine, mine, MINE, from the moment we’re done.”
“Time’s a-wastin’. Let’s do it. Get going, you guys.”
So they wheeled me to surgery, both did their jobs,
And when we came out, I had spanking new yobs!
“Well, what do you think?” asked S1 and S2.
I replied, “I’m just glad that this whole thing is through.
I have boobs, and that’s fine, but I was fine before,
I just want my LIFE back. There’s so much, MUCH more.
I want to be free, be a mom, be a wife,
Write an end to this chapter of my so-called life.”
And what happened next? Well in Who-ville they say
That the doctors’ small hearts grew THREE sizes that day.
My story had touched them. It lifted the fog
Of their arrogance—and gave me stuff for my blog.
So, thanks to the doctors—their wisdom and skills,
Their sense of perfection, and even their pills.
I’m alive. I am whole. Though my journey’s not finished,
Was it really just yesterday that I blogged about how I rarely have trouble coming up with a topic about which to blog because my medical life is such an extreme cluster? Yes, I believe it was. Is it weird to quote yourself? Hope not, ’cause here goes: “…the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.”
Really??? Ya think? I especially like the “flare-up, break-down, or blow-out” part. I really appreciate a good turn of phrase, even when it’s describing my own hot mess.
Although I would love to parlay this instance into a new career as Madame Z, the all-knowing and all-seeing teller of fortunes, I know I’m not prescient. Oh how I wish I were, and I could see how this complicated tale would end.
I got some news yesterday that well, for lack of a better word, sucks. Just sucks. This week has not been good. I could blab on about all the reasons it’s not been good, first and foremost my own deranged impression that by this point, 3 weeks post-reconstruction, that I’d be on the mend and getting back to my normal life. Hahahahahahahahahahahahahaha. So funny. So deranged. So sad.
I won’t keep you in suspense, although the childish side of me thinks if I wait a little longer to spill this bad news, it won’t be entirely real. There is a moment of suspending the two worlds, the wished-upon-a-star-for-best-case-scenario and the hard-core, cold reality of bad news crashing through some already pitifully low reserves of cheer and optimism. That moment before speaking or publishing the reality of the latest bad news is precious, as it allows me to believe for just a moment that in this 50-50 shot, the odds may finally turn out to be in my favor. I’ve had some statistically unlikely things happen (cancer diagnosis at age 40, no family history, post-mastectomy infection), and I’d like to think that the great karma wheel is spinning my way.
But alas, it is not.
The news of my latest pathology report tells me that the giant karma wheel is not only refusing to spin my way, it’s come unhinged and is crashing toward me.
Smoosh me now, great wheel. Just get it over with.
The week began with a needle aspiration and the culturing of fluid to confirm or deny my suspicion that the infection was presenting itself. Dr Spiegel held out hope that these symptoms were just part of the normal healing process after a long, complicated reconstruction surgery. She wasn’t around this past summer for the infection saga.
The pathology confirms that I have a MRSA staph infection. In addition to the mycobacterium that is my ongoing nemesis. If you feel so inclined to learn a bit more about these bugs that make me want to cuss nonstop and invent new ways in which to curse and rant, just click on one of the handy links. If the text is a color other than black in this workspace, you can click it and get all the info you can hold on whatever fascinating topic is at hand. Today the topic is bacteria, followed closely by cussing and sticking one’s head in the oven.
A staph infection is sucky enough, but an MRSA is worse. It’s drug-resistant and hard to treat. The mycobacterium is very drug-positive (like me) and not hard to treat, but hard to kill. It moves slowly and reproduces slowly, so it doesn’t often avail itself to the stream of antibiotics entering its domain every 12 hours. The drugs keep coming, but don’t break through very often. Hence the need for the long-term antibiotic regime. 225 days long and counting. It’s also hard to tell if it’s cured. The best way to tell seems to be stopping the antibiotics and waiting to see if the symptoms appear.
I’m still waiting to hear what my infectious disease team plans to do about this latest development, but suspect it will involve adding either vancomycin or zyvox to my minocycline & bactrim habit.
No, we don’t know where this staph infection came from, if it was contracted during surgery or was already there. I think it was already there. Way back in July, when the post-mastectomy infection hit the fan, before the mycobacterium was diagnosed, many cultures were run. Myco is very hard to diagnose because it’s so slow-growing; it can take 6 weeks to present in a culture. By the time it’s diagnosed, you can be all better or really sick. I was really sick. I did have a staph infection at some point this summer, so it’s possible that this is the same one and it’s been lurking around waiting for a good opportunity to become more of a nuisance. Statistically speaking, it would be crazy rare for one person to have contracted not one but two infections during surgeries, but stranger things have happened. I don’t know enough about infections to know what the relationship is between the staph and the mycobacterium: do they travel together or is one opportunistic, presenting itself when its predecessor has already set up shop?
What I do know is that the new infection is a coagulase-negative piece of junk that not only makes me feel bad physically but also worries me. A lot. I try hard not to borrow trouble and to keep the “what ifs” at bay, but adding a new infection to an already crowded field makes me worry. And the fact that the new infection is creating physical symptoms in my newly created breast is very worrisome. Dr Spiegel spoke on Monday of worst-case scenario being the need for a simple outpatient procedure to excise infected tissue, clean and debride, and stitch it up neatly. She said the biggest downfall there is that it creates another scar.
Uh huh. Yeah. As if I’m worried about another scar. Rand McNally would love a chance to copy the lines and tracks and planes that the scars have created on my chest. Any my belly. And even my poor little belly button. Sweet little belly button was just minding its own business when it was callously sliced off and stitched back on in a new location. Poor baby.
So suffice to say, another scar is the least of my worries. And having been down this road before, I know that there’s nothing simple about excising and debriding infected tissue. Especially when that tissue has already been sliced & diced, carved and stretched and pulled practically into nonexistence.
I really hope I don’t have to do that again.
Last summer, in the heart of the infection mess, I’d had it. I was done. I didn’t think I could take any more. A cancer diagnosis and a bilateral mastectomy 3 weeks later followed by a nosocomial infection was too much. 23 days in the hospital, 3 additional excision surgeries, and more missed opportunities of summer fun and precious memories that I care to recount here.
This latest surgery, the reconstruction, was supposed to be the end of all that. It was supposed to be a symbol, a port in the storm, a beacon of hope. I’m not a big believer in panaceas, but this was supposed to be it for me. One last excision and debridement of the infected tissue, exactly 6.2 liters of antibacterial wash, healthy tissue transplanted from my belly, AND a brand new blood supply, a la microsurgically transplanted blood vessels was supposed to fix all my troubles and get me from victim to survivor.
What a load of hooey.
I’m gonna have to invent some new cuss words.
Haven’t been feeling very bloggy today, which is unusual for me as I’m rarely at a loss for words. The norm is for me to wake up with a blog topic in mind, and I generally have several other topics infiltrate my brain every day as I go about my daily business. Some are interesting, and if the planets are aligned properly, I jot down a note or enter the info in my phone for later, but sometimes I don’t slow down enough and think I’ll remember it all on my own. Ha! That seldom works out for me. Who knows what brilliant blog posts are lost in my grey matter because I was cocky enough to think I could hold that thought in my head while my brain is on overdrive, processing all the medical hoo-ha since surgery.
Of the blog topics that do survive to see the light of day, however, some make the cut, some don’t, and lately the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.
But today the blog muses weren’t speaking to me. I chalked it up to the cabin fever, ennui, and general restlessness that accompany my current house arrest. I’ve been laying low all week (and it has been a long week) for a very specific purpose: to decrease the amount of fluid exiting my body and entering the JP drains so that I can get those damned drains removed.
I’ve had a bit of a history with the drains, going back to the mastectomy, and because I’m a busy-body, my drains’ output tends to be high and they have to stay in longer. I think I had 2 drains for 5 weeks post-mastectomy; can’t remember exactly but it felt like forever, and once they were finally removed, skin was growing around one of them and had actually adhered. Yes, the removal was ugly and painful.
But that’s not why I hate the drains. I can handle the ugliness and the pain. I can handle the discomfort of a rubber tube stitched into my side. I can handle the hole in my body with said rubber tube coming out. I can handle the creepiness of not knowing exactly how far that sucker is threaded through my body. I can handle feeling like a medical freak show when I go in public with said tubes sticking out and snaking from my sides into my sling bag. I can handle the wardrobe challenges presented by needing to cover up yet accommodate and not smoosh, all at the same time. I can handle the draining of them everyday, even though what comes out is nasty and not always liquid (and that’s all I’m going to say about that).
I understand the value and purpose of JP drains. I know that if the drains weren’t sucking the fluid out, it wouldn’t magically go away but would instead pool inside my body and create a seroma. I need a seroma, or any other complication, about as much as I need a hole in the head, as my sweet mama used to say. So I make peace with the drains, even though I curse them under my breath and despise them and rue the day they entered my life. Seriously rueing the day here.
I’m not loving my house arrest. I’m not so good at the “doing nothing” phenomenon that many people seem to embrace. I don’t enjoy this “down time” and I stink at being lazy. I especially don’t enjoy forced laziness. It’s just not for me. I understand and accept it but not happily and I would kick & scream to protest but that’s not very restful.
Day One of House Arrest was easy because by the time I got home from my appointment with Dr Spiegel at the med center, it was almost time for school to be out, and the day was half over. Day Two passed uneventfully; I watched a movie but don’t even remember now what it was. By evening, I was starting to get cabin fever but managed not to bitch about it too much. Day Three of House Arrest seemed longer than Day Two, but I watched another movie that was worth mentioning, and I may even have to write a review of; if you can’t wait for that, the movie is City Island with Andy Garcia and Juliana Margulies. It’s good. Really good.
The highlight of Day Four of House Arrest was the arrival of Melanie and little Luke of the million-watt smile. Melanie is kind enough to bring me a big cup of Green Drink and to blowdry and flat-iron my hair, since I’m still not supposed to lift my arms that much. We had a great visit and there’s a lot to be said for having clean hair, but there’s something kinda sad about the highlight of the day being over by 10 a.m. Sigh.
I’ve discovered that sitting in front of the computer can be a gigantic time-suck. Who knew? I usually sit at the computer (and “sit” may be stretching it, since I tend to perch on one corner of the desk chair, all the better to jump out of it fast and move on to the next task) briefly. I’ve never been one to spend all day in front of the computer. I don’t really enjoy reading from the screen (yet I love my kindle, so way to go, kindle creators). I’m not a gamer, either, so I don’t lose myself in the online gaming world. I thought about taking up online gambling, but I like to shop too much to throw my money away, so that’s not going to happen.
I do get a lot of info from various breast cancer organizations, and I usually skim the bevy of emails in my inbox on the topic, deleting more often than fully perusing. This one caught my eye, though, both because I have time on my hands to notice it, and because it seems so insistent and urgent. This one email contains multiple links, each one clamoring for more attention than the next:
Don’t Restrict Access To Mammograms!
Help Women With Breast Cancer by Covering Their Medical Bills!
Support Breast Cancer Genetic Marker Testing!
On Sale: Pink Ribbon Water Bottle!
Stop Canceling Women’s Policies!
Fund Women’s Exams in Remote Guyana!
Also a lot of urging me to tell Secretary of Health & Human Services Kathleen Sebelius what I think and which programs she should and should not endorse.
I’m not making this up. Even in the midst of my wealth of free time, I couldn’t make this up. The email is from a group called Greater Good Network! No idea who they are or how they got ahold of me, but I do know this: they use a lot of exclamation marks. Yes! They do! A lot!
That makes me tired. The forced excitement! And the wide range of serious health issues! And the political ramifications! I’m going to have to unsubscribe from their distribution list. Reading one email made me tired. Wonder if I have time for a nap.
There once was a post about gratitude. About feeling it and showing it to someone who had done something that changed my life. About how I struggled to say thank you for helping me, for making things better. About how I wished there was a Hallmark card that says, “Hey, thanks a lot for saving my life.” Absent such a card, I don’t think I effectively conveyed that sentiment, but I tried, and as we all know, it’s the thought that counts.
This post is not about gratitude. It’s not about feeling or showing thankfulness. It’s about a whole ‘nother set of feelings, and there most definitely is not a Hallmark card for them. It’s about feeling betrayed and scared and frustrated and hopeless. And helpless. Lots of helplessness in there. Sounds like a great basis for a Lifetime movie, right?
I’m feeling all of these nasty things, and more. In addition to the emotional stew, I’m also feeling sick to my stomach. For real. As in, any second I may barf. Now, that particular sensation is one I’m very familiar with, and no, not because of all the heavy drinking I’ve done in my lifetime (close, but not quite). It’s because of the dynamic duo of oral antibiotics I’ve been taking for 221 days. Two hundred and twenty-one days. CCXXI days. So let’s just say I’m used to the all-day morning sickness, the pukey-all-the-time drudge that is life on long-term, hard-core abx.
Add to the stew and the roiling stomach the sleepless night that now has me feeling like a zombie on a bad day after a monstrously long night of searching for solace but finding none. That feeling of bone-weariness coupled with worry so palpable you can smell it. And taste it. Which does not mix well with the roiling stomach.
If I weren’t so tired and puny and upset, I would be mad. Really mad. But I’m not. It would be very easy to be defeated, to give up and stop fighting. To roll over and concede. That is very tempting right now. And I’m not one with a lot of willpower. Brute force, yes, but willpower not so much.
I don’t do any of those things well: the giving up, the acquiescing, the rolling over or the conceding. I’m not super competitive, at least not against others, but I really stink at those things. I have no desire to keep up with the Joneses or be the leader of the pack. I don’t need the latest and greatest gadget, the biggest house, the newest car. I like nice things, but they don’t drive me. I have a lot of pride, and it’s hard for me to say things like “you win” and “I was wrong” and “I thought I could do this but I can’t.” I’m much better at writing those ideas than expressing them out loud. Hence this blog.
As I struggle to process all the feelings coming at me this morning, and fighting through the fog that fills my brain and slows down my body, and going through the motions of the early-morning routine, one thought sticks out and gathers my attention: everything was going so well; at the start of week 3, I should be able to do more, to reclaim more. And the fact that I can’t makes me heartsick and nauseated and wish I could curl up in a little ball until it passes. I want my mama, but she’s gone, and I can’t conjure her up right now. I’m stretching and reaching to remember her voice, but all I’m hearing is static.
I’ve probably mentioned before that I’m driven. I like results and achievements and progress. I make a to-do list every day and attack it. I believe wholeheartedly in the principle of do the work first then with whatever time is left, play. I don’t idle well and have a hard time doing nothing. I need goals and milestones.
I should be reaching a milestone as I enter week 3 of recovery from a major surgery. Some progress has indeed been made: improved range of motion, increased mobility, and less pain. What I shouldn’t be encountering is a set-back. At the risk of sounding a little whiney, haven’t I had enough set-backs?
Something is going on with the right side of my body, and I don’t like it. I’m mad at my body. It has betrayed me, and it’s frustrating me and worst of all, it’s scaring me. The drain on my right hip hasn’t been working well since I got home from the hospital. It has leaked and collected considerably less fluid than its counterpart on the left. A theory was floated that the disparity between the two drains’ fluid collection could be because righty isn’t pulling its weight so lefty is taking up the slack. I like the other theory better: that lefty is threaded deeper into my body, which allows it to pull more, and righty is doing exactly what it needs to be doing for its location.
Regardless of theory, the fact is something isn’t right, both with the drain and the newly created breast. The right one had a divot on Thursday, that was deemed by the authority figures to be no big deal, part of the process. But now the skin all around the divot in an ever-widening area is hard. And sore. To the point that taking a deep breath is uncomfortable.
This is the thing about recovery that is so treacherous. It’s unpredictable and anything can happen. Things can be going well by all accounts and suddenly, out of nowhere, there’s a problem. One minute you blow a tire, and the next you’re careening over the cliff.
I hate careening.