Medical musings

If not for the priceless blog fodder, I’d be pretty steamed after my visit to my dermatologist yesterday. I’m ever so grateful for my sense of humor, especially after last week’s doctor’s appointment on a day that went from bad to worse to are you freakin’ kidding me??

My dermatologist is lucky I have this little blog as my outlet for all the things I’m compelled to rant about, to rail against, to bitch & moan about in general.

A little background: she’s a fantastic doctor. She embodies many of the traits I’ve come to appreciate and insist upon while spending time in an exam room. She’s punctual, no-nonsense, very thorough, and more than ready with the prescription pad. Her office is staffed by all women, with nary a male doc in sight, which thrills me to my feminist bones.

She is, however, not going to win a prize for compassionate bedside manner. She is not the most compassionate doctor I’ve ever met, and this was on full display yesterday.

Perhaps it’s my bad for scheduling a first-thing-Monday-morning appointment. Maybe she had not had her RDA of caffeine. It’s possible that her personality pills had yet to kick in at that early hour. Whatever the reason, she didn’t waste any time with pleasantries. I’m cool with that, and as much as I enjoy having a comfy relationship with my health-care practitioners (especially those who see me naked), I’m good with the all-business appointment that gets me out of there and on with my life.

I sat on the paper-covered exam table in my thin paper gown precariously close to shivering — yes, people, a temperature of 52 degrees in South Texas does count as c-o-l-d, and I’m aware of the fact that 52 degrees could be considered a heat wave in some parts of the country at this time of year. I was awaiting my doctor to come in and do my annual mole check. Because I had melanoma several years ago, I take my mole checks very seriously, and as much as I hate stripping down to have every inch of my flesh examined, it’s a necessary evil and one I never skip out on.

My melanoma showed up on the inside of my right foot, on perhaps the one and only body part without any excess flesh. A number of specialists were consulted on how best to excise the infested tissue in such a delicate area. Opening the area and excising the melanoma weren’t the problem, but closing the incision was. Little did I know that that experience would be the first of many “think of the most complicated scenario” scenarios in which I would find myself. Post-mastectomy mycobacterium, anyone? In case you’re wondering, the solution to the flesh-less foot melanoma was Mohs surgery in which the surgeon used a zig-zag shaped incision to allow him to close that incision with limited flesh upon which to draw together. I have a now-faded zig-zag scar that predates Harry Potter’s lightning bolt on his forehead. I had a lightning bolt scar before lightning bolt scars were cool.

Anyhoo, back to my terse and not-so-warm-and-fuzzy dermatologist. The first thing she said when she walked into the exam room was, “What are you doing about your rosacea?”

Um, I didn’t know I had rosacea. My face gets red when I exercise and when it’s cold outside — and again, 52 degrees does count as cold — but I certainly have never had the bright red spots that I associate with rosacea. Great, now I’m feeling self-conscious.

I asked her what she thinks I should do about my rosacea (and I want extra credit for not asking it in a smart-assy way; I mean, she is the doctor, after all). She shrugged and said there aren’t any creams on the market that really help, although there are a couple in FDA testing that should be available in a few years. Meanwhile, she thinks I should go for several laser treatments, which start at $600. Out of pocket, I’m sure. She suggested that I figure out what my triggers are and avoid them. Since she didn’t go into any detail on the common triggers, I looked them up myself and found that they include stress (not gonna get away from that one anytime soon), spicy food (I do like my jalapenos and Frank’s Hot Sauce; I put that beep on everything!), hot beverages (I’m a two-cup-a-day coffee girl), sun exposure (did I mention I live in South Texas?), exertion in hot weather (again, South Texas), oral antibiotics (so I’m guessing that 267 days of two different oral abx would factor in here), and drumroll please…the last trigger for rosacea is…alcoholic beverages.

Ok, I’m out. I’ll just have to figure out a way to live with my extra-rosy cheeks because every item on the list is a factor, but the last one is a deal-breaker.

Moving along, she examined me and made notes of the normal-looking moles scattered here & there on my body. Because of being inducted into the pink ribbon club, I’ve spent plenty of time mostly naked in doctors’ offices. I’ve had my flesh poked & prodded and examined quite intently enough times that I don’t even think twice about it; in fact, I got so used to the weekly follow-up exams after the mastectomy, the multiple surgeries to rid my chest wall of the mycobacterium, and then the Big Dig reconstruction that it seemed weird to not take off my clothes at the doctor’s office.

However, none of my previous time spent in my birthday suit with a doctor prepared me for her question: Why did you have a mastectomy?

Ummmmm, because I had breast cancer?

Why else do women undergo such a physically and emotionally taxing surgery? What kind of question is that???

I wondered for a sec if I’d heard her right, then answered “Ummmmm, because I had breast cancer.”

She then wanted to know why I had a bilateral mastectomy; was the cancer in both breasts? I replied no, at least not that was detected by the multiple mammograms, bone scan, or PET scan, but that was the right decision for me. Once I heard I had breast cancer, I took a slash-and-burn approach. Good thing, too, because my post-mastectomy pathology showed a large and scary smattering of micro-mets that were likely just waiting to organize into a full-blown tumor, with a bonus of Paget Disease to boot.

She complimented my reconstruction and said it looks good, that they see a lot of it, and mine is better than most. I replied that I was very fortunate to have such skilled surgeons, yadda yadda. It never seems like the right time to mention that while my surgeons did an incredible job with my reconstruction (especially considering how wrecked my right chest wall was after the infection), it’s still reconstruction, and I was perfectly happy with my breast before I had to have them chopped off and rebuilt using another body part. It never seems appropriate to talk about how the reconstruction restored some mass to my previously scooped-out chest, but it’s not the same and will never be the same as it was before. I never feel as if the conversation will meander toward the topic of how no matter how skillful the reconstruction, there’s no way to escape the constant and visual reminder that I had cancer. I’ve yet to find a way to say that the myth of getting new boobs after breast cancer is just that, a myth. Yes, they’re new, but they’re not really boobs. I can’t ever figure out how to say that while I’m very grateful to have had access to the best docs in one of the best medical facilities in the world, and yet my reconstruction still leaves me feeling less viable. It’s certainly not considered polite chit-chat to recount how grueling the DIEP surgery is, how precarious the transplanted blood vessels are, how unbearably uncomfortable it was to be in the ICU with heaters blowing to warm those blood vessels, or how the stress of flap-failure can bring on some serious PTSD.

All that from a sincere compliment about my reconstruction. Sheesh, what a head case I’ve become.

Just as I was talking myself down from the myriad ledges my brain landed on and working hard to get back to the present moment, which was a simple mole check, my dermatologist asked another question: Where did they get the flap from for my DIEP? From my belly, I replied, and braced myself for the inevitable comment about how nice it must be to get a “free” tummy tuck. Before she could utter that platitude, I launched into a distrationary tale about how I had to gain weight to create enough belly fat to make a good flap; ha ha ha, I said, it was so funny that I had plenty of fat in my hips & thighs but not in my belly. As I lay on my belly and she examined my back, she asked why they didn’t take it from my back (because apparently there was plenty available, and she was staring right at it). Well, because I didn’t want to lose my tennis serve, I said, resisting the urge to ask for a mirror so I could see just how fat my back is.

The coup de grace, though, came when she said how lots of people probably envied me having to gain weight for the surgery, and then delivered the final crushing blow to my already-battered ego by saying, I guess you’re still working on losing that weight, huh?

Yep. Still working on it.

And I’ll keep working on it. Right after I find a new dermatologist.

I wonder if this guy is still in practice.


The last installment

There’s a line in the movie Ice Age–during the fight between the dodo birds, Sid, and Manny over some melons–that applies here. The animals are scrambling to scoop up the melons, which are in short supply, and their bumbling leads to the melons being misappropriated. Sid the sloth gets the final melon but drops it when he’s swarmed by dodos. Manny grabs the melon with his trunk, but loses it when a dodo bites his tail. He throws the melon into the air and the dodos make a final play for it, but Sid catches it and the dodos fall over themselves, exclaiming, “The laaaaast melon.”

What does this have to do with the price of tea in China? Be patient, I’m getting to it.

Just like the laaaaaast melon, this is the last installment in the northern Louisiana series. Our trip last week has provided such good blog fodder, like this post about the trip itself and this post about puttin’ up corn and this post about skeet-shooting and this post about the best practical joke in a long time, maybe ever.

This wrap-up features a FEMA trailer, my favorite girl acquiring a new skill, yet another cute dog, a slave grave, and wisdom gained from the country. To say that this trip was a huge departure from the everyday minutia of my normal life — kids, pets, suburbia, and searching for the new normal after breast cancer — would be quite the understatement.

The FEMA trailer sits behind Mama & Papa’s house. Bought at an auction after its displaced residents no longer needed it, the outside looks what I imagine it looked like while being used as temporary housing after Hurricane Katrina demolished New Orleans in August 2005. The inside, however, has been outfitted with some custom woodwork and a few of Papa’s special touches to create a mighty fine fishin’ trailer. In fact, on the table is Papa’s computer-generated shopping list of supplies he’ll need for the next fishing trip. 

The last of the 145,000 FEMA trailers used to house displaced people in Louisiana and Mississippi after Katrina was recently removed from New Orleans. Many of the trailers were sold by FEMA at auctions, and some were used to house workers assigned to clean up the Deepwater Horizon/BP mess in April of last year. After housing some 770,000 newly homeless who were displaced after Katrina destroyed 75 percent of housing units in New Orleans, the trailers have been snapped up by outdoorsy folks who need a place to hang their hat after a long day fishing or hunting. 

It was cool to see this piece of history. FEMA trailers were such a ubiquitous part of the storm, and will remain a symbol of the size and scale of the damage Katrina inflicted. Living along the Gulf Coast myself makes me patently aware of the power and fury of hurricanes, and Katrina was a doozy.

On a much lighter note–Macy’s new skill. My favorite girl learned how to drive a 4-wheeler. All by herself. As ubiquitous as FEMA trailers were in NOLA, 4-wheelers were everywhere we went, and at age 10 my girl was a bit long in the tooth to be just learning. That’s what you get as a city-slicker, however.

Macy wasted no time in learning, and did well for a city girl. With Molly the dog leading the way, Macy explored the trail that winds through our hosts’ property. Wish y’all could have seen her face as she had her lesson from Amy. It was a curious mix of wonder, excitement, concentration, and reverence all stirred together. Like the complex and many-faceted girl she is, I suppose. A lot of kids would take that 4-wheeler and gun it, tearing all around the property, but this girl was careful and methodical about driving. I hope that’s the case when she turns 16!

Another cute dog was on hand, bringing the total of new furry friends to at least 7. We met this little charmer at Gina’s house as we sipped a glass of wine by the pool before dinner. She belongs to a neighbor but comes to Gina’s to visit. No bigger than a minute and so meek she crawled on her belly to greet us, I couldn’t resist pulling her into my lap. Her name is Jill, but the charming northern Louisiana pronunciation is “G-eeeeeel.” She reminded us so much of our sweet doggie friend Lima. Perhaps they’re distant cousins.

It was also at Gina’s that we saw the slave grave and expounded on the story of Josephine. On one of the many nights Amy stayed with me in the hospital during my countless hospitalizations thanks to mess that is cancer, she told me the story of Josephine, and it was amazing to be on her turf after hearing so much about her. 

Listening to Amy tell me about Josephine while I endured yet another night on scratchy hospital sheets fighting that dadgum post-mastectomy infection was a memorable escape during a time of hardship. It’s the story of a young girl who lived and worked on the Shelton Plantation in the mid-1800s, which is now the site of Gina’s beautiful home and acres of beautiful woods. It’s believed that Josephine’s father was the plantation owner and her mother was a slave. Deep in the woods lies this grave marker. It’s a simple yet beautiful grave marker, and an interesting piece of the past. Coming across the grave site in the woods was a profound experience that reminded me that life is fragile and fleeting. This girl was just 19 and a half when she died–curiously enough, at the same age as Amy’s brother, Sam, who is also buried on Gina’s property. The family decided in the wake of Sam’s tragic death to officially designate a portion of Gina’s land as a family cemetery. It’s a beautiful and serene patch of woods that invites lingering, contemplating, and remembering. My mom’s gravesite is the last place I’d go to feel close to her, and to me the conventional cemetery does precious little to invoke a sense of connectedness to the departed one. If she were laid to rest in a beautiful and sacred spot like this, however, it would be a different story, and I can imagine sitting under the tall trees and talking to my sweet mama like we used to do every single day.

I’ve heard a lot about Sam and know by the way his sisters speak of him that he was someone special. Losing someone you love is hard, hard, hard to take, and when that someone is young and killed unexpectedly like Sam was, the tragedy is especially long-legged. I’ve learned on my own that grief is a heavy and long-lasting thing, and I felt that lesson keenly while in the woods the other day. In A Prayer for Owen Meany, one of my all-time favorite books, John Irving writes:

“When someone you love dies, and you’re not expecting it, you don’t lose her all at once; you lose her in pieces over a long time — the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers.”

I know this must be true of Sam, too. It was a privilege to be present in this lovely place, and the feeling of being there will stay with me.

The woods seem never-ending, and the blanket of trees served as a rugged and insular backdrop as I contemplated Josephine and felt the absence of Sam in this close-knit family. I never got tired of looking at the woods. My favorite girl kept saying, “The trees go on for days!” Indeed they do. 

I learned from this quick trip is that it’s good to get out of town and savor the purity and goodness of the country. Oscar Wilde wrote in The Picture of Dorian Gray that “anyone can be good in the country.” What a fantastic thought! As if the fresh air, wide open spaces, and relaxed pace in the country aren’t enough! Spending time with a family that truly and genuinely loves and treasures each other is a beautiful thing; being enveloped by such a family is an honor. I’ve always wished for a sister, and after being around Amy and hers, now I really wish I had one.

More wisdom was to be gained from the framed saying that Mama has hanging in her house:

And then some more from the napkin displayed under a magnet in Papa’s shop: 

 


The circus may be gone, but the big top remains

Saw Surgeon #2 last week about the next step in revising The Big Dig. Didn’t want to talk about it or blog about it at the time. I’m not sure why, but I suspect it has to do with Surgeon #2’s comment about me having “been to hell and back.”

Part of me thinks it should be very gratifying to hear Surgeon #2 say that. After all, I respect her immensely, and it’s quite validating to hear someone I think highly of say that I made it through a seriously trying time, and that I made it with flying colors. If there were a report card for cancer/infection/surgery progress, I think I’d have straight A’s.

No such report card exists, however, and a 4.0 in this particular course-load is meaningless. There is no honor roll in the ranks of survivors. Instead of a gold star, I have some big-time scars across my chest and belly. I’ve gained a few hard-won wrinkles etched in my furrowed brow, too, from the worry that accompanies a cancer diagnosis, a post-mastectomy infection, 267 days of oral antibiotics, and major surgery followed by not one, not two, but multiple revisions. There’s no end in sight to this circus. The fairgrounds are quiet, but the circus tent remains. The bearded lady has gone home, and the trapeze artists have ambled along, too. The wild animals are safely ensconced in their cages, and the carnival rides are dormant. The circus, however, lives on. It seems there is no end to the drama and three-ring craziness that is life after breast cancer. I hold out hope that at some point the circus will vanish in the night, and I will awake to find sawdust, peanut shells, and the faint smell of adrenaline and cotton candy. But alas, the big top remains.

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I saw Surgeon #2 last week to get her opinion on the next step on this cancer “journey.” Like a traveling circus steaming toward the next town, the cancer “journey” chugs along. I sought Surgeon #2’s expert opinion on the next phase of this “journey.” After The Big Dig and subsequent revisions to perfect what is essentially an imperfect canvas, I needed to hear her say “do this” or “don’t do that.” I needed to know whether there’s any point to pursuing yet another tweak to my restored chest.

Surgeon #2 was her usual cheery, to-the-point self. She says I’m “almost there” in the relentless pursuit of normalcy — at least on the physical side — after breast cancer and reconstruction. That’s the tactful way of saying “We can do a little more, but it’s never going to be perfect so we’re getting close to the time in which you start to accept it.”

I don’t want to accept it.

I’m still hanging onto the myth — albeit cruel and deceptive — that one can have nice boobs again after cancer. Public Service Announcement #852 from this little blog: If you hear someone say, “Bummer about the breast cancer, but at least you get new boobs,” be aware: the new boobs may not be something you actually want.

I’m still not ready to accept that ugly truth.

Surgeon #2 concluded my consultation with a little look-see at an 8 1/2 x 11 inch photo of myself pre-reconstruction. I don’t remember posing for that picture, as there have been several photo shoots associated with this cancer “journey,” but there it was, on the inside cover of my file. Surgeon #2 flashed that full-sized photo of me, with one tidy mastectomy scar on the left and one not-so-tidy scar on the right. The right side, a mess of multiple scars and tissue excisions necessitated by the nosocomial infection. I hadn’t seen or thought about that scene in many moons. I recognized the train wreck on what was formerly known as my right breast. I recognized the God-awful blue paper panties required for plastic surgery photos. I recognized my former belly button, so normal and non-Frankenstein-looking. I recognized the flabby belly that I was required to acquire so that the DIEP surgery — my only reconstruction option — could occur. That belly was flabby, but it was unblemished and absent was the 17-inch incision from hip to hip that has mellowed but will forever be a stark reminder of what the king’s horses and the king’s men did in an effort to put Humpty Dumpty back together again.

While I hadn’t seen that photo in nearly two years, I recognized every aspect of it. However, when Surgeon #2 said, “You’ve been to hell and back,” I couldn’t conjure up the specifics I expected to feel about that dark period in my cancer history. In fact, hearing her say “You’ve been to hell and back” was startling. I didn’t expect it. I didn’t know how to react to it. And days later, I still don’t know how to react to it.

I suppose I should have felt some pride and/or satisfaction at having endured that trip down the “If anything can go wrong, it will” scenario. Perhaps I should have felt a sense of accomplishment at having survived that arduous trip down the rabbit hole. I guess I should have felt happiness at having come out on the other side of such a hellish situation. But I didn’t.

Instead, I felt as if I were watching myself in a movie. I remember being there, of course, and I remember that all that happened to me. But I can’t conjure up the specific feel of the experience. I can’t visualize the ins and outs of that particular “journey.” I see myself, my physical body, in that full-size, color photo (which is not at all flattering, by the way), but it doesn’t seem like me. I see that former body through a myopic lens. The rational side of my brain knows it did indeed happen to me, but the protective side of my brain has shielded me from calling it up, in all its ugliness. Like the flash of lightning in the night sky of a summer storm, or the sharp but fleeting heat of a jalapeno pepper on the tongue, I know it’s there but once it’s gone it’s gone. For that I should be grateful.

But I’m not grateful.

I’m sad.

Really sad.

And really mad.

Maybe it’s too soon to feel triumph over the wily infection that wreaked untold havoc on my weary body. Perhaps the time is not right to celebrate how far I’ve come. Maybe I’m simply not one to say, “That was rough, but I got through it.” Apparently it’s a long way from beginning to end, if there ever is an end, and I’m not there yet. While it’s been almost exactly two years since I bid adieu to my cancer-riddled breasts, that’s not enough time to process the enormity of all that’s transpired over the last 728 days. If it were a linear path from diagnosis to mastectomy to psychological recovery, I might be in a position to expect some change, some healing, some progress to have occurred. But I was busy processing that nasty infection instead of dealing with the weight of cancer at age 40, so the change, the healing, the progress remains at a standstill.

The big top remains.

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Fever-free, finally?

Yesterday was the first day since my surgery–exactly one week ago–that I didn’t have a fever for most of the day. I wasn’t exactly fever-free, as my temp peaked at bedtime, but that’s the best it’s been for one very long week, so I’m claiming it. After coming this close to needing IV antibiotics — again — I’m beyond thrilled to have been (mostly) fever-free yesterday. I’m guessing that the docs in my life would laugh a little, shake their heads, and maybe massage their temples a bit at me claiming yesterday as fever-free. I’m guessing my friends in the white coats would consider my being almost fever-free akin to being a little bit pregnant–it’s an all-or-nothing condition. That’s fine. They can chuckle and shake their heads at me, I’m still claiming it as a victory.

See, fever can indicate infection, and after my surgery last week, the fear of recurrent or new infection abounded. That fear was thick in the OR and it was pervasive in the days after surgery as we waited to see what would happen. It’s still lingering, in the back of my mind and on the fringes of my daily activities. I’m not a big fan of that loss of control. We did increase my course of oral antibiotics — both in duration of course and milligrams per dose. The usual suspects in the roster of awful side effects are back, but that tells me the abx are working. If there was a niggling infection trying to re-establish itself, the mounds of abx I’ve been taking for the last 7 days have contained it. I’m almost afraid to say this out loud, but I think I’m out of the woods.maria pace-wynters

Can it be? Like the joyous girl in the gorgeous Maria Pace-Wynters art, coincidentally titled “Out of the Woods,” I want to smile big and enjoy the view of the woods from the other side. I want to feel the relief that washes over me as I realize that the 6-day fever has broken, the pain & redness & swelling in the original infection site have abated, and I may be able to breathe easily now.

My infection-induced PTSD makes me wonder if I really can believe that the tide is turning, that I may be out of the woods. It’s been a long, long haul. A super-long haul. Reflecting back on the havoc that the post-mastectomy infection has wrought makes me very uncomfortable. I’m not yet in that happy place, and the calamity is not far enough in the rear-view mirror yet. Instead of feeling enormous pride, accomplishment, gratitude and general kick-ass-itude that it’s over, I’m gun-shy and untrusting.

This time last year, I was fresh out of the hospital, having just served day 27 of intermittent, back & forth hospital stays and at-home IV antibiotics. The last hospital stay to treat the infection was at Methodist in the Med Center, so I’d served time in 3 different hospitals–Memorial Hermann Southwest, Methodist Sugar Land, and Methodist Med Center–which allowed me to sample Houston’s best. I recall the direct-admit to the Med Center for the last stay, late on a Sunday night just before school started. Sweet Dr S had handled the details for me so I had a “fast pass” to get admitted quick, which allowed me to circumvent the circus that is a Med Center ER on a weekend night. Dr S and I were texting back & forth during the speedier-yet-still-complicated process so he would know that I was in the room before he had to get up and leave his family to come see me and get all of our ducks in a row.

I remember being furious about having to go back into the hospital. At that point last year, I’d been on antibiotics all summer, oral and IV, in every imaginable combination. Biaxin. Cipro. Minocycline. Zyvox. Vancomycin. Cefapim. Doxcycline. Bactrim.Vancanese. Levaquin. We were on the cusp of finding the magic bullets that would target the slow-growing and slow-to-kill infection (Bactrim & Minocycline), but it would take time to decimate the wily bacteria, so the infection still had the upper hand. As I settled into my room after navigating the maze that is Methodist Med Center, I was completely and utterly pissed at the ugly-ass artwork in my room. The shoddy impressionist landscape was hideous, the colors were barf-inducing, and the mere site of it reminded me that I was once again a prisoner — of my failing body and of yet another hospital. I couldn’t avoid that uproariously unpleasing “artwork” because it was in my face and I had nowhere to go to avoid it. That framed print became a symbol, a poster-child if you will, for all that had gone wrong last summer, and I was stuck staring at it. If I hadn’t been so ticked and so upset, I would have taken a picture of that “artwork,” and one day it will make me laugh instead of making me want to punch someone. But not yet.

Here’s what I wrote upon settling into that room; note the frustration surrounding the words that described the room but actually meant a whole lot more:

So I got through the masses in the ER pretty quickly and got into my room and thought, yuck, this place is a dump compared to my lovely one-bedroom suite at Methodist Sugar Land. Call me a snob, but I like those hardwood floors and new, unchipped paint. I don’t really need the laminated sign on the wall here reminding me not to leave my dentures on my lunch tray. The view out my dirty window is of a wall, with patient rooms too far away to spy into [one of my pastimes at Methodist Sugar Land]. The chair I’m sitting in to type this is vinyl, and there is a lovely faux-cherry-wood desk with ornate colonial drawer pulls. I could sit there, but the desk chair is super scratched with dingy upholstery on the seat cover. And don’t even get me started on the artwork on the wall across from the 20-year-old bed covered in ultra-scratchy sheets. No wonder people get sick in hospitals. It’s from the decor as much as the bacteria.

I was one unhappy girl.

I was coming to terms with the fact that the infection superseded the cancer in every way. For a while, that was a good thing — being so focused on the infection kept me from thinking about the fact that I was a 41-year-old mother of 2 young kids battling cancer. The cancer was easy compared to the infection. While a cancer diagnosis is one of the scariest things ever, the treatment for and eradication of that cancer was, for me, much more logical and linear than the infection. The cancer left me flat-chested, but once the tumors were removed and the lymph nodes declared clear, it was done. My game plan was defined: a 5-year course of Tamoxifen for adjuvant therapy along with hormone suppression to snuff the cancer’s fuel. The cancer battle was over and the treatment had begun, but the infection war hadn’t even revved up yet. Little did I know that more than a year later, I’d still be fighting that war, and that sometimes the infection would gain ground and force me to retreat.

The infection left me with a hole in my newly flat chest — literally. The excised tissue created a wound that measured 5.6 cm long and 3 cm wide. Grab yourself a ruler and feast your eyes on those dimensions. That bad boy took 8 weeks to heal, almost double the healing time required by my bilateral mastectomy. I’d faced my diagnosis, done my research, made the hard decisions, endured the systematic removal of both breasts, and was still standing. The infection, however, was a whole ‘nother ball game. There was no logic and nothing was linear — it was a guessing game. Educated guesses by a crack team of infectious disease docs, but a guessing game nonetheless. Will this combo of antibiotics work? How long will I need to stay on them? How will we know if they’re working? What are the side-effects of long-term abx therapy? Will I ever get my normal life back? The questions were many, the answers were few. I wrote this after one particularly frustrating day in the infection war:

All this talk you hear about being a pro-active patient, being your own advocate, researching and digging up as much info as you can and thinking for yourself — forget it. Today is one of those days that makes me wish I was a sheep. I just want to follow along and do what I was told. Except I can’t. It’s not how I’m made. So I continue to ask questions and solicit advice, all the while feeling like I don’t have all the puzzle pieces. Sometimes there are a few pieces missing, or you have to wait a while for them to fall into place. You can’t force it, although I want to. I am impatient and a forcer. An impatient forcer.

And I’m still waiting for the pieces to fall into place.

Meanwhile, I will feast my eyes on another gorgeous piece from Maria Pace-Wynters’s collection. This one is titled “Unseen Beauty,” and my eyes are open.


I’m trying really hard…

I’m trying really hard not to be discouraged by the latest bevy of bad news. Picture me squeezing my eyes shut as tight as they will go, turning a bit red in the face, and willing it to happen. Don’t. Get. Discouraged. Having my surgery postponed and being smacked in the face with the idea of another post-surgery infection is not my idea of fun. Being told we need to keep the port that I’ve been so looking forward to having removed was equally not fun. I’d actually begun counting the days until saying adios to the port. It’s served me well, but I’m so so so ready for it to be gone. I could almost imagine sleeping comfortably on my left side again, with no kink in the line that’s sewn into my jugular vein. I could picture myself in a sundress, sans the alien-looking bump with prongs under my skin. But alas, it’s not to be. Once again, the hits keep coming, and I have to suck it up and deal.

I’m trying really hard. So hard that I just wrote a beautiful post, if I do say so myself, about the effort. The words were flowing and I was thinking, “This is going to be good.” Then promptly lost it. All of it. Instead of “save” I hit “cancel.” And with one keystroke, it’s gone. I will attempt to recreate, but already know it won’t be as good.

I’m trying really hard to remember that while yes, being diagnosed with cancer–at a young-ish age no less–is bad, plenty of women have it worse than me. There are lots of rarer, more-aggressive forms of breast cancer than mine, and the battles are many. While my recurrence odds are low, the mere fact that I have odds reminds me in a terrifyingly real way that there’s always a chance that it will come back. As another fellow cancer chick so eloquently put it: “It’s losing your innocence all at once, rather than in bits and pieces over a lifetime.” Being diagnosed with cancer at a young-ish age is bad enough; fearing recurrence is even worse. Then you factor in all the other junk that comes with it, and before long it’s like inviting one person to a party and having them bring a village of savages with them. They drink all the good booze, hork down the delicate hors d’oeuvres, manipulate the conversation, interrupt with Buddy-the-Elf-esque burps, wipe their dirty mitts on the pretty towels in the guest bathroom, spill red wine on the beige carpet, and change the tinkling background music to heavy-metal hair bands. The cancer crew is most unwelcome. And yet they overstay their welcome in myriad ways.

I’m trying really hard to not freak out as the possibility of infection scares the tar out of me. There’s a kindly gatekeeper in my brain that shields me from the harsh memories of the battle royale that occurred last summer between my war-torn, ravaged body and mycobaterium fortuitum. While of course I remember being there and going through that, it’s as if I’m watching a movie of myself enduring that hell. It’s a gauzy, soft light, much like the lens filmmakers use to shoot a scene with an aging star. The gatekeeper that usually protects me from windexing the lens to see it unfold clearly, in all its replayed gore, is off duty. What I want to do it pack up all those horrible memories of the events last summer and put them in a box and leave them on the side of a deserted highway. Then I want to put the pedal to the metal, burn rubber, and beat feet away from them, without even once glancing in the rearview mirror. I want to find myself on a pastoral country road, with tall, leafy trees and big puffy clouds–somewhere far, far away from any hint of cancer or infection.

I’m trying really hard to be calm and not freak out about the possibility of infection. Of course I know that anytime one goes under the knife, the chance of infection is there. But rather than a distant “maybe,” infection is a real thing for me, and I have a visceral reaction to the idea of going through that again. And while the preventative antibiotics are just that — preventative — I find myself with real fear instead of comfort. The prophylactic effect should make me feel better, but instead I feel worse. There is a very fragile peace that was brokered between my body and the bacterium, and peace without the threat of war is meaningless.

I’m trying really hard to not gag on the antibiotics.  I dutifully swallow the two pills that are my front-line defense against the wily bacterium that may want to  set up shop again. Those bacterium were evicted after their long, comfy stay in my concave chest wall, and they may well want to reestablish their presence. So I swallow the pills, knowing full well that soon, very soon, I will feel like utter hell. The all-day nausea, the roiling queasiness, the lost tastebuds, and the sore throat that were my constant companions for 267 days are making a return visit. Back by not-at-all-popular demand is the diligence required in spacing the drugs 12 hours apart, and the taking them on a stomach empty enough to allow them to do their thing but not so empty as to make me puke. Instead of feeling comforted by the preventative drugs, I’m scared.

I’m trying really hard to think happy thoughts. Right now I’m remembering a highlight of our recent vacation, in which we were all in the ocean battling giant waves as the tide turned. These were seriously bitchin’ waves, a good 8-feet tall, and we were in the thick of them. I was ecstatic that the water was warm enough for me, a Gulf Coast chicken; that the waves were so accommodating for body surfing and frolicking; and most importantly that I was there to experience it. As I came up from being tumbled ass-over-tea-kettle by a giant wave, Macy overheard me say that that wave just bitch-slapped me. She misheard me, though, and thought I said that the wave had “fish-slapped” me, and she wanted to know if it was a flounder, because they tend to be especially evil. I’m gonna smile at the idea of being fish-slapped, even though I feel like crying instead.

I’m trying really hard to focus on how far I’ve come instead of how many setbacks I’ve had. The race is long, yet I’ve continued to put one foot in front of the other. Keep on keepin’ on. Several people have tried to help along the way by telling me that God only gives us what we can handle, and that he must think I can handle a lot. Thanks, but zip it. I don’t believe it, and I’m not comforted by that. While there are a host of helpers along the way, there’s only one person involved in this battle, and that’s me. No one is doling out the hard knocks in an insane game of “let’s see if this will make her crack.” It’s random, it’s uncontrollable, and it’s life. It’s life, and my job is to keep on truckin.

I’m trying hard to remember that this is temporary. As my wise survivor sister Jenny reminded me countless times during diagnosis, surgery, and treatment, this is temporary. This mess won’t be at the center of my life forever, as difficult as that is to imagine now. The ennui I feel today won’t always prevail. It’s easy to get caught up in the quagmire of unpleasant things that have come my way. I can see just how easy it would be to slip into the loving arms of pills, booze, rage, and self-pity. Name a vice, any vice; I’ll take it. It would be so, so easy to say I’m done, I’m out. Let the vultures pick my carcass clean because I give up.

I’m trying hard to walk on the sunny side of the street, as my sweet mama always advised. There are some dark and ominous alleyways around me, but I will seek out the sun and pound the pavement until all this madness is over. Those who have been on this “journey” before me assure me that one day it will all be a distant memory. I know this is true, yet it seems impossibly far away today. One day I will look back at all this and think, “Man, what a shit-storm that was.”


No autographs, please

Today is a very good day, for 3 reasons, maybe more. #1: Macy started two weeks of Fine Arts camp, which she loves (and I’m rather fond of having a few hours to myself while she’s off doing fun projects that someone else cleans up, and by “someone else” I mean anyone but me). While she hasn’t gotten quite this messy in a while, she’s definitely still got it in ‘er. 

#2: I did push-ups at the gym this morning. It’s been a long time since I’ve been able to do them, and there’s a bit of pride on the line since I was working out with my 12-year-old son. I wasn’t about to let him see me doing “girlie” push-ups with bent knees, so I tried the real thing, and while it didn’t feel great, I did it. Pre-cancer, pre-mastectomy, and pre-infection, I used to be able to do 50 push-ups like it was nothing, and while I’m not there yet, I’m getting closer.

#3: The article for which Payton and I were interviewed was published in our community newspaper. Corey the reporter was nice, and I think he’s a good writer. He has covered the district All Star games for all the ages, and he’s made the games come alive in his stories. P really enjoyed being interviewed; I like the drama of the article, especially the part in which I’m portrayed as “fighting for my life” (cue the dramatic music here).

It’s a good reminder to be careful what you say, too, because I joked with Corey about P having gotten his mad baseball skills from my side of the family. While it’s true–my dad’s baseball career started with PeeWee ball in 1948 and ended with him playing for the University of Tulsa–I was being smart-aleky, and Corey not only took it seriously but also included that in the article! I certainly don’t want to sound like one of “those” baseball moms. I think my kid is a good player who happens to have some natural athletic ability and a body built for taking some hard knocks. However, I’m under no illusion that he’s going to play ball for a living when he grows up, and his *$#& most definitely stinks.

While I can take or leave the publicity, reading the latest article did make me realize that a whole lot has changed since this time last year. And most of that change has been good. Really good.

This time last year, Payton’s All Star team was preparing for the sectional tournament, which they totally dominated, BTW. But I was fighting another battle against that damned nosocomial infection and was back in the hospital. Again. So after P’s team swept the sectional tourney, they were preparing to go to the State Championship in the lovely Tyler, TX. I remember thinking on that Monday, the day I was admitted to the hospital–again–that we’d get the infection under control, pump in some more vancomycin and I’d be on my way to Tyler.

Yes, I was that delusional.

Instead of the scenario playing out the way I’d envisioned, it went something like this: I was admitted on a Monday and didn’t get out until Thursday. An area that started as a red, streaky site on the mastectomied right chest wall had to be opened up, drained, excised, and packed with gauze. Repeatedly. The packing part was particularly brutal. See, there was a bunch of fluid inside my chest wall from the infection. Dr S cut a track–sans anesthesia, I recall–to open and elongate the drain hole, to let the fluid out. Once the track was there, though, it had to be packed with gauze to soak up all the nasty fluid. It wasn’t a quick process, because the hole and the track were small but had to be completely filled with gauze, for maximum soaking. Thus, a lot of shoving in an already sore, infected, and aggravated area was required. As was a lot of xanax. At one point, after Dr S shoved the gauze into the open wound, my blood pressure was 212/65. That’s a little high for me.

I survived 4 days of intense wound-packing and hard-core IV antibiotics. But just barely. I missed the entire State Championship experience, then put my kids on a plane for summer vacation, that I didn’t get to attend. I did manage to stay out of the hospital for 2 and a half weeks, but had IV antibiotics at home and a home health care nurse packing that wound. I was hoping to have turned a corner after all that (and more than once wondered what it would take to finally kick that infection) but was back in the hospital again the week before school started.

It was not a good summer, to say the least. This one has been much, much better. While the bar wasn’t exactly set very high after last summer, this one is pretty sweet.


As if the tornado wasn’t bad enough…

I feel a weird dichotomy of emotion when a friend hears about a rare and hard-to-treat infection and thinks of me. On one hand, it’s nice that my friends are the sort of people who know what’s going on in my life (I guess being a blabbermouth and having a blog help). On the other hand, it’s a weird feeling to be the one associated with the rare and hard-to-treat infection.

No matter, the horse is out of the barn, and the fact of the matter is that I did indeed have a rare and hard-to-treat infection, I am a blabbermouth, I do have a blog, and my friends rock.

So when the news broke that several people in the wake of last month’s giant killer tornado in Joplin, Missouri, have contracted a rare and hard-to-treat infection, my name came to mind. Perhaps this provides a bit of perspective for me. On many levels. It reminds me that while I’ve been through a lot, I also have a lot for which to be grateful. Namely things like this: #1, I wasn’t involved in the devastation of that giant killer tornado. #2, my rare infection was hard to diagnose but not especially hard to treat; just a giant pain in the ass. #3, my rare infection wasn’t deadly, as the one in Joplin is. #4, my rare infection is gone, baby gone. And, because I like odd numbers in lists, #5, I’m done with the 267-day course of oral antibiotics needed to treat my rare, pain-in-the-ass infection. Oh, if only I got paid extra for using hyphens in my modifiers.

cbsnews.com

The giant tornado last month in Joplin stirred up a lot of soil in its destructive path, and it uncovered mucormycosis, a deadly fungus among us. Like most bacteria and fungus, mucormycosis is all around us but only affects people who are already limping along with weakened immunity. The proverbial kicking a man who’s already down. It seems to prey upon people with diabetes, leukemia, lymphoma, and AIDS as well as those who have had an organ transplant and those who engage in chronic steroid use (Alex Rodriguez, you better be careful).

I must digress here for a moment about the mighty A-Rod. We don’t like him much in our house (understatement of the year, right there). Not just because we are die-hard, hard-core Red Sox fans and he’s on that other AL East team. You know, the one that wears those gawd-awful pinstripes. Ick. Well, A-Rod, in our opinion, typifies everything that’s wrong with pro sports: the drugs, the attitude, the disdain for the very fans who provide him job security. Imagine our surprise and delight when we found this yesterday:

An A-Rod baseball card, chewed to bits by our little dog Pedey. I love it! It’s even funnier because that little dog is named for Payton’s favorite Red Sox player, Dustin Pedroia. The idea of Pedey going after A-Rod fills my heart with pride. I’ve said before that Pedey is not much like his namesake: he’s lazy and clumsy with a ball, but in this case, Pedroia would be proud of this little dog for pouncing on A-Rod and tearing him to bits!

As long as we’re digressing for baseball-related ramblings, I might as well post a pic of my boy-crush, Jacoby Ellsbury. It’s been a while, and I know my loyal readers have missed him. Here ya go.

You’re welcome.

Ok, back to the Joplin tornado and its unwelcome sidekick. The tornado was a big one. An EF-5 to be precise. The EF scale refers to the Enhanced Fujita scale, which was developed at the Wind Science and Engineering Research Center at Texas Tech University. Yay Red Raiders. I don’t know much about the tornado scale, being a bit more familiar in this neck of the woods with the Saffir-Simpson Hurricane scale, but a quick peek on Wikipedia tells me that an EF-5 tornado means the storm has winds in excess of 200 mph. A bad-ass, scary storm, to be precise.

The May 22nd tornado cut the city of Joplin roughly in half with an estimated 7-mile-long by 1-mile-wide swath. It moved slowly and stayed on the ground rather than touching down and moving back up. All of these factors combined equal untold destruction, a death toll of 151 people, and the unleashing of a nasty fungus.

Eight tornado victims have contracted the mucormycosis, although public health officials won’t make an official link between the fungus and the tornado. Four of the people who tested positive for mucormycosis have died. It’s a nasty bug that spreads fast and can invade the blood supply of its victims, who typically have injuries and secondary wound infections. Sound familiar? Ugh. The rush of feelings and memories this topic evokes roars in my head much like a tornado. I think my PTSD is showing.

The mycormycosis fungus is usually found in soil and wood and enters the body either through a puncture wound or when a person breathes in mold spores. The dirt or vegetation becomes embedded under the skin, and mold is actually found in the wounds of people who have this bug. In some cases, wounds that had been stitched up after the tornado had to be reopened to clean out the contamination. Again, sound familiar? The incubation period is a little shorter on the fungus compared to the mycobacterium, and hopefully the fungus presents itself faster than the myco; both times I’ve been tested for that damn myco it took 6 weeks to present itself.

People with weakened immune systems who come into contact with this fungus have a mortality rate as high as 90 percent. Yes, you read that right: 90 percent.

wikipedia.com

It’s strange how the spores of this fungus look almost artistic under the microscope, yet can wreak unimaginable havoc on the human body. Compare that to my bacteria’s photo and you can see how vastly different these bugs appear under the microscope and why I have enormous respect for my sweet infectious disease doc. You rock, Dr Grimes! 

Because the mucormycosis fungus is so rare, medical research is limited, and treatment is simple but fraught with complications. Treating it sounds eerily familiar to me: confirm the bug, excise the affected tissue via surgery, and administer long-term and powerful antibiotics. Same plan I followed for the mycobacterium.

The Centers for Disease Control and Prevention said Friday that it is conducting tests to help investigate the infections, which are so uncommon that even the nation’s largest hospitals might see only one or two cases a year. In fact, Dr Ewe Schmidt, infectious disease specialist at Joplin’s Freeman Hospital, said that in 30 years of practice, he’s seen 2 cases of mucormycosis, both of which occurred in patients who had untreated diabetes.

“To my knowledge, a cluster like this [several cases of the fungus] has not been reported before,” said Dr. Benjamin Park, head of the CDC team that investigates fungal diseases. “This is a very rare fungus. And for people who do get the disease, it can be extremely severe.”

I’m so glad my rare infection wasn’t this deadly fungus. I’m even more glad that my rare infection is gone. And I’m so glad this guy and his dog survived the storm and the deadly fungus.

cbsnews.com


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