Patience, or lack thereof
Posted: January 25, 2011 Filed under: breast cancer, drugs, infection | Tags: ben franklin, breast cancer, Burger King, Dumas, Guns N Roses, homophone, love, lymphedema, Othello, patience, patient, Shakespeare, St Augustine, surgery, tennis, Tolstoy 7 CommentsTammy, my lymphedema specialist who I love and adore and
look forward to visiting, asked me a simple question yesterday:
When’s your reconstruction? I told her that the two surgeons’
offices (Dr S and Dr Spiegel) are supposed to be coordinating their
schedules and issuing a surgery date this week. I told her this
Monday afternoon, which for all intents & purposes, is this
week. In fact, this conversation took place in the afternoon of
this week, therefore in the far reaches of said time period. I
thought it was perfectly reasonable to expect to hear back from
those docs with my surgery date. After all, they’ve had since
Thursday to work on it. That’s plenty of time. Giddyup. She laughed
at me for being impatient. 
Good thing I love
and adore her, or else that might have made me mad. She’s gotten to
know me well in the last several months, and we’ve become friends.
She has educated me on the human lymph system and has schooled me
on how to (hopefully) continue unleashing a wicked forehand
(repeatedly, with great force, and multiple times a week) without
ending up looking like the “after” picture in the lymphedema
textbook. She knows I’ve been to a second surgeon and have decided
to venture forth toward yet another surgery, and I thought she knew
that I’m a very impatient patient. I don’t even know why the word
patient, meaning a person who requires medical
care, has be a homophone to the word meaning “the bearing of pain
or difficulty with calmness.” And I might even quibble with that: I
can bear pain & difficulty with calm, I just want to get
through it fast. Anyone who’s been a patient knows it’s hard to be
patient. If you haven’t learned this first-hand, trust me. I know
of which I speak. Lots has been written about patience. Everyone
from Shakespeare to Guns ‘N Roses has addresses this fragile human
condition. My favorite allusion by the Bard to the patience
principle is in Othello: “How poor are they that have not patience!
What wound did ever heal but by degrees?” I feel like Shakespeare
has been peeping in my windows again. I could show him color photos
of a wound healing by degree (but won’t gross y’all out by posting
them here). I have a bar graph, too, showing the wound dimensions
and how they changed, by degree. I’m serious about the photos and
graph. Alexandre Dumas, perhaps the most famous French writer of
the 19th century, knew enough about patience to utter this: “All
human wisdom is summed up in two words — wait and hope.” I’m good
with the latter, not so much with the former. And if it takes
patience to gain wisdom, forget it; I’m out. Not that I’m
particularly impulsive, but once I make a decision and set my
course of action, I’m ready to get to it. Now, not later. Leo
Tolstoy wrote that “the two most powerful warriors are patience and
time.” Egads, I’m double-hosed. We’ve all heard time & time
again that patience is a virtue. I don’t quibble with this ancient
wisdom, I just don’t happen to possess that virtue. I’m sure Dr S
is still laughing at me begging him to let me go home from the
hospital the day after my mastectomy. I was ready to get outta
there and get on with my life. Not so fast, lady. Ben Franklin
wrote that “He that can have patience can have what he wants.” I
always though he was kind of a smart-ass. And why can’t I have what
I want without being patient? Where’s the Burger King motto in all
this? I want to have it my way, and my way is now. Right now. St.
Augustine was probably very patient. He too linked patience to
wisdom: “Patience is the companion of wisdom.” Whatever. I
understand all these ancient guys speaking about patience: the
world moved at a much slower pace back then. They’d probably flip
their wigs if they knew of the modern world and all its speediness.
Imagine those guys seeing a bullet train, or the Autobahn, or even
Loop 610 in Houston, and not even at rush hour. What about a
conveyor belt flanked by factory workers, producing goods from
digital watches to cars in a hurry? Or drive-through food or pizza
delivery? I don’t think any of the pizza chains offers “30 minutes
or it’s free” anymore, but still, when I order a pizza online, Papa
John has it ready in 2 shakes of a lamb’s tail. (such a cute little
expression, right?) The point is that these esteemed writers,
thinkers, and movers & shakers can blab all they want about
being patient, and I will listen (impatiently) and consider what
they say (as I rush off to do the next thing on my list). But I
still want it my way, which is now. 
PTSD
Posted: January 21, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: breast cancer, Greece, infection, mastectomy, politicians, PTSD, recovery, soldiers, stress, tamoxifen, war 14 CommentsWhile brushing my teeth and inspecting the bevy of brown spots on my face (thanks, crazy hormones), I noticed something that made my heart pound, my stomach drop, and my blood run cold. 
Not to be overly dramatic here, but I was scared. Only for a second, but really and truly scared.
I saw a small dark spot on my jammies top, right near my personal “ground zero” or also known as my right chest wall, site and host of the Mycobacterium Olympics 2010.
My first, terrifying thought was that fluid had leaked from my skin at the site and soaked a spot on my shirt.
Not a good thought.
Turns out it was a small piece of fuzz from a red blanket, but it was in just the right location and was just enough darker than the pink jammie top to look like a wet spot.
It’s been 5 months since my last hospitalization for this wretched infection, yet it still has the power to scare the tar out of me and render me speechless, breathless & frantic for a moment at any given time. There has been (knock wood) absolutely no sign of said infection for those 5 glorious months, but it still freaks me out.
I’ve joked before about having PTSD — post-traumatic stress disorder. Now I’m thinking it’s no joke. Then I see this article, from the Telegraph online. Kismet? You betcha.
The article starts with a catchy lead (y’all know I’m a sucker for a good lead): “The debilitating disorder is often characterised by agitation, anxiety, depression, nightmares, flashbacks, and mood swings. It is more often associated with soldiers returning from battlefields who have been shell-shocked by their experiences.” 
Ok, I admit when I read it, I thought “flashbacks” meant “hot flashes” for some reason. Perhaps because I was suffering from one (hot flash, not flashback) at the moment I read that sentence, and my brain went a little wonky from it.
But here’s the important part: a new study (I also love new studies) has found that women diagnosed with breast cancer have an effect similar to PTSD. Researchers site the effect of diagnosis combined with all the unknowns (surgery? chemo? recurrence? etc) equaling a good chance of developing PTSD. They studied 331 women in a Greek hospital and found that 45 percent showed signs of PTSD. What they did not disclose, however, is how they came up with 331 as their sample size. Inquiring minds would like to know. That seems like an odd number to me, no pun intended. The findings were presented at the Impakt Breast Cancer Conference in Brussels. Now not only do I wonder about the 331 women, but also who in their right mind would spell the name of their conference incorrectly? Impakt? Really? Or is that how “Impact” is spelled in Brussels? Why doesn’t the article tell me these things???
Last year there was a similar study done on the possibility of PTSD in heart attack victims. Seems 1 in 6 heart attackers (16 percent of those studied) suffered from PTSD, while some 18 percent of them exhibited symptoms.
Those kinds of statistics confuse me. Does it mean that 16 percent of the total group studied had full-blown PTSD, while another 18 percent of the same group just had some symptoms? Regardless of the answer to that question, it’s interesting (to me, anyway) that the percentage of breast cancer patients suffering PTSD was so much higher than the percentage of heart attackers who suffered.
Anyhoo…
I’m not a researcher and am not involved in any groundbreaking studies, but I’d guess it’s not just breast cancer that renders its victims full of PTSD. What’s really scary is that women still show signs of PTSD even if their “cancer journey” is complete, with successful treatment and remission of the dreaded disease.
Uh oh. So it’s not enough to accept the diagnosis, endure the surgeries and/or treatments, decide on reconstruction, and monitor our health ad nauseum. We also have to slay the disease, but live with the resulting monkey on our back.
Suck.
They also found that women still suffered PTSD and had a poorer quality of life three years after diagnosis and treatment.
Double suck.
I’m imagining fast-forwarding to 2013, when let’s assume for the sake of this argument my infection is a thing of the past and I’m cruising through life with new girls. Euphemistically speaking; I’m not ditching all my friends and finding new ones. I like ’em all too much to ditch ’em.
Let’s imagine that my “cancer journey” is complete in 2013, except I still take my daily Tamoxifen and see my oncologist every 3 months and get body scans quarterly. I am, for the most part, done. But I’m still going to have PTSD? And a crappier quality of life?
The researchers, from the Panteion University of Athens, warn that doctors should watch out for the signs of the condition when they are treating patients with breast cancer. Those Greek people are smart, gorgeous, and all-around awesome, and everyone on Earth would be wise to listen to and emulate them.
They warn: “Knowing that breast cancer patients are susceptible to PTSD, it might be necessary for the field of medicine to create a plan in assisting cancer patients that takes into account the entire spectrum of a patient’s experience with the illness.”
Emma Pennery, from the British charity Breast Cancer Care, said: “The principle that women, and men, will have an ongoing risk of anxiety and depression following a diagnosis of breast cancer is well known, and there is a range of national guidance in the UK which covers the role of health care professionals in providing ongoing emotional support to patients. ”
I’m curious about that “range of national guidance” and wonder if it will make it across the pond. I certainly haven’t gotten any national guidance in all this. That said, if some form of it came my way, I’d probably scoff at the bloated, partisan jibber-jabber as something dressed up to look valuable but in reality is just an oily politician’s idea of pandering to me and those in my shoes.
But that’s probably just the PTSD talking.
drugs, drugs, and more drugs
Posted: January 20, 2011 Filed under: breast cancer, drugs | Tags: amoxicillin, Antibiotics, bacterium, breast cancer, champagne, infection, minocycline, prescription, recovery 5 Comments
So my doc asked me the other day if I’m still taking my antibiotics.
Really?
Did those words really come out of his mouth? Why, I oughtta…
Yes, I’m overly sensitive about this issue, because I hate the antibiotics so much. Love that they’re killing the infection, but hate them nonetheless.
Yes, I am still taking my antibiotics. Twice a day, every day. With no end in sight. I haven’t missed a dose, I say proudly, although no one seems to think this is a worthy feat. Sometimes people need a quick left jab, right to the kisser.
Not that I’m complaining. Really, I’m not. I’m glad that I have these drugs in my life. Who knows where I’d be (or whether I’d be here at all) without them. I’ve been on some form of antibiotics since May 13, with just one week off.
There was the precautionary IV dose during and after the mastectomy. Then an oral course at home for the first 10 days out of the hospital. Once I started feeling better, an additional course seemed superfluous. Wasn’t I healing like a rock star, even ahead of schedule in my typical impatient, over-achieving way?
Uh, yeah. So much for that.
Infection: enter stage right and become the star of the show.
Damned mycobaterium has become the bane of my existence. I hate it like I hate Sarah Palin. I wish she would have gotten the myco instead of me. Surely she could have picked it up in one of those mountain streams she claims to ford as she’s impaling innocent salmon. I’d like to see her be all cocky and try to “reload” in the midst of the myco.
But again, I digress.
That happens a lot.
I can’t blame it on “chemo brain,” but I’m going to blame it on “abx brain.” Surely the continual supply of Bactrim and Minocycline in my body all day every day for the last 169 days qualifies me for that small disability.
Yes, that’s right, I counted the days. I like to know just exactly how long I’ve been taking these two drugs, twice a day every day. I also take a dose of Florastor probiotic twice a day every day. The few times I’ve been lazy or resistant to shoving yet another pill down my throat and skipped it, I’ve been sorry. I owe a big debt of gratitude to Susan C. for recommending the Florastor, and if you’re they type who gets an upset tummy while on your week’s worth of Amoxicillin, you should take it too. I typically have a cast-iron stomach, but the 169 days of oral drugs combined with the myriad variations in the hospital, then shaken not stirred with the little bits of good drugs (e.g., Vicodin) thrown in for grins has given rise to a need for Florastor. 
Here’s the cast of characters now: the blushing beauty in the bi-colored pink is Minocycline. It’s a member of the tetracycline family, which a lot of people–mostly teens, I guess–take for acne. In fact, one of the many Walgreens pharmacists I’ve gotten to know asked me if I take it for acne. I chuckled and said no, why? And she said, “because your skin is really clear, so I thought it must be working.” I may suffer from hot flashes, mood swings and brittle hair but by golly my skin is clear. I like that pharmacist a lot.
I’ve been trying to be very vigilant about taking my meds properly, rather than tossing them back and washing them down with a flute of champagne. Or two. Or three. Hypothetically speaking, that is. I’d never do that for real.
I’ve even read the literature that comes with the drugs from the pharmacy. Talk about a giant mess of C.Y.A. Take this little gem for the Minocycline: “Take this medicine with a full glass (8 oz/240 ml) of water” (not champagne?). I like the idea of 240 ml of bubbly. “DO NOT LIE DOWN for 30 minutes after taking this medicine.”
Well, I admit it’s been a while since I’ve read this info. Like 169 days, probably. And in my “abx brain” haze, I didn’t remember the DO NOT LIE DOWN part. Every night, I mean every single night, I gulp down the drugs with a sip or two of water, which is by my bedside, then I promptly LIE DOWN AND GO TO SLEEP. Oops. If my failure to NOT LIE DOWN means the Minocycline isn’t working, I’m going to be really mad.
This part of the Minocycline’s instructions is particularly vexing: “DO NOT TAKE THIS MEDICINE with food or milk unless otherwise directed. This medicine is sometimes taken with food or milk, however, certain medicines, food and milk may bind with Minocycline, preventing its full absorption.”
What’s a girl to do — take it with food or milk, or not? I don’t like instructions that include “sometimes.” I prefer black & white directions.
Here’s one part of the Minocycline instructions I can willfully and completely ignore, though: “THIS MEDICINE IS EXCRETED IN BREAST MILK. DO NOT BREAST-FEED while taking this medicine.” Ok, I won’t. I promise.
After you’ve finished laughing uproariously, as I did when I read this, let’s move on to the second antibiotic, Bactrim. This big guy is a member of the sulfameth family. Sadly it has none of the desirable characteristics of meth-derived drugs like increased energy, decreased appetite, effortless weight loss and eternal youth. 
It’s just a big, nasty, chalky pill.
Here’s a handy little graphic to show you just how big and just how nasty it is.
Twice a day, every day. For 169 days and counting.
It’s not without its humor, though. An excerpt from Bactrim’s monograph made me laugh again: “DO NOT STOP OR START any medicine without doctor or pharmacist approval. Inform your doctor of any other medical conditions including liver or kidney problems, blood problems, asthma, HIV, allergies, pregnancy or breast-feeding.”
Those last two made me chuckle, and I felt safe in crossing those off my list of things to worry about. Onward.
Bactrim, too, is picky about how you take it, and the monograph advises taking it not only with a full glass (8 oz) of water, but to also drink several additional glasses of water daily. No indication of how many ounces those glasses should be, though, and not a mention of milliliters to be found. Curious. I’m just glad it doesn’t yell at me to AVOID TAKING THIS MEDICINE WITH A FLUTE OF CHAMPAGNE. That would be depressing.
Here’s the best part of the nitty-gritty details of Bactrim, and I quote, “LONG-TERM OR REPEATED USE of this medicine may cause a second infection.”
Pardon me?
Did that really mention a second infection?
Excuse me while I go get some champagne.
Don’t let the door hit ya…
Posted: December 31, 2010 Filed under: baseball, breast cancer, drugs, food, infection, kids, pets, tennis | Tags: 2010, 2011, 40th birthday, baseball, BCAM, beach, breast cancer, champagne, Christmas, coconut cream pie, coffee, crab, cupcakes, dog, food traditions, girlfriends, golden retriever, homemade rolls, Jack Johnson, margaritas, Maroon 5, memories, morphine, New Year, recovery, survivor, swim, tennis, yeast rolls 11 CommentsAs we prepare to bid adieu to 2010, I took a stroll down memory lane in the months since I joined the club of which no one wants to be a member. There were some great moments in the first few months of 2010, or BC (before cancer), and I made it my mission to ensure that the months that followed had the same. Two weeks before I was diagnosed, life was grand, as evidenced by the happy girls in this photo of Yvonne’s birthday dinner at Stella Soli. So fun! Who knew that something wicked this way comes?
The day before my surgery, Macy and I had the great good fortune to meet Jeffrey, a baby mockingbird rescued and rehabilitated by our friends the Hoovers. 
I’m sure I had a million things to do to get ready for the big day, but meeting Jeffrey was high on the list, and I wasn’t going to miss out on the chance to have this sweet little guy hang out with my favorite girl.
An awful lot of people did a whole lot of nice things for my family and me, following my surgery, including but certainly not limited to custom-made cupcakes,
an apropos coffee mug for my cup of Joe (the photo is small but the mug says “cancer” with the red circle & slash mark,
and home delivery of my all-time favorite coconut cream pie. You know you’re in the inner circle if you’re invited to share a slice of my cousin Tom’s homemade heaven. 
One of my first post-surgery outings was around the corner to dinner at the Cremers’ for Keith’s famous crab towers: lump crabmeat topped with a most delectable avocado-mango salsa atop a bed of greens with a citrus-y vinaigrette.
Dinner at their house is always good, because he and Jill are both fantastic cooks and there’s always plenty of bubbly on hand. 
Y’all know how much I love my bubbly.
Some may say I love it more than my kids, but that’s not fair.
We all know it would be a tie.
Two weeks after the surgery, but before the dreaded infection showed up, it was my birthday. Those who say it’s all downhill after 40 may not realize that to a cancer patient, each and every birthday is a gift, and I met birthday number 41 head-on with a welcome embrace: Mexican food, margaritas and the cutest cake ever with my girls. None better. Who cares that I still couldn’t wash my own hair at this point? Not me! I was happy to be upright and out of the house.
A week after my birthday, the bottom fell out of the extraordinary recovery I was experiencing post-surgery. We were at a joint birthday party for 3 June girls (but there were no joints at the party; that’s how rumors get started!), and I didn’t feel good. After two weeks of slowly but surely making progress and feeling better, this was weird. What was really weird was waking up the next day to a huge red rash and blisters at the surgery site on my right side. You don’t have to be a doctor to know that is not good.
In the time that I was hospitalized the first time, Payton made the All-Star team 
and embarked on one of the most memorable summers ever, for baseball. Memorable because the team did so well (District champs, Sectional champs and on to the State championship in Tyler) and because the boys chose to show their support for me very publicly by wearing pink sweatbands all summer. These warriors in pink tore it up on the baseball field and made this mama so proud.
I only made it to a couple of games but got to follow along with all the action thanks to an iPhone app that allowed Trevor to “broadcast” the games to a website that I followed on my iPad from the hospital. I will never forget the look on the nurse’s face when she came into give me a shot of morphine and I told her I needed to wait (I never turn down the good drugs) because I wanted to keep my wits about me and follow the game. Also memorable was the wound-care specialist who had two sons go to State as All Stars who called me from home at 10:30 pm to see if Payton’s team won. They did. 
In between hospitalizations, I spent a couple of hours one day in my backyard in the sunshine, watching Harry frolic in the pool. After being cooped up in a dreary hospital room and feeling lousy, the fresh air, sunshine and unbridled canine joy were just what I needed.
One of the best days of all was in early July, in between hospital visits. I had been to see Dr Darcourt, my third oncologist, and learned that he agreed with all the research Trevor had done: no chemo! Celebration was in order, and when Amy & I ordered champagne at lunch, our sweet waiter at PF Chang’s asked if there was something special to celebrate. He had no idea but we filled him in! 
Another highlight was getting to spend the weekend in Galveston with Christy & Alexis, who were kind enough to teach Macy how to fish. And fish she did: that girl caught the biggest fish of the trip! Later that night, I caught a baby sting ray (not my intent, for sure). I still feel bad about that poor little guy happening by the tempting lure on my fishing pole. All’s well that ends well, though, and with some help from some more seasoned fishermen, the little guy was freed. More importantly, I had a fun weekend with great friends that approximated a return to what most people consider a normal life. 
Despite the idyllic setting, that weekend was just an approximation, though, of normal life, and the infection would puzzle and vex not one but two set of infectious disease doctors. After two more hospitalizations and a new team of ID docs, we got a handle on it, and although the last thing I wanted was to go back to the hospital, and to the Medical Center at 10:30 on a Sunday night no less, I wasn’t alone in the joint. 
Macy loaned me her beloved Froggy to keep me company, and he took his job seriously. He didn’t left my side until I was allowed to go home, and then he went straight from the suitcase into the washing machine lest he brought home any nasty germs from the hospital. We’d had quite enough of those in our life.
Early August was bittersweet: I was on the mend, literally, but still on IV antibiotics at home and not well enough to travel to Boston for our annual vacation. After already having missed my Duke girls’ trip to Lake Tahoe in early June and all of the State championship in Tyler, I was beyond sad to miss this trip, which is always the highlight of our summers. Leave it to Macy, though, to bring me a fantastic souvenir: Continental Airlines had unveiled a new drinks menu on her flight home from Boston, and she got me a pomegranate martini mix and, once home, brought two glassed full of ice, two lime wedges, and one shot of vodka. My favorite girl and I had a welcome-home drink together. Of all the bevvies I’ve consumed, that one may be my all-time favorite.
A few days after school started, and a week or so out of the hospital, Macy & I had tickets to see Jack Johnson play at the Woodlands pavillion. After a string of disappointments all summer, I was determined to make it to the show. It poured rain on us and traffic was horrendous, but we made it and had a great time. What would be an already-sweet occasion was all the better because I was there, upright and out of the house!
I got through the rest of August and September without incident, and was starting to think maybe, just maybe I would be able to actually make and keep some plans that didn’t involve a hospital.
October marked my first foray into Breast Cancer Awareness Month as a survivor. While always aware of the fact that every October is earmarked and punctuated with lots of pink ribbons, it’s a different experience on this side of a cancer diagnosis. I was tickled pink (sorry, couldn’t resist), when Payton’s baseball team played in this tournament. 
Next up was an event that was huge for me: the Witches’ Open tennis tournament at our club. I went into my double mastectomy in the middle of our tennis season, not knowing how the surgery would affect my game. Of course it never crossed my mind that I wouldn’t get my game back, the question was how much and how soon. So playing in the Witches’ Open was a stellar event. Not only did I play with my longtime running buddy, Staci, but we won! I’m pretty proud of our little trophy.
That same night, still basking in the sweet glow of victory from the Witches’ Open, I made a return trip to the Woodlands pavillion for the Maroon 5 concert. Talk about a perfect day: tennis then a road trip & dinner with super fun girls, then the show. That great day slid into a great night, and again I was beyond happy to be upright and out of the house. 
As if this month hadn’t been great enough, the last Friday night in October was the icing on the cake. I gathered by BFFs for the first annual Pink Party. Prepare to be seeing photos of this event every year for the rest of my life. It was that good. Many a nights laying in the hospital bed, I thought about what I was going to do once I finally got well enough to do something for my friends to show my appreciation for all the love and support they’d so freely given during the worst time of my life. The Pink Party was all I had envisioned it would be, and the fact that I was able to put on the dog for my girls was monumental for me. 
Next on the calendar was Thanksgiving, and at the risk of sounding totally hokey, I had an awful lot to be thankful for this year. At first, as we approached the holiday, I tried not to think too much about it, for fear that reflecting back on all that had happened would overwhelm me. Then I realized that’s whacked, and instead of avoiding it, I should be relishing it–every bit of it. Another major triumph for me was making my mom’s famous crescent rolls. I’ve made them before with limited success, but this year, they rocked. 
After Thanksgiving of course was Christmas, and the first ornament to go on our tree was this one: the cocktail shaker that says “Shake It Up.” I intend to do just that in the New Year.
And for the record, it was Macy who picked that ornament to go on first, in my honor. That girls knows me so well. Like most families, we have lots of cute and meaningful ornaments in our collection, but it makes me smile that she chose this one to kick off our Christmas season.
So as 2010 draws to a close, I can’t say that I’ll miss it. Unequivocally, it has been the hardest year ever. But amid the chaos and confusion and abject misery, there were a whole lot of bright spots. Those moments and memories outshine the yucky stuff.
Dear Santa,
Posted: December 22, 2010 Filed under: breast cancer, cancer fatigue, drugs, food, infection, kids | Tags: Bactrim, baseball, Biaxin, bloodwork, bone scan, BRAC, breast cancer, cancer diagnosis, Cefapime, champagne, Christmas, Christmas list, Cipro, collection agency, CT scan, dogs, ER positive, flat chest, genomic testing, good girl, health insurance, HER2 negative, home health, hospital, Houston, infection, infectious disease, injections, IV antibiotics, kids, L-Dex, lymph nodes, mastectomy, minocycline, MRI, PET scan, plastic surgery, post-mastectomy, PR positive, Santa, survivor, tamoxifen, Vancomycin, wound care, wound vac, x-ray, Zyvox 4 Comments
I’ve been a pretty good girl this year. I’ve smiled at fussy babies in checkout lines at HEB. I did my time at the grade-school class parties (not my scene, to say the least). I called the collection agency back — yes, I really did — when they left me a message saying I owed money on a past-due hospital bill that my insurance company says has been paid. I donated nearly-new clothes & home goods to charities multiple times. I helped out with the school fundraiser, even though I really, really, didn’t want to. I’ve said please and thank you and bring my own bags. I was a big girl and good sport about all the trips and baseball games I missed this past summer.
And while we’re on the topic of this past summer, dear Santa, do ya remember all the hell I went through? It all started on April 27, 2010, when I was diagnosed with breast cancer. Talk about an “aha” moment. The timeline quickly unfolded like this: the rest of April and first part of May were consumed with tests, tests, and more tests: BRAC analysis, CT scans, x-rays, PET scan, bone scans and MRI. In case that’s not enough acronyms for ya, there was also the L-Dex and then the genomic typing of ER/PR positive and HER2 negative. More injections and blood draws than my poor left arm’s veins could keep up with (literally; there’s a permanent knot in the big vein). Countless appointments with the breast surgeon (Dr Dempsey, who is on the “nice” list) and plastic surgeon (Dr S, who may be on the naughty list), and 3 different oncologists.
Meanwhile, there was research to be done and crushing decisions to be made as I prepared for surgery. The phrase “life and death” took on a whole new meaning, sweet Santa. There’s a strange juxtaposition between packing school lunches and signing field trip permission slips while also filling out my medical directive and living will. I learned pretty fast how to act normal when everything around me had been turned upside down. I think, dear Santa, I also did a pretty good job of adjusting and adapting to the new normal. I think, fat man, I’m still doing a damn fine job of that. One quick look at my profile tells you that there most definitely is a new normal around here.
Santa baby, I was a good girl after the double mastectomy and the lymph node removal that left me battle-scarred and weary. I was an especially good girl in the face of the plethora of prescription drugs I could have used & abused. I was a diligent girl when it came to choosing green drink over Diet Coke, all-natural hormone-free yogurt over Blue Bell.
Santa, I was a brave and good girl when the nasty infection set up shop in my still-raw chest wall. I endured the 103-degree fevers, 22 days in the hospital, multiple tissue excisions and untold poking & prodding without much complaint. I missed the comforts of home, my dogs & my kids more than words can say, but I only cried twice. And even then, it was when no one else was around to see.
We don’t even need to recount the 18 days during which I was attached to the wound vac 24-7. I would really like, dear Santa, to permanently erase that memory from my grey matter, por favor. But I would like to remind you that I was a trouper during the home health days, and all those hours that were consumed with wound care and the administration of IV antibiotics. And while I’m at it, can I get a little shout-out for not killing Dr S, even though he probably deserved it?
Oh Santa, I do crave some credit for all the antibiotics I’ve endured — and continue to endure. From the Vancomycin to Cefapim, from the Cipro to the Zyvox, from the Biaxin to the Bactrim and Minocycline. Those last two will be part of my daily routine for a few months yet, but I’m already looking forward to the day in which I don’t have them on my kitchen counter anymore.
So Santa, how about we make a deal? I’ll set out all the milk & cookies you want in exchange for one little thing. All I want for Christmas is to have it easy for awhile.
A Funny Thing Happened…
Posted: December 5, 2010 Filed under: breast cancer, drugs, infection | Tags: antibiotic, breast cancer, champagne, drugs, hot flash, iron, mastectomy, menopause, pharmacy, post-mastectomy, prescription, survivor, Walgreens 3 CommentsI was at Walgreens (again) to pick up (yet another) prescription, and had one of the best belly-laughs I’ve had in a while. Thank heavens Macy was with me, or I might have embarrassed myself, and the pharmacist, even more.
To set the scene: I go to Walgreens a lot. They know me there, kind of like how it was for Norm on Cheers, but without the drinks and witty repartee. I have lots of prescriptions, all of which are on a slightly different schedule, so that I can’t ever manage to go pick up a month’s worth of all my drugs but instead make multiple trips every month.
Usually, there’s either a grandfatherly pharmacist or a host of young female techs. This visit, though, I found a sweet young male tech behind the register, and another sweet young male pharmacist. While these two fellas were plenty easy on the eyes and seemed competent at their jobs, I do prefer the grandfatherly pharmacist because he always calls me “miss” instead of “ma’am.” I know, it’s a farce, and I know I’m way more “ma’am” than “miss” at this stage of the game, but I like it anyway.
The young whippersnappers both referred to me as ma’am, but I’m not going to hold that against them. The young tech went to get my order, and the young pharmacist butted in to ask if I had any questions about my meds. I thanked him but said no, I’m a frequent flyer here, quite the pro at taking these drugs. He couldn’t just leave it at that, he had to be extra thorough and read the warning labels on one of the drugs, either one of my antibiotics (yes, I’m STILL on them both) or my iron supplement, I’m not sure which.
So he looked at the label and asked me, in all seriousness, if I might be pregnant or am breastfeeding. I can’t decide which scenario is most amusing: pregnant me, in all my forced-menopause hot-flashing, hormonalness; or the idea of breastfeeding with no um, breasts. Those poor sweet young men behind the counter didn’t know and can’t be blamed. And I’m pretty sure both were quite horrified when I told them, in no uncertain terms, that both scenarios are quite impossible for me and that any baby relying on me for breastfeeding would be utterly starved to pieces.
We had a good hee-haw about it, and the tech said something about the fact that I look young for a cancer patient. Shows how much he knows: there’s no mean demographic for cancer. The pharmacist said, any age is too young to be a cancer patient. And how.
It’s just rice
Posted: November 6, 2010 Filed under: breast cancer, drugs, infection | Tags: breast cancer, cancer battle, cancer diagnosis, Daylight Savings, food groups, hospital, housekeeping, infection, infectious disease, the Medical Center 2 CommentsMost people probably spend the extra hour we gain in Daylight Savings by sleeping. I usually use that extra hour to clean, as something around here always needs cleaning. This time, however, I’m going to spend the extra hour reflecting on my good health.
It’s a tenuous state. And after my little scare this week, I’m planning to savor it even more. In case you missed the update, I had some fluid on my right side that Dr S wanted to drain so he made yet another hole in my chest wall on Tuesday. All week the gunk that drained out of the latest hole was pretty nasty looking, and infection was on everyone’s mind.
Friday I saw the newest member of my infectious disease team, Dr Samo. I wanted him to see the gunk and tell me unequivocally that I had nothing to worry about. As much as I try to live by the “don’t borrow trouble” mantra (thank you very much, Amy Hoover), this gunk was worrisome.
As I drove into the Medical Center Friday morning, I was mentally reviewing the all-too-familiar list of things to pack for a hospital stay, just in case. I even wondered if I should pack a bag, since I had no idea what to expect from this doctor visit. Imagine my relief when Dr Samo was universally unimpressed with my gunk. I’m really glad. He said he agrees with Dr S, that we’re not looking at infection but simply some unhealthy tissue that’s not getting enough blood supply and dying a slow, gunky death. That kinda creeps me out, to think of decaying stuff on the inside, but compared to infection it’s positively lovely. Big sigh of relief.
There was some great comic relief in the waiting room of Dr Samo’s office. An elderly lady was waiting with her daughter, and both were pure country. They talked r-e-a-l slowly and with a heavy twang. No idea what they were there for, but they had a hilarious conversation that was too funny to not overhear. Mama said to daughter (very s-l-o-w-l-y), Next time you go to the store, I want you to bring home an orange. After a very long pause, daughter asked why, and mama said, to eat of course. Daughter chose to dredge up some ancient history by mentioning the apples she brought home from the store that mama never ate. Mama knew she was busted, and deftly changed the subject to someone named Timothy, who apparently isn’t much into fruits & vegetables, but according to mama, eats more than you think. She went on to say that when you think about it, Timothy eats salad (r-e-a-l g-o-o-d), and will eat peas, corn, potatoes, baked beans and rice. Daughter let the baked beans go, but pointed out that rice isn’t a fruit or vegetable. Mama said, well sure it is; if not a fruit or a veg, what is it? Daughter said, It’s just rice.
So there you have it folks, at the end of the day, it’s just rice.
supplies
Posted: November 3, 2010 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: antimicrobial, blog, breast cancer, cancer battle, cancer diagnosis, curse words, good health, home health care, infection, medical supplies, stress, wound care, wound vacuum 5 Comments
I was just wondering what I could blog about, since it’s been a while since I’ve posted anything. Now that my life is more or less back to normal, there’s just not as much fodder for posts. This is a good thing, because it means my health isn’t full of breaking-news updates, but a bad thing because I really like writing and many of you kind souls have said you really like reading my posts. So I was pondering this while doing something seemingly insignificant but actually quite momentous over the weekend. I put away all my medical supplies.
There’s been quite a collection on my bathroom counter since August. Way back in late July & early August, while I had home health care for the IV antibiotics, I amassed a huge pile of supplies. Everything from wound vac stuff (remember Sucky?) to heparin flushes to alcohol wipes to gauze pads. And a bunch of other stuff in between. I hated every piece of medical paraphernalia from the moment it entered my home. I know I should be grateful for it all, and for the comprehensive health insurance that paid for everything. And I am. I truly am grateful, and think a lot about how much more stressful this whole mess would be without insurance. But I still hated all the supplies.
I hated the supplies because they reminded me, in a very tangible way, of how perilous my health was. No one ever talked out loud about how dangerous this infection business really is, but you’d have to be be pretty dense to not get it. I certainly didn’t need a reminder to know that my situation was serious — I lived it every second of every day. Even now, 2-plus months after all that mess, it still scares me, just a little bit. I still look over my shoulder and don’t entirely trust the good health I’ve been enjoying lately.
So this weekend I got cocky and decided it was time to pack away the supplies. I no longer needed the saline and gauze to clean a wound, or the antimicrobial silver dressing to put inside the wound, or the antibiotic cream and tape. My skin can finally breathe now that it’s not encased in plastic dressing and tape. I’ve been lax in taking my temperature every day, and only do it every other day. I still have the syringes and teeny little vials of B12 liquid that gets injected in my arm once a month. And I still have a stash of pain pills, which I don’t need but I like knowing they’re around, just in case. But for the last several weeks, I haven’t needed to get into those supplies.
Once that nasty wound finally healed, there was little need for the plethora of stuff, but I was so used to having it on my bathroom counter, it all really seemed to belong there. It became a fixture, I suppose. Until this weekend. When I got cocky, again. Last time I got cocky, I decided I didn’t need the probiotic anymore, even though I’m still on two antibiotics twice a day. That lasted exactly 2 days. But several weeks had passed without incident, so I guess I got bold and decided it was time for the supplies to go.
Silly, silly girl. When will I ever learn? I’d been feeling not quite right for the last several days. Nothing I can really pinpoint, but something seemed off. So when I saw Dr S today he immediately noticed a reddish-purpleish spot on my right side that seemed pretty puffy. I think his exact words were, What the hell is that??? Never a good sign. So he poked around for several tense minutes and sure enough that spot felt different than the surrounding tissue. He squished it pretty good and said there’s fluid in there.
I won’t repeat the litany of curse words that went through my head at that exact moment, but suffice to say it would make a former Marine or tattoo artist or school lunch lady proud. That was some professional cussing going on in my head. The quality of the cussing almost distracted me from the inevitable: Dr S moved away from the exam table (which is like a second home to me) and headed for his supplies. He never says much but we’ve been down this road before, or as Payton’s speech teacher Ms. Pointer would say, this is not our first rodeo.
No, sadly, Dr S and I have been rodeoing together long enough that I know that when he heads for the supplies, he is going to come back with a sharp object in his hand and a very determined set to his jaw. He did not disappoint me.
He sliced me right open, and sure enough the fluid came rushing out. Not as dramatic as the “black gold, Texas tea” segment on the opening scene of The Beverly Hillbillies but it did bring that little blast from the past to mind.
Long story short, we don’t know what’s going on. It’s probably nothing serious (repeat that phrase 1,000 times for good measure). He cultured it, so maybe we’ll know something by the end of this week. Or maybe not, because one thing I’ve learned in this long, rotten education is that you don’t always get an answer right away, and you don’t always get the answer you want. Fingers crossed that we’re not talking about an infection here. I shudder to think about the prospect of another infection, or a variation on the one I already had, especially since I’ve been on 2 oral antibiotics for something like 12 weeks. Yes, you read that right: 12 weeks. Nearly 100 days of twice-daily abx. If I’m not covered then I may just have to give up, tell the bacteria to come & get me. Have at it.
I’m not ready to start waving the white flag just yet. But I will get the supplies out of the bathroom closet and put them back on the counter, where they belong. At least for now.
The Pink Underbelly 