Blog Party, APA style
Posted: May 16, 2012 Filed under: cancer fatigue, drugs, menopause | Tags: American Psychological Association, antidepressants, antidepressants used for conditions other than depression, beta blockers, Dana Jennings, insulin, menopause, Oncotype DX, psychological effects of cancer, PTSD from cancer, statins, stigma and depression, tamoxifen 18 Comments »The American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.
The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.
Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.
Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.
We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).
Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.
I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.
I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.
I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.
Webmd has an entire online community devoted to cancer. From the web site:
“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”
“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”
“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”
Tamoxifen and kids
Posted: March 5, 2012 Filed under: breast cancer, drugs, menopause | Tags: adjuvant therapy, CVS, estrogen, Extreme Home Makeover, National Cancer Institute, philadelphia college of pharmacy, presecription drug mix-up, recurrence prevention, side effects of tamoxifen, tamoxifen, Tamoxifen side effects 6 Comments »Did y’all hear about this? A Trenton, New Jersey CVS pharmacy accidentally dispensed tamoxifenn instead of pediatric fluoride pills.
abcnews.com
Yikes.
I love CVS for the generous donations they made to Extreme Home Makeover, the feel-good show that used to be on TV. I searched to find a source to tell me how much CVS donated via the show over the years, but my patience wore off before I could find an answer. Suffice to say it’s a lot.
When I read about the drug mix-up, I cringed. The estimate is that as many as 50 kids received Tamoxifen instead of their chewable fluoride pills between December 2010 and February of this year. CVS hopes that any one of those 50 kids who tried to chew a tamoxifen pill instead of the usual fluoride pill would notice that something was different. Daniel Hussar, who teaches at the Philadelphia College of Pharmacy, was quoted as saying that because tamoxifen is meant to be swallowed, no effort is made to make it taste good, as is the case with chewable fluoride. He says a child who tried to chew tamoxifen would likely “want to spit it out or tell his parents it tastes bad.”
If they didn’t notice the taste, I wonder if they noticed the side effects. I pity the parent who has to deal with a moody, hot-flashing kid.
Because tamoxifen’s job is to block estrogen and prevent breast-cancer recurrences, it can monkey with one’s hormones. I’ve written about this very topic. More than once. I feel pretty qualified to complain about the side effects of tamoxifen, even though I know it’s an integral player in the recurrence-prevention game. I know well that this drug is my best shot for keeping that infernal cancer beast from showing its ugly mug around here again. The National Cancer Institute says explains it, “As adjuvant therapy (treatment given after the primary treatment to increase the chances of a cure), tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. As treatment for metastatic breast cancer, the drug slows or stops the growth of cancer cells that are present in the body.” Great right? Yes. Definitely. But, as we all know, there is no free lunch, and tamoxifen comes with some heavy side effects.
At the risk of sounding like one of those annoying commercials that lists every side effect under the sun, here goes: increased chance of blood clots, increased risk of strokes, development of uterine cancer, and cataracts. But wait, there’s more: menopause-like symptoms such as mood swings, hot flashes, joint pain, and leg cramps. Not listed is the accelerated aging characterized by dry skin, loss of collagen, brown spots (aka “age spots”), and thinning hair. Because losing my rack isn’t enough, I also got thrown into chemically-induced menopause and became a brittle old woman decades before my time.
Not that I’m complaining.
Instead, I’m looking on the bright side: when I pop the little white pill every morning, I know exactly what I’m getting. No surprises. No mistaking a chewable fluoride pill for a powerful anti-cancer weapon.
Pride goeth
Posted: February 23, 2012 Filed under: drugs, Uncategorized | Tags: avoiding germs, chest cold, hand sanitizer, pride goeth before the fall, proverbs 16:18 11 Comments »“Pride goeth before destruction, and haughtiness before a fall.”
Proverbs 16:18. Heard it a million times, because I’m a prideful person. Ask any of my tennis buddies about me being at the net when a heavy hitter comes in fast to deal with a high, slow, floating ball. Common sense dictates that the player at the net back up, lest she get pegged at close range. I, however, prefer to stand my ground knowing full well that I’m a sitting duck. Seems too much like an admission of defeat to back up, and I’d rather get pegged than retreat. It’s stupid, I know. It’s dangerous, for sure. And yet, once dug in, I stay. Too proud to retreat. Somehow in my prideful, haughty brain, it makes more sense to get hit–hard and at close-range–than to back off.
Pride equals pain sometimes, but that’s the way I’m wired.
I was mighty prideful, and perhaps a bit haughty, about the fact that everyone in my house has been sick–two members of my family got the creeping crud twice–yet I remained healthy. Escaping unscathed from the bevy of germs that invaded my house for several weeks wasn’t easy, but I did it. And I was a bit smug about it, so I guess I should have been ready for the fall.
dailycomic.com
I hate being dependent on others.
I hate resting when I could be doing. Something. Anything.
playle.com
I really hate having my daily routine up-ended.
The tennis season has just started up again, and I’ve been making some serious progress in the gym lately. No to mention the colossal clean-up that’s been going on at home; closets organized, pantry emptied out & re-stocked, piles of debris chucked onto the recycling pile. This is no time for me to be sidelined.
Sore throat, fever, congestion, cough, and fatigue be gone! I’m done with you.
Tomorrow will be a better day.
talkless-saymore.com
In stitches
Posted: January 9, 2012 Filed under: drugs, pets | Tags: dog bites, psychological effects of breast cancer, PTSD 10 Comments »I had to have a few stitches in my leg 10 days ago. Didn’t write about it because it involved a bite from a dog owned by our BFF, and he (the BFF, not the dog; she’s female) felt bad enough about the fact that his dog bit me, and I didn’t want to rub it in. I’m all for charity, but it takes a backseat to my shamelessness at mining any and all events for a blog post.
So here we are. Full disclosure.
In hindsight, I know that the circumstances surrounding the dog bite should never have converged as they did. I should have known better. If only hindsight and “should haves” meant something in the real world, where dogs tussle and humans intervene. So it happened, I handled it, and life goes on. I still love the dog whose canines ripped my flesh thoroughly enough to expose the tissue underneath, and I know that she didn’t intend to hurt me. I’m just glad our sweet little piggie didn’t get tangled up in that whirling dervish of a dog fight.
Of course the brawl happened late at night, and not during regular business hours. Of course it happened when Trevor was out of town, so that if I did feel the need to go to the ER, arrangements would have to be made for my favorite girl, who’s pretty awesome and very independent, but not at 10:30 at night. Of course I put on a brave face and reassured said favorite girl that everything was fine, despite the unceasing burbling of blood from my gashed thigh. Of course the stitches on the left and the paw-shaped scratches and bruises on the right required me to sit out of tennis and the gym for a few days.
And of course, I had to take antibiotics.
The idea of getting back into the abx routine was worse than the wounds themselves, worse than the 4 lidocaine shots into the gash, and worse than the stitches. I just finished the last of the Augmentin last night–hallelujah! After 267 straight days of oral antibiotics for my post-mastectomy infection, you’d think a simple 10-day course of Augmentin would be easy peasey, but for me, not so much. Maybe it’s PTSD. Maybe it’s that my body has a heightened awareness of abx after the near-constant dosing last year. Maybe I’m just a big baby. Whatever the reason, facing those drugs twice a day was tough, if only for 10 days. I hope it’s a long, long time before I need antibiotics again.
So the stitches were scheduled to come out today, but after a quick peek my doc said nope, that wound looks way better but it’s not ready to be sans stitches. Gotta leave them in until Friday, just for good measure. Because of how deep the gash was and because it’s on my leg, which moves all the time because I’m not one for sitting still, there’s still a chance it could open up again. Better safe than sorry, right?
I’m ok with the stitches staying in another 5 days. I’m tough, and in general I’m a fan of conservative measures when it comes to my body’s healing. But I struggled to maintain my composure when my doc warned me that the gash is going to leave a scar.
No, I didn’t cry at the idea of a stitched-up gash marring my leg. I laughed — out loud — at the idea that a inch-long scar would freak me out or upset me. That little bitty scar is nothing compared to the miles of track already laid.
Digging deep
Posted: November 4, 2011 Filed under: breast cancer, drugs | Tags: Antibiotics, breast cancer, chicken pox, Harriet Beecher Stowe, inspirational quotes, mono, Phenergan, postaday2011, psychological effects of breast cancer, Taylor Swift, Zofran 8 Comments »The last week has been rather trying.
Ok, it’s pretty much sucked out loud.
This time last week I was puking like a freshman pledge at a fraternity party, and the fun didn’t stop until I dosed myself with Phenergan and Zofran and conked out for the night. Little did I know that that was a harbinger of what was to come.
The preventative course of antibiotics has quite simply kicked my ass. I’ve never been one to run from a fight, until now. I’m done. I’m out. Let the countdown begin so someone can drag my sorry carcass out of the ring.
I’ve spent the vast majority of this week in my bed. The entire week. This is rather unusual for a busybody like me, but there was no way around it. My body said, enough. I got up for the necessities: sustenance, teeth-brushing, and potty breaks. Oh, and to drive carpool. Gotta go get the kiddies! Yesterday I picked up the kids in my pajamas — a first for me. I know some moms who do that on a regular basis, but I had never once done it, and today may well be a repeat performance. One of the teachers in the pick-up line, an adorable & energetic kindergarten teacher, stuck her head in my car to say hi and giggled at me in my jammies. She said,”Oooh, I want your life.” I looked her straight in the eye and said, “No, you don’t.”
Trust me on that.
Never have I been laid so low by the workings of modern medicine. Not when I had chicken pox in grade school and had to miss the school carnival (a belated thank you to Rick Dodd for bringing me cotton candy from the event). Not when I had mono in middle school and thought I was near death. Not when I got my tonsils out in high school and would have slipped quietly out of this world if someone had just pulled the sheet over my head.
I have never felt this sick.
I seriously considered calling my dear, delightful doctor yesterday to say that I highly suspect the antibiotics are poisoning me.
My whole body hurts. My bones ache. My lower back feels like it’s being pulled in all directions. My eye sockets feel too big. My tummy is in serious turmoil. The back of my mouth feels like something died in it. My tongue feels fuzzy. My brain is switched off yet my head is spinning, and the idea of making a simple decision is overwhelming. Nothing sounds good, nothing tastes good, yet I’m convinced that there’s something out there that will make this all better. Fresh-squeezed orange juice? No. A grilled cheese sandwich with spicy mustard? Sorry. An angel food smoothie with extra antioxidants? Good try, but no. Macaroni & cheese? Hah. Yogurt with lots of blueberries? Puh-leeze.
The only thing that’s gonna help me in this dire case is time. As the sage Boy George once said, “Time, oh give me time.”
Time to heal. Time for the drugs to run their course. Time to patch up my desiccated digestive system. Time to get past this latest round of shittiness.
(I really hope it happens fast, too, because my favorite girl & I have tickets to see Taylor Swift tomorrow.)
It’s time to dig deep, to look to wiser women than myself, and to seek comfort from whatever source in which it may reside. Today it’s Harriet Beecher Stowe who speaks to me, whose words assure me that I can get through this:
“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”
I’m waiting.
They’re baaaack
Posted: October 31, 2011 Filed under: breast cancer, cancer fatigue, drugs | Tags: Bactrim, minocycline, oral antibiotics, post-surgery, postaday2011, text, Vancomycin 9 Comments »It’s Halloween, and what could be more terrifying (for me) than to find myself eyeball-to-eyeball with the dreaded oral antibiotics? Not much scares me after dealing with cancer and its many-tentacled aftereffects, but these drugs certainly do make me want to run screaming from the building. 
Bactrim & Minocycline, the drugs I dutifully swallowed twice a day every day for 267 days, are back. Just a quick 10-day course this time around, as a preventative measure following Thursday’s revision surgery. No big whoop, right?
Uh, not so much.
I gladly received two giant bags of IV antibiotics in the OR Thursday. Levaquin and Vancomycin are the old standbys, and they coursed through my veins Thursday morning like a herd of mighty stallions clearing the path of any wily mycobacterium that might be hanging around after last year’s post-mastectomy infection. IV abx don’t bother me one bit, but the oral ones give me the heebie-jeebies.
After puking my brains out all the livelong day after surgery, I was not ready to swallow those pills. I put it off as long as I could, and had to have a “come to Jesus” meeting with Trevor to make me get back onboard the abx train.
You would think that after taking these drugs for 267 days, a mere 10 days would be a piece of cake.
You would be wrong.
Something inside me seized up and said “Uh-uh, no way, not gonna do it.”
I couldn’t convince myself to start taking these drugs.
Trevor astutely pointed out that instead of seeing this short course as easy, my brain sees it as the equivalent of swimming the English Channel because I’ve used up my lifetime supply of mental and physical tolerance.
He’s clever that way.
I knew I had to take them, of course. I knew the risk of re-infection vastly outweighed the inconvenience of taking the drugs. But I also knew just how awful I was going to feel, and while my rational brain said take the drugs, my irrational self whined like a tired toddler way past naptime. 
Here we go again. 
One dose in, on Saturday, my tastebuds were already shot. I tried to savor one last glass of champagne, to toast surviving yet another surgery and to say salud to my improved shape. But the damage had been done, and my lifetime supply of physical tolerance was exhausted. Cue the nausea, the roiling tummy, the overall puniness, the malaise, and the distinct feeling that something died in my mouth. Nothing, and I mean nothing sounds good to me. Not even Halloween candy. And I really like candy. Especially Twizzlers.
I spent the weekend feeling sorry for myself and wondering how long it will take this time to get back to “normal.”
So far no sign of the elusive “normal.”
Macy sent me off to surgery with her best buds, Froggy and Baby Snoopy. They kept me company Thursday in the triage area while I awaited the arrival of my favorite surgeon and his pack of Sharpies. The nurses who took my vitals and started my IV thought it was so cute that my little girl sent her posse to look after me. I explained that she’s only 9 but she’s wise beyond her years.
Pedey the Weasel Dog kept me company all weekend and happily obliged my sedentary schedule. He’s really, really good at being lazy and laying low, and I’m trying to take a page out of his book.
He makes it look so easy.
Fever-free, finally?
Posted: August 31, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: Houston medical center, infectious disease, long-term antibiotics, Maria Pace-Wynters, post-mastectomy infection, psychological effects of breast cancer 7 Comments »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.
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. 
Crazy Lady’s sister
Posted: August 19, 2011 Filed under: breast cancer, drugs | Tags: crazy lady, xanax 3 Comments »Remember the Crazy Lady I ran into in the grocery store a while back? I think I met her sister today. She was a hot mess and put on quite the floor show. 
Because of the fire at the Walgreens around the corner from my house, the next-closest Walgreens is handling the overflow business. I was in the drive-through because I was too sweaty from tennis to go inside. Just a little public service from me to you. So the lady in the drive-through line next to me was the closest to the building, practically nose-to-nose with the pharmacist behind the window.
Apparently there was a mix-up with her prescription, and the conversation between her and the pharmacist got heated, fast. She wanted to talk to the pharmacist who usually helps her, at the store that’s now closed because of fire damage. The current pharmacist was patiently explaining that she wasn’t available; their work schedules are all akimbo because of both stores’ staff trying to work from the one store.
Crazy Lady’s sister wasn’t having any of it, would not listen to reason. She was mad and she didn’t care who knew about it. It seems there was a shortage on her drugs and there weren’t enough to make a complete month’s worth. They had 8 pills to give her, and she could pick the rest up later. That’s happened to me plenty of times. Instead of grumbling about a minor inconvenience — having to make another trip to the pharmacy to pick up the remaining drugs — she went nuts and was screaming at the pharmacist, through the glass.
Now I’m really intrigued.
She wanted the pharmacist on duty to call the pharmacist she usually deals with, and of course pharmacist on duty said no can do. Can you imagine being the pharmacist who’s off duty, getting a call from a co-worker about the Crazy Lady who’s screaming about her drugs?
When that didn’t work, Crazy Lady recited the litany of reasons she couldn’t make a second trip to pick up the rest of the drugs: she has a meeting to get to, people are waiting on her, she has deadlines, blah blah blah. As if the pharmacist cares. She advised the pharmacist to get on the phone, speedy quick, and find someone else who could give her the balance of her drugs. When the pharmacist on duty said sorry, we’re out, you have to wait for the next shipment, CL said she was going to go to the fire-damaged Walgreens and “beat on the doors until they let me in and give me my drugs.”
Wow.
I’m giving her a wide berth. Don’t want to be anywhere near her when she implodes.
As I completed my transaction, I heard CL screaming that is she doesn’t get her drugs, there will be hell to pay. She said, and I quote, “I need my goddam Xanax.”
Truer words have not been spoken.
If I wasn’t so scared of her and her craziness, I might have offered her one of mine. I keep a nice little stockpile, just in case. But like a rabid dog, it’s best to not make eye contact with Crazy Ladies.
I’m trying really hard…
Posted: August 17, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: cancer battle, post-mastectomy infection, Power Port, psychological effects of cancer, reconstruction fears 20 Comments »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.”
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