World Cancer Day & Stuart Scott

Today is World Cancer Day, and rather than rehashing my own cancer “journey” I’m thinking about Stuart Scott.

A longtime ESPN anchor, Scott was a familiar presence in my house. His wordsmithing appealed to me, as did his irreverancy. In a world populated by former jocks and professional windbags, Scott contributed a cool combination of intellectual breadth and liveliness. Scott’s colleague Dan Patrick once said about Scott that “he didn’t just push the envelope, he bulldozed the envelope.” I’m a fan of bulldozers.

Scott was diagnosed with appendix cancer in 2007. Yes, you read that right: appendix cancer. Weird and rare, there are an estimated 1,000 cases of appendix cancer in the United States annually, compared to nearly 300,000 cases of breast cancer every year in this country. Perhaps this is another reason I relate to Stuart Scott: between his appendix cancer and my post-mastectomy mycobacterium infection, we both faced the question of “who in the world contracts that??”

Stuart Scott wrote a book about his cancer “journey,” which explains his gladiator approach to confronting his disease. The cancer community is divided on the “battle” aspect of the cancer fight — some people love the idea of a cancer warrior while others are uncomfortable with the war metaphors — but one thing I know for sure: the cancer experience is a fiercely personal one, and no one has the right to tell another how to do it or which analogies to use.

espn.com

espn.com

I read an excerpt of Scott’s book and am hungry for more. He was a gym rat, like me, and he leaned heavily upon his workouts during treatment, both for physical strength and for mental health:

“I can’t tell you how important it felt to go from the chemo infusion center to the gym. There were patients at the infusion center who were gaunt and too weak to walk. I wanted to hug them. I wanted to work out for them. It took about fifteen minutes to get to the gym from the infusion center, but I felt like I was traveling a great distance: from the land of the sick to the land of the recovering. I’d work out three or four times a week, but the most important workout was the one right after chemo. It was like I was proving a point: While you kick my butt, cancer, I’m gonna kick yours.”

In thinking about the name of one of the drugs in his chemo cocktail, Scott realized “The medical name of the medicine is fluorouracil, but they call it 5-FU. That’s what it said, right there: 5-FU. All right, I thought. A sign. FU, cancer.”

FU cancer. Indeed.

Scott continues: “My return to the gym felt kind of spiritual. I wasn’t really supposed to run since I was still connected to the port that was giving me my medicine.  I looked down, and my eye caught the logo of the manufacturer of the machine I was on: LifeStyle. That word jumped out at me: Life. I thought back to the first thought I had when [diagnosed]: I’m going to die. But I was still here. And here I was, not forty-five minutes out of chemo, and I was in the gym, doing what I do. I started to run. What could be the harm? The disease wasn’t in control. I was.”

That sense of control is of epic importance in the cancer “journey.”

Scott explains it like this: “Mentally, I needed to be in that gym. I’d talk smack to cancer like Ali talked to his opponents. A third set of push-ups? Take that, cancer. Twenty full-out sprint pass patterns? Cancer, you ever run up against this? Some kicks and punches into the middle of the heavy bag after the elliptical? I got yer cancer right here! I needed to do that, not just to show my girls I was fighting for them, but also to show myself I had some control over the situation. ‘Cause cancer wants to take control from you. You’ve got to very purposefully stand your ground. That’s what going to the gym is to me. I decide, cancer.”

A few weeks ago I came across the late ESPN sportscaster’s speech about his cancer “journey” at the ESPY awards last summer. That speech is powerful. Here’s the link so you can check it out.

Scott was awarded the Jimmy V Award at last year’s ESPYs and joins an acclaimed list of courageous and inspirational people from various corners of the sports world. Perhaps his career as an on-camera personality gave him the extra flair that made him such an engaging speaker. Maybe that was just his personality. Either way, his speech is compelling.

The take-away message, for me, lie in these words from that speech:

“When you die, that does not mean that you lost to cancer. You beat cancer by how you live, why you live and in the manner in which you live.”

Stuart Scott taught me a huge and valuable lesson. He did die, but he did not lose. How he lived proves that. Today, on World Cancer Day, I honor Stuart Scott. While at the gym, I will think of his no-mercy approach. I will remember all the days in which I was that patient too weak to walk, and I will silently thank him for all the times he worked out in my stead. For all the times he went straight from chemo to the gym and said FU, cancer.

espn.com

espn.com


No end to the drug therapy

Misguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”

Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.

Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.

However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.

I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.

It’s never enough.

It’s never over.

While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.

Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.

My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.

The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.

All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?

It’s never enough.

It’s never over.Sad-face


Recovering

Yesterday was my first full day home after my hysterectomy, or The Great Clean-Out, as I like to refer to it. At the risk of jinxing myself, I’ll say I feel pretty good. Real good, considering what went down Monday morning.

In typical fashion, I watched a YouTube video of my surgery after the Clean-Out was complete. It’s fascinating and gross all at the same time. The way the tiny instruments saw away the ligaments connecting the reproductive organs to the body . . . super cool. vision-cart-da-vinci-siIt reminded me of “the claw” game at an arcade, but instead of procuring the goodies, “the claw” discards the junk I don’t want anymore. This instrument, about the size of a drinking straw, can chop through body parts and allow them to be removed through a small hole in the belly. Genius. And way better for the patient than conventional, open surgery. Way better, especially, for girls who have lived through a nosocomial infection.

I’ve got four incisions on my belly: three were for the surgical instruments and one for the camera. I had just woken up yesterday when I snapped this selfie, so the lines traversing my belly are from sleep. unnamed

I felt well enough yesterday to take my dog for a short walk, which we both enjoyed, and I expect we will take another lap today. I sat outside for a while and communed with nature. It was hot, but the sun felt good and the chirping birds and buzzing insects reminded me that life goes on.

My goal yesterday was to avoid taking any narcotics. Check. My goal today is to bathe.

We’re entering into the danger zone of my recovery, in which I feel better and am bored. That’s when I start getting crazy ideas, like “Oh, I’ll just wipe down the kitchen counters.” No. Just no. Step away from the sponge. I’m a terrible patient and am terribly impatient. Yes, I know: there are books to be read, movies to be watched, TV shows to be caught up on, but the days are long and my butt gets numb from so much sitting. So much doing nothing. I really stink at doing nothing.

Perhaps it’s time for some champagne.

 


World Cancer Day

Today is World Cancer Day. This year’s theme is debunking myths and erasing stigmas attached to cancer. While I’m all for the debunking and erasing, I’m not at all sure how to feel about cancer having its own day. At first blush, I thought: Woohoo! A day to celebrate! I’m always up for that. But then I thought, Wait: what exactly am I celebrating? The fact that I survived? No; too much emphasis on survival makes me uncomfortable, as if I’m tempting fate. The fact that there’s so much awareness and dialogue about cancer nowadays? No; I’m sick of talking about it and even more sick of thinking about it. The fact that I persevered despite a devastating illness and an even more dangerous nosocomial infection? No; I would have rather skipped the whole experience. Especially the infection part.

Not knowing exactly what to make of this day, I’ll focus on this:ConquerMountain

There’s a poster at my gym with this quote from Sir Edmund Hillary. I’m assuming it’s in reference to Mt Everest. I look at the poster when I’m on the VersaClimber — a cardio machine that at first seemed like an instrument of torture but now is part of my routine. Most times I have to close my eyes to get through my VersaClimber intervals (it’s pretty bad!). But when I’m not closing my eyes, I look at the poster and read Hillary’s words, and realize that indeed, we do conquer ourselves. Including the cancer.


In 30 years…

Yesterday walking out of yoga with my favorite girl, I was relaxed and refreshed and thoroughly enjoying the first day of spring break. On our way to the locker room, the woman walking ahead of us turned to compliment my girl on beginning yoga at such an early age. My girl beamed in her ineffable way and chatted politely with this woman while I, the eternal germophobe, washed my hands. My girl gave me a look that said, “Seriously, Mom, the only thing you touched was your own personal yoga mat, so why are you scrubbing your hands like that?” Such is life after a nosocomial infection.

My girl and the woman discussed their most-favorite and least-favorite yoga moves, and after a short debate on the wheel and the crow, the woman told us that she’s been doing yoga for 30 years. My girl’s eyes grew wide at this, and I imagined her picturing herself 30 years from now, a most experiences and tranquil yogi.

Rather than smiling at my girl’s fledgling love for yoga, I was struck by a moment of panic and a most unwelcome thought: Will I even be alive to do yoga in 30 years?

Not to be morbid, but this is life after cancer.

When I was diagnosed at age 40, my breast surgeon told me something that has stayed with me through the worst parts of fighting this disease. Worse than facing the reality of losing both breasts as I faced a bilateral mastectomy at a time when most of my peers were reclaiming their bodies after years of childbearing and breast-feeding. While many of my friends were undergoing elective cosmetic surgery to perfect their post-baby bodies, I instead was looking at pamphlets illustrated with grey-haired grandmotherly types considering their surgery options.

My sweet breast surgeon imparted a fact about my life after cancer: that I would spend more years fighting this disease–whether actively (swallowing an estrogen-blocking pill every morning for 5 or 10 years) or inactively (chasing fears of mets from my mind on a daily basis)–than I had been alive.

And that’s the best-case scenario, in which I actually live more than 40 years with this disease rather than succumbing to its terror, as is the case of some 40,000 women in the United States every year. Of course my sweet breast surgeon was thinking best-case scenario when she told me this, and at the time I had no earthly idea how much mental havoc this disease can wreak. Had my sweet surgeon predicted or warned me that on any given day, even years after I had allegedly slain the beast that is cancer, that beast would have the power to plant such thoughts in my head as that which brought me up short yesterday after yoga, I would have likely run screaming from the room.

Would I even be alive to do yoga in 30 years?

charmedyoga.com

charmedyoga.com

What kind of thought is that??? That, my friends, is the power of cancer. It can erase the calming, centering effects of yoga in a single bound. It can swipe the joy of the beginning of spring break in one fell swoop. It can plant a seed of recurring fear and doubt with the greatest of ease.

The Social Security Administration estimates that the average life expectancy for a female in the US these days is 85. Simple math tells me that best-case I’m looking at 45 years post-cancer. More years fighting it than years I’ve been alive. Even with low recurrence-rate predictors and stellar care from top-of-their class physicians and access to always-improving tools that monitor my cancer’s efforts to reinstate itself, the recurring fear and doubt prevail. Within two minutes of bidding my yoga instructor namaste, cancer had infiltrated my thoughts and led me to wonder what my chances are of being the grey-haired grandmotherly type rolling up my yoga mat and heading to class.

charmedyoga.com

charmedyoga.com

I know, I know, we residents of cancerland are supposed to think positive. We are advised by all manner of sources–both sought-after and unsolicited–to assume the best. We are told to visualize it and believe it and it will happen. We are told that what’s meant to be will be.

But that doesn’t stop the automatic response that cancer brings. I can think positive and assume the best and visualize and believe all I want. I can employ every cancer-fighting weapon from pharmaceuticals to superfoods. I can hope and wish and pray to the anti-cancer gods. But cancer will do whatever it damn well pleases, and if it wants to come back and rudely interrupt my life, it will. If cancer wants to cut short my plans of doing yoga for the next 30 years, it won’t think twice.

That, my friends, is the power of cancer.


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.


Elizabeth Lloyd: you’re an idiot

I’d use a more colorful name but she’d probably sue me. Like she’s suing an 11-year-old boy for throwing a baseball. In a dugout. At a Little League ball field, where presumably baseballs are thrown and sometimes not caught. But wait, if Elizabeth Lloyd has chosen to insert herself into the media, in her money-grubbing way, she’s a public figure, right? So I can call her whatever name I like and she has to take it. Perhaps I need to brush up on my libel knowledge, but in the meantime, I’m going to call her Asshat.

Here’s the story, in case you were paying attention to real news that actually matters and missed it: Asshat was at a Little League game in New Jersey two years ago, watching her son play, and was hit in the face by a ball. She was sitting on top of a picnic table next to the fenced dugout where a catcher, Matthew Migliaccio, was warming up his teammate, the pitcher. Migliaccio overthrew the ball and it hit Asshat in the face. According to the local newspaper, He ran over to her to ask if she was ok, and she told him she was fine. Says Matthew: “I went over to see if she was okay, and she said that she was fine and not to worry about it. About like three weeks after, she came and gave me a hug and she told me that it wasn’t my fault.” Asshat said to Matthew, “I know you didn’t do anything wrong.”

However, two years later — just days before the statute of limitations would expire — Asshat decides that errant ball was thrown “intentionally and recklessly” and she needs half a million dollars for it. WTH??

Asshat claims that Matthew assaulted and battered her.

WTH??

This claim is insulting to anyone who has truly been assaulted and/or battered. I’m sick.

So is Matthew. Poor baby was minding his own business, probably playing MW3 on the Playstation like the 13-year-old boy who lives at my house, when the doorbell rings and he is served papers. A 13-year-old child was served papers. Matthew said, “I think it’s pretty mean to sue someone after you told them that you knew it wasn’t their fault.”

Pretty mean indeed.

Matthew’s attorney, Anthony Pagano, says the case is bogus and the family will not settle with Asshat. “What are we gonna do, take his bike? He’s 11,” Pagano said.

Does this look like a malicious person intent on inflicting injury? Not hardly.

Fact: 11-year-old kids overthrow balls. Fact: 11-year-old kids do not always catch overthrown balls. Fact: Elizabeth Lloyd is an asshat.

The overthrown ball traveled more than 60 feet before it hit Asshat, who was sitting 5 feet from the fenced bullpen. Reports conclude that while Matthew is an avid gamer, playing on 3 different teams, he was 11 years old at the time of the “assault” and didn’t exactly have a cannon of an arm like one sees in the major league. Matthew’s father says ”It’s absurd to expect every 11-year-old to throw the ball on target. Everyone knows you’ve got to watch out. You assume some risk when you go out to a field. That’s just part of being at a game.”

Hear hear. Guess what, Asshat — life is risky; get a helmet.

Apparently Asshat’s husband is an asshat, too, and he’s also suing Matthew, for the loss of “services, society, and consortium” of his wife. I guess that means he’s a shameless money-grubber, too, and Mr & Mrs Asshat are demanding a jury trial. The suit claims Matthew’s actions were negligent and careless through ”engaging in inappropriate physical and/or sporting activity” near Mrs Asshat. She claims she continues to suffer “pain and anguish, incur medical expenses and has been unable to carry out her usual duties and activities.”
I’d like to show Mrs Asshat some pictures of the hole in my chest wall after a post-mastectomy infection wreaked havoc on my body. I’d like to explain to her what real pain and anguish is all about. I’d like to enumerate the ways in which a month of hospitalization from that infection screwed up my life and prevented me from being able to carry out my usual duties and activities. I’d like to tell her what it feels like to be on powerful, gut-wrenching antibiotics for nearly one full year, so that she gains a scintilla of an idea of what it means to really suffer. I’d like to lament the fact that that damned infection caused me to undergo a heinous reconstruction that will likely never achieve the results I want and deserve, despite everyone’s best efforts. I’d like to show her what it means to live the rest of one’s life scarred, scared, and dissatisfied. I’m pretty sure there would be a long line of cancer victims with similar stories to share. But do we sue the hospital for contracting infections? Do we sue the doctors because something went wrong? Do we sue the hospital personnel for not better protecting us from possible harm? Do we sue cancer for afflicting us? Nope, we chalk it up to rotten luck, wrong-place-wrong-time, shit happens and get on with our lives.
I’ve spent a lot of time at Little League ball fields in the last 8 years since my kid started playing. I’ve been hit by a baseball and I’ve been nailed by a tennis ball hit by a grown-up. It hurts, but you get over it and move on. You don’t sue the kid who threw the ball. Sheesh. Even an Asshat should know that.
Maybe Matthew’s family should sue Mr & Mrs Asshat because she intentionally put her face in the way of his ball. Or maybe they should sue the Asshats because she was willfully and intentionally misusing the picnic table. Asshat’s ass should have been on the bench, not on the table. She was asking for it, really.
My blogging idol at People I Want to Punch in the Throat wrote an open letter to Asshat. Read it. She’s much more adept than I at saying what she really thinks (I know, shocking, right, that someone would write more openly and with less of a filter than I?). I hope Mr & Mrs Asshat read it, too.

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.

google.com

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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At the ballpark, again

Last summer was pretty bad for me and my family. It started innocently enough, with a bilateral mastectomy at age 40 on May 13th, and while I healed quickly and nicely from that, it all went downhill fast.

Just after my 41st birthday, I got a nasty post-surgery infection. No one saw it coming, and to say it took us all by surprise would be a gross understatement. The odds of contracting a nosocomial infection are not small, but my infection is somewhat rare, quite wily, and super slow to treat. In the scope of inconvenient infections, I won the lottery.

Last night was the first game of the All Star tournament for Payton’s team–something I missed entirely last summer. Being present last night to watch my boy do what he does best with his team of like-minded and uber-talented buddies was one of the simplest yet deepest thrills of all time. We take a lot of things for granted in this life of ours, and being able to sit on metal bleachers in the Texas heat in June to watch youth baseball is one of those things. I’ve sat through thousands of games for my little ball player, and hardly thought twice about it beyond the random, mundane thoughts associated with this endeavor: who are we “versing” (as our catcher, #10 Carl says)? Where is Payton in the line-up? Are we on the shady side of the field? Did I remember my stadium seat? How many times will Macy hit the concession stand? How many pieces of bubble gum does Pay have in his mouth at once?

Those are the thoughts that traverse my brain during a game, along with the usual baseball stuff: What’s the run rule in this tournament?; How did we fare against this team last time we met? If the ball hits the bat then hits the batter, he’s out, right? Rules and regulations course through my head as I follow the many games my boy has played.

Last night was different, though. As I was ready to walk out the door, our bestie Ed reminded me that I’ve come a long way since this time last year. Several of the parents on our team remarked at the park that it’s nice to have me there this year. A couple of the coaches said something about having missed me and my big mouth last summer; once a cheerleader, always a cheerleader.

I have come a long way since last summer, and watching my kid play ball is something to be savored, something to most definitely not take for granted. The metal bleachers, the roar of the crowd, the (gross) smell of hot dogs, the infield dirt blowing in my eyes…every bit of it is special to me on a whole ‘nother level.

Last night also marked the first time a newspaper reporter has covered the game, and seeing my boy’s name in print in association with his rock-star team’s blowout and his personal success is something I’ll be savoring for a while. Before cancer came into my life, I would have enjoyed reading the article, and likely would have forwarded it to our nearest & dearest, but this time, I’m carrying the feeling of that article along with me, inside my heart, in that little space where the gratitude lies.

I was flipping through my old Caring Bridge blog, and happened upon this entry, which seems even more prescient a year later. I wrote this on the morning of my mastectomy, before leaving for the hospital. No doubt I was antsy, preoccupied, and ready to get the show on the road that morning. It seems appropriate to reprint it today, in light of the theme of today’s blog.

I realize that when cancer comes into one’s life it disrupts everything and changes “the normal” forever. Dr Dempsey, my superstar breast surgeon, told me you  no longer schedule cancer around your life, you schedule your life around your cancer. Life takes a backseat to war. 

 With cancer, I join a club that I never signed up for and for which I never wanted to become a member. 

No matter, I now have a new normal. The new normal is all about taking care of what’s most important. We hear this all the time, but when you really put it into play in your own life, you know exactly what it means. For me, it means facing this beast head on and telling the bastard repeatedly that it doesn’t stand a chance. It means never once, not even once, considering that this cancer will win. It’s not even in the game. 

It also  means all the pithy stuff you hear about, like savor every day, make the most our of whatever you’ve got. That’s also true. For me it means truly embracing and enjoying my kids and my family, and letting my friends into my life — warts & all — on a whole new level. Y’all may well see my house a mess, which doesn’t happen much. You may see me in a grumpy mood (ok, you’ve seen that, esp on the tennis court!). You  may see me just a teensy bit vulnerable, but only for a short time so don’t expect a repeat performance. No matter what, there is a new normal, and I’m all over it.


Summertime

Summertime, and the living is easy. Sam Cooke said it, well, sang it actually, a long time ago. The fish were jumpin’ and the cotton was high. The girl he was singing to had a daddy who was rich and a mama who was good-looking. All was right in Sam’s world.

Well, the living is easy all right. No alarms waking me up before I’m ready, no lunches to pack. Payton’s lunch is easy: sandwich, bag of baked chips, string cheese, Rice Krispie treat, and a drink. No lunch box, no ice pack — he’s too cool for that. Macy, on the other hand, is quite particular about her lunch, requiring 5 different things, some of which must be washed & chopped and placed into small tupperware. She does at least take the same thing every single day, much like her mama did as a schoolgirl. I had a homemade egg salad sandwich on wheat bread every day of my schoolgirl life, and didn’t care one lick that the other kids thought the egg salad looked gross and the brown bread looked weird. They could have their stick-to-the-roof-of-your-mouth Wonder bread PB&J any day. I was perfectly happy with my gross-looking egg salad on weird-looking bread.

So no lunches to pack, yea. No mountain of school paperwork to wade through, only to find that other than glancing at the grades at the top of the completed work, there’s not a single thing in that mountain that really matters. No racing the clock to get out of bed, gobble down breakfast, get dressed, and get out the door. No meanie mom enforcing a highly unpopular bedtime so the little darlings don’t act like feral hogs in the a.m. Last but not least, no school projects. Oh, how I despise the projects. After 18 years of living with the original slacker student, who did minimal work and gasp! even skipped school projects altogether yet made good grades and somehow managed to become a contributing & successful member of society, my opinion on school projects has definitely changed. Changed to hatred, that is. They’re messy, time-consuming, inane, and require ME to go to Hobby Lobby AND help with said project when I could be playing tennis.

Ok, rant is over.

I certainly hope I didn’t offend any teachers out there. If I did, please direct your hate mail to my husband, the original slacker student. It may take him a few days to reply, because he’s busy running a software company. I’m not sure he could have risen to such heights and attained 2 graduate degrees without that pivotal diorama he made in 3rd grade at Jenks Elementary.

Ok, now my rant is over.

So we are blessedly free of the strict schedule imposed by the Fort Bend Independent School District, and most thankfully free of the blasted school projects. We can go where we want to go when we want to go there, stay up late, and eat lunch when we please. All that sounds great, right?

Except for one tiny detail: I don’t do well with unstructured time. Remember me, the busy-body? I don’t blossom with a lot of downtime. It’s day 3 of summer, and I’m already feeling a little itchy, a little twitchy. As much as I dislike the hustle & bustle of the imposed school schedule, it does keep us on track. And I like that. I need that. I would have been great in the army.

Lots of people enjoy their downtime and get into being lazy. For me, laziness makes me feel icky. I really like having a to-do list every day and relish the feeling of being productive. Some people were laughing at me that on the first day of summer, I cleaned out the garage, did 4 loads of laundry, vacuumed the entire downstairs, and bagged up discarded clothes for donation. Before lunchtime.

Now that my kids are a little older and a bit more independent, summer isn’t as stressful because I can still get my stuff done without having to watch them every second. The ever-present possibility of a toddler finger in a light switch cramps my style and interferes with me crossing things off my to-do list. With the luxury of semi-independent children, I’m trying to relax more this summer. That, and the burning desire to suck every drop of summer this year, since last summer was such a bust.

Last summer, I was not only recovering from a bilateral mastectomy but also playing hostess with the mostess to a nasty, long-staying bacteria that exploded into a messy, hard-t0-diagnose-and-even-harder-to-eradicate infection. I spent some extra time in the hospital, multiple times and multiple hospitals, and had a few extra surgeries. I weathered the ups & downs of being an impatient patient, and learned the hard, hard lesson that no matter how nicely I treat my body, it can and will betray me. As my sweet mama would have said, “That is rude, crude, and socially unacceptable.”

Last summer I missed out on a lot, thanks to Mr. Mycobacterium. This summer is going to be different. I’m going to spend some idle time, and hopefully learn to like it. I’m going to float in the pool with my kids and my crazy dog, and not worry about the laundry piling up or the dishwasher needing to be emptied. I’m going to teach my kids to cook, and not stress over the messy kitchen. I’m going to drag them away from the TV and computer games and into the museum district, and not get discouraged when they complain about how boring it is.

This summer, I’m going to relish being home instead of in a hospital, staring at this: 

I’m going to delight in the fact that I don’t have any of these attached to me:

I’m going to do a little dance about the fact that my sling bag isn’t carrying any of those icky things that are no longer attached to me:

and that I no longer need a collection of these to catch the collection of gunk that accumulates in those things to which I’m not longer tethered:

I’m going to breathe a sigh of relief that I don’t have any of these stuck to me:

I’m going to offer up a special nod to the fates that I won’t be going here:

to get more of this:

However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.