Good-bye, 4th grade! Adios, 7th grade!
It’s the last day of school in our little corner of the world, and there was much smiling and cavorting this morning in my house. Forget the Queen’s upcoming Jubilee or the Summer Olympics– there’s no celebration in the world that matches the unbridled joy of the last day of school. The entire summer, with all its laziness and promise, awaits.The official countdown has been on for days, of course, with my little darlings and our best-friend/teacher-at-the-jail-school quizzing each other constantly to make sure each one of the gleeful trio knows just how many days of imprisonment were left in the 2012 school year. They do this every year, snickering to themselves as we approach single-digit days left, while I roll my eyes and wonder how I’m going to amuse these monkeys all summer.
This is the first year that I haven’t approached the end of school with a bit of dread. I’m quite happy about that. Usually, I get a little panicky at the idea of 10 weeks of unscheduled sloth. I’m a creature of habit who likes a routine, and summer is anything but structured.
This year, however, I don’t mind the idea of unstructured time. In fact, it’s probably a really good thing — for all of us.
I’ll keep some of the same routines — swallowing my daily dose of Tamoxifen with my cup of coffee, watering plants, going to the gym — while letting the rest of them go. No alarm clocks other than a hungry little piggie requesting breakfast, no lunches to pack, no carpool to drive.
I’ll make my kids groan by insisting they spend a little time every day reading. Macy is finishing up this series, and we’ll soon be on the hunt for the next set of great books. Payton will pretend he’s annoyed by the daily reading time but will soon be swept away by this book or the scuttlebutt about whether there will be another installation in this series. Hopefully I’ll get some reading time in, too, as my list of books to read is long.
We’re kicking off the summer tonight with a celebration of with our sweet friends and their newly minted high school graduate. Corks will be flying and tissues will be passed as we toast this charming young lady who has nothing but great things ahead of her. Tomorrow will be yet another celebration as I turn a year older and celebrate the fact that I’m alive & kicking. It’ll be a total birthday weekend, followed by the first trip of the summer.
We’ll be heading to the Hill Country to enjoy (?) the sights & sounds of Schlitterbahn. My kids have been wanting to do this for years, but being the stick-in-the-mud-amusement-park-hating kind of mom that I am, I’ve always deferred. This year, it’s on! Thanks to some skillful peer pressure exerted by a certain wily trio of suburban at-home moms, my kids will finally get to experience the thrills & chills of this famed waterpark. The crowds! The onslaught of strangers’ kids! The vast bodies of communal water! Oh, joy.
In a couple of weeks my brother and his two kids will be heading to the great state of Texas from the Garden State. We’ll have five days of sun & fun and cousin immersion. What a great way to get the summer started! The day they leave, I leave for my annual trip with the Duke girls. This year we’re going back to Captiva Island, in Florida, for some kid-free R&R.
At some point in the near future we hope to head to Corpus Christi to see our dear friends’ new home. We miss them every day of the week, so getting to see their new house & pool and catch up on some long-overdue visiting will be fun, fun, fun.
Hopefully we’ll be making a return trip to the lovely Tyler, Texas, in July. Tyler is the site of the Texas East Little League All Stars tournament, to which my slugger’s team has earned a trip the last two years. Making it a three-peat would be a great way to close out the Little League experience.
We’ll be taking our annual trip to Salisbury Beach, of course. This trip is eagerly anticipated all year long, and once school ends, the countdown to the beach trip begins in earnest. Escaping the Texas heat and hanging on the beach with our second family is the best part of summer. I’ll be sure to post dispatches from the East Coast on how low the humidity is and how many lobsters we consume, don’t worry.
It’s shaping up to be a great summer.
Never one to resist a challenge, I happily undertook Jelebelle’s blog prompt this week, which was inspired by Renn’s blog prompt last week. Jelebelle took Renn’s idea and ran with it, challenging us to “post a photo or self portrait or other form of visual art … of yourself that describes who you have been within the last six months.”
I’m especially intrigued by the “who you have been within the last six months” part. Some days I feel a little Sybil-ish, with many different versions of me. There’s the warrior girl who pummeled breast cancer, the tough-lovin’-but soft-on-the-inside mama, the relentless chaser of the next level of strength in the gym, the hard-core-run-down-every-single-ball tennis chick, the at-home mom who respects the commitment to domesticity while being bored silly by it, the bookworm who can’t dive into the latest good read until the kitchen is spotless, the voracious detail-seeker who wants to know it all yet remembers precious little.
And that’s just what comes to mind at first blush.
I spent several days pondering this idea of who I have been in the last half-year. I’d think about it while at the gym, while watering my newly planted flowers, while making yet another sack lunch for my little darlings, while driving across our sleepy suburb mid-day with the top down and the wind whipping my hair into a frenzied mess. My inner warrior wanted the answer to Jelebelle’s question to be “I’m a badass slayer of cancer and bad grammar.” The softer side of me, which I usually try to tamp down at all costs, wanted the answer to be “I’m kind and patient and willing to see the good in everyone, no matter how moronic or mean-spirited they really are.” The chaser girl wanted the answer to be “I’m a beast in the gym who can’t get enough reps and I pity the fool who gets in my way.” The tennis chick wanted the answer to be “I’m a steady player who will wear you down in a war of attrition.” The at-home mom wanted the answer to be “I’ll have to answer that question after I fold 10 loads of laundry, put a delicious & nutritious meal on the table while a homemade cake fills the kitchen with the heavenly aroma of fresh-baked love, tend to the animals, dust the ceiling fan blades, and oversee the winning science fair project.” The bookworm wanted the answer to be, “Can’t talk, reading.” And the detail-seeker wanted the answer to be widely researched, fact-checked, and methodically presented.
Rather a tall order, right?
So in the end, after much soul-searching and reviewing of the events of the last six months, my answer to Jelebelle’s question of who I have been is this:
I’ve been a happy girl who is learning to love this post-cancer life. Becoming a happy girl post-cancer has been a long time coming. Like every diagnosis, mine was hard to hear and even harder to absorb. Being handed a deadly disease at age 40 is cruel, but being mangled and diminished by the disease is even worse. Once through the hard part (whichever part that is), the kernel of fear remains firmly implanted in one’s brain, and the realization that cancer may be gone but can never be forgotten is a heavy reality. It can be hard to be happy after all the damage that cancer inflicts.
While mine may seem a simple answer to a complex question, the simplicity of being a happy girl is actually rather complicated. There’s the strange dichotomy between being pissed off at the universe for randomly choosing me to be the one in eight women diagnosed with breast cancer, and being immensely grateful that my cancer wasn’t as awful as it could have been. There’s a continental divide between having breast cancer ruin my life and having it push me to become stronger… better…more grateful. I’m alternately wrecked by what cancer has done to my body and my psyche and determined to ensure it will not defeat me.
My cancer “journey” has not exactly been a sensible trip from point A to point B; I rather took the scenic route. Dear Dr Dempsey, breast surgeon extraordinaire, inducted me into her “One-Percent Club,” which describes my “journey” so well: of all the women diagnosed with breast cancer in her practice, there is one percent for whom anything that can go wrong will go wrong. The select few in this club will encounter worst-case scenarios that will blow the roof off of the established medical protocol. We are the women she and her colleagues discuss in tones of “WTH???” and the women whose stories she tells to her other patients in order to reassure them that their situation really isn’t so bad. It’s a privilege and an honor to be part of the One-Percenter (yuk, yuk!). We’re committed to serving as a cautionary tale to others whose only fault in life was to be born a woman with a pair of breasts. We are a group that is small but mighty, and we are endlessly stubborn in the face of this wretched disease and its many-tentacled complications. We’ve learned the hard way that our bout with cancer may be done but it’s never over. And this One-Percenter has spent the last six months becoming happy.
It’s a quiet Sunday morning, and I’m alone with my thoughts. I’m up earlier than I might have chosen, thanks to one hungry little piggy. After a Friday night of interrupted sleep and a Saturday full of tennis, errands, swimming laps and a late dinner with a favorite cousin, I may well have stayed in bed a while. However, savoring a slumbering house amidst hte sunlight pouring in through the trees and hearing the sweet sound of birdsong while sipping a cup of strong coffee is better than sleeping in.
Plus it gives me time to read my book, Shantaram, which I’ve been dying to dive into but haven’t found the time. It’s been likened to Cutting for Stone, one of my all-time most favorite books ever. If it’s half as good as CFS, I’ll be one happy reader.
Quick synopsis of Shantaram: Mr Lindsay, our protagonist, has escaped from an Australian prison and fled to Bombay. There he meets Prabaker, a native of the slums who renames Lindsay “Lin” and becomes his always-smiling, eternally joyful guide to the big city. Lin falls for Karla, a mysterious woman with sea-green eyes, and pursues her amidst the backdrop of a lively bar called Leopold’s. Lin is “a magnet for trouble, a soldier of fortune, and a picaresque hero” who delves into the black-market world of false documents. I’m not very far into the 944 pages of adventure, but am intrigued.
As I settled in to read this fine morning, I came across an especially well-written passage, which brought me up short. Lin is talking to his new friend Didier in the bar about some of the more unsavory patrons among them. In an effort to avoid being overheard by the bad guys, Didier was “speaking out of the corner of his mouth, like a prisoner under the eyes of the wardens.”
A nice metaphor, for sure, but it gets better:
“In Australian prisons, that whispering technique is known as side-valving. The expression spoke itself clearly in my mind and, together with Didier’s mannerism, the words put me back in a prison cell. I could smell the cheap disinfectant, hear the metal hiss of the keys, and feel the sweating stone under my fingertips. Flashbacks are common to ex-prisoners, cops, soldiers, ambulance drivers, fire fighters, and others who see and experience trauma. Sometimes the flashback is so sudden, and so inappropriate to the surrounding circumstance, that the only sane reaction is foolish, uncontrollable laughter.”
I had a flashback myself last week, and while it didn’t lead me to foolish, uncontrollable laughter, it almost set off a full-blown PTSD attack. I was rushing out the door to get one kid to school and head to the gym, my usual weekday routine. I’m a stickler for taking my own cup to the gym instead of using the styrofoam ones provided. As if our bulging landfills need another cup tossed on the heap. In my haste to get out the door, I grabbed a straw for my cup and scooted out into the garage and into the car. It wasn’t until I was into my workout and gulping water like a crazy person that I realized the new batch of straws I’d bought were bendy straws.
Big deal, right? Bendy straws can be useful, especially if one is reclining while drinking. Or if, say, one is hospitalized for countless days after a post-mastectomy infection. Yessiree, folks, a simple, innocent bendy straw sent me straight from my normal routine of a morning workout directly to the days of being captive in a hospital bed, held hostage by a nasty mycobacterium. Just as Lin was instantly transported from a bar in Bombay to the hated Australian prison cell, I was back in the hospital bed, raging with fever and sick, sick, sick while a nasty bug set up shop under my newly implanted tissue expander. A one-way ticket to Crazy Town in hand, I took the express train down (bad) memory lane.
I wasn’t even thinking about infections, hospitals, antibiotics, or breast cancer when the flashback struck, but I suppose that’s the nature of flashbacks. Triggered by sights, smells, or sounds or, in my case, straws, flashbacks take over and not only interrupt our present business but also disrupt the rest of the day with their nasty after-effects. Interesting how bad memories are just as powerful as good ones. Unlike the good memories, which fill us with warmth and comfort, bad memories suffuse our souls with fear, anxiety, and panic.
The bendy straw that triggered this particular flashback went straight into the trash, and I tried my best to go about my day like a normal person. Finish the workout, chit-chat with my fellow gym rats, reserve a tennis court on the way out, get in the car, drive to the grocery store, fill my cart, unload the loot, take a shower, pick up kids, supervise homework, prepare dinner, clean the kitchen. From the outside, I looked like a normal person doing everyday tasks, but inside I was anything but normal and was once again a cancer patient, fighting my way through uncertainty, confusion, and balls-out fear. In that moment, cancer made me its bitch, and there wasn’t a single thing I could do about it. The only thing keeping me from a total meltdown was knowing that this flashback would pass, that the terror brought on by a simple bendy straw was fleeting.
But as I talked myself off the ledge with soothing reminders that this too shall pass, I know just as certainly that while the terror will pass, it will also return. Again and again, this flashback will haunt me. Perhaps each time it becomes less rapacious, less capable of felling me in one swift motion, but it will return.
“You can’t run away from trouble. There ain’t no place that far.” ~Uncle Remus
Well, not officially, but the initial studies sure look promising.
Front-page news today in Houston declares that researchers at M.D. Anderson Cancer Center right here in my fine city have good things to say about results from an experimental vaccine. The researchers are hailing the potential vaccine as “a promising developement in an emerging field in cancer care.”
Sounds mighty good to me.
Much has been written on the blogosphere about finding a cure — or, more accurately, the utter lack of progress in finding a cure — for this disease that fells one in eight women in the United States each year. The statistics are scary, and you can’t swing a cat without hitting someone who’s been touched by breast cancer. And by “touched by” I mean gobsmacked by. It’s a vicious, insidious, relentless disease, and in the decades of research, precious little progress has been made in finding a way to eradicate breast cancer.
All of that could change, however, with this potential vaccine.
Its focus is significantly reducing breast cancer recurrence. So it won’t eradicate the disease itself, but may (hopefully, please please please, fingers crossed, with sugar and a cherry on top) prevent women who have had BC from suffering a recurrence. Once BC comes back, no matter what stage it initially was or how effective the treatments were, you proceed straight to Stage IV and are considered incurable. That’s not to say the cancer can’t be managed, because it can, but it will never be cured. And therein lies the promise of this new potential vaccine.
I’ve gotten to know many Stage IV BC gals in the blogosphere, and their struggle is rough, to say the least. Ongoing treatment, escalating side-effects and financial burdens, and hopelessness are common in their fight. Not to mention mortality. Up front and in your face with Stage IV BC is mortality, in sharper focus and with a shorter shelf-life than ever imagined.
As one of the “lucky ones” in the cancer world considering my type of BC is lazy, slow-growing, and non-aggressive (touch wood here for good measure), I have a low recurrence rate. At least according to the charts and graphs and stats. That doesn’t mean I don’t think about it every single day, fear it and dread it. Even though I’m “lucky” and for all intents & purposes my cancer is gone, as I’ve learned from the brave cancerchicks who’ve gone boldly into the night before me, it’s never over, and the fear of recurrence is always there.
That’s where Dr Elizabeth Mittendorf comes in. She’s a professor of oncology at M.D. Anderson and this study’s chief investigator. She says that cancer researchers such as herself are “in the dawn of a new era” as they manipulate the immune system to recognize cancer cells and prevent or treat the disease.
The potential vaccine, called AE37, trains the body’s immune system to attack the infamous HER2 protein, which helps tumors grow and which is present in the vast majority of BC. One of the most important factors in a BC diagnosis is whether the cancer is HER2 positive or HER2 negative. Upon diagnosis, one waits to hear that HER2 status. HER2 positive breast cancers tend to be more aggressive and harder to treat. The hope with AE37 is that the proteins that make up HER2 will be taken down. Dr Mittendorf says, ”If some rogue tumor cell is floating around, AE37 can recognize it and take care of it before it can settle into bone or other parts of the body. It’ll teach the T cells to recognize that HER2 protein. So the thought would be that if the T cells were educated in this way, if the tumor cell were to come back, the immune system could identify it, attack it and destroy it before the patient would have, as we see, a measurable recurrence.”
The beauty of AE37 is that it may be helpful in fighting other types of cancer as well. Because HER2 proteins occur in prostate, ovarian, and gastric cancers as well as in breast cancers, AE37 has a lot of potential across the board. For “lucky” breast cancer gals who are HER2 negative, like me, the potential vaccine may still be helpful. Dr Mittendorf is excited that the vaccine seems to reduce the risk of recurrent breast cancer in women who had both high and low levels of HER2. Mittendorf and her team studied 201 patients whose average age was 50 and who had previously had BC but who are currently cancer-free. Half of them received the vaccine, while the other half did not, and the initial results are encouraging. Mittendorf says, ”We projected that breast cancer would come back for 10.3 percent of the women who got the vaccine compared with 18 percent of the women who had not been vaccinated. That translates to a 43 percent reduced risk of recurrent breast cancer.”
While AE37 won’t replace the traditional treatments — mastectomy, chemotherapy, and radiation — it could become part of standard care and would likely work in combination with the weapons currently used against the disease. The vaccine is given once a month for 6 months and then every 6 months for 3 years. While AE37 needs some fine-tuning, and a longer-term study would yield more information into its potential, this is very good, extremely hopeful news for those of us in the BC trenches. The fact that it may be able to cut recurrence rates nearly in half makes me giddy. The fact that this important research is taking place in my city is an added bonus. Kinda makes me want to run on down to Anderson and deliver some fresh-baked cookies to Mittendorf and her team. Just a little token of my appreciation for all their hard work. Should I make chocolate chip or snickerdoodles? In this case, I think I’ll make both.
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.”
I have strict instructions from my youngest child to lounge in bed on this day, awaiting the fete that my family has prepared for me. I’m not much of a lounger, but I am today. My coffee is delivered while I prop myself up on a slew of pillows, and I resist the urge to leap out of bed and hit the ground running, as I do on most days. I savor the coffee knowing there is no long list of things to accomplish. No lunches to pack, no permission slips to sign, no laundry to run, no carpool to drive. Today is for relaxing.
My favorite girl rushes back into the bedroom with a coaster for my coffee mug. She grabbed it out of the drawer that holds the snarky cocktail napkins and bar accessories in an effort to bring some luxury and festivity to my morning coffee. I wonder if she read it before bringing it to me.
I can hear the preparations taking place in the next room, and I await the unveiling of the day’s bounty. As I smile at the fact that my favorite girl has orchestrated a production to celebrate me, I have a revelation. It’s a big one, an important one. I might even call it a watershed moment, which I much prefer to the more popular, Oprah-spawned “aha moment.”
The kernel for this watershed moment germinated this past week. As I enjoyed my usual yummy green curry at the favorite Thai place at which a group of my best girls gather occasionally for lunch, the topic of Mother’s Day came up, and a discussion ensued. Everyone discussed their plans for the upcoming holiday, and I noticed something remarkable. In talking about this holiday, which has typically been a mighty hard day for me absent my own sweet mama, I wasn’t plagued by a sense of dread.
Could it be? Was it really happening? At lost last, after 7 years without my mom, was the pain of Mother’s Day easing?
When it was my turn to talk about plans for the big day, my dear therapist friend at the table began explaining to the others that it’s a hard day for me. I love having my own in-house counsel. Our two families have spent the last few Mother’s Days together, celebrating poolside with delicious food cooked by her hubs and copious glasses of bubbly poured by mine. She and I have plumbed the depths of the dichotomy of mourning the loss of my mom while trying to enjoy the day as a mom. Tricky business, that.
In the midst of this impromptu therapy session, another friend piped up with a most honest and very good question: instead of being sad about your mom, what about being happy about your kids? Can you focus on what you have, instead of on what you’ve lost?
Why didn’t I think of that?
My sweet mama would approve of this idea, wholeheartedly. In fact, knowing that she’d be so bummed about and would feel responsible for me being sad and dreading Mother’s Day has made the day all the more difficult. I know I should be happy. I know I should enjoy my beautiful, funny, charming, challenging, and amazing kiddos on this day, especially. But missing her, wishing she were still here, and raging against the wretched system that steals her from me makes it hard to do that. Alcohol helps. Lots of it. Preferably champagne. But even with a bottomless glass of bubbly, this day has always been a tricky course to navigate.
Hearing my sweet friend ask such a simple and innocent question, however, changed everything. Instead of gnashing my teeth at the Kay Jeweler commercials and shaking my fist at the festive tents full of flowers and balloons and sweets popping up in the grocery store parking lots, I felt a sense of peacefulness. A subdued calm infuses me this Mother’s Day. I’m not going to go so far as to say that a sense of celebration reigns, but I’m getting there. The fact that I feel subdued calm instead of outright rage is progress, people, major progress.
While it may sound simple to some to simply shift the focus from what you’re missing to what you have, I offer this: losing someone you love, particularly to a cruel and powerful disease, makes it hard to think straight. Losing someone you love makes it hard to put one foot in front of the other and soldier on through life, even if that’s what you really want to do. Losing someone you love dampens even the most festive of occasions. Even though I look lovingly at the faces at the table for the Mother’s Day feast, I’m thinking of the one place that’s unoccupied, the one party guest who’s missing. Though I’m surrounded by the people I love the most, spending a day in exactly the way I want, and while I have a bazillion things for which I am grateful, sometimes the one thing I’m not grateful for manages to supersede everything else.
But not anymore.
Today the tide has shifted and the planets are aligned. Today the bountiful sunshine that radiates on this mid-May Texas day reaches all the way into my heart and warms my battered soul. Today I will bask in the love and good wishes coming my way from my nuclear family and my extended family of close friends. Today I will finally enjoy Mother’s Day. I will focus on what I have, not what I’ve lost.
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.
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.
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.
The literary world suffered a blow today with the news that beloved children’s book author & illustrator Maurice Sendak is dead. Insert sad face here.
I’m a big fan of Sendak, always have been. Long before I became a parent, I had an affinity for children’s books. Years in advance of adding a crib, glider rocker, and Diaper Genie to my decor, I had an extensive library of children’s books. Even if I’d never had kids, I’d still have kid books. One of my most prized possessions is a set of four teeny, tiny books by Sendak. “The Nutshell Library” was published nearly a decade before I was born, but the stories are timeless. Alligators All Around, Chicken Soup With Rice, One Was Johnny, and Pierre A Cautionary Tale in Five Chapters and a Prologue may be tiny, but these stories pack a punch. I am physically unable to serve chicken soup without hearing Carole King’s song version of Sendak’s story in my head. “Sipping once, sipping twice….”
Sendak’s characters have been described as bossy, headstrong, and borderline obnoxious. Perhaps that’s why I like them so. In Pierre, the title character is a stubborn boy whose stock reply to everything is “I don’t care.”
Pierre learns to care, albeit the hard way, when a hungry lion enters the scene and tells Pierre that he will eat him up. When Pierre replies with his usual “I don’t care” the lion follows through on his threat. Some may consider this harsh for a kids’ book, but it’s a great lesson in (a) caring; (b) following through; and (c) karma. All important life lessons, in my opinion. The consequences to Pierre’s bad attitude are also foretold in the opening paragraph of the book:
“There Once was a boy named Pierre,
Who only would say, “I don’t Care”
Read his story my friend,
And you’ll find at the end,
That a suitable moral lies there.”
Lesser-known but equally charming are Sendak’s illustrations for Else Holmelund Minarik’s “Little Bear” series. When my kids were tiny, there was a Little Bear cartoon that was a favorite in our house. I’ll never forget the day that Payton was at preschool and I turned Little Bear on anyway, because it was such a mainstay of our everyday routine. The books are another series with which I will never part. Perhaps one day I will pass them on to some special little children in my life. Perhaps. No promises.
Similarly, I cherish my copy of In the Night Kitchen. Not because it’s as special to me as Pierre and Little Bear; frankly, the story never grabbed me like the others did. It’s precious to me, though, because of the controversy surrounding main character Mickey’s nudity. Librarians were known to draw a tiny diaper on little Mickey’s bum to cover his nudie-bits. The book was subsequently banned and roundly criticized, which of course made it all the more appealing to me. Betcha the closed-minded book-banners would really get riled up if they knew that Mr Sendak lived an alternative lifestyle. Not that it’s anyone’s business. Long live Mickey and the Night Kitchen. “Stir it! Scrape it! Make it! Bake it!”
Sendak is of course best known for Where the Wild Things Are, the book that defined his career and blew the doors off the genre. No longer would “See Dick run” suffice as prose for the wee set. Published in 1963, Wild Things set Sendak’s career ablaze and upped the ante for anyone who wanted to succeed as a children’s book author. Although he claimed he was not a children’s author; he wrote stories “about human emotion and life,” as he told People magazine in a 2003 interview.“They’re pigeonholed as children’s books but the best ones aren’t — they’re just books,” he said. That’s what I’ve always loved about them. They’re just books. Some children’s books have much more complex storylines and deeper character development than many bestselling grown-up books (Twilight and 50 Shades, this means you).
The genre of children’s books would never be the same after Wild Things. Gone was the puffy-cloud, happy-endings arena, and Wild Things depicted a defiant child, Max, in a scary place populated by giant monsters with big teeth (“And the wild things roared their terrible roars and gnashed their terrible teeth and rolled their terrible eyes and showed their terrible claws.”). In 2006, Sendak told NPR: “The idea of an American children’s book where the child is not perfectly safe was something that was new. I didn’t know it was new, I didn’t set out to break any new ideas. I was just doing what was only in my head.” Sendak reportedly modeled the monsters after his relatives — “who, in his memory at least, had hovered like a pack of middle-aged gargoyles above the childhood sickbed to which he was often confined,” per The New York Times. Somehow I’m picturing Sendak yelling “How ya like me now?” to those relatives.
Sendak’s illustrations are as stunning as his prose is riveting. What’s most amazing to me is that he was largely self-taught, which lends credence to the idea in my head that people who are great at something don’t become great by rote. It’s just there, it’s in them. Greatness is cultivated, refined, and harnessed, but it’s there. That greatness transfers seamlessly onto page after page of Sendak’s words and drawings. He defined generations of childhoods with his signature style: crosshatching, larger-than-life characters, not-always-happy endings. Countless kids learned to love the power of a good story after reading Sendak. The author received heaps of mail from kids, writing on their own or as part of a class project. In a NYT interview, Sendak told of one letter from an 8-year-old boy that stood out in his mind: “Dear Mr. Sendak,How much does it cost to get to where the wild things are? If it is not expensive, my sister and I would like to spend the summer there.”