Torrents
Posted: April 12, 2012 Filed under: cancer fatigue | Tags: blindsided by grief, cancer battle, Colette, grief, losing a parent to cancer, missing dad, missing mom, psychological effects of cancer, Ralph Waldo Emerson 24 CommentsCancer steals so much. All the time. Every day. This I know for sure.
A couple of days ago I smacked my head upon this truth and watched helplessly as my dear friend experienced this for himself. His dad died from cancer a decade ago. Ten years, yet the grief was as raw as can be, the loss as crushing as it was a decade ago.
His dad was a handy guy who could fix anything. He made a good living — and supported four kids — with his hands. My friend learned from his dad and is handy too. Although his livelihood isn’t manual, he can fix anything, like his dad. He just doesn’t always believe it until it’s done.
My friend was fixing the spring on our gate (one of the many things he’s helped with around our house). The spring on the outside of the gate had lost some of its tension, and the screws holding it in place had wriggled loose after seven years of use. How many hundreds of times has that gate banged shut as my busy little family comes and goes? When we were building our pool, the gate and the fence came down, to be replaced by temporary, orange plastic fencing (seen behind the slabs of flagstone) that couldn’t contain my dogs. My then 7-year-old chased the escaped dogs across a very busy street, unaccompanied, but that’s a story for another day.
In the process of repairing the spring on the gate, my friend broke his screwdriver. The one that he inherited from his dad. No big deal, it’s part of a set and he has several others the same size. But he was upset–really upset–because along with the screwdriver, he felt like he lost a piece of his dad.
His rational brain knows that the screwdriver isn’t indicative of his dad’s presence or absence. His intellect knows that having the screwdriver doesn’t mean that he still has his dad, or that by not having the screwdriver he no longer has a hold on his dad’s memory. But his irrational side mourned the screwdriver. His emotional brain felt that he’d lost another part of his dad. As the wise poet Ralph Waldo Emerson said, “Sorrow makes us all children again – destroys all differences of intellect. The wisest know nothing.”
I’m very familiar with the destroying of intellect in times of grief, and I know just how my friend feels. After my mom died, I hung on to all kinds of her stuff: cookbooks, costume jewelry, unfinished embroidery projects, even her ratty old college sweatshirt. My dad has the more personal items — her glasses, her wedding ring, her driver’s license. I desperately wanted a piece of her, any piece, to remain, so I clung to her things in hopes of finding pieces of her.
Guess what? It doesn’t work. The desperation, the clinging, the hoping against hope are all for naught. Once the person you loved with your whole heart is gone, snatched away too soon by illness, there is no holding on to them. I’ve learned this slowly and painfully in the almost seven years that my mom has been dead. Her stuff is just that — stuff. It’s not her. She’s gone and that’s the brutal finality of experiencing the death of a loved one.
I’ve written before about how grief sneaks up on us, and can buckle our knees out of nowhere, even after years have passed. I know that this is what happened to my friend the other day: he was going about his business, engaged in a simple task that took little effort and yet would yield great satisfaction when done. The sun was shining, the workday was done, and a cold beer accompanied him as he unscrewed the rusty, spent screws from my gate. But once the screwdriver broke, so did the dam that most days holds back the torrent of sadness that is life without his dad. How many times has he said he wished his dad were here to help him with a DIY project, or to admire his handiwork upon a project’s completion? Too many times to count. And in the midst of an ordinary task being done on an ordinary day, the torrent rushed through.
“It’s so curious: one can resist tears and ‘behave’ very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer… and everything collapses.” ~Colette
The Phantom Tollbooth
Posted: March 27, 2012 Filed under: breast cancer, cancer fatigue, literature | Tags: Chuck Jones, longterm antibiotics, mycobacterium fortuitum, post-mastectomy infection, psychological effects of cancer, PTSD, the Big Dig 6 CommentsRemember that book from back in the day? It was also made into an animated movie by Chuck Jones, the genius of cartooning. It was written before I was born, by Norton Juster and was illustrated by Jules Feiffer. Not sure what either of them has gone on to do, but perhaps the Tollbooth was enough.
thenewyorker.com
It’s the story of a boy named Milo who unexpectedly receives a magic tollbooth, which he explores in a toy car. Along the way he becomes lost in the Doldrums, where thinking and laughing are strictly prohibited, and is rescued by Tock, a lovely giant watchdog with an alarm clock attached to his belly. The parallels between this story and the cancer “journey” are many.
I was thinking of The Phantom Tollbooth yesterday as I noticed a phantom pain deep in the area formerly known as my right breast, where the evil post-mastectomy infection set up camp and decided to stay awhile. The pain itself wasn’t strong enough to take my breath away, but the implications were, and my mind immediately began racing: what if the infection is back? what if it never fully went away? There were signs of that damned infection, after all, during The Big Dig, which was 9 months after the infection first made itself known.
It’s been a year since The Big Dig, which was my best option for defense against the infection after 267 days of oral antibiotics didn’t fully slay that beast. Nearly a year later, a random pain in the area of my body that was my Ground Zero still has the power to bring me to my knees. Not because it hurts so badly, but because of what it represents.
The idea of the infection once again rearing its ugly head scares me. A lot. I don’t think about it often because I’m busy living my life, but once in a while, as in the case with the phantom pain, the thought does cross my mind. If it did come back, or if it reasserted itself after lying dormant, I would freak out. And yes, that is the correct medical term for becoming reacquainted with the mycobacterium that made a cancer diagnosis at age 40 seem like a walk in the park. The cancer part was easy (relatively speaking) but the myco damn near destroyed me.
Looking back on that dark period of my life is like watching a movie. I see this girl who’s going about her charmed life. Sure there are things that could be better but for the most part it was indeed a charmed life. She lives this charmed life rather out loud, and does “all the right things” to ensure that the charmed life has plenty of staying power. Baseline mammograms at age 36 because of her sweet mama’s premature death; a meat-free, plant-based diet free from preservatives and other nasty; daily exercise; a premium placed on a good night’s sleep; plentiful fresh air and clean water; an all-out avoidance of hormone-filled dairy products for her and meat products for her kids; a plan to deal with the stresses that sometimes darkened her door.
This girl was the last person you might expect to be felled by cancer. And yet, she was.
It’s hard for me to recall those dark days. Of course I know it happened and I was there, but my brain seems to protect me from all the gritty details. After taking in the diagnosis, deciding on the bilateral mastectomy, enduring the surgery and thinking I was on the road to recovery, the infection hit and knocked the wind right out of me.
There’s a vivid PTSD associated with the whole infection thing. I’d bet there’s a whole separate PTSD associated with the cancer thing, too, and it comes out in strange ways, such as a phantom pain sending me straight from normalcy to crazy town without stopping to collect my $200. Could be that the phantom pain in my chest was from 4 sets of tennis on Sunday after a tough upper-body workout on Friday. Or it could be from the wear & tear of multiple tissue excisions and general gutting of the infected skin during the infection’s salad days. When I was a kid, I had pneumonia, and some part of the illness settled in my left lung. For years after that illness, I’d often feel a pain/fatigue in that same spot. Perhaps the phantom pain in my chest is similar.
Very likely it’s nothing to worry about, but once you’ve danced with the devil that is cancer, any twinge or spot or pain sets you on high alert. Some of us head straight for the catastrophic death spiral my sweet friend Lauren writes about. As she so knowingly puts it “The catastrophic death spiral makes us think a lump in our thigh is thigh cancer, a headache is brain cancer, and shortness of breath after running is surely announcing lung cancer. The catastrophic death spiral is the vortex that is cancer.” My recent phantom pain sent me spiraling before I had a chance to reel myself back in to the land of rational thought. It’s worrisome enough to have already dealt with the havoc that cancer brings, but to also feel the aftershocks of that disaster just stinks.
I expect that the constant looking over my shoulder is common in cancerland. But I don’t like it. I’m rather known for my heightened sense of justice and the idea that if you do the hard work/right thing, you’ll get the payout. But bad things happen to good people every day, and life isn’t fair. People who take good care of themselves get cancer, and people who treat their bodies to a buffet of Animal House-style debauchery outlive them. I know this, yet I’m still brought up short by the phantom pain’s effect on me and how quickly and effortlessly I returned to the catastrophic death spiral.
I was probably foolish to think that there would be an end to the cancer “journey” and that the incidences that trigger PTSD would gradually disappear. I should have known that even after logging many miles and paying the requisite tolls in this “journey,” I would forever be circling, just shy of my destination, and always consulting the map. Once Milo returns home from his trip on the tollbooth, he sees a note, which reads, “FOR MILO, WHO NOW KNOWS THE WAY.” I’m looking for my note and wishing I knew the way.
Phantom Tollbooth's Map of Lands Beyond
The spring of my discontent
Posted: March 20, 2012 Filed under: cancer fatigue | Tags: 50th wedding anniversary, grief and cancer, I hate Mother's Day, losing a parent to cancer, missing mom, psychological effects of cancer 7 Comments
Mom's photo for her wedding announcement in the newspaper
Blindsided
Posted: February 19, 2012 Filed under: cancer fatigue | Tags: Barbara Karnes, end of life, Gone From My Sight: The Dying Experience, Henry Van Dyke, Hillbilly Handfishing, hospice care, Kate Winslet Emmy acceptance speech, losing a parent to cancer, missing mom 25 CommentsSo I’m minding my own business on a rainy Saturday morning. On a morning in which the thunderstorm woke up my favorite girl, and her hungry little piggy, at 5 a.m. While that’s not my ideal start to a Saturday, we made the best of it: a huge mug of coffee for me, some hot tea for her, a blanket for each and a snuggle by the blue-green glow of the TV. I didn’t really want to be up that early, and I certainly didn’t want to be watching “Hillbilly Handfishing,” but I’ll take the quality time with my girl.
The last thing I expected on this rainy day was to be blindsided by grief. It happened innocently enough, as it tends to after several years of loss. After the sun rose and the handfishing concluded, I was searching through the cupboards in the game room for a small paintbrush to touch up some paint. No paintbrush to be found, but my search did turn up something I didn’t expect to find: a hospice booklet left over from my mom’s cancer “journey.”
For those of you fortunate enough to be uninitiated in grief and loss, you may not understand. For those of you who have been initiated in this dreadful state, you know. You know exactly how grief comes out of nowhere to blindside you.
I remember reading this booklet, in the fall of 2005 when my mom’s cancer “journey” was coming to a really yucky end. The hospice people were wonderful, providing much more than just care for my dying mama. They had care packages for my two young kids and for my niece and nephew. The oldest of YaYa’s 4 grandbabies was 8 when she died, the youngest (who happens to be my favorite girl) was 3. The teddy bears and coloring books given to them by the hospice workers probably didn’t register in the same way the “Gone From My Sight: The Dying Experience” booklet did with me.
Because the whole experience of my mom dying was rather surreal, I don’t recall feeling strange about being handed a booklet with such a title. I don’t recall wondering what The Dying Experience was all about, because we were living it. How ironic to be living The Dying Experience.
I do recall being grateful for the booklet’s upfront, go-at-your-pace approach to grief. This is the one thing I know for sure: no one can dictate another person’s grief, and no can anyone dictate another person’s death experience. As the booklet so aptly describes, “Each person approaches death in their own way, bringing to this last experience their own uniqueness. This is simply a guideline, a road map. Like any map, there are many roads arriving at the same destination, many ways to enter the same city.”
Hmmm, I certainly never likened death to a city, but it sure makes sense. Of course, I never thought I’d be facing thoughts like these, much less the death of my sweet, beloved mama. My own life as a mother had barely started, with a 3-year-old wild animal disguised as a very creative and outside-of-the-box little girl, and a headstrong 6-year-old boy who would astound me in the years to come with the memories he retained of his YaYa. How could my sweet mama be leaving me just as I was starting to learn to navigate this not-always-tranquil motherhood?
How could she be leaving me? “In her own time, in her own way,” as the booklet told me. Reading on, I learned another truth: “Death is as unique as the individual who is experiencing it.”
The booklet goes on to say that there is a shift that occurs within the dying person, which takes them from “a mental processing of death to a true comprehension and belief in their own mortality.”
Another thing I learned the hard way.
I’m certain that my sweet mama knew she was dying. Being told by the gurus at MD Anderson that the clinical-trial drug didn’t work to arrest the cancer that was eating her alive is rather concrete. Being told that the only thing left to do is call hospice is rather concrete as well. She knew. But in her quiet way, she didn’t talk about it. No bitching or moaning, no complaining, no ranting or shaking her fists at the heavens for being dealt such a rotten hand.
Instead, she hugged each doctor (she was really good at that, and I wish I’d inherited that trait; I’m not much of a hugger). She gathered herself and without shedding one tear or divulging her true feelings, she thanked the docs for trying so hard to save her. And she went home to plan her funeral.
For real. She wanted to plan it all–from the psalms read to the hymns sung to the outfit she would wear–so that those of us left behind wouldn’t be stuck trying to figure it all out. At a time when she could have stuck her head in the sand and said to hell with it all, she buckled down and spent her remaining strength on making things easier for her family. That’s the kind of person she was, and it’s a damn shame that she is with us no more. A bright and precious light went out when she died.
I thought I was prepared. I’d had months to wrap my head around it, after all. Watching her go from a vivacious, outgoing Nosey Rosey who never met a stranger to a wisp of herself should have prepared me. Seeing the life slowly fade from her immensely bright soul should have eased the transition from her being the center of our lives to her being gone. Being witness to the slow yet certain creep of cancer’s all-encompassing grasp of all things Barb should have steeled me to the reality I was facing.
And yet, none of those things happened. As Gone From My Sight: The Dying Experience so succinctly explains, “Focus changes from this world to the next, as the dying person loses his/her grounding to Earth.” She lost her ground to Earth, and we lost the glue, the sweetness, the center of our family. There is no preparing for that. There is no transition, no steeling. Although I knew it was happening and had accepted the fact that my beloved mother was dying, I was not prepared.
Just as I was not prepared for the onslaught of grief that hit me today as I came across the hospice booklet. In the middle of a perfectly normal day, while searching through a cupboard for a paintbrush, I was instantly transported back to the awful, wrenching reality of her death. I had no idea the booklet was in that cupboard. More importantly, I had no idea that the magnitude of grief, the bottomless pit of despair, could come back so quickly. In an instant, the swirling eddy of loss surrounded me, as heavy today as it was 6 years ago. As Kate Winslet said as she dedicated her Emmy win for the HBO miniseries “Mildred Pierce” last fall, “It doesn’t matter how old you are or what you do in your life. You never stop needing your mum.”
The last page of Gone From My Sight: The Dying Experience contains a Henry Van Dyke poem unfamiliar to me. I don’t remember reading it when I received the booklet; my guess is that I didn’t make it that far. But now I have, and I’m glad I did.
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: “There, she is gone!”
“Gone where?”
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear the load of living freight to her destined port.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” There are other eyes watching her coming, and other voices ready to take up the glad shout: “Here she comes!”
And that is dying.
Thinking about it
Posted: February 9, 2012 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, cancer is not a gift, cancer recurrence, metastasis, psychological effects of cancer, PTSD, Rihanna, tamoxifen 8 CommentsI ran into a friend yesterday who I hadn’t seen in a while and she asked me how I’m doing. Great, I replied, just great. And in that moment, I truly was. I’d just finished a kick-ass workout and had a few minutes to watch my team play tennis against one of our old rivals. I had a bye this week so I could enjoy the two matches going on side-by-side, plus the gaggle of tennis hens flocked in between courts to visit. Those of you living in colder climates would scoff at our gaggle, in the bright sunshine and temps in the low 50s I’d say, bundled up like Texans tend to do when it gets “cold.” There were tights under tennis skirts, gloves, hoods pulled tight around sunglassed faces, and blankets wrapped snugly. The wind was downright nippy, after all. Good thing we have such fulfilling fellowship to help keep us warm.
Anyhoo, I had a precious little chunk of time after the gym and before picking up my carpool for early-dismissal day, and I was surrounded by friends.
Great. Just great.
Big smile.
Despite the sadness that’s permeated this week with the deaths of Rachel and Susan (and the flurry of blog posts, Facebook posts, articles, Rachel’s beautiful obituary, and personal stories about Susan like this), I’m great. My schedule is full but not overwhelming (just the way I like it). My laundry is done (if not folded and put away). My closet is clean and tidy (I can’t think when clothes are draped and shoes are jumbled everywhere). I’m great.
My friend was glad to hear that I’m great, then asked, “How do you not think about ‘it’ all the time?”
By “it” of course she meant cancer. And at that moment, I wasn’t thinking about “it.”
I thought for a minute before answering. This is an important question.
How do you not think about it all the time? While I don’t think about it all the time, cancer does indeed hover around me an awful lot. Sometimes in the foreground, front & center, and sometimes in the background, inching ever closer and waiting for any opportunity to swoop in and crash the party.
I explained to my friend that for me, it’s like this: you know that feeling when you get caught in the rain, or maybe thrown in a pool, and it’s a while before you can change clothes? That feeling of shirt, pants, and undies plastered to your skin? Heavy and uncomfortable, but not debilitating? It’s like that.
When fully clothed and drenched, one can still function. One can remain drenched for a long period of time and still get through the details of one’s day. The wet clothes cling and maybe even chafe a little, but one can breathe. One can move, onward and upward and from the rainy parking lot to the car, or from the pool into the house. Perhaps one’s heart rate jumps a bit as the adrenaline rushes, and maybe one even gets a little short of breath from the shock of the deluge of water or the careening into the pool, but one is still fully functional.
Myriad reminders of cancer assault me every day. Some reminders are overt, like the news of Rachel’s and Susan’s deaths on Monday, or more covert, like the strange dichotomy of my life’s timeline: events that happened before or after cancer. Reminders can be lasting memories, like the chalkboard sign my favorite girl drew declaring “Mom is feeling better!” a day after I was sprung from the hospital after my mastectomy. They can also be tactile, like the weight of the fleece blanket I used during each hospital visit settling atop my weary body.
The visual reminders pack the most punch: the battle lines of scars that crisscross my body, of course. The prescription bottle of tamoxifen that has a long-term lease on my kitchen counter. The drawer full of bras in various sizes, from the totally flat-chested “it’s an utter waste of money” bras to the “I sure thought this would work for the finished product” bras. The humongous stack of EOBs and bills from the various doctors: breast surgeon, anesthesiologist, infectious disease specialist, oncologist, OB-GYN, lymphedema/massage specialist, GYN oncologist.
Cancer changes people. Inside and out. In ways too numerous to count. In ways both miniscule and grand. Not all the changes are bad, mind, but know this: you will never read one word on this blog, now or ever, about cancer being a gift. If cancer is a gift, I sure as hell hope there’s a gift receipt, because I’m going to return it. And if you’re the sort of person who thinks cancer is a gift, you are most definitely not invited to the party.
Cancer encourages weird thoughts. Because of cancer, simple things like hearing Rihanna sing about love in a hopeless place makes me think not of star-crossed lovers in the projects, but the compassion of friends during life’s most difficult period.
Cancer panics me into thinking that any little twinge is a metastasis. Headache? My cancer has spread to my brain. Hip pain? Oh, mercy, it’s in my bones. Cramps? Ovarian or uterine secondary tumors. Just a couple days ago, I tweaked a muscle on my left side, in between my ribs. For an entire day, I couldn’t inhale fully; taking a deep breath hurt, and my first thought wasn’t the rational realization that I should have gotten a stool to reach the shelf in the laundry room, but the irrational thought that the teeny spot on my lung–most likely a byproduct of having pneumonia as a child–has grown into a tumor so big I can’t breathe.
Cancer elicits a full range of feelings and emotions. There’s exhaustion, anger, gratitude, fear, confusion, relief, distrust, joy, anxiety, and sadness. Sometimes all in one day. There are times in which I’m going about my non-cancer-related business and a wellspring of emotion surges up out of nowhere. My brain must be on constant overdrive. Sometimes the wellspring of emotion is bad and overwhelming, like the thoughts of recurrence. But sometimes it’s good, too, like the happiness humming through my heart when my septuagenarian friend at the gym showed me a photo on his iPhone of his golden retriever, Abby, covered up to her neck in his bed. Why does my heart sing at the obvious love this man has for his dog? Because cancer reminds me that life is fleeting and the good times aren’t guaranteed, so savor the small things. Cancer reminds me to be present in the moment, for you never know when idle chit-chat by the treadmill will flow into a display so sweet in its simplicity, yet so rich in its meaning. That Mr McKay loves Abby enough to tuck her into his bed with a down comforter is rich. That he chose to share that with me is even richer, and that I slowed down enough to engage him, instead of rushing off to my next to-do item, is the best part of all. In my pre-cancer life, I would have been in a rush to get out the door after my workout. In my post-cancer life, I know to slow down, listen to the people around me, and drink in their life experiences. While the weird thoughts that cancer brings get more attention, the beneficial thoughts are there, too.
I had a smile on my face all day thinking of Abby and her besotted owner. No doubt my thoughts will soon run amok again, imagining all manner of cancer-related craziness instead of lingering on the pure sweetness of a man and his beloved dog. Before long, I’ll again feel the soggy weight of wet clothes on my back as thoughts of cancer snake their way through the dense thicket of neurons in my brain.
Giuliana Rancic
Posted: December 15, 2011 Filed under: breast cancer, cancer fatigue | Tags: bilateral mastectomy, breast cancer and young women, David Jay, Guiliana Rancic, JP drains, People magazine, postaday2011, The SCAR Project, young women and breast cancer 19 CommentsI wasn’t planning on writing about Giuliana Rancic’s breast cancer diagnosis in October or her decision to have a double lumpectomy or her announcement that her double lumpectomy has morphed into a double mastectomy. Much has been written about it, and she’s done the talk-show circuit, and I didn’t feel the need to comment on the latest celeb to begin a cancer “journey.” However, the more I read about her story, the more compelled I am to comment.
First, when her cover issue of People magazine hit the newsstands, it nearly caused me to have a heart attack. I was mindlessly unloading my loot from my shopping cart and putting it on the conveyor belt when I caught a glimpse of this:
I didn’t notice the photo or her name, but was drawn in by the bold yellow headline and wondered, who’s that and what’s she got that is serious enough that she has to fight for her life??? Imagine my shock when I read the fine print and realized that it’s Giuliana Rancic and she’s got what I had — breast cancer. After the shock wore off, I thought I’d better see how serious her diagnosis is; after all, if she’s fighting for her life, it must be bad. I’m thinking stage 4 with mets everywhere.
The article in People, titled “The Fight of My Life,” speaks of her “devastating cancer diagnosis.” I’m thinking this is really bad.
As I read on, though, I learned that her BC was caught early and had not spread.
Whew!
So does this mean that early-stage, non-metastatic BC qualifies one to be deemed “fighting for one’s life”? If that’s the case, what does that mean for women whose BC is not early stage and has spread?
This kind of overwrought journalism really bugs me. I know that People has to sell mags, but good grief, how about a little truth in advertising? The cover story of “I’M FIGHTING FOR MY LIFE” in big, bold letters nearly caused me to stroke out, and left me thinking I really underplayed my BC story. My cancer was in both breasts, not just one, and I never declared that I was fighting for my life. I’m thinking I seriously mishandled this.
I’m certainly not one to kick a sister when she’s down. That’s not my intent at all. I wish her the best; I truly do. Cancer is a terrible thing, no matter what age or what stage one is when diagnosed, and I certainly don’t mean to give Rancic grief — she’s enduring enough of that as is. However, I do wonder about some of the comments she’s made. I was hoping they were taken out of context, but ….
She said that the double lumpectomy didn’t get all the cancer so she was moving forward with a bilateral mastectomy, and I totally support her saying that deciding to have a mastectomy “was not an easy decision but it was the best decision for me.” Agreed. But when she went on to say “Not only can it [mastectomy] save your life, but you can come out feeling healthier and with a positive self-image”
Really?
Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.
Come on, show of hands.
Anyone? Anyone?
On The Wendy Williams Show the other day, Rancic spoke openly about her surgery and how she thinks it will affect her: “Listen, I love my girls, but I’m gonna feel more like a woman when this is all done.”
“I’ll be able to say that I survived something major and it’s made me stronger. I will be a better woman for it.”
I hope she’s not setting herself up for a very big, very traumatic fall.
Rancic went on to say that “scars are beautiful. I think scars tell a story.”
Yep, there’s a story there all right. Millions of women can attest to that. There is most definitely a story there. Hopefully not a horror story.
I wonder if she’s seen any images from The SCAR Project. I was blown away by photographer David Jay’s shots the first time I saw them, and receiving The SCAR Project book is one of the best gifts ever (thank you, Trevor). The women are beautiful, and their strength and kick-assed-ness is beautiful. The scars, not so much.
thescarproject.org
thescarproject.org
thescarproject.org
thescarproject.org
Giuliana Rancic speculated of her breasts after reconstruction: “They might come out looking even hotter. You gotta have fun with this. We find the humor in everything. Bill helped pick ’em out. I’m like, ‘Bill, that big? Really?'”
They might come out looking even hotter.
I’m gonna have to linger on that idea for a minute.
And when I’m done, I will contemplate the damage that occurs when people say things that imply that facing breast cancer is a tidy event that requires surgery and treatment then fast-forward on to the happily ever after. While the happily ever after certainly can, and does, happen, I think it’s misleading to say that BC is something you deal with and move on. The idea that after cancer comes transcendence is flawed. The idea that all you have to do is wrap a big pink ribbon around a cancer battle is flawed. The idea that everyone comes away from breast cancer a better, stronger person is flawed. It’s not that easy, it’s certainly not pretty, and it doesn’t always result in the kind of change you would consider positive.
In speaking of Rancic’s mastectomy, her husband Bill said, “Our goal is to be done with this by Christmastime and not look back. We’re taking the rear view mirror off the car and we’re not looking back, because we’re going to be done.” Well, considering she had the surgery two days ago, and is still in the hospital, I hope she’s “done” by Christmastime. It’s good to have goals.
Maybe the whole cancer thing is still too fresh for me, too raw, but the idea of not looking back is weird and foreign and borderline incomprehensible. Maybe there’s a pair of magic “don’t look back” glasses that gets passed out upon diagnosis, and I missed out on that. I can see how that might happen as I’m always in a hurry and might have scooted out of Dr D’s office before anyone had a chance to give me the “don’t look back” glasses. Or perhaps I was supposed to get them from my oncologist, but was so freaked out by the fact that I have an oncologist that I ran out of his office before I got the magic glasses. Maybe Giuliana got her glasses in advance; one of the perks of being a celeb and having cancer. Personally, I don’t know how one can experience a cancer “journey” and not look back. I hope it works out for her.
If any of y’all are going to be in Times Square for New Year’s Eve, look out for Giuliana. And be sure you don’t bump into her. Those mastectomy scars and JP drain holes take a while to heal.
Inquiring minds
Posted: December 7, 2011 Filed under: breast cancer, cancer fatigue 9 CommentsSo yesterday I had my appointment with the gyn oncologist, and I haven’t taken the time to report back. Many thanks to you dedicated readers who’ve inquired about the appointment. Y’all are keeping me on my toes.
A little refresher: Dr B was recommended by Dr P, my new favorite OB-GYN, for my strange and complicated situation: to remove or not to remove my ovaries? That is the question. And then the follow-up question: how to remove them? After a recent week from hell with more conflicting opinions than skeletons in Herman Cain’s closet, the newest doctor in my supporting cast at long last added some clarity. Well, sort of.
Dr B says there certainly is reason to proceed with the surgery, based on my maternal family history. Although I tested negative for the BRAC gene, there’s enough cancer, of various sorts but mostly reproductive, to justify yanking my ovaries.
But, on the other hand, my recurrence score is quite low.
But, on the other hand, I do favor the scorched-earth policy of doing every- and anything I can to assure that this blasted cancer doesn’t have a chance to come back.
But, on the other hand, the oophrectomy would be surgery #9 for me since I was diagnosed 18 months ago. As much as I dig the morphine, I’m not exactly embracing another surgery.
But, on the other hand, perhaps it would be nice to breathe easy knowing I’ve formally cut ties between my body and the pesky hormones that caused cancer to so rudely interrupt my life.
At this point, you might be wondering just how many hands this new doctor has.
And you might now be quite enlightened as to the utter confusion of my current situation.
Dr B said that she’d like to give me an answer to my question, but there really isn’t a cut & dried, definitive answer.
I should have known.
Nothing, and I do mean nothing, has been easy or normal or gone according to plan thus far; why should this be any different?
Rather than flipping a coin, which at this point seems as reasonable as anything else, she proposed what sounds like a great idea: she will present my case and all its myriad complications, to a consortium of oncologists at their round-table discussion Thursday morning. The group of docs in this brain trust will pick apart my checkered past, render opinions, and hopefully provide an answer.
Who wants to put $20 on a hung jury?
As much as I would love to have Dr B call me at our appointed time on Friday to say, it’s unanimous (one way or the other, at this point I don’t really care as long as I don’t have to make the decision), I am completely prepared for her to say, we dunno.
And so I begin yet another round of the waiting game.
The good news is that Dr B said if I decide to proceed with the surgery, she can indeed do it laparoscopically. That makes for a much easier recovery, and at this point in my cancer “journey,” I sure would welcome something easy.
As much as I resisted getting yet another doc involved, and as much as I really didn’t want to have to trot out my medical history once again, I’m glad I was a big girl and made the decision to go the distance. I like Dr B a lot, and getting myself into the hallowed MD Anderson halls wasn’t nearly as complicated as I expected. Perhaps I’d had enough time to rest up after faxing the huge sheaf of medical records, pathology, and test results to her office. I was almost taken down by the “welcome packet” that arrived, in 2 separate envelopes, from Anderson. I managed to survive the process of filling out another sheaf of papers and documenting the gory details of my family and personal medical history, including a nosey question about how many sexual partners I’ve had. Geez, all I want is an opinion on an oophorectomy, not the Spanish Inquisition. 
The hilarity continued during the actual appointment, when the fellow who shadows Dr B was going over the sheaf of papers and her eyes bugged out when she got to the answer to the Spanish Inquisition.
Not really. That didn’t happen, but I imagined it happening. If my answer to that particular question was higher or lower than average, the fellow (whose name I cannot remember but who I wouldn’t identify anyway, because that might invade her privacy) didn’t let on. And I’m grateful for that. I’ve long since lost any shred of modesty or dignity in this cancer “journey,” but I do appreciate not having to get into that subject with her.
Along with the fellow who may or may not be judging me based on my answer to that one question, Dr B has a nurse practitioner and a visiting doctor from China. All four of them looked under the hood, so to speak, when we reached the exam part of the appointment. Nothing like bringing 4 new people into the inner recesses of the wild and wonderful world that is my body after breast cancer. I wanted to offer to let the receptionist and the janitor and the Fed Ex delivery guy come in, too, but I wasn’t sure if the group of 4 would get my humor, so I kept my big mouth shut. Maybe next time.
The gift that keeps on giving
Posted: December 5, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, HOPE Lymphedema Treatment Center, K9 training, lymphedema, postaday2011, psychological effects of breast cancer 16 CommentsI’ve been remiss in blogging the last few days. I could be a big baby and say I haven’t been feeling so great, but I won’t. Even if it’s true. Cancer. It’s always cancer. Seems that nary a day goes by without someone I know or a friend of a friend being newly diagnosed. It would be easy to get bogged down in all things cancer, but I won’t.
Something bad happened last week. Not “recurrence” bad, but side-effect bad. Something I’ve been scared shitless of since learning that this foul thing even exists. Until last week, said foul thing had not gotten ahold of me, but then on Wednesday last, everything changed.
Lymphedema.
The dreaded swelling of a limb following surgery, particularly surgery in which lymph nodes are removed.
Since my mastectomy 18 months ago, I’ve been on guard against the dreaded lymphedema. I have a fantastic lymphedema specialist, Tammy, who has become not only a vital member of my health-care team but also a great friend. Visiting her is like a trip to the spa — serene setting, trickling water fountains, dim lights, soothing music, and lovely & caring women. It’s a safe haven among the shitstorm that is breast cancer.
I started seeing Tammy as a preventative measure all those many months ago, and while I never had lymphedema, she worked her magic on my scar tissue and rough spots after my surgeries. With her help, and that of office manager and “salt police” Janice, I’d educated myself about lymphedema and had, until now, been successful in preventing it.
All that came to a screeching halt Wednesday. The proper care, the education, the prevention, the vigilance — gone. Just gone. My left arm swelled up like a balloon and felt heavy, tingly, tender, and sore. I was scared.
The thing that scares me so much about lymphedema is that it can come out of nowhere, months or years after surgery. And it can be permanent. The last thing I want after being handed a cancer diagnosis at age 40 is to go through the rest of my life with a balloon arm. That would put a serious crimp in my tennis game.
Luckily, Tammy and her staff of lymphedema slayers were on the ball and treatment commenced right away. I got to experience the joys of “the pump,” in which the offending limb is encased in a stockingette, then stuffed into a huge, padded wrist-to-shoulder sleeve reminiscent of the padding used to train police dogs, then encased in a plastic-y sleeve attached by thick cables to a machine that squeezes the limb rhythmically. The idea is to squeeze the excess fluid out of the limb and guide it back through the battered lymph system to then be filtered out of the body and released into the atmosphere, hopefully never to be seen again.
The plan was to rest (egads), avoid lifting anything with my left arm (bye-bye strength training), and wear the compression sleeve (oh so fashionable, and yet another palpable signal to the world that there’s something wrong with me). Pump it every day, drink as much water as I can hold and then some more, and hope it goes away. After laying low, being a gimp, wearing the sleeve, pumping and adding some k-tape, and drowning my innards 5 days, there is some progress. The swelling is down, but not totally gone. I want it gone. IMHO, 5 days is more than enough time for it to be gone.
Y’all know how much I loooooove being a patient, enduring complications, and being sidelined.
Not.
This latest complication and sidelining was rather tough. Mentally more than physically, which is a change. I guess it’s good to shake things up every now and again. The getting back to “normal” was getting kinda boring, and the idea of finally putting this cancer experience behind me probably was a pretty stupid one. Why not insert a wrench into the plan?
There are lots of things that aggravate the hell out of me with lymphedema. Lots of things. First and foremost is how rudely it interrupted my foray back into my “normal” life after the latest surgical procedure. I’m a busy girl and an impatient girl, so the “stop-start-stop-start” nature of getting back to “normal” after cancer and in between the 8 procedures I’ve had is trying. Just as I was getting back to “normal” after the October revision and hitting it hard at the gym, the balloon arm strikes. In fact, one of my fellow gym rats was just telling me, the day before the lymphedema arrived, that it looked like I was back. As in, back to my usual workout routine and getting stronger. Two weeks in a row, I’d had 3 hard workouts in a row. I was actually starting to see some progress, and with no more procedures on the horizon, my future in the gym seemed quite bright.
I should have known it was just a tease and wouldn’t last. I should have realized that cancer and its many ugly aftereffects will always have a hold on me and will get the better of me. I should have recognized that no matter how hard I work and how many things I do right, my arch nemesis will forever be skulking around in the shadows, waiting for the perfect time to shit all over me once again.
The Pink Underbelly 