In the last six months…
Posted: May 24, 2012 Filed under: breast cancer, cancer fatigue | Tags: blog challenge, cancer at age 40, finding happiness after cancer, post-cancer life, psychological effects of breast cancer 21 Comments »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.”
Hmmmm. Interesting.
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. 
Blog Party, APA style
Posted: May 16, 2012 Filed under: cancer fatigue, drugs, menopause | Tags: American Psychological Association, antidepressants, antidepressants used for conditions other than depression, beta blockers, Dana Jennings, insulin, menopause, Oncotype DX, psychological effects of cancer, PTSD from cancer, statins, stigma and depression, tamoxifen 18 Comments »The American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.
The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.
Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.
Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.
We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).
Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.
I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.
I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.
I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.
Webmd has an entire online community devoted to cancer. From the web site:
“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”
“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”
“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”
The circus may be gone, but the big top remains
Posted: May 11, 2012 Filed under: breast cancer, cancer fatigue, infection | Tags: DIEP breast reconstruction, life after breast reconstruction, mycobacterium fortuitum, nosocomial infection, post-mastectomy infection, psychological effects of breast cancer, the Big Dig 20 Comments »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.
google.com
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 Comments »Cancer 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 Comments »Remember 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 6 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 24 Comments »So 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 Comments »I 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.
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