Lately, much has been written about the rush-to-mastectomy decisions adopted by women with DCIS diagnoses. DCIS (ductal carcinoma in situ) is the diagnosis given when abnormal cells reside in the milk ducts. It is precancerous and noninvasive. It is not life-threatening, although it can lead to an increased risk of developing an invasive cancer. While it is unquestionably scary to receive such a diagnosis, some in the medical community are questioning whether a slash-and-burn reaction to DCIS is appropriate. The current standard of care for DCIS is surgery and radiation. A natural reaction for a woman with DCIS is to undergo the most far-reaching form of treatment available. I won’t argue with that, because no one has the right to judge another person’s reaction to or decisions toward a cancer diagnosis. Anyone who tries to should be punched in the brain. Repeatedly.
That said, data don’t lie, and the case being made for a less-aggressive approach to DCIS is gaining ground. Dr Laura Esserman, a breast surgeon at the University of California, San Francisco, is setting the pace. In a recent New York Times article, Esserman says her goal is “to move the field and do right by our patients.”
Instead of immediately ordering biopsies for women with unsettling findings on their mammograms, Dr Esserman recommends active surveillance. She favors the “wait and see” approach, speaking out about the myriad ways in which a woman is adversely affected by slash-and-burn treatment for cancers that rarely progress beyond DCIS.
Dr Esserman is bringing to light the fact that mammograms — while valuable — find the slow-growing, non-metastasizing cancers that lead to panic more than they find the most lethal forms of breast cancer. She is lobbying for big changes in the early-detection world and has asked the National Cancer Institute to consider dropping the word “carcinoma” from the DCIS label. Instead, Esserman would like for DCIS to be renamed “indolent lesions of epithelial origin.” IDLE would replace DCIS as the way to describe a stage 0 diagnosis. IDLE is catchy and much friendlier than DCIS, if you ask me.
This woman is turning the breast-cancer world on its head, and I like it. In an era of less face-time with doctors, Dr Esserman spends as much time as needed with each patient, often texting or calling them at home. A big part of her “wait and see” approach to DCIS is asking the patients soul-searching questions and utilizing specific testing to gather further evidence before recommending surgery. She’s pushing for more innovation in clinical trials and for fine-tuning the process of screening for breast cancer. In cases for which she does recommend surgery, Dr Esserman counsels and frets like a family member, and even sings to her patients as they undergo anesthesia. Personally, I’d much prefer a serenade to a prayer before I go under the knife. I can imagine her patients, smiling and relaxed, as they enter the last blissful sleep they will enjoy for a while to come.
I love Dr Esserman. I don’t know her, but I love her. I love that she’s crashing through long-standing views and taking the road less traveled. I believe she will enact great change in the landscape of breast cancer. I wonder how I would have reacted to my own breast cancer diagnosis if mine had lacked an invasive tumor. If my cancer was simply DCIS, would I have chosen a different path? I don’t know, but I do know how scary my diagnosis was. I know that the scorched-earth treatment plan was right for me. I had watched my mom die from cancer at age 67. My kids were still in grade school when “the C word” was applied to me. I wanted to be as aggressive as possible, so my choice was to go balls-out against cancer. And it’s a good thing I did, because my “non-affected” breast turned out to be riddled with cancer. Nothing showed up, though, on any of the screenings. Nothing. When Dr Esserman mentioned that mammograms don’t find the more lethal forms of breast cancer, I nodded my head knowingly and actively talked myself off the roof rather than allowing myself to think “what if?” What if I had chosen a single lumpectomy or single mastectomy, and that smattering of cancer cells and Paget disease in my “unaffected” breast had continued to evade detection? Would I be sitting here, typing this post? Would I be glancing up from my computer to see this guy outside my window? What if?
The backlash surrounding Angelina Jolie’s announcement that she has a prophylactic bilateral mastectomy is a lot of things: stunning (not in the good way), discouraging, upsetting, disgusting, rage-inducing, sad…the list is long.
I keep telling myself to just stop reading the negative headlines and judgmental comments, but I can’t. I’m drawn to them like a thirsty girl to a sparkling glass of bubbly.
The comments range from stupid to mean to crazy. This crackpot goes way out on a limb with a conspiracy theory (thanks to my friend Katie for alerting all of us to this blood-pressure raiser). A couple of gems from Mike Adams, who calls himself the Health Ranger, but whom I’m calling Senor Crazy-Pants:
“The cancer industry wants to funnel women like cattle into their slash-poison-burn system of quack treatments. And Angelina Jolie is their new cheerleader. Scarred and no doubt experiencing the chest and armpit numbness that almost always accompanies mastectomy surgery, she now seeks to ‘inspire’ other women to exercise their own sick ‘choice’ and have their breasts removed, too!
“It is the sickest invocation of women’s power that I’ve ever witnessed. This is not empowering women, it’s marching them into self-mutilation. And the ‘risk’ is a complete fraud. In truth, Angelina Jolie had a higher risk of dying on the operating table than dying from breast cancer if she simply followed an anti-cancer lifestyle.”
According to Senor Crazy-Pants, we could avoid cancer with a healthy diet and lifestyle. So it’s my fault that I got cancer, even though I don’t eat meat, choose organic, strive for a plant-based diet, and avoid processed foods and environmental chemicals.
“This is no less than a media stunt to gain more market share to stay up high on the A list.” Right. As if her every move isn’t chronicled by papparazzi. Going to the grocery store is People-worthy news for her.
“RIP Angie’s boobs. You had options, dummy!” And what options would those be? Living in fear? Wondering if this year’s well-woman exam would turn up a lump? Hide under the bed and hope it all blows over? Who’s the dummy here?
“Angie cuts off her boobs, Brad’s gonna be f****** the nanny!” Yes, because nice boobs are the only reason a man would want to be intimate with a woman.
“What a waste of a bangin’ set of boobies.” The waste here is that this commenter is alive and breathing air while Angelina’s mother is dead from ovarian cancer.
“Angelina Jolie’s boobs have been removed…I’ll never smile again.” I’ll give this tweeter partial credit for being creative, but that’s it.
“Because you can never be too careful these days, with the cancer industry scaring women half to death at every opportunity. ‘My breasts might murder me!’ seems to be the slogan of many women these days, all of whom are victims of outrageous cancer industry propaganda and fear mongering.” Damn that cancer industry and its propaganda and fear mongering!
“Being an empowered woman doesn’t mean cutting off your breasts and aborting live babies — even though both of these things are often celebrated by delusional women’s groups. Being an empowered woman means protecting your health, your body and your womanhood by honoring and respecting your body, not maiming it.” Damn those delusional women’s groups. And I guess I missed the news story that Jolie had a late-term abortion as well as a mastectomy. Were they at the same time?? Did the “highly unprofessional” surgeon referred to in a previous comment perform the abortion, too?? Is that covered by insurance??
One of my fellow bloggers had a much more useful comment. When I read it, I copied it and pasted it, but forgot to attribute it, and now I can’t remember who wrote it. Apologies, ladies. If this is yours, please tell me so in the comments section so I can thank you properly. “There are no ‘good’ choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.”
Truer words are seldom spoken (or typed). While I’m a proponent of freedom of speech in general, I wish there were a rule that prevented idiots and mean-spirited fools from spouting off on something with as much gravitas as Jolie’s decision. I wish there were a policy stating “If you haven’t had cancer, your voice will not be heard.” I wish there were an amendment upholding the right of those of us who’ve lost a beloved member of our tribe to speak about the pain and grief and unfillable hole left by that person’s death. I wish there were a mute button to be used when people spew garbage about a situation in which they know nothing.
I really wish that everyone who takes the time to render their judgement and register their opinion on a total stranger’s wrenching choice would read Jackie’s post on this heated topic:
“I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words ‘You have cancer,’ or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.”
thank you, google images, for providing such lovely graphics.
sorry about the formatting; not sure what’s up with that.
I didn’t fall off the face of the Earth. It just seems that way. The Belly is still in business; thanks for your concern.
I had every intention of sitting down for a nice, rousing blog post over the last week, but life got in the way. It tends to do that. While the days were whizzing by and I remained blog-less, several ideas for posts meandered through my brain, but because I didn’t write any of them down, they’re now a swirling mish-mash of disjointed words and unattached ideas. Probably best to just start fresh. That’s what the New Year is for, right — starting fresh?
Being an overachieving busybody, I have tons of plans rattling around in my head. Yucky but necessary plans, like cleaning out my study and purging the stuff I don’t use anymore. Like touching up my kitchen paint, which has been nicked in many places as this busy little family has gone about its business over the last few years. Like repairing the wallpaper in the powder bathroom, which has started to peel in a few spots. It’s the only wallpaper in my house and I love it: big, lush banana tree leaves. Those giant leaves wrapping around that small space makes me smile, 8 years later. Lots of projects on the to-do list in addition to the everyday hub-bub of keeping my family up and running. After a long, leisurely winter break, my kids went back to school today (a somber affair that remained heavy and dreary despite the oh-so-rare appearance of a warm Pop Tart on each kid’s plate. Yes, I am that mom — the one who deprives her kids of sugary processed pastries for breakfast. Poor babies).
Besides a fresh start and umpteen projects, the New Year brings me perspective. Before looking forward and lurching headlong into 2013, I want to take a mo to reflect back on 2012. While 2012 had its challenges, it was a far cry better than 2011; that year and the one that preceded it were pretty stinky, with a cancer diagnosis followed briskly and cruelly by a nosocomial infection that would. not. go. away. Looking back on those dark days makes me shudder.
Many parts of that “journey” remain hazy in my mind. When I think back to that time, it’s almost as if I’m watching a movie. A really bad, really scary movie. I know that it was I who endured it, yet my brain tries to protect me from conjuring up the details. Thank you, brain. I remember bits & pieces of it all, but not the specifics. It’s not as if I’ve erased all the unpleasant memories; they’re just faded. When I go back to the month I spent in and out of the hospital because of that damn infection, I can recall the exact look of each room in each of the three different hospitals, but I can’t really remember what that time was like. I know there was a lot of hopelessness and fear, but if I had to describe it, I would fumble. If you were to ask me what it was like to undergo a bilateral mastectomy two weeks before my 41st birthday, I’m not sure I could come up with more than, “It was hard.”
If you ask me how it felt to have a wound vac attached to me 24-7 for weeks on end, my answer would be that I can’t really say. I remember how loud that damn thing was, and how cumbersome it was to lug it around. I remember my home-health nurse coming four times a week to clean the wound; I know she measured the depth, length, and width of that wound every visit, and compiled the stats in a handy chart that we used to hang on to a semblance of hope that progress was being made, that the damn thing was healing. I know she used an oversized, medical-grade Q-Tip to clean the wound, and that it was horrific enough that she recommended a xanax before each visit (for me, not her). I remember her using that giant Q-Tip to gauge how deep the wound still was, yet when I try to recall how it actually felt, I can’t. I guess that’s a good thing.
This time last year, I was trying to regain my footing as I negotiated life after cancer and that awful infection. I didn’t make any New Year’s resolutions that year, or this year. I’ve never been one to inscribe grandiose plans upon my new calendar. Perhaps it’s an effort to fly under the radar. To live a normal life. To step lightly around the sleeping beast that is cancer recurrence. To put as much time and distance as possible between then and now.
A dear friend of mine asked me to compile a list of things to know when facing a cancer diagnosis. A friend of hers is newly diagnosed with breast cancer, and so my friend turned to me for advice for her friend. While I am by no means an expert, I have walked a mile or two in the pink shoes, so here’s my list. Readers, please chime in with your advice.
1. Don’t panic. I know, easier said than done. Hearing the words “You have cancer” is scary, no doubt about it. No matter where you are in life, it’s the one thing no one wants to experience, and yet more and more people are finding their lives turned upside-down by cancer. The American Cancer Society estimates that more than 200,000 women in the United States will face a breast cancer diagnosis each year. Looking at your diagnosis, treatment, and surgery options may seem overwhelming, so break it down into manageable pieces.
2. Keep a notebook. Being a cancer patient is a full-time job, and like many other jobs, it involves a lot of paperwork. Get a 3-ring binder and some divider tabs and set up an organized system to track your pathology reports, insurance statements, notes from doctors’ appointments, and research. Ask for copies of everything from your doctors. Like it or not, you need to become your own advocate.
3. Figure out how much information you’re comfortable with and go no farther. I’m an info junkie and have a deep-seated need to know as much as I can about my cancer. I ask lots of questions at my doctor’s appointments and want to look at the ins and outs of all the issues. I watched videos on youtube of the different surgeries I would have (bilateral mastectomy with tissue expanders then DIEP reconstruction and several revisions to the reconstruction.) While a deluge of info works for me, others may prefer to work on a “need to know” basis and to take sips instead of gulps when it comes to the facts & figures of cancer. Decide what level you want and don’t venture beyond that unless you’re comfortable doing so. Also figure out how much of your story you want to share. I didn’t set out to write a blog, but found it to be the best way to update my peeps on my status. Once the cancer morphed from the star to more of a supporting role in my life, I realized that blogging about it is incredibly therapeutic for me. That’s a personal choice, however, so don’t feel that you need to broadcast your status.
4. Educate yourself so you can be the decision maker, then follow your gut. This is your show, for better or worse, and you must be the one to run it. While it’s perfectly acceptable to solicit opinions and to ask your docs what they would do if in your shoes, ultimately the decisions that must be made are yours. And there will be a lot of decisions to make. I remember wishing there was a manual for this part of the cancer “journey” that would tell me what to do. Alas, no such manual exists, so it was my job to weigh the facts when deciding on surgery and treatment. The decisions (lumpectomy vs mastectomy, chemo or no chemo, Tamoxifen for 5 years to reduce recurrence odds or roll the dice?) are big, and the stakes are high. Do your homework then trust your instincts.
5. You gotta love your doctors. Or at the very least, you gotta respect them. Even if your personalities aren’t aligned, you want to feel confident that he/she is the best at what they do. If you don’t love him/her or feel unsure about his/her abilities, keep looking. Ask for recommendations from people and doctors you trust, but then decide for yourself if it’s a good fit. One of the oncologists I visited came very highly recommended; everyone and their brother had been to this guy and respected him to the moon and back. I wasn’t crazy about him, though, and didn’t relish the idea of a long-term relationship with him. And his office was depressing — morose decor and outdated, muted colors that dragged me down every time I was there. This made me realize that I needed to look at the whole picture — does the office make me more nauseated than the proposed chemo? are the front office staff members courteous? does the waiting area suggest chaos or tranquility? what is the average time spent waiting to see the doctor? how responsive is the nursing staff to your phone calls, questions, or concerns? what system is in place in the event that my doc is unavailable? Remember that they work for you, not the other way around, and if you’re not getting the care you feel you deserve, you have every right to speak up.
6. Avail yourself of another set of ears. As much as I hated being dependent on others (see number 8 below), it was crucial to take someone with me to my doctors’ appointments. In the beginning, especially, there’s a ton of information being bandied about, and most of it is very emotionally-charged, technical, or hard to process (or maybe all 3); having someone else there to listen and take notes was a must for me. Even now, 2 1/2 years later, I still take my trusted sherpa with me to my checkups and often have to text her after the visit to confirm what the doc said about a particular issue. My brain gets very full very fast with all the cancer business, so I need my sherpa to lend me some of her brainpower, and my memory took a beating from the stress & strain of all the cancer fallout. Having someone else along to recall all the little details makes a big difference.
7. Talk openly with your kids, if you have them. They’re more observant–and resilient–than you think, and conversations about cancer will dominate your life at first, so trying to hide it from them is a bad idea. Explain it to them according to their age and ability to understand. My kids were 8 and 10 when I was diagnosed, and I told them that my doctor found a cancer in my breast that needed to be removed with surgery, but that once the surgery was over, the cancer would be gone and I would be around for a long, long time to harass and embarrass them. I said that I would need to lay down and rest a lot, but that it was temporary and once I healed, I would be ok. My 8-year-old accepted that as fact, while my 10-year-old asked repeatedly if I was sure I wasn’t going to die. He needed more reassurance, so I took him to my breast surgeon, who explained the same thing I’d explained, but hearing it from her, in a more clinical setting, reassured him.
8. Let people help. Man oh man this one was so hard for me. I don’t like depending on others, and I don’t like accepting help. However, I learned real fast that I needed to let go and get comfortable with delegating and giving orders. It was hard, hard, hard for me. But I realized that many people wanted to help, and that because they felt powerless in many ways, allowing them to bring a meal or pick up my kids allowed them to participate and made them feel good for helping. For those who are the ones wanting to help, a little piece of advice: don’t ask what you can do to help, and don’t say, “Let me know if you need anything.” I was so bamboozled by all things cancer that I didn’t know what I needed some days. Volunteer something specific, i.e., I’ll come walk your dog, or I’ll drive you to your doctor’s appointment, or I’m coming over to vacuum your house and fold your laundry.
9. Nix the pity party. Another great piece of advice from my amazing breast surgeon. She allowed that there would be days in which I didn’t want to get out of bed, but she put a time-limit on it. She gave me 3 days of wallowing, and said if I felt like I needed more, to come see her and we’d talk. It’s tempting to wonder, and even ask, Why me? But the answer inevitably will be Who knows? so ya might as well get up and get on with it.
10. Limit your exposure to anyone in your life who is negative or not supportive. Trust me, people will come out of the woodwork when they hear through the grapevine that you “won” the cancer lottery. You will likely hear all manner of advice and anecdotes, most of which are neither helpful nor amusing. Also trust me that you do not need to hear about how your next-door neighbor’s brother’s boss’s wife had the same kind of cancer you’ve been diagnosed with, and she was sick as a dog and bald as an old man all through chemo and then died a year later. I repeat: you do not need to hear this kind of talk. Distance yourself from anyone who brings that kind of junk into your yard. I had to tell a few people flat-out that their diarrhea of the mouth was not helping me and that if they couldn’t think of something constructive to say or something banal upon which to comment, they could just keep on walking. You will learn who your real friends are, you will likely make some new friends, and you may even find yourself outgrowing some friendships along the way. All of this is ok. Don’t be surprised if you have friends who can’t be bothered to listen to you vent or who are afraid that your bad luck will bleed over onto them. Don’t be surprised if you have a friend who backs out of a commitment to help you in your cancer “journey.” The sad truth is some people are fair-weather friends, and cancer can be a blustery wind that uproots the seeds of friendship. The good news is that cancer can also bring people into your life just when you need them most. Two of my dearest friends are those I was merely acquainted with pre-cancer, but whose kind hearts and fine character led them to me in my time of need, and by my side they have remained.
I 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.
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”
Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.
Come on, show of hands.
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.
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.
”It doesn’t happen all at once, you become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get all loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.” — Margery Williams, The Velveteen Rabbit
The Velveteen Rabbit is one of my all-time favorite books. I don’t recall reading it as a child, but I do love it as an adult. I was sorting through one of the never-ending piles of kid junk upstairs and found my copy of The Velveteen Rabbit. I sat down in the midst of my junk pile to re-read it. It had been too long; I certainly haven’t read it since breast cancer so rudely interrupted my otherwise-fabulous life.
The passage above jumped out at me, and stuck with me after I finished reading the story and got back to my junk pile. As I tossed worn-down erasers and fuzzless tennis balls into the trash and stacked some outgrown books for donation, I realized why that passage was stuck in my brain: it speaks to an issue near & dear to every cancer patient’s heart — the idea of being “done” and being able to get back to our “real” lives.
This is a recurring theme in the life of a cancer patient, whether stoic and methodical or impatient and impetuous. We want our real lives back. You know, the lives we lead before receiving the phone call from the doctor’s office that changed the course of our lives. In my case, it was a life of a million ordinary things — carpool, homework, packing lunches, making dinner, scrubbing infield dirt out of white baseball pants, playing tennis, and raising my kids. Those million ordinary things added up to make a full and contented life.
The life I lead now is quite different. So much so that I’m not even sure what my real life is anymore. I do know that in my pre-cancer life, anxiety didn’t plague me like it does now. I slept easily and soundly without visions of recurrence dancing through my head. I woke up each day ready to attack my to-do list and carve out a little time for me as well.
In my “real” life, my calendar wasn’t chock-full of doctor’s appointments, and now my life seems to revolve around them. Appointments for follow-ups after surgery, appointments to check blood work and feel for enlarged lymph nodes, appointments to monitor the prescription drugs that are a part of my everyday routine, appointments to stem the ever-present threat of lymphedema from the lymph nodes that were sacrificed during my mastectomy, appointments to plan the next surgery necessitated by a hungry cancer beast with far-reaching tentacles.
My “real” life wasn’t bifurcated into B.C. (before cancer) and A.C. (after cancer). Instead of marking time by the milestones of my kids’ lives, I now keep track based on which stage of the cancer “journey” I was in when said event occurred. To wit: Payton’s 11th birthday was 10 days before my bilateral mastectomy and the same day as my PET scan, to determine just how long this cancer beast’s tentacles were. The first Taylor Swift concert Macy & I attended was 2 weeks after the mastectomy. The post-mastectomy infection struck 5 days after my 41st birthday. Payton’s baseball team’s first trip to the State Championships coincided with the second hospitalization because of the infection. The weekend before Payton started middle school I was in the hospital again because of that damned infection. I had a bone scan the same day our new refrigerator was delivered. Payton’s first baseball game of the spring season was the night after my reconstruction surgery. School started 2 days before my first revision surgery. My second revision was 4 days before Halloween.
I’m trying to get back to my “real” life but am learning that some things will never be the same. Like The Velveteen Rabbit, becoming real again means my hair is different from the hormone-manipulation hell required for pre-menopausal cancerchicks. My eyes haven’t dropped out just yet, but my vision has changed (again from the hormones) enough that my Lasik surgery 7 years ago might as well never have happened. I’m for sure loose in the joints from the daily dose of Tamoxifen, and am getting used to the recurring bone pain as well. I am most definitely very shabby overall, with more grey hair and new wrinkles from the stress of life with cancer. Some days it’s hard to decide which has been battered more — my body or my soul.
And like The Velveteen Rabbit’s experience, it doesn’t happen all at once. It takes time. A long time. I’m not very patient, and much of this “journey” has been a true test of my limited stores of patience. They say it’s a virtue, but one that I don’t have. I’m still waiting to just become. Those 2 little words, “You become,” represent what I’m working toward in getting back to my “real” life. It definitely doesn’t happen to people who break easily. Cancer is a mean and vicious enemy. Many times on this “journey” I’ve heard myself saying out loud, How much more do I have to take? And the answer has always been, I don’t know how much, but more. Always more. If I were one who was easily broken, I’m not sure how this story would have played out. Most likely, I’d be in a 12-step program for Oxycontin addiction. Or I’d be a repeat visitor to the Betty Ford Clinic. What I do know is that there’s always more. And that it’s a daily battle to get back to “real.”
Summertime, and the living is easy. Sam Cooke said it, well, sang it actually, a long time ago. The fish were jumpin’ and the cotton was high. The girl he was singing to had a daddy who was rich and a mama who was good-looking. All was right in Sam’s world.
Well, the living is easy all right. No alarms waking me up before I’m ready, no lunches to pack. Payton’s lunch is easy: sandwich, bag of baked chips, string cheese, Rice Krispie treat, and a drink. No lunch box, no ice pack — he’s too cool for that. Macy, on the other hand, is quite particular about her lunch, requiring 5 different things, some of which must be washed & chopped and placed into small tupperware. She does at least take the same thing every single day, much like her mama did as a schoolgirl. I had a homemade egg salad sandwich on wheat bread every day of my schoolgirl life, and didn’t care one lick that the other kids thought the egg salad looked gross and the brown bread looked weird. They could have their stick-to-the-roof-of-your-mouth Wonder bread PB&J any day. I was perfectly happy with my gross-looking egg salad on weird-looking bread.
So no lunches to pack, yea. No mountain of school paperwork to wade through, only to find that other than glancing at the grades at the top of the completed work, there’s not a single thing in that mountain that really matters. No racing the clock to get out of bed, gobble down breakfast, get dressed, and get out the door. No meanie mom enforcing a highly unpopular bedtime so the little darlings don’t act like feral hogs in the a.m. Last but not least, no school projects. Oh, how I despise the projects. After 18 years of living with the original slacker student, who did minimal work and gasp! even skipped school projects altogether yet made good grades and somehow managed to become a contributing & successful member of society, my opinion on school projects has definitely changed. Changed to hatred, that is. They’re messy, time-consuming, inane, and require ME to go to Hobby Lobby AND help with said project when I could be playing tennis.
Ok, rant is over.
I certainly hope I didn’t offend any teachers out there. If I did, please direct your hate mail to my husband, the original slacker student. It may take him a few days to reply, because he’s busy running a software company. I’m not sure he could have risen to such heights and attained 2 graduate degrees without that pivotal diorama he made in 3rd grade at Jenks Elementary.
Ok, now my rant is over.
So we are blessedly free of the strict schedule imposed by the Fort Bend Independent School District, and most thankfully free of the blasted school projects. We can go where we want to go when we want to go there, stay up late, and eat lunch when we please. All that sounds great, right?
Except for one tiny detail: I don’t do well with unstructured time. Remember me, the busy-body? I don’t blossom with a lot of downtime. It’s day 3 of summer, and I’m already feeling a little itchy, a little twitchy. As much as I dislike the hustle & bustle of the imposed school schedule, it does keep us on track. And I like that. I need that. I would have been great in the army.
Lots of people enjoy their downtime and get into being lazy. For me, laziness makes me feel icky. I really like having a to-do list every day and relish the feeling of being productive. Some people were laughing at me that on the first day of summer, I cleaned out the garage, did 4 loads of laundry, vacuumed the entire downstairs, and bagged up discarded clothes for donation. Before lunchtime.
Now that my kids are a little older and a bit more independent, summer isn’t as stressful because I can still get my stuff done without having to watch them every second. The ever-present possibility of a toddler finger in a light switch cramps my style and interferes with me crossing things off my to-do list. With the luxury of semi-independent children, I’m trying to relax more this summer. That, and the burning desire to suck every drop of summer this year, since last summer was such a bust.
Last summer, I was not only recovering from a bilateral mastectomy but also playing hostess with the mostess to a nasty, long-staying bacteria that exploded into a messy, hard-t0-diagnose-and-even-harder-to-eradicate infection. I spent some extra time in the hospital, multiple times and multiple hospitals, and had a few extra surgeries. I weathered the ups & downs of being an impatient patient, and learned the hard, hard lesson that no matter how nicely I treat my body, it can and will betray me. As my sweet mama would have said, “That is rude, crude, and socially unacceptable.”
Last summer I missed out on a lot, thanks to Mr. Mycobacterium. This summer is going to be different. I’m going to spend some idle time, and hopefully learn to like it. I’m going to float in the pool with my kids and my crazy dog, and not worry about the laundry piling up or the dishwasher needing to be emptied. I’m going to teach my kids to cook, and not stress over the messy kitchen. I’m going to drag them away from the TV and computer games and into the museum district, and not get discouraged when they complain about how boring it is.
However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.