Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. This is my favorite girl today.
I know, right??? How does that happen???
Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.
She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.
Feelings. The dreaded feels.
I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)
Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.
When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.
That will happen, right?
Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.
I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.
I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I should know damn good and well that there is no end. So why do I keep looking for it?
On this day 48 years ago, an accomplished and driven schoolteacher from humble, rural beginnings married a confident, athletic Greek who was making his way in the petroleum engineering industry. The mother of the bride had passed away nearly 15 years before this wedding. The father of the groom, who had immigrated to the United States from Greece with limited funds and even less English in his vocabulary, died before being able to watch his son’s life unfold with his new bride.
That bride’s life was cut short, too. By cancer. Stupid cancer. While that bride lived to see her son and her daughter into adulthood and she welcomed and adored four grandchildren, her life–and her marriage–ended too soon. Stupid cancer.
That bride was my sweet mama, and I miss her dearly every single day. I’ve written about this topic in this space a lot. And I will continue to do so. I know my dad misses her every single day, too. He still refers to her as The Bride. In caps. I’m sure he’s missing her even more than usual today. Because today he should be celebrating with The Bride. They should be celebrating 48 years of marriage and a life full of happiness. She’d be laughing right now, recalling her simple wedding and her sweet pale yellow suit and pillbox hat. She’d be self-effacing about the number of years that have passed and the wrinkles etched in her face and the extra pounds settled around her middle. She’d be tempted to surrender the battle against the grey hair, but would continue seeking the ash-blonde color. And she’d be infusing our lives with her unique blend of meddling, hovering, and loving.
Yesterday was BRA Day. No, not wear a bra or burn a bra day but Breast Reconstruction Awareness Day. Yes, more awareness. Yay.
I didn’t write about this yesterday so I’m a day late and a dollar short. A maybe a cup size short. Or maybe just short.
I was hoping that by waiting a day, I would have something nice to write about BRA Day. I was hoping that by waiting a day, I’d be able to focus on the potential for positive transformation via reconstruction, instead of thinking ugly thoughts about how wrecked most women feel after breast cancer, whether from a lumpectomy, a single mastectomy, or a bilateral mastectomy.
My feelings about BRA Day are mixed. Rather like my cup size. Initially, I braced myself for more “awareness.” It’s no secret that I’m not a fan of all the breast cancer “awareness” out there (click here or here or here or here for the latest rants), and the month of October wears me out. Big time. However, awareness about reconstruction options is a good thing. There will be no ranting about awareness for reconstruction options. That said, do we need to declare a national BRA Day to get the reconstruction information in the hands of those who need it? Why isn’t it standard protocol for a breast surgeon to educate patients on reconstruction? Why do we need an entire day, with a national spokesperson (Jewel, the singer, who has written a special song especially for reconstruction patients)? Why must breast cancer patients/warriors/survivors be accosted every damn day in the month of October by yet another reminder of cancer?
I’m very fortunate to live in a city in which I have access to crazy-good surgeons and top-shelf medical institutions. My fabulous breast surgeon made the effort to inform me of my reconstruction options, so I knew what was on the menu. She works closely with a couple of plastic surgeons, and she makes it easy for her patients to follow the trajectory from mastectomy to reconstruction. Because I have type-A tendencies, I explored the reconstruction options, asked countless questions, and sought out information, no matter how gory. Watching youtube videos of actual surgeries, albeit with one eye shut sometimes, is de rigueur for me. I know this is not the case for all women with breast cancer. I am counting my blessings here, if one can use the word “blessings” in the context of cancer. Those of you who’ve been there know what I mean (blessing: we caught it early! reality: there was something to catch; blessing: your cancer is located in a body part that’s easily removed! reality: there’s cancer that needs to be removed, and your body will never be the same; blessing: you’re young and healthy! reality: I had both breasts cut off at the age of 40 while tending to an 8-year-old and a 10-year old; blessing: you’re so strong and able to handle this challenge! reality: the rigors of cancer never let up, no matter how strong one is; blessing: your cancer is so treatable! reality: regardless of treatability, cancer is cancer and it sucks).
But I digress.
Before I go any further, let’s be clear about one thing: while I’m not satisfied with the results of my reconstruction, my surgeons have done amazing work, and I wouldn’t have chosen a different option. Ok, so I didn’t have any other options, because I had a barely-contained, rare infection and needed to shore up the sunken, excavated chest wall with some healthy, vascularized tissue, aka The Big Dig. I showed up with a hot mess of a post-mastectomy chest wall that went from bad to worse to even worse to holy hell, can it get any worse? and my docs transformed it to pretty damn good, considering from where we started.
Before the infection ruined the post-mastectomy party, I was planning on the “standard” reconstruction, which involves having tissue expanders put in during the mastectomy surgery, then filling the expanders with saline every week or so to stretch the skin, then replacing the expanders with implants once the skin is stretched. The skin must be stretched post-mastectomy, unlike in a breast augmentation, because the skin, fat and tissue have been scooped out by the mastectomy in an effort to remove all the cancer. It’s not the same as plopping a set of implants in a regular chest. I read up on the other forms of reconstruction but didn’t study them intently because the expanders-to-implant route seemed like a done deal. Once the infection entered the scene, however, I learned a lot about the other options.
Apparently I’m in the minority of women regarding reconstruction options. According to the BRA Day website, not every woman has a stellar breast surgeon who lays out all the deets, good, bad, and ugly, and 70 percent of women undergoing breast cancer surgery are not informed of their reconstruction options, and only 23 percent of women know that there’s a wide range of reconstruction options. Scarier still: only 22 percent of women are briefed on what to expect post-reconstruction. What??? I spent a lot of time looking at before-and-after photos of the women my surgeons had operated on, at my surgeons’ insistence. I consented to become one of those before-and-after photos and am happy to know that other women can see those photos so they know what to expect.
The BRA Day website gives an overview of the different types of reconstruction, and presents the information in little sips instead of overwhelming gulps. There’s even a handy chart for comparing the pros and cons of different types of reconstruction. This could be very helpful when trying to process heaps of information, most of if scary and difficult to hear. I’ll give the BRA Day website credit for laying out the information in an easy-to-take format.
One thing that’s missing from the website, though, is information on The Women’s Health and Cancer Rights Act (WHCRA). There’s a reference to the cost of reconstruction on the BRA Day website, but it doesn’t mention that there’s a federal law protecting women from being denied coverage by their insurance companies. The law has been on the books since October 1998, and says that group insurance plans that cover mastectomies must also cover reconstruction.
Now, here’s what I really hate about BRA Day (you knew this was coming, right?). The name. Like so much about breast cancer, and especially breast cancer “awereness,” BRA Day tries to direct the focus away from the disease and back to the breasts. It’s sexy! It’s glamorous! It’s pink and pretty! It’s all about the boobies! Sheesh. Here we go again.
I’m not crazy about the fact that BRA Day is sponsored by plastic surgeons. I happen to love and admire my plastic surgeons, and I am ever so grateful for the work they do for women who’ve been royally screwed by breast cancer. But the fact that the American Society of Plastic Surgeons and The Plastic Surgery Foundation sponsor BRA Day makes me a wee bit skeptical.
And finally, I’m bugged by the fact that BRA Day, a worthy and necessary happening, can so easily be conflated with No Bra Day, which is “celebrated” either July 9th or October 13th — or maybe both — and is neither worthy nor necessary but instead bombastic in its emphasis of breasts.
Maybe I’m just worn out by Pinktober, and maybe I’m run down by the realities of the cancer “journey,” and maybe I’m disappointed that no matter how good reconstruction is, it can never replace what’s been stolen by cancer.
The world has suffered a huge loss today. Not because he was famous, or rich, or any of those externalities. But because he was a game-changer. Steve Jobs set out to change the world, and he did just that. In ways big and small, he did just that.
Not only did he bring to the general public some of the most useful products of my generation (iPhone, iPod, etc), he encouraged a nation of people to be better. At whatever they do. He gave commencement addresses that inspired me, and I’ve never been in his audience. Speaking at Stanford to the class of 2005, he said:
“Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle. As with all matters of the heart, you’ll know when you find it. And, like any great relationship, it just gets better and better as the years roll on. So keep looking until you find it. Don’t settle.”
And don’t sit still — he wasn’t a fan of resting on one’s laurels (and if anyone could have rested, it would be him). But that shows just how special he was, that he wasn’t satisfied with having done enough, he wanted to do more. On the news one night in May 2006 he said, “I think if you do something and it turns out pretty good, then you should go do something else wonderful, not dwell on it for too long. Just figure out what’s next.”
Sadly, there is no “what’s next” for Jobs, but his legacy will live on.
To say that he was a visionary seems trite, insufficient, but it’s true. I love that he knew what the public wanted, in terms of Apple products, so well but wasn’t cocky or full of self-importance. This quote in BusinessWeek in May 1998 sums it up: “It’s really hard to design products by focus groups. A lot of times, people don’t know what they want until you show it to them.” True, so true. If someone had described the iPhone to me before I had one in my hand, I wouldn’t have gotten it.
I’m not a gadget-y person. I don’t like stopping long enough to learn how to use something but prefer to dive in and figure it out as I go about my busy day. I’m not a reader of manuals, but that’s the beauty of the Apple products, and of Jobs’s insight into product design: you don’t have to figure it out because the device figures it out for you. Jobs truly understood how to show us what we want and need, without it being about him, about Apple, about financial success. He seemed to really care about doing great things. Way back in 1993, when I was a newlywed without a cell phone, an iPod, or an iPad, Jobs told the Wall Street Journal: “Being the richest man in the cemetery doesn’t matter to me … Going to bed at night saying we’ve done something wonderful … that’s what matters to me.”
My most favorite thing about Steve Jobs was his attitude toward the innovators all around us. You don’t have to be CEO of one of the most successful companies in the world to be an innovator and affect change in your life, and Jobs spread that message far and wide. I happen to live with a 9-year-old who follows the Jobs model. While I admit I’ve often thought if she were more like other little girls, it sure would make my life easier, but that’s short-sighted and temporary. Yes, buying a Disney Princess costume would be much easier than figuring out how to bring Domo to life, but that’s not her. And I’m glad. Just like it’s not her to choose a “normal” job to research and present to her class in a career day speech. While the other kids see themselves becoming nurses, MLB players, dancers, and electrical engineers, my little innovator chose the lead singer for KISS. In all seriousness. It never even occurred to her that this is wacky or unusual or “out there” because that’s how she rolls. She wasn’t looking for giggles or shock value; in fact, she probably wouldn’t care if others thought it weird or unusual or shocking that she wants to be the lead singer for KISS. She can’t sing, but that doesn’t stop her from thinking this way. It was hard to keep a straight face as she practiced her speech in her jammies the night before delivering it, as I marveled at her “outside of the box” self.
I think Steve Jobs would have approved. I think he and my girl would have liked each other. I can see them hanging out, talking about crazy stuff like a tiny device that can hold all your music, so you can listen anywhere as you do whatever you want. Like a home computer with a processor half the size of a shoebox but with plenty of computing power. Like a computer application that allows you to make and edit home movies good enough to be shown on the big screen. Like a fully functioning personal computer you can carry in your pocket. Like a Japanese anime character costume that weighed 20 pounds, was covered in industrial-strength carpet, and induced heat strokes in small trick-or-treaters but was so kick-ass, so rockin that it inspired people to hand out extra candy, to give a big handful of the good stuff as a means of awarding extra credit for creativity.
Sadly, my girl will never meet Steve Jobs. Not because he’s rich & famous and we’re ordinary people. Not because he lives all the way across the country. But because he’s dead. Because cancer stole him from us at age 56. I’m so sick of cancer. I’m sick of it in my own life and those of my friends in the blogosphere. I’m sick of it in the lives of the rich & famous whose deaths from it become magnified on TV, on the Web, and in magazines. I’m sick of it in my own family, where it stole my sweet mama and two of my favorite aunts (happy birthday, Thea Sophia; you may be gone but I still remember October 6th. Miss you).
And Steve Jobs, I miss you too. Thanks for changing my world, and for making it ok for people like my little girl to be different. May she follow your lead and change the world in her own way. I will share your quote about the crazy ones with her as she grows up and (hopefully) remains a square peg. RIP, Steve.
“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes…the ones who see things differently — they’re not fond of rules. You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things. They push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.”
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” — Eleanor Roosevelt
Well, I did indeed live through the horror (or horrors, if we’re counting the previous surgeries, procedures, and nastiness), so I guess I can indeed take the next thing that comes along.
That next thing better be something good.
It’s been a long road, and while a lot of people have even longer and more pot-hole-filled roads, I’m thinking only about mine right now. I’m still recovering and can be selfish like that. I won’t ride that wave too long, or play that card too often, but for today, I’m thinking about my road and no one else’s.
I really like the quote above from Eleanor Roosevelt, and thank Susan Christopherson for passing it along to me in the early days of my “cancer journey.” In those early days, I had no idea that the diagnosis and mastectomy were going to be the easy parts, that a nasty infection would make those previous experiences seem like a walk in through a rainbow-infused meadow with my pet unicorn. Ha!
Another quote of Ms Roosevelt’s that’s always been a favorite of mine is “A woman is like a tea bag. You never know how strong she is until she gets into hot water.” True dat.
I’ve had a lot of comments about my fearless attitude, and some people have kindly suggested that my sunny outlook has helped propel me through this “cancer journey” without much trouble. If you want to know how I do it, the answer is: I don’t know, it’s just what you do.
I grew up with the “it’s just what you do” principle, and maybe it’s like freckles or pigeon toes–you either got it or ya don’t. My parents did instill that principle, and they did a good job, so it took. I certainly don’t wake up every morning with cartoon birds singing out my window and little woodland creatures bringing me my robe & slippers (although that would be pretty cool). If they could bring me a skinny latte, that would be even better.
I suppose there are two ways to face a horrifying situation: head-on, like Ms. Roosevelt suggests, or with your head buried in the sand. I’m a head-on kind of girl, and the head-in-the-sand approach has never worked for me. I kinda admire the people who can do that, though, because it seems a lot easier. But here’s the thing: no matter how you face a scary situation, it’s still scary.
Cancer didn’t make me brave. I don’t think it’s a gift (as I’ve written about before, and will continue to rant about at any given time, so get used to it!). Good things can come from a bad situation, but the bad situation does not magically become a good thing.
The truth of the matter is that cancer sucks. Whether it’s an early diagnosis and best-case outcome or late-stage and aggressive, it just sucks. There are untold ways in which it sucks. And there are innumerable ways in which it affects your life and body. For me the scariest and suckiest thing about cancer is that once you have it, you can do everything right and face everything head-on with no guarantee that it will all work out ok. That’s just not right. Our society is based on the idea that if you work hard, you will propser. The American Dream, right? Well, cancer doesn’t subscribe to that idea. It’s random, and vicious, and unfair.
But guess what? We don’t have to fear it. Yes, it is one of the worst things that can happen. Being diagnosed (with no family history) at a (relatively) young age was a serious sucker-punch. My world has been topsy-turvy for the last 10 months. But as my sweet friend and survivor sister Jenny reminds me, it’s temporary. In fact, she was kind enough to make me a poster right before my reconstruction last week to reiterate that idea. I wanted to take it to the hospital with me, but the extreme heat of the ICU room would have melted the glue dots and cute sparkly stickers.
Jenny has reminded me from day one of my “cancer journey” that it is temporary, which means I can endure it. I can get through it. Some days I’ve questioned that, and Jenny has texted me a simple message: it’s temporary. Knowing that removes some of the fear and shifts that balance of power from cancer back to me, where it belongs.
Saw this coming out of the Gap last night and was compelled to stop in my tracks and take a picture — even though the owner of the car was standing right there looking at me like I was a wack-o. I’m pretty sure she didn’t want to get started on a conversation with me, of all people, on the myriad ways in which cancer does indeed suck. We might still be there, standing in the parking lot of First Colony Mall, me a bit winded but still mighty revved up, her wondering what on earth she possibly could have done to deserve this and desperately trying to think of an excuse to get the hay outta dodge.
But I digress. The topic today is how many ways cancer sucks. There’s the obvious: it kills people. There’s the more subtle: it may not kill ya, but it’s serious. There’s the financial: it’s expensive. There’s the practical: it’s time-consuming and draining. There’s the physical: it’s far-reaching in its ways to mess your body up (and it causes me to end a sentence with a preposition, something I am loathe to do). There’s the existential: what is the meaning of this? There’s the guilt: Why me? (or why me, and not someone else who’s really pretty bitchy?) There’s the sad: it’s just sad. There’s the depressing: it’s hard to stay cheery in the face of all this. There’s the hopelessness: you can do everything right and still get burned.
And that’s just what I came up with real quick off the top of my head, but I think I’m on to something.