I know this probably isn’t news to those of you who follow me on Facebook and Twitter, but in case social media’s just not your thing, I thought I’d put an update here, too…
Monday my first post went live on the CURE Magazine’s online community! CURE Magazine is resource for cancer patients, survivors, and caregivers. You can pick up a copy in an oncologist’s office, and they offer free subscriptions if you fill out the included subscription card. I’m not in the print version (yet! One can always dream!) but they approached me a few weeks ago to contribute to the online community of writers, and I couldn’t be more thrilled. Being part of this publication means that people who truly understand my point of view or might benefit from my experiences will be the primary audience, and that’s huge! The piece that I wrote for them this week is a brand new piece– The Indignity of Breast Cancer. Though I’ve never been to New Orleans in March, it’s a little story about how I’ve earned more than 100 pair of Mardi Gras beads the good old fashioned way! (And why I’m totally ok with that.)
Wednesday I was featured on Scary Mommy, a collective blog that’s described as “A parenting website for imperfect parents” and “is intended for people who have a sense of humor, an appreciation for sarcasm, and wear panties that don’t easily get in a wad.” Sometimes irreverent but always funny, I enjoy reading so much of what they feature. They picked up my post from a couple weeks ago– “Ten Things Breast Cancer Taught Me” and republished it this week with a really cheesy stock photo of ladies wearing pink shirts. But still, they published it! Though they may not be my target cancer-y audience, they have a huge readership, so being featured on their site was super cool!
I’ve posted links on the right– the blue CURE Magazine logo will take you to my community page, so as I post more there, it should link to a list of all my articles there. And even though there’s just one Scary Mommy post, I’ll probably leave their signature crown up forever because it’s so cool! If you haven’t read them already, check them out!
Well, kids, it’s finally happened. I went to a major sporting event in October. The family headed to Morgantown, West Virginia to watch Clay’s Oklahoma State Cowboys take on the Mountaineers in football. We got there early and Emma Clare, who has just made the Swanson Cheerleading Squad, had a blast watching the cheerleaders from both teams before the game. Always one to notice accessories, she pointed out very quickly that perhaps the WVU cheerleaders were wearing pink hairbows and using pink pom poms for breast cancer month. I nodded, and muttered to her that if her cheerleading squad ever wanted to participate in Breast Cancer Awareness Month, we were going to make sure that they did more than just use pink pom poms. (Would love your ideas on that one, but free babysitting services for patients with young kids might just be up there on my list!)
During the game, they highlighted one of the doctors from the university’s breast care center and of course had the obligatory moment when they had a handful of breast cancer survivors on the field wave and get some (pink, of course) roses. I have nothing against anyone honored like that. Those ladies were treated like queens for the day and had a blast, and should the St. Louis Cardinals need anyone to honor, I’m your girl! Just sayin. After that, they asked anyone in the stands who was a breast cancer survivor to stand to be honored as well. I sighed as I heard my mother in law and daughter’s cheerful words, insisting, “Stand up! Stand up!” They were proud of me, they love me. So I stood. (Very briefly.) I’m not sure why it felt weird. But it did– standing with everyone clapping felt weird. And then Emma Clare summed it up perfectly. “That’s an awfully big deal just for staying alive.”
Clay assured me that even though it felt weird, they were, in fact, quite glad I did manage to stay alive. With nearly 40,000 women dying of breast cancer every year (that’s 108 women every day) I guess just staying alive is kind of a big deal. It makes me very thankful to those who have gone before me– researchers, clinicians, and especially those who have participated in clinical trials– who said yes— making it possible for me to stand with all those other people who stayed alive. But more than that, it makes me long for the day when research has come far enough that it’s just not that big of a deal to manage to stay alive.
It’s been a while since we had a hair post, no? Since it’s been three years this week since my diagnosis, I thought it might be fun to see how my hair has changed each October…
- October 2012: That’s how my hair looked when I was diagnosed. Gorgeous, right? I know they were all just being nice, but at one point I thought I was going to cause physical harm to the super sweet nurse who must have been the twelfth medical professional that week to tell me that my hair was beautiful. It was all I could do not to remind them that I was there because I had been diagnosed with breast cancer. I mean, they all got that it was about to fall out, right?
- October, 2013: Just six months of growth after chemo and it was so dark and stylish! Instead of words like beautiful, people now told me that I looked strong and fierce. Man, I loved that hair, and I loved being strong and fierce! It’s funny how people assume things about your personality because of the way you choose to wear your hair. (And I loved feeling like I could pull off such dark lipstick–that Nars 413BLKR, was a go to back then!)
- October 2014: I snapped this before heading off to a conference on 3D mammography. That was admittedly the start of a rough hair year. I had to fight the weather girl vibe on a daily basis and eventually went to a flat-ironed spiky look most days to avoid the over rounded coif that my hair apparently prefers.
- October 2015: The light at the end of the tunnel! I’m pretty sure I had my hair like this once on purpose! It’s still a little short to get into a ponytail without too many little clips holding in stray pieces, but it’s pretty much a normal hairstyle for me now. I don’t hate it every minute of the day, and that’s major progress. It’s lightened up, too, thanks to time spent outside with the kiddos and my running buddies.
I guess I have to count it a win that I was happy with my hair in three out of four pictures… I’m on my way back to the first ‘do. If I ever make it, please don’t tell me that it’s “so 2012.” I think my family would still love for me to get back to the old pre-cancer me for a while, and I’m finally close enough that it seems possible. I just hope they don’t totally revolt when I decide I’ve had enough of the blow outs and curling iron and chop it all off for the 2013 look. But who am I kidding? At that point, they can revolt if they want. Because the next time a huge pile of my hair ends up on the floor, it will be by my choosing, and I think I’ve earned the right to pick my own hairstyle!
Thanks to Sally Brewer for the 2013 picture and Crystal Hardin for capturing the 2012 image just two days before Dragan shaved my head.
Three years ago, I went from being a scientist and stay at home mom to a breast cancer patient in what seemed like a heartbeat. Chemo and a double mastectomy with reconstruction have taught me a few things that doctors never could. If I could go back three years, this is what I’d tell newly-diagnosed me…
- You will get over your modesty very quickly. I’ve never been part of a flash mob, but I’ve definitely flashed enough people to constitute a mob! Best estimates are that I’ve flashed well over 100 people since I was diagnosed. (Yes, I counted.) My body went through so many changes during my treatment for me to share with professionals and curious friends alike. There was the port– the weird alien-like device implanted under my skin to deliver my chemo meds, my mastectomy scars and drains, final implants and even my first tattoos— trompe l’oeil nipples!
- You will be in awe of how much you are loved. Your family, close friends, friends you haven’t seen in years, people you don’t even know will rally to support you in ways you could never imagine. They’ll bring you meals and watch your kids.You’ll return home to find cupcakes and magazines with thoughtful notes on your doorstep. Your days will be filled with coffee dates, and your friends will fight for the opportunity to join you at a four hour chemo appointment. Your out of state mom will send you a fabulous pair of flats to wear to chemo because she knows your love language is shoes. You will be overwhelmed with gratitude.
- You will see breast cancer everywhere you look. Remember when you were pregnant and it seemed like every woman you saw was pregnant, too? Especially if you share my extreme misfortune and are diagnosed in October amidst breast cancer awareness month, you will see pink ribbons everywhere. At the grocery store, they’ll ask if you want to round up to donate for breast cancer. You will fight the urge to tell them that you gave at the office. Or that you’re giving two breasts and a full head of hair. You’ll keep your forty-two cents, thank you very much. Instead, you’ll probably just smile and say, “Thanks, not today.”
- You will learn that immediate reconstruction is not immediate. I remember thinking how great it was that surgeons could completely reconstruct a woman’s breasts at the time of a mastectomy. I didn’t realize that “immediate reconstruction” actually means “starts at time of mastectomy and finishes with at least one more surgery sometime in the next year or so.”
- You will become obsessed with other women’s breasts. Once you’ve had a breast surgery or two, you kind of forget what normal breasts look like. What you see in the mirror is not necessarily bad, in fact it may be great. But it’s not normal. You will begin to examine other women to see how your breasts compare to theirs. (You will hope they don’t notice this.)
- You will talk about things like drains, mouth sores and nipple tattoos all the time and in the strangest places. Like new moms form an instant bond discussing the trials and triumphs of new motherhood, you have an immediate connection with anyone who’s been through a breast cancer diagnosis. You will also have these chats with everyone from your neighbor to your dental hygienist to an elderly stranger at Starbucks, because when you’re bald, these kind of things just come up.
- You’ll wish you had more pictures. No, really. Nothing reminds you of how far you’ve come than seeing where you started and where you’ve been. Plus, pictures smiling with your kiddos, spouse, or friends are a great reminder of how much you’re loved.
- You will find that you didn’t realize how important breasts really are, even if you’re done using them to feed babies. Your surgeon will tell you early on that you won’t have any sensation and you will nod, thinking of nothing but getting rid of the cancer. You won’t realize the significance of losing sensation. Not so bad not to feel the needles of the tattoo artist recreating your nipple. Sometimes devastating not to feel the gentle touch of a husband’s hand or a child’s nuzzle.
- You won’t need to wear a bra! You may think you will anyway, but since it’s tough to find one that fits, you will likely get used to going braless pretty quickly. Your BFF will probably insist that you try on every strapless and backless top that you see when you’re shopping “because you can.” (And you will totally rock them!)
- You may never again have “just a headache.” Every little ache and pain will make you think your cancer is back. Hip pain? Cancer. Menstrual cycle two days short? Cancer. Forehead pimple? Obviously cancer. BUT, you will get used to it. You will be surprised when you go an entire day without thinking about cancer, or when you forget to mention to a new doctor that your nipples aren’t real. Yes, you will be different, but you will get used to the person that you are.
The most sobering thing I learned is that roughly 30% of women diagnosed with early stage breast cancer will develop a recurrence– metastatic disease– that will ultimately claim their lives. While women with breast cancer are living longer and stronger, 108 women still die of breast cancer EVERY. SINGLE. DAY. The patient in me wants you to understand the personal side of the disease, but the scientist in me wants you to know that women with metastatic disease are depending on the breakthroughs that medical research provides to keep their lives from being cut tragically short.
I can hardly call it writing, but the next summer project on my list just showed up on newsstands! The first thing I did when I got a request this summer from Women’s Running magazine was call Sally to make sure that I was right– this is a legit magazine! Like one you can buy in stores and everything! They asked to feature me in their “Bloggers on the Run” series for October. Because breast cancer. Ironically, they took the text from some interview questions they asked me, and there is no mention of breast cancer in the piece! But since it’s sprinkled in between pictures of women showing off their pink running gear and pages of ads featuring pink ribbons, I’m guessing anyone who’s interested will make the assumption. I didn’t really get to share anything new or shocking, but it was fun to see my face (on a bald head, no less!) in a running magazine (who’d have ever guessed?!?) and perhaps it will give a runner facing chemo the confidence to keep on running. Head to your newsstands and check it out or read it here! (I picked up my copy at Barnes and Noble, since the selection at my local drugstore was too small to carry anything not related to home decorating or fashion and makeup!)
I saw a friend over the weekend who told me she was so happy I’m posting on the blog again. (Hi, Julie!) I have to admit to being a bit of a blog slacker this summer. Somehow, I’d think an eight year old and an eleven year old would be easier than toddlers– they can do so much on their own now, it seems like there should be less for me to do, no? I know all of you parents just a few years ahead of me already know this, but the activities ramped up like crazy this summer and I felt like I was going from one thing to another all summer long! Things like thinking and writing (and showering– the pool counts, right?) kind of took a backseat.
I know that I didn’t post here over the summer, but that’s not to say that I wasn’t doing anything. The bookends to my summer were grant review sessions, one of which required quite a bit more prep than the Department of Defense Breast Cancer Research Program study sections I’ve done before. I spent some time chatting with an early career researcher who has some super exciting ideas, and I’m getting a little closer to figuring out what I want to be when I grow up and how to get there.
One of the writing projects I worked on was for part of a how-to series that the American Association for Cancer Research has on their Advocacy page. I was invited to write a “How To Share Your Story” post for them, and it was such an honor to have my writing featured by such a prestigious organization. For me, seeing my story featured on their advocacy page felt a bit like how I imagine a Broadway star feels seeing their name in lights! I explained a bit about why I started this blog and how it’s changed in the almost three years (gracious, time flies!) since I was first diagnosed with breast cancer. As it’s a how-to series, I also gave a few pointers to anyone interested in sharing their own story. The quick summary: if you don’t want to go the GoDaddy route and pay for a site, there are a lot of free options with varying privacy settings and they’re all pretty easy. Think about your audience when you write, and be yourself. If you want the more detailed version, head over and read the whole thing on the AACR site.
And stay tuned, as my other summer projects go live, I’ll be sure to fill you in! Happy fall, all!
So it turns out that seatbelts and mastectomies don’t always mix well. A couple of years ago, fresh off my mastectomy, I found this little gem at an auto parts store and found that it really did help me be more comfortable. It’s hard to believe that it’s been over two years since that discovery. Since that surgery. I’d hoped I might “grow out of it,” but I still have some nerve issues that make a seatbelt cutting between my breasts (especially on the driver side) irritating. It’s not that big of a deal driving around town, though I find that I pull the seatbelt away from my chest instinctively at this point most of the time.
As we headed out on our first long road trip this summer, I knew comfort was going to be key, so I put on a loose comfy tee and a pair of running capris, and we set out. I quickly figured out that a loose tshirt and a seatbelt, even with its cushioning, was a bad combination for me. By the time it was Clay’s turn to drive, I thought I was going to come out of my skin. It took nearly my whole shift as passenger to get comfortable again, and then I had to shift back to the driver’s seat.
Thankfully I had taken along a sports bra or two in case I wanted to get in a run (ha! It was WAY too hot!) and so I put that on for the ride home. The difference was HUGE! I don’t have to go for a lot of support, but the way that a sports bra creates sort or a flat surface keeps the seatbelt from getting between my breasts and irritating me. While I still pulled the seatbelt away reflexively, I was actually comfortable even when didn’t. I’m not convinced that I need a sports for actual sports (though it feels too weird not to wear one!) but apparently, they’re my new must have for road trips!