Just Me

Before we headed out on our photo shoot a couple of weeks ago, I was looking around on pinterest for some things to put on my Run Lipstick Chemo pinboard.  I stumbled across some photos of a woman photographed just after she finished chemo.  She was wearing a plain grey t-shirt and looked so casual and contemplative in the pictures.  They were lovely.  So instead of showing up for pictures in one of the lovely silk blouses I’d chosen originally (which of course, we did photograph eventually), I showed up in a plain grey tank top and my favorite yoga pants.  I’d have never thought of being photographed in something so plain, but it turns out, I really loved the way all these pictures turned out.  It was so hard to only show a few.

The other thing that surprised me about these photos—I’m not at all self-conscious of how I look, despite the fact that I was not even all the way through the first stage of reconstruction.  It’s a long process, but I have to say that my surgeon is not only very compassionate, but wants to make sure that I’m pleased with how I look every step of the way.  He made it very clear from our first meeting that he didn’t want me to feel like this was how I had to look because I had breast cancer, or even that I looked “good enough” for having had cancer.  He wanted me to be happy with how I looked.  Period.

In those pictures I saw on pinterest, the woman still had her port in.  Why didn’t I have any pictures of my port?  I can’t believe it!  I told Sally that I didn’t want her to photoshop out my port scar, even still, you really can hardly see it in most of the pictures.  Thankfully, it’s pretty prominent in one of my favorite shots.  I like that I don’t have on fancy clothes or statement jewelry.  These pictures are just me, scars and all.  And that’s not good enough.  It’s just good.

Photography by Sally Brewer Photography

Lipstick: Dior Addict Lip Glow

Bracelet: Choose Joy by lilblueboo

Kids | From the Pen of a Third Grader

I mentioned that I’m a little squeamish about using the term “survivor” and have a bit of a knee-jerk reaction to seeing the pink ribbon plastered all over.  Turns out my precious third grader has adopted the symbol as her own, and even she identifies with the term “breast cancer survivor.”  From the day I told her, I’ve found pink ribbons drawn all over the place, and I’ve had to work hard to convince her she doesn’t need a leotard emblazoned with pink crystals in the shape of a ribbon.  I think I only won that one because she can’t buy it on her own!  But seeing these notes she left me on my sewing machine (where she leaves most of my notes) is making me think about the term survivor again.  While I nearly wince to have to call myself a survivor, maybe it’s important for her that I do.  Maybe I’ll reconsider…

Missing Cancer | Naps

While I was on chemo, and for quite a while after, I took a nap just about every single day.  I’d skip a day here or there, but for the most part, I napped for two or three hours every afternoon.  Sometimes that put a bit of a damper on my fun, I once turned down a lunch invitation to District Taco just to be sure I had time for my nap!  I usually had company when I was at the hospital, but occasionally I’d sneak in a nap there, too.  My best hospital nap was probably just after this picture was taken, I was in this super teensy room while I waited to get appropriately radioactive for my PET scan.  The recliner I was in touched one wall when it was reclined, and my feet were touching the other wall.  I can see some people finding it claustrophobic, but it was huge compared to the tube they stuck me in moments later!

I’m missing my naps now, though.  There’s something so luxurious about using a nap as a perfectly acceptable excuse to do nothing.  Now I’m back to weekends-only naps, and last weekend was too busy, so it’s been a LONG time since I’ve had a nap.  Those were the good old days!

This post is part of a series of what I’ll miss from my time as a cancer patient.  I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers.  I don’t mean to offend by making light of a serious subject.  These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.

Love me, love my friends

All during my cancer treatments, I was so fortunate.  I didn’t have an unmet need.  Friends would literally fight over the opportunity to bring us meals.  Sally would post meal delivery dates, and usually within minutes, all the slots would be filled.  Friends watched my kids so that I could go to appointments or even just take a nap.  Cupcakes showed up at my door.  So did hats, jewelry, magazines, books…  We were so well taken care of at my house, I couldn’t have asked for more.

Sadly, I didn’t realize until a little late in the process that there was something more I should have asked for.  I should have asked for help for those who were doing so much to help me.  Clay is the obvious caregiver, but he was pretty well taken care of, too.  (I sometimes wonder if he misses all the yummy meals and treats people would bring us, now that it’s back to me doing all the cooking!)  But there were others who cared for me who weren’t as obvious.  Luckily, Sally’s husband was able to arrange his schedule so she only had to get a sitter a couple of times to come along to chemo.  But frequently she would spend the day with me, and as I returned to find dinner ready and waiting for me, she would drive the 45 minutes home and stop at the store to get what she needed to make dinner for her family.  My mom, many hours away, didn’t spend her whole day caring for me only to have to cook dinner.  Instead, she would spend my chemo days worrying—despite all my best efforts to convince her that it wasn’t so bad. Please don’t think I’m complaining.  (In fact, I think Sally would probably kill me if she thought I was soliciting meals for her!)  Lots of people thought of my friends and family!  A neighborhood friend watched Sally’s little one while I was in the hospital so she could stop by to visit.  Several friends showed up at the hospital to bring Clay lunch, snacks, and magazines to fill the day when I was in surgery.  A friend’s cousin (who I’ve only met a couple of times!) offered her home for my family to use when they visited us over Christmas.  A good friend of my mom met her for a special lunch while Sally and I celebrated at my last chemo treatment!

I’m definitely more in tune now to see the needs of a fellow cancer patient.  I know the things that people did for me that really touched me, perhaps I’ll share some of those some day.  But I think one thing that I really learned is that it’s the best friend, the mom, the sister who is the unsung hero.  She needs support, too.  The challenge I give myself is the same one I hope you’ll take on as your own.  Of course, if I have a friend going through something like this, I’ll make her dinner, take her kids, go with her to as many appointments as often as  she needs.  But I’ll also offer to watch her best friend’s kids.  And the next time I see a friend whose good friend is going through a tough time, I’ll do what I can to make it easy for her to be there for her friend.  Sally would never have asked, but a meal or a sitter would have made her life easier.  My mom didn’t need a sitter, but loved the distraction of a lunch date or shopping adventure on my chemo days.  It gives a whole new meaning to the phrase, “Love me, love my friends.”

Running from Fear

Saturday a woman was attacked near one of my favorite running spots.  Thankfully, she wasn’t seriously hurt.  But the attacker took something from her.  I can’t imagine how long she will struggle to go running by herself again.  It turns out, the attacker took something from me, too.  He stole my favorite run of the week.  There’s something that I really love about my Sunday morning runs.  I can get up as early as I want to go as far as I want before hopping in the shower to get ready for church.  I don’t have to worry about being in the way while Clay gets ready, and I don’t have to worry about getting the kids to the bus stop.  Everything is quiet on Sunday mornings.  My house, the streets, the trail.  I’ve seen deer, foxes, bunches of bunnies, and the occasional cyclist.  There is one older gentleman who runs every Sunday morning, too, and no matter how far I’ve run, we always pass at just about the same spot, when I’m about to get off the trail, to head through the neighborhood back to my house. He was there every Sunday morning when that was my weekly 6 mile run as I prepared for a race a year and a half ago, and as my mileage dropped after that race, I’d still pass him in the same area.  Last Sunday, I only managed to run two miles, but they were strong, and it was so reassuring to pass him again.  I imagine he’s been there every Sunday morning the past few months, when chemo and surgery managed to convince me to forgo my favorite run.  I wonder what he thought as we passed last week—did he ever even notice that we used to pass every week?  Did he notice that it had been a while?

Did he notice that I wasn’t there this Sunday morning?  That attacker took my favorite run from me this week.  Instead of heading to the familiar peace of the trail yesterday morning, I decided to stick to the neighborhood roads. Man, my neighborhood is hilly!  Even though it was daylight, I took my flashlight, which I affectionately call my face shredder, just to be extra safe.  (A friend in law enforcement suggested I get one—his best bet for personal security.) Really, I should be so thankful that I have such a nice place to run—lovely homes, well cared for sidewalks, friendly neighbors.  But still, my ability to make my own choice was taken from me, and that made me angry.  When I was running during chemo, I used to imagine what I’d say if someone approached me while running, made me feel threatened.  (I should say that I run in a very safe place, but still the mind wanders…)  I used to imagine how empowering it would be to rip off my hat and tell someone that I was on chemo—stronger than cancer, stronger than them.  And if that didn’t work, I’d threaten to spit on them—the chemo nurse made sure that we knew that our saliva was toxic for a day or two after treatment!  Yesterday as I ran, I was thinking how mad I was to have made it this far, past cancer, past chemo, past surgery, only to have my run thwarted because my safety was threatened.

Last night, I finally managed to figure out from some small news items that the place the woman was attacked wasn’t actually on my trail.  There is a whole series of trails around us, and the one she was on was more isolated and close to a road to allow an attacker to flee. I wasn’t going to stay away forever, but I guess that means I’ll head back out on the trails for my very next run.  I’ve never been one to let fear rule the choices I make, but perhaps I’ll start taking my face shredder, even when it’s not dark.  And while I’m sure it’s probably the wise decision, feeling it in my hand will only remind me of why I need it, and that just makes me a little bit sad.  But if I’ve learned anything in the last year, it’s that I’m stronger than fear, and so I’ll keep on running.

Little Rewards

I’m a big fan of rewarding myself—I’ll frequently set little goals with little rewards for completion.  When I was trying to get into the habit of running, I didn’t really have any running gear, so my first real running clothes weren’t purchased until I’d run three times a week for six weeks straight.  Things like weekly mileage or a longer “long run” earned me more. A couple of weeks before my surgery, Sally and I stopped in Zoe Boutique after our run.  Our friend, Susan, owns the shop, and we’ve become friends with the manager, Tara, too, so we love stopping in anytime we’re in the neighborhood.  They were getting ready for the annual Old Town Warehouse Sale, and looking through the racks they were preparing to take along, I saw it.  My mastectomy reward.

One of the lesser know “perks” of reconstruction is the ability to wear backless or sheer-backed tops without worrying about pesky straps.  I would never have considered this lovely blue Alice and Trixie top before, but I decided to try it on.  I loved it, and I bought it.  Because I could.  I was excited to wear it last week when Sally took some photos of me, and since we were using Zoe Boutique as our “home base” while we took pictures around Old Town, we decided to do a few outside our favorite old town shop!

Photography by Sally Brewer Photography

Lipstick: Funny Face by Nars

Kids | From the pen of a kindergartener

I love getting all the pictures and journals from the kids at the end of the year.  This is some of Turner’s writing from the fall.  It breaks my heart that he was sad.  I am so thankful for a teacher who saw his sadness and asked him to draw what made him feel better.  And in true Turner fashion, my cancer takes on the form of an epic battle: “The medicine is fighting the cancer.”  I’m so glad that the medicine won this epic battle.

Missing Cancer | Cupcakes

I arrived home from my first trip to chemo back in November to a super yummy surprise—cupcakes from a local favorite, Bakeshop.  During my cancer treatment, my friends overwhelmed me with “little happies” as my friend, Lucy, would say.  Lots of cupcakes, cookies, favorite candy, my new favorite salted caramel gelato…  Sometimes they’d come as a dessert with dinner, but lots of times, they just showed up on my front porch!  I know we all have images of that woman going through chemo treatment who is waif-like thin from being so sick.  It turns out now, most breast cancer patients actually gain weight.  The anti-nausea meds make it easier to eat, and the steroids even increase appetite.  I have to say, with all the cupcakes and other yummy treats that appeared at my house, it’s lucky that I weighed the same when I finished chemo as when I started!  But they were so yummy, I would have been ok to have a few extra pounds to lose before summer!  Many thanks to all the friends who brightened my day with a sweet “happy!”

This post is part of a series of what I’ll miss from my time as a cancer patient.  I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers.  I don’t mean to offend by making light of a serious subject.  These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.

Three Negatives Don’t Make a Positive

There are days that will live in infamy, everyone knows what happened that day, where they were.  December 7, 1941.  November 22, 1963.  September 11, 2001.  And for me, Friday, October 5, 2013.  A few days before I’d seen a breast surgeon, she was so sure that the cyst she’d aspirated was not anything to worry about that I really wasn’t even thinking about her call.  In retrospect, I think I was very lucky those few days—I felt none of the anxiety that so many women feel waiting for pathology results.  To be sure, I wanted the fluid sent to pathology, but I wasn’t any more concerned than my surgeon.  Early the morning of the fifth, I got up and headed to the hospital for an umbilical hernia repair to make pretty again the belly button ravaged by pregnancy, having totally forgotten about the pending pathology report.  The procedure was quick and easy, and I was home sleeping off the meds by noon.  I woke to a voicemail from my breast surgeon, telling me that her office would be scheduling me some follow up procedures on Tuesday (Monday was a holiday)—a comprehensive mammogram and an MRI, and that she’d call me back when she was out of her afternoon meeting.  Admittedly, those next few hours were pretty anxiety filled.  I was super sleepy from my meds and sore on top of that, but didn’t want to go to sleep and not be able to talk to my surgeon when she called back.  When I finally talked to her, she told me that the pathology revealed an “abnormality,” and I think she wanted to leave it at that until I would see her the following Wednesday.  We had chatted in her office briefly, but she didn’t know my background.  Not quite on the level of Reece Witherspoon and the “do you KNOW who I am?” scene, I gave her a thirty second review of my background and asked her to please explain to me the nature the this “abnormality.”  (I think I’ll forever dislike that word.)  It was like she was the teacher from Charlie Brown.  “Wah-wah-wah-wah…” I had to ask her to repeat herself.  Invasive ductal carcinoma.  I caught my breath and then asked for the ER/PR/HER2 status.  ER: negative, PR: negative, HER2: negative.  Triple negative.  Another deep breath.

Now it’s time for me to don my scientist cap for a moment.  (Feel free to skip this paragraph if thinking about science makes your head hurt!) Most normal adult tissue doesn’t grow much, and when it does, the cells have specific ways of knowing when they should grow and when they should stop growing.  Cancer  cells have figured out ways to exploit or circumvent these normal controls.  Receptors on a cell’s surface are one way a cell is alerted to grow, and having far too many of these receptors can allow it to grow uncontrollably.  In breast cancer, the estrogen receptor (ER) can be over expressed leading to expression of the progesterone receptor (PR) and ultimately, uncontrolled cell growth.  A cell with too much ER tells the pathologist that the cell is using estrogen to grow. Even if the pathologist doesn’t see too much ER,  the small amount present could be very active and make a lot of PR, so again, this indicates that the cell is using estrogen signaling to grow.  Tumors that are ER and/or PR positive are considered hormone dependent.  As a class, these tumors tend to be less aggressive and can frequently be treated with good results using Tamoxifen, which blocks estrogen signaling in the breast.  HER2 is another growth factor receptor, and tumors overexpressing HER2 respond well to treatment with Herceptin which specifically targets that receptor. 

And then there’s me.  Triple negative.  There is no specifically targeted therapy for triple negative cancer.  Astute followers of this blog may notice that I haven’t discussed my receptor status here before, even though it was the first question I had for the surgeon.  Put simply: triple negative is bad.  From the instant she said those words, I knew.  Chemo, probably AC followed by T.  Then a double mastectomy.  Then probably radiation.  I allowed my brain to think no further into the future than that.  Triple negative cancer is, as a class, much more serious—treatment is more aggressive and long term survival isn’t as good.  Thankfully, a PET scan a week later showed that I didn’t likely have any nodal involvement—all the cancer was contained in the breast—and that’s very good news.  My doctor was so encouraging.  I can remember her telling me that triple negative was really bad, but when caught early (like mine) it is very treatable.  She told me it would be a rough year, and then it would be over.  And so for those who care about me, those who are inclined to look things up online (yes, that includes you, mom!), I kept those words to myself.  I’ll write later about my thoughts on looking for medical information online, but in general, it’s best not to.  I didn’t want people reading all kinds of horror stories and thinking they would become my story.

In the past few weeks, in preparation for meeting with the Georgetown advocacy group, I’ve started looking into the current trends in breast cancer research, and I’ve found that triple negative breast cancer (TNBC) is a big area of research.  I’ve learned all kinds of things that I still think I might rather not know, at least not now.  It’s not that I believe that ignorance is bliss, but there is such a thing as having too much information.  I’m not sure I was ready to read everything I did.  But if you’re tempted (and I repeat, please don’t be!), I did find one report that spoke to my case specifically and was very encouraging.  It looked at cases of women who received chemo before surgery like me (called neoadjuvant chemotherapy).  Those who had no cancer cells remaining at the time of surgery, who had a complete pathological response, like me, had much improved long term survival.  I’m in good company in the shadow of what could have been a very bad situation.

And so October 5 will be a day, though probably not marked on my calendar, that will be forever marked on my mind.  Maybe I’ll mark it on my calendar after all.  I’m looking forward to being able to celebrate on that day for many, many years to come.

Flashback Friday

This is how I looked, and more notably, how Emma Clare looked, the last time I went into The Research Building at Georgetown University.  September 2004.  This photo was taken before we left the house the morning of my dissertation defense.  (And before I had a professional photographer following me around all the time!) After this day, I went back at most two or three times that month to go over some minor revisions before I deposited the final copy of my dissertation.  Almost nine years later, last Friday, I walked down the old familiar path past the Lombardi Cancer Center, past the icky Koi pond, and through the doors of The Research Building once again.  So much has changed since that day, and yet, as I peeked into the room where I spent countless hours in the hood doing cell culture, so much has remained unchanged.

Friday, I wound my way through those familiar halls for my first meeting with the Georgetown Lombardi Breast Cancer Patient Advocacy Committee.  I wish I could come up with an easier nickname than GLBCPAC—it doesn’t really just flow off the tongue—but there you have it.  Led by a researcher who started her postdoctoral fellowship the same year I left Georgetown, it’s a group of women who proudly call themselves breast cancer survivors (I’m still working on that one!) and volunteer their time to learn more about scientific research in the field of breast cancer.  From what I can gather, though none are scientists, many have gone through scientific and policy training to make them effective advocates for breast cancer research.  Some of them now work professionally in an advocacy position, some are retired and their volunteer work is now their only job, and some have maintained their original profession and are advocates in their “spare time.”  They have served on grant review panels, attended major cancer association annual meetings, and visited congressmen to lobby on behalf of breast cancer researchers and funding.  It was a pleasure getting to know them, and they were all so kind as they welcomed me.  As we talked about what I hoped to learn from the group, several suggested friends and colleagues they felt I would benefit from meeting.  Bright and early Tuesday morning, I’m going to get started following up on some emails and making a phone call or two to start building that network.  This group focuses more on research advocacy, though many are also involved in patient support as well, and they are a great resource in so many areas of breast cancer patient advocacy.  I’m so excited that I’ll have the opportunity to meet with them monthly over the summer while I’m trying to figure out if and how I’d like to look for a professional position in this field, and I foresee my relationship with these ladies will continue long into the future.

After the meeting was over, I walked down the hall a few doors and stopped into my old lab.  I said “hi” to a few familiar faces and sat down and talked for a while with the friend whose bench faced mine all those years ago.  The baby she had just before Emma Clare was born is now just a few inches shorter than she!  We talked about old friends, kids, travel, cancer.  Then I headed over to my mentor’s office and had a lovely chat with her.  I was a little apprehensive—some relationships are hard to pick up after so long.  But we had such a nice conversation, we spent a little time talking science, the role of patient advocates in the grant review process, and how that process has changed in the past ten years or so.  It was an energizing morning.  Having never really loved the bench work, when I left the lab nine years ago with that tiny baby on my hip, I never really anticipated I’d be back.  And yet, there I was.  What a wild ride.

Getting My Model On

I had the best time this week out and about Old Town with the always lovely Sally of Sally Brewer Photography.  I wanted some nice updated photos of myself—I don’t really feel like the old ones with all that hair really look like me anymore!  And so we traipsed around Old Town, me doing my very best to not blink while she captured the new, short-haired me!  Because that’s how we roll, I changed clothes (and lipstick!) several times, and she photographed me in several different spots.  I’ll probably break it up into a few posts because it’s too hard to pick even three or four favorites!

I’m sure not every woman who has gone through breast cancer can find such a fabulous photographer to document her journey and how she’s come through it.  I know so many women fear breast cancer will steal their beauty, make them feel less feminine. But I feel like someone who didn’t know the long-haired, pre-surgery Jamie wouldn’t begin to imagine what my body has gone through in the past year.  Looking at these pictures, I see a healthy, happy, confident woman.  I couldn’t have hoped for more.  These photos are such a treasure.  Many thanks to my dear friend, Sally.

photography by Sally Brewer Photography

lipstick: Dubonnet by MAC

Missing Cancer | The Bald Head

Glamorous, I know.  The week before surgery I ended up with pink eye, so on top of the bald head, I had to wear my glasses.  A post-run shopping outing with a toddler on my back?  I couldn’t have felt less fabulous.  But how could you not smile at this scene?  And I love all those smiles!  Babies and really little kiddos were a little afraid of me at first, and elementary kids tended to stare for a while, and I can’t blame them for that.  But as soon as I’d smile and act normal, they got over it.  Thankfully, I never felt like I got too many pity-filled glances from adults.  But what I loved—the young adults who told me I could really rock a bald head, and the old ladies—they were the best.  I’m betting many of them saw themselves or their friends in the first glimpse of my bald head and smiled to encourage me.  Little old ladies love a bald girl, but it turns out they’re a little less enthusiastic when they’re trying to figure out if I’m growing out my post-chemo hair or if I'm sporting a lesbian-chic look!  I don’t get nearly as much old lady love now that I’ve got enough hair to put product in!  (And speaking of hair, Sally and I went on a photo session/adventure yesterday, I’ll be sure to post some pics of my sleek new ‘do when she passes them along!)

This is the first in a series of what I’ll miss from my time as a cancer patient.  I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers.  I don’t mean to offend by making light of a serious subject.  These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.

School Days

That first talk with the kids was hard.  Seeing the looks on their faces when I told them I had cancer just broke my heart.  They understood so much more than I wanted them to.  That evening, we revisited the conversation several times, and I felt like they were handling it relatively well.  But before I talked to them, I stopped in at the school to talk to their teachers.  They needed to be ready to handle the kids’ reactions the next day.  It was hard to realize that their teachers spend more waking hours with the kids than I do some days.  I didn’t want them to get a free pass for poor behavior or skipping their homework, but I wanted the teachers to know what was going on, and to let me know if it seemed like they were struggling more than I knew.

After a few weeks, the kids had adjusted pretty well and our lives were seeming a little more normal again.  I got a call from Turner’s kindergarten teacher, she said that the assistant had overheard him talking to his friends at lunch about death.  I didn’t have the heart to tell her that he was probably talking about some epic battle involving either star wars, ninjas, or zombies.  Not likely he was talking about me.  But she suggested he talk with the school counselor, and so I told her to feel free to arrange the meeting. He was so excited that he’d gotten to eat his lunch in the counselor’s office!  He gave me the run down of everything they talked about—apparently I only made up the first few minutes.  It turns out he was delighted to have an adult’s individual attention for a whole 25 minutes!  He excitedly told me that she said he could come back any time, and he was thinking about heading there a few more times that week! 

Apparently, after talking to Turner, the counselor thought she should check in with Emma Clare, too.  We have a great bus stop, and the kids there are much like family—siblings who play well together most of the time, but sometimes fight and then make up quickly.  It seems that this particular day, Emma Clare and another little girl at the bus stop were on the outs, and when the counselor came into the classroom and asked to see her, Emma Clare was afraid her friend had gotten her in trouble.  Her account of what happened next: “Then I thought she was going to propose to me, mommy.  She got down on one knee and everything and took my hand!”

The kids’ teachers were so supportive during the course of my treatment and I really appreciated knowing they were well taken care of.  Even when my sweet kiddos didn’t know that they needed someone looking out for them.

On Being a Survivor

Having made it through chemo and surgery and having been told by the doctors that there is no residual disease, I have entered the third stage of my interaction with breast cancer.  Researcher.  Patient.  Now survivor.  That’s a hard word for me.  There are some benefits to using it—everyone knows what it means: I had breast cancer and I didn’t die. It means that at big breast cancer races I get the pink shirt and the cool swag bag.  It gains me access into a whole new community.  A community, it turns out, filled with vibrant, beautiful, compassionate women of all ages.

But I worry about using the term survivor.  In fact, I’ll probably use it when absolutely necessary (I love me some swag bags!) but I’m not sure I’ll refer to myself as a breast cancer survivor much.  I survived, but not because I’m stronger or made wiser decisions or am more favored by God.  I worry that to call myself a survivor somehow implies that those women who have gone before me, the ones who have succumbed to breast cancer, were weaker.  In fact, those ladies likely possessed more strength than I could ever imagine.

To survive something means that you’ve gotten through something hard, and I suppose that fits.  Many survivors—survivors of war, natural disasters, acts of terror, feel guilt about having survived.  Even long before the doctors pronounced me cancer free, I felt this guilt.  Throughout all of my chemo treatments, I was not nauseated.  Not a single time.  I had no sores in my mouth, my fingernails were in good shape, my fatigue never reached the level of debilitating (though I’m sure the napping helped).  Frankly, for the most part, I felt great.  And at the same time, I felt horribly.  Horribly for the women who were nauseated, completely worn down, couldn’t eat.  I wanted to have a great attitude all the time, but sometimes I felt bad just for being able to have such a great attitude.  Never was that guilt more acute than when I sat, wig-clad, at my good friend’s funeral.  It’s not fair that she has to be labeled “breast cancer victim” while I get to wear the badge “survivor.”  She was a strong, healthy, Godly woman.  I’m not better than her.  I just have a different story.

You won’t see a big pink ribbon magnet on the back of my car or anywhere on this site. (Though my daughter does love them, bless her heart.) At least not now. It has nothing to do with wanting to hide the fact that I’ve had breast cancer.  You won’t hurt my feelings by calling me a survivor, but that’s just not how I want to think of myself.  I prefer you think of me as a wife, a mother, a daughter, a friend.  Think of me as a researcher, an advocate.  We’ve all survived something tough.  We’re all survivors.

Bed Head

If you look really closely on the right side of my head (left of the photo), you can a fuzzy little patch of bed head!  Not normally something to be excited about, let alone post on the internet for all to see, but this is proof that I have enough hair to actually get messed up!  Thankfully, fixing it is as easy as hopping out of the shower (or getting my hands wet in the sink!) and smoothing it down with a little product.  My new friend Meg, who started out as Sally’s friend Meg, trimmed up my hair for me a few weeks ago and I had to ask her about product for my new super short hair.  Short hair products are very different than long hair products!  At her suggestion, I got some Aquage Transforming Paste, and it does an awesome job at transforming this fuzzy mess into something that looks a bit more deliberate.  (And yes, that is my painfully old iPhone.  I keep thinking it will stop working and I’ll need a new one, and would you believe it?  That thing just won’t die!)

Sharing a Story with Angelina Jolie

Somehow I never thought I’d be writing a post about Angelina Jolie.  And while I loved how tough her character was in Salt, I've never imagined lauding her in a public forum for her toughness.  Last night I tried several times to start a post about my surgery—trying to figure out how to share the process.  It’s a strange thing to share with a big audience.  I’d type, I’d delete.  I’d type again, let myself get distracted, then I finally gave up and headed to bed.

I woke up this morning to emails from two friends who’d already seen the news—the first complimenting me on being ahead of the trend yet again.  The second, from a friend who walked this road before me, commenting that we have been preempted as the cool faces of breast cancer. Reading Angelina Jolie’s op-ed piece in the Times about her decision to have a double mastectomy and reconstruction left me in unfamiliar territory-- I’m truly impressed by this celebrity.  Granted, I’m sure someone helped her find the eloquent words to share her story.  But still,it’s her story, and it’s not an easy story to share.

My story is not the same as hers.  I did undergo the same genetic testing, not because of a strong family history, but because I was diagnosed with aggressive cancer as a young woman, and I was so thankful for the negative result.  And the story of my surgery is not identical to hers, either.  My trip to the surgeon was not by my own choice, it was a medical necessity.  But while surgery was necessary, the decision to have a bilateral mastectomy was mine.  It is not a decision to be taken lightly, but one that I never questioned.  Last night I was searching for the words to explain what I went through without being graphic and without sugar coating it, either.  It seemed important to share that first and foremost, reconstruction following a mastectomy is a process.  The process is started during the original mastectomy surgery, but it’s not complete for months, after weekly or biweekly appointments with a plastic surgeon and between one and three more surgical procedures.  In her piece, Angelina Jolie (what do I call her? Angelina seems too familiar, Ms. Jolie sounds ridiculous.  AJ, maybe?) also debunked one big fear from years past.  This surgery does not leave one deformed, it doesn’t steal a woman’s beauty or femininity.  A talented surgeon can achieve great results but it takes time and patience.

I talked before about the fact that I did the genetic testing early on after my diagnosis.  AJ mentioned the great cost of this testing and the fact that cost makes it inaccessible to many.  While I don’t think that it’s fair for companies to make obscene profits at the cost of someone who is sick, I can appreciate the work that sequencing those genes requires, not to mention the cost that went into the discovery of the gene and the development of a test that can be run on nothing more than some mouthwash that’s been swished around a patient’s mouth for a minute or two.  But what AJ failed to mention is that not everyone needs this test.  In fact, not everyone whose mother or aunt or sister has died of breast or ovarian cancer needs this test.  Many large cancer centers have genetic counselors on staff who spend hours discussing cancer risk and the implications of a positive test with patients before testing will occur.  Some early fears of the implications of a positive BRCA test have dissipated (inability to get a job or insurance chief among them), but the decision to even be tested is not one to be taken lightly. And in the case of those who are truly at a high risk of being BRCA positive, many insurance companies will now cover the test. 

Last night, as I struggled to write this post, I would have never imagined that Angelina Jolie would help me write it today.  But I think given a difficult circumstance, she made a good decision for the right reasons, and I applaud her boldness to share it.  Even as one who will never face the same circumstance, I appreciate that she had the toughness to share her story, and that she helped me share mine.

Perfect Timing

This has the potential to be a very long post.  We’ll see how this goes…

Of course, no one ever wants to get cancer.  I’m sure most people would say there’s no good time to get cancer.  But I have to say, I disagree on that one.  If I had to get cancer, I don’t think it could have come at a better time.  I’m so thankful that my diagnosis came after Turner was in kindergarten, having to get him to and from preschool would have made my schedule much trickier.  I was diagnosed at the beginning of the school year, which was also good.  The only part of my treatment that I won’t finish before they’re out of school is the final surgery of my reconstruction, and that can wait until September if I choose.  I’m so fortunate that I hadn’t gotten a job, full time or otherwise.  Staying at home gave me the opportunity to head to the doctor appointments and nap while the kids were at school so that I could try to keep things with them as normal as possible.

I think that staying active during my treatments really helped me.  I have to imagine that it probably improved how I dealt with the treatments, even if it didn’t make a difference in how those treatments affected the cancer.  Two years ago, I wouldn’t have been able to stay active during the treatments though, as the most active thing I did was chase around toddlers.  I’m not saying that’s not work, but it’s just been in the past couple of years that I’ve started running and working out in earnest. God knew what my body would have to go through, and  made it strong enough to withstand months of poison and the physical effects of surgery.

But there are other timing issues that I would have never imagined were at work, even years in advance. When I applied to graduate schools, I was not looking for a cancer program, I merely wanted a program that focused on translational science—science that would quickly (relatively speaking) impact patients’ lives and their clinical outcome.  Initially, Georgetown was not even my first choice, but the program’s affiliation with the Lombardi Cancer Center meant that most of their research was translational, and it was a very attractive program—no teaching requirements!  Many of the labs focused on breast cancer, and I was drawn to that research.  I began attending the Clinical Breast Conference where oncologists, surgeons, radiation oncologists and even researchers discussed especially unique breast cancer cases and which treatment courses would give these patients the best outcome.  I quickly realized that I enjoyed the interaction with the clinicians and patients’ cases (though of course I had no interaction with actual patients) far more than I enjoyed the daily intricacies of lab work.  Towards the end of my doctorate, I even got in touch with several breast cancer advocacy groups, hoping that I could use my scientific expertise to be an asset to their groups.  I was never able to secure a position with such a group, and when Emma Clare was born, I was happy to be able to stay home with her.

Probably the craziest timing ever?  The week after surgery I got a message asking me to get in touch with my graduate mentor, who I hadn’t heard from since just after my defense.  That was just after a delightful discussion with my oncologist who had encouraged me to find a way to work with a breast cancer advocacy group, telling me that my unique combination of education and experiences would make me an asset to any organization. I was able to tell my mentor that I had a clean bill of health, no cancer remaining at all, and once I had recovered I hoped to look for a job with an advocacy organization.  To my delight, she quickly responded that a researcher at Lombardi has started a volunteer patient advocacy group, and she thought I would be a perfect fit in that group.  After talking with the researcher who runs the group, I’m looking forward to my first meeting with the Georgetown Lombardi Breast Cancer Patient Advocacy Council at the end of the month! 

I don’t think that God gave me cancer.  But I believe that he knew it would become part of my story, and I am amazed at how He arranged my circumstances so that I would be uniquely prepared to make a difference in the lives of breast cancer patients, doing something that I really enjoy.

Back in the Game

Six weeks past surgery and I got the official go ahead—and I didn’t waste any time heading out for my first run.  Sally and I met up in Old Town and ran along the river.  I don’t know that either of us realized how much we’d missed that time until we started running.  Meeting at least weekly during chemo to run was so much fun, we caught up on a lot of things and solved lots of the world’s problems.  We weren’t fast—but ran the first mile pretty hard before taking a break to walk.  After we finished our four miles and stopped at Starbucks, I could already feel my legs getting sore.  But it’s a great sore.  In the immortal words of Sally, I’m back in the game y’all.  “Cancer can suck it.”

Take me out to the ballgame

The Cardinals were playing the Nationals tonight, so we all headed out to Nationals Park to cheer them on.  Clay wore his Nats cap, but I’ve managed to make Cards fans out of the kids!  It was a fun game and the Cards won!  (Plus, check out the hair growth—it’s still super soft and fuzzy, but you can at least see a hairline now!)

Thank Goodness

It’s only been about a month since they all fell out, but my eyebrows and lashes are pretty much grown back.  Since they all fell out at the same time, they all grew back in at the same time, so I've even waxed my brows to clean them up a bit!  Such a relief—putting on those eyelashes really took some time and getting used to.  I liked the way they looked, but just slathering on a coat or two of mascara is so much faster!  And while I’ve really gotten to like using the Anastasia brow kit with the wax and two toned powders, the brow gel really is a lot faster.  I think I’ll probably go the wax/powder route when I’m really “doing” my makeup, but the gel is nice when I just want to throw on something quickly to get out the door.  Even better, I think that my brows have come in a little darker, so I don’t have to strain to see them before I get around to dressing them up. Gotta take the perks when I can. Speaking of which, my hair is still coming in, it’s so soft—Emma Clare loves to rub my head.  But it’s still so light, not quite white blonde, but so  much lighter than it used to be.  Now that I have super short hair and don’t have to spend ages on my brows and lashes, I’m finally getting back to a pretty low maintenance morning routine.  I could get used to this!