Three Negatives Don’t Make a Positive

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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, 2012.  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

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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

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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!
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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.
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lipstick: Dubonnet by MAC

Missing Cancer | The Bald Head

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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

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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

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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!)