School Days

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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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pink ribbon

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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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

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Photography by Annie Liebovitz for Vogue

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

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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

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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

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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

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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!

The Show and Tell Box

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My friend, Marcia, and I have decided that the plastic surgeon needs a show and tell box in his office.  It turns out that when I didn’t know what to expect, my mind came up with something so much worse.  The drains were not nearly as bad as I’d thought.  They were really easy to empty and I only had to do it twice a day.  I could shower starting the day after I came home, and it wasn’t a problem cleaning around the sites.  It was harder to dress around them, they were pretty bulky hanging around my abdomen.  It was hard getting a straight answer about how long I’d have them.  I had three, and got one taken out each week after surgery.  Which means it was three long weeks with at least one drain.  But I survived and went out a lot, without looking like a total freak.  I think.  The incisions didn’t look so bad, either.  I didn’t have any bruising, and there was only a little discoloration where the dermabond (much like superglue) closed the incisions; there were no stitches.  And as soon as the dermabond started flaking off, there was nothing left but nice, pink scars.  The compression bra was probably as bad as I’d thought.  Big, ugly, and lace trimmed.  Velcro all down the central front closure and on the front where the straps which come up over the shoulders attach, which leads to some pretty ugly flaps that are bulky under clothes.  Wearing a scarf around my neck worked to conceal the ugly parts of the bra that no shirt could cover in the early days.  Later, I took to wearing a sports bra over the compression bra to keep the strap tabs in place so that I could at least wear a somewhat normal shirt.  I did get a compression bra at Nordstrom, the one suggested by my doctor.  But it turns out it wasn’t really as great a bra as I’d hoped, it didn’t provide enough compression in some places, and so it didn’t get a lot of wear.  Thankfully, though, I’m almost to the magic six week mark when I can ditch the compression gear all together.  Since that’s also when I can head out for a run and start building up arm strength, that magic mark can’t come soon enough!

Adding Insult to Injury

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brow set

I mentioned it before, but within 24 hours of arriving home from the hospital, all my eyelashes and eyebrows had fallen out. Seriously? Somehow it never bothered me to go in public without a wig or even a hat, but it killed me to even go around my house sans lashes and brows. Thankfully, I already had a set of false lashes I’d bought in the fall (pre-cancer) to play with. They’re not easy to put on, but I got quicker with practice. Eyeliner became super important—lining first with a good dark liner (I used a liquid water proof liner by L’Oreal that I found at Target. Like this but waterproof) gave me a little room for error so that I didn’t have to be quite so perfect in my application. And that same eyeliner did a good job defining my eyes so that I could skip lashes on days when I just didn’t care enough to put in the time. The Anastasia brow gel that I loved to darken my super blonde brows didn’t quite do the trick once the blonde hairs were gone. So I headed back to Nordstrom and asked for their help. They pointed me to a different Anastasia product (brow express) that does a fabulous job of faking brows. It takes a while to do my brows since they don’t exist—using a stencil and several other products. But to me, it’s so worth it. And I can already see some little lashes and brows starting to grow back in, so hopefully the long process won’t be necessary soon.