Category: TNBC

Almost Ideas

~ Jamie ~ Leave a comment

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I feel like I’m on the cusp of an idea right now. Like I almost have a handle on about a hundred different ideas floating around in my head. And yet, I’m having a hard time catching one and nailing it down. Back in graduate school, I wanted to work with a breast cancer advocacy group or even a news/media group to help bridge the gap between science and people who aren’t trained scientists. Trained scientists just love us some big words, and while they become second nature to us, we forget most people have no idea what we’re talking about. (Case in point, I thought it was adorable when we were dating that Clay talked about aliquotting out food to put in the freezer. Who talks like that? Scientists.)

Academia is pretty inbred– academics beget more academics. They rarely know anything else, so they’re not much help in the way of career development if you want to bust out of that ivory tower.  I tried on my own to get in touch with some advocacy groups, to volunteer, even, and couldn’t find any interest among them for a scientist in some sort of advisory and education capacity. Discouraged, and also super pregnant, I decided to leave the lab and stay at home with my new baby. But last fall when I prepared to send Turner to kindergarten, I was already thinking about what I might be when I “grew up.” Still feeling that discouragement from all those years ago, I resigned myself to the possibility of an adjunct position teaching basic science. Boring? Yes. But at least it would be something. And then, breast cancer forced itself back into my life.

Strangely, it wasn’t long into the treatment process that I realized that if I made it through all this, I might just be getting exactly what I had wanted all those years ago. Having a PhD in breast cancer research is great, but having the experience, too? You can’t get that in a book or a lab. You have to really earn that.

And so now I have lots of “almost ideas” floating around in my head– ways I can use my education and the experience, both hard earned, to do something I’ve always wanted to do.  I want to be able to help other women facing a breast cancer diagnosis to understand their options, to understand what the next year of their life will be like, and to understand that there will likely be many more after that. Breast cancer is not an automatic death sentence, but it isn’t all pretty and pink, either.  Understanding what is happening takes a lot of the scariness out of it, and having confidence that you have made the best decisions possible about your care makes such a difference.

I’ve got a couple of little projects that I’m working on and will share here when appropriate, but I’m still working on figuring out just what I want to be when I grow up. Somehow talking (or writing!) out loud helps me crystallize my thoughts, so this may be a recurring theme until I can grab a hold of a few ideas and really work them out. A good run with a good friend helped me a clear up a couple of things this morning, so feel free to share any thoughts you have!

If I had it to do over…

~ Jamie ~ Leave a comment

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Somehow the new year and all the talk of resolutions got me to thinking about second chances, do-overs. With the advantage of hindsight, I started to think about what I wish I had done differently. Thankfully, I can’t honestly think of any “big” things I’d change. Really, only two came to mind.

First, I’d let people know that I needed them more. No, I don’t wish that I’d accepted more help, but I do hope that everyone who went to coffee with me, brought my family dinner, or took care of my kids knows that it really was a big deal to me.  I needed their help, and I was (and remain) so very grateful.

Second, I’d take more pictures.  I’m sure there are a lot of you shaking your head– more pictures?  But yes.  I realized that I don’t have any pictures with my port– it was never my goal to hide it, but it didn’t seem to show up in any pictures. And yes, it was freaky-ugly, but Turner really loved gently petting it– he is so compassionate and I think he was reacting to the pain that I felt there when it first went in.  But the pictures I really wish I had? All those coffee dates, lunches, and chemo visitors. There must be at least ten of fifteen different friends who spent mornings with me, and I would love to have taken a quick snap of myself with each of those ladies. Sure, I didn’t always look glorious. I was bald, that’s not how most women want to be remembered. But I like to think that if I had those pictures, I wouldn’t see the bald head. I would see the smiling face of a woman who is loved.

There is Only One of Me…

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Last year, I had a great Christmas. My parents and my brother and his family all came here to celebrate in Virginia. Thanks to a friend’s cousin, they had a lovely place to stay just a mile or two away. We laughed, exchanged gifts, went to church, and ate and ate and ate. Two days after Christmas I headed in to start the second half of my chemo treatments. And it never once occurred to me to worry that it would be my last Christmas.

This Christmas, we resumed our normal travel schedule. Surprisingly, this is the year I was more contemplative, more mindful of every little detail.  I guess after all the recipe writing at Thanksgiving, it shouldn’t surprise me. And since last Christmas, I’ve lost a sweet friend to breast cancer and watched another restart her time in the chemo chair after a recurrence. I was trying to reassure myself– thinking of the differences between my disease and theirs. To be fair, I was diagnosed at an earlier stage and had a complete pathologic response at surgery, which is a big deal. My oncologist told me as much several times over at my last appointment. My outlook is good, just because other people don’t do well doesn’t mean I won’t.

Yet no matter how intellectual I try to be, sometimes the emotional side– even though I know it’s completely irrational– creeps in. And as intellect was warring with emotion inside my mind on Christmas Eve, I remembered this tee  (no longer available, but the artwork is available here) from LilBlueBoo. Of course, I’m sure that it was meant to tell little girls that they don’t need to conform to society’s views of beauty and popularity. But in that moment, I was reminded that my story can be very different from everyone else’s. There is only one of me in all time.

Triumph of Ambivalence | My Arlington Magazine Feature

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photo 2I love having a local magazine– one that features the best shops, restaurants, and stories about neighbors. It’s not uncommon for me to see a familiar face in the pages of Arlington Magazine. What is uncommon? To see my own face on those pages. And yet, there it is, complete with my name at the byline and Sally’s with her first in-print photo credit. Subscribers already have their copies, and Autumn assures me that covet and other local shops will have copies on the newsstands sometime this week.

Regular blog readers will recognize parts of this essay, where I was privileged to share a little about my journey through breast cancer and why I’m uncomfortable with the term survivor. The editor suggested the title: “Triumph of Ambivalence,” and I have to admit that I did a little googling before I agreed. But simply defined, ambivalence refers to mixed feelings– having both positive and negative feelings about something at the same time. And yes, I suppose that describes how I feel about being called a survivor.

Emma Clare looked at it and read the deck (look- I even learned some technical publishing talk!) and asked why the term “survivor” just didn’t feel right. I explained to her that I didn’t survive breast cancer because I’m better, stronger, or more godly. I wouldn’t people to think that. “Well, you’re not.”

But she quickly recovered. “You’re more of a domestic goddess.” Guess I’ll take that.

Domestic goddess, signing out.

It’s just a recipe, right?

~ Jamie ~ Leave a comment

Are you a recipe kind of person? I have friends like that, they love their cook books, and if you mention you really like something they made, they have a pretty recipe card ready for you the next time you meet. Or at the very least, they point you to their pinterest page to find the recipe.  And then there are people like me.  I consider a recipe to be more of a starting point– most recipes that I do use have notes all over them– omit this, add this, add twenty minutes baking time to use the size pan I have instead of the one called for. I dread friends asking me for my recipe for the things I make everyday, I rarely look at one at all.

Thanksgiving is no different.  This year, Emma Clare wanted to be in charge of the cranberry relish. She wanted to do it all herself. It’s a good dish for her to take the lead. One orange, one cup of sugar, one bag of cranberries. As long as you put them in the food processor in the right order, there’s really no way to mess it up. Apparently she’s destined to be a recipe gal, though, and she wanted me to write it all out, step by step. As I was writing it out, I realized that I didn’t have a recipe for anything I was making for our Thanksgiving meal, save the pie. (Which, yes, is marked up so it’s just like I like it!) The dressing, the potatoes, the Brussels sprouts…

And so I set about writing out some recipes. I didn’t do all the things I make, but I got a good start.  I’ll have to remember a few more every day staples like chili, potato soup, and Shepherd’s Pie. Last year, I was so in the moment. I just wanted to make my Thanksgiving meal and enjoy it, and I did. This year, no longer on chemo, I was technically healthier, yet in many ways, life after cancer really is harder. So, with the occasional tear in my eye, I wrote out the steps to make dressing to go with our turkey. Kind of a morbid exercise, really.  I’m hoping that I’m the one in charge of that meal for decades to come. Yet, somehow, it made me feel better to know that my family has the recipes to enjoy that special meal even if I can’t be the one cooking it. And I suppose, now it will be a little easier to share my favorite dishes with recipe-loving friends.

It’s fun to look through our recipe box and see who has contributed their recipes to our regular dinner and dessert rotations. I have no idea who she is, but Mary Bahn really is a rockstar in our house for her chocolate sheet cake. I doubt she knows it, but she has a legacy in my family. Sometimes a recipe is really just a recipe. But sometimes, it’s so much more.

Because Someone Else said, “Yes” | Participating in Research Studies

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I’m really enjoying being a part of the patient advocacy group at Georgetown. Each meeting, we discuss many topics, and I always enjoy when the clinician who is part of our groups talks about the new clinical trials and research studies  that are available for breast cancer patients at Lombardi. Frequently, clinicians and researchers will ask us to help them improve recruitment for their studies.

People who are diagnosed with late stage disease are frequently eager to participate in a study– a clinical trial– with the hope that helping test some new drug will cure them. Of course, that’s always a possibility. And for that hope, they will usually gladly go through extra biopsies, blood draws, hair pulls (not even kidding!), and endless paperwork.  All those extra steps are a much harder sell to a woman diagnosed with early stage disease, whose participation in the study won’t get her anything other than standard of care and all that extra stuff to allow researchers to amass data.

But a woman in our group at Georgetown had been speaking to a group about clinical research studies, and something that she said really stuck with me. “I’m here because someone else said, ‘yes.'” Such a simple, profound statement. Breast surgery has come a long way, and the introduction of Tamoxifen, aromatase inhibitors, and Herceptin, which target specific tumor types, have improved treatment options and survival for many patients. Still, some breast cancer patients will recur after treatment, and figuring out who will recur and how to prevent that recurrance is a growing area in research. There is a lot of excitement about the new “Georgetown Method” which could allow doctors to grow a patient’s actual tumor cells quickly in the lab and treat them with a variety of drugs to see which treatments will be most effective for that specific patient, preventing recurrance and substantially increasing long term survival. (Read about it in the Lombardi Magazine starting on page 10.) Yet, for all these advances, and for all those that are to come, patient involvement, often without any promise of personal gain, is so crucial.

Especially for those receiving treatment at a teaching hospital, there are many opportunities for participation in research studies. Right after being diagnosed with cancer, a patient has so many decisions to make, appointments to make and keep, papers to fill out.  And since many studies seem like a lot of work for the patient for mere data collection without the promise of any wonder drug, it is easy to see why a patient would be reluctant.  If there’s ever a time to be selfish, it’s when you have cancer, right? And yet, many women with breast cancer have chosen to put away their cancer card and give up that right to be selfish. Their willingness to participate has given doctors invaluable information that continues to impact the way patients are treated. So to those women who have taken the time, dealt with all the extra assaults to their body, I say thank you. I am here because they said, “yes.”

Race Report | Girls on the Run

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Almost two weeks ago, Emma Clare and I bundled up and headed back to the Girls on the Run 5K for the second year in a row. It was cold last year, but this year was seriously cold. Luckily, we ended up parking a lot closer to the starting area, so we stayed in the car for a long time, and we were able to get back to the car as soon as we’d finished running.  I was a little apprehensive about this year’s race. Of course, I’d been on chemo last year, but I’d been running faithfully, and was as prepared as I could be. No chemo this year, but I’ve not been doing a good job at running, so I was worried that I’d not do as well this year. How frustrated would I be to have done better while on chemo? Thankfully, despite the cold, we ran a good, strong race. My toes were numb and painful pretty much to the halfway point, but we managed to finish about three minutes faster than last year, and this year I was dragging Emma Clare along, instead of the other way around. I felt good, and I’m going to need that confidence as I start training for the Nike half!

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All the girls get a finisher’s medal, but we decided to forgo the photo at the finish line and instead snap one in the warmth of the car.  We also rode with a few friends this year, and that was such a special time getting to know them better. Between the poor preparation, the freezing cold, and the memories of insane traffic last year, I wasn’t too enthusiastic about heading to this race. But we had a good time, and I’m so glad to have had that special time with my big girl again this year.

This Will Be the Year | Nike Women’s Half Marathon

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Last fall, as I sat in the initial consults with my doctors, I imagine they were surprised by my questions. I wonder if they thought I was in denial as to what I was about to go through. In fact, maybe I was in denial. I remember asking my oncologist if she thought I would be able to run a 5K with Emma Clare days after my second chemo infusion. I didn’t ask whether my hair would fall out, how severe the nausea might be, or whether my immune system would be so compromised that I shouldn’t go to the kids’ school on occasion or to church every Sunday. I wanted to know if I could run. Emma Clare and I had planned to run that race, and it was (frankly, probably inappropriately) important to me that I run it. Breast cancer was not about to take that experience from me.

Earlier that fall, Nike had teased the announcement of their inaugural half marathon in Washington, DC. Sally and I had decided we would enter the lottery to run that race in the spring. Having met the authors over the summer, I had my autographed copy of  Train Like A Mother already dog-eared to a training program and was looking forward to the race. In my initial consult with my surgical oncologist in October, I was already asking whether the prospective surgery dates would allow me to be recovered in time to run the half marathon. And I remember standing outside Ray’s Hell Burger, while my parents and brother ate inside with Sally, talking on the phone to Cami from my plastic surgeon’s office. I listened to her lovely French accent as she informed me that I would not be ready for a spring half marathon.

I’ve been having a hard time getting my mojo back when it comes to running, I’ve gotten a little too used to sleeping until 7! But perhaps making the cut for this year’s Nike Half Marathon is just what I need. I am now officially registered to run the race.  Breast cancer took away my 2013 half marathon goal, but this is my year to make sure that breast cancer doesn’t steal that goal completely. Perhaps I need to look at this race the same way I looked at last year’s Girls On The Run race. I planned to run this race, and I will run it.  Breast cancer may have delayed my plan, but it can not take this experience from me.

And so I’d better finish this post and get to bed. I’m going to need to get up early tomorrow. I’ve got some running to do.

Expect the Unexpected | Being the Comforter

~ Jamie ~ Leave a comment

I feel like there could be a series here, though I’m not sure what the other posts might be.  Guess you’ll just have to stay tuned…

So I’m sure that most people think that when someone is diagnosed with cancer, they are devastated, an emotional wreck. Now, that is one possibility, and there’s nothing wrong with that.  And we tend to think that as a friend or relative, it’s our job to comfort them.

Tonight, I was watching the Hawaii Five-O episode from last week. Carol Burnett was guest starring, and she had just been diagnosed with a brain tumor. As she told her family of her diagnosis, I was instantly taken back to a year ago. With only a very few exceptions, by the time I told anyone I had cancer, I had cried my tears.  I knew what needed to be done. I had turned off my emotions and I felt like I had as much control of the situation as was earthly possible. I was surprised at how often I found myself, dry-eyed, hugging and comforting my teary-eyed friends.  Seeing it play out on TV reminded me that these friends were taken by surprise by my news.  They hadn’t had the time to cry their tears, and they hadn’t been with me in the doctors’ offices to hear their reassurances. They felt helpless and were looking to me for reassurance, they wanted to hear me say that I’d be ok.  As strange as it felt when I hugged that first crying friend, I quickly realized that it was normal.  It never bothered me to hug and reassure my friends, in fact, it was probably a good exercise for me to hear myself say over and over again that I would be ok.  Because even though I felt like I had things under control most of the time, I could probably use a little reassurance, too.

Dance if You Want To

~ Jamie ~ 1 Comment

I’m betting lots of you have seen the video of the woman dancing in the operating room before her mastectomy. In fact, a few of you have sent it to me! Strangely, I didn’t think much about it, except that I’ve never had a surgery where I was awake in the OR.  They’ve always given me some nice meds in the IV so that I don’t last much longer than the time it takes to get out the door of the pre-op room.  Why was she still awake, I wondered?  And weren’t they worried about the sterility of the environment?  Of course, she is an OB at that hospital, so I imagine she might have been given a little leeway to do what she wanted.

I hadn’t thought anymore of it until I ran across this article last week.  “You don’t have to dance at your mastectomy,” the author wrote. And so I started thinking.  Everyone deals with things differently.  Deborah wanted to dance, it was her way of showing her friends, her family, herself, that cancer wouldn’t beat her.  And that’s ok. But the author of this article cautioned that it’s ok if you don’t want to dance, too. It’s ok if you want to be scared or sad or angry.

It almost made me feel a little guilty.  No, I didn’t have a flash mob in the OR when I had a mastectomy.  But I do try to keep a positive attitude, and make light of the whole cancer thing whenever I can.  I don’t put a lot of sad or angry on this blog, though honestly, that’s because I don’t have a lot of sad or angry to share.  But just because I’m not sad or angry doesn’t mean that I’m better than someone who is. It doesn’t make me stronger or braver.  It just makes me me.  So you be you, and dance if you want to.