Category: survivor

It’s just a recipe, right?

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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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photo 1

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!

photo 3

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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2014_nike_women_header

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

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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.

On Not Having Cancer

~ Jamie ~ 1 Comment

If you thought having cancer was hard, you should try not  having cancer. Before cancer, little ailments were just that.  Little.  Easy to explain.  During treatment, everything  was chemo’s fault.  After cancer, no matter how hard I try, one thought creeps back in…

before and after

Don’t get me wrong, I don’t obsess over cancer coming back.  Thankfully, I’m far more logical than I am emotional. So every time cancer creeps into my mind, I can convince myself pretty quickly that normal is normal.  I have a wonderful oncologist who has made it very clear what constitutes “more than normal” and requires an office visit.  And I know that she will listen to any concern I bring to her, no matter how irrational, with the utmost compassion and professional courtesy. But I can’t say that I’m not looking forward to the day when I am confident that my headache is just PMS.  At least I know that the blisters on my toes are my own fault.

On Choosing a Plastic Surgeon

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Those first two weeks after I was diagnosed with breast cancer, I went to a flurry of appointments.  There were quite a few diagnostic and follow up procedures, in addition to appointments with my surgeon, my new oncologist, and two different plastic surgeons.  At the time, I’m sure I would have downplayed the importance of choosing a plastic surgeon.  Perhaps my surgeon knew that, and that’s why she insisted that I meet with at least two before I settled on one.

I am certain that I made the right decision when I chose my surgeon.  I imagine if you’re searching out a plastic surgeon for botox or a tummy tuck, you’re either prepared to feel a little vain, or it’s just not something that you even worry about. But if you’re like most breast cancer patients, it can be a little awkward to go into a doctor’s office asking lots of questions about how great you’ll look after he does his job.  I mean, you just want to survive the cancer, right? It shouldn’t matter if you come out on the other side with a great rack.

This is just one place I think my surgeon was great.  He made it very clear from the beginning that he does lots reconstructive surgeries (a must!) and wanted to be sure that I thought I looked good, period, not just good enough  for having had breast cancer.  He showed me pictures of women who had made all different choices– you might be surprised all the choices someone in this position actually has.  Bilateral mastectomy, or single with a lift on the healthy side to maintain symmetry?  Nipple sparing, nipple reconstruction, 3d tattoo? Stay the same size or go bigger?  He was at the same time realistic and optimistic about my outcome.  Not only did he want me to be happy with how I looked, but he wanted to be sure that  he  was happy– that I looked natural and not like some over-done Hollywood B-lister.  Since there is no fat or breast tissue left after a mastectomy, implants alone can end up looking pretty fake, so he uses fat grafting to fill in around the implant.  This means that during the surgery I had liposuction (not enough to really make a difference, though, don’t get excited) and he injected that fat around the implant, giving a much more natural look. He was also very thoughtful about the incisions, making sure that my scars won’t be visible should I wear even a pretty skimpy bikini top.

Being able to talk easily and honestly is so important, this is a doctor who I saw several times a month.  He not only made sure that he answered my questions, but always remembered the name of my husband or what ever friend came along with me, and called them by name when asking if they had any questions. We talked about lots, and as we neared the end of my expansion, I remember him asking if I’d tried on some of my dresses to see if I liked the way they looked, or if we needed to expand a little more.  He managed to find a way to let me tell him what I wanted without forcing me to outright ask for bigger boobs.  And after the final surgery, he honestly wanted to know what I thought, to be sure I happy with the size and symmetry.

Sure, these aren’t the life and death decisions that the oncologist makes.  But when you’re considering a doctor with whom you have to be painfully honest in some painfully vulnerable situations, and who is in control of how you feel about yourself every time you look into the mirror, it’s worth taking the time to make a good decision.

Dreading the Mammogram | Amy Robach Diagnosed with Breast Cancer

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Good Morning AmericaPhoto By Ida Mae Astute/ABC
Good Morning America                                                                    Photo By Ida Mae Astute/ABC

Like many today, I read the words of Amy Robach, the ABC News Anchor who was diagnosed with breast cancer last month after an on-air mammogram.  She wrote of being approached by a producer pitching the segment and described the proposed mammogram as, “something I really didn’t want to do, something I had put off for more than a year.”  She is 40, the age at which it is suggested that women begin getting mammograms.  And yet she had put it off.  Like so many women, she avoided it.

Sally and I were talking this afternoon, and we wondered, why do so many women put off their mammogram?  Admittedly, there is some pain associated with the exam.  And yes, it takes some time out of your schedule.  I’m struggling to remember how long it took, I think I had an MRI right after mine (now that’s a real time suck) and we were still out in time for lunch.  So it’s a little bit of pain and less than a morning of your time.  It’s not really the pain, and it’s not really the time.  It must be the fear.  Even knowing that most women who have a mammogram have no malignancy.  It’s as though the fear of what we might possibly discover takes over and convinces us, subconsciously, that it’s better not to know.  I imagine it’s the same reaction many women have when they find a lump in their breast.  (I’m so glad that first lump that turned out to be nothing taught me what to do when I felt the real  lump last fall.)  And yet, I’ve never met a woman diagnosed with breast cancer who wished she just hadn’t found out, who wished she’d been diagnosed later.

I know plenty of women who’ve had nothing but normal mammograms, and most complain about them– hating to get them done. (Though, to their credit, they get them done anyway.) But as a woman who’s had breast cancer and is looking at it in the rear view mirror, I can say with confidence that you gain nothing by waiting.  It really isn’t better to just not know.

And to Amy, and to any other newly diagnosed women, I can only leave the words a friend of mine offered me after my diagnosis. They meant a lot to me because a few years prior, she’d been in the same spot, looking at her two beautiful children, facing chemo, surgery, uncertainty.

You’re stronger than you think.  You can do this.

Pixies by Choice

~ Jamie ~ 2 Comments
redlipstick-102
A few days following my most recent haircut wearing Russian Red lipstick by MAC

charlize          michelle williams

beyonce 2                   pam anderson

jlaw

Charlize Theron was one of the first celebs with whom I related when my hair was growing back in.  I still love her hair in that first picture– she is so beautiful, and her hair just looks perfect to me.  And of course, Michelle Williams has been sporting her pixie ‘do long enough to be one of the first images that pops up when you google it.  Beyonce chopped off all her hair this summer, but I have to admit being a little disappointed when she was photographed in a long wig just a few days later.  And just this week, Pamela Anderson ditched the long locks that have been a major part of her identity for decades, and Jennifer Lawrence followed suit.

It’s probably easier to keep up with a pixie hair cut when frequent haircuts are de rigueur and a stylist follows you around with an armload of product, ready any time a hair goes awry.  And of course, when they’re ready to grow it out again, they’ll have the support of that same fabulous stylist, helping them make the best of a hard hair situation.  I’m so glad that I have Dragan by my side, helping me as I try to grow mine out.  I love it short, but I loved it long, too, so we’re going to see if I can stand to let it grow.  But at least I know that I’m in the very best hands, or scissors, to make the growing out process as painless as possible.

photos: Charlize Theron/Michelle Williams/Beyonce/Pamela Anderson/Jennifer Lawrence