Red vs. Pink | Baseball and Breast Cancer Awareness

September 29, 2014 ~ Jamie ~ 2 Comments

Pentagon breast cancer awareness Jamie Holloway Ah, October. Growing up in St. Louis, the end of September was filled talk of magic numbers and the upcoming pennant race. To support our beloved Cardinals, the streets were a sea of red. October was all about baseball and red.

I did don my Cardinals jersey this afternoon as the redbirds clinched the pennant, but the lead up to October has been a bit different this year. Instead of baseball and all things red, I’ve been reading all my brain can handle on breast cancer and I actually bought a pink dress.

I’m starting off October with a bang– four events in two days! I’m so honored to be working with the DiLorenzo TRICARE Health Clinic at the Pentagon for their Breast Cancer Awareness Campaign. The overarching goal of each of the events is to encourage women to maintain a healthy lifestyle to reduce their risk of breast cancer and to remind women that early detection through screening saves lives. This Friday is my big day, which starts at 0530 with a run with the military staff at the clinic. For you non-military types, 0530 corresponds roughly to oh-dark thirty, which is to say, 5:30. AM. And I will likely be the only civilian. No pressure there. After a quick shower, I’ll throw on my new pink dress and give a talk that’s open to anyone at the Pentagon, sharing a little about myself and some friendly tips for patients, survivors, caregivers, and providers. I’ll have another quick breather before the big event in the courtyard of the Pentagon, where I’ll reinforce the themes of the day and kick off a walk around the courtyard. Representatives from the Breast Health Centers from Walter Reed and Ft. Belvoir will be there to answer any questions and encourage women to set up screening appointments. That will wrap up my day, and while I’m sure I’ll want one desperately, I’ll bet there won’t be time for a nap before I have to head to the bus stop to pick up the kiddos. I’ll also be heading over a couple of other times to give the nursing staff a patient’s perspective and to share some of the recent news from breast cancer research and clinical studies with the clinic’s doctors.

I was definitely a bit nervous when we started talking about all that would be going on this week. But then I realized this is exactly the kind of thing that I want to be doing. I’ll be bridging a gap between scientists, patients, and physicians. It’s a lot all at once, but I feel like this is something that God has really worked out for me. It’s all right here, I just need to prepare and go for it. I’m ready. Three out of four talks are finished, I’ve been faithfully running, and I am now the owner not only of a pink dress, but also a pink running shirt. Thankfully, the Cardinals are once again vying for a World Series spot, so I’ll get to rock my red, but this year, there will be a healthy dose of pink thrown in there, too.

My Ghost Boobs | Phantom Pain after Mastectomy

September 25, 2014 ~ Jamie ~ 5 Comments

So it turns out that it’s hard to find a picture online of a ghost with boobs. Which is probably good. I probably don’t need to remind you that I am a scientist and a writer, not so much an artist. I just felt like this needed an illustration, and this was the best I could come up with. Of course, I’m not really talking about a ghost with boobs, I’m talking about phantom pain and sensations after my mastectomy. My “ghost boobs.”

Most people are familiar with the concept of phantom pain after an amputation. The amputee will feel pain in the limb that is no longer there. It’s a pretty cruel trick that your brain plays, all those screwed up nerves that don’t go anywhere anymore just don’t know what to do, and it’s hard for your brain to keep up. I would never compare myself to an amputee, my life is certainly not affected in the way that it would be if I’d lost an arm or a leg. But I did lose a body part, it’s just that my prosthesis is cleverly hidden under my own skin, and curious kids in the grocery store won’t stare or ask me questions that embarrass their mothers.

So back to the phantom pain part. As I’ve said, not only am I missing a good amount of tissue after my surgery, all my nerve endings are screwed up. The nerves go all the way out to the skin– that’s how you feel touch. In a mastectomy, the surgeon works as closely to the skin as possible, removing all the breast tissue and even some of the subcutaneous (fancy science word for just under the skin) fat. So while it’s possible the the nerve endings are still there, the nerve part that goes through the breast to connect them with the brain is gone. (That’s why the tattooing didn’t hurt much at all.) It’s not a frequent thing, and it’s more often an itch that I can’t scratch than actual pain, but the phantom sensations are really irritating. I don’t know if I’m actually feeling something real but can’t feel the scratching that usually helps an itch, or if there’s really nothing there to alleviate. And any time it could be classified as pain, I’m pretty sure it’s not real– it feels like it’s coming from some place right in the middle of all my silicone. I know there’s not much I can do about it, so I’ve just taken to saying that my ghost boob itches and leave it at that. It turns out, I’m not the only one who’s dealt with this, lots of other breast cancer ladies I’ve met say the same thing. What a relief, there’s nothing wrong with me, physically or mentally. At least as far as my ghost boobs are concerned.

Cancer Shaming

September 22, 2014 ~ Jamie ~ 1 Comment

I’m sure lots of you have heard of the internet sensations of dog shaming and cat shaming, and an eloquently written piece on XOjane recently took on fat shaming. In this post, the author contends with the belief that all overweight people choose obesity through their diet and activity choices. Specifically, she points out times where “well meaning advice” was, in essence, blaming her for her weight. Perhaps she should take the butter out of her grocery cart and replace it with a lower fat alternative; “good for her” for working out at the gym.

I know no one would ever, upon hearing I had cancer, tell me that it was my fault. Yet, a piece in the Guardian made very clear the cancer shaming that I’ve been picking up on lately. It seems every week something new is “associated” with an “increased risk” of breast cancer. Those quotes are there on purpose– so many of these associations end up being little more than a flashy headline.

I love how we all “know” things that help fight cancer. Like antioxidants and green tea, right? I had a friend, who, after being diagnosed with breast cancer, received a big bag of blueberries every week from a well meaning woman at church. I know it was well intended, and thankfully, my friend received them with the appropriate grace. (Who wouldn’t want a bag of forty dollars’ worth of blueberries ever week? Wait! I bet they were organic. At least $60!)

Sure, it’s good to be healthy. There are plenty of reasons to maintain a healthy weight, regardless of the impact on breast cancer risk. But do I really think that if my friend had eaten that many blueberries her whole life, she wouldn’t have gotten cancer? Um, no. And to the friend who made herself and her family eat broccoli every week even though they all hated it because she heard it would prevent the breast cancer that took her mother’s life? I love broccoli. Eat it all the time. Got cancer anyway. And if those blueberries could have cured my friend’s cancer, I’m kind of betting that the doctors would be shoving them down our throats. (Or big pharma would be busy synthesizing the critical compounds and pumping them in our veins.)

I know the media just reports the studies that get published and will draw viewers. But it seems irresponsible to suggest that a woman is at fault for her own breast cancer diagnosis. The thing is, with breast cancer, no one has been able to pinpoint a real cause. Of course, there is a small subset of women who, like Angelina Jolie, carry a mutated form of the BRCA gene, and the cause of their cancer is clear. That leaves the other 95% of us wondering if we did something wrong.

Because I’m doing an awareness event with a wellness clinic, I’ve been digging in to the wellness aspect lately. Maintaining a healthy weight, limiting alcohol intake (the lower the better), and not smoking all reduce a woman’s risk of breast cancer. But if you start out with a one in eight chance of developing breast cancer and manage to cut your risk in half, that’s still a one in sixteen chance. Your chance is smaller, but there’s still a chance. Mammograms have decreased a woman’s chance of dying from breast cancer by catching a tumor earlier, but they haven’t eliminated the chance of dying. In fact, 20-30% of breast tumors, including some of those “caught early” by mammograms, progress to advanced disease. Nearly 40,000 women will die of breast cancer this year.

It’s not a woman’s fault that she got breast cancer, and it certainly isn’t her fault that she’s dying from it. I’m sure not many people suggest that so boldly. Yet many women are so desperately searching for their own “why,” and feel blamed when they hear the latest study or are forced to answer well meaning questions from others wondering the same thing.

As I think about the wellness presentation that I’ll make in a couple of weeks, I find myself walking a fine line. We do need to take action in our own lives. Eat healthy, drink less, move more, and get screened. I think that is a very important message. Sadly, there are no guarantees. It seems so unfair. Even if you do everything right, you can still end up with breast cancer. Found early, treated aggressively, a woman can still die of breast cancer. Shaming others and blaming ourselves (intentionally or otherwise) helps no one.

Giving Purpose to the Pink | Breast Cancer Awareness

September 18, 2014 ~ Jamie ~ 1 Comment

I’ve never been comfortable with all the Pinkwashing that goes on, especially as we approach October and Breast Cancer Awareness month. I have been invited to participate in a couple of different events so far this October, and while I’m so excited for the opportunities, something has really been bothering me. Will I be expected to wear pink?

I’m all for branding an event (I may have gone overboard on a kid’s birthday a time or two), so I understand the power of recognition that comes from the color pink, and especially the little pink ribbon. From a marketing standpoint, it’s a very powerful symbol, and it’s a shame not to take advantage of it.

Still, I feel like so much of the “pink” awareness lacks action. Unlike the days of Betty Ford, women aren’t afraid to talk about breast cancer now, it’s not something discussed only in whispers. I’m not sure we really need to be more aware that it exists. My friend, Karen, is a Nurse Educator at the Pentagon, and I am working with her and the clinic there on a few talks and events. Knowing my reticence for all things pink, she suggested an acrostic– a way to use all of that pink to engage women to actually take some action. Thanks, Karen, for getting me started on the idea– genius. I quickly set to producing a pretty, pink infographic that could harness a little of the pink-hued enthusiasm to deliver a worthwhile message. And so I present to you “Giving Purpose to the Pink:”

Giving Purpose to the Pink WEB

I prepared this infographic to use in a talk that I’ll be giving to a mixed audience, and it’s definitely better with a little explanation. Being overweight, drinking alcohol (as little as three drinks a week), and smoking all raise a woman’s risk for breast cancer. Still, there are no guarantees, so identifying any lumps or thickening in your own breast, as well as keeping up with your mammograms, are the best ways to find a tumor early, while it is still treatable. And it’s important to know the facts about breast cancer– don’t let yourself be scared by every news story– underwire bras and deodorant do not cause breast cancer. But also don’t let survivors like me give you a false sense of security. Nearly 40,000 women will die of metastatic breast cancer this year. Breast cancer is not to be taken lightly.

I very well may end up with a pink dress yet this year. (I even bought a pink running shirt with a little ribbon on it. I swear it’s tiny.) But as you see all the pink in the coming weeks, as you perhaps even buy some Pinktober wear yourself, I would encourage you to remember that breast cancer is deadly and all that pink gear should be about more than feeling like you’ve done a good deed. Make smart decisions about your own health. Take action. Give purpose to the pink.

Missing Cancer | Showers

September 17, 2014 ~ Jamie ~ 1 Comment

Back when my hair started falling out, I remember several people telling me: “Just think of how much time you’ll save in the shower!” I know it was said with the best of intentions, but maybe don’t go saying that the next time you encounter a friend with cancer.

Still, showering was much simpler. My showers didn’t get shorter, they just got better. Not only did I get to skip the shaving, but I got to skip the stress of just needing to shave. Trying to remember if I’d shaved my armpits first, or if I needed to do them before I got out of the shower. With no hair, I could wash my head or not. I usually conditioned my bald head, afraid that the skin would dry out. (A bald head is one thing, a scaly bald head is something else entirely.) Instead of spending all that time washing and shaving, I just stood and enjoyed the hot water on my body. A quick slather with some jojoba oil when I hopped out, and I was ready for makeup.

While I was on taxol, I ended up with a fair amount of bone pain for a few days each cycle. It wasn’t so much a sharp pain, but it became very hard for my legs to be comfortable. Enter the wonder shower– sometimes two or even three times a day I’d hop in and let the hot water soothe my achy body. With no hair, I could hop straight into bed after my shower and didn’t even get cold from my wet head. Showers were such a relaxing, enjoyable time to me, I really do miss having a shower without having an agenda.

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.

Online Breast Cancer Resources

September 15, 2014 ~ Jamie ~ 1 Comment

I know that a lot of people probably come to this site looking for answers to questions after a breast cancer diagnosis. I will be the first person to tell you to stay off the internet if you have questions– a doctor is always your best bet. But I am also the first to admit that a lot of questions– the ones that seem the scariest of the most pressing– come just after a doctor’s office has closed for the day. Or the weekend. If you’re heading out to the internet, please, please, please check the source. All internet information is not created equal. I think you could probably find nearly everything you need in just two places.

Cancer.net is a great site curated by ASCO (the American Society of Clinical Oncologists) for patients. Since it is designed for patients, the information is easy to understand– conversational, not overly technical. And because it is vetted by oncologists, it has complete, reliable information. Besides offering basic cancer information, they feature a lot of articles and videos talking about everything from choosing a doctor, managing side effects of treatment, dealing with the emotional and financial ramifications of cancer treatment, and even thriving in survivorship once you’re declared cancer free.

My other favorite American Cancer Society’s page, I’ve headed there for years– that’s always where I got my breast cancer incidence stats back in grad school. This past weekend, I was working on a project and took the time to look through their annual publication, Breast Cancer Facts and Figures. This is a gold mine! It has all kinds of stats on incidence broken down by region, age, ethnicity… But they also have great information on diagnostic procedures, treatment plans, and pathology results. They cover nearly every breast cancer question I’ve heard, but the kicker is that they cite their references! This is a huge deal to science nerds like myself– not that I’m going to read every original article they cite, but when it’s important, I like being able to find the original, peer reviewed document to support what I’m going to say.

I’ve started a new Resources page here on Run Lipstick Chemo. Links to these two pages will be there, and I’m going to include some local resources as well. I’ll update it as I find new things to share, and I’ll do my very best to keep the standards high on that page so that you can trust the information you find there. It’s a work in progress, but I feel like these two resources stand on their own, so wanted to give you the heads up as soon as possible.

Gifting a Friend with Cancer

September 8, 2014 ~ Jamie ~ Leave a comment

finisher 2a

It seems that one of the most frequent questions I’m asked is about how to gift a friend with cancer. I have such generous friends who know me so well who gifted me with such thoughtful tokens. The last time someone asked me this question, I started to list for her all the things people had given me and things that I’ve given others since. But it occurred to me that the perfect gift for me might not be the perfect gift for someone else. There aren’t a whole lot of things that someone going through cancer needs. Yes, once your hair falls out, you’ll need a few good hats, so that’s a nice place to start. But really, gifting a friend is about making her happy. So what makes her happy? If chemo makes her feel badly, then probably don’t buy food or smelly candles. And if she’s trying to work and is exhausted, then don’t insist on taking her out for dinner. For me, the best gift was always time. An easy run, thrift shopping trip, or coffee or lunch date was exactly what I wanted. But if you don’t live close to your friend or your schedules just won’t match up, here are a few ideas. Just remember, keep in mind her personality– give her something that will make her smile!

Cupcakes. I got bunches and loved every bite!
Starbucks card. If you can’t go with her to coffee, you can help her take someone else!
Jewelry. Of course, who wouldn’t love a little blue box? Alas, I had to earn that one. But several friends know that a pretty bracelet or pair of earrings always brightens my day. Even almost two years later, I still smile, remembering the thoughtful giver when I wear a special gift.
Something completely frivolous. I would never buy an Us Weekly magazine. Not that I am above being sucked in by salacious celebrity gossip. But I would feel guilty, I should spend my money on something more redeeming. But when it comes from a fun friend? What an indulgent way to pass the time!
After I had my mastectomy, the neighborhood ladies took me to get a pedicure. Such a fun outing! A gift card for a pedi would be a great gift for a friend after surgery, but a mani/pedi is off limits while she’s on chemo. Maybe a gift card for a massage instead?

Of course, especially if you live nearby, things like childcare and dinner are always appreciated. Pitching in with some friends for an occasional visit from a house cleaning service would be amazing. But really, what I wanted from my friends more than anything was their friendship. Pay attention to her– what makes her happy? What is making her smile right now? Lip gloss, twizzlers, a sassy tee, or her very own cancer card. (Man, I wish I’d seen those back when I was in treatment. I would have whipped that bad boy out. I wonder if it would have gotten me out of a parking ticket if I threw it in my dash instead of the parking meter receipt…)

I had a friend who was so sick during her chemo, the only thing that she wanted to eat was an Egg McMuffin, so I would drop one off every once in a while. When I was diagnosed, she had moved away, but sent me the sweetest card with a McDonald’s gift card. You should have seen the smile on my face. Clay thought it was the strangest gift ever, I don’t even really like McDonald’s. But I understood the gift, and it made me so happy. Another great gift? The back scratcher a friend picked up after I complained that percocet made me itchy and I couldn’t scratch my own back after my mastectomy. Neither of those gifts came in a fancy blue box, but they both showed me that my friends were really listening to me and thinking of me. As much as I love me a little blue box, I’d prefer a thoughtful little gift any day.

Definitely Blame the Camping

September 5, 2014 ~ Jamie ~ Leave a comment

This was the bulk of our crew when we headed camping two years ago. I call it the ill-fated camping trip. I wasn’t the most eager camper to begin with. Then we lost Turner after dark and our sweet babysitter had a run in with the law when she tripped our house alarm (we shouldn’t have set it since we’d planned for her to come take care of our dog!). That sort of puts a damper on things… I was so thankful for the trip, though, as it gave our family the chance to get to know some of our neighbors so much better. And we really did have a good time. Who needs to sleep, anyway? Today we were talking whether I was planning to chaperone an overnight fifth grade camping field trip. (Um, no.) A friend who was on that ill-fated camping trip said I had the best excuse for not going camping ever. I didn’t have cancer before I went camping. I came home, then I had cancer. Argue with that one.

The Great Mammogram Debate | No More Excuses

September 2, 2014 ~ Jamie ~ 4 Comments

mammogram debate helvie Today was back to school day at our house. Thank goodness. Those kids needed to go back to school. For all of the learning, of course. As it turns out, apparently I had a little learning to do myself. (And yes, that’s the dog’s head. She’s missing her playmates. And driving me crazy.)

When we went around the circle of parents left at the bus stop discussing the glorious plans we all had for the day, they were about what you’d expect. Jiffy Lube, Target, spider removal from a chandelier… My goal for the day: make some lists. You know I love me a good, long list with checkboxes. Got my list made. (Check.) Then I proceeded to start checking off the boxes. Of course, I started with the easy ones. Then I got down to a tougher one: the great mammogram debate. (Insert dramatic dun-dun-DUNNNNN music here.) After hearing a lot about overdiagnosis and the inability of mammography to reduce the number of advanced cancers, I’d heard something about a new study that contradicted it, and decided I needed to clear it up.

Now hold on tight folks, it’s about to get a little science-y up in here. But I think I can get you through it. If a screening protocol is working, then one would expect to see more diagnosis of early stage disease and fewer cases of advanced disease. If you’re “catching it early,” then it will be diagnosed before it advances. Make sense? A study published in the the New England Journal of Medicine (very reputable) by Bleyer and Welch in 2012 looked at deaths from breast cancer in a roughly thirty year period since the introduction of mammography, and found that while there was a significant increase in overall cases of breast cancer, there was only a marginal (read: tiny) decrease in advanced disease. This led the authors to conclude that mammography was leading to a significant overdiagnosis of breast cancer (leading to the treatment of disease that would otherwise not kill the patient) without substantially decreasing the incidence of advanced disease. Their takeaway: mammograms don’t catch advanced disease early and catch a lot of otherwise insignificant disease. (Their subtext: mammograms are more trouble than they’re worth.)

I have to be honest. I didn’t like this. This put mammography into the “non-evidence based” decisions in my mind, right up there with contralateral prohylactic mastectomy. The evidence didn’t point to its benefit, but I just couldn’t imagine that mammography didn’t have a place in helping breast cancer patients. Until today.

In today’s issue of Cancer (also reputable, published by the American Cancer Society), Helvie et al. (that’s scientist speak for “and others”– Helvie’s group) published another look at that same data set. But they made one little tweak to their analysis that made a big difference. They adjusted their data for “temporal trends,” the change in incidence of a disease over time independent of any screening. (They looked at pre-mammography data and data from countries without widespread use of mammography to determine that each year, the number of breast cancer cases rises between one and three percent.) When they adjusted the data for this increase, they found that there was a marked increase in early stage breast cancer diagnoses, but a significant decrease in the number of advanced cases. They mentioned that their data doesn’t take into account who had a mammogram and who didn’t– it’s just all of the breast cancer deaths in the mammogram era vs. the pre-mammogram era. This would indicate that number of advanced cases would be even lower if they were looking only at a population of screened women. Did you stick with me, folks? That’s huge! That means that mammograms are catching potentially deadly cancers while they are still treatable. This study validates mammography as a screening tool. For years, studies showed the benefits of mammograms, but the Bleyer and Welch paper called that into serious question. Fears of needless biopsies and unneeded chemo compounded with their data left many women encouraging others to skip the annual mammogram. Somehow, I doubt this will be the last word in the great mammogram debate. But it is a thoughtful review of an excellent data set that agrees with many other studies. That’s enough for me. I’ll climb back up onto the mammography soap box with confidence. They do make a difference, ladies. Stop making excuses.

And now that I’ve finished my homework for the day, I’ll climb down off my soapbox so that I can go pick up my kiddos. I can’t wait to hear what they learned today at school. Won’t they be surprised when I can tell them that I learned something, too?

The Cancer Book, Part Two | Keeping Track of My Breast Cancer

August 29, 2014 ~ Jamie ~ Leave a comment

Once I was in posession of my perfectly un-pink, spiral bound notebook, I set to filling its pages. In the early days, it was merely a to-do list: long distance friends to call before anything went on facebook– that’s no way for them to find out I had cancer, letters to write– authorization for friends and family to pick up my kids from school if I were unable, prep for diagnostic procedures. I carried it with me everywhere, even to the bus stop. Nurses would call all the time, with very specific prep for upcoming procedures or with more appointments for me, and I liked to have my book so that I could write everything down in the same place.

My cancer book evolved, becoming a place for me to write questions to ask at my next doctor visit. I was always careful to leave space for the answer below the question so that I didn’t have to turn the page back and forth between questions. When I sat down in her lovely office for my very first meeting with my oncologist, she saw me pull out my notebook and told me that I didn’t need to worry about writing things down, she would write down everything I needed to know while we chatted and I could take her notes with me. I tried not to take any notes the first few minutes, but I couldn’t help it. I’m so glad she didn’t challenge me– taking my own notes was part of my process.

During chemo, I got pretty hard core with my cancer book. Each day, I would draw a horizontal line to separate the page for a new day. Besides the day of the week and the date, each day was labeled to help me track my response to chemo. “R2D1” corresponded to the first day of the second round of chemo. On the left for each day was a column of the meds I needed that day with checkboxes to mark when I took them. Since I was supposed to take my temperature each day to catch any infections early, I always left a blank where I could record my temperature. I made notes about my sleep– how long I napped and how well I slept at night. I would record any symptoms or reactions, things like hot flashes and bone pain, and when I started taking taxol, I also had a section where I recorded the extent of my neuropathy.

Now that I write it all, that seems like a lot. It really wasn’t that much, but the repetitiveness really helped it become second nature. Having it all written down made it easy each time I headed to the doctor, I could quickly give her solid details and she could assess if there were things that we should change. (We changed my meds several times based on how I was feeling.)

Out of chemo, beyond surgeries, the cancer book doesn’t live in my purse anymore. While I don’t write down every single headache, if I notice something a few days running, I make a note. It’s really reverted to the stage where I write down questions or concerns for my next appointment. Whether it was during chemo or now, in that crucial stage of survivorship where the fear of recurrence is always lingering just beneath the surface, it’s amazing how much easier it is to see patterns emerge when looking at pages in a notebook instead of trying to recall the details on my own.