Hair Update | Four Years and Counting

Four years ago, Sally and I set out for a fun photo shoot day to document my barely-there hair. It was soft and blond, and while it definitely still looked like a decision that was made for me, I actually really liked it super short. So it seemed that four years later was a good time to check in. At one point, I figured out that it would take 4.9 years for my hair to completely grow back to its pre-chemo length, and it turns out that math was pretty good. So for a little walk down memory lane:

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Three years of hair growth, starting in May 2013, finishing in April 2016

There were definitely struggles, especially when I was a week or two away from a haircut. But really, I liked a lot of the styles as it grew. I put this collage together for a new friend who is starting to grow out her hair after chemo and had asked about products. I realized that since we’ve only known each other around 6 months, she never saw my short hair. And as I put it together, it struck me how much I really loved the 6-9 months stage (pictures 3 and 4).

So I’ve been thinking about that hair for a while now. I even had a dream that I showed up and demanded that Dragan cut it all off! And while I fantasize about that a lot lately, I can’t seem to take the plunge. It’s taken so long to get to this point!

Curled in November 2016, straight today
Curled in November 2016, straight today

I was having a hard time figuring out exactly why I can’t cut it. I really did love the way it looked short, and I loved the powerful feeling short hair gave me. But it took so long (four years!) to get to this point, and there were lots of maintenance haircuts and more than a few rough patches. And while it was quicker to get out the door, no ponytail could change my look or save a bad hair day.

But I realized something funny last week. I was in Illinois, seeing friends and family I hadn’t seen in years. In situations like that, people want to ask if you’re still healthy, but they have a hard time knowing how to do it. I choose to just make it easy and at the first suggestion,  I will say something about feeling great and having good reports at my latest checkup. Now, to emphasize how long it’s been, I have caught myself mentioning that my hair is long again and I’m feeling great. And so this weekend I realized it. My long hair is a milestone. The further the end of each strand of hair is from my scalp, the further I am from cancer. Now when I tell people that I had cancer, they can quickly know that it was a while ago, because otherwise, I wouldn’t have such long hair, right?

My hair desperately needs to be cut. As a matter of fact, I think my last haircut was just before that curly shot in November. The ends are starting to split and it’s just getting that unhealthy look to it. I had been putting it off, and about the same time I realized why I’m holding onto the long, high maintenance hair (which I do love, too, by the way), I realized why I haven’t scheduled that appointment. I can’t decide whether to ask for a trim or to go back in time three and half years.

Three Years and Counting | The Great Post-Chemo Pixie Growout

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It’s been a while since we had a hair post, no? Since it’s been three years this week since my diagnosis, I thought it might be fun to see how my hair has changed each October…

  • October 2012: That’s how my hair looked when I was diagnosed. Gorgeous, right? I know they were all just being nice, but at one point I thought I was going to cause physical harm to the super sweet nurse who must have been the twelfth medical professional that week to tell me that my hair was beautiful. It was all I could do not to remind them that I was there because I had been diagnosed with breast cancer. I mean, they all got that it was about to fall out, right?
  • October, 2013: Just six months of growth after chemo and it was so dark and stylish! Instead of words like beautiful, people now told me that I looked strong and fierce. Man, I loved that hair, and I loved being strong and fierce! It’s funny how people assume things about your personality because of the way you choose to wear your hair. (And I loved feeling like I could pull off such dark lipstick–that Nars 413BLKR, was a go to back then!)
  • October 2014: I snapped this before heading off to a conference on 3D mammography. That was admittedly the start of a rough hair year. I had to fight the weather girl vibe on a daily basis and eventually went to a flat-ironed spiky look most days to avoid the over rounded coif that my hair apparently prefers.
  • October 2015: The light at the end of the tunnel! I’m pretty sure I had my hair like this once on purpose! It’s still a little short to get into a ponytail without too many little clips holding in stray pieces, but it’s pretty much a normal hairstyle for me now. I don’t hate it every minute of the day, and that’s major progress. It’s lightened up, too, thanks to time spent outside with the kiddos and my running buddies.

I guess I have to count it a win that I was happy with my hair in three out of four pictures… I’m on my way back to the first ‘do. If I ever make it, please don’t tell me that it’s “so 2012.” I think my family would still love for me to get back to the old pre-cancer me for a while, and I’m finally close enough that it seems possible. I just hope they don’t totally revolt when I decide I’ve had enough of the blow outs and curling iron and chop it all off for the 2013 look. But who am I kidding? At that point, they can revolt if they want. Because the next time a huge pile of my hair ends up on the floor, it will be by my choosing, and I think I’ve earned the right to pick my own hairstyle!

Thanks to Sally Brewer for the 2013 picture and Crystal Hardin for capturing the 2012 image just two days before Dragan shaved my head.

On Being Med-Free | Tamoxifen and Long Term Breast Cancer Treatment

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Forgive the old picture, but I don’t have any current pics of my meds.  Because I don’t have any meds.  Which is sort of a blessing and a curse.  It’s great that I don’t have to remember to fill a prescription and remember to take a daily pill.  It’s really great that I don’t have to deal with side effects.  What’s not so great, you may be wondering? I’m not actively doing anything to help prevent a recurrence.  If you know someone who’s had breast cancer and finished her treatment, odds are good that she’s taking a pill every day for the next five or ten years, and so it’s an obvious question to wonder why I’m not.

And this is where we go back to the science.  Remember when I explained about how my breast cancer is called triple negative? (Yep, if you look at that post, I used the same picture! Sorry!) Pathologists look at three main receptors when classifying breast tumors: ER, PR, and HER2.  Since my tumor didn’t have any of the three, I am considered “triple negative.” Tumors that express ER or PR are considered hormone responsive, and they make up 60-70% of newly diagnosed breast cancer cases.  These tumors use estrogen to grow, which means that shutting down their ability to use estrogen can shut down tumor growth.  No tumor growth means your tumor won’t kill you.  Obviously, hormone-targeted therapies have made a significant impact in the management of hormone responsive tumors.  There are several ways to manage hormone responsive tumors long term.  Tamoxifen is the most commonly known, and it acts as an anti-estrogen in the breast and effectively shuts down estrogen signalling.  Other drugs (raloxifene, toremifene, and fulvestrant) work in a similar manner.  Aromatase inhibitors halt the production of estrogen (letrozole, anastrazole, and exemestane) and can also be used to starve the tumor of estrogen.  (Fun fact– a woman’s body uses testosterone to make estrogen using an enzyme called an aromatase, so aromatase inhibitors prevent that conversion).  In premenopausal women, ovarian ablation (with drugs like gosserelin or leuprolide) can be used in conjunction with aromatase inhibitors, and have recently been shown to be very effective.  These treatment regimens are long term– five years used to be the standard, now some studies indicate ten years is even better– and are not always tolerated well.  Like any treatment, some women don’t have many side effects, but for some women, the treatment causes significant quality of life issues leading them to choose to stop treatment.  (This is certainly not a decision to be made without talking to your doctor! I’m just saying that it happens, good or bad…) Most women deal with some side effects that fall into the undesirable category, but are considered a reasonable trade off for the reduction in risk of recurrence.

All of that is to say that at least 60-70% of women treated for breast cancer benefit from long term hormonal treatment.  But for those of us without hormone responsive tumors, there is no reason to take the meds.  Our tumors don’t use the estrogen, so blocking it won’t help us.  And herein lies the blessing and the curse.  I don’t have to take daily meds and deal with the side effects, which is awesome.  But I’m also left in the position where there is no medication that I can take that will reduce my risk of recurrence, and that’s a little less awesome.  I’m just going to count on the fact that the chemo did its job and keep running, running, running.  (I do wish it would warm up, though.  It’s a little cold and icy to enjoy running right now!) I can’t take tamoxifen to help me, but exercise has been shown to reduce recurrence risk.  And so I will run.  As one triple-negative friend put it: “Running is my tamoxifen.”

For a more complete discussion on hormonal therapy for breast cancer, check out what this fact sheet from NCI (National Cancer Institute).  It’s complete and not overly technical.

The DC Ladies Interview

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Do you read the DC Ladies? It’s a fun lifestyle blog for women, by women, in the DC area.  I love their tagline: the most fabulous women in the most powerful city. So I feel just a little fabulous today to be featured on their site.  It’s my first online interview, and I think they did a great job with it.  Shelley’s questions pushed me to think about things in a different way, so even faithful readers here will probably learn something new, and it is such a privilege to share my story with a new group of readers.  Check it out, and enjoy your holiday Monday!

Coming Soon to a Doctor’s Office Near You | Breast Cancer Treatment Guide

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You know those magazines that lay on the tables at your doctor’s office? I guess it’s more because of my stage of life, but I tend to think of all the pregnancy mags they have at an OB’s office.  There’s a new one every quarter or so, except they all have essentially the same information, just repackaged for the next crop of pregnant moms.  Apparently, they make these magazines for all kinds of conditions, and of course, breast cancer is no exception. image

This Breast Cancer guide is published by Healthmonitor and is offered to patients for free in doctor’s offices.  I was contacted by the editor who had come across my blog and was hoping that I would contribute to the upcoming issue.  She had gleaned several things from my blog and used a few tips that worked into the issue.  I sent her a few photo options, but I love that she used this one– it’s one of my faves from a session Sally did last May. For some strange reason, I really love that I can see my port scar just under my collarbone.

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I’m sure it will eventually be available online, though for now, you could look for it when you head in for your annual mammogram!  The editor sent me a PDF to preview this week.  I have to admit feeling a bit starstruck (and a bit like a nerd!) when I recognized Shana of The Mom Edit (formerly Ain’t No Mom Jeans) on the page before me!  She’s a fun mommy fashion blogger who I followed before she was diagnosed with breast cancer last year– though I must admit I followed more closely after her diagnosis.

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I appreciated the opportunity to be a part of this project.  I’ve been honored to write for the Arlington Magazine and to do the interview on Let’s Talk Live, but this magazine will put the name of my blog in front of actual breast cancer patients.  I am humbled by the idea that newly diagnosed women, looking for any answer they can find in the stack of information they take home from the surgeon’s office, might read my words or head to my blog and learn something that will help them or give them a little extra confidence as they approach their treatment.

Chemo: Before or After Surgery | Neoadjuvant Chemotherapy

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It seems like I’ve been revisiting that morning in the surgeon’s office a lot lately.  After we talked about the fact that I felt pretty sure I wanted a double mastectomy, my surgeon confirmed the other thing I’d been thinking– that I would need chemo. My oncologist would talk to me about the specific drugs I needed, but my surgeon told me that I would have the option of doing chemo before or after surgery.  Again, she advised me that neither option had been shown to increase overall survival.  Again, almost instinctively, I told her that I wanted neoadjuvant chemo– chemo before my surgery.

It’s not uncommon to have the opposite reaction. Many women have a “get it out” kind of reaction and want surgery as soon as possible. But I knew that the only reason a patient receives chemotherapy is if there is a chance that even one teeny cancer cell has escaped past the original (removable) tumor. I couldn’t handle the thought that even one little cell was setting up shop somewhere else, growing and spreading even more while my body was healing from surgery.  I didn’t want to wait a few weeks for surgery and then at least six more weeks to heal before I could start chemo.  My oncologist agreed that was a reasonable conclusion, but also pointed out that she liked the fact that it would enable her to watch how my tumor responded to the chemotherapy in vivo— that is, in living tissue.  (Discovering I was a scientist early in our first meeting, I wonder if she knew how much the words in vivo would mean to me as a scientist? In vitro studies– cells in a dish– are crucial to the research process, but artifacts come along with the artificial environment, in vivo studies have so much more validity.) With breast cancer, tumor dormancy is always a big fear– that there are some cancer cells that can somehow evade chemo and sit dormant for years before they begin to grow again and cause distant metastases that can take a patient’s life. We know, in general, that triple negative breast cancer responds well to the chemo regimen I would be taking. But if I had neoadjuvant chemo, we would get to see how MY triple negative tumor responded.   My oncologist and I agreed, if even one cell of viable cancer made it through chemo, I would do another chemo regimen after surgery.  If that one cell could survive, maybe another one, one that managed to escape my breast, survived, too.  Being able to see how my actual cancer cells responded to the drugs gave my medical team such valuable information.  The only thing the pathologist could find in the breast tissue removed was some scarring– he could see where the tumor had died.  Every last cell was dead.  Of course, there are never any guarantees, but a pathological complete response after neoadjuvant  chemo is the best scenario I could have imagined after hearing the words, “You have cancer.”  If I would have had surgery first, and then chemo, it’s likely that the chemo would have been just as effective.  But with the original tumor removed, I wouldn’t have the confidence that the words “pathological complete response” have given me.  It’s always good to be in a good place, but it’s so much better to know that you’re in a good place, so that you can truly appreciate it.

Social Media and Cancer

(This is an old picture. I’ll try to get something of my new haircut soon!)

Sadly, I have to admit that my phone is never too far from my hand.  It can definitely be a big distraction from real life, but it can also be a very powerful tool.  More than once, my mom has called me on a Monday morning to tell me that an acquaintance passed away over the weekend.  She was incredulous that I already knew. From Facebook. (In this case, the word Facebook must be read with an evil, raspy voice.) To be sure, there are people who share things they shouldn’t online. But I quickly found that, when used appropriately, the internet could make my life much easier when it came to my cancer.

  • Helping Hands: My friends set up a Helping Hands site that was wonderful. It let us set up a calendar where we could add tasks that I could use help with– dinners and play dates were my main needs. Other friends have also added things like rides to treatment or help running errands. Somehow, it made it easier for me to ask for help, knowing that people had the freedom to sign up to help or not– there was no pressure.  The Helping Hands site also had a place for a journal, which is where this blog began. Friends and family could check in every once in a while, or they could sign up to receive emails anytime I posted something new.  (You can subscribe to new posts on this site, too, by signing up at the box on the right.) There are other similar sites– CaringBridge has a journal but no calendar sign ups, and yes, there’s an app for that. StandWith is in its final stages of development, and will let you push specificrequests to certain groups of people (maybe rides to treatment to close friends, meal requests to acquaintances).
  • Facebook: As much as my mom hated that I found out about someone’s death on Facebook before she told me, the truth is, it was shared by someone who had the right to share. Facebook is a great way to connect with family and friends, sharing information with lots of people in a single click. It gives them a place to respond without feeling like they’re bothering anyone. I always made it a point to post a picture of myself on chemo day to let people know that I was doing ok.  It wasn’t a sad place, and I may have been plugged into a machine delivering poison to my body, but I was smiling and enjoying some kid-free time with a friend.  Now I use my Run | Lipstick | Chemo facebook page to share new blog posts and other cancer related stuff.
  • Twitter: Yep, I’m on twitter now. A twitter friend (I’d give credit, but I don’t remember who deserves it!) said it best: Facebook is for the people who love you, Twitter is for the people who understand you. I do interact with some real-life family and friends on twitter, but most of my interactions are with people with whom I share a common interest, but who I’ll probably never meet. I’ve made some great connections on twitter with others who’ve gone through breast cancer and some of the most caring care providers. Getting involved in the #bcsm (breast cancer social media) group has given me new perspectives, new friends, new things to think about. And it’s a wonderful feeling to walk into a conference venue with hundreds of people, knowing that while you haven’t met them in person (yet), you have friends in the room.
  • Instagram: Nope. Maybe some day, but I’m just not there. Plus my high school girls tell me that parents should not have Instagram. So I guess I’l steer clear for now, I’m not risking my “cool mom” status with those girls!
  • Blogging: This blog started as part of the Helping Hands site, and it was a way for me to disseminate accurate information quickly and easily. I chose to keep my Helping Hands site was private, one of the administrators had to approve anyone who wanted to be part of the community. This blog is a whole different story. I still like the idea of the control the blog gives me– there’s no reason for anyone to hear third-hand what’s going on with my health and get things entirely wrong because the story has been passed around so many times. But the more public forum of a wordpress blog, while sacrificing some privacy, helps me reach out to a much larger breast cancer community.  I hope that my story might help someone.  I hope that maybe someone will read my words and have a new perspective, a new question for her doctor, a new way to help her friend.  But it wouldn’t be honest to say that writing this blog is entirely altruistic. Writing helps me.  The people I’ve met, hearing their stories, sharing their successes, it all helps me.

We definitely have to be careful about the information that we share online and on social media.  And after talking at length about nipples, it may be a hard sell to tell you that there are things that I edit, things I keep out of this blog. I don’t share everything, but I strive for honesty in my voice. I share what I would want to know, the things I’ve looked for, coming up empty. I try to remember that anyone can see my words, my images– something that I remind those high school girls about all the time. (They’re probably tired of hearing how I nixed one potential babysitter because she was holding a red solo cup in her profile pic!)  But at the same time I worry that anyone can see my posts, I am in awe of the fact that anyone can see my posts. Anyone. Anyone who just heard her doctor tell her that she has breast cancer.  Anyone who is worried how her kids will react to her hair loss from chemo. Anyone who wonders what it’s like to get a nipple tattoo or to grow out her hair post chemo.  I do try to remember to put down my phone for a while each day and just engage with the people around me.  But I’m so thankful for the tools that connect me with so many people– with friends I know in real life, with people with whom I’ve only shared stories on a screen, with anyone.