Something New

I’ve been working on an overhaul of the blog this weekend.  It may still be a work in progress for a bit, but it will now be located at runlipstickchemo.com.  This blogger address will no longer be updated, so please stop over to the new site.  If you receive email updates, I think you’ll need to re-sign up at the new website.  Many apologies…  Hopefully it will be a little more streamlined and easier to use.

Just Me

Before we headed out on our photo shoot a couple of weeks ago, I was looking around on pinterest for some things to put on my Run Lipstick Chemo pinboard.  I stumbled across some photos of a woman photographed just after she finished chemo.  She was wearing a plain grey t-shirt and looked so casual and contemplative in the pictures.  They were lovely.  So instead of showing up for pictures in one of the lovely silk blouses I’d chosen originally (which of course, we did photograph eventually), I showed up in a plain grey tank top and my favorite yoga pants.  I’d have never thought of being photographed in something so plain, but it turns out, I really loved the way all these pictures turned out.  It was so hard to only show a few.

The other thing that surprised me about these photos—I’m not at all self-conscious of how I look, despite the fact that I was not even all the way through the first stage of reconstruction.  It’s a long process, but I have to say that my surgeon is not only very compassionate, but wants to make sure that I’m pleased with how I look every step of the way.  He made it very clear from our first meeting that he didn’t want me to feel like this was how I had to look because I had breast cancer, or even that I looked “good enough” for having had cancer.  He wanted me to be happy with how I looked.  Period.

In those pictures I saw on pinterest, the woman still had her port in.  Why didn’t I have any pictures of my port?  I can’t believe it!  I told Sally that I didn’t want her to photoshop out my port scar, even still, you really can hardly see it in most of the pictures.  Thankfully, it’s pretty prominent in one of my favorite shots.  I like that I don’t have on fancy clothes or statement jewelry.  These pictures are just me, scars and all.  And that’s not good enough.  It’s just good.

Photography by Sally Brewer Photography

Lipstick: Dior Addict Lip Glow

Bracelet: Choose Joy by lilblueboo

Kids | From the Pen of a Third Grader

I mentioned that I’m a little squeamish about using the term “survivor” and have a bit of a knee-jerk reaction to seeing the pink ribbon plastered all over.  Turns out my precious third grader has adopted the symbol as her own, and even she identifies with the term “breast cancer survivor.”  From the day I told her, I’ve found pink ribbons drawn all over the place, and I’ve had to work hard to convince her she doesn’t need a leotard emblazoned with pink crystals in the shape of a ribbon.  I think I only won that one because she can’t buy it on her own!  But seeing these notes she left me on my sewing machine (where she leaves most of my notes) is making me think about the term survivor again.  While I nearly wince to have to call myself a survivor, maybe it’s important for her that I do.  Maybe I’ll reconsider…

Missing Cancer | Naps

While I was on chemo, and for quite a while after, I took a nap just about every single day.  I’d skip a day here or there, but for the most part, I napped for two or three hours every afternoon.  Sometimes that put a bit of a damper on my fun, I once turned down a lunch invitation to District Taco just to be sure I had time for my nap!  I usually had company when I was at the hospital, but occasionally I’d sneak in a nap there, too.  My best hospital nap was probably just after this picture was taken, I was in this super teensy room while I waited to get appropriately radioactive for my PET scan.  The recliner I was in touched one wall when it was reclined, and my feet were touching the other wall.  I can see some people finding it claustrophobic, but it was huge compared to the tube they stuck me in moments later!

I’m missing my naps now, though.  There’s something so luxurious about using a nap as a perfectly acceptable excuse to do nothing.  Now I’m back to weekends-only naps, and last weekend was too busy, so it’s been a LONG time since I’ve had a nap.  Those were the good old days!

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.

Love me, love my friends

All during my cancer treatments, I was so fortunate.  I didn’t have an unmet need.  Friends would literally fight over the opportunity to bring us meals.  Sally would post meal delivery dates, and usually within minutes, all the slots would be filled.  Friends watched my kids so that I could go to appointments or even just take a nap.  Cupcakes showed up at my door.  So did hats, jewelry, magazines, books…  We were so well taken care of at my house, I couldn’t have asked for more.

Sadly, I didn’t realize until a little late in the process that there was something more I should have asked for.  I should have asked for help for those who were doing so much to help me.  Clay is the obvious caregiver, but he was pretty well taken care of, too.  (I sometimes wonder if he misses all the yummy meals and treats people would bring us, now that it’s back to me doing all the cooking!)  But there were others who cared for me who weren’t as obvious.  Luckily, Sally’s husband was able to arrange his schedule so she only had to get a sitter a couple of times to come along to chemo.  But frequently she would spend the day with me, and as I returned to find dinner ready and waiting for me, she would drive the 45 minutes home and stop at the store to get what she needed to make dinner for her family.  My mom, many hours away, didn’t spend her whole day caring for me only to have to cook dinner.  Instead, she would spend my chemo days worrying—despite all my best efforts to convince her that it wasn’t so bad. Please don’t think I’m complaining.  (In fact, I think Sally would probably kill me if she thought I was soliciting meals for her!)  Lots of people thought of my friends and family!  A neighborhood friend watched Sally’s little one while I was in the hospital so she could stop by to visit.  Several friends showed up at the hospital to bring Clay lunch, snacks, and magazines to fill the day when I was in surgery.  A friend’s cousin (who I’ve only met a couple of times!) offered her home for my family to use when they visited us over Christmas.  A good friend of my mom met her for a special lunch while Sally and I celebrated at my last chemo treatment!

I’m definitely more in tune now to see the needs of a fellow cancer patient.  I know the things that people did for me that really touched me, perhaps I’ll share some of those some day.  But I think one thing that I really learned is that it’s the best friend, the mom, the sister who is the unsung hero.  She needs support, too.  The challenge I give myself is the same one I hope you’ll take on as your own.  Of course, if I have a friend going through something like this, I’ll make her dinner, take her kids, go with her to as many appointments as often as  she needs.  But I’ll also offer to watch her best friend’s kids.  And the next time I see a friend whose good friend is going through a tough time, I’ll do what I can to make it easy for her to be there for her friend.  Sally would never have asked, but a meal or a sitter would have made her life easier.  My mom didn’t need a sitter, but loved the distraction of a lunch date or shopping adventure on my chemo days.  It gives a whole new meaning to the phrase, “Love me, love my friends.”

Running from Fear

Saturday a woman was attacked near one of my favorite running spots.  Thankfully, she wasn’t seriously hurt.  But the attacker took something from her.  I can’t imagine how long she will struggle to go running by herself again.  It turns out, the attacker took something from me, too.  He stole my favorite run of the week.  There’s something that I really love about my Sunday morning runs.  I can get up as early as I want to go as far as I want before hopping in the shower to get ready for church.  I don’t have to worry about being in the way while Clay gets ready, and I don’t have to worry about getting the kids to the bus stop.  Everything is quiet on Sunday mornings.  My house, the streets, the trail.  I’ve seen deer, foxes, bunches of bunnies, and the occasional cyclist.  There is one older gentleman who runs every Sunday morning, too, and no matter how far I’ve run, we always pass at just about the same spot, when I’m about to get off the trail, to head through the neighborhood back to my house. He was there every Sunday morning when that was my weekly 6 mile run as I prepared for a race a year and a half ago, and as my mileage dropped after that race, I’d still pass him in the same area.  Last Sunday, I only managed to run two miles, but they were strong, and it was so reassuring to pass him again.  I imagine he’s been there every Sunday morning the past few months, when chemo and surgery managed to convince me to forgo my favorite run.  I wonder what he thought as we passed last week—did he ever even notice that we used to pass every week?  Did he notice that it had been a while?

Did he notice that I wasn’t there this Sunday morning?  That attacker took my favorite run from me this week.  Instead of heading to the familiar peace of the trail yesterday morning, I decided to stick to the neighborhood roads. Man, my neighborhood is hilly!  Even though it was daylight, I took my flashlight, which I affectionately call my face shredder, just to be extra safe.  (A friend in law enforcement suggested I get one—his best bet for personal security.) Really, I should be so thankful that I have such a nice place to run—lovely homes, well cared for sidewalks, friendly neighbors.  But still, my ability to make my own choice was taken from me, and that made me angry.  When I was running during chemo, I used to imagine what I’d say if someone approached me while running, made me feel threatened.  (I should say that I run in a very safe place, but still the mind wanders…)  I used to imagine how empowering it would be to rip off my hat and tell someone that I was on chemo—stronger than cancer, stronger than them.  And if that didn’t work, I’d threaten to spit on them—the chemo nurse made sure that we knew that our saliva was toxic for a day or two after treatment!  Yesterday as I ran, I was thinking how mad I was to have made it this far, past cancer, past chemo, past surgery, only to have my run thwarted because my safety was threatened.

Last night, I finally managed to figure out from some small news items that the place the woman was attacked wasn’t actually on my trail.  There is a whole series of trails around us, and the one she was on was more isolated and close to a road to allow an attacker to flee. I wasn’t going to stay away forever, but I guess that means I’ll head back out on the trails for my very next run.  I’ve never been one to let fear rule the choices I make, but perhaps I’ll start taking my face shredder, even when it’s not dark.  And while I’m sure it’s probably the wise decision, feeling it in my hand will only remind me of why I need it, and that just makes me a little bit sad.  But if I’ve learned anything in the last year, it’s that I’m stronger than fear, and so I’ll keep on running.

Little Rewards

I’m a big fan of rewarding myself—I’ll frequently set little goals with little rewards for completion.  When I was trying to get into the habit of running, I didn’t really have any running gear, so my first real running clothes weren’t purchased until I’d run three times a week for six weeks straight.  Things like weekly mileage or a longer “long run” earned me more. A couple of weeks before my surgery, Sally and I stopped in Zoe Boutique after our run.  Our friend, Susan, owns the shop, and we’ve become friends with the manager, Tara, too, so we love stopping in anytime we’re in the neighborhood.  They were getting ready for the annual Old Town Warehouse Sale, and looking through the racks they were preparing to take along, I saw it.  My mastectomy reward.

One of the lesser know “perks” of reconstruction is the ability to wear backless or sheer-backed tops without worrying about pesky straps.  I would never have considered this lovely blue Alice and Trixie top before, but I decided to try it on.  I loved it, and I bought it.  Because I could.  I was excited to wear it last week when Sally took some photos of me, and since we were using Zoe Boutique as our “home base” while we took pictures around Old Town, we decided to do a few outside our favorite old town shop!

Photography by Sally Brewer Photography

Lipstick: Funny Face by Nars

Kids | From the pen of a kindergartener

I love getting all the pictures and journals from the kids at the end of the year.  This is some of Turner’s writing from the fall.  It breaks my heart that he was sad.  I am so thankful for a teacher who saw his sadness and asked him to draw what made him feel better.  And in true Turner fashion, my cancer takes on the form of an epic battle: “The medicine is fighting the cancer.”  I’m so glad that the medicine won this epic battle.

Missing Cancer | Cupcakes

I arrived home from my first trip to chemo back in November to a super yummy surprise—cupcakes from a local favorite, Bakeshop.  During my cancer treatment, my friends overwhelmed me with “little happies” as my friend, Lucy, would say.  Lots of cupcakes, cookies, favorite candy, my new favorite salted caramel gelato…  Sometimes they’d come as a dessert with dinner, but lots of times, they just showed up on my front porch!  I know we all have images of that woman going through chemo treatment who is waif-like thin from being so sick.  It turns out now, most breast cancer patients actually gain weight.  The anti-nausea meds make it easier to eat, and the steroids even increase appetite.  I have to say, with all the cupcakes and other yummy treats that appeared at my house, it’s lucky that I weighed the same when I finished chemo as when I started!  But they were so yummy, I would have been ok to have a few extra pounds to lose before summer!  Many thanks to all the friends who brightened my day with a sweet “happy!”

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.

Three Negatives Don’t Make a Positive

There are days that will live in infamy, everyone knows what happened that day, where they were.  December 7, 1941.  November 22, 1963.  September 11, 2001.  And for me, Friday, October 5, 2013.  A few days before I’d seen a breast surgeon, she was so sure that the cyst she’d aspirated was not anything to worry about that I really wasn’t even thinking about her call.  In retrospect, I think I was very lucky those few days—I felt none of the anxiety that so many women feel waiting for pathology results.  To be sure, I wanted the fluid sent to pathology, but I wasn’t any more concerned than my surgeon.  Early the morning of the fifth, I got up and headed to the hospital for an umbilical hernia repair to make pretty again the belly button ravaged by pregnancy, having totally forgotten about the pending pathology report.  The procedure was quick and easy, and I was home sleeping off the meds by noon.  I woke to a voicemail from my breast surgeon, telling me that her office would be scheduling me some follow up procedures on Tuesday (Monday was a holiday)—a comprehensive mammogram and an MRI, and that she’d call me back when she was out of her afternoon meeting.  Admittedly, those next few hours were pretty anxiety filled.  I was super sleepy from my meds and sore on top of that, but didn’t want to go to sleep and not be able to talk to my surgeon when she called back.  When I finally talked to her, she told me that the pathology revealed an “abnormality,” and I think she wanted to leave it at that until I would see her the following Wednesday.  We had chatted in her office briefly, but she didn’t know my background.  Not quite on the level of Reece Witherspoon and the “do you KNOW who I am?” scene, I gave her a thirty second review of my background and asked her to please explain to me the nature the this “abnormality.”  (I think I’ll forever dislike that word.)  It was like she was the teacher from Charlie Brown.  “Wah-wah-wah-wah…” I had to ask her to repeat herself.  Invasive ductal carcinoma.  I caught my breath and then asked for the ER/PR/HER2 status.  ER: negative, PR: negative, HER2: negative.  Triple negative.  Another deep breath.

Now it’s time for me to don my scientist cap for a moment.  (Feel free to skip this paragraph if thinking about science makes your head hurt!) Most normal adult tissue doesn’t grow much, and when it does, the cells have specific ways of knowing when they should grow and when they should stop growing.  Cancer  cells have figured out ways to exploit or circumvent these normal controls.  Receptors on a cell’s surface are one way a cell is alerted to grow, and having far too many of these receptors can allow it to grow uncontrollably.  In breast cancer, the estrogen receptor (ER) can be over expressed leading to expression of the progesterone receptor (PR) and ultimately, uncontrolled cell growth.  A cell with too much ER tells the pathologist that the cell is using estrogen to grow. Even if the pathologist doesn’t see too much ER,  the small amount present could be very active and make a lot of PR, so again, this indicates that the cell is using estrogen signaling to grow.  Tumors that are ER and/or PR positive are considered hormone dependent.  As a class, these tumors tend to be less aggressive and can frequently be treated with good results using Tamoxifen, which blocks estrogen signaling in the breast.  HER2 is another growth factor receptor, and tumors overexpressing HER2 respond well to treatment with Herceptin which specifically targets that receptor. 

And then there’s me.  Triple negative.  There is no specifically targeted therapy for triple negative cancer.  Astute followers of this blog may notice that I haven’t discussed my receptor status here before, even though it was the first question I had for the surgeon.  Put simply: triple negative is bad.  From the instant she said those words, I knew.  Chemo, probably AC followed by T.  Then a double mastectomy.  Then probably radiation.  I allowed my brain to think no further into the future than that.  Triple negative cancer is, as a class, much more serious—treatment is more aggressive and long term survival isn’t as good.  Thankfully, a PET scan a week later showed that I didn’t likely have any nodal involvement—all the cancer was contained in the breast—and that’s very good news.  My doctor was so encouraging.  I can remember her telling me that triple negative was really bad, but when caught early (like mine) it is very treatable.  She told me it would be a rough year, and then it would be over.  And so for those who care about me, those who are inclined to look things up online (yes, that includes you, mom!), I kept those words to myself.  I’ll write later about my thoughts on looking for medical information online, but in general, it’s best not to.  I didn’t want people reading all kinds of horror stories and thinking they would become my story.

In the past few weeks, in preparation for meeting with the Georgetown advocacy group, I’ve started looking into the current trends in breast cancer research, and I’ve found that triple negative breast cancer (TNBC) is a big area of research.  I’ve learned all kinds of things that I still think I might rather not know, at least not now.  It’s not that I believe that ignorance is bliss, but there is such a thing as having too much information.  I’m not sure I was ready to read everything I did.  But if you’re tempted (and I repeat, please don’t be!), I did find one report that spoke to my case specifically and was very encouraging.  It looked at cases of women who received chemo before surgery like me (called neoadjuvant chemotherapy).  Those who had no cancer cells remaining at the time of surgery, who had a complete pathological response, like me, had much improved long term survival.  I’m in good company in the shadow of what could have been a very bad situation.

And so October 5 will be a day, though probably not marked on my calendar, that will be forever marked on my mind.  Maybe I’ll mark it on my calendar after all.  I’m looking forward to being able to celebrate on that day for many, many years to come.