Category: TNBC

Don’t Try To Make Me Cry

~ Jamie ~ Leave a comment

photo 3

I don’t know about you, but I’m so over the commercials for the Avon Walk. I have nothing against Avon, I think a lab I was in had some funding from them at some point. And I even did the Avon Walk back when it was the Avon 3Day, in 2002. The shirt they gave me as I finished my third day and sixtieth mile is way too big, faded, and bleach stained. Yet I still wear it.

So I have nothing against Avon or their walk. But the commercials are killing me.  I’m sure they’ve funded some good research and helped some women get mammograms. But the notion (that’s all over their commercials) that my signing up today will save the life of my just diagnosed friend bugs me more every time I hear it.  The notion that if I don’t walk, I am depriving her of the ability to see her daughter get married. Really, if she’s already diagnosed, then a mammogram or next year’s research isn’t going to make a difference for her.

I think what irritates me is the overly emotional plea. I feel like they want to make me cry, they want to manipulate me into signing up for the walk. Emotional manipulation like that just weakens the credibility of an argument.  That makes me so sad, because I think there is validity to the walk. If you want to convince me, tell me that the research will help my daughter, future generations. Tell me how many women will get a mammogram the very next year just because I walked.  But please, Avon, don’t try to make me cry.

Celebrating One Year

~ Jamie ~ 1 Comment

20140314-132323.jpg

I tend to be the kind of person who works best with incremental bench marks, little goals with little rewards.  Whether it’s running (a new piece of gear for following the first part of a training plan) or housework (can’t check email until completing an action on my to-do list), the breaks in the mundane certainly help the time pass more quickly.

And so this week, I celebrate one year cancer free.  Last year on March 13, I headed into the hospital to have any remaining cancer removed from my breast, and I came home with the assurance that there was no cancer lingering in my body.

As with other areas in my life, this one year mark is a small goal counting down to a bigger, more substantial goal.  For most women following breast cancer treatment, the five year mark is a big deal.  Statistically, if you make it to five years with no evidence of disease, you are considered cured.  Triple negative breast cancer is much nastier and more aggressive, and in general, that’s not good.  But since it’s so nasty, it tends to rear its ugly head much more quickly. So this would be one of the few times when those of us in the triple negative club can count ourselves lucky– three years is our critical time point. If it’s coming back, it’s not waiting five years. So we only have to make it three years before taking a big, deep breath– I’m a third of the way there.

Since the first half of my “first year” was consumed with surgical appointments, I didn’t spend much time tracking my progress towards the first benchmark. But the second half? That has been harder. They spend so much time telling you what to expect with chemo, how to deal with post-surgery pain and restrictions. I even went to a “survivorship” appointment, where one would expect to learn what it  means to be a breast cancer survivor.  Still, I was unprepared for how much more little aches and pains worry me, how much more I wonder if this will be my last time doing something. During treatment, I think I’d shut down my emotions so that I didn’t even consider my mortality for a second.  With the return of emotions, I’m finding that I’m dealing with things that I apparently put on the back burner a year and a half ago.

And yet, with the first benchmark in the path towards the word “cure,” I’m hopeful that I’ve dealt with the bulk of those stored up emotions, ready to emerge and find a way to be productive with all that I’ve learned and gone through.  In the coming weeks, I hope to share some more about the projects I’ve been working on lately.  A grant review session, another feature in a publication, and an online video segment… I’m not quite there yet, but I feel like after a year, I’m starting to find a way to take what can only be described as bitter irony– a PhD breast cancer researcher diagnosed with breast cancer– to make a difference to other women walking the same path.

 

What to Wear to an MRI

~ Jamie ~ Leave a comment
What to Wear | MRI

Just a few days after that dreaded call from my surgeon telling me that the cyst aspirate which was supposed to be nothing was, in fact, cancer, I went to the hospital for my very first MRI. Besides the whole cancer thing, I’m very healthy, and I’ve never had a broken bone, so I’d never even contemplated the idea of having and MRI.  I talked to the people from nuclear medicine and was sure to follow their instructions and get there plenty early, doctor’s order in hand.  My surgeon asked if I wanted her to write a script for Xanax, but since I’d never had a problem with claustrophobia, I assured her I’d be fine.

I showed up wearing my favorite white jeans and a pair of high heeled gladiator sandals.  Sally and I were going out to lunch after that, and I wanted to feel good about how I looked.  (My hair looked great, too.  I can remember so many people telling me how beautiful my hair looked. I know they were being nice.  But salt in the wound, ok, people?)

Anyway, I should have thought it through a little better.  An MRI is basically a giant magnet that they stick you into, so of course, you can’t wear jeans with all the metal rivets and zipper inside.  I put on a hospital gown and walked barefoot to the exam room.  It gets pretty cold in the exam room, so they wrapped me up like a burrito in warm flannel sheets. My husband (and probably my college roommates!) will tell you that I like it to be cold when I sleep, I’m a shorts and a tee year round kind of girl. The idea of flannel sheets that have been warmed and then tucked in all around me just makes me shudder. Ick. I don’t know why I didn’t say something from the start.  For a breast MRI, you lay on your stomach with your arms Superman style ahead of you, so the kind nurse wrapped them up, too. And it’s super loud, so they stick in ear plugs.  Then they back you into the tiny tube.  At which point I had my first major freak out.  I’m pretty sure I was hyperventilating, and this usually unflappable gal had to make the technician extract her from the tube post haste. After a few tears and many apologies, I finally convinced them that I could not go back in the tube all wrapped up like that.  So we took off nearly all the blankets (maybe every last one), I took a deep breath, said a quick but fervent prayer, and back in I went.  I did relatively well, though by the end of the nearly 40 minute exam, I started to get pretty cold, and was scared to death that my shivering was going to mess up the part when they add contrast, which is “the most critical part” for which you must lay absolutely still.  The thought of doing it all again the next day was enough to keep the shivering pretty much at bay, and I managed to get through it.

The next time I went in for an MRI, I was much more prepared.  See, if you wear stretchy pants with no metal parts and socks, you get to leave them on! If I had to go back tomorrow, (which I don’t, for the record) I’d be wearing my fave yoga pants*, a shirt that reminds me I’m strong, and some happy socks.  (I don’t own these socks, but if I have to go back in that tube, I think I deserve to be wearing a pair of socks whose brand is Happy Socks.) Dressed all casual and comfy like that, Dior Addict Lip Glow is the way to go– more of a lip balm that looks like my natural lip color, only better.

Oh, and I forgot to include one thing in the picture.  The Xanax.  If a doctor ever offers you Xanax, you go ahead and take it.  My second MRI was so much better, and I’m sure the pants and the socks helped.  But also, the Xanax.

*These pants are on sale right now, and I’m fighting the urge to stock up.  Seriously, they’re worth every penny.

New Tunes | Runnin’ Like a Mother With Spotify

~ Jamie ~ Leave a comment
mother runners
Sally and me with Sarah and Dimity, authors of Run Like a Mother, May 2012

I have to admit that I’ve heard of Spotify, but hadn’t gotten around to finding out anything about it.  I’ve had Pandora for ages, and have been happy enough with it to bother with anything new. Big. Mistake.

I adore the ladies at Run Like A Mother. (If you’re a mother runner, or have even considered taking up running, you must read their book. It will get you out the door, I promise!) Sarah works tirelessly to create special running playlists, and I’ve taken lots of her suggestions to add to my little iPod shuffle. Last week, their blog featured the 50 Best Running Songs, and provided a link to the playlist on Spotify. I headed there right away and got my own account immediately. I tried it out on my run today, and was delighted.  I could head straight to the mother runners’ playlist and shuffle through their picks.  It is definitely a diverse playlist, but it was so much fun!  Those six miles literally flew by as I anticipated the next song. A few songs were brand new to me, one started off so depressing, but seriously, hang with it.  I was literally laughing out loud as I ran down the trail.  I’m not super speedy, so six miles takes a while, and I didn’t hear one single ad, even on the free version. (I’m looking at you, Pandora.) It didn’t drain my phone, but I’m guessing you’d have to watch out for data usage if you don’t have an unlimited plan. But since I do, I’m afraid my little shuffle might not get much action anymore. I think I’ll tuck my phone into my SPIbelt (also a must have in my book– it doesn’t bounce around at all!) and head out with Spotify.

Buy One, Give One | Love Your Melon Hats

~ Jamie ~ Leave a comment

love your melon

 

Even before breast cancer was a part of my everyday life, I was uncomfortable with the “Pinkwashing” phenomenon– marketing all kinds of products in pink, promising that “a portion” of the sales will “benefit breast cancer.” And I’ve never even been tempted to buy a pair of Toms shoes, despite their philanthropic philosophy, mostly because I don’t love the shoes. (Their moccasin-style boots are starting to turn me, though…) But when I saw a feature on Love Your Melon on the Today Show this morning, I was instantly intrigued.

Two college students started the not-for-profit company as part of an entrepreneurship class at St. Thomas University in Minnesota.  They have grown that class project into a full-fledged 501(c)(3) non-profit, and each purchase of a made in the USA hat provides a hat for a child with cancer.  Cancer aside, I love their branding and the way they produce their hats– they are knitted in Oregon and the patches are sewn on, many by volunteers, in Minnesota.

But back to the cancer thing. I always had long, thick hair. I could never have imagined how much colder it is to have no hair! (Though it came in handy when I was having hot flashes…) And while everyone will tell you that you should buy whatever you want right after a cancer diagnosis because “you deserve it,” the reality is that even with good insurance, cancer is expensive. And seriously, who wants to spend lots of money on a bunch of hats just because they have to? I don’t know about other people, but I’d much rather spend my shopping time and money picking out a new lipstick or a pair of boots.

I was fortunate enough to have friends and family send me all kinds of lovely hats. There was the cancer friend who let me borrow some of her ugly chemo caps– the jersey knit hats that weren’t too pretty but were great for sleeping. A sweet friend dropped off the warmest North Face hat that has a lovely soft lining– perfect on a sensitive melon, and warm enough for all the time spent at the bus stop.  Another friend sent two stocking caps from our Alma Mater, and a St. Louis Cardinals hat, too. And then there was the Rastafarian hat complete with dreadlocks that my brother sent…

So the idea of gifting a cancer patient with a warm hat finds a soft spot in my heart. Together with the cozy look of the hats and the lovely branding, I was immediately drawn to the company.  Apparently, lots of other Today Show viewers were, too, and so their website has struggled to keep up and their inventory is shrinking. (So head on over, but be patient!) I’m really hoping that we have experienced this never-ending winter’s last gasp. But I’m still considering heading to Love Your Melon to stock up for myself and the kiddos for next year.  So many companies bill their products as “helping” raise money for a cause, but this company’s dedication to warming the heads– and hearts– of little kids with cancer while still making what looks to be a quality product strikes the perfect balance.

 

Lessons Learned | Running Through Chemo and Beyond

~ Jamie ~ 2 Comments
love where i live
Such a lovely view from last week’s impromptu run with a friend.

To be clear, I was never a runner. At least not until a few years ago.  Diagnosed at 3 years old with exercise-induced asthma, my allergist told me that if something I was doing made it hard for me to breathe, I should stop. Empowered with his stern instruction (and his handy note!) I always got out of the one mile Presidential Physical Fitness run and anything else that required me to traverse the high school track.

The decision to become a runner was more about convenience. It was a way for me to exercise that took the least amount of time away from my family. I could sneak out for a quick run and be back before Clay was out of the shower during the week, or before anyone was even awake on the weekends.  Being a not seasoned (read: slow) runner and needing to get out and back quickly, I was always a solo runner.  Just me and my iPod.

While I have a friend who swears she couldn’t possibly run without her running buddies, I never thought I’d be a social runner. But last year as Sally was training for a half marathon (the one I was supposed to run with her), she would faithfully ask me to run with her at least once a week.  We enjoyed the time together, lots of good chatting was done as we covered the miles around Old Town.  I’m sure she enjoyed the company. But there was the unspoken– we both knew that while I was on chemo, I needed the run. My body needed to stay active.  My solo runs had dwindled to almost non-existent, and I needed those weekly invitations to get me out the door. Lately, finding a day when both she and I are free, have healthy kids, and aren’t snowed in has been tough. I’ve started running with a neighborhood friend, too, which is great as we can meet up while the kids are still (supposedly) sleeping. But I was a little worried this weekend when I headed out for my first significant solo run in a while, resurrecting my favorite Sunday run.  I struggled.  To put it mildly.  I stopped every mile to stretch my very tight legs.  I finished, but I felt defeated physically and emotionally.  I wrote my new running pal, lamenting my struggles.   “I thought I’d be faster without the chatting.  I guess chatting is good for the soul.  And the legs.”

Today’s schedule had a longer solo run waiting for me. If I could have come up with an excuse, I would have embraced it for all I was worth.  I had to force myself out the door.  And would you believe it?  That first mile flew by. I wasn’t tight, I wasn’t slow (for me), and I wasn’t dying to stop and walk home.  It was the longest run I’d been on in ages, and it was so fun to be back on the trails, reminiscing about when I used to run that loop all the time. Friends I’d run into at certain points. I finished strong, relieved that I could run strong on my own. But all those chemo runs with Sally encouraged me to say yes to the intimidating invitation to run with another friend. And the miles spent chatting have taught me something important.  I may or may not be faster when I run with a friend.  But friends are good for the soul.  And the legs.

Scars, scars, go away | Scar Management after Breast Surgery

~ Jamie ~ 1 Comment

scar sheets

 

Obviously, with surgery comes scars.  I’m pretty lucky and heal really well– the part of my scars that have remained untouched since March have faded. They’re not invisible, but they’re hardly noticeable.  The scars from my swap out last fall are another story. Granted, they are newer. But I think the fact that they’re on top of the old scars (he used the outer portion of the old scars to swap in the implants– didn’t need to use the entire scar) might be making the healing a little tougher.  When I went in for a check up last month, I asked about it– they were just pinker and not quite as smooth.  Again, I know it’s not a matter of life or death.  But I love how sensitive my surgeon is to what I need, what I want.  I’m sure there are women who wouldn’t care if their scars were pink and noticeable.  He might suggest options for improvement, but I’m sure that many women would just want to be done with doctor’s visits, interventions, reminders of their cancer.  And that is perfectly fine.

Me on the other hand? I’m looking at the big picture, the long game.  I want to take the time now to do things right so that I’m not unhappy for years and years to come.  Thankfully, reconstruction is done by a cosmetic surgeon who knows not just how to do surgery, but how to make sure it looks pretty when everything is done.  He suggested I use these silicone sheets for six months (will this ever be over??) and it should help the scars fade and flatten.They’re pretty easy to wear, they just stick on top of the scar and don’t go anywhere.  I currently have two pair in rotation. When I get into the shower, I take off one set and put them on the outside of the (included) case. When I get out, I dry off and put on the clean pair from the inside of the case. Then I take a minute or two and wash off the other pair with warm water and a little soap.  I stick them on the inside of the case, use a clean towel to absorb most of the moisture, and let them dry before snapping the case shut.  They don’t bother me at all– I don’t even know they’re there.

But the real question: do they work? Well, the scientist in me knows never to introduce two new variables at the same time, you’ll never know which one is causing your reaction.  But the “just want to get on with things” part of me decided I’d rather be done with everything faster than know exactly how effective these scar sheets are.

The second suggestion my surgeon made was steroids. Ahh, the wonder drug. They gave me boundless energy and kept the nausea at bay when I was on chemo.  Apparently when injected directly into a scar, they also help it fade and shrink faster.  So in addition to the scar sheets, I’ve had my first of two rounds of steroids (mixed with a little lidocaine) injected just under the skin into my scar. I know it sounds awful, but I only barely felt it on one side, not at all (and I’m not even kidding) on the other.  There was a little bruising, but the scars really do look a lot better. I’m sure the biggest part of the improvement I can see is due to the steroids, but the silicone scar sheets really aren’t a problem, so I guess I’ll be wearing them for the next five months or so.  Every little bit, right?

Wishes for a New Year

~ Jamie ~ 2 Comments

new years card

With Emma Clare’s busy Living Christmas Tree drama schedule this year, trying to find time for a family picture for a Christmas card was nearly impossible.  Last year, Sally took such lovely photos of our family just after I’d started chemo, and my hair was long and beautiful.  But it felt a little less than genuine to send out that photo weeks after I’d shaved my head.  So the back of the card featured a quick family snap with my bald head.  I’m not much of one for a long Christmas letter, so I went with the “a picture’s worth a thousand words” philosophy and just added the address of my blog in case anyone was curious.

So the year after you send out an “I have cancer, and by the way Merry Christmas” card is not the year to skip the card because your family is too busy to take a decent photo.  But after thinking about it, I decided a New Year’s card would be perfect. I wanted to highlight “healthy” hoping that would send the “I don’t have cancer anymore” message.  But we decided the back might be the place to make the message a little clearer.  And you might as well have fun on the back of your “I don’t have cancer anymore, and also Happy New Year’s” card, right?

Lego’s First Breast Cancer Minifig?

~ Jamie ~ Leave a comment

It’s been cold and snowy here.  The kids finally headed back to school and it was as if you could hear all the parents breathe a collective sigh of relief as we put their cold little bodies on the bus yesterday morning.

But filling five consecutive days off has been a challenge. We played (briefly) outside, made fires, made chili and chocolate chip cookies, and the kids played far too much Wii and Minecraft. (For the record, they also each completed one “big” school assignment and got some more books at the library.) But thankfully, they love Legos and have played a good bit with those, too.

DSC_0005 (2)

This is currently one  of Emma Clare’s favorite characters, she is reading a book about a Japanese-American family, so is drawn to the cherry blossom tank. But she showed it to me because she thinks it looks like me.  Apparently, this is kind of what my hair looks like when I don’t spike it up fauxhawk-style.

Legos sure have come a long way since I hoarded the trees and flowers to try to give my houses at least a little bit of a woman’s touch. Now, apparently, I have my very own Lego minifig. I must be big stuff.

More on the Hair: The Fauxhawk

~ Jamie ~ 1 Comment

fauxhawk

Seems like it’s gotten a little deep here on the blog, so naturally we should head back to hair and makeup, right? I went in for a haircut last week. Now for a brief digression, I am attempting to grow out my hair.  But yes, I keep getting it cut. We’re letting the top grow out before I start letting the sides and back grow out so I don’t spend too long looking all shaggy and fuzzy.

Anyway, after he cut it last week, Dragan was starting to style my hair and mentioned that it’s probably long enough for a mohawk. “OK, let’s see it,” I quickly answered. I’m not sure he expected me to let him do it, and I really don’t think he expected me to leave with my hair all standing up like that.  But honestly, I kind of like it.

There is one big caveat with the fauxhawk, though. It turns out there is a thin line between me looking like an edgy version of me and me looking like Justin Bieber. (yikes.) And that fine line is good makeup and lipstick. Without makeup and a bold or bright lip, I end up looking an awful lot like Justin Bieber, and that’s just not ok. But I do like the hair. So bring on the hair product. But also the lipstick.

Lipstick: Buxom Full-On Lip in Havana