Category: survivor

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?

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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.

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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

Almost Ideas

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I feel like I’m on the cusp of an idea right now. Like I almost have a handle on about a hundred different ideas floating around in my head. And yet, I’m having a hard time catching one and nailing it down. Back in graduate school, I wanted to work with a breast cancer advocacy group or even a news/media group to help bridge the gap between science and people who aren’t trained scientists. Trained scientists just love us some big words, and while they become second nature to us, we forget most people have no idea what we’re talking about. (Case in point, I thought it was adorable when we were dating that Clay talked about aliquotting out food to put in the freezer. Who talks like that? Scientists.)

Academia is pretty inbred– academics beget more academics. They rarely know anything else, so they’re not much help in the way of career development if you want to bust out of that ivory tower.  I tried on my own to get in touch with some advocacy groups, to volunteer, even, and couldn’t find any interest among them for a scientist in some sort of advisory and education capacity. Discouraged, and also super pregnant, I decided to leave the lab and stay at home with my new baby. But last fall when I prepared to send Turner to kindergarten, I was already thinking about what I might be when I “grew up.” Still feeling that discouragement from all those years ago, I resigned myself to the possibility of an adjunct position teaching basic science. Boring? Yes. But at least it would be something. And then, breast cancer forced itself back into my life.

Strangely, it wasn’t long into the treatment process that I realized that if I made it through all this, I might just be getting exactly what I had wanted all those years ago. Having a PhD in breast cancer research is great, but having the experience, too? You can’t get that in a book or a lab. You have to really earn that.

And so now I have lots of “almost ideas” floating around in my head– ways I can use my education and the experience, both hard earned, to do something I’ve always wanted to do.  I want to be able to help other women facing a breast cancer diagnosis to understand their options, to understand what the next year of their life will be like, and to understand that there will likely be many more after that. Breast cancer is not an automatic death sentence, but it isn’t all pretty and pink, either.  Understanding what is happening takes a lot of the scariness out of it, and having confidence that you have made the best decisions possible about your care makes such a difference.

I’ve got a couple of little projects that I’m working on and will share here when appropriate, but I’m still working on figuring out just what I want to be when I grow up. Somehow talking (or writing!) out loud helps me crystallize my thoughts, so this may be a recurring theme until I can grab a hold of a few ideas and really work them out. A good run with a good friend helped me a clear up a couple of things this morning, so feel free to share any thoughts you have!

If I had it to do over…

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Somehow the new year and all the talk of resolutions got me to thinking about second chances, do-overs. With the advantage of hindsight, I started to think about what I wish I had done differently. Thankfully, I can’t honestly think of any “big” things I’d change. Really, only two came to mind.

First, I’d let people know that I needed them more. No, I don’t wish that I’d accepted more help, but I do hope that everyone who went to coffee with me, brought my family dinner, or took care of my kids knows that it really was a big deal to me.  I needed their help, and I was (and remain) so very grateful.

Second, I’d take more pictures.  I’m sure there are a lot of you shaking your head– more pictures?  But yes.  I realized that I don’t have any pictures with my port– it was never my goal to hide it, but it didn’t seem to show up in any pictures. And yes, it was freaky-ugly, but Turner really loved gently petting it– he is so compassionate and I think he was reacting to the pain that I felt there when it first went in.  But the pictures I really wish I had? All those coffee dates, lunches, and chemo visitors. There must be at least ten of fifteen different friends who spent mornings with me, and I would love to have taken a quick snap of myself with each of those ladies. Sure, I didn’t always look glorious. I was bald, that’s not how most women want to be remembered. But I like to think that if I had those pictures, I wouldn’t see the bald head. I would see the smiling face of a woman who is loved.

There is Only One of Me…

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one_of_me_tank_top___51548_zoom

Last year, I had a great Christmas. My parents and my brother and his family all came here to celebrate in Virginia. Thanks to a friend’s cousin, they had a lovely place to stay just a mile or two away. We laughed, exchanged gifts, went to church, and ate and ate and ate. Two days after Christmas I headed in to start the second half of my chemo treatments. And it never once occurred to me to worry that it would be my last Christmas.

This Christmas, we resumed our normal travel schedule. Surprisingly, this is the year I was more contemplative, more mindful of every little detail.  I guess after all the recipe writing at Thanksgiving, it shouldn’t surprise me. And since last Christmas, I’ve lost a sweet friend to breast cancer and watched another restart her time in the chemo chair after a recurrence. I was trying to reassure myself– thinking of the differences between my disease and theirs. To be fair, I was diagnosed at an earlier stage and had a complete pathologic response at surgery, which is a big deal. My oncologist told me as much several times over at my last appointment. My outlook is good, just because other people don’t do well doesn’t mean I won’t.

Yet no matter how intellectual I try to be, sometimes the emotional side– even though I know it’s completely irrational– creeps in. And as intellect was warring with emotion inside my mind on Christmas Eve, I remembered this tee  (no longer available, but the artwork is available here) from LilBlueBoo. Of course, I’m sure that it was meant to tell little girls that they don’t need to conform to society’s views of beauty and popularity. But in that moment, I was reminded that my story can be very different from everyone else’s. There is only one of me in all time.

Triumph of Ambivalence | My Arlington Magazine Feature

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photo 2I love having a local magazine– one that features the best shops, restaurants, and stories about neighbors. It’s not uncommon for me to see a familiar face in the pages of Arlington Magazine. What is uncommon? To see my own face on those pages. And yet, there it is, complete with my name at the byline and Sally’s with her first in-print photo credit. Subscribers already have their copies, and Autumn assures me that covet and other local shops will have copies on the newsstands sometime this week.

Regular blog readers will recognize parts of this essay, where I was privileged to share a little about my journey through breast cancer and why I’m uncomfortable with the term survivor. The editor suggested the title: “Triumph of Ambivalence,” and I have to admit that I did a little googling before I agreed. But simply defined, ambivalence refers to mixed feelings– having both positive and negative feelings about something at the same time. And yes, I suppose that describes how I feel about being called a survivor.

Emma Clare looked at it and read the deck (look- I even learned some technical publishing talk!) and asked why the term “survivor” just didn’t feel right. I explained to her that I didn’t survive breast cancer because I’m better, stronger, or more godly. I wouldn’t people to think that. “Well, you’re not.”

But she quickly recovered. “You’re more of a domestic goddess.” Guess I’ll take that.

Domestic goddess, signing out.