No Princess Fights Alone

The next morning, I turned on the computer and could hear you all cheering me on from the comments.

As I scrolled down, I could hear you, and you weren’t sad any more. You were cheering me on, and my little Lego warrior princess, and loving my sons’ insight and innocence.

And then, I clicked through, and I saw the little warrior princess looking out at me confidently from Amie’s blog. Leticia’s. Amy’s, and Jean’s, and C.Mom’s and Abby’s. Marty’s and Laurie’s and Robin’s and Stephanie’s. Kate’s. Amy’s. Mel’s, and the LFCA community. Jenny, fellow IBC survivor in New Zealand. Sue, Margaret, Sunday. Ella, Kathryn, Anne, Jennifer, Heather, Stacey, Jennifer, Annie. Bon. Heather, Joa, Aimee. Cyndi, Rebekah, and Gayle. Michelle, Nicole, Stephanie, and Ilnap and the list is growing still —

I am blessed. beyond blessed, in every dimension of my life. I have a loving family, a strong and supportive husband, the work of my dreams, and the most amazing friends, who won’t let me wallow alone. They aren’t writing me off. and so neither will I.

As I stared, unbelieving, at the screen on Saturday, my little boys came in and climbed onto my lap for a snuggle. Widget looked up and was surprised to see his little warrior princess looking back. He asked, “Why is the Lego girl on the computer, Mommy?” and I told him what you all were doing. Both boys got happier and happier as we clicked through to post after post, blog after blog, and the warrior princess stood strong on page after page.

As they laughed in delight, I couldn’t help but join in, and we giggled and laughed and we turned off the computer to go read stories together, as it was nearly time for bed.

We all slept well that night, knowing that we do not fight alone, but with an army of princesses – Lego and real-life – and their actions go beyond the badge.

For each badge posted, Amie/MammaLoves will donate $1 to Crickett’s Answer to help women in need afford lymphedema sleeves and gloves to keep their arms and hands from swelling after a mastectomy (or two). Leticia/Techsavvymama will donate $1/comment on her post. Joanne/Pumditmom will donate $1/comment on her post. Go, comment, and spread the word – there is help available for breast cancer survivors needing lymphedema sleeves… and let me know if you’ve done something to help pass along that information (just use the words “lymphedema sleeves” and include a link to Crickett’s Answer). There are boxes of class 1 sleeves already at Crickett’s Answer that need to find their way to survivors in need. Class 2 sleeves will be bought as needed.

And if you just want to feel good about humanity? Go over to Amie’s post and see the growing army of princesses.

Together we fight, as the drugs I take each morning fight and starve and cut off the cancer cells so that they can’t grow any more.

Burned, through and through

18 radiation treatments down, 17 to go.

I’ve committed to treating this part of treatment as no big deal, just part of my morning routine, but the truth is, it makes me tired. big time. I can still get out and about once a day, if I rest, but I am so tired afterwards.

My chest is turning red as well, slowly, so slowly, as if I were out in the sun on a summer day at the beach — but then I keep going back and doing it again! Every. Day.

I want to show you a picture of what it looks like inside the treatment room, and on my chest, but I’m sure I’d run into decency laws along the way, so I won’t. if you’re curious, though, here’s how it is for me.

Radiation treatments are always carefully planned and targeted so that the tumor is attacked but the lungs and heart are, mostly, spared. (You do have to watch that, though — a woman I volunteer with through the American Cancer Society’s Cancer Action Network told me yesterday about the damage to her heart she sustained during radiation, called pericarditis, that will trouble her forever.). Although some women have spot radiation, the area, in my case, is large. How large? Hmmm.

Imagine yourself standing in front of a full-length mirror. Yes, naked. Sorry about that. Put your finger on the little bone in the middle of your chest, between your ribs and under your sternum. Yep, the zyphoid process. (Don’t say I never taught you anything!). Move your hand one inch to the left. Now, take a tape measure and stretch it from this spot in the center of your chest under your breasts if you have ’em, and stretch it around under your arm and to the back. Nine inches. Make a little mark here. Sure, with Sharpie. The radiation techs dot me with Sharpie every day, so it’s probably not a carcinogen.

Then go back to that funny little bone called the ziphoid process and stretch the measuring tape up towards the neck seven inches. You probably don’t want to mark this one with a Sharpie, as it would show like mine do above the neckline of my tops.

That’s the area I get radiated each day. 9 inches by seven inches, front and center, under the armpit, and around the back.

It burns clear through.

I know this, now, because my back is red and blistering, burned as badly as my front. I was surprised by this, as it didn’t happen last time, until my radiation oncologist said, “Well, Susan, the radiation is 6 to 10 million volts.”

Oh.

So my front and back are somewhat red, with blisters on the back, and deep red crinkly skin under my armpits, which are thoroughly blasted from four different angles.

It’s not that bad, but it is something.

Any questions?

The awkwardness of swag

First, I know this is a terribly first world problem, and a first blogger world problem at that. I do realize that there are terrible things in the world today, especially on the Gulf Coast, near my hometown (oh, Ship Island, my heart hurts for you). I realize that people are sick and dying of cancer (1500 Americans a day) and other illnesses, and that we who have the luxury of blogging are the luckiest of the luckiest … but I simply must say something about swag.

Yes, swag. The “stuff we all get” at celebrity events as fancy as the Oscars and as homegrown as a blogger conference.  I get the point. I know that if companies encourage us to try their products, we’re likely to write about them, and they get huge “word of mouth” or “return on investment.” I get it. I do.  And I won’t go so far as to say I don’t like swag. I do! Who doesn’t? For me, I don’t get out much, so it’s my chance to finally try a Georgetown Cupcake, to learn about Bitdefender‘s antivirus package, or to see just how small the new iGo charger is (see what I did there? I’m not anti-swag).

But here’s the thing. I can’t carry it all. I’m starting to feel like a packhorse at these blogger meetups, and it’s counterproductive.  We have these blogger events to cement these relationships that we all have, and to make connections with each other, blogger to blogger at Momzshare, and brand to blogger, blogger to brand at events like SVMom’s D.C. Metro Brand/Blogger Symposium yesterday.  But if it really is all about relationships, then shouldn’t we be spending our time talking to each other?

Shouldn’t we be encouraged to spend our time talking to the vendors and talking with each other, making new connections or really catching up, rather than carrying around four or five big bags of stuff, which forces the conversations to the shallow end, as we ask each other how we’re holding up, or how we’ll possibly get all this home?  Shouldn’t the moms who are carrying babies, already laden down and with a body possibly stressed by nursing, not have to worry about also carrying bags of stuff?  Can’t they be full participants by simply talking, perhaps picking up a coupon or card, but not also worried about juggling the blue bag and the white bag and the red bag and the cream bag and the … well, I think you get my point.

If this sounds ungrateful (and it may), I’m sorry.  But here’s the thing.  I have a disability.  Because of all my treatment, and the giant (7 pound!) tumor I had in my breasts a few years ago, I have a great deal of trouble with my back.  I can’t open heavy doors by myself, or carry a purse that is more than 3 pounds.  I simply can’t.  If I do, my ribs pull out from behind my spine and I’m in a great deal of pain.  For days.  Those sleeves you see on my arms and hands?  Those are necessary to control my lymphedema.  If I carry more than a small purse, hang out outside in the summer, or even stand too close to a hot stove, my arms swell up like balloons, and I have to go back into lymphedema therapy.  For weeks.  So I protect my body, use push buttons for heavy doors (or wait for someone else to open them), and say no to events that I think will stress it.

I took steps to manage my disability yesterday.  I tried not to complain.  I smiled sweetly and said thank  you (as I know that marketing metrics include how many bags of swag are given away), and then walked back to a booth I had called my home base, depositing the box or bag behind a curtain, with the gracious permission of the Lawry’s seasoning folks.  But I know it wasn’t just me.  I know that other blogging mamas struggled, dumping their swag in various spots around the room, too, and it became an issue.  It became an issue for moms with babies, moms with bad backs, and moms who wanted to build relationships, without having to worry about where they left their stuff.

…

There are other events coming up, particularly at BlogHer 10, that will face the same problem, and they will decide to handle it in different ways.  Last year, the Blogalicious party organizers really made a good impression on me, as they encouraged us to talk to each other, to experience the brand (Lush), and to have a good time.  The swag wasn’t brought out until the end, as we were leaving, and it was a nice surprise.  The experience was about the experience.

In contrast, other parties had limited amounts of swag, tweeting and blogging and teasing about the fantastic swag (misnamed, if you ask me) that would be there for the first 50, 100, or 200 people, and that you better get there early to get their stuff.  What happened at these events?  People lined up early, as they were told, to get their stuff.  They stood in line instead of building solid relationships and planning partnerships around a table.  They angled to be one of the first, to get the goody bags, some of which had $500 and up of product for a select few.  Guests were encouraged in a “me first” mentality … and with predictable results.

How do we create a good atmosphere for brands without overloading the bloggers?  Not everyone will agree, but here are three suggestions to consider:  1) Bring coupons if you want us to try your product at home and write about it.  That totally worked for Trop50 and Ragu last year.  2) Put your product in the big bag that we all get at registration.  3) If you bring product to an event, and it truly is swag, stuff we all get, then let us pick it up as we’re leaving, so we can spend our time at the party building relationships.

When you make it all about swag, it becomes all about … swag.

Disclosure: All the brands mentioned in this post were sponsors of the respective parties, and sent me home with free samples of various kinds.  Oh, and my friend Jessica carried them home for me.

Three-Day Weekend: Be Careful Out There!

Dear Friends,

I know that with the latest news about sunscreen and the confusing study results, it’s tough to know what to do about that bottle of sunscreen on the shelf.  I know I’ve been confused — use it? Don’t use it? Panic? Don’t panic?  Well, my friend Catherine Morgan has just written a piece over at BlogHer summarizing the issue and the responses to it, including one just for us bloggers from the American Cancer Society.  She lays it all out for us, and I encourage you to read Catherine’s piece.

As you make your plans for Memorial Day, won’t you please remember to Slip, Slap, Slop (Slip on a shirt, slap on a hat, slop on the sunscreen) and protect yourself and your children from the sun’s harsh rays, particularly when they’re at their peak?

If it’s still too much trouble or too awkward to throw on a shirt or a coverup at the beach this weekend, please read this piece by Julie Pippert to understand the importance of skin checks.

Prevention is so much easier than treatment.  Be careful out there.

Susan