This is beautiful.

June 26, 2010

Fred Scarf, you’re a good one.

What I like most about the CNN story I just linked to is that even though he lost his friend to cancer, 20-year-old Fred decided to take — and took — a positive step to make life better for someone else.  His words are beautiful and inspiring.  And listen to one of the cancer survivors he has helped, 15-year-old Samantha Ashburn: “I don’t know how long I have here. So I want to live it up….” 

It’s funny. Before I got cancer, I would have thought, “how sad.”  But now, I know exactly what she means.  It’s a simple fact of life.  There’s no time to waste — let’s get living!  I forget that sometimes, and get wallowed in the sadness and the anger (which is many times worse when I am tired or in pain, and this week has been awful in that respect).  But I don’t want to live that way.  I don’t want to be remembered that way.  I want to leave more behind than words of sadness.  And more importantly — I want to live my life differently, helping others, as opposed to bringing anybody down with sad words.  I’m not fishing for comments here.  I’m okay.  But I am determined to work through my own list today (my kids are off blueberry picking) and stop the sadness that comes with being so tired.  The fatigue is normal — they call it radiation fatigue for a reason — and I will gain more energy in the weeks and months after I finish treatment.  For now, I’ll do what I can and call it good.

There’s no time to waste — let’s get living!


Burned, through and through

June 14, 2010

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?


Radiation fatigue

June 10, 2010

Radiation fatigue has set in.

I know I haven’t written a lot about radiation this time around, but hey, if you ever want to know what it’s like, it’s all here.  25 posts, from start to finish, and into survivorship.

This time around, I’m coping completely differently — by not writing about it, but by finishing projects (an article in Space Policy! grantwriting! planning museum mornings with the children and Moms Club! the book!) and by trying to move beyond it.  There’s a lot going on, to be sure, and there’s an upcoming appointment for a second opinion at Sloan Kettering Cancer Center after all (HOORAY!), but I’m just trying not to focus on it.

So there.

It’s worked well to date, but as radiation fatigue set in after treatment on Monday, I’m also slowing down quite a bit.  My bed is getting used to me again, and I’ve reacquainted myself with the hammock.  Don’t know what I’ll do about the book and all, but the trees are lovely to look at this time of year, and the children have a brand new gravel pit to play construction in (SO cool — thanks, Grandpa!).

I did talk to Lynette Summerhill, who I met at BlogHer last year, about lymphedema and lymphedema therapy with Bretta Fabian for an EmpowHER article that came out today — and I’m starting to think about where I can write for breast cancer awareness month in October.  It would be nice to place a piece on the signs and symptoms of inflammatory breast cancer, wouldn’t it?


A sweet night out with friends

May 22, 2010

My second course of radiation started this week.  Every morning, I start my day with a quick stop in the radiation center for treatment, take a deep breath, and go on about my day.  It’s not quite as easy as all that, of course, but that’s the way I’m going to look at it, for as long as I can.

After a week, the left side of my chest and my armpit are tender to the touch.  I have sharpie marker stains outlining the treatment field in dashed lines, and I have a few new tattoos too (just dots, but I like to think of them as stars that are very far away).  The thick dashed lines bothered me at first (really, one day, I had red stains, black stains, blue tattoos, and yellow paint marking the treatment areas.  When they brought out the green marker, I  couldn’t decide whether I was an old-fashioned diagram for cutting up beef, or a piece of art.)

Cuts of Beef

If they bring out the barbecue sauce, I’m outta there!

I felt awkward. I felt more than awkward, really.  As the technicians pushed and pulled my body into position where the tattoos lined up exactly with the red beams (remember the security system in Ocean’s Twelve? Psych? Chuck? Dr. Who? White Collar? Ohgoodgrief, what tripe are you watching these days?  And when are they going to add a laser hallway protecting Sue Sylvester’s trophies on that other show we all watch, anyway?) — aw, heck, now I have other things to think about when they’re lining me up with the red “laser-like” beams.

Which is awesome.  It’s all about not getting bogged down in the cancer treatment these days.  Yes, cancer sucks, but I AM MORE THAN THAT.  My life is more than that.  And so, this week I was thrilled beyond belief to go out with my friends TWICE, to pitch new ideas back and forth across the table, to hug their necks and to ask about their kids, and to spend a day and a half working downtown with education and outreach professionals on NASA’s upcoming Year of the Solar System.  Really — does it get cooler than that?  (HEY! It’s cool, ok?)

Back to dinner.  The lovely Miss Jessica asked me to dinner at The Melting Pot in Gaithersburg on Tuesday, and we motored up to join our friends in the private dining room.  It was a good thing we had a room to ourselves, because if I’ve learned anything, I’ve learned that a room full of mombloggers can be ROWDY.  Oh, I kid.  We were perfectly well-behaved, if you don’t count a couple of extraneous squeals and overzealous hugs when a new friend or twelve walked in.

It was a wonderful night, gathering around the pots o’ cheese (I ate way too much fiesta cheese, but the Feng Shui melted cheese with white wine was awesomely delicious) with parenting expert and friend (lose the guilt!) Devra, Mother in Medicine KC, MamaLaw Justice Fergie (as seen in this month’s Southern Living!), and new friend (recently rediscovered?) Lindsay from RockandRollmama.  The brilliant TeachMama, techie TechSavvyMama, “it girl” Jessica, and I posed for a photo and hashed out a bit of our BlogHer ’10 session on resource blogging. We all tried the main course, cooking shrimp, beef, chicken, and veggie pasta, but we quickly agreed that if we were going to go out together?  We were much more interested in the cheese and chocolate.  Particularly since not a few of us had had to cook for our children before we left for our own dinner.  (Bygones.)

Between courses, I was thrilled to hug the neck of “Fried Apple Pies” Kristen; thoughtful Laurie Writes (who does, and who is available this summer if you need a writer); The Fabulous Miss S (who is, and I should visit her blog way more often!); Lara, who did not actually bring her Chicken Nuggets of Wisdom since dinner was being served, but who did tell me how she and Janine are starting to Bring it to Fruition; Jodifur, whose shoes I really should have noticed; neighbor and summerbuddy Stimey; and the sparkly Thien-Kim.

And then, the chocolate course.  I still have a gooey warm feeling about consuming strawberries and bananas dipped in cookies and cream dark chocolate while catching up with Janine/@Twincident and Urbanmama, although I could have easily been distracted by the brownies dipped in amaretto.  You know, since it was there and we mamas don’t like to waste  food and all.

Anyways.  This post is a shout-out to my blogging friends, who I had a lovely time with (if I didn’t mention you, please blame the chocolate), and something for me to remember:  If I lose a day (Hello, Wednesday) because I spent my spoons the night before, it’s totally worth it.

Disclosure: The Melting Pot D.C. hosted our band of mamas for dinner and dessert at no charge, with a take-home of white chocolate and spice; they’ve also set up a Girl’s Night Out package where you can enjoy exactly what we did, plus a salad I didn’t mention (because who mentions salad?), for $30/person.  Find them on Facebook.