Decision Time

In just a few hours, I’ll be heading back to the oncologist for the results of my post-radiation PET scan, chest CT, abdomen and pelvis CT, bloodwork, and the report from my radiation oncologist.  We’ll finally find out whether the surgery and radiation killed the cancer cells in my body, or if they’re gearing up for another fight.

Whether BlogHer 10 will be all sweetness and celebration for me, or not.

Whether I can move on and go shopping with my friends this weekend, or not.

Whether I will get stronger and stronger as I have been the last several weeks as the radiation effects wear off, or not.

Whether I will get the chemo pill, or go to the hospital for the chemo infusions through a port in my chest every week or three.

Whether I will …

Oh, forget it.  You know what I’m saying here.  Big day.

I almost ended up going to cover President Obama’s speech at the National Urban League Conference tomorrow morning, squeezing it in just before my appointment, but I’ll simply be too nervous and too focused on getting there, so I passed at the last minute.  Justice Stacey,  TechSavvyMama, Minky, and Amanda will do a GREAT job in the blogger pool, and I’ll just tootle on down to the hospital for my appointment.  (You can watch the speech online here at 8 a.m. EDT, or check their blogs later tomorrow.  Very cool.)

I’m expecting very good news tomorrow (what else can I expect?), but until I hear the good news from my oncologist Herself, I admit I’ll still be a little nervous.

A little.

This week was a good one.  I spent a few days up at my mom and dad’s house with the kids, helping them have a good ol’ fashioned small town summer, complete with a trip to the fair.  We petted pigs, stood nottooclose to the cow wash, heard the goats complain about their pens, and watched the sheep look at us funny with those little tufts left on top of their heads.  And then, Iamnotmakingthisup, we watched a goat show.  The 4-H kids were showing the young goats they had raised, and the judge was calling out the results and the rationales at the end of each round like an auction caller. 

The children were fascinated.

And then, they climbed on the tractors.  All of them.  All sixteen hundred of them, as far as I could tell, as they test-drove-in-place machine after machine as if they were making a purchase, my little city boys.

We had a lovely time.

If I were Stimey, this post would be filled with pictures (and humor).

I’m not.  It’s not.  I’m just a little nervous about tomorrow.

Decision time.

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When I woke up

When I woke up this morning, I forgot I was sick.

I rolled slowly out of bed and caught up with my little ones on the stairs.

I made them oatmeal, raspberries, and cheerios, being careful to pour their “mulk” into square glasses as requested (daily).

We ate cheerily and talked about the day. We loaded the dishwasher and went upstairs to get dressed. Halfway up the stairs, I heard myself panting, felt myself slow down, and then stopped, almost too tired to haul myself all the way up. The kids hopped in the shower, but I?

I passed the kids off to C and went back to bed, tired beyond all reasoning, and lay there, so tired, not wanting to move.

Hours later, I got up again, this time walking carefully to my office in the room next door. I wrote for an hour, making nice progress on the revisions for Chapter 6, and then allowed myself to be distracted by the children’s laughter as they told me all about their adventures and carried me away with their dreams.

We took a new puzzle to the big bed and busied ourselves with putting it together, just us. Quiet. Happy. Enjoying each other on these terms.

And it was almost as if I had chosen this quiet life, cuddled with my children, reading story after story, and talking about the day as we did puzzles together.

For a moment, again, I almost forgot I was sick.

I am DONE with Radiation!

Whoo-hoo! 

I am DONE with radiation treatments, friends, and I am SO HAPPY about that!

I’ve really slowed down the last couple of weeks.  I’ve just accepted it for the most part, treating life as if we were on a beach vacation where it rained the whole time — slowing down, playing legos with the kids and cards with the grandparents, sitting in my recliner doing puzzles or keeping up with the news magazines, and writing my NASA book.  I have gotten quite a bit done on the book for being in treatment, actually — 135 pages, a whole chapter, started and finished since my surgery!  I put it aside as less of a priority (sorry, scientists) than holding, reassuring, and being there for my children during the times that I am awake, but I keep coming back to it.  Work is an irresistable call for me, a siren beckoning me to use my brain, and it gives me energy and fulfillment to hole up in my office and write after the chidren have gone to sleep.

I was also able to get out twice this week, once to visit the new Fire Station One restaurant in Silver Spring (ohmygosh that was fun! Thanks, Jessica, for the tip!) and once with the grandparents driving, to take the children to their VERY FIRST MOVIE ever, Horton Hears a Who! (reviewed at Common Sense Media by our favorite reviewer, UrbanMama!)  The special children’s showing had lights on and sound turned down (after I reminded the manager, ahem, that the loud and scary previews were scaring the bejebus out of the children), and it was the perfect introduction to the movie theater for 3.5 year old Little Bear and almost 6 year old Widget!  Plus, booster seats!  Theaters have come a long way, apparently —

It is so easy to blog weekly activities when there aren’t many!  🙂  I kid, I kid.  We also went to a friend’s house this morning.  She picked us up and we had a quiet hour playing and catching up.  And then I came home and slept for five hours.

You play some, you sleep some. 

But when radiation is OVER, you CELEBRATE!

Note: The next two weeks will still be hard on me, as irradiating cells actually doesn’t kill them at once — it disrupts their life cycle such that at the end of cell lifetime, cells die instead of dividing.  Even though I didn’t have treatment today (HURRAY!) my skin is actually getting redder, and I’m still whupped.  But each day, that will get better, and better, and, my radiation oncologist told me yesterday, I should get up to 70% of my energy back by BlogHer!   Amazing.  Maybe I should have registered for the parties!

Radiation Energy

Surprisingly, being zapped with 10 million volts of photon radiation each morning does not increase a person’s energy level AT ALL.

Radiation makes you tired. It makes me tired. So tired that last Friday after treatment I just sat outside the radiation center, catching my breath and gathering my energy so that I could drive home.

For nearly an hour.

It scared me. It scared people who care about me too, and now I’m not driving myself to radiation anymore, and I’ve moved the remaining treatments to the afternoon.

Luckily, there are only FOUR more treatments to go. THREE more by the time you read this, actually, as I’m typing on my iphone in the waiting room. Moving to the afternoon has given me my mornings back, a gift, although I’m more and more tired each day, as the effects of treatment are cumulative.

SO cumulative, in fact, that the nurses say that the radiation actually continues working for TWO WEEKS after the treatments end!

So I’ll be tired. I’ll be home. I’d love to see you if you find yourself nearby (and we’ve met before!). But you’ll need to call first in case I’m napping — on Monday, I slept for 14 hours straight!

Wild.

This is beautiful.

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

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

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?