News from Clusterfook

February 27, 2009

A year ago, I introduced some of you to my blogfriend Lisa, from Clusterfook.  We’ve never met in person, but we’ve been writing together for months over at the Mothers With Cancer site.  She has always been upfront and honest, hardworking and persistent, and dedicated to preparing her children for life, both with good memories of this time and lessons that they will take with them forever.  Her time is near, now, and she has posted her last tweet, email, and full blog post.  A friend is updating her blog this week at least and will keep the site up as an archive of her.  Of her life.  But today, I want to send this message out into the ether, where maybe she can feel it reverberate, just a bit, since she is mostly overwhelmed by the pain and drugs at the last, waiting, for the last minute of her life.

Lisa, we love you.  Go in peace.

Edited to add: Lisa’s gone.


Access

February 26, 2009

Things had been going so well. I’m in remission, my kids are happy, and I was out of the house today, doing the work I love. Things went great, all day … until I walked into a building downtown and was verbally accosted.

I try not to let it affect me, but, let’s face it, I have a physical disability. It’s called lymphedema, and when my arm and core swell, I have to start treatment again. I go in for daily physical therapy and walk out wearing a giant wrap on my arm that takes 8 bandages, rolls of gauze, sheets of cotton, and several pieces of compressible foam to apply constant pressure on my arm, hand, and fingers, reducing the swelling, eventually, to a manageable size. I can’t grip a thing, including my mouse, which makes typing darn difficult. But the problem here wasn’t with my work. It wasn’t with my typing. It wasn’t even about feeling self conscious anymore.

It was about access. Pure and simple. Because when I walked in the building at 500 E Street S.W., the security guard stopped me, saying, “I told you before. You can’t use that door.”

“What?” First of all, this is the first I’m hearing this. Second of all, why not?

“You have to come in the middle doors,” he admonished me. “You can’t come in that door.”

“I don’t understand. That’s the handicap door,” I said, baffled.

“I can’t open the regular doors.” I said.

“I have a handicap.” I said.

He just stared ahead and continued taking me to task.

As I cleared the metal detector, I gathered my courage and spoke up, addresssing both security guards this time. “They’re handicap doors. I have a handicap.”

No response. I went upstairs and dropped off some files, and came back down. I was spitting mad. It threatened to ruin my trip home. But I thought about what my blogfriend Liz would say about this, and I decided to stand my ground.

I asked to see his supervisor.

I waited.

I waited.

I waited, having a difficult time standing in the stone foyer.

After 20 minutes, the security chief appeared. I told him what happened. I told him that I have a handicap. I have had cancer, and I don’t have much strength in my arms and back to pull heavy doors like that open anymore. I pointed to the sign on the door that said “For emergency and handicap use only.” I mentioned that I have a handicap.

Those doors are there for a reason. And you know what? People with disabilities shouldn’t have to go around proving it before they’re allowed to use reasonable accomodations.

Why did I have to tell this stranger that I have had cancer? Why did I have to admit out loud, “I have a handicap,’” in order to be able to enter the building and do my work? I don’t know. But I think it begins with ignorance.

Friends, if someone is using disability accomodations, and you’re not sure they should, please consider the fact that not all disabilities are visible, and that they are not constant over a person’s lifetime either.

Just two years ago, I was healthy.  Just like you.


Twitter dressed me today

February 25, 2009

Last year, I tweeted my surgery. Sometimes, I’d tweet my chemo or check in just before radiation. Lots of times I’d twitter just for some company while I recovered from a harsh treatment.

But Monday? A new low in twithistory. Staring at this big giant wrapped arm of mine and a big meeting at NASA the next day, I tweeted and blogged my dilemma, saying,

FASHION EMERGENCY. Seriously … help me get dressed, please? http://tinyurl.com/awdcn2

Now, normally, I just torture my husband with last minute wardrobe changes, but I was so out of my depth here with this big arm that I thought I’d ask around. You guys came through in a big way! Here is the result: Tailored pants, simple top, big necklace, and a brown sweater wrap over it all. [The sweater was perfect until I hot flashed all the way through the meeting. Then I looked like this.]

wrap

Oh yeah. That necklace totally distracts the eye from the arm wrap!


Three more

February 23, 2009

I don’t need ten today. Just three things to share with you, and to rejoice over. Oh, and a question.

1. CLEAN SCANS. My PET/CT and CT scans, top of my head to bottom of my thighs, came back CLEAN. No cancer. No cancer. NO CANCER anywhere!

2. The little boys are getting better, finally over this dreadful fever/vomiting/coughing thing that’s been going around.

3. I saw my new Lymphedema PT/OT today. She says that with daily therapy and wraps for the next 3 weeks, the swelling in my arm may return to normal! Hurrah!

Which brings us to the question. I have to get all dressed up fancy tomorrow for a NASA review. At the risk of sounding shallow, WHAT am I going to wear? The wrap (bandages, gauze, and foam) adds a good 5 inches to my arm and none of my winter clothes fit! Here’s a visual … ideas? What do grown-up women with full arm casts wear to the office?

Whymommy, wrapped

Whymommy, wrapped


Ten more

February 21, 2009

Challenge: come up with ten more positive notes for the weekend.

These are the things that make me happy.

I was able to write.  Really write.  All day, while my husband played with the kids;

Completed some NASA reviews that have been hanging over my head, undone, for too long;

The bills are paid, the paperwork is done, the receipts are filed;

The Women in Planetary Science blog and twitter have been updated;

Stimey is feeling better; Canape had her first kiss;

Jessica’s campaign to help St. Jude is still making me feel all squiggly inside;

I’m thinking about going to Kennedy Space Center to view a launch next month;

My first lymphedema therapy session starts on Monday.  The evaluation went really well, and she says that she can help.  Today, my upper arm is swollen 4 cm; my hand and fingers greater than 15%.  We’ll see if she can bring them back to normal before my March conference.  No, wait, I am confident that she can;

Working in my beautiful new office is a joy.  It’s mine, all mine, and it’s where I can don my secret identity as a NASA researcher, unburdened by things like diaper duty; and

Coming out of the office at last to hug my wonderful husband and children, returning to Mom.


Ten things

February 21, 2009

Ten things that made me happy today:

Hearing my children’s laughter;

Hearing the silence as they work to figure out how to attach the crane to the dump truck, or a piece of yarn to the helicopter, or whatever else is needed for today’s play;

Eating breakfast, lunch, and dinner with them, as I love to do;

Soothing Little Bear because he (accidentally) spilled his milk, because he gave up the sippy cup months ago;

Planting seeds, and checking on the hyacinth bulb that is growing roots(!) and green shoots already in our little vase;

Planting the seeds of inquiry in their little brains, asking them where the roots come from, and helping them figure it out;

Reading a new book to them at naptime (Magic Treehouse – book 11, I think);

Reading a new one for me (Annie’s Box) while they cuddle and fall asleep;

Hearing my boys negotiate over the Geotrax trains (both of them! talking!);

Hearing them say, “G’night, mom,” as they throw their big boy arms around my neck.

And a bonus one — my friend Jessica has told us “how to help” and take action in response to the news of baby Vivi’s loss, and baby Gwendolyn’s fight.  St. Jude’s Children’s Hospital.  I don’t know why I didn’t think about it before.  Did you know that St. Jude provides free care for every child with cancer in America?  They work with insurance companies and fund the rest through donations.  I was blown away by that.  I mean, I remember the TV ads about it, but I’m ashamed to admit I’d never made a donation to help.  Until now.  Thanks, Jessica, for the reminder.  I’m so proud to be your friend.


Changing gears

February 19, 2009

There are moments of joy, even now, even while I work to strengthen my body and recover from all of this, while waiting for test results that could change my life.  They come more often the further I am from the oncologists’ office, the place where it all comes rushing back to me, where I sit among patients and former patients alike, all wondering if today will be the day that we hear good news … or bad.

I’m trying to shift focus, both here and in my life, but I am struggling a bit.  I don’t mind admitting it. It feels shameful, but I know in my heart it’s not.  But it is selfish.  It is selfish to waste time feeling sad about what may come when I still have healthy days now.

So, back to work. Back to writing my book for NASA, back to raising and mentoring my beautiful children, and back to trying to be a good friend and wife.  I’ll get there, and this virtual space won’t be so gloomy.  It just may take a while.