Back in the Saddle Again

I'm sorry, this one is SUPER long. I am running out of month!
Don't worry, in this house EVERY month is brain tumor and nf awareness month...

May 27


I know, as I go through our story, that it becomes almost ridiculously repetitive…statistically improbable bad stuff happens repeatedly! Stability achieved! Scary scan—rescan in 6 weeks! Stability achieved! Lather, rinse, repeat…

But you know, that right there is pretty much HOW life with NF and low grade brain tumors can be. When our doc talked to us in the very beginning about what was going on, she referred to G’s situation as a chronic illness, and it is…just a chronic illness that can take a catastrophic turn in a heartbeat.

So I apologize for the redundancy. Makes a bit more sense now why I am a tad psycho, no?

But in the fall of 2011, we had once AGAIN dodged a bullet. G was stable after growth. We always had a very hard time with these 6 weeks after scare scans…the area of concern was never SMALLER. How can we be zenlike if nothing is smaller? But weird low grade brain tumor factoid: generally you only treat if there is growth or symptoms. G’s tumor growth had stopped…and she was asymptomatic. So we waited. Twitching and increasingly neurotic, we waited.

bullet dodging day

(and that wasn’t just me. Dave was aghast at the “growth but then stopped is still ok” thing).

So 9 days after scan day, I had to run my first half marathon, that thing which had seemed like SUCH A GREAT IDEA right after the bad scan. My knees hurt, and I was TERRIFIED. But race day dawned bright and cool, and really, the entire day was one of the most empowering of my life. Don’t get me wrong, it was hard. At mile 5 I saw my girls, hugged them, got the oomph to head into Fairmont Park…mid-park an announcer saw my neon singlet and announced “NF IS IN THE HOUSE” so I cheered back at him…By about mile 8 I was like “are we EVER going to start aiming back towards Philly again?”, and by mile 9 my knees were starting to really hate me…but at mile 10 I was all “WE GOT THIS!” to anyone around me, because ANYONE can do a 5k, and that was all I had left! At mile 12 I pulled out my Team Sandy/G-foRce! keychain, clutched it in my fist, and knew that Sandra was there cheering me on and telling me not to stop…at mile 13 I saw my family, and I was overcome with emotion and sprinted to high five them…and then realized I still had .1 to go, and my legs were DONE. Oops. ;) But I made it, and I was SO PROUD OF ME.

More phobias overcome in 2 hours 17 minutes than I thought possible. And I whomped some NF while I was at it.

These races are so important. Our NF friends on the team in 2011 meant so much to us, and continue to (Kris Whalen, who told me I COULD go 13.1 miles in all one day, Trish Budlong and Steve Kendra…these people mean so much to us).

And then…back to the race of regular life.

School was so hard for G. Just so hard. And the more scares we had, oncology wise, the scarier I became. My fuse for any kind of anything towards G was at an epic low. (That, unfortunately, has not improved). I felt like moving forward became harder each time we had a yikesish scan.

But in October Genna got to meet her other favorite singer, Matthew West. He called her up on stage during his concert and sang Strong Enough and Survivor and all the songs that mean so much to her. She was glowing with delight.

Dave ran his first full marathon in Philly at the end of November, it was a logistical yikes of getting hither and yon along the race course to give him the specific hydration things he needs (we are so careful about that after his weird collapse), and of course Rosie had the stomach bug the morning of the race (my brave girl managed to walk all over Philly to help Daddy). But once again, Dave NFE’d for our girls.

And then, right after Thanksgiving, we were due to scan again. Both Genna and Rosie were due to perform in the Nutcracker through their dance studio…my girls have been blessed for years to dance at AP Motion in Flemington, where Miss Joanna always found a way for my visually impaired, galumphy, vaguely unbalanced child to feel like a dancing queen. So G was due to be an unlikely ballerina the weekend after her scan.

December 5, 2011, is our own day that will live in infamy.

This one is so hard. Five years was just not long enough. But here it is, from Caringbridge, December 5, 2011.

"we're ba-ack!"...

at CHOP.

Inpatient.

Facing chemo.

After shunt surgery scheduled for tomorrow.

Every single ounce of my being hurts right now. We knew it was bad as soon as we saw our doctor...

I just can't believe we are here again.

I can't believe 5 years has come and gone and what do we have to show for it?

Walking back onto the onco floor was like stepping into the Twilight Zone, albeit a TZ with newer beds.

G is so upset...thanks to everyone who has texted her or called her, that is literally carrying her, when she is texting or chatting she forgets...now she is watching the CMA's (that would be COUNTRY MUSIC awards? hello?), she just had a doctor ordered bath pre-surgery and I have to do some weird anti-bacterial wipe thing later. We met the anesthesia guy, I have papers about 3 different chemos to choose from (and I know of 2 or 3 others I don't have in my bag). My head is throbbing, and I am eating a salad...I know I have to eat.

I was shaking so badly today when talking to our doc...completely held it together until I had to tell G. She had left the room...

Dear God, I cannot believe we are here again. I cannot believe she will be starting chemo again. She asked if she was going to lose her hair...

As G left our house at 4:40 this morning, she was singing in a deep bass voice, "I hate scan day! I hate scan day!"...

I hate scan day too.

please pray for us, we are just so broken...and my other kids are at home, and I don't know what to do for them, and I have no work for my classes...and how will I keep working?

unprintable moment coming, or tears....

I HATE NF AND BRAIN TUMORS WITH EVERY FIBER OF MY BEING, AND I WILL NEVER UNDERSTAND WHY THIS HAPPENS TO INNOCENT CHILDREN. I just don't.

please storm heaven for my poor G...and my other kids, too...and for me & Dave as we try to pick our poison literally for G.

peace from 3 South room 21...oh my God, I cannot believe we are here...

k


We finally had met a bullet we couldn’t dodge.

At least I had packed a just in case bag. Dave didn’t.

Her surgery went well, and started early (less fasting!), and Dr. Storm was super fast, fast enough that I was terrified to see him (his response when I said “why are you here already?”…”what, am I not that good?” , which struck me as kind of an awesome answer, honestly.

Back in the beginning, in 2004, when I read the book about brain tumors all in one sitting, people said in a very late chapter that relapse is often harder than the original diagnosis. I feel this might be true, because we KNEW, we knew what chemo was like…to be back at the beginning again was crushing.  And G was so much older, she KNEW, she understood...

this is how she really felt. Sigh. :(

See, NF optic glioma tend to go dormant at puberty, the ONE good NF thing ever. Non-NF optic glioma tend to fuss about destructively much longer. G’s optic glioma were still stable. But OTHER NF brain tumors don’t have this handy rule. So the area of concern was in G’s hypothalamus and brainstem, and it was obvious and ugly and terrifying and we weren’t sure if the shunt was just clogged or if tumor had blocked it again.

Thankfully, it was just normal clogged. We were home by Wednesday.

And as I struggled to pull myself together (we had so many decisions to make, and since we had blown through three chemos already, we were at the bottom of the barrel chemos now—or, as I said on Caringbridge, “Highly craptastic choices from a melange of sucky alternatives”), G got ready to dance in the Nutcracker on Saturday, December 10.

so freaking mighty. 5 days after freaking brain surgery.

.  

That day was a miracle. G gutted it out, she was so beautiful. She was so mighty.

Ultimately, Dave and I decided (with our doc’s help) to enroll G in a Phase II clinical trial of a drug called Sorafenib, ironically a drug I had researched for plexiforms after Rosie’s diagnosis. This drug was an oral chemo, so fewer hospital trips for G and no port…quality of life was a huge issue for us, now that G was a teen she had a say in what we did, and she really didn’t want to go to CHOP a lot. But to do this chemo G had to scan again at the end of the month (literally 12/31) and then wait until we could get approvals and such…she had to be a month post surgery…

So we were given Christmas.

Hard to deck them halls and falalalala in these circumstances, but we tried. G told me about 5 times a day that she didn’t want to start chemo. I couldn’t focus on anything, our shock over starting again was so pervasive…

Realizing too that in less than 2 weeks we are starting again is kind of hitting me. I think in the first week or so of ugh we were able to kind of focus on the YIKES, we are starting…but in kind of a theoretical way, like, we’ll be going to CHOP more, what a pain. G will need a treat post each cycle, better think of that. How will I ever get lesson plans or substitutes for my classes? Oh, is chicken on sale, better stock up…in the last few days there’s been a mental shift to dear God, this is a TRIAL drug. We don’t even know if it will work, and G’s tumors are so obnoxious in the face of treatment…we failed 2 last time before one worked…her tumors could very likely GROW while we’re on this…old feelings long buried. We have been here before. We know what chemo failure is, it is NOT theoretical for G. And this drug has so little info, but once you blast through 3 options …well, the statistics on anything aren’t super great.

And we know too many NF teens who battled long and hard. Past tense. We have so many bt friends in the thick of the battle right now, and NF friends too…it’s brutal in our community right now.  Ugh.

And Genna is scared, and not sleeping well, and…sigh.

This has not been a festive week in that corner of my brain. And I know, I know we need to be hopeful, and we will get our game faces on, and we will march forward bravely into the night, but still, it’s freaking terrifying. I think some part of me hoped and secretly thought G had gotten to some magic stable place. She had been off treatment 5 years, and at least 3 of those were mostly drama free-ish. We were the hopeful story.

And maybe we still can be. I am just saying it like it is. The reality is, this is serious. Low grade brain tumors are serious, and I have TWO children with brain tumors. Both of my little girls. This is weighing on me this week. I say it here, so when I see people in real life I can speak without falling apart, I can joke about G’s mighty attitude, I can talk about shoes, or whatever, and NOT fall apart. So far so good. But truly, this is so not good.

Genna is mostly nervous about kids making fun of her (that won’t happen), missing school, feeling weak in her legs, missing school, losing her hair, missing school, etc. It’s a lot for a kid to process, and it is so not what I hoped for my daughter.

But once again, people showered us with love and kindness. We are so grateful for those people.

G’s New Year’s Eve scan was stableish,

scan day 12/31/11

we were safe to start Sorafenib, and after ridiculous delays, 18 pages of consent forms, and bopping back and forth to Philadelphia, we finally had those blasted pills in hand.

And G began her Tumor Battle 2012,  tiny pills in the morning,  tiny pills at night.

Back in the saddle again…

Lily Pads and Murky Water

May 23


One of the things about brain tumor world is that sometimes you get to do really nice things because your kid is smote.

I call these things lily pads…spots to jump on in between the yikes of LIVING with brain tumors, that murky water that threatens to swallow you... these lily pads provide a joy, a respite, a nice thing. Lily pads can also be regular nice things (ie that happen to anybody, not just bt kids). Sometimes I would have a moment, mid-happy-fest, and realize WHY we were getting whatever blessing we were receiving, and I would just have to breathe. And breathe.

We also found ourselves, 5 years into this whole business, really trying to participate more in awareness/fundraising events. We could not do this in the beginning, but by the fall of 2009, we could, and we did.

We attended the Big Apple Circus in October 2009, courtesy of the Children’s Brain Tumor Foundation, a wonderful organization that sponsors a few really spectacular events each year for brain tumor kids and their families.

From Caringbridge:

Before the show, the little girl behind us was talking to her mom. “Mom, since I have a brain tumor…when I get older, will my kids have a brain tumor?” Mom answered fast, emphatically. “No.”

And I had a moment.

Thankfully Genna didn’t ask me…she heard the little girl (and she poked me and said, “oooh  that girl has a brain tumor, too!”…yes, MOST of the kids there did, but ok). But if she did ask me…I couldn’t say no.

I couldn’t say yes, really who knows? But in that moment, I had the ol’ knock upside the head of not being able to say, “No, Genna, your kids would NEVER have a brain tumor. They will be balls of health.”.

I can’t say that.

We need a cure. I know this is a genetic thing, I know there is no quick fix. But somehow, every little loss, every moment seems fresh and raw when it hits.

That there is a big fat nf/bt lesson. Genetics are cruel, my friends, genetics are oh so cruel.

Just a week or so later, we trekked to Philly for the Race for Hope. And there, both of my girls jumped into the survivor photo…I hustled near the front to be able to get pictures.

My girls were front and center (do they ever find any other spot?), and the woman next to me asked the person next to her…”are those 2 little girls sisters? They BOTH have brain tumors? Oh my God…” and the gentleman next to her answered, starting to explain my girls’ story (he must have been a volunteer)…I tried to say “they are mine” (and yes, we had on matching shirts), but I don’t think they heard me…and then their response to our reality got really hard to be by (much aghast sorrow)…and I had That Moment of

OH MY GOD, MY CHILDREN HAVE BRAIN TUMORS.

Yes, Einstein I am not. Yes, I know WHY we were in Philly…I wish I could explain how the parental brain DOES this, but it really is unexplainable unless your brain has done it.

Telling Dave about it later, he agreed, we get used to it. We get used to the story, the yikes, the OMGMCHBT moment. How can you get used to that? It’s so utterly unacceptable…


Which ultimately is WHY we go out at 5:45 a.m. in the rain to Philadelphia to run for a cure. But still..it’s easier to focus on making t-shirts and cookies and getting rain ponchos than on the reality of why we’re doing what we do.

My daughters, both of my daughters, have brain tumors.

And while strangers (but really, just un-met friends in the common cause) were trying to control their emotions about my girls, Genna was making very weird faces (sticking her tongue out and such) and Rosie was being cute and oblivious and taking off her hat for the national anthem, etc. And I was wishing I had not opted for mascara.

I feel bad, thinking about it, those poor people realizing both of these girls have brain tumors. Dang.

And that is how it is, life with NF and brain tumors.

Rosie’s January 2010 scan showed a new area of concern. Now, 3 years later, doctors refer to this area as glioma, but they weren’t sure then. Otherwise, she was still stable enough that no treatment was required. But sigh already. Typing it like this is oh so clinical, so nonchalant. But it was a…ok, can’t type what I want to, a John Stewartism of catastrophe and expletive. But that’s what it was.

In March, 2010 G tried to do her scan unsedated, then she was just too scared, and opted to take a nap. The scan was mostly stable. Meh.

One highlight of this time was Friends of Jaclyn Day at RU Lacrosse…G got to sit on the sideline, and every girl on the team had a shirt that said Genna #1 on the back…I was so verklempt seeing this display of love, G was agog… a lily pad moment…

She still wears her shirt like that all the time.

And in April 2010, I ran with NF Endurance for the first time, at the Jersey Shore Relay.

Ok, I “ran”. I survived. I did NOT keel over dead. I did not throw up at the finish. Winning! (and I only had 4.2 miles to cover). For me, this was a huge conquering of fear, and a first step in taking back some of what I felt NF had taken from me.

I'm the one who looks SUPER FAST.
ok, lies. The lady next to me finished the Boston Marathon this year in 3:40, I think? (thank God she is fast).
Dave runs about 8 minute miles over distance.
I finished the race IN 2009, before the fourth of July. The race was in April . Winning!

Another lily pad.

Rosie made HER first communion…she couldn’t wear G’s dress…for Rosie, NF means she is super tiny, G’s size 12 communion dress was like a 8 man tent on Rosie, we had to go find her a size 6x or 7…but it was a beautiful, hopeful day…another lily pad.



hot enough for sun dresses, fresh snow on the peaks behind us.
 Our minds were Blown.

 We flew out to California and drove to Nevada for my brother’s wedding…aside from the flying part (ooooh snap), it was a glorious adventure, we had never been to that part of the country and it was astounding, amazing, and capped off with getting a wonderful new sister.  Major lily pad moment.


snowball fight, Memorial Day weekend. Them be some MOUNTAINS, those Sierra Nevada.



The next week Dave’s brother got married…then we had a dance recital…then Lake George, our annual vacation…and then scan day for both girls, July 26, 2010.

Rosie was rock solid stable.

G, not so much.

Parts were stable. The optic & brainstem portions are stable. The middle...not so much. Our doc saw us ON TIME (egads!), and spent more than 2 hours with us, going over the films. G told some jokes, did her thing, and then went to watch tv...we were on a different floor, she was ticked to not be by the playroom.

The films are not nice.

We were given the option to wait 6 weeks to make sure things are progressing, and then deal with it. So we will scan again on 9/7. Right before school starts.

Trying to hold it together until my girls go to bed...I think I scared the poor med student by joking about the horrifyingness of everything, but really, it is freaking ridiculous...a DIFFERENT spot I haven't worried about...just not good...

just done for today. Thank you for praying for us. G knows that we have to rescan in 6 weeks. She knows that part of her tumors weren't stable. We told her we will have to figure out what to do if things still look funky. We have NOT specifically said what that could mean. She told me she does not want to do chemo again...asked if she could do oral chemo if she has to restart...but that is as far as we have gone thus far.

…really, really hating on nf right now. really hating.

…thank you so much for your prayers and support, please keep them coming.



Back in the murky water again…

Need for Speed

This the text of what I said (um, read) at our Coffeehouse for a Cure to benefit the NF Endurance Team last night...sans weird ad libbing and the random "ding...dong" sound that came out of nowhere halfway through...



I am fast at a lot of things.
My students (and most of humanity) can attest to the fact that I talk really, really fast.

I can polish off a bag of Cadbury Mini-Eggs lightning fast.

Give me a word or situation and I will burst into an obscure show tune or commercial of the 80s or odd protest music from the 60s Super Fast!

I can spend $100 at Target alarmingly fast.

Make a mess in any part of my house? Fast.

Misplace my shoes? Crazy fast.

Lose my temper? Yeah, too fast.

I type uber-fast, and read crazy fast, and get through Costco on a milk/cheese/eggs
run scary fast.

So there’s a lot of things I do insanely fast. I like fast. Fast is how I roll.

But ironically, in light of what our Coffeehouse is about, there’s one thing I am embarrassingly slow at.

Running.

I am a pathetically slow runner.

Global warming happens faster than I complete a 5k. People on jazzy scooters pass me when I run. I go out for a mile jog and I have to make sure nobody sends out a search party for me when night falls and I have not returned.
I am really, really slow.

And honestly, I kind of hate running. I hate the way I look in running clothes –to quote a friend, “spandex is a privilege, not a right”, I hate the funky smell that follows any kind of running, I hate the feeling of having run 87 miles and then seeing a measly ½ mile marker. I am fluent in Whinese when it comes to running. I am REALLY fast at making up annoying little songs about running…running running is annoying/running is the thing I loathe…moving quickly getting stinky wearing stupid spandex clothes!

See?

So why the heck do I keep running? I mean, there are a lot of things in life I’ve made peace with stinking at. I simply don’t DO those things anymore, and the world is a better place. I will never be a great Ukrainian Dancer…or Scottish Dancer…or Hebrew Dancer…or Irish step Dancer—and that is truly ok. I will never be a champion in any sport that involves being outside in the cold (I like having feeling in my extremities, once I lose that things literally go downhill). I get full fast (add that to the fast list) so I will never be a competitive eater. One hotdog is fine for me. I am perfectly ok with NOT doing these things.

I’m probably NOT going to grow up to be Aretha Franklin either…that I’m less peaceful about. But I digress…

… why the heck do I keep running when I am slow, and awkward, and really have not earned the privilege of wearing spandex?

It’s pretty simple, really. In fact, it would make a great t-shirt…

I run for a reason.

I run for a lot of reasons, really. My reasons include, but are not limited to, Dave, Genna, Rosie, MJ, Emma & Amie, Gabbie & Ori & David, Maddie, Ann, Siobhan, Jennifer & Patrick, Jaxon, Meadow, Ryan, Jenna with a J, Preston, Jerry, Katsie and Carly and Genna’s new friend Tommy and Drew and Joey and Nora and our beloved Sandra.

Frankly, I think my reasons to run are better than my reasons NOT to.

Still, I am only able to run because of the NF Endurance Team…and not just because they gave me a snazzy neon singlet to wear with my ill advised spandex. Being with the team has shown me that the ability to do this is IN ME. I can do it, because the first rule of the NF Endurance Team is that we never run alone. There is a community of runners and supporters all over the country, all running for the same goal.

There’s crazy power in that.

It’s an odd thing, the NF Endurance Team. A few minutes with the families and friends and organizers of the team and you just WANT to get out and run. I can’t explain it. Even I felt that, and really, I am the Poster Gal for Sedentary is Super!

This team is just that amazing; the runners are just that inspiring; this cause is just that important; this reason to run, a cure for Neurofibromatosis, is just too compelling to ignore.

Standing on the sidelines at the Philly Rock n’ Roll ½ marathon in September, seeing over 100 runners with “NF” on their singlets running collectively for all our our loved ones…there is CRAZY power in that.

I will never be an ultramarathoner like my brother, who is once again running the Leadville 100 mile trail run in August for the Team. I may never actually get through a ½ marathon like my sister, Emily, is going to do in Seattle this spring. I may not even actually join Dave except as a cheering squad leader in Philly at the ½ in September. But my 4.5 miles at the Jersey Shore Relay are the way I can oh so slowly do something proactive for my family in the face of NF.

I may be slower than beach erosion in Point Pleasant where I’ll be running—in the broadest sense of the word-- on April 16, but I run for a reason.

You can too. Even if you are slow. Even if you hate moving fast. Even if spandex is not an inalienable right for you either. Come be slow with me. You won’t regret it.

There’s a famous quote by the runner Dean Karnazes that keeps me going when I’m training or when I’m discouraged in our long trek with NF. Run when you can; walk when you have to; crawl if you must, just never give up.

My girls face a marathon every day. Their battle with NF is involuntary and unending, and the fact is, we really don’t know what kind of roadblocks we are going to face in the future. This past year was a tough one. We faced the real prospect of restarting chemotherapy with Genna. Rosie started having hearing issues related to her tumor. To try to encapsulate the fear and despair and helplessness of the second half of 2010 in those 3 sentences is almost ludicrous. 2010 was a tough year. And in the last week alone, two of our dear friends in the NF community got really bad news…two children at a crossroads, again…
What more reason do I need to run?

So with NF Endurance I run against NF. I run for my children and my spouse and my friends and their kids. I run for a reason… and for that reason, I will Run when I can, walk when I have to, crawl if I must: but I will never give up. And I thank you for joining us in this race. Thank you.

Now the remnant of our old Smile Crew is going to sing…a song about being there for each other, a song, as always, dedicated to Sandra Blumberg, who showed us with endurance with a smile was all about….

Folly and the Secret Weapon

In mental battles with myself, I tend to lose.

Be it “don’t eat that cookie” or “really, clean the bathtub already”, or “have you ever noticed you’re shaped like a pyramid? Or a Thomas’ English muffin…’bigger on the bottom/smaller on the top’”, I invariably succumb to the battle inside.

Somehow I thought I would outgrow this. Somehow I imagined that after the Fest o’ Insecurity that was my teen/college years I would emerge as a confident, outgoing, accomplished person.

I’m not sure why I thought I would stop being ME, but I kind of hoped it would happen.

A lot of years have gone by since the Fest, and it’s hard to pinpoint whether the things I hoped to do and haven’t are because of circumstances in my life (an easy culprit), or because of Me. Most likely it’s a mix of both.

I have come to see that MOST things in life are a mix. Most things are not black/white, good/bad. Everything is complicated. Except Cadbury mini-eggs. But those can’t really be quantified as a Life Issue.

I found an old diary of mine the other day. I was a little alarmed (and kind of amused) to see the extremes of my teen years spelled out in loopy script. Some entries were funny (I refused to call my first diary a diary, it seemed pretentious, so I referred to it as Book), some were sad (my friend’s little brother died in a freak accident) and some were just …teenish (apparently I have been perfecting Neurotic over a LOT of years). But everything was passionate...even if I did see most things as all the way right, or all the way wrong.

So here, at the brink of Officially Grown Up (only one year left), I have to pick a battle and win it. I just do. Circumstances didn’t kill my passion, they just redirected it. And I am ready to go. Ish.

Maybe I didn’t choose my battle so wisely. Maybe I should have found a crafty or academic kind of mountain to climb…no, I decided on Kilimanjaro. This Saturday, I am going to run the middle section of the Jersey Shore Relay Marathon.

Granted, my great contribution is a measly 4.2 miles. A neighbor who is a hard core runner needs a training run for her next half marathon, so she will do the first 11 miles, and my spouse, also a hard core runner, will do the final 11. I figure they can both go get pedicures or something in the l-o-n-g time it will take me to get down the middle of the oceanfront race course.

It seemed like such a good idea at the time…but then my mental battle began. We only registered a week ago, and the race is SATURDAY. Like, the DAY AFTER TOMORROW!!! YIKES!

I’m not a runner. I have plaguing knee issues, and I am utterly self conscious about how I galumph along (it ain’t pretty). Especially in sports clothing, my physique is, um, Giza-like. I hate how funky you get after running (nasty). I can’t stand how you can run for what seems like an eternity and then realize you’ve gone half a mile. What is that about? I run at glacier speed…seriously, global warming happens faster than I complete a 5K. And now I know it’s supposed to be only 58 degrees and maybe raining on Saturday, which only adds to my misery.

But I do have a secret weapon against the voices in my head that form a continuous refrain of “are you NUTS???”…I have something I hope can carry me through the moments on the course when I don’t feel like I can go farther.

Genna. Rosie. Dave. Sandra. Nora. Gabbie. Drew. Joey. Ann. Siobhan. Emma. Katsie. Julia. Gigi. Arianna. Aidan. Meadow. Ryan. Jenna. Ashley.

The names are my secret weapon.
We are running as part of the NF Endurance Team. http://nfendurance.com

In training today I tried a new system, a run/walk thing that helped my knee and improved my speed by nearly 45 seconds a mile. I only used music, not tv (I run on a treadmill). And when things got hard, I spoke the names…

And you know what? Maybe I DO look like a pyramid with legs. Maybe the IT band brace does make my leg look like an albino sausage. Maybe I am uber-caucasion, sort of a slow motion White Shadow careening along like the Tin Man without his oil. Maybe I am.

So…Flipping…what?

Just say the names.

This is one mental battle I refuse to lose.

If it does rain, I will wear a silly SpongeBob hat in honor of our friend Sandy…rain or shine my girls’ faces will be on my shirt…and the names of our friends battling NF. And I will use my Secret Weapon early and often...

Just say the names.

Who knows? Maybe this little 4.2 miles will give me the boost to attempt Everest in September, the Philly Distance Run, a half marathon with hills and everything. We’ll see…anyone wanna be a running buddy?

Regardless of the future, I am determined to win this skirmish against myself…and show my girls that momma’s actions can be louder than the voices in her head.

I just can’t forget to pack myself some post-race mini-eggs…