Zen on the Run

Back in 2004, when we were making weekly trips to Philadelphia, leaving our house in the cold and dark of early morning, I remember looking out the window of the car as we drove past the Delaware near Lambertville, and seeing the people running along the canal towpath.  Running and running. I so wanted to run, just run away from the nightmare we were living in—something about the act of physically running seemed so cathartic.

But I hate running, and back then I had a 6 year old fighting brain tumors and a 2 year old who wanted Mommy extra since things were so disrupted in our home and a 9 year old who was imploding.

Running wasn’t going to happen.

(I marvel at moms of young kids who get out there and run. If I got out for a walk when my kids were young I counted the day a major win and started imagining Olympic Glory as a walker).

Still, some part of my brain understood that there was freedom in movement, in running along near a river.

In 2006, one of the lowest points of my daughter’s illness, my husband realized that he seriously had to lose weight and get in shape, so as soon as we got home from my daughter’s Make a Wish trip he started running. 

Twelve years and countless half marathons, 5ks, and one full marathon later, Dave has not stopped running. He runs in rain and snow and gloom of night, he really should work for the postal service, nobody would ever miss their mail delivery if he took over.

While I use words galore to try and dig through the challenges of our life, Dave runs. And runs. And runs. For Dave, running equals zen. Always.

After cheering him on at a few races, and walking a few charity 5ks with the kids, I decided it was time. My G was off treatment. My 2 year old was in kindergarten.  My 9 year old was now an adolescent (so I NEEDED TO RUN).  My excuses were weak, but my desperate need to physically process the new moment of Life Off Treatment  remained strong.

 (Yes, off treatment should be awesome, but like Maria Von Trapp says in Sound of Music, “It could be so exciting, To be out in the world, To be free! My heart should be wildly rejoicing. Oh, what's the matter with me?”).  Not seeing medical professionals all the time was super unsettling, especially since the tumors were no smaller than when we started treatment.

Anyway, I dug out a pair of sweatpants and some old sneakers, and snuck up to the high school ball fields behind my house—and I tentatively galumphed around the soggy field. I didn’t even tell Dave for weeks that I was trying to start running, I was SO SELF CONSCIOUS. After all, I was always in the slow group for gym class, and once wore a paper bag over my head in protest…after college I would eat chips while one of my roommates vigorously did Jane Fonda videos. Ms. Fitness I am not.

But—it felt good. Not the running, that felt horrible, but moving, breathing fresh air, hearing the birds…it was good.

And thus it began.

Eventually I got actual exercise clothes, and real running shoes, and I ventured onto a road. I got a Road ID (hello, so many landscape trucks on such skinny roads!) and a headband that would stay in and a little handheld water bottle thingie.  After a few years I stopped always putting running in air quotes when I told people about my upcoming races.

Most of my running has been to fundraise for research for a cure, or to support friends who are sponsoring races to fundraise for research for a cure for NF or brain tumors or other smites.  I still don’t love it. I need MAJOR motivation to get up and go.  I only run slightly faster than global warming occurs. Officially, I run/walk--aka the Galloway Method (I love me a method). 

I only signed up for my first half marathon, having never run more than 4 miles, because my G had an MRI that looked like we’d be starting chemo again.  I was so angry I signed up for a race in defiance, like @#*&@^# you, NF! That actually was my training mantra (not kidding).  A week before the race a follow up MRI showed the tumors had stabilized and we had a reprieve.  That was awesome, but I still had to go run 13.1 miles!!

That 13.1 hurt. A lot. But crossing that finish line and NOT throwing up or collapsing was the most empowering thing I ever did. I beat my own doubts, insecurities, and memories of high school gym class. I DID THE THING. Not fast—but I did it. I got a medal and a t-shirt and EVERYTHING. I . Did. It.

And that kind of personal win IS a shimmering ZenFest.

So I did it four more times.  And honestly, by the last time it didn’t hurt more than it should have.

As of the last time—2016, when our family ran with my dad for his 70^th birthday-- I officially retired from half marathons.  The training exacerbates my anxiety—thus undoing the zen of movement. But this past weekend I ran a 5k with my now almost 16 year old—the 2 year old who needed mom all those years ago. Neither of us had trained, she relied on youth and I relied on all the other exercise I do, and both of us relied on the promise of chocolate at the end of the 3.1 miles…and it was good.  The threatened snow/rain held off, and I gave her my marshmallows while we waited for Dave to finish the 15k.

It was good.

For me, running isn’t a quick fix for zen like it is for my husband, but getting outside and moving, even to walk, to notice nature—that’s really the benefit of running for me. Running forces me into present moment awareness in a way few other things do.  Races ARE zen for me because of the Camaraderie of the Slow – My People! Everyone chugs along. Everyone supports everyone else. THAT is zen.

Movement helped me.  I know not everyone can run. When it’s cold out, I don’t run—but I have found that even being outside to meander with my snoofly dog helps with zen.  And honestly, in the cold months I use different kinds of movement to help with zen (another post).

I hear that spring may FINALLY be coming to Jersey—and maybe I can head out to my favorite nature preserve on a Saturday morning and run/walk slowly through the flowering trees and around the many ponds.  And after a run, I found the perfect zen chaser…

But that one I am saving for next post. ;)

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…

Storm in the Playroom

I almost forgot to post today...
This one is a little discombobulated, but it is so late, I just want to get something up...and as I mention below, THIS ptsd fest is still fresh.  I just don't have the energy to dig out pictures, but I will tomorrow.

May 26


As we entered summer 2011, we made another med switch for Genna in a desperate attempt to help her with her anxiety, we realized Rosie needed to wear an earplug in her bad ear while swimming, and we tried to get my son to survive sophomore year of high school.

July of 2011 was full of fun, a trip to Lake George with friends, a wondrous trip to Camp Sunshine with our bt friends, and then birthdays for Andrew (16!) and Genna (13!)…I officially had TWO teens in the house.

In all the haze of frosting and festivity, I almost forgot a double scan day was on the horizon.

Ok, that’s a total bold-faced lie. I didn’t forget.  Scan day is always like an elephant on my head.

July 26 was scan day. It went like this. (this PTSD is much fresher, so…yeah).

TUESDAY, JULY 26

just a short note...

Rosie's scan was rock solid stable. They did an extra series of ear pictures, her bones & nerves are intact. She didn't need contrast, (ergo no iv), the scan was shorter, she was triumphant and happy.

G's scan...not stable. The nurses took 4 sticks to get her iv...she needed extra meds to fall asleep, then was nearly inconsolable when she woke up (a side effect of the meds). Thanks to Joan Kerpan and Kyle's Peace G did recover from that with a new tie-dye shirt, a blanket, and coloring pages. But in the middle of her activity the neurosurgeon came into the playroom...

and time stood still.

My insides just curled up like the feet of the Wicked Witch of the East after the house fell on her.

He asked us some questions about how G has been feeling, palpated her shunt (which was working ok), said her ventricles were a little funky (my word)...and left.

Well, it doesn't take a brain surgeon to figure out WHY the ventricles might look compromised....

In some ways it was better, I had near cardiac arrest THEN, so when Dr. B cheerfully talked to the girls without the normal "stable!" at the start, I was prepared.

G has another area of growth, again in her hypothalamus, this time across from the area that scared the crap out of us last summer. So we have a blob on one side and Halley's comet on the other (that's last year's yikes, so 2010).

Sigh.

We rescan in 6 weeks. Then, if it's still bad...

Good thing we learned so much at Camp. We might need that info sooner rather than later.

I am going to go collapse (or, more likely, wander the house in a kind of wired dismay, I was too calm at CHOP) , and I will likely hide a few days...thank you for praying for us, and please pray for my G. She's ok right now, but I don't know how she'll feel once she thinks about this with a clear head tomorrow.

thank you, and peace,

k

Brain tumor note: if a neurosurgeon comes to find you in a playroom, you are totally, epically, thoroughly screwed. SCREWED.

Monday, August 1, 2011 1:04 PM CDT

Hey again.

So…here we go again.

I should be researching, I should be reading up on things, I have not started that yet. I feel the inexorable passage of time acutely, but I am finding it hard to get ahead.

For those who have asked, Genna is doing ok right now. She really hasn’t said ANYTHING about the scan. I mentioned at Costco the other day that we were going to stock up on snacks and such (pretzels, granola bars, the staple foods of our house) before September, and she put her hands to her head…I hastened to remind her that we did this last year, too, and just ended up with months’ worth of peanut butter.

We can always hope, right? It’s just that last year’s Yikes was NOT introduced by a neurosurgeon in a playroom. Mega Eek.

G did ask me, oh so quietly last night, if she had to start chemo again would she get another port.
The 4 Stick Yikes of last week’s scan has been bothering her.

So she IS thinking about it, and I expect I’ll be fielding more questions with uncertainties and crappy answers over the next 5 and a half weeks.

She had an odd moment the other day, her eyes felt blurry…but she passed the maternal shunt check, and after a little rest felt better. Ugh.

Personally, I kind of don’t know what to do with myself. So…did I call a therapist finally? Did I go and spend time at church? Did I find a quiet spot to think and regroup?

Um, not exactly.

I signed up for a half marathon.

It seemed like a reasonable idea. I was so angry. So upset. So determined to run. To pound every last cellular yikes out of NF. So angry. Any time I went out to run I muttered "f-you, NF, F-you, NF" as a cadence to keep me going.

Anger is a powerful motivator.

Of course I was also terrified. So I asked Rosie to cheer a lot for me, but really, what was the worst that could happen?

“Well,” she said, “you could collapse. Or there could be a tiny rock on the ground and you don’t see it and you fall down and don’t finish the race.”

Yes.

So once again we were waiting, waiting to see what would happen…and you know, This time, G was scared. For the first time ever, she asked me if she would die.

HOW THE HELL DO YOU ANSWER THAT?

She still wanted to celebrate 5 years off chemo. Sigh. Hard to be festive when disaster is lurking.

And then we were back to scan day, August 31, 2011…

Wednesday, August 31, 2011 7:59 AM CDT

quick word:

stable.

no chemo now.

I am road kill, but so relieved. This roller coaster is killing me, but we are so grateful and relieved.

Longest day ever (left home at 5:17 a.m, home at 8:20 pm), clinic was insane, drive home was awful, but G is stable. The @^#&(@umors stopped again. They did not shrink, they did not do ANYTHING...and you only treat low grade tumors if they are causing symptoms or growing (since chemo is mostly intended to stop them...G had gallons of chemo and it never shrank ANYTHING). So the good news of STABLE...which is awesome beyond all...is still in the context of holy @^#@That's a pile of tumor in my kid's head.

But tonight, I will sleep and hopefully not dream of oncology, and G will hopefully sleep (she is a train wreck right now, who can blame her?)...we live to fight another day.

I asked our doc how many bullets can we dodge? A lot, she said. So we keep dodging...

thank you all. thank you God, and thank you all for pulling for us. This round has been hard, it's so hard. It means so much to G to know you are in her corner...

Another reprieve. G could start 8th grade, she could just be a kid again for a little while…but this scare knocked us down, badly. And dang, I still had that half marathon to run!