Slogging On

For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both. I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.

May 21

CURE NF!

So with 2008 underway, this is how it was at the Casa Camiolo…

Still singing a few too many choruses of NF Sucks to the tune of Jingle Bells, I am telling you it is like the Copa Cabana of Smite Songs…

Uh-oh…just occurred to me…seriously at this very second…sing with me…

Neuro-fibromatosis

Is a crappy little thing,

About which I hate to sing…

You know it’s Neuro-fibromatosis

A disease we can’t predict

Makes me want to go get sick…

I swear to God, Copa Cabana is exactly like a benign brain tumor or nf or both, it HAUNTS YOU!!! And grows, and can take over everything…and you can’t shake it, even if you run and hide it follows you…

How could we have gone this far without me figuring out that neurofibromatosis FITS TO COPA CABANA….?

*********
Semantic note regarding NF: NF is technically a disorder, NOT a disease. Some people get very upset when NF is called a disease. In my rendition of Copa Cabana ala NF, "disorder" didn't scan properly. Also, NF had always hit my child like a disease, so I call it that if I want to. Smite-wise for us? Disease.  But science-wise, it's a disorder. Lesson done.

But then we HAD to keep living. School was busy. The kids were busy. Dave was still working about 87 hours a week. Just like there’s no crying in baseball? There is no “fear break” built into real life, even real life with NF and brain tumors.

I realized G needed to talk to someone local, to find some help for her anxiety and food issues, but I had a terrible time finding anyone who would help us. We scared people away. It was such a frustration, we were too far from CHOP to go THERE for counseling, nobody in our insurance would help us…it was a struggle. I did finally find someone, out of network, which meant $150 a visit. But it helped. So…we made it work.

Life went on. Andrew broke a finger, Dave kept running, we saw David Bailey in concert again,



David Bailey, May 2008



went to Six Flags with tickets Genna won by calling into the radio (while I was in the shower…of course they needed to talk to mom…yikes).

G at Six Flags, being goofy

I substituted at school occasionally and hid all the bread and pretzels in the house up in my bedroom so my poor hypothalamus-challenged child wouldn’t eat them all. Brain tumor note: the hypothalamus is like the brain of the brain, it controls an awful lot of really necessary body functions, and once it’s broken it cannot be fixed. Ever.

I even secretly started running. Just a little. And I hated it. But I felt like if I tried to run, or, more accurately, "run" , maybe I could contribute to this cure business some.




Lake George, 2008


G’s August 2008 scan was stable…but…

I knew. I knew the “but” was there as soon as our doc told G she was stable. I know our doc too well…she has a way of not saying things before she says them, I just know, and she knows I know, and it’s just a pile of ughulous knowing.

There was an area of concern in G’s hypothalamus. We needed to scan again in 6-8 weeks, throw in another spinal scan for good measure, if things looked ANY more concerning we might need to take some action.

And with that, I was back in the abyss.

But until September we just had to wait. G went to camp and had a dazzling time (she literally talked THE ENTIRE RIDE HOME, I’m not sure she stopped to breathe), Andrew went to church camp and came in 3rd in the Olympics there, Rosie oozed cuteness. We passed the 4 year mark. I could have gotten a college degree in the time we had been living with brain tumors.

And on September 15, G’s scan was stable. We had another reprieve.

This uncertainty, this fear of what could come, it is so paralyzing. I understand, while reading through all of this, now nearly 5 years later, why I am such a slug today. It is mind numbing to be in survival mode all the time.

It’s like this:

I’ve realized that scan day, even a Good scan day, rips off my fabulous haute couture Denial Dress and leaves me in reality rags…looking at all the pictures…the pervasive wreckage inside my child’s head…it’s way not cool. I have said to about 5 people this week that it’s really akin to stepping out of your house the day after a hurricane and saying, “phew! We weren’t swept into the sea!”…but then looking around and seeing a boat on your front lawn, a tree on the roof which is now on the neighbor’s yard…a cow wandering by…eek.

The spinal scan is so fabulous I can’t overstate it. Reality doesn’t always bite.

The brain scan…well, it’s stable. Stable is good.

My kid having a brain tumor: not good.

So the not good is as good as it can be, which still doesn’t leave me feeling warm, fuzzy, and woohooish. And seeing Stable means I have to SEE the scans, which I never look at once home unless ABSOLUTELY necessary. Once is enough. It’s not like I forget…

Or, as a friend and I discussed, we can move forward, but not on. The Bag o’Woe is coming with us. But we still get to carry it, and that is ultimately a good thing.

But we got to keep going…the weekend after the scan both Andrew and David ran the Philly ½ Marathon for NF Endurance (Andrew placed second in his age group! Not that many 13 year olds ran, but whatever!). At the finish, we were waiting and cheering for Dave…and then we saw him, bent in half, staggering like a drunken sailor.

Um, no, that is not how Dave finishing a race is supposed to look.

People helped him across the finish, I was running along the fence and screaming at him , then he was lost in the crowd (it’s a huge race, everything is barricaded at the finish), I was panicking, finally I located him in a medical tent, 2 ivs plugged in, he was barely conscious but managed to whisper, “I beat my time from last year!”…

We think it was an electrolyte issue, not a hydration issue, per se, and we know that Dave has to be REALLY careful about this kind of thing when running. Is this an NF issue? Maybe. Dave has always had weird hydration issues, body temp issues. NF is so odd, it could be an NF thing. Is it a scare the crap out of your wife issue? Absolutely. At least we did get to add another hospital to our “Hospitals of Philadelphia Grande Tour” . Ahem.

I didn’t even get to see Andrew finish. Sigh.

But the NF Endurance folks were an awesome support as I tried to figure out what had happened to Dave—and we did raise awareness with the medical folks at the race. Ergh.

School resumed in full force, the fall busy-ness was upon us…

Halloween '08 . Rosie wanted to be a ghost.

In one glorious hooray, Genna got adopted by the Rutgers Women’s Lacrosse Team through the Friends of Jaclyn Program. We went and met the team, G LOVED the idea of this, even if none of us had a clue how lacrosse worked. Coach Laura was so kind and welcoming…joining the team was such a beautiful thing for G… (I know I have a picture, I just can't find it).

And we had another stable scan, and another, although each time the scanxiety almost killed me…

On January 20, 2009, we brought BOTH girls for a scan. This is generally ill-advised, but we did it. This was my plan…

We will leave our house hopefully before 5:30 am…coffee around 6 (yes, that merits scheduling…it also marks G going totally NPO, we’re cutting Rosie off then, too…can you imagine letting Rosie sip juice while G is fasting? Hell hath no fury)…Anyway, hopefully we’ll navigate the South Street detour for the first time around 7 & then check in by 7:30.

Genna scans at 9, Rosie at 10. Rosie’s scan will be longer, there’s some new imaging study for plexiforms, Dr. Fisher’s project? Whatever. Hopefully we’ll have both girls out of their respective scanners by 10ish and 11:30-12 ish , um, respectively.

During the scan I plan to do one or more of the following:

1. Listen to my Ipod, either something LOUD or something Happy, not sure.

2. cross stitch the super easy thing I started so I’d have something for scan day.

3. say a rosary.

4. continue reading Word Freak, a book about competitive Scrabble players that Rita gave me for Christmas. I started it for tomorrow. New things don’t get started on scan day, I’ve learned that.

5. prepare an entry for the Wergle Flomp poetry contest. A contest for Really Bad Parody Poetry? My own personal nirvana…

6. Write the devos I need to get done.

7. stare at the floor.

8. eat honey roasted peanuts secretly, so as not to be a problem for kids in the waiting area who are NPO.

9. stare at the wall.

10. ponder how hard would it really be to memorize letter patterns so I could be a competitive Scrabble player.

11. Call Ronald McDonald House to see if they have room, if they don’t…panic and start calling hotels. Now we remember why we usually avoid this option, the possibility of panic is too great.

12. Jump out of my skin EVERY time someone walks through the door, especially if they are a) a doctor I know or b) have “neurosurgery” embroidered on their coat.

13. probably wish I hadn’t given up chocolate for a month.

Likely I will mostly do 1, 7, 9, 12, and 13 (and make Dave do 11).

And both girls WERE stable, and we lived to fight another day. But oh, the battle was starting to feel LONG.

Not unlike this blog entry. Ahem.

And the battle would only grow longer as time went on.

I Have Been to the Mountains...

I figure by now the consensus is likely one of the following options:

a. I did NOT survive the Jersey Shore Relay, I simply got washed out with the tide.

b. I decided while in Seaside Heights to embrace my true Jersey Girl Self, call myself K-Mom, and start a reality show about people who don’t really drink, never go to bars, have natural volume to their hair that they try to subdue daily, and get sunburned way too easily to hang out at the Shore for long.

c. I was so flummoxed by trying to run that I headed off course and am still somewhere on the Turnpike murmuring “what exit? What exit?” to people driving by. (1)

d. I actually SURVIVED the Jersey Shore Relay, Basked In My Own Glorious Survival, Marveled at NOT dying on the course, and then Collapsed Utterly Wordless for 3 months.

Note (1) for true wannabe Jersey folks, this would take SOME wandering, as it is of course the Parkway, not the Turnpike, that takes us to the Shore. Not the beach. The Shore.

I did survive the race. Actually, I kicked some race bu…ok, let’s not get crazy, I survived. It was wildly emotional, physically yikes, and surprisingly satisfying. I still hate running, but running for a cure for NF, this maybe I could do again.
We’ll see.


This has been a season of mountain climbing, figuratively, for me. Maybe I’m prepping for being officially grown up in less than a year. I always hoped I’d grow up to be Aretha Franklin. I still have my fingers crossed on that, but things don’t look promising. Growing up is hard to do.

Anyway, in May I got back on an airplane for the first time in 15 years. This was a mountain of Everest proportions for me. I have a deep seated aversion to altitude, far more deep than my aversion to running. If I collapse running, police could figure out who I was pretty easily, I wear an ID on my ankle. (http://www.roadid.com) But collapsing from 35,000 feet? Ugh. I left a toothbrush at home in case investigators needed DNA evidence to figure out which pieces were me if we didn’t make it. Really, I did.

Without going into the 2.5 hour delay with thunderstorms followed by 6 hours of eek that constituted my flight, I can now say I survived that too. I might even fly again. To Florida or points closer. No more West Coast for me. At least not without medication. The theoretical “big girl pill” does not have the clinical strength of an actual pill. I have learned that the hard way (see “6 hours of eek”). But I got through it, and I’m glad I did.

At the end of that airplane ride was an adventure, the Golden Gate Bridge, astounding mountains bigger than any I’ve ever seen (or driven over, YIKES! What is it about guardrails that folks out west find so offensive? Eek!), a beautiful wedding, a new sister in the family. Just like the race, the plane ride “mountain” was ultimately totally worth it.

I’m not sure what mountain is next. Maybe a class trip with 22 high school seniors to our hospital city? Maybe just getting through our next medical moment? I’m not sure. But I will keep climbing mountains, or at least scaling hills, or stepping over speed bumps or something. The morass of my own head tends too often to suck me in, and I lose my ability to write things out. But even though I may never be the Queen of Soul, or feel like a Natural Woman, I plan to keep moving. Even little mountains count for something…

Even little mountains like putting backside in chair and writing a blog entry…

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…