Tuesday, May 21, 2013

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

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…


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.

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