Zen Playlist (ish)

Ok, so apparently any time I post about the continuing work of Zen, the Universe hears that as a challenge…and a cosmic “Challenge accepteeeeeeeeeed” echoes eerily through my home. Something like that.

Sometimes things just don’t get better, or other things pile on, or the cumulative effect of many small irritations in my life becomes  a pile of “be a speed bump”itis.

Today is one of those days. But I have to go to work/circus/get G/home/deal with ongoing car woes/youth group stuff for R/grades are due/etc. No time for speed bump.

So today, I upped my time with the light box thing (yeah, still waiting on that to help, but the Mayo Clinic says sometimes it does).  I did my praying time.  I worked out with weights and felt like Beast Mode. I ate a donut (thanks, mom!). And now I am listening to loud music. LOUD.

Today the work of Zen is riding the wave of What the What?? that has marked the last few weeks by listening to motivational music and dancing it off.

I cannot dance.

Like, not at all.

Like, robots have actually travelled from the future to ask me to please never do the robot. I have the rhythm and coordination of a gourd. Those inflatable guys you see outside car dealerships have better moves than I do.

So what?

Today’s Zen is embracing the value of dancing/singing the irritation and frustration of many situations out, even if dancing looks a bit like frantic flailing and the singing is…what it is. The dog isn't howling along, so that is something.

“I can dance if I want to…” (currently playing in background). Yeah. That. So two of our cars are dead. So we have family situations and work situations and school situations.  “We can dance!”

Weirdly, it helps.

And when my family is home, and they find my manic happy dancing annoying, that is just a bonus. ;) Then I can say “you don’t want dancing? Challenge Accepteeeeeeed!” as I flail around them to “Walk Like an Egyptian” or “Safety Dance” or the B-52s or Sia.  They love that so very much. 

Fun Fact:  It is hard to stay crabby or stressed when you are trying to be the crazy medieval lady from the Safety Dance video.

So this is no newsflash, again—but today, all I have is a playlist of happy/determined music and a dog who woofs when I tell Alexa what to play next.

What’s your Greatly Annoying Season Playlist? What songs do you use to tell the universe you are ready for whatever challenge it sends?

Some of my favorites:

Shiny Happy People, REM

Not Afraid, Eminem

The Greatest, Sia

O Fortuna, Carl Orff

Unstoppable, Sia

Anything ever by the B-52s, the sillier the better (Mesopotamia!)

Tubthumping, Chumbawamba

All Star, Smash Mouth

Safety Dance, Men Without Hats

Walk Like an Egyptian (super silly), the Bangles

I am a Rock, Simon & Garfunkel (more if I am mad)

Won’t Back Down, Tom Petty

Lose Yourself, Eminem

Shake it Off, Taylor Swift

I could go on (and on and on and on)—so what’s on YOUR playlist of YEAH, BRING IT!?

Doing the Work

Zen = Work.

Yes, guest blogger Captain Obvious is in the house today.

Again, I am late. Last week two of our three family cars died ON THE SAME DAY. And not just like, merely a flesh wound—the one is too expensive to repair (ie is now being driven by firstborn with a supply of coolant to keep it from perpetually overheating) and the other is a challenging repair but STILL cheaper than buying two new cars unexpectedly at the same time. But until it is fixed, I am in “borrow a car to get anywhere” mode. I only work part time, so that makes sense.

I am actually kind of surprised, my initial response was not !@((#@&#*& AAAAAAAAAAAAAAAAAAGH, but more of a “hey, nobody is dead. We can get a new car”.

For me, this is kind of a Zen Gold Star.

That said, the stress of having no car, of trying to help the two afflicted car owners deal with their collective frustration and stress, of dealing with ongoing other painful stuff here, of navigating work and school and schedule drama left me with no oomph to write anything.  For me, anxiety and stress are really contagious. I need some emotional Purell or something so I can be a better support for people in my life who are struggling with things instead of just catching their stress. Can somebody invent that?

On second thought, don’t. Being empathetic /compassionate is not something I want to limit. I just have to do the work to keep myself afloat while helping others stay afloat.

Zen = Work. And at the end of last week, I could only do the work in real life, not on paper (or, more accurately, screen—although I do most of my planning, etc., on paper. I need the physical act of writing to help me get my brain in order).

As I have been trying to help some of my family members with stuff, we keep coming back to this—we have to put in the work to see results, success, etc. Zen is achieved, not really discovered, even though I keep referencing my search for Zen—it is really the work of searching that will hopefully maybe finally achieve some state of peace.

I think the real gift of this time of medical respite is that I can work at using the tools of yoga, writing, bullet journal, prayer, books, podcasts, the little light therapy thing that I have not seen any effect from yet but I am hopeful, exercise, sewing, connecting with friends, practicing gratitude,  etc. to try and get through those moments where I feel skin crawly anxiety. Having the mental space to think “you must work NOW at dealing with this feeling instead of just lying on the floor” is a gift. I am really working at using it.

But gosh, it IS a work.

About 10 minutes ago as I was wandering around my house I actually out loud said to myself “SIT DOWN AND JUST WRITE SOMETHING!’. The dog looked a little perturbed (I know, Coco, you don’t have thumbs, I was talking to me), but today the work was getting my ample backside in this chair and typing something. Lesson plans are done. Test is written. Only one thing left to grade. SIT AND WRITE.

This is part of my work. 

I guess I just encourage everyone today—keep doing the work. Knowing that getting stronger and healthier and more balanced is a work helps me get past my sluggishness sometimes. Just like I keep going to my job, I need to keep working at me, too.  

Do the work. Achieve the Zen. Keep movin’. We can do it.

Perfect Place to Stop the Show

May 30


In the words of Joseph and the Amazing Technicolor Dreamcoat (hey, I’ve made it an entire MONTH without a Broadway reference)… “this would be a happy ending perfect place to stop the show! (Genna) after all has gone about as far as she can go!”….

Yes. But no.

See, even after 8 years of yikes and such (EIGHT YEARS. I could have a doctorate by now…not just the one I gave myself in Pessimism and Snark Studies), we have to keep going. Miracle Monday ended with Genna getting chemo, and THAT was our miracle.

The changing definition of miracle has been a hallmark of this entire journey.

Genna started high school. She had more neuropsych testing which did reveal that yes, tumor growth does cause more damage to learning and processing (in the words of Homer Simpson, “DOH!”). She continued with chemo, and over time the side effects have gotten a bit challenging…but so far EACH scan since Miracle Monday has shown further reduction in tumor size in that scary section near the foramen of @^#(@% Monro .

 (BT note: the @^#@% added before brain parts is only added by moms and/or dads after years of seeing tumor locations described on radiology reports and having a NEW unheard of locale show up).

We’ve had to hold chemo a few times due to elevated protein levels (back in January, and now since April), a common toxicity associated with Avastin, indicating that G’s kidneys need a break (she feels fine). We have learned that even a teeny tiny scratch bleeds like the dickens if you are on Avastin. We’ve also learned that some of the hidden side effects of Avastin are harder for a teen to deal with…

As a teen back in the tumor battle (not a little girl anymore), G has continued to struggle with school, with terrible anxiety, with sadness sometimes. She does have some FRIENDS this year at school, real friends, a FIRST in all these years. BT/NF kids often have trouble interacting with their peers, and G has certainly experienced this.

At the same time, I have gotten scarier and scarier in dealing with people who won’t step up to help G when she needs it, or who won’t take the time to LEARN what she needs. I struggle these days more and more to find my emotional footing; prolonged survival mode can be very numbing and very demoralizing. I can use certain unprintable words as EVERY part of speech. In the same sentence.

No, really. I can.

Dave, too, has lost a lot of his original optimism and zen. A lot of the time we are mostly alone, the associations we used to have just couldn’t withstand this many years of cosmic smite. I am increasingly grateful for my family, and for the folks in Dave’s family who support us. Those who remain have been with us every step of the way, and we can never thank them enough.

This road is hard. Not to be all “cue the violins! Release the mourning doves!”, but it’s hard. Stupid hard. And there is no end in sight.

NF as manifested in low grade brain tumors is an ultramarathon, not even just a regular marathon. There are mountains and crevasses and raging rivers and at some point you’ll be duck taping your feet to hold them together. NF / low grade brain tumors are like THAT.

Still, G continues to love music, and babies, and our dog Coco. She rocks out sequins and animal print whenever possible.

In 2 days G’s big brother will graduate from high school, a day I had some doubts about. The wreckage firstborn carries from years of this battle causes me more pain some days than G’s stuff, because it is so hard to find support for siblings. Rosie is doing well, she looks out for her big sister, she is STILL stable, thank God, still tiny (her NF thing, she is super small), still as shy as G is outgoing.

We carry on…

I don’t know what our girls’ future holds. I so want to be a grandma, but I understand that that may not be possible. I so want to help Genna pick out a wedding dress someday…heck, I so want to help her pick out a graduation dress in a few years (I already told her she could do sequin animal print if she wants. Really. So…yeah. I’m ok with that). But I know even that is not promised us.

We only have today. As our friend Sandra once said, back in her sickest hours near the end, when she heard someone say we have to live one day at a time , “how can you live more than one day at a time?” …and that is so true. We only have today. I forget this about 8 times a day, but it’s so true.

We have 2 weeks of school left. G can’t do chemo on Monday as planned, she is THRILLED to not miss school. Then we have finals, and that Thursday G has an eyeball check in Philly. Hopefully the following Monday her protein levels will finally be ok to resume Avastin. We can’t really stop…we know what happens when people stop Avastin.

But we only have today.

Tomorrow I will answer the “Now What?” …but we only have today, and today G just came back from a pool party at art, she has a youth group party later…she is freaking out about school so she is listening to a Popple   www.popple.us  cd to make herself feel better…

We only have today.

And today isn’t all that bad.

Living and the Sunshine (ala Camp)

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 25

Today my Rosebud is 11.

In the midst of stable, challenges continued. School was a CONSTANT source of stress for G. My son was generally imploding… the sibling wreckage of brain tumor/nf diagnosis is a gift that keeps on giving. And after 4 years you age out of Super Sibs, the awesome sibling support organization for onco sibs. They aren’t made for 6 and 7 and 8 years of battling…. Rosie was mostly fine, but she had some plaguing stomach pain issues (which necessitated a bunch of doc appointments) and her ear bothered her at odd moments and I had to have several annoying conversations with her orthodontist about the realities of orthodontia and brain scans (BT note: MRI picks up metal in mouth as artifact on a scan, it blurs the images, so kids with braces have to generally get them OFF before scans. Took me a few conversations to get the orthodontist to understand that only one of us was the expert on brain tumors in my kid. Not pretty). My workload increased, which was a good thing but also a challenge.

Scans following the Scare of Summer 2010 continued to be complicated but stable. Scan reports used words like “infiltration” and “slowly grown”. We knew the writing was on the wall, but that is so hard to explain. Genna SEEMED so good, you know? A lot of people in our family stopped following the caringbridge page, it just got to be too much, I was told I was too depressing.

Living with the elephant in the living room was becoming untenable.

So finally, after much fear and trembling, I signed our family up for a family brain tumor camp, Camp Sunshine. I was so excited and SO nervous to finally meet some of the families I had known virtually for 6+ years. We needed to find some place where our daily yikes made sense.

And we got accepted! Over President’s Day weekend, we hit Camp Sunshine for the first time…

(I need to) try to express in words what Camp Sunshine was like.

Let’s put it this way:1. Some of my children would rather go back there than go to LAKE GEORGE. Seriously.

2. One of my children said, “I wish people in NJ were like my friends at Camp, they were just so nice”. (not one of my female children--!!!!!!!!!!!!).

3. That same child was seen smiling, laughing, and participating in goofy camp stuff. (!!!!!!)

4. We got to be in a room with 40 families who speak our same terrifying dialect of smote.

5. Better yet, we laughed and laughed with those families.

6. I got to finally meet some people who literally have carried me in some of our darkest times over the last 6.5 years.

7. Genna instantly endeared herself to all of the 2-4 year olds present.

8. Rosie skied down a mountain. Dave & I snowshoed on a lake. Egads! Adventures!

9. I got to prove the existence of Dave to people I only have ever spoken to online.; )

10. I DID NOT WORRY ABOUT SCHOOL OR COFFEEHOUSE WHILE THERE. NOT ONCE.

11. We met at least one other child with some of the identical food issues G has. I am not just a food psycho to G. This hypothalamus crap is for real, if you’ll pardon my use of the vernacular.

12. We met tons of amazing new friends.

13. Camp Sunshine felt like Give Kids the World (where we stayed on G’s Make a Wish trip)…sans palm trees and plus lots of snow. The feeling of love was the same.

The whole place was just LOVE.

eyeballs. Note the Yankees Ensembles.ahem.

Major lily pads!!! Camp gave us the oomph we needed for life, for the Coffeehouse that was around the corner, for our next race, for everything. Camp Sunshine IS the Best Medicine For a Family, EVER.

G also had a scan around the corner…and it was stable, with one area a speck SMALLER! We had never seen that word before, even if it was microscopic, there was a portion of tumor that seemed smaller. Woo!

We were living.

Rosie has taken to spelling out neurofibromatosis and plexiform neurofibroma and optic glioma (hers doesn’t involve the chiasm or hypothalamus), she carried the words on little post-its into her 3rd grade class to add to the spelling bee. She owns those words now, without the fear that I have when I hear them. She doesn’t know the fear yet, and NF is all she’s ever known.

By this time a lot of our support system had moved away or was planning to move away. This was so hard for G, and for us, too…you don’t realize how hermit-making perpetual oncology precipice can be. Meh.

In the spring I got the official confirmation, both girls would scan in July, right after G’s 13th birthday. This was in the back of my mind as I trained for the NFE relay down the shore, signed up for Camp Sunshine for the summer (we got in! woo!), tried to get my firstborn out of an academic abyss he had flung himself into, met with teachers at G’s school about ongoing issues…endless…

Our real struggle was with a medication switch for G, she had outgrown her original “peaceful” medicine, and our first attempt at a switch was an unmitigated disaster.

Genna’s medication switch has become more challenging. Without going into tons of details, let me just say I hate brain tumors with every fiber of my depressed being and I hate people who say that serious brain issues can just be fixed with happy thoughts and a turnip. I hate that brain tumors can so deeply mess with who you are. My poor G is so unhappy, just miserably anxious and unhappy. We are continuing to fiddle with the dose, and hopefully as I begin phase 3 of New Med this week we will start to see a happier Genna again.

She used to be so happy. So freaking happy.

Did I mention my thoughts about brain tumors and nf and those things that rob my child of her childhood? I did? Oh, phew.

Anyway, please pray for my Genna. I hate hate hate the way things are here right now for her. I so want her to enjoy life.

I had no idea then how much harder things were about to become.

Excuse Me, Your Stress Is Showing...

Excuse me, your stress is showing…




“Mrs. Camiolo,” one of my students called from the back of the room as everyone pulled out their textbooks for class. “You’re…you’re wearing flat shoes!”



Within seconds a full blown discussion of how odd my choice of ballet flats was broke out in the classroom. “You look so much shorter!” called this young lady (who, even when I am wearing flats, stands about 4 inches shorter than I).



I felt some surprise that my students NOTICED. I mean, really, I am an antique compared to them, my wardrobe is practically medieval (remember how old 40 seemed when YOU were 15? Egads!) . And most days I do make a conscious choice to wear tall shoes. I feel like it gives me an edge to be 5’10” in a classroom full of teens. I feel like An Official Teacher somehow, which is kind of funny since so many of the teachers of my youth were middle aged women who wore comfortable shoes and polyester slacks with a permanent crease, men who only had one pair of nondescript “school shoes” , or nuns, who wore the most practical (and often, no disrespect intended, not super snazzy) of footwear at all times. But for me, now, tall shoes = confidence.



Anyway, the moment amused me. I told them that by tomorrow I’d likely be in Converse, because that was just how my week /month/year was going. I did suggest that the Student Council members in my class work to get us a Chuck Taylor day, but I think that just confused them.



And once again, I was brought up short by the realization that yes, my stress is showing.



Granted, stress showing through the choice of flats over heels is really kind of silly. Ok, it’s not kind of silly, it’s uber-silly. But it’s real. I just didn’t have the mental energy to wear tall shoes. I just didn’t care.



I also noticed in the past week that people who know me at all KNOW that my normal answer to the question “how are you?” – “super fabulous, and you?”, is a big fat lie. People who know me less well (or just don’t feel like dealing with lurking drama) just take it as genuine (sigh, I’m sorry), but for the first time in the past week I’ve had folks (who I care about a lot) stop short and be all sympathetic and supportive when I give my stock response.



Hey, even my sarcasm is failing to hide the stress! This could be serious. Houston, we have a problem…



I’m not sure what you do when stress starts to ooze out from every possible crack. Sometimes exercise, vitamins, cutting back on caffeine, praying extra, trying to go to bed earlier, breathing deeply, shopping, eating chocolate, running, listening to music…sometimes NONE of these things even remotely take the edge off stress. Heck, if I hear the song “If I Die Young” ONE MORE TIME in my car, I am going to have a conniption. No joke, 3 times in the past 2 days!



Even trying every zenlike trick in the book, I still feel like I’m crawling out of my skin. My poor 9 year old keeps asking me at church if I’m ok, I look so sad. Aaaaagh! Dang.



For my kids, the ones I gave birth to AND the ones I teach, I have to find ways to keep my zen, even if it means stapling it to myself somehow.

I opted for my 3 inch heels again today, and my sophomores felt better (yes, they noticed). I may just bring an auxiliary cable in the car so I can use my iPod and avoid any unfortunate Band Perry incidents, and maybe I can bake something. Whatever I do, I have to figure something out, because just like a live performance of Nicky Minaj, nobody REALLY wants to see my stress showing.

So…anyone have ANYTHING else that I haven’t tried yet? Obviously the circumstances of life here are kind of epic, so within that context…what the heck do you do so YOUR stress doesn’t show?

Maybe I could go SHOE shopping…hmmm. That could be win win for all concerned…