Zen and the Weight of Ugh -- A Digression

So: Zen is a path, a moving moment in a spectrum of experience. Zen can’t be forced, it has no endpoint. I can’t control my zen, but I can practice healthy striving towards being my best self. I can use the tools I have learned to keep movin’ right along…

As long as it is a good day.

Let’s just call this The Great Reality Check. Again.

Most folks reading here likely know that in 2004 my then 6 year old daughter was diagnosed with a large brain tumor, secondary to a genetic condition called Neurofibromatosis Type 1.  While I told her story (up to a few years ago) in this blog,  this space was originally meant to be a space for medical free writing. 

Yeah, that has only sort of worked. Context is everything, and brain tumors completely changed the trajectory of our family's life.

For my kid, after one failed chemo a second tumor area appeared. Throw in a third chemo fail a year later and add a third tumor in an even more precarious location.  

G, the week after diagnosis 

and her first surgery

This kind of diagnosis and its concurrent ongoing horrors leave a mark, to say the least. A mark on me, my spouse, my other children, my extended family, my friends…and of course on my child who remained a sparkly smiley diva queen goddess through the awfulness of her suffering. 

Dressed for Chemo Protocol #5, 2012

She never lost her faith. She would wail and express loudly her displeasure (OH SO LOUDLY), but she stayed so positive. For her, we all kept going.

Everything fell apart over two years…and then barely held stable for 5 (many scares)…then fell apart again over another two years…then two other unrelated medical issues in subsequent years…we are talking a decade of really difficult stuff.  Her older brother and younger sister endured a complete upending of their lives, too, over and over. And overall, despite her own fears, my mighty G stayed positive and hopeful.

In the middle of this we found out her younger sibling had medical issues as well—challenges she prefers to tell in her own way, her own time. That is all I will say about that… well, and that she too remains positive and carpe every day-ish about her life. 

I wish I could say the same for everyone in their orbit, starting with me. 

In my old job some colleagues found me “scary” and told me so.  Hearing this hurt. But they were right.  Faced with a life and death battle for my kid, the "don't rock the boat", "avoid conflict at all costs" pre-Ugh version of me ceased to exist.  Life is too short to put up with garbage--especially when my kid's peace and well being were compromised. 

Massive anxiety caused by the general chaos at my old job also made me “scary”.  I desperately needed order, needed SOMETHING to work smoothly, because the weight of G’s Ugh, the chaos it wreaked and the late effects it caused were (and are) omnipresent, even when we were not in the middle of actual medical crisis. 

Stable brain tumors are still brain tumors.  In my kid's head. 

!@^&!(@%!#%

I can’t begin to talk about trying to be more zen without acknowledging the Ugh—because it is always there. Always. No snow days for ugh. Always there.

The weight of ugh is real. And some days, the weight of the ugh that hit our family in 2004 just flattens me. Anxiety and mild depression were my companions BEFORE my child got sick – pediatric oncology didn’t exactly perk things up for my brain. 

So—this is how I see the Weight of Ugh in life. Maybe this is helpful. Maybe not.  I think everyone has something—or at some point you will. I hope not…but life tends to smite. And learning to live in that smite and still keep moving forward has been the work of the last 14+ years here. 

If nothing else, know you are not alone when you are carrying Ugh. The isolation Ugh leaves in its wake is one of its most awful legacies. You are not alone.

***********************************************************

In the beginning, the weight of ugh is everywhere and everything. It crushes the soul. There is only darkness and shock and despair.  In our particular journey, we’ve had a few repeats of this stage of the weight of ugh. 2004... 2005...2006...2008...2011...2012...2016.

This is the stage (at least the first time) where people rally support and love. This is the stage where you really need folks to run interference for you on information sharing, etc. This is the stage where you feel like darkness is swallowing you. Everything is darkness, darkness is everything. "I wake and feel the fell of dark, not day..."

This is the stage where you can taste terror, where you can feel it. Hearing a devastating diagnosis...having a chemo fail...having new tumors show up...having all the tumors grow dramatically instead of shrink while on a trial--in these moments terror's metallic taste fills your throat, and a vise tightens around your chest, your blood pumps hard in your ears. 

Even typing this, I have to take a deep breath.  This is not today, at least not the today when I am typing.

In the second stage of ugh, you start moving as best you can—dragging the horrible weight, barely able to stand under it. In our case this stage was the start chemo/do research/disaster response portion of things…and honestly, stages one and two wavered back and forth a bit. I would just lift the darkness a speck to do mom stuff and then school would call to tell me my kid could no longer see any letters beyond the big E on the eye chart. I could rally my 6 year old for clinic and then find out her chemo failed, tumors grew.  Stages One and Two are a nauseating seesaw back and forth. 

By stage 3, you learn how to balance the Ugh a little and drag it along, but gosh it is heavy, and you strain to get through the days. Time has passed now. Some of the support crew have moved on to other needs and crises, and hopefully you find some other support within the Community of Ugh. You realize at school events or other social things that you are living everyone's worst nightmare, and that gets super awkward, super fast. But you keep going as best you can. You have responsibilities. What choice do you have? Laundry continues to pile up. Kids have to get to baseball practice or ballet. People at your house still want to eat dinner. You keep moving.
                                     
Stage 4—the Ugh is just a part of your day. You can drag it along with you, do what you need to do, but don't forget it. Ugh has changed you. Not necessarily for bad or good, just…changed. We existed between stages 3 and 4 (back and forth) for a long time. This is when I was most scary. Ok, I still am scary if you mess with my kid. She doesn’t have any scary in her, so that is my role. I remain utterly unapologetic about that. Still—in this stage of Ugh, other folks may have moved on or forgotten that you are still dragging this thing behind you. They resent that you aren't the same, or they just move on. You have a new normal. Meh. 

But you know that your people in the Community of Ugh are YOUR PEOPLE. And you are grateful for their strength when you have none, and you can share your strength when THEY are being smote by new Ugh. 

You cannot ever GET OVER the UGH. Like I said a few posts ago, you have to just learn to BE with it. Ugh has become a companion for the road whether you like it (um, no) or not.

THIS IS SO CRITICAL. The Ugh exists as context for EVERYTHING. Every. Single. Thing. All things filter through the lens of whatever catastrophe struck. Just like I can only see my computer because of my Coke-bottle lenses on my glasses...I can only see my days now through the lens of my lived experiences through Ugh. 

And thus we reach Stage 5 of Ugh, when Ugh lingers in the background. You know it’s there. Its shadow is long. But you can live. In our case—we interact with people now who do NOT know our story. Since more than half of my mom life has been consumed by this Ugh, that is pretty amazing. But now that it is in the background, we can leave it there. Cautiously. Alertly. It takes very little--a headache, a wave of dizziness--for us to be on high alert again.

It isn’t gone. It is still always there. THIS is why  zen work is so hard. This is why metanoia, that change of mindset, can be impossible to grasp at some days. Ugh is not an excuse, but  the Ugh is the context for everything

I can't help it, I'm a teacher, I have to repeat the important parts--and in life, even without Ugh, context is everything.

If you are carrying/dragging/keeping a side-eye on Ugh of your own—know you are not alone. 

Everyone has some kind of thing they are carrying—maybe not as big as catastrophic illness, maybe bigger—maybe the loss of someone you loved. People carry chronic illness, mental illness, stress, financial woes, strife in the family or workplace. We are all carrying ugh.

Be gentle with yourself. 

Be gentle with each other. 

Let’s keep movin’ right along together. 

As this is posted, we are en route to the hospital for MRI day, to see if my daughter’s tumors remain stable. Last time we had MRI day I stopped writing altogether for months. This time, as per my sister's advice, I wrote this blog ahead of time, as my mind goes towards our impending hospital trip. Even today, two weeks before our actual trip,  I can only write about ugh. 

And that’s ok. That is real. That is the context of my life long road trip—and I have to just keep practicing being at peace with it so I can keep movin’ right along.

How do you manage through the difficult stages of Ugh in your own life? Would you add any other stages to my 5 part staging of Ugh?

Stay strong, friends. You are not alone.

Tchotchke Galore

If I was a drag queen, or a film noir star, my name would be Tchotchke Galore.

Sadly, I am neither. But through the last 13 years, tchotchke have helped me when I couldn’t focus on much else.

For my non-Yiddish-using friends, tchotchke are little decorative things of small value—knick knacks, bric a brac, etc. If you are a minimalist, or a hard-core Marie Kondo protégé, the tchotchke galore path to zen is probably not going to be one you would take. You will take one look down that cheerfully cluttered path and quickly dive back into the most recent issue of Simple Things.

I love Simple Things, too.

I love all the things. 

I am very much a visual learner—so SEEING all the things helps me stay on track.

When my daughter was first diagnosed with brain tumors, she was 6. It was the week before the start of 1^st grade. She went from a sassy diva playing Candyland with the PICU nurses to a very, very sick oncology patient overnight. Literally in 48 hours we went from normal to watching our child come out of brain surgery. We were rattled to our core, our entire family.  The first three or four  months, as G dramatically lost vision, developed severe OCD related to her tumor growth, endured weekly chemo at a hospital 2 hours away, a chemo that had her up every day at 4 am FOR THE DAY, struggled terribly with school and at least one teacher who didn’t understand that her behavior was NOT a “character issue”, but rather a @#*#^@^ brain tumor ravaging her brain…well, those first months were brutal in a way that quite honestly shakes me even as I type it here. Sigh.

Good thing I am over it. *cough

I could not focus on ANYTHING.  I had two other children, a 9 year old and a 2 year old who needed me to be mom, and I went through the motions of life, but barely. 

Early on, I needed a tangible, visual focus to help me cling to sanity. I dug out all my gray embroidery floss and learned how to make a friendship bracelet from my sisters (several were teens at the time), and I sewed the word HOPE in beads on that bracelet. 

I wore it until it disintegrated. Then I made a second one, and some that were just plain gray…

They still live in my nightstand.

I know it is hard to read, sewing letters on a friendship

bracelet is not as easy as one might think.

I needed HOPE to be VISIBLE to me all the time. I needed it on my wrist, like a quarterback keeps track of plays.  

I moved on to silicone bracelets that said “G-FORCE!” on one side, with G’s trademark smiley faces, and “ALWAYS HOPE” on the other. I wrote out scripture verses (Jer. 29:11 was a favorite) just to keep in mind that even though I felt so very, very hopeless…especially as G failed chemo one, and then did a year of chemo two and had a new tumor show up, and then started chemo three, which just blasted her system…and then learned that maybe her tumors had gone malignant and our timeline was going to be dramatically shortened…and THEN got a reprieve, a miracle of “nope, just a weird NF thing” after a biopsy, so we got to restart chemo #3 …

I needed some hope.

I needed to see it when I could not bring my mind to it.

Having a visual reminder kept me going when I could not just think of hope.

Through the challenges of the years following the first 2 horrible years, including many progression scares, actual progression, and another few years of chemotherapy,  visual reminders continue to help me. For years and years I carried a little booklet about Human Suffering with me, and never got past the first few pages (it might STILL be in my hospital bag). I just couldn’t focus. But a pin that says “Brain Tumors Suck” or “No One Fights Alone”? That is weirdly empowering, at least for me.

Now that we have a little space from the worst of things, at least for today, I have a few new pins—one says “Chose Hope over Fear”…and the other says “Kept Going”.*  I have a bracelet that says "It's not a sprint, it's a marathon".  Some days, seeing those reminders—that I DID do these things, I did keep "running",  even if barely, or only because people dragged me along—just seeing that helps.

I have a necklace that says “Hope is the thing with feathers, which perches on the soul, and sings the tune without the words and never stops at all” (Emily Dickinson).  I wear it ALL THE TIME. All the time. (Thanks, Zulily).  I almost need a line item in my budge for “inspirational stuff”. On bad days or good days or any day I need that reminder of the tenacity of hope (a lot of days, glad it’s a plain silver necklace) I wear it. On my nightstand I have a little rock that has the word “Hope” engraved on it.  On my china cabinet I have a tile that says HOPE, which a fellow brain tumor mom made for us at family brain tumor camp.  

Visual reminders help when I just can’t get my brain around thinking about hope.

Somehow, the tangible reminders are little tiny anchors in my day, holding me to the path I am desperately trying to stay on.

So if you are in the thick of whatever battle you are in, big or small—maybe find a little visual reminder to yourself, using whatever word or idea empowers you most in the moment. Write it on an index card or post-it (I am the queen of post-its, to my tidy husband’s chagrin).  Find it on a pin or piece of jewelry or a tchotchke at Hallmark. You might be surprised by how much it helps.

What sorts of visual HOPE/Strength/Endurance tchotchkes have you found that help you? I am always looking for new ideas.  

I think I might wear one of those old gray bracelets today…

*These pins are from Emily McDowell Studio www.emilymcdowell.com –she has some fantastic stuff(some of it uses language not everyone may be comfortable with, just as a n FYI). 

What the Heck is the Convoy of Zen?

So what the heck IS the Convoy of Zen? 

In my day job, I am a high school history teacher—and my students know I am a beast about precision of language, which is kind of funny since I am being pretty free in my application of the word “Zen”. 

When I reference Zen I mean the fruits of traditional Zen meditative practices: peace, thoughtfulness, working with intention, acceptance of the present moment.  In my usage, zen (lower case) is mental space, freedom from anxiety—basically the opposite of my normal spastic freak-out default mode.  I have zero success meditating (Z.E.R.O.—my internal voice Never. Shuts. Up.), but the simplicity and “being” of Zen practice make sense to me within the framework of the religious tradition I live by (Catholic—I have not had much success with Catholic meditative practices, either, and by not much I mean super close to Z.E.R.O. Urp.). 

                               *Zen = Not Perpetual Freak-out Mode*

In my one brief and awkward stint with therapy the counselor suggested exploring mindfulness, and I scoffed pretty massively. SCOFFORAMBA galore. 

We were in the thick of medical things then; now I get that I needed a little space outside of day to day medical crises to realize that accepting things and just working through that acceptance is probably healthier than the denial/rage/spastic creativity approach I tended to take to deal with the marathon of aggressive low grade brain tumors...

 (“You need a song about chemo? I CAN WRITE YOU A SILLY SONG ABOUT CHEMO, GIVE ME THIRTY SECONDS”. We were legit the Village People of the oncology clinic, silly hats, hand motions, and all).

But in the middle of everything, I could not do mindfulness. I wanted things to be fixed/better/not a catastrophe every other second.  That is what it is.

(Side note, therapy is a super useful thing and I really should have kept going more than like, 3 times.  Some things really require professional help. I will um, add that to the zen list. Yes. Ergh....)

---------->ANYWAY, keeping up the near frenzied holding-it-togetherness of those years proved unsustainable once the dust settled and I had to actually process “What the Heck Happened Here?” and more importantly, “Now What?”

I also tell my students that history rarely works as a strict chronology. Timelines are a tool, but one little line with date dots does not a history show. History is much more of a tapestry or web, interconnected fibers crossing and recrossing and affecting the paths of other fibers…

My own zen trek is kind of like that. A little all over the place, but ultimately moving forward, hopefully.

Remember those old Family Circus comics where the kids would march all over the neighborhood and leave a little dotted line trail criss-crossing everywhere behind them? THAT is what it’s like.

So as I try to put all this into words, I ask for patience and an awareness of the tangly wiggly all over the place-ness of how I am figuring this out. Ideas overlap. Some things I have discovered very recently have been so helpful I WISH I had started them earlier, so I will reference them earlier (Bullet Journal, I’m looking at you).  Some things will take longer to flesh out.

I make zero claim to having any deep insights—I feel a little like an ancient explorer discovering a new world in which an awful lot of people already live. Uh, yeah. “Discovery”.

If you already live on the islands of zen I am just learning about, Hello! Glad to finally get here! Let’s have an umbrella drink and enjoy the possibility of sunshine! If not, I hope you enjoy the exploration, too.

Movin’ right along really is better with friends. Thanks for jumping in the figurative Studebaker and coming along for the ride.

Serious Side Note: If you are seriously depressed, or really struggling with getting through each day, please talk to a doctor.  Please talk until a doctor can HEAR you and help you figure out a plan. These ideas here might be helpful, but a lot of them only helped me AFTER I talked to my doctor.  That is another story for another time…but take care of you.

Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste 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.

Sorafatastrophe, or the 4th Worst Day Ever

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.

We've almost made it! thank God, this has been way less fun than I anticipated.

May 28

From Caringbridge (and sorry, these recent ones mostly are. I just have nothing in me to elaborate much further).


Hey, all.

Tumor Battle 2012 has commenced

At 6 a.m. G swallowed her 3 pills and started smiting her tumors. She was pretty upbeat about it once she realized she could swallow all 3 at once. Then she & Dave went out to get First Day of Chemo Bagels.

This led to a cheerful bopping about singing of “first day of chemo bagel…la la la la la …wooo!”

Sigh.

Please pray that the side effects are too yikes. I am going to stay at school after my classes until the end of the day just in case she needs me. This is my plan for the near future. I’m also hoping I can then keep most of my schoolwork to school, and leave home to home.

At least she was really perky when she left today.

There is some relief in starting, I guess.

I didn’t sleep at all, I knew I had to be up by 6, so…I kept waking up and waking up and waking up all night. Then one of the pills dropped on the floor when I was opening the bottle, and the dang thing rolled…the sight of me & Dave crawling around the kitchen floor searching for the tiny investigational drug that was so hard to get and likely is not supposed to be dropped onto a kitchen floor and lost ON THE FIRST DAY! Ack. Dave eventually found it…

Dose 2 will be around 5:30 today…G can’t eat for 2 hours before or 1 hour after, so that might be tricky, but …Game Face is Now On.

Here we go…

Peace,

k

Game Face On...Tumor Battle 2012 Begins
and if this teaching thing doesn't work out,
I am going to start a motivational t-shirt business

And so it was.

We got into the routine of it pretty quickly, this Sorafenib thing. I got pretty good at explaining it to people, this trial drug. We bought G all sorts of soft shoes since Sorafenib can be hard on the hands and feet. Weird, right? G hated the fast after snack in the afternoon, the odd timing of meals AROUND chemo. I felt constantly on edge of “don’t forget!!”

Rosie had a stable scan, we had many epic trips to Philly…and G slogged through. She tolerated the medicine really well,mostly. She was so tired, but generally ok.

Until the President’s Day session at Camp Sunshine.

She just wasn’t herself, she was refusing food, falling asleep randomly (like to the point where she was scaring the other bt moms.)

BT NOTE: If you are freaking out other brain tumor parents with your brain tumor kid, you know you are in Deep, Deep Yikes.

We nearly went to CHOP over it, but then G perked up a bit. But generally she was so tired. Her feet hurt. Her limbs cramped. She was exhausted, and just sad. She would lie in bed and worry in the mornings, instead of getting up to go chat with Grandma next door.

Reading through these entries on Caringbridge hurts my brain so badly.

G is still struggling with fatigue—I have come to understand that weekends are just sleepy times for her, she pretty much lay in a heap all day; the last 2 days her feet have been more sore…I can’t SEE why, I believe that they hurt more, but there’s no new blisters I can see. Her ears are a mess…I didn’t realize how bad they were because of her hair, but eek…they are like peely reptile ears. My poor G. Lotion does seem to help. Sorafenibed again!

That said, we were talking about NF the other night, a little friend from our slide show above just started chemo this week, the same one G started with back in ’04…so the girls had questions, and I apparently have some level of PTSD. Urp. But Rosie wanted to know about NF1 and NF2, which was worse…trying to explain genetic variability to a 9 year old is a bit tricky…finally I got to “some people have NF badly and some have it not so badly”. G piped up, “I don’t have a very bad case.” Rosie jumped right in, “I hardly have it at all!”

Genna has multifocal diffuse inoperable brain tumors, a vp shunt, vision impairment, learning challenges, and she’s on her 4th chemo protocol. Even my sweet Rosie, who has not needed treatment, has 2 tumors in her head.

You can’t really have only a little NF.

While I managed to just kind of smile and nod, I was struck by how that moment reflects who my G is, particularly. She is so mighty. She just takes whatever comes…sometimes with fear, reluctance, and sorrow, but she takes it and keeps on going. She is so mighty…and Rosie wants to be mighty too, and I can see she is growing into that, and I pray she is spared what G has had to endure…

And then it was Holy Thursday, and time to scan…and we left for CHOP so early, and got G in…

And everything, every single hope died that day--not for the first time, but anew.

Thursday, April 5, 2012 8:59 PM CDT

Hi, all.

Today’s final score: tumors 10 billion, sorafenib zero.

G’s scan was a lot worse.

Like, even WE were kind of shocked…

So we regroup, we plan, we start again. And we beg God. We beg for mercy. We beg for what so many other parents have begged for their bt kids.

G said to me today, before we saw the doc, “Mom, I told God whatever He wanted to do was ok, if I have to stay over, or start another chemo, it is what it is”. And I took her hand and told her she was so brave…that I knew she was scared, but she was doing what she had to do, and that meant she was so brave. I told her I was so proud of her.

We have to wait 4 weeks for the Sorafenib to get out of her system…and then we will begin again, if I have my way it will be on the day that marks 4 weeks or just after…the beast has to know that we are not going down without a fight.

G took it pretty well, MUCH better than in December. She was pleased to not have to do chemo at dinnertime anymore, she asked if she could just get a port and get it over with…but no. She knows we will have a plan, likely some cocktail involving avastin.

As we drove to CHOP at 5 am, we marveled at how gigantic the moon was, so big and white…then gradually yellowing, until it slipped beyond the horizon…and I realized that song is right. The darkest hour really IS just before dawn.

All I can do now is pray for dawn.

Thank you all for praying for us. Thanks for all who texted G with jokes, pictures, random chitchat…that makes her smile. And come hell or high water, I need her to smile. She was smiling at the end of the day, our long talk with Dr. B got G some one on one time with the child life specialist, Megan. They were playing cards when I retrieved her. “That was so fun, mom,” she said…

I may or may not go on facebook tonight, to see everyone so sad is like knives in my heart, and my heart is already broken today. But thank you. I also learned I get wickedly carsick if I text in the passenger seat for 2.5 hours. Ergh. And tomorrow I can’t eat, so this should be interesting. Good Friday my fat fanny.

I knew this was coming, but it doesn’t make it any easier.

We were devastated. Our priest referred to the “economy of words” this past Sunday, and on Holy Thursday, 2012, the economy of words simply could not describe our brokenness, our fear, our despair. Sorafenib didn’t just fail. It was a catastrophe. We have never seen that speed of tumor growth, and I hope we never do again. It was horrifying, those scans.  Horrifying doesn't begin to describe it.

Our poor G…

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…

Teetering on the Edge...Again

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 24

So we were back to another “6 weeks and scan again” moment.

For the record, I hate that moment.

We officially heard from the tumor board this a.m. (the message got lost in cyber space, our doc sent it last night). We are ok to wait 6 weeks and re-scan, simply because the ventricle isn’t compromised and the other lesion we’ve been watching is a tad smaller. But everyone agreed, there’s growth in them thar hills…

Snap.

G is aware of what this means. She figured this out about 12 seconds after I posted last. Tuesday was rough, many tears, fears of losing time with friends and getting weak legs again (which hopefully would not be so pronounced. Come hell or high water, we are NOT doing vincristine again). She doesn’t want to talk about it…but occasionally comes to me and tells me she’s worried. I’m trying to be uber mighty for her, and I am formulating a game plan for whatever comes.

This is the one great advantage of the 6 week window. I have TIME TO PLAN. When Genna started treatment in 2004, it was scan-day-drive-to-Philly-the-next-day-surgery-the-day-after-that in such a state of shock…I seriously didn’t eat for about a week. A friend brought me a 3 lb bag of M&Ms, I didn’t open them for nearly 3 weeks (yeah, THAT’s how shell-shocked we were). This time, I have time.

And there is, I suppose, the slightest possibility that the growth will be slow enough that in 6 weeks we’ll gain a bit more time. The docs at CHOP didn’t seem to indicate that was a plausible possibility, but who knows?

I mostly hid from humanity, got my girls ready for camp, tried to get ready for school…I felt like September 7 was the line in the sand, we had to get EVERYTHING set by then.

And talking to people was just too hard.

G was determined to celebrate 4 years off chemo on August 24, so we did, even as the spectre of treatment hung over us. We made a feast, we got through.



mac n' cheese. G's fave.


And then we were up to the 6 year mark.

Six. Years.

I cannot believe we’ve been doing this for 6 years. Half of Genna’s life. Most of her remembered life is this...and sometimes that makes me really, really sad, and

simultaneously really, really mad. Mad at NF, mad at random illness, mad at the case of NF G got (she is in about the 1% of NF cases in terms of brain tumor severity). I hate it all.

But we are so lucky. So very, very lucky. And even though it seems like our luck is running out a bit short term, I have not given up hope on long term happiness for G. I want to set up her dorm room someday, I want to help her pick out a wedding dress, I want to be a grandma (the one with a chocolate stash, of course).

I want so much for her.

Last night we were at the Yankees game, the first inning was REALLY long (hello, 50 minutes? Egads!), and it was quite hot out. I was trying to drum up drama for G, it was a full count, 2 outs, sI said, “G, it’s 3 balls, 2 strikes...do you feel the drama?”

“No, I just feel sweaty,” she answered.

I want 50 more years of those funny moments.

I want everything and then some for G.

I want next week to not happen.

I want 6 years back.

… The last 6 years are behind us, in a file marked Survivorship. The next 6 days lead to our next chapter.

Please pray for us.

I tried to stock up on food (personal onco lesson: When Nervous About Impending Treatment, I food Hoard), casseroles, pizza doughs, easy to fix things so my family wouldn’t have to depend on neighbors for months’ worth of meals.

The waiting was awful…we felt like we were being sucked toward a precipice…

And then…

Monday, September 6, 2010 7:58 PM CDT

TUESDAY:IT STABILIZED. WE DO NOT HAVE TO RESTART CHEMO. .

We cannot believe it. We just cannot believe it. We are a little confused, still a little worried (everything is still there, the growth from last time didn't disappear, but NOTHING IS BIGGER, and that was the magic key for watching & waiting more vigilantly --3 month scans again--and no chemo.

I don't even know how to process this, we are so relieved...

More time to find a cure. More time to fight. More time. That is the most precious thing of all.

Genna didn't get it at first, she didn't understand...it's like a huge weight is lifted for now...

I will try to write more later, but I wanted to put something here...thank you all for your prayers and support. We just are so amazed, trying to accept the phew of today without thinking about the scan too much, if that makes sense. It's the same awful scan as last time: BUT IT ISN'T WORSE. AND THAT IS WHAT WE NEEDED.



Stability was precarious…but achieved. We couldn’t believe it…

And the next day, Genna started 7th grade.