Find Your People

So, basic math being what it is, even I could see I did not post twice last week.

I beat myself up over this for a bit, and then had to let it go. My husband was away on a business trip last week which meant I took on his half of the chauffeur duties here—no big deal, just flummoxed my schedule…and then a last minute work schedule change (which always throws me completely out of whack) and the loss of a dear friend in the brain tumor community…by Thursday night I knew that second entry for the week was not going to happen, even if all the preliminary work was done.

That’s ok. But I will get it done this week.

And really, the loss of my friend Susan inspired today’s post.

Find your People.

Sometimes, it is impossible to be positive, at least for me. Sometimes things rot. And while I can choose to work through things and stretch to be positive, sometimes you need to have your people.

Your people are the people who can hear you in your bad moments.

Your people know your journey—whether through shared experience, or blood relation, or years of friendship—they are not scared off by the hills and valleys.  They stand below the cliff with a pillow saying “ok, so maybe hold on, but if you can’t, I can probably break your fall with this pillow!”—and you appreciate that, even if you know that the laws of physics are not on your side. It’s your people. It really is the thought that counts.

Your people laugh with you, cry with you, give you truth, and stand by you when you can’t stand on your own.  

Your people have your back.

Your people pray when you just can’t even talk to God, or you have nothing at all nice to say to Him.

Your people think of you, and you think of them in random moments of the day.

Your people may or may not be folks you get to actually hang out with. In this age of social media, some of my people are folks I have never actually met—but that doesn’t matter.

Your people find the humor with you in really, REALLY unfunny things.  Oncology humor has an extremely niche audience...your people are cool with that. 

Finding your People, whether it is through online support, or your kid’s class, or your own old friends, is so critical.

My friend Susan was one of my people.

In 2004, after my daughter failed her first chemotherapy and we realized she was simultaneously losing her vision at an alarming rate, I could hardly think. For the first time I truly understood what “going through the motions” meant. We lived 2 hours from the hospital, we didn’t know ANYONE who had the same thing G had, we were utterly alone—supported by our family (so, so grateful to our family—they are our people, too, always), but in onco world we were an island.

In December of 2004 I found a Yahoo group for Pediatric Brain Tumor parents.  That discussion board became a lifeline for me.  Here for the first time were people who spoke my language—who knew about vincristine neuropathy or the grossness of Bactrim. Here were people who understood why I wasn’t all WOOHOO when we finally got a stable scan. I wanted the tumors to be smaller…stable still meant Tumors Galore. I finally found a place where my story and experiences resonated with people, and where I could contribute something other than being the Elephant of Scary Stuff in Whatever Room I Entered.

Side note, if you have something really bad happen to your kid, you are painfully aware in groups of just how much you are every parents’ nightmare, people apologize for being upset that their kid has the flu or a broken finger…which is silly, obviously as a parent you SHOULD care about those things, smite isn’t a contest, it’s ok, I am sorry your kid has the flu, too, cleaning up throw up is no joke.

But I digress, as usual.

Susan and the other parents in that group are my people. 

I found my people literally through an internet search. Yay, Google! 

Over the years, I’ve found more people, and those people still help me get through tough days. My siblings, my parents (and in-laws), my online support friends, my old friends from high school—in different moments, these are all my people.

I have a lot of trouble being BY people sometimes. Finally realized there’s a name for that (social anxiety is a thing! Egads!)—but I am SO GRATEFUL for my people, who get that about me.

Knowing I am not alone--even when I am actually physically alone-- helps on bad days.

None of us are truly alone, even when everything screams YOU ARE ALONE. Everything is a stupid liar. Stupid is not the word I wanted to use, but...keeping it family friendly, today at least. 

My friend Susan was one of my people. She was utterly authentic, always. She was fabulous and loving and faith filled and funny and smart and knew the pediatric brain tumor journey so well.  Susan was one of those first moms I knew back in the day…she was “my people” for so many brain tumor parents.

The world will miss her…but her people will not ever, ever forget her.

Peace out.

Find your people.

Movin' Right Along -- Back on the Road

Movin’ Right Along is a Muppet Movie reference. I love the original Muppet Movie so very much. When I first started blogging several years ago, as a way to separate my medical writing from other writing, I bounced around a lot of different titles (most of which were taken already) before I settled on this. Movin’ Right Along pretty much summed up what I was trying to do—in the face of a pretty devastating medical reality, I was trying to create some space and keep moving, while randomly bursting into song or terrible puns (It’s a Myth! A Myth!... Yeth?)

The way my brain works—kind of like a giant catch-all junk drawer-- I kept this blog and my medical writing separate for about 3.2 seconds. Here is where I kvetched about manipulative pseudo-science, medical ethics, and eventually told my second born’s story –an entry a day for a month, in honor of NF and Brain Tumor awareness month. Those entries are still up, if you want to read War and Peace of Medical Smite. Urp. Summing up what was at that point nearly a decade’s worth of trauma in one month completely shut down my writing for a year. 

It has been a slow climb back. 

For a long while, Movin’ Right Along in my life has meant sort of a weary dreadmill workout, or more accurately the old camp swim test where you had to tread water for a certain length of time. You knew you probably wouldn’t drown, but you had trouble just moving your feet and arms enough to keep your head barely above water.

The Whooping Cough-tastrophe of 2016, coupled with some pretty intensely bad school situations for my second born, became the final straw on the proverbial camel’s back.  Within a few months of my daughter finally shaking the 100 day cough (spasms that would leave her blue and choking for air) and graduating from high school, I knew I could not just keep treading water anymore. I had to swim for a dock or an edge of the pool or something, or I would turn into one of those creepy underwater swamp people from Lord of the Rings.

So I did. Swim for an edge, not turn into the swamp people.

I wish I could say I then rose up like Jesus and walked on the water. That would make a great story/blog. That would be a bold-faced lie, but gosh it would be a good story.

 Really I just started looking for floaties or lily pads to cling to as I work my way to the water’s edge.  I made some decisions that have given me the space to try and figure out what I am meant to be doing during this medical respite. I don’t know how long it will last. Our family could be tossed into the middle of the sea at any second, always. I know this is true. But I want to be better equipped for that next tsunami.

So in that vein, Movin’ Right Along is really going to tell THAT story—how I am trying to Move Right Along—the books that have helped in the journey, the podcasts that inspire, the practices that strengthen my lungs and my oh so tired limbs, both figuratively and literally.  I am still on the road (heading to New York to break into public television!...er, something like that. ;) ), but I am determined to reclaim the words that left me during our family’s medical crisis, and maybe help build a little caravan of support along the road…like a convoy of zen , or something.

That would be a good band name, Convoy of Zen.

I will try to keep entries short, and twice a week. EEK, putting that into writing is daunting. But I need a goal, and a deadline. I am the Queen of all Procrastinators because I want things to be perfect and can never get things perfect (life lesson)…so I need a deadline—hoping that deadline will be the next floatie I can grasp.

Please join me on the road. I am not sure exactly where we will end up (Bear left! Bear left!—Right, Frog!), but it will hopefully be a positive kind of road trip.

Movin’ Right Along in search of good times and good news,

With good friends you can’t lose

It could become a habit!

Opportunity knocks once, we’ll reach out and grab it,

Together we’ll nab it,

We’ll hitchhike, bus, or yellow cab-it!

Movin’ Right Along—footloose and fancy free!

Getting there is half the fun, come share it with me!

Movin’ Right Along—together we’ll share the load!

We don’t need a map to get this show on the road!

--The Muppet Movie (original)

Our Perpetual May

May is Neurofibromatosis Month.

May is also Brain Tumor awareness month.

I suppose May is an official month for lots of other things, too. It’s the month I was born, it’s the month of first communions and graduations and dance recitals and the official insanity of things running down before the respite of summer.

But in our house, the dual NF/Brain Tumor awarenesses become all –encompassing in May.

Spreading awareness for us means helping people KNOW about NF & brain tumors, begin to glimpse the reality of what LIVING with these two things can mean, and then hopefully help us push forward research for a cure.

Thanks to the officialness of the Children’s Tumor Foundation website, www.ctf.org , I can tell you through the magic of paraphrasing that Neurofibromatosis (NF) is a genetic neurological disorder which affects more than 2 million people worldwide. It can be classified into 3 distinct types, NF1, NF2 and schwannomatosis. They are caused by different genes on different chromosomes. NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born. NF can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation". Parents with NF have a 50% chance of passing the disorder on to their children. Children who inherit NF from their parents get the same TYPE of NF, but the severity of the disorder can vary wildly within a family. NF doesn’t discriminate based on gender, race, geography, or anything. NF is totally egalitarian about who it smites. CTF’s website asserts that “Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities. NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.”

If you made it through that entire paragraph without breaking out in hives, CONGRATS.

How did I know this BEFORE www.ctf.org even existed?

Well, in 1993, at the end of a very nice date with my boyfriend, Dave, he stood at the end of my walkway and kind of cleared his throat. We were pretty serious at that point, and thoughts of the future had crossed both our minds, I guessed. He pulled a pamphlet out of his pocket, and said, “um, I have this thing, it’s called NF…”

Well, then. Some gals get a good-night kiss to end a date, I got a medical pamphlet.

Ok, that’s not fully accurate, I am sure there was a good-night kiss, too. We were young then, you know. Ahem.

I read the pamphlet, and felt concerned and a bit confused, but I was in love, and sooooo young, and I knew that if I ever had a child who was blind because of NF (which the pamphlet told me could happen, even though Dave was fine, he just had some bumps on his skin, but whatever,), I would go all Annie Sullivan and teach the child Braille and we would Triumph Over Adversity.

Yes. I always choose melodrama. I could almost hear the inspirational music. But Dave was perfectly healthy, so the inspirational music and corresponding adversity were mostly theoretical.

Brain tumors, well, I was aware of those too, one of my classmates lost her mom to a brain tumor when we were in eighth grade, I only remember her mom near the end, on steroids and chemo and unable to really talk to us much when we brought a meal or something to their house…and I remember the day things got really bad and my classmate got called out of class, and we all knew, we just knew…

Pediatric brain tumors I knew nothing about. Low grade brain tumors, even less, although I knew my sister’s allergy doctor had had a brain tumor for years and years. . . I’m guessing now that that was a low grade tumor.

He still died.

There are many, many different types of pediatric brain tumors, in different parts of the brain, comprised of different types of cells. Some tumors are highly malignant and deadly, some are malignant but potentially beatable. Some tumors are slow growing, so called “benign” tumors because they tend not to metastasize to other parts of the body. The treatments for brain tumors include surgery, chemotherapy, and radiation, depending on the type of tumor, the location of tumor, and the age of the child. Scientists keep learning more and more about hidden variations within even pathologically similar types of tumors, variations that hopefully can be targeted in developing therapies.

Brain tumors and the treatments to cure them (oh, double edged sword!) can cause motor, speech, and cognitive difficulties, vision and hearing impairments, paralysis, and death. Brain tumors are horrible, dastardly beasts, low grade or high grade, brain tumors are horrible, dastardly beasts. And while many brain tumors are random acts of cellular yikes, brought on by no act of the afflicted, some brain tumors are caused by underlying conditions like tuberous sclerosis or… wait for it… Neurofibromatosis.

The brain tumors caused by NF tend to be low grade brain tumors—such as optic glioma, those tumors that can blind a child--which again simply means they grow slowly.

According to the Children’s Brain Tumor Foundation, www.cbtf.org (yes, the two addresses are weirdly close, I know) , 11 families each day find out their child has a brain or spinal cord tumor.

On two separate days, with two of my children, my family was one of those 11.

Twice.

Because of NF.

So May means a lot to our family, not that we are unaware the other 11 months of the year (I wish!), but in this month our NF and BT awareness reach epic overloading proportions. And this year, in an attempt to clear my own mind or make sense of the nonsensical or something, I am going to try and tell some version of our story, our family journey through NF and brain tumors, our never-ending May.

I don’t know, honestly, if I can manage it. We hit the 9 year mark this coming August, so I have a LOT of years to cover in 31 days, and I am committed to NOT writing too much more than 800 words or so each day. (stop laughing, really, I’m going to try. I know, I’m at 1300 on this one already, FAIL). MRI day is in less than a week, so…yeah. I don’t know. There is so much, so much to this journey. I don’t even know if it’s helpful for people to know. . .

But NF is so common. And treatments for low grade brain tumors (including the kinds caused by NF) haven’t much changed in decades.

DECADES.

So for May, I hope to spread a little NF 1 awareness (the variant our family has, the more common variant), a little low grade brain tumor awareness, and maybe a little hope. Because even though much of our story is really hard, really, really hard. . . we do have hope.

May is NF awareness month—and brain tumor awareness month. And I know that low grade tumors are only a subset of the pediatric brain tumor world, which is a subset of the larger brain tumor community. So I apologize for the limited scope of what I can say. For a long time I wasn’t sure we even really should have a voice about brain tumors, because my kid only had low grade tumors. That almost wasn’t sick, right?

Sigh. I don’t think that anymore.

I hope this story serves some purpose. I hope the struggles we've had can help other people who are struggling, too. I hope people understand more about these dual disasters by the end of May. And I hope that people feel some hope at the end of it all.



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

For a really amazing and heartwrenching account of a family’s journey through a high grade brain tumor diagnosis, please, please read Donna’s Story, over on the Mary Tyler Mom blog, written for September, Pediatric Cancer Awareness Month. Donna's Cancer Story

Don’t read it all in one sitting. Don’t . Really. Just don’t. But do read the whole thing. It’s so important that Donna’s story be heard. And thanks to Mary Tyler Mom for inspiring this attempt at telling our story. You don’t even know me, but you are one of my heroes.