Baby Steps

So, I have returned.

Thank you to all who were so encouraging last week about my return to wordsplosionness. I do appreciate it more than you know. Seriously. Thank you.

And I have learned, in the last week, that as soon as you decide to Let Go of the things that bring you to constant yikes, those things SWARM like locusts upon thy house.  We had locusts in Jersey this summer. Nasty, nasty, nasty. Thank God our house is in a former corn field, 17 years ago there were few trees here for locusts…but we know by the end of the locust fest they did find our yard.

Note to self, move from this location before 2030.

Anyway, yes. I have been trying and trying to keep SAYING my non-resolution resolutions, just to remind me (and sadly, anyone within earshot) what I am trying to do. Be creative. Be with the people I love. Don’t get sucked into stupid. Breathe. Appreciate each moment.

So this has been a week of baby steps, and not just because it was super icy and walking the dog was somewhat like waterskiing.

But I have had a few little moments, and in an attempt to not just sink back under the swampy whatnot, here they are.

I have run just over 6 miles this year! Yay! And it’s still January!

(ahem. Normally I can’t say that until June. ;)  )  I know that whatever I decide in terms of running this year, whether I go for ½ marathon #4 or not, I will be WAY more peaceful about it if I try to keep up at least a 5k a week. I won’t have that despairing feeling of “aaaagh, I need to start again!”.  If I can keep up 3-6 miles a week, when I have to start adding distance in the late spring /early summer it will still stink (realities, people), BUT I will have eliminated the first and extremely daunting mental hurdle.

I tried a new recipe last night, a breaded pork chops with a creamy sauce that I found on All Recipes and tweaked for my family’s taste (ie no cream of mushroom soup) .

 I think my spouse may have licked the casserole dish clean when I wasn’t looking (because he knows I rebuke him if I catch him doing that). My picky girls liked it. The teen son inhaled some and went back to Xbox, I figure that means he liked it. Even the dog liked the speck we gave her, but she eats poop, so her vote doesn’t really count. But this one was a tasty little moment, and I felt good about taking the few minutes to look up something new.

  I signed up for Pinterest.

I know, how could I NOT have already done this? I guess I was intimidated by my impressions of Martha Stewart-esque creativity I can’t even get organized enough to look at, let alone replicate. And I know  myself too well, adding a way to waste more time is likely not a good idea for me. BUT I am thinking that if we avoid disaster in the next few months (truth alert: kind of terrified about the next few months) we will have a Big Birthday To Celebrate here, a Big Birthday that falls a month before a Big Survivorship Date.  I am afraid to even speak that, I know how quickly things can change. But I am trying not to live in the fear that is our constant companion here, I am trying to hope. And in this case, hope means pinning pink animal print sparkle party ideas. Did you know you can just put festive duck tape over a water bottle label and then your party bucket of water bottles looks super festive??  J

In the same vein, I applied for an Icing Smiles cake for this Big Day. I was reluctant and afraid to do this, but then decided to just do it. Baby steps.

As a side note, I have always been very Sweet 16 is overrated, making an extravagant HoodlieHoo about it is just silly. But in onco land, EVERY FREAKING BIRTHDAY NEEDS AN EXTRAVAGANT HOODLIEHOO, and for whatever reason (maybe because Scan Days Cometh?) I am just embracing that this year in a different way.

I have made a few specific attempts to not plummet into crazy psycho lady at the drop of a hat.

Yeah, it isn’t all glowing cotton candy and sparkly DIY photo booths here. I am trying and trying to be more patient, to breathe before responding, to just let stupid go. I know some discussions are NOT helped by facts, so really, stepping away is just healthier. I know my G can’t help freaking out about schoolwork,  I just need to breathe and have her read the 9 pages of English textbook out loud so I can explain things to her as she goes along (thank God I teach US I, that’s really helpful for G’s American Lit class).  I am trying (try. ing. ) to stay peaceful with the more sluglike attributes of a college student on winter break in my house. (ok, WAY still working on that).

This morning we had an unexpected day off from school due to the ridiculous wind chill, and my girls came into my room (I saw zero reason to get out of bed early) and my G sat on the end of the bed, and R curled up beside me so she could reach the dog curled up by my leg (no. we do not let our dog on the bed. Never. Um, nope. Not at all. *from Chapter 3 of Oh How the Mighty Have Fallen for this Furball). I realized how pretty G looked in her pink pjs (the child can wear ANY color), and how lucky I was to have such a sweetie as my R who wants to come curl up by mom still… 

It is a work, being positive. But geez, the dividends are pretty awesome.

 

And p.s. wrote a blog entry (however anemic) within a month of the first “hey I am going to blog again” entry. Win! ;) 

So...Now What?

May 31


So today is the Last Day of Brain Tumor and NF awareness month.

Tomorrow it will be like this whole ugly business never happened, especially if I go and blog about something like Jersey humidity or what kind of cake I am craving.

That would almost always be yellow cake with buttercream icing, just as an fyi. As much as I love chocolate everything, I prefer yellow cake. You’re welcome.

So, now what? Now, you few brave souls who slogged through this tale of woe, now you are left at June 1, the summer shining not too far off. You also are probably totally like “HOLY CRAP, no WONDER she is a terrifying Jersey-girl-snark-attack-amazon-beast woman most of the time! She used to be so timid!” as you look for the nearest emergency exit. Heck, that’s how I feel after writing this for a month.

Even I didn’t totally realize how bad it was, these last nearly 9 years. Yeeks.

You do whatcha gotta do, you know?

G, May 2013

And once you get past establishing that yes, you are out of range of my scariness, you are probably like, so now what?

Well, I heard on Oprah radio this morning (don’t judge), “pain brings purpose” (it was an interview with Fran Drescher, she was talking about surviving cancer). I know for our family, pain DOES bring purpose. The two times I ran half marathons were fueled almost entirely by my anger and pain. And Clif bars. Ok, and hazelnut coffee. Our Coffeehouse gives purpose to our pain. Dave jumping in the Atlantic for Camp Sunshine is fueled by the pain that gains us entry to that remarkable place (and gratitude for the lifeline Camp has been for us). We’ve sold bracelets and chocolates and random tchotchke to help fund research for a cure.


R, May 2013



For us, DOING something makes us feel less like victims of NF and low grade brain tumors and more like recruits in the ongoing struggle to make these things STOP hurting people we love.


So…what can we do?

Well, we try to support groups doing research. The Children’s Tumor Foundation (www.ctf.org) is a good place to start, and the NF Endurance arm of CTF has been our go-to fundraising thing for the last several years. Come run with us. Ok, rephrase, come run with Dave, come “run” with me (I run /walk, using the Galloway method of surviving races, manage to do the Philly half in 2:15 this past year).

CTF also has NF walks around the country (if you don’t even feel confident “running” like me…although confident has never been my problem).

The NF Family Association at CHOP provides support and information to NF families who are patients at CHOP. This is a new organization, and I am really excited to see what they are going to be doing. This is sorely needed at CHOP. You can find the NF Family Association on facebook.

The Pediatric Low Grade Astrocytoma Foundation ( www.plga.org ) specifically funds research on low grade brain tumors. This amazing organization was PARENT initiated (talk about giving pain a purpose!) and has made huge strides already in understanding and targeting low grade tumors. There are many NF applications to the work of PLGA, and I think we will be looking more in this direction in the future.

PLGA sponsored the sorafenib trial; while the trial was a disaster (I believe it closed within a few weeks after G’s catastrophic scan, other kids had similar yikes), the fact that this organization is funding low grade specific therapies so fast is amazing and a great sign of hope. We have no regrets about trying this experimental drug.

We also try to support the places that give us those lily pads, those moments of hope: Ronald McDonald Camp, www.philarmh.org , Camp Sunshine, www.campsunshine.org , and the Friends of Jaclyn, www.friendsofjaclyn.org , Caring for Kids with Cancer. These make Genna’s life happy. We support them (and you can too). The Children’s Brain Tumor Foundation, Supersibs, the Race for Hope folks at the Brain Tumor Society, the 46 Mommas Shave for the Brave… all of these have meant a lot to us in our journey.

So we try to give back. I’m not going to lie…this journey is long, and sometimes the dull ache makes jumping in very difficult. Those awful pain moments provoke me to do silly things like sign up to run 13.1 miles all on one day. The dull ache months are hard to overcome. But we have to try and keep moving. We aren’t alone in this, you know.

And ultimately, we are so grateful. Even as we have lost so many friends (even within our own family), we have gained so many in the NF and brain tumor community. We have experienced amazing love from people we’ve never met. We’ve come to understand that God is always with us, even if sometimes it seems like we are alone. We have overcome our fears and tried to parent in a set of circumstances no “What to Expect when You’re Expecting” book even touches.

We have lost too many children to NF and brain tumors. For them, we have to keep going.

For them, we have hope.

For our Genna, and our Rosie, and yes, my husband Dave, we hope.

To quote one of my favorite singers, Sara Groves, “hope has a way of turning its face to you just when you least expect it”…

I hate surprises, but being surprised by hope is my favorite thing ever. I pray that as we enter our 9th year of brain tumor and nf struggle, that we are surprised by hope frequently…because that is a surprise we love to share.

Peace out, friends.

kc

The Cams Crew, May 2013

Life After Chemo

I am sorry today is so late.
Yesterday, we lost our CHOP friend Caitlin.
This 9 year old girl brought joy to all who knew her. For Caitlin and our other friends, we will NEVER stop working to find a cure. Please keep Meri, Jim, and little brother Jacob in your prayers.
Fly Free, Sweet Caitlin...

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 18

Life without chemo. Bizarroworld. I had so. Much. Time.

Granted, I had done NOTHING in my house for 2 solid years, so…yeah. I had a lot to fill my time.

And honestly, fear still filled a lot of every day.

G was now in 3rd grade, Andrew in 6th, Rosie was ready to start pre-K. After the hellish summer, I needed some oomph for fall.



first day of school, 2006



It’s sort of like Jaws…you know the shark is still in the water, even when you can’t see it, and yet people are Swimming For Heaven’s Sake, and that sort of dread of large submerged teeth never goes away…like the “da- dum….da-dum…da-dum da-dum da-dum” is playing and playing all the time. I’m so glad for the break, I just don’t remember how to do this kind of living. And I know how fragile a break it is…Genna keeps telling everyone she is getting 2 months off from chemo, I haven’t told her that the break could be longer…she’s had enough disappointment in life, that would be colossal, to think the break was longer and then have to re-start chemo…yikes and a half.



She has said, a few times over the last few weeks, sort of resignedly, “my tumor will never go away.” I point out that really things are pretty good, she’s in school, going to dance, she has friends and fun outside—she agrees with all of that. Still, I know I have to work harder to keep her strong, which is tricky when I’m sort of like a mushy banana most of the time.

Yeah, I did those pigtails. Be impressed.



School was a terrible challenge for Genna. One of her teachers decided that her anxiety was a character issue, and started addressing it as such. We had meetings, we argued about things, I was at the end of my rope…and G just tried so hard, she would cry about the way she was treated, and then try to be loving. Homework took hours…getting her services covered was another new battle…

And my firstborn just was a disaster in school, at least his teacher was so supportive, but concerned, and poor Rosie finally stopped sleeping in our bed every night…

Oncology stuff just takes. So. Much. Time. So much time. It’s the big secret of oncology, it just takes so bloody much time. And then off treatment, dealing with the wreckage of treatment and life with oncological yikes takes so much time.

And time is everything in BT and NF world, remember, you were supposed to make a note of that.

But there were hopeful things, too. Genna’s hair was filling all back in, she had piles of one inch long hair everywhere (one mom at baseball complimented her on her bangs…which were just new hair!). We registered for the first ever Race for Hope Philadelphia, a brain tumor race…and we called ourselves the G-force! …(that is where the G-foRce! was born) , we had signs and a big team and celebrated hope, even as I dragged G in a wagon the 3.1 miles along the road by the Philly Art Museum.

Clinic visits were a joy, just seeing everyone, G told jokes and giggled and showed off whatever new thing she had with her, and all the nurses and registration people and child life folks made her feel like a star. I felt so reassured every time we went…even though we were talking about all the challenges G was facing, all the difficulties in school, the behavior/anxiety challenges, the food issues, everything…I still felt better just being back at CHOP.



and we brought chocolate brains to clinic.
That was just how we rolled.
Note her "bangs", ie new hair.


During this time we also brought ROSIE to get her eyes checked by the neuro-ophthalmologist at CHOP, as well as Dr. B. Based on the train wreck that G’s eyes had been, we figured getting our second NF kid checked at CHOP was a good idea. Onco Lesson: If you show up in clinic with another child for a scheduled appointment, you Really Freak People Out. But Rosie seemed fine.

We ran our first Coffeehouse for a Cure for NF (adapted from our concert of the year before), our NF friend Sandra was really, really ill, but she was determined to perform at our Coffeehouse, and G loved so much to be with her. But we knew that things were really bad. Sandra had sarcomas, and there were really no good treatment options left.

NF is also a horrible, dastardly beast.

As the months passed G’s eyes improved to the point that a)she no longer qualified for any help from the Commission for the Blind (a bittersweet day, she really still NEEDED some help, but one eye was correctable to 20/30. She had no peripheral vision, and needed sharp contrast, but one decent eye means no help—I’m ok with that, really!—when watching the Preakness that year she asked the animals running were horses or cows…yeah, she still needed help) and b) we gave back the Brailler. G was cheating too much, trying to READ the bumps…

Thus marking the ONLY TIME IN THE HISTORY OF THE WORLD that I was happy to hear my child was cheating at something. 

And G had a scan that was stable, (although BRAIN TUMOR NOTE: if a neurosurgeon, YOUR neurosurgeon walks past the MRI waiting area towards the scanners while your child is IN the scanner, you WILL have a full bore linear panic attack, even if he’s not there for you. Lesson learned, Nov. 2006) …I was utterly neuro-oncologically needy, I think I e-mailed our doc 8 times, and learned this:

I am learning that neuro-oncology is a field of “ack! The bridge is burning!” …and that if no bridge is burning, things are considered ok. I just have trouble sometimes seeing around the smoldery spots, or the charred places, or the matchboxes strewn all over the span. (Nov 2006)

3 months later G had another stable scan (that time she told the nurse her name was Sarah when asked. Nice try, GENNA still had to get scanned), and then another in May, and finally, after 3 stable scans, we decided that Genna could get de-ported. She could lose that blasted port. She was thrilled, now fevers would NOT necessitate an instant hospital trip. Woo!

I was happy, too, finally, I actually felt a little peaceful…especially since on our most recent local ER trip I found my assertiveness and told a doctor we were NOT going to be admitted, that was NOT HOW THIS WORKED. Ahem.

For that day, de-portation day, we had a party.

I had been too afraid to celebrate the end of chemo, but in May in 2007 we were finally able to celebrate stability. I got a Costco membership so I could get a magnificent cake. Of course I didn’t order one (I just got the membership and walked to the cake case), so it was a God Bless America cake, which amused me since we were calling this a De-portation Party.

We were living. Stability was a nice place to be, even if the shadow of NF and those lurking brain tumors was always, always with us.

I am not Aretha Franklin. Sigh.

I am not Aretha Franklin.

Yeah, it’s a newsflash to me, too.

You see, I always, always have said that I was going to BE Aretha Franklin when I grew up.

Today I hit an age where there is no question, I am Grown Up. There is also no question that I am NOT Aretha Franklin.

Realistically, I knew that I would not magically turn into the Queen of Soul. I think I just hoped I’d get that finger wagging, slippers wearing power of Aretha in the Blues Brothers, so I could say unto the world, “You Better THINK About What You’re Trying to Do to Me”. I think I really wanted confidence and attitude and yes, a set of pipes that makes the rafters shake.

I am not Aretha Franklin.

I still can’t sing, I stood up for myself last week and had someone get all up in my timid, non-confrontational face and try to jump down my throat, and I am literally about half the woman Aretha is. So I am left, unfortunately, trying rather unsuccessfully to NOT be Eeyore this year. I have long not been a fan of birthdays…pretty much since I turned 15. That was the first birthday where I received the wonderful gift of self-loathing. The crazy thing is, NOTHING BAD happened at that birthday. My mom made a lovely dinner, I had friends over, I have NO CLUE why THAT year was the year everything first hit the fan.

It took me until I hit 35 to finally, FINALLY not be overwhelmed with ugh on my birthday. I was ready to be cheerful and eat cake. Ironically that was the first birthday that I spent the night in a hospital waiting for ambulance transport for my child to the Biggest & Best Children’s Hospital a few hours away. I remember how surreal it was to be listening to jazz on an ambulance radio at 4 a.m. while we drove down the Jersey Turnpike, windows wide open to help my daughter’s temperature go down. That was a memorable birthday. My spouse eventually brought the cake down to the hospital, we were stuck there a week…

My youngest child cannot comprehend WHY Mommy doesn’t love her birthday. Why does Mom NOT want to do anything or mark the day? I wish I had a good answer other than it feels fake to me. I don’t even feel like eating cake. Yeah. It’s like THAT. Eek!

I still wish I was Aretha Franklin. I think on these days that mark the passage of time I just get a bit whomped with the way things are the OTHER 364 days of the year. The last several months have not been a fest of hooray—and as mom/wife, a lot of the reason for that comes back on me.

There’s a song I have been listening to a lot recently, a song that says, “you are more than the choices that you make/you are more than the sum of your past mistakes/ you are more than the problems you create” …I am trying to believe this. But some days, “it don’t take too much IQ to see” what I’ve done to me. Aretha trumps all.

So tomorrow will be the first day of a new decade for me. Tomorrow will be another regular day with work and baseball and rain (and maybe then no baseball) and laundry and vacuuming I don’t get done. Life goes on.

My almost 9 year old is standing next to me, balancing a Hershey Kiss on her face and trying to roll it into her mouth. My spouse stepped in to help the 12 year old with her English homework after I totally lost my temper. Even the teen is trying to not be hideous. My 12th grade class gave me a Boston Crème donut with a candle in it. The third grade girls sang an alarming rendition of Happy Birthday to me that was quite endearing if somewhat painful to the ears. I am grateful for the many blessings I have. …I’m just not a birthday kind of gal. And that’s ok.

And you know, even in the Blues Brothers, Aretha eventually gets left behind. She has to figure it out on her own, I guess, comforted by fried chicken and a Coke. Hm. I could live with THAT.
; )

So here’s to being a grown up. Maybe I can focus on becoming Judi Dench now…


NOTE THE OFFICIAL DISCLAIMER OF TRUTH: This is a No Fishing Zone: I am NOT FISHING. I am not fishing for reassurance and comfort or anything like that. I am just saying it like it is. My bs-ometer was blown off in 2004, and now I just Say Things, which is awful but true. Imagine family holidays: Yikes! Please don’t rush to say nice things, I Know you all, you are nice people, and you will want to. I’m telling you, my brain can’t hear it on May 17. It’s just one of Those Things. So don’t worry. Tomorrow is another day. I have no problem with Leftover Cake. ; )