Just Another Pic on the Wall

still standing! ish...

So the 3 Kings have come with their presents, and Valentine’s Day decorations are popping up in stores large and small. Most of our post-Christmas returns have been made (except for one sweater that the saleslady convinced my spouse to EXCHANGE instead of return…I guess he’ll be going back to Sears, the sweater still doesn’t fit quite right), and even the mega-stash of cookies is down to a manageable 4 Tupperware.

But my house still looks like Christmas.

Santa Claus REALLY comes to town at our house.

Ok, so it’s January. And yes, the prickle-fall of the tree is starting to become noticeable, I know that this weekend the tree and most of the Nativity sets might have to get put away. But my wall of Christmas cards is going nowhere.

And not just because the wall is kind of structurally important, I mean the cards fun-tacked to the wall are staying.

There is something about seeing all those smiling faces that makes me happy. So many of the cards this year are casual snapshots or collages of family pics. Ours certainly was, mostly because I couldn’t get all 3 kids and dog to look in the same direction in any single picture. I love seeing these moments in the lives of people we hardly ever get to see.

To quote that Master of Verbiage, Billy Crystal," You Look Mahvelous!"

I have mentioned our shrunken social circle before (like shrunken heads but not grotesque, just unusually small), between family moving away and friends moving on and our own post-brain-tumor reclusiveness combined with kids getting older and thus busier, we are like Hermits of Suburbia. So getting those cards full of pictures of people we never get to see is a joy.

Some folks on the wall are family far away, some of whom we haven’t seen in years, but we  always vow that We Will Get Together With This Year! Some are old friends from college and before, with kids galore that all look like mini-versions of their parents. Those cards are cool. Some are friends we have only briefly met through brain tumor or NF work. Pics from the beach, on Santa’s lap, on trips or in the yard…the lovely crowdedness of the wall just makes me happy on these gray January days.

I know, too, that this isn’t REALLY like having contact with people…my wall o’ cards is reminiscent of the concept of facebook “friends”, the 400 people you allegedly are close to. But you know, those facebook friends (ok, not hundreds, I admit there are folks on the friend list who are more connections within the support communities we lurk in than friends), a lot of those facebook friends ARE real friends, people I know are there for us at any hour of the day or night (the benefit of having friends in other time zones, it’s always daytime somewhere!). So my card wall is maybe only a point of connection, but it makes me inordinately happy…like a little “hey, we didn’t forget you, and you didn’t forget us, even if we never see each other! Huzzah!”

That said, I do have some guilt, as I realize that my mental card list never fully translated into my ACTUAL MAILED card list. I have about 5 people I feel awful that I never actually MAILED THE DARN CARDS TO, I don’t know what happened, I seriously still have those cards here—to Deedy, and our Lake George friends, and other bt/nf friends…sigh. I am sorry. Maybe I will wite-out the “Merry Christmas” and put “Happy Groundhog’s Day” on our cards and mail them in a few weeks.


ok,  I figured out the issue I was having with photo uploading.
So  behold, a picture of Wite Out!

Heck, if I did that on the wall…just taped over the holiday greetings with seasonally appropriate woohoos, that crowd could keep smiling at me all year, right? ;)

So thanks, card sending folks, there is particular joy each time we add another pic to the wall…for in each of those we feel a little hooray from each of you. And the wall of the Hermitage is looking pretty snazzy.

 

 

 

Reviewing the Situation

8 years. Sigh. And still  that smile...

Text.
Context.

Subtext.

In the weeks following Miracle Monday, I’ve been sifting through completely foreign feelings and ideas. Good news of that scale has NEVER happened to us in oncology world. Only a few days after the scan, I started waking up with questions about what we had seen, what did it mean, how did this happen?
August has not traditionally been a super awesome month at the Casa Camiolo. G remembered the other day that it should have been her “done with chemo” 6 year anniversary…if um, she hadn’t had to be back on chemo again.

Last year I read a book about teaching history in which the author (Bruce Lesh, “Why Don’t You Just Tell Us The Answer?”) talks about having students DO history instead of just being fed dates and facts and yawnfests of boredom. Primary source analysis is one way that Mr. Lesh suggests that students can DO history, and he suggests 3 handy points to consider.

Read the Text. What does it say? (Diminished mass, decreased mass effect, diminished enhancement. Words that do NOT get old).

What is the Context? What facts surround the writing of this document? (TUMOR FREAKING EVERYWHERE. Eight years of roller coaster, more down than up, except for some shaky kind of horizontal kind of leaning over parts. Ahem).

What is the subtext? What is implied, or what is the tone, what is NOT said but said? (this was so much better…how much is so much, really, in the big picture?).

I realized that we compared the scan to May, which was the baseline for this protocol and which I had heard was essentially identical to the tsunami of woe scan that we had in April. I refused to see the May scan, an epic first and a vague attempt to not completely descend into despair.

So I asked about our subtext, how did this scan look in relation to December, the scan that started us back on chemo? What was it NOT saying?

This scan WAS a bit better than December, our doc remembered that and then we checked together when the girls and I were next in clinic. This is a relief.

I am so grateful, so grateful for this time.

I am also aware of the context of this wondrous news…we are a little better than December…which leaves us still with a massive amount of tumor.

This does not diminish the wonder of that day. I still thank God EVERY DAY for this blessing, this time, this time that equals hope.

I think…I only just started seeing people again, I am getting back towards school and now I am running into folks who have prayed for us for so very long, people who are SO HAPPY for us, and I am so happy too…

Is it weird that I feel like I am misleading people or something by not adding in “we still have massive amounts of tumor?” I don’t want people to be like “whaaaat?” if things turn again, or something. I know, I am a psycho.

I feel like there is a tiny asterisk that accompanies my happy, and that is bugging me, but I know that in truth most folks didn’t really know how bad things were, most folks don’t really know the scope of things, largely because it’s all insanely complicated and depressing and I am ridiculously shy in real life, so I just make sarcastic snarky commentary instead of real conversation.

Knowing that chemo is working is AWESOME…the text! Context…chemo inherently stinks. Subtext…the unsaid…now we can continue doing this chemo. It’s not like G is all better. And I know how Avastin can sometimes work…or not…but today it IS working and I am clinging to that.

So we find ourselves in an interesting spot. The initial intense shock over our good news has passed, leaving behind a gentle almost-optimism (which is near crazy talk for me, I know you all know that). I still have to follow through on a few of my bargaining with God things, but I am glad to say I have continued to try and make healthy choices for me in other areas (ie no more reading the Blog of Insane Lies About Health. This one actually does take some willpower, righteous anger is often preferable to terror over our medical reality. Ahem.) I am making progress, in teeny tiny increments.

People are so happy for us, and I am too. We have time, and time equals hope. That day, August 6, will ALWAYS be Miracle Monday for us. I needed that pep in my step to get through the half marathon we signed up for in 2 weeks for NF Endurance. I needed the cloud to lift a bit so I could try and focus on the courses I’m teaching this year. I am so grateful for this reprieve.

I think I am just a little scared of happy.

Tomorrow is our 8 year mark. And that, all those years, just…everything…that’s context that weighs heavily some days, even as we feel the sun of hope on our faces.

Eight years ago everything in our world changed forever. Everything. And I am so grateful that we still get to fight.  September 1 starts Pediatric Cancer Awareness month. A lot of my friends don't still get to fight, their battle now is to keep going and to cling to the hope that they will be reunited with their children some day.  I am grateful for time, even as happy scares me.

Fear or not… I may not know how to do happy all that well, but I can do grateful.

And grateful can carry us an awfully long way.

There is no charge for Awesomeness...

photo evidence of a Random Act of Chocolate. A pb cup the size of my hand.

In the annals of my personal whatever, this has been A Week.

Yes, it’s only Wednesday. Yes, we’ve had weeks with brain surgery and epic yikes. We haven’t been THERE this week, but... this week just hasn’t been Super Dee Duper (sorry, Barney).

So I decided to blatantly borrow from a recent Gretchen Rubin post on her Happiness Project facebook page, in which she talks about little bits of awesome. You know, those little things that just make you inordinately happy. Here is some of my list:

• A flower growing and blooming in a sidewalk crack.
• Being barely awake in the a.m. and hearing the chug chug chug of ye olde Farberware, indicating my spouse Made the Coffee!
• Forgetting to eat breakfast and finding it is Someone’s Festal Day at school, so there’s crumb cake in the teachers’ room!
• The first night I see fireflies in June.
• Veterans riding in open cars at parades.
• Finding a favorite out of print childhood book at a rummage sale (remember Seven Alone, anyone?)
• Anything with a wild 60s pattern on it.
• Sticking my hand into the pocket of a jacket and finding $2 I forgot about.
• Having this moment happen just as I realize I am approaching a Dunkin Donuts with a drive-through.
• Any time a stranger or person at a store just randomly smiles at me.
• Going to the library for ME books.
• Having the perfect comeback when someone is being a cheerful pain in the neck.
• Perennials.
• Seeing my son get a hit in baseball as I’m praying “God, I know it’s not a big deal in the larger picture of life, but if A could get a hit right now that would be awesome.”
• Seeing the aforementioned son be a nice big brother and join his 8 year old sister in a rousing version of Just Dance’s Spice Girls number.
• Little random countdowns from my 8 year old written on any surface she can find. Today’s countdowns include Mom’s Birthday, My Birthday, and Daddy’s Baptism Day.
• Hearing my middle child laugh in her explosive giggle.
• Laughing with my sisters.
• Laughing about wildly inappropriate things with my sisters.
• Ok, any time with my sisters.
• Having my godson run to me and give me a hug.
• A Random Act of Chocolate.
• Potatoes.
• French fries (aka happy potatoes).
• Watching clouds float by.
• Seeing a ridiculously large bird like a heron or turkey up super close in my yard.
• Puzzles.
• Sticks furniture at my favorite gallery in Lambertville. Or anywhere, Sticks is happiness for me.
• Anything drawn by Tomie DePaola.
• Finding a book by Tomie DePaola at a rummage sale.
• The moment when a student says,bubbling with excitement, “So we were at this nursing home in DC, and I realized the lady I was talking to was old enough to remember the Civil Rights movement, so I asked her if she had been to the march, had she met Dr. King, and she said YES!” right after our unit on the Civil Rights movement.
• The moment the overture begins at a musical theater show. I always get ferklempt at the beauty and anticipation contained in those first notes.

Once you get going, it’s hard to stop. My list of awesome doesn’t fix all the ugh of this week in progress, but it does help. What would you add? What are your moments of awesome?

I have to run the dancing son to physical therapy and feed the hungry girls...real life beckons. But I’d love to hear YOUR awesomes.

Movin' Right Along...again

I would like to say I have blogged reams in the last months and that some mysterious blogosaurus simply consumed the posts, leaving nothing for anyone to read.

I would like to say that I have filled screen after screen with witty commentary and reflections on my fascinating existence.

To quote Groucho Marx, I would like a trip to Europe.

If I had ruby slippers I could tip tap tap them together and voila! these wishes would become reality. I do have a pair of exceptionally cute red shoes (ok, maybe more than one pair. Maybe more than 2…ahem), but none of them seem to possess the key wish-fulfilling properties of ruby slippers.

Alas. But I am resolved, as much as I ever make New Year’s Resolutions—which is never—to actually try to put some words in this blog on a regular basis, even if a roaming blogosaurus threatens to devour them, and even if I have nothing witty or fascinating to say. Red shoes optional.

My one true resolution for this year is to work on being happy so I can be a real support to my children, the ones who have something to truly put happiness in peril. My spouse asked me the other day, in response to me stating a need to avoid an annoying conversation (oh, the holidays!) by going to my “happy place”, “Do you even have a happy place?”

He was kidding, but I, of course, was utterly crushed. (I haven’t made any resolutions about melodrama, so I figure that was an appropriate response.) He’s right. I have to re-locate my missing happy place. As part of that, I need to keep writing. Writing keeps me from hiding under a rock, or the bed, or anything I can manage to fit under. Writing gives me the path to FIND the happy place, because if the words get all glommed up inside me, I can’t navigate a path out of myself. Does that make sense? Silence becomes the rock for me to hide under.

I’m not sure if that’s deep or cheesy, but hey, that’s the vaguely self indulgent perk of a blog, walking the deep/cheese line.

Seriously, I may be brief, or silly, or just meh in this blog, but I am determined to not let 2011 roll over me until at least February. “Movin’ Right Along” was NOT supposed to represent the Steam Roller of Life working its inexorable progress over my formerly 3 dimensional neurotically creative self. I need to reclaim progress, live my life (instead of letting life live me), and WORK at happy.

As inspiration, I am using Gretchen Rubin’s The Happiness Project as a handy reference…I highly recommend this book, it’s a really entertaining and insightful read, and at least for me, I felt like GR was talking out of my head sometimes, which was both unnerving and endearing at the same time. Check out her facebook page for a great community of people who are thinking Happy is a good thing. : )

Carpe 2011!
Peace,
Kristin