Giving Thanks

So it has been a year. Not just “a” year, but “A” year, the kind of year that we will likely look back on and shudder about, and wonder about, and hopefully remember at all. Stress is a powerful amnesiac.

Anyway, here are 10 somewhat ridiculous and otherwise kinds of things I am thankful for this year.

10. I am not a turkey.

Really, on Thanksgiving that is a reasonable reason for gratitude.

9. I have teeth.

Yes, I like chewing. That is why I am not a smoothie fan, I so like to chew. And at Thanksgiving there are SO MANY tasty chewable things.

8. I am not vegan or vegetarian or on a low carb diet.

None of these are the end of the world, but I am grateful on this feasting day that I am omnivorous and that for whatever reason God has blessed me with an energetic metabolism. Phew. That is a mercy and I am grateful.

7. I don’t hate football…and not just because of “when in Rome” yadda yadda.

6. I still have a house, and electricity, and heat. Not everyone in Jersey does. I am grateful.

5. For pie.

4. For all my random phobias, anxieties, and neurotic tendency to panic/overreact at the slightest provocation, cooking and baking do not scare me at all. This is a blessing at this time of year.

3. My spouse likes to wash dishes. He is more than a little OCD about washing dishes. Winning!

2. For Parades with Balloons…a delight that Never Gets Old.

1. Finally, for family, friends, doctors—sometimes it’s hard to tell where one group ends and another begins…

A year ago we were truly on the brink. At Thanksgiving we were days away from one of the worst days ever for us, and I think some part of me knew that something was brewing…and that time was only the beginning of some of the worst months ever for us. We’ve moved from shell-shocked to having some peace in this new normal (at least most days). We’ve made it through a really hard year. So for everyone who has stood with us, we are grateful.



Happy Thanksgiving, all! Now go chew something delicious. ; )

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.

The Little Pills That Wouldn't

The Little Pills that Wouldn’t

“…And the little pills said, “we cannot inhibit the kinases, not even one”, and they rolled to the bottom of the hill.

But the doctor said, “Little pills, the good little boys and girls on the other side of the mountain are waiting for good food to eat and toys to play with and extreme inhibition of their kinases, also some whomping of their vascular endothelial growth factor if you’ve got the time.”

And the little pills looked at the mountain. The little pills thought of those boys and girls waiting for multiple kinases to be inhibited. They thought of the growing blood vessels and the busy pathways. The pills pondered and thought and pondered and thought and finally said,

“Nope. We will dance the Macarena with the kinases and shower them with VEGF. They will be Kinases Gone Wild, and MTV will send us a contract for a show and the boys and girls will be famous for 15 minutes so they won’t care that big picture wild kinases and VEGF out the wazoo could be a serious problem. Booyah!” And they blasted over the mountain like they had little tiny jetpacks built into their smooth, round selves.

And that is the story of Sorafenib, the Little Pills that Wouldn’t”.
****************************************************************

I cannot fathom why I never successfully broke into children’s book writing.

I know I said I wanted to post more…and then all the words got sucked away. Alas.

But from my cave of seclusion I have come to realize a few things. While I am literally scared unprintable-less by the recent turn of events, the need to be calm for my G has become pretty much the defining feature of our days. That said, here are 10 things that are true:

1. I kvetch about the Polyfill invasion, but a giant stuffed animal is instant gratification for a kid who just failed chemo #4. Giant animal with note linking it to a much loved teacher who passed away from a brain tumor years ago…major bonus points. She smiles…Win!

2. I almost don’t need to hide from humanity, if I go out in public I’m in such a fog I inadvertently walk by people without seeing them, truly without even realizing they are there. So if I did that to you and you did NOT call out “Hello!” to get my attention, forgive me…I wasn’t shunning you. I really didn’t see you. I need one of those “Iceberg! Dead Ahead!” guys. Although that didn’t work out super great either, right?

3. But if you come to our door or call my phone…I am hiding. I am sorry. Talking is hard. Typing, less so. Even if you are carrying 2 giant stuffed animals, one for G and one for her Super Sib. Hey, Super Sib is also a Super Door Answerer.

4. Unless of course you are comparing the merits of Dance Moms Miami vs. Dance Moms Pittsburgh. Puhleeze, the guys in Miami can do pirouettes. The Pittsburgh lady screams. End of discussion. And no, I never watched either of those shows. Ever. I am just guessing. Ahem.

5. To my hero kid, there is a silver lining to even the most craptastic of circumstances. Today’s observation, she realized she can wear heels now that her feet won’t be blistering from the Sorafenib. She added a loud “ALLELUIA!” to that statement. We began looking for silver graduation shoes in platypus sizes tonight. Can I get an amen?

6. Also realized maybe we better practice WALKING in said shoes if we actually buy them. Growing multi-focal tumors + visual impairment + the much longed for 3 inch heels may = ER.

7. When I am really stressed, I don’t eat chocolate. Chocolate is for the lower colors on the Homeland Security scale, like green, blue , and yellow. Once we hit orange, like we did last Thursday…even I can’t eat chocolate.

8. Yes, I had to go look that up, I only remembered the orange.

9. Eventually I get past that and make up for lost time. Did you KNOW Amazon sells a 4 pack of Cadbury mini-eggs for only $10?? A bargain!

10. Even though we are utterly, completely devastated right now, like ol’ Rodgers & Hammerstein pointed out, we’ll never walk alone. We are so grateful to everyone pulling for us right now, and we are so sorry this is causing you all such pain. Seriously, even as we’re getting the results, staring at the screen, both Himself and I are trying to figure out How the Heck Do We Break this to Everyone…

Here’s hoping that the next book in our series rots less than “Sorafenib, the Little Pills that Wouldn’t” …

It didn’t even have good illustrations…

Tsunami of Nice

Well, we are 4 doses into Tumor Battle 2012. TB12 kind of whomped any other feeble New Year’s Resolutions I might have conjured up – and really, how many times can everyone read “this year I will write in this blog more”? . TB12 trumps all.

Only 600 some odd doses to go…if it works…sigh…

So far we are managing through
1. bedazzling everything in sight (t-shirts, chemo “diary”, anything that sits still too long)
2. avoiding all of humanity whenever possible
3. wild Just Dance parties (which are not all that well attended in light of point #2)
4. very loud playing of Green Day in the minivan, which apparently has a Killer Sound System. Nice.
5. random acts of carbohydrates
6. extreme consumption of Christmas chocolate.

And this is just how I am coping as mom!

We’ve had moments of every make and model over the last several weeks. Honestly, spending the holiday with the Ghost of Chemo Future was kind of a bummer. There was almost some relief in STARTING the process for real, after all of the nauseating ups and downs of the last 6 weeks. Laughing, crying, yelling, terror, jollity, love, hate, safety dancing…I feel like we live in a Telenovella but in English.

Even so, I really was not prepared for the Tsunami of Nice.

Since December 5, our own personal Day that Will Live in Infamy (along with 7 years’ worth of similarly woeful days, a veritable Whitman’s Sampler of Medical Woe), we have been overwhelmed by the Tsunami of Nice. Thoughtful Cards. Meals for our family (that we can freeze for hospital days). Tchotchke for G that make her smile and giggle and delight. Notes of encouragement. Random acts of chocolate (there are Cadbury enablers out there, and you Know who You Are!). Prayers. A sparkle Mary (don’t ask, but it was very heartfelt and given in love). A phone call from a Grammy nominated musician who happens to be one of G’s favorites. Hugs. Non-hugs from people who know that hugs make me cry. Text messages. Carpools. Normal things that in this oh-so-not-normal moment become hugely important to us.

A Tsunami of Nice.

We are so grateful. It’s hard to express this (again, see point 2 above), I hesitate to talk to people because I never know exactly what moment is going to be the one to trigger my own tsunami of tears. Some days I can be a medical encyclopedia, coolly relating facts & findings and whatevers, the next day, heck, the next MINUTE I am sniffling when trying to say the word Oncology. It’s ridiculous and embarrassing and whatever. And really, I know a LOT of people don’t know what to say to us. We are living every parent’s worst nightmare, and there is nothing good to say. So I hide.

But because of this, this awkwardness of communication, this painful everything, we never really get to tell people just how grateful we are for the outpouring of kindness to our family and especially to G. We really do feel like a flood of goodness is helping us float along through this massive yikes.

So thank you all…

I have learned, too, that stress makes me stupid and very unfocused. So I have a lovely pile of good intentions here that rivals the pile of thank you notes I could and should write to everyone. I just forget…everything these days. This makes for a very interesting time at work, considering I am a history teacher…but anyway, please know we are so grateful.

In all of the horror of what we are fighting – and sometimes, the reality of what this is just threaten to swallow me –but in all of this horror, we are so honored and humbled to see how each individual act of kindness and love, even from people we don’t really know, comes together to create this massive Tsunami of Nice.

We just need to try and ride this wave through the next few months, and pray that it fuels G’s mighty chemo ninja skills so she may utterly prevail in TB12.

Thank you.