Wednesday, August 29, 2012

Reviewing the Situation

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



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.

1 comment:

  1. I am so proud of you for not reading those toxic lies.'And for the amazingness of you. I can still hardly believe you RUN. Let alone for ridiculously long distances. Continuing, as always, to keep you all in prayer.