Saturday, January 25, 2014

Once more unto the breach, dear friends, once more...

It seems strange to me that I am quoting Shakespeare in the title to this post, as I usually detest Shakespeare.  I was made to memorize a soliloquy from Romeo and Juliet in 11th grade, and I've detested him ever since.  I have trouble finding life and spirit in the verse, and get distracted.  I've seen a few productions over the years, and I loved them.  But reading?  Meh.

Anyway, the quote was more than appropriate.


This is a "snapshot" of Amie that Shel got today.  I was chatting with Shel's Mom and Dad, turned my head, and she grabbed this.  Probably my favorite shot of Amie in a long time.  It's grabs her whimsy, her fun, and her impatience all at the same time. I think I'm going to print it for my classroom wall.

Anya went to Winter camp yesterday, and it was a complete opposite of last year.  She barely said goodbye to us, and raced onto the bus.  Of course it might have been because it was -1123123123 degrees outside at the time, but I'm sure it had something to do with how safe the idea of going away to this awesome camp was to her.


We patted ourselves on the back a bit today with the idea that we had raised a kid who was so willing to go away from us for a few nights into the arms of people so foreign to her. (Ed Strzalkowski would be mad proud about that).  She's obviously having such a good time there, through the pictures.  It's great to know that she's got some things that are totally for her, outside of cancer madness.

So back to the picture above.  We had a "date" today, and it was very nice.  Let me explain my use of quotes there.  In previous years, our dates involved dinners, shopping, movies, yarn stores, brew pubs, hotel rooms, etc. etc.

Today?  We had free movie tickets from a friend (thanks Kristin!), a free Pepsi from a reward program, smuggled in popcorn and water bottles, and afterward a gift card from Panera (Thanks Michelle!).  We spent a total of $5 on our date.  I swear I'm not fishing for anything here, but our combined family income has taken a wickedly stupid hit in the last 2 years.  In 2011, when I was running student council and Shelley was working 1/2 time we brought in $98,000.  This year (I just looked at my W-2), we pulled in $44,000 with my paycuts due to budget issues at my school district, not running StuCo anymore, and Shelley no longer working.  We've done an amazing job adjusting to the $54,000 loss in income, but man... it's not easy.

We went and saw "Her", which was amazing.  I loved it.  Loved.  Spike Jonze totally scores again.  The movie would be a lot to handle for many of you, but was a great meditation on what it means to be in a relationship.  Shelley and I talked about it a TON afterwards, and that's not normal for the non-moviecaring girl.  I won't bore you with a review, as there are so many available online already, but it was good stuff.

Now to the new cancer plan, and the slightly good news.

This round, now that they know the cancer has not changed, they are going to try to up the game and really attack it.  Like old school attack it.

We started every other day Vorinistat today.
We started every day Accutane today.
We will start IV Cisplatin on Tuesday, with an expected 2-night stay in the hospital to make sure she's properly hydrated.

Cisplatin is the drug that causes hearing damage.  Yep.

We had a new hearing test on Friday afternoon, and learned that the hearing damage at the highest ranges that we were told Amie had suffered has not manifested fully, and might have been a false positive.  Good stuff there.

But either way, she's going back into the big leagues of Chemotherapy on Tuesday.  She's got a damned good chance of losing all her hair again, which makes me sadder than you can even understand.

To quote Shelley tonight, "She's far more resilient than you'd ever imagine", but I still am really sad for her.  She's been talking about her hair, and growing "ponies" for so long that the idea of it all going away again is just shit shit shit.  Of course, you all agree with me and know that.


More to come in the days ahead as we head back into the breach.  Rally forth my friends!