The Fault in our Stars (don't worry, no spoilers)

Friday, June 13, 2014

A very quick introduction - - I had planned a longer one, but we saw this movie and I want to write about life as it is rather than list off a bunch of traits and tell you various stories related to them. I started blogging over at wordpress, but recently became disillusioned when I learned I couldn't do any html or cute fonts without lots of hassle. I don't know lots about coding yet, but I know I want CUTE FONTS...so I knew that meant I had to rip the bandaid stat. And here I am.

Who am I? Yikes. I don't know. An average girl in her late 20s? Let's skip that. For better or worse, the things that other people see as defining me include my profession (attorney - not the scary kind), illness (type 1 diabetes), my relationship with my husband, A (best guy ever), and the fact that A is a survivor of acute lymphoblastic leukemia (ALL). I use the term survivor even though A is still in active treatment at the moment.

(Here we are the day after we got engaged. Three weeks before the diagnosis.)

All of this transitions well into a discussion regarding The Fault in Our Stars. Seeing that movie was an interesting experience because some things hit close to home, other things seemed...well it's a movie. One thing that the movie, and every individual that I meet who has relapsed, keep in clear focus for me is the fact that while A is in remission, we aren't "out of the woods." (A and I actually used to really enjoy being in the woods in the literal sense, we loved backpacking, we probably won't ever be able to do it again, but sometimes when I see the term "out of the woods" I think about how much we'd really love to be in them.) The thing about ALL is that they expect an initial remission, 90% of patients achieve an initial remission. It's just that around 40% of adult patients relapse pretty quickly and if you relapse your odds of survival hover somewhere between 10%, 13%, the exact percentage chance depends on the study. With ALL, if you relapse, you're gone pretty quickly. Now, I really don't think A will relapse, he just seems so well, but every now and then I remember the reality that I actually have no idea. There's a huge chance that one day soon we will wake up and be back in hell again. The longer A goes without a relapse, the better chance he has both of not relapsing and of being able to recover from a relapse. But, let's be real. Cancer obviously has no chance...I mean I get our healthy recipes off pinterest, so. Just sayin'

We are around 1 1/2 years in remission, but I've been told that if a patient is going to relapse, it generally occurs shortly after stopping chemo. For us, that time will be November. We're still living in this in between place. We're trying to be normal, we're planning for the future, we're at work, we're saving money, we don't think about cancer everyday anymore, but every now and then there is this strong carpe diem type urgency to really live today. That might be a good impulse for everyone to embrace. Today I was staring at A while we were folding laundry and noticed him holding a pair of songs out like a microphone and singing into them. And he looked hot. So we collapsed onto the bed right in the middle of all the freshly folded clothes for a make-out session. Because, hey, seize the moment. And we actually didn't crumple too many pieces of clothing!

Sometimes living in this in-between place means it's the other extreme. A memory crosses my mind. Sometimes I'm just hit with the feeling of just how horrible things have been, how unfair it is that we've had to live through the things and feelings we have, how much I'm really not living in the same world anymore. I miss the old one. I won't say more than that.

(A hates hospital food. This is just another day of getting off work, driving home, making dinner, packing it up, and taking it up to the hospital. Luckily A has been out of the hospital for months and we anticipate only one more stay.)

One really weird thing about our lives is that we moved from Nebraska to Texas after the diagnosis, so everyone that knows us now knew us after the cancer. It's odd, but it makes for really different relationships. I think our friends back in Nebraska thought of us as normal people and they were just as shocked as we were when A was diagnosed. I swear, he's the last person I ever would have thought would come down with a disease. To everyone here, we're definitely marked by the cancer. And now I started the blog off with this marker. Honestly, I'm not too much of a cancer blogger. Just like any other girl, I'm really interested in sharing the fun summer drinks I created and interesting fitness tidbits I discovered around the web. The truth is that cancer gets boring, and exhausting, even to me. But today is the day after the day that I saw The Fault in Our Stars and so here it all is pushed up against my heart. A could relapse, he could die, it could be fast, my entire world could turn inside out in a moment.

After the movie has been out awhile longer I'll tell you my reactions to it. It was odd to me which parts caused the strongest reaction. It wasn't even what A would have expected.

(We found a Christmas tree in the hospital.)

XS & OS,

jillian

2 comments :

  1. Can you get the entries off your other blog and repost them here?

    ReplyDelete
  2. I'm not entirely sure. At this point I've been able to export them, but I'm not sure whether I'll be able to import.

    ReplyDelete