"And if I die before I wake..."

When I was a little girl a hand-embroidered copy of the "Now I lay me down to sleep" poem/prayer hung on my bedroom wall. The stitching was beautiful, but that line about dying before I woke up always unsettled me a bit. After a recent purging of my mother's attic, that framed poem returned to my now-bedroom. Granted, it's no longer displayed prominently on the wall, but rather tucked in my closet area back behind some boxes and a hamper, but the idea behind that line still haunts me..."if I die before I wake."

Exhumed from my closet, soon to be returned.

Last night Brynn and I went to Target. She was beside-herself-excited to buy some fancy clicky pencils with her money she's been saving up for something special. I, on the other hand, was shopping for something I was much more ambivalent about. Stationery. Don't get me wrong, I adore school/office supplies of all sorts, and stationery is no exception. In this case though, the purpose of the stationery gave me pause. I need pretty paper, with flowers or owls or sophisticated patterns, to write letters to people in case I die.

These are letters I've meant to write for a long time. Like most other parents, I've always had the occasional thought about what would happen to my child if I weren't around to take care of her. (At least, I *think* other parents do that too). Since I've been diagnosed, then rediagnosed, then rerediagnosed, I've spent a lot more time thinking about such things. One thing I decided for certain is that I wanted to leave things for Brynn, so I could continue to connect with her even if I can't be here to do it in person. Letters, presents, videos, that sort of thing. After the first rediagnosis I made 2 videos of me reading chapters from Tales of a Fourth Grade Nothing. Nice, but not exactly emotionally engaging. When I tried to record a message for her to watch in the event that I died I broke down into a heaving, sobbing, gasping mess. And so I bought stationery.

Last night I wrote a letter for Brynn to read in case I die. I was still a sobbing heaving mess the whole time I was writing it, but that isn't what's captured in the letter. Brynn and I used to have a contest to say who loved each other the most and we finally tied when I introduced the concept of infinity. So in the letter I told her I love her times infinity. I explained that she shouldn't be scared because there are so many people who love her. I said how sad I was too, even just at the thought of having to leave her. I told her how very proud I am of her and I listed out some of the things I hope she'll always remember that I taught her. In fact, in the end the whole letter ended up being a reminder of things she already knows. Things I think every parent would tell their child throughout their lives and after. I love you, don't be scared, I'm proud of you, and I hope you remember all the things I've taught you.

Honestly, it was an incredibly hard letter to write. I hope the many others I want to write are easier, though I don't count on it. Yet, despite my personal struggle to write out those things, I believe everyone should write a few of these letters, especially if you have children but even if not. Death is hard for those facing it, but the real strength surrounding death comes afterward as people struggle to deal with it. There aren't many things I can do for Brynn if I die. I can't set up a big trust fund, I can't dry her tears, I can't watch her graduate. But I can leave her letters to help her deal with my death, were that to happen. I desperately hope that these letters gather dust for many many years and have to be rewritten as I watch Brynn grow older and mature. But just in case "I die before I wake" I know I'll have said I love her times infinity.

No News (is Good News)

I've started getting messages from folks wondering how I'm doing, which probably means it's been too long since I've updated everyone on how my treatments are going. I guess I kept waiting for something eventful to happen so I could report back, but this latest treatment is actually a treat compared to my previous chemos.

After the first round of Adcetris I did have quite a few headaches, but they weren't migraines and could be kept under control with Tylenol. Thank goodness for that, since acetaminophen is the strongest pain killer I'm allowed to take. A few other minor side effects proved to be minor annoyances, but everything has been very manageable. The most significant difference I've noticed is that my body is tired, so when I go to bed I'm liable to sleep for 10-12 hours some days. While I'm awake though, I don't feel overly fatigued. All in all, I'd much rather go through an Adcetris treatment than have the flu or a stomach virus. (Though I'd trade my upcoming transplant for either!)

With treatments only happening every 3 weeks I've had plenty of time to rest between each round. I've been trying to balance my eating between indulgence (ex. the mexican fire chips I brought home from Cancun, UDF ice cream, and Cincinnati treats) and healthy choices (ex. broccoli, green tea, fruits) but I suspect indulgence is winning out. Cincinnati is just too delicious.

Home-brewed loose leaf tea isn't bad, but it also isn't Penn Station, Skyline, or Izzy's.

My doctor told me that while I shouldn't drink alcohol for the most part, with this treatment I could have an occasional drink if it was for a celebration or a special occasion. I had one margarita in Cancun and I'm planning on toasting my upcoming 31st birthday with friends.

I'm still not sure if I'll lose my hair with this treatment or not. In the only study that's been done on the drug (sample size = 100 patients) only 13% experienced allopecia (hair loss). With chemos the drug doesn't make your hair fall out immediately, it takes several weeks. Since I've only had 2 treatments, the jury is still out on whether I'll be sporting my hats again soon. I hope to figure it out before too long though. If it's not going to fall out I'm in desperate need of a haircut, but no sense spending that money if it's going to shorten up on its own!

For Valentine's Day this year I'll have my third date with Adcetris. We'll wait a couple of weeks after that treatment (for the medicine to kick some cancer arse) and then get another PET scan (to see if Adcetris and I are working out or if I'm just getting the run around). Depending on the results of that scan I'll either (a) get ready for transplant (b) continue my dates with Adcetris or (c) have to break it off with Adcetris and start seeing a new chemo drug. While Adcetris might not bring me flowers or chocolates, it's also not brought me any nausea or mouth sores, so I'm hoping options a or b work out.