Monday, February 22, 2016

Life is Amazing

I am in the throes of planning Quinn's FIFTH birthday party, by which I mean I'm browsing Pinterest to see if there's a chance in Hades I could pull off a Star Wars cake (or cupcakes), or if I'm better off ordering them from a professional. I can bake, but pastry decoration is a whole other level of domesticity that I do not possess. Also, do Quinn and his friends really need "Yoda Soda"? Or light sabers made of frosting-dipped pretzel sticks? Who am I kidding???

I'm also trying to make sure he's signed up for the right soccer camps but not too many because I don't want to overdo it. I'm still pretty sure we're over-doing it. And every preschool mom I know is debating kindergartens right now, figuring out where our children have been waitlisted or accepted, attending "meet-the-teachers events," waiting to be interviewed (yes, interviewed), determining which environment will be the best fit for our kiddos, and wondering WHEN THE HECK KINDERGARTEN GOT MORE COMPLICATED THAN CHOOSING A COLLEGE.

In the midst of this beautifully normal life, I've been scheduling doctor's visits -- scans next month, the follow-up with my oncologist, and another for me with my dermatologist last week for something on my elbow, the biopsy of which came back as "needing treatment," although not cancerous. It turns out it probably just needs some steroid cream, but I'll have a follow-up in 3-4 weeks to be sure. 

Because more doctors were what was missing from my life. 

A photo posted by LAYLA GRAYCE (@laylagrayce) on

So I'm worrying (just a little) about my elbow, which I should have more info about at the end of this week, wondering whether our puppy is getting enough exercise, trying to teach Quinn about eating the RAINBOW, and occasionally it hits me how lucky I am to be able to worry about things that are not cancer. (Side note: the rainbow thing is legitimately working. He tried red bell peppers, purple sweet potatoes, cauliflower tots, and ants on a celery log and only balked at the red pepper.)

"I LOVE sweet potatoes!" even came out of my son's almost-5-year-old mouth. Parenting for the win.


Last week, I finished reading Room, about a 19-year-old woman who is abducted and locked in a room. (The film has been nominated for a few Academy Awards). The woman is repeatedly raped by her abductor, gets pregnant, and has a little boy, who is five years old as he narrates the story. This room and his mom (and the occasional visit from their captor) are all of the world he's ever known. It is a story about how they manage, and eventually how they escape. But more than that, it is about the love between a mom and her son and how that carries them through, how it saves them both.

This book hit my emotions like a ton of bricks, and I can't recommend it enough if you have a five-year-old (or nearly there) in your life. They're pretty special people, and I'm pretty sure their love could save the world. So maybe there will be homemade light sabers at Quinn's party after all.

Monday, February 8, 2016

Heading to the Windy City

As I said, I'm working on a few advocacy endeavors, trying to figure out what I'll do with all my free time once this puppy is potty trained and Quinn is in kindergarten next year. KINDERGARTEN! I swear he was just learning to walk last week. Now look at him go (in the dark green).

Quinn hits the slopes from Jennifer Campisano on Vimeo.

One of the things I've signed up for is an advisory role for a conference taking place in Chicago in April. It's on how to build better online communities for healthcare, how to amplify our voices as patients and find each other as we stumble around in the dark after a devastating diagnosis, waving our little candles of shared experiences at one another.

Can you relate? Have you got an online presence in the healthcare space? Are you living with a disease -- whether cancer, diabetes, mental illness, HIV/AIDS, you name it? If so, I encourage you to apply to attend.

If selected, each participant's airfare, provided meals and hotel costs will be covered by Janssen and you will receive a formal agreement for your review and signature indicating that you agree to these terms. Janssen is accepting applications through February 22, 2016.

"The mission of HealtheVoices is to provide educational tools, resources and inspiration to help you better serve, expand and grow your online communities. We believe our 2015 conference was a great success because of the close connections that were formed across multiple health conditions, and we want to encourage you to consider being part of the conference again this year.

This year’s conference will feature nationally recognized keynote speakers focused on the power of online patient communities. New sessions will highlight the value of video blogging, how to maintain consistent fresh content for your communities, growing your impact as a patient advocate, while returning favorites will dive into new areas in analytics, how to handle compassion fatigue and more!

Janssen will once again be covering costs for travel and hotel accommodations."

You can see my post on last year's conference here, help the folks at Janssen's partner Everyday Health out by taking a survey about why you read my blog (and others) here, and look at some of last year's highlights and SUBMIT YOUR APPLICATION TO ATTEND THIS YEAR'S CONFERENCE HERE. I hope to see you there! And if I miss you in April, I'll be returning to Chicago in June, but that's a post for another day.