Girls in White Dresses and NOBODY PANIC.

My dress is in.

It’s a size smaller than it should be. But I’m not panicked. I’m cool.

There’s no time to send it back anyways, so why panic?

The seamstress is going to let it out a bit so I don’t suffocate to death on my way down the aisle, and we added some lace in places to cover the port instead of using a flower. All systems are go. We’re having a wedding.


Besides, my stomach is already so destroyed I’m sure I won’t be eating solid foods from mid-November onwards. The dress will fit.

The florist, the valet, the venue, the caterer, the DJ, the officiant, the hotel, the hair, the make-up, the dress, the invitations…It’s all done and done. Now all I have to do is sit back and not panic.



In other news…

Last week was the culmination of all of our work at Global Genes–our annual Patient Advocacy Summit and Tribute to Champions of Hope Gala. It was spectacular, informative, entertaining, educational–annnnddd I was not there.


This is not a huge surprise to my team since I haven’t been able to make the trip out to the Huntington Beach, CA event for the last few years.

While I’ve managed to tough out a three hour flight, a six hour flight (at best, and potentially an entire day of travel) is just not in my repertoire of things I can fight back at with autonomic dysfunction. At least not yet.

Thankfully I was able to watch the whole thing live streaming on our site. The team blew it out of the water. Our speakers were beasts. And my mom and sister were able to attend (for themselves and for me.)

My mom is always looking to network for her TV show, Behind the Mystery: Rare and Genetic on Lifetime. If you haven’t seen one of her segments check out a clip from this morning’s show:


My sister was also able to go, and I’m glad that she got to hear the whole caregiving segment. I haven’t talked much about it, but my sister and her boyfriend are going through an incredibly tough time. A few months ago Joey was diagnosed with pancreatic cancer and it’s been a whirlwind of intense surgery and research since. He started chemotherapy a few days ago and I don’t think it’s been easy on either of them.

It’s a weird, helpless feeling being on the other side of these kind of situations. You desperately want to help and advise and support–but at the end of the day you can only really listen, and pray, and let them know your heart is trying to burst out of it’s chest to find a way to make everything feel better for them.

Not to compare the spectrum of disease and who get the monopoly on suffering…but suffice it to say that getting hit upside the head with a cancer diagnosis at 25, out of the clear blue rates pretty high up on the list of things that fucking suck.

So..if you have a minute maybe you could send some love their way, leave a comment, tell them your best joke or funniest cancer stories. There’s got to be tons of funny cancer stories, right?…Right?

Here, I’ll start:

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  • Have you ever snorted ginger ale out your nose?! I hadn’t either, until I read your last image. Now my nose hurts!!! Too many bubbles…

    Cancer at 25 is scary. At least a 25 year old’s body tends to be better at recovery than a 50 year old’s body. (“Tends to be” is the key phrase, I know that other health issues can make it much more difficult.) I’m going to send some extra love out into the universe for them!!! Hope everything goes as well as it possibly can go. Luckily, your sister isn’t a complete stranger to the caretaker stuff, even if she wasn’t doing anything herself, she’s been around chronic issues that need care 🙂 Best wishes for both of them!

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