Saturday, April 27, 2013

Portland Melanoma Walk is two weeks away!

After months of planning, it's hard to believe that the 2013 Portland Melanoma Walk is only two weeks away! If you're a regular reader, please consider making a donation on my personal fundraising page. I hope to see some of you on May 11th!

Thursday, April 18, 2013

"Drink bottled water and don't burn"

The Hard Rock, Punta Cana.

Hola! I made it back from the Dominican Republic in one piece. The whole trip was surreal. We'd be planning it for almost a year, so when we finally got there, I think we were all a little like, "Is this really happening?"

Boat and swimming excursion - so fun!

Punta Cana is truly unlike any place I've ever been. Granted, I'd never been to the Caribbean, nor had I visited a Spanish-speaking country before, but STILL. The Hard Rock resort was insane, and the beach was truly the perfect backdrop to my friend Jessica's wedding ceremony.

Gorgeous location for a wedding!

I am also very proud to share that I made it through the whole week without frying myself! On our shuttle from the Punta Cana airport to the resort, our driver warned us: "Drink bottled water and don't burn." I'd already heard that the Dominican sun can be incredibly intense, so as I mentioned in my last post before I left for vacation, I was a little worried about getting a sunburn. Some helpful hints that kept me from burning:

  1. Don't skimp on the sunscreen. It takes about a shot glass or 1 oz. of sunscreen to adequately protect your whole body. When I packed for the trip, I calculated how much sunscreen to bring by assuming I'd need 1 oz. for every two hours I spent in the sun.
  2. Reapply, reapply, reapply. Since we spent a lot of our time in the pool, I often reapplied my sunscreen more frequently than every two hours. For example, one afternoon we swam from about noon to 4 p.m. During those four hours, I reapplied SPF 30 to my face, neck, ears, and shoulders about five or six times. Some of my friends who didn't reapply as frequently ended up with severe sunburns and blisters.
  3. Seek the shade. When possible, I hung out under the shade of a beach umbrella.
  4. Create your own shade. I'm notorious for burning my scalp, so I made sure to bring a hat on the trip. It ended up being a huge lifesaver! The hat not only saved me from burning, but it also kept my crazy beach hair in check.
Proof that it's possible to go on vacation without burning.

Now it's back to the real world. I'm usually such a slave to my iPhone that I didn't think I was going to be able to unplug for the whole week. But I did! Aside from a few quick Facebook posts to check in with friends and family from home, work and email were the furthest things from my mind. A much needed mental vacation. Congratulations Dustin & Jessica! Thank you for planning such an amazing destination wedding.

Have you gone on any fun trips this spring? Or do you have any vacations planned for this summer? Anyone else been to the Dominican Republic?

P.S. One more day to enter my Fitbit giveaway! Please enter and share with your friends.

Monday, April 8, 2013

My relationship status with the sun: It's complicated

Enjoying the nice weather with my mom on Easter Sunday.

Last week, we had a sunny Easter in Portland for the first time since I can remember. I was thrilled to get a break from the rain, to dust off my sunglasses, and to sit outside without a jacket for the first time in months. But with the nicer weather comes questions from my family and friends: Shouldn't you be sitting in the shade? Did you remember to put on your sunscreen?

Melanoma survivors (myself included) often describe having a love/hate relationship with the sun. I love BBQ-ing and eating outside on the patio, but I also worry about burning and putting myself at risk for more skin cancer.

Al at Black is the New Pink recently wrote a blog post that asks: Is anti-tan the same as anti-sun? I always enjoy reading Al's posts, but this one really resonated with me. After all, here I am testifying in support of a teen tanning ban in Oregon, and yet I'm tempted to tweet about the nice spring weather. Does this make me a hypocrite? Al's blog post helps reassure me that the answer is no. Here's a short except from his post:
"Those who have been adversely affected by the sun (whether it be from melanoma or aged skin) have every right to fear the sun. But for many, they’ve learned to respect it rather than fear it. They have learned that it’s important to wear sunscreen when enjoying the sun’s warmth. They know it’s best to seek shade between 10AM and 4PM when the sun’s rays are at their strongest. They know that wearing a hat provides additional protection. Believe it or not, they enjoy the sun very much. They embrace the sun. They also know the limits in which to enjoy and learned to respect it."
Later this week, I'll be flying to Punta Cana, Dominican Republic for my friend Jessica's wedding. I'm excited--obviously--but to be honest, I'm also a little nervous. What if my pale skin makes me stand out like a sore thumb on the beach? What if I miss a spot with my sunscreen and end up with a nasty burn? I've finally come to terms with being "pretty in pale" in my rainy hometown, but what happens when I travel to the Carribean?

Interestingly, a study published earlier today found that 1 in 4 skin cancer survivors does not use sunscreen, and that a small percentage of melanoma survivors continue to use tanning beds. I can't explain this, but there's definitely a part of me that understands. Despite the fact that I've stocked up on sunscreen and bought a new hat to protect my skin on this trip, almost every person I've told about my vacation has said to me, "Oh my gosh! I'm so jealous! You're going to come back so tan!"

It would be so much easier to just lay out in the sand and not worry about what the sun was doing to my skin, but knowing everything I know now, knowing everything I've been through, and knowing young women who have died from the same type of cancer I had--it changes things. I won't ever not be able to worry about it. I'm sure I'll have plenty to share when I get back. Including reviews on about five different brands of sunscreen!

Don't forget to enter my Fitbit giveaway while I'm gone :)

Thursday, April 4, 2013

What it means to be a "patient stakeholder"

Greetings from Baltimore, Maryland! I just finished a full day of reviewing grants as a patient stakeholder for the Patient Centered Outcomes Research Institute--aka PCORI. PCORI funds biomedical research, much like the National Institutes of Health, but as its name implies, the research it funds is uniquely "patient centered." What does that mean? Proposals are critiqued not just on their scientific merit but also on their involvement of patients in the research process and their likelihood of solving problems patients identify as most important. Each grant submitted to PCORI is reviewed by both scientists and at least one patient, which is why I had the opportunity to participate in a scientific review process that is typically limited to MDs and PhDs.

The whole process has been fascinating to me. I do have quite extensive experience working with scientists and reading grant proposals--when I'm not blogging, I manage the Research Funding & Development Services program at Oregon Health & Science University. That said, I'm not a scientist. I may help scientists find grants to apply for and advise on writing, but I've never had the opportunity to review a grant for a public or private entity before. In summary, the experience was incredibly rewarding and informative. I encourage anyone who is interested to apply to be a patient or stakeholder reviewer. It's a pretty hefty time commitment, but I know a few fellow health advocates who I think would make tremendous contributions as a reviewer. Feel free to email me if you're considering applying--I'd be happy to answer any questions you have.

Monday, April 1, 2013

GIVEAWAY: Support melanoma awareness + Win a Fitbit prize package!

Win $200 worth of awesome gadgets from AT&T. The Fitbit is so cute and tiny!

I am thrilled to announce my first ever Pretty in Pale giveaway, courtesy of AT&T. I've really wanted to try one of these devices, so I'm super jealous that one you is going to win a Fitbit ZIP Wireless Activity Tracker (MSRP $60), plus a Fitbit Aria WiFi Smart Scale (MSRP $130). Both make it easy to track your physical activity by networking wirelessly with your computer or smartphone.

Fitbit ZIP Wireless Activity Tracker (more info)
  • Tracks steps, distance, and calories burned
  • Syncs automatically to your computer or select Bluetooth 4.0 smartphones or tablets
  • Set goals, view progress, and earn badges
  • Free iPhone and Android App
Fitbit Aria WiFi Smart Scale (more info)
  • Automatically taps into your home wireless network every time you weigh in to save your info to
  • Track your weight with easy-to-read graphs
  • Measure body mass index (BMI) and body fat percentage

There are several ways to be entered to win, including registering for the Portland Melanoma Walk. Enter below using your Facebook account or email address. Contest ends Friday, April 19, 2013. Be sure to leave a comment letting me know why you deserve to win!

a Rafflecopter giveaway
Fine Print: Prizes for this giveaway were provided to Pretty in Pale from AT&T. No purchase necessary to win. U.S. residents only, please. Void where prohibited.