Tuesday, March 31, 2015

Getting survivors involved in the design of melanoma research: Our PCORI project advances to Tier 2

Great news to share! The project I've been working on in collaboration with Oregon Health & Science University and SolSurvivors has been selected to advance to Tier 2 of PCORI's Pipeline to Proposals Program. Tier 2 awards provide up to $25,000 to help recipients strengthen community partnerships, develop research capacity, and hone a comparative effectiveness question that could become the basis of a large-scale research project.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in research (like me!) to develop the means to produce community-led funding proposals focused on patient-centered comparative effectiveness research. In 2014, I was part of the inaugural Tier 1 cohort of this program.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," aims to involve patients and other critical stakeholders in the development of strategies for preventing and detecting melanoma at an earlier stage, thereby decreasing death rates. When melanomas are detected early, patients have a 98% five year survival rate, but if the cancer has spead to the lymph nodes and other parts of the body, survival rates drop to a mere 16%*. Because of its origins in the skin—where doctors and patients can see it—melanoma should be one of the most easily recognized and detectable of all cancers. Unfortunately, barriers still exist to early detection of melanoma. During Tier 1, we learned that many patients don’t know what to look for when conducting a skin self-exam. Other barriers to early detection and treatment may include a lack of knowledge that melanoma can be life-threatening, poor/no insurance coverage, lack of transportation/distance to a provider, and treatment by a doctor that lacked expertise in melanoma.

During Tier 1, we began building an “army” of volunteers to attack melanoma prevention from new angles and perspectives. Our greatest accomplishment during the nine-month award period was to support the launch of the Melanoma Community Registry at Oregon Health & Science University. As of January 2015, the Melanoma Community Registry had 2,374 patients, 446 family members of patients, and 146 friends of patients signed up. As director of the project, I contributed by participating in brainstorming meetings, drafting text for recruitment materials, reviewing informed consent language, appearing in TV and newspaper articles promoting the registry, promoting the registry at community events such as the Portland Melanoma Walk, as well as cost-sharing IT development.

In this next phase, we plan to build upon the progress we made in Tier 1, with the ultimate goal of working toward a large-scale research study in collaboration with researchers at OHSU. Specifically, we plan to use surveys and focus groups to identify issues that are the most crucial to melanoma patients and those who care for them. We are also continuing to develop our network and would love to meet others with an interest in contributing to this effort. Want to get involved? Send me a note at info@solsurvivorsusa.org.

View this video to learn more:

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

*National Cancer Institute SEER

So, I'm in a long-distance relationship

Me and Tim before he moved to SF earlier this year.

Three years ago, when I first started dating Tim, my biggest fear was that I'd fall for him and then he'd leave. Not long before we met, he had moved to Portland to be a supply chain analyst for a large tech company. Much like I was in my early 20s, he was uber-ambitious and willing to relocate just about anywhere if the job was right. Surprisingly, he stuck around for a while--or at least long enough to become an integral part of my day-to-day life. Imagine my chagrin when he came to me last April and told me he'd been offered the opportunity to move to San Francisco ($#&@!^#@#$).

He asked what I thought he should do. Take the job. Duh. It's a fantastic career move, I told him. Plus, he had no reason to stay here except for... er... me. My Portland roots, unlike his, are deep. I knew that pursuing this promotion would make him happy, so I chose to support it 100 percent.

He accepted the job, but then weeks turned into months and the move itself kept getting postponed. While I'm not one to complain, the planner in me kept wondering when he was actually going to leave.

If you're like me, you often take more pleasure or pain in the anticipation of an event than the event or situation itself. Not surisingly, I spent much of those nine months freaking out over a situation I had absolutely no control over, probably to the detriment of that time we did have left together living in the same place.

The two of us at a friend's wedding over the summer.

When he left in late January it was difficult but not unbearable. I spent 12+ hours helping him sort, fold clothes, and pack up his U-Haul. By the end, we were both a bit delusional, but it was nice to spend those last few hours together. It didn't feel like he was saying goodbye permanently because I knew I'd see him again in less than a month.

In all honesty, those first few weeks sucked. I felt discouraged and completely lost. I found myself googling "how to survive a long-distance relationship" the way I google things like "how long should I boil eggs?" and "how do I contour my cheekbones?" He was the one still living out of a suitcase, what right did I have to be worried about the current state of affairs?

Clearly, it's only March, and I'm sure I've only scratched the surface of how to truly survive a long-distance relationship. I've had more emotional ups and downs in the past eight weeks than I did my junior year of high school, but I'm hopeful and open-minded. Tim will be visiting me once a month, and after I get back from Australia, I plan to do the same. I'm learning how to be patient, how to be more forthcoming about my feelings, and to not take everything so darn seriously.

Monday, January 19, 2015

Oh, the places you'll go

Last week, I was sitting in my office, reading through a proposal for a grant, when I looked up at my calendar and realized it's been exactly five years since I was diagnosed with melanoma. How funny it is to think back five years. In some ways, I feel like I'm the same person, but in so many other ways, I feel like I'm not.

I watched a TED Talk over Christmas break called, "The psychology of your future self." The premise of the talk is that--because we can't imagine where we'll be in the future--we underestimate how much we'll change five, ten, or twenty years down the road.

Here's a snippet:

At every age, from 18 to 68... people vastly underestimated how much change they would experience over the next 10 years... Why does this happen? We're not entirely sure, but it probably has to do with the ease of remembering versus the difficulty of imagining. Most of us can remember who we were 10 years ago, but we find it hard to imagine who we're going to be, and then we mistakenly think that because it's hard to imagine, it's not likely to happen. Sorry, when people say "I can't imagine that," they're usually talking about their own lack of imagination, and not about the unlikelihood of the event that they're describing.
The bottom line is, time is a powerful force. It transforms our preferences. It reshapes our values. It alters our personalities. We seem to appreciate this fact, but only in retrospect. Only when we look backwards do we realize how much change happens in a decade. It's as if, for most of us, the present is a magic time. It's a watershed on the timeline. It's the moment at which we finally become ourselves. Human beings are works in progress that mistakenly think they're finished. The person you are right now is as transient, as fleeting and as temporary as all the people you've ever been. The one constant in our life is change.

This year, instead of coming up with a traditional New Years Resolution (or in my case, usually about 15), I decided to set one goal: Travel to Australia to visit my good friend from college.

Sounds simple enough, right? Then why have I been putting it off for the past year and a half? Perhaps the thought of spending a whole paycheck on a flight is scary and it's inconceivable for a work-a-holic like me to take 12 days of PTO in one fell swoop. But I'm doing it! I booked my flight over the weekend, and now I have a little less than three months to plan my trip to the other side of the world. I'm giddy with excitement, and yes, a little scared, but I hope that by continuing to push myself a little outside my comfort zone, I'll become an even better version of myself in 2020, 2025, 2030, and beyond.

Wednesday, November 26, 2014

Be thankful, be happy

Image: Julep Instagram.

Some research suggests that the key to happiness is gratitude, so I'm making a point to try to recognize the people and things I am thankful for--not only on Thanksgiving, but year round. Here are a few of the things in my life I'm grateful for right now:

  • Living so close to my mom.
  • My job.
  • Dark chocolate.
  • My iPhone 6.
  • Friends who are having babies!
  • Weekends with absolutely nothing on the agenda.
  • Exploring new restaurants with Tim.
  • Cabo 2014.
  • Oprah chai tea lattes from Starbucks.
  • My first wine club shipment.
  • My health.
  • New episodes of Homeland.
  • Having a network of friends and family who are supportive of my personal and professional goals.
  • Birchbox. Because is still makes me smile every month.
  • Puppies.
  • My Invisalign treatment is almost done!
  • The never-ending source of entertainment that is my Kindle.

Wishing you a wonderful Thanksgiving with all of your favorite things.

Thursday, October 9, 2014

#TBT: Super blonde

Long blonde hair freshman year of college in 2004.

Blame it on Pinterest, but lately I've had a mysterious urge to highlight my hair. To give a little context, I first started coloring my hair when I was 14. I brought pictures of platinum blonde celebs with me to the hair dresser, and predictably cried when I left the salon looking anything less than a John Freida model.

In my teens, it was never just about being blonde. It was about being blonde-and-tan. One was not sufficient without the other. There was no such thing as being too blonde or too tan. It wasn't until my senior year in college that I got fed up with the split ends and meandered back to the dark side. Shortly thereafter, I cut back on and soon quit tanning altogether, embracing a new, more natural look.

Me and a friend in NYC in 2007.

Fast forward six years: my hair has grown about a foot, and I haven't gotten close to a foil or box of hair dye in several years. For no reason in particular, I find myself daydreaming about subtle caramel highlights or a touch of ombre. Until now, I would have blown off the urges and stuck with my usual routine, but sometimes its nice to make a change.

You may have noticed that I've been a "bad blogger" lately. The reason for this is twofold: (1) the trackpad on my MacBook has been broken and driving me crazy, and (2) last month, I started a new job! After nearly five years working in grant development and communications, I've shifted into an entirely new role doing community relations for the OHSU Knight Cancer Institute. It's been incredibly exciting for me to try something new, as well as to get paid to do the type of work I've spent so much time doing as a volunteer for the past few years.

With the little broski at my college graduation in 2008.

As I've made this move, it's been the perfect time for me to step back and evaluate my continued involvement in extracurricular activities like planning the Portland Melanoma Walk and even writing this blog. These activities have been immensely therapeutic for me, but as life goes on, I've felt less and less compelled to spend all my free time working on these projects. It's gotten to the point where every time I plan a melanoma-related meeting or event, it feels like a nagging reminder of something I've worked so hard to overcome. When I feel this way, I have to remind myself, this is a good thing. It's not quitting. It's coping. It's finding a way to make the best of a bad situation and then passing the torch to others who need that outlet. My job will continue to keep me connected to some great cancer prevention and early detection initiatives, but I'm definitely ready to step out of the spotlight and let the focus be on others.

Last weekend up at Mt. Hood. Hair au natural.

You can see why I'm tempted to switch up my look. I know I haven't escaped melanoma for good. Just last week I had a minor surgery on my left shin to remove an abnormal mole, but overall, I feel like I'm in a really great place right now, and I'm excited to see where life takes me next.

xo Katie

P.S. Will share pics if and when I do highlight my hair.

Sunday, August 17, 2014

I detoxed... and then I ate a Big Mac

After completing my first 10k on Aug. 11.

This spring, I found a rather delectable-looking clean eating meal plan on Buzzfeed and followed it religiously for about five days. It was a bit burdensome to cook three meals a day (usually I buy lunch at work or grab take out on the way home) but it was fun to try news things in the kitchen, like roasting fennel and adding unexpected ingredients like blueberries to my salads.

Eating healthy made me feel better for a split second, but by the time the weekend rolled around I was exhausted and too busy to cook. One night, I went out on the town with friends and inadvertently ended the night in the McDonald's late-night walk-up window. As I sat on my futon eating a Big Mac, french fries, and a sugar-laden soda, I decided that something needed to change.

Chicken, snap peas, and cucumber salad.

As a patient advocate and health blogger, I spend a lot of time thinking and writing about health, beauty, and self esteem, so how had I become someone who was binging on junk food and feeling awful about my waistline?

In June, I joined my cousin and signed up for a 21-day fitness challenge. During the month of June, I ended up exercising 19 out of 30 days. Whether I was weight lifting, jogging, or doing pilates, I got off the couch and made myself sweat even when it hurt. For three weeks, I cut about 95 percent of the crap out of my diet. In doing so, I learned that I can survive without sharp cheddar and that the world won't end without ranch dressing. I can look Ben & Jerry's in the face, drool a little, and then walk away. More importantly, I learned some pretty interesting things about my body, like it's easier to wake up in the morning when I don't go to bed with a full stomach, and my energy levels vary based on what types of foods I eat.

Indulging in an occasional post-race beer? Fine by me.

Every time I read the news, there's a new article saying that exercise prevents cancer, that it lowers our risk for dementia, or that sitting at a desk all day is probably killing us. But working out every day? Easier said than done. 

Three months after my "you shouldn't be doing this to yourself" epiphany, I'm not perfect by any means, but I've made strides to challenge my body and mind in new ways. On Aug. 11, I ran my first 10k, which was a rugged, off-road trail run. It was by far the hardest race I've ever done, but I finished it and it felt awesome. I've also been taking a ballet class for adults, which has been a great way to meet new people and learn something completely new and different. (Side note: ballet is way harder than it looks.)

Why am I telling you all this? As friends and regular readers of my blog, you are the people who hold me accountable for my actions. When I quit tanning, you helped keep me on track. I hope that by sharing this with you, I'll be less likely to slip up and fall back to old habits. We all have room for growth and improvement, but I hope that I never forget to keep loving and taking care of myself.

Tuesday, July 15, 2014

Tips for staying safe and stylish in the sun

Safe and stylish in the sun!

Summerskin Dolman top in kiwi / Banana Republic Zoe hat / Supergoop Everday Sunscreen SPF 30 / Ray-Ban Clubmaster sunglasses / Bare Minerals Ready Foundation SPF 20 / Clinique Glosswear SPF 15 / Summerskin Endless Summer scarf in Grey

We're in the midst of a 90-degrees-until-the-end-of-time heat wave here, so when I'm not locked up in my air-conditioned office, I like to spend as much time as I can outdoors. Delightful as it can be, too much sun exposure leads to premature aging and ups risk for skin cancer. HSN recently launched a campaign to encourage bloggers to share their tips for staying both safe an stylish in the summertime. As both a beauty and sun safety devotee, here are a few that I swear by:
  • Indulge in an SPF you love: One of the easiest ways to protect your skin from UV rays is to use a broad-spectrum sunscreen that's SPF 30 or higher. I used to look at $20 tubes of sunscreen and run the other way, but now I think of it as an investment in my health and beauty. Like any beauty product, if you buy a sunscreen with a cute bottle or a fun fragrance, you're 10x more likely to reach for it at the beach. (Looking for a new SPF? Check out these picks from HSN.)
  • Look for clothing with SPF built in: Once upon a time, cute sun protective clothing was an oxymoron. Now, more and more brands (hello, J.Crew) are making clothes and swimwear with sun protection built in. I recently purchased one of these versatile scarves from SummerSkin and I love it.
  • Seek the shade: Sometimes, sitting in the sun is inevitable, but if I'm lounging by the pool, I always try to snag a spot next to an umbrella. Not only do you avoid the sun, but you can keep your cool (i.e. sweat less) under an umbrella. You can also create your own shade with a cute floppy hat.
  • Enjoy happy hour: The sun's rays are strongest from 11 a.m. to 2 p.m., so I like to hit the pool between 4 and 6 p.m. Bonus: The pool is less crowded after 4 p.m., which means you don't have to fight for a lounge chair with an umbrella.
How do you stay sun safe and without sacrificing your style?