SolSurvivors Oregon receives $50,000 to partner with researchers on melanoma study

The SolSurvivors Community Engagement Committee.

Exciting news! The project I've been leading in collaboration with Oregon Health & Science University and SolSurvivors has been selected to receive $50,000 from the Patient-Centered Outcomes Research Institute (PCORI). Funds will be used to develop a research study that reflects the needs and interests of melanoma patients and their families.

The award comes from PCORI’s Pipeline to Proposal program, which enables individuals and groups who are not typically involved in the scientific research process to develop partnerships with researchers and spearhead the design of a patient-centered research proposal. Since 2013, we have been awarded a total of $90,000 to build a Community Engagement Committee and support the OHSU Department of Dermatology on engagement activities related to the Melanoma Community Registry.

Last fall, our project team jointly hosted a Melanoma Community Research Forum, where over 90 participants gathered in Portland and Bend to learn about the latest melanoma research and participate in small-group discussions about their experience with melanoma. Themes identified during the event are being used to shape a collaborative research project, as well as a community event to be held in November 2016.

Want to get involved? Send me a note at katie@prettyinpale.org.

About PCORI 
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.

A patient’s perspective on a patient-centered conference: Highlights from #PCORI2015 (Part 2)

Check out my summary of Day 1 of PCORI's Annual Meeting.

Patients are changing from research subjects to research partners. -Dr. Harlan Krumholz, PCORI board of governors and faculty member at Yale School of Medicine

Day 2

Dr. Joe Selby, executive director of the Patient-Centered Outcomes Research Institute, opened day 2 the PCORI Annual Meeting by giving an overview of the type of research PCORI funds: patient-centered comparative effectiveness research. CER, he said, compares two or more options about things that matter to patients. According to Dr. Selby, this research should be conducted in "real world" settings and should ideally pay attention to differences in effectiveness for different sub-groups of people (e.g. does a particular treatment work better for women than men).

When PCORI began awarding research contracts just a few years ago, most of the funding they offered fell into four broad categories: (1) assessing prevention, diagnosis, and treatment options; (2) addressing disparities; (3) improving health care systems; and (4) communication and dissemination research. Now, PCORI funding mechanisms are becoming increasingly targeted, addressing specific diseases or other topics that have been identified as high priority. These include programs that focus on asthma, MS, and reducing long-term opioid use, among others. PCORI has also become increasingly interested in funding large studies that better represent the entire population.

The morning's keynote presentation was given by Dr. Victor Montori, an endocrinologist and health services researcher at the Mayo Clinic. Dr. Montori gave a compelling presentation on the importance of involving patients in decision making. What's best for a person, he said, depends on what that person values. Dr. Montori also lamented the curent research funding process, which leaves about 85% of scientific proposals unfunded. To do the type of large studies PCORI aims to fund, he argued, research institutions need to end competition and encourage collaboration instead.

During the following panel, which included a number of stakeholders from various health care organizations, Nancy Brown of the American Heart Association said that if patients really understood how the research process worked, they would be horrified. She also said that people don't want to waste their time thinking about their health--it's only when they become sick that health care becomes the center of everything. In the same panel, former U.S. congressman Tony Coelho spoke about the role patient advocacy organizations play in bringing the patient experience to our legislature. He also noted that we all need to advocate for PCORI so that it doesn't disappear in 2018.

After a series of several plenary presentations, I was eager to break out into smaller group sessions. The two breakout sessions I attended on Day 2 highlighted examples of successful awardees from the Communication and Dissemination Research (CDR) program and the Eugene Washington Engagement Awards. In the CDR panel, shared decision-making tools featured prominently as a means of improving communication between patients and their doctors. Some awardees used focus groups to develop and refine their decision-making tools. Research teams found it was crucial to solicit feedback from providers like doctors and nurses in addition to patients so that these tools could realistically be used in the clinic. In the second breakout session, Engagement Award recipients shared examples of "pre-research" activities they had conducted. Some projects used Engagement funds to conduct a needs assessment in their target population. Other projects used their award to build a curriculum to train people to better understand and conduct patient-centered comparative effectiveness research.

During the final breakout session of day 2, I presented as part of a panel discussion on the Pipeline to Proposals. The Pipeline program provides funding to individuals or groups who would not ordinarily receive research funding from PCORI, and trains us step-by-step, so that--theoretically--in three years we will have built the foundation for a successful, full-scale PCORI award application. (Read more about our project.) I enjoyed participating in this session because it gave me a much-needed opportunity to connect with follow Pipeline awardees, but also because I believe this program is truly emblematic of the type of patient-driven research collaborations PCORI was designed to support.

A recent Time magazine article (that I found in the airport on my way home from the PCORI conference) addresses a patient-centered research question about breast cancer treatment.

Day 3

Day 3 of the meeting featured a keynote presentation by NIH director Dr. Francis Collins. Even though PCORI is technically a nonprofit entity, not a federal agency like the National Institutes of Health, it was impactful to have the head of AHRQ and the head of NIH lend their time to this conference. I think it helps legitimize PCORI as a credible, scientifically rigorous organization, even though the work they fund is quite a bit different.

On day 3, I attended two very different breakout sessions: one on comparative effectiveness research methods and one on how to use your patient story to make a difference in research.

Over the past few years, PCORI has developed comprehensive methodology standards that govern all aspects of the proposal, from how to involve patients in the research process to how to analyze the data collected during a study. The purpose of following these standards is to ensure research findings are valid and can be replicated. Scientific methods are evaluated based on data quality, study design (e.g. randomized controlled trial or observational study), and how the data is interpreted. The PCORI staff member who lead the session emphasized that, while there is no such thing as the perfect study--there will always be trade-offs--it's important to be cognizant of where weaknesses might be so that you can consider how those weaknesses might impact your results.

The last session I participated in was by far the most hands-on. PCORI's engagement staff spoke about storytelling as a "method" of sparking engagement and collaboration. They also shared a tool they created to walk patients through the process of teasing out bits of their patient story that might be relevant to a research question. While the tool was still in draft form, I loved the concept. I also loved to have something tangible I could take home with me after the conference given that so many of the other sessions were very philosophical and not immediately applicable to my daily work.

Finally took the time to do some sightseeing while visiting Washington D.C.

Major themes and takeaways

• Communicating research results back to the community is essential for building and maintaining trust (bonus points for involving patients and other stakeholders in developing a plan for sharing research results).
• PCORI funding announcements are becoming increasingly more targeted and aimed at creating large, pragmatic clinical trials that more broadly reflect the "real world."
• Rigorous research methods and meaningful patient engagement are equally important to PCORI, even though they can sometimes feel at odds with one another. Many applications they reject are dinged, though, because of their lack of the latter.
• There's no one-size-fits-all model for engagement, but here are some activities that have been successfully used by PCORI awardees to create meaningful engagement: 
• (1) Including a patient partner as a co-investigator on the project and compensating them financially as such,
• (2) Include patients, caregivers, and other stakeholders like physicians on project advisory committees, and
• (3) Address research questions of interest to patients as identified by online surveys, focus groups, or other meetings.

As I mentioned in my first recap post, overall it was a great event. I'm glad I was given the opportunity to attend. I also look forward to seeing further progress towards socializing and truly implementing patient-centered principles in research and clinical practice.

To learn more or view archived videos from the 2015 PCORI Annual Meeting, visit www.pcori.org.

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

3rd Annual Northwest Melanoma Walk and Fun Run, May 31

This May, AIM at Melanoma (with help from yours truly!) will be hosting the 3rd Annual AIM for a CURE Northwest Melanoma Walk and Fun Run in Portland, Oregon. New for 2014, all net proceeds will benefit the Melanoma Research Program at Oregon Health & Science University’s Knight Cancer Institute and Department of Dermatology. Specifically, the event will raise funds for Portland's first Melanoma Tissue Bank, widely believed by the oncology community to be a key to major breakthroughs in melanoma research.

Northwest Melanoma Walk and Fun Run
Saturday, May 31, 2014 from 8:30 to 12 p.m. 

Wallace Park, NW 25th Ave. & Raleigh Street, Portland, OR 

 Register at: http://bit.ly/melanomawalk14 
Follow us on Facebook for news and updates

The event is free and will include a health fair, hosted by OHSU's Let's Get Healthy, where the whole family can learn about sun safety, how to detect suspicious spots on the skin, as well as how to participate in life-saving research.

Questions? Contact melanomapdx@gmail.com. Not local? Find an event in your area.

Meet Amanda from Marry Mint

I'd like to introduce you all to my new friend Amanda from Marry Mint. Since we started chatting a couple of weeks ago, I've become smitten with her bubbly personality, adorable pregnancy photos, and most importantly, the courage she's demonstrated since being diagnosed with melanoma at age 19. Thank you, Amanda, for sharing your story.

Hey everyone! I’m so thrilled and honored to be here today :)

Goodness, putting my “story” into words is much harder than I thought it would be. I’m FIVE YEARS cancer free and I only recently found the courage to begin sharing my experiences with melanoma. So, I’m sure you can tell from my photo that my skin is quite fair. As a little kid my parents were always careful and kept my skin covered either by clothing or sunblock. Were they perfect about it? Probably not. But they were certainly cautious. Then came those awful teenage years… Am I the only one who wishes I could get a do over? For more reasons than one. Ew. Just ew to being a teen. Anyway, I still wasn’t a sun worshiper but was definitely self-conscious about my pasty white mole covered skin. I knew enough to know that I was someone who was at a higher risk for skin cancer but of course “it won’t happen to me.” Was I a sun worshiper? No. Frequent tanner? No. Did I always make good choices about sun safety? Most definitely not.

The most common question I am asked is: “how did you know?” The answer is, I didn’t. Even my dermatologist didn’t. I had a new “spot” on my shoulder that was just weird. It was new, kind of blue-ish in color and got on my nerves because it was exactly where my seatbelt rested in the car. So new spot= go see your dermatologist, right? So I did.

At my initial visit with him we decided to leave it there and keep an eye on it. It didn’t remotely resemble a melanoma. About a month later I still had an unsettling feeling about it so scheduled an appointment to have it removed. Just a couple of days later my dermatologist called saying it didn’t look good. Pathology showed it could be one of three different things, one of those of course being melanoma. The next step was to have the area excised AND complete the sentinel node biopsy while the pathology was being sent off for multiple opinions. Long story short, I was diagnosed with malignant melanoma with spitzoid deviation stage 3b.

{The ‘spitzoid deviation’ is what made my particular disease complicated. It is a lesion that is most common in very young children and it’s behavior really isn’t known. SO we had to just treat it as aggressively as possible even though it is believed to be less invasive than your garden-variety melanomas.}

My treatment consisted of a modified radical neck dissections followed by the standard year of interferon, one month of induction and eleven months of maintenance. All while having regular scans and check ups with my dermatologist.

On my blog I try and open up about life after cancer. My anxieties, my family, different support systems, lessons, plus million and one photos of my sweet daughter. My hope is to show the world that life can and does go own following something as horrific as cancer. It isn’t perfect and it isn’t always pretty, but it can be damn good! :)

Find me online

My blog, Marry Mint

My cancer chronicles

A belated cancerversary

Last week marked four years since I was diagnosed with melanoma. It seems fitting that on my four-year cancerversary I had a meeting with one of the co-founders of AIM at Melanoma and that later in the evening I had an orientation for my PCORI Pipeline award on patient-driven melanoma research. Somewhere along the way, I've transformed from scared patient to a fierce advocate for cancer prevention.

Earlier this year, during a period of self-reflection, I struggled with the fact that perhaps all my blogging and fundraising and whatnot was taking up too much of my free time. After four years, I thought, maybe it was time for me to stop obsessing over the past and to move on. But I can't. Every time I try to step back and "take a break," someone makes an ignorant comment about skin cancer, or I overhear two teenagers talking about their tan lines on the bus.

I've also recently found new ways to become involved in melanoma research. Not just as a subject in a study, but as a patient who can partner with scientists to develop better strategies for prevention and earlier detection. There's lots to learn, which can be a little intimidating, but I'm excited to see where things lead.

I'll leave you with this fabulous infographic I found on Chelsea's Pinterest today--9 Sneaky Places Skin Cancer Hides. Check it out and help spread the word!

Shop Barnes & Noble to support melanoma research, Nov. 22-24

Get started on your holiday shopping early! Now through Sunday, November 24, 2013, a percent of proceeds from your purchase at Barnes & Noble supports AIM at Melanoma's efforts to find a cure for melanoma.

Barnes & Noble Bookfair

In-Store & Online across the U.S.

November 22-24, 2013

Purchase Books, Nooks, DVDs, CDs, Toys & More

% of purchase supports AIM's efforts to find the CURE for melanoma

In-Store Shopping

Present Voucher or Provide #11197969 to Cashier

Click Here to Print Voucher

Online Shopping

Visit BN.com/Bookfair
Enter #11197969 at Checkout

Quarter-life crisis, pt. 2

 "You are your own worst enemy. If you can learn to stop expecting impossible perfection, from yourself and others, you may find the happiness that has always eluded you." -Lisa Kleypas

"Guilt: the gift that keeps on giving." -Emma Bombeck

In 2008, I faced a textbook case of quarter-life crisis-itis. My dream of becoming a writer in NYC was shattered after I spent three months interning in the publishing industry and didn't love it. Was it glamorous? Sort of. Was it meaningful? Not in the way I had hoped.

Ultimately, I decided to move back to my hometown of Portland, Oregon (free rent!) and "temped" with a variety of companies until I figured out what I wanted to do with my life. I spent time at a finance company, a small creative agency, and a nonprofit before ending up at my current employer--OHSU--in January 2010. What I appreciate about my job is that I've had the potential for growth, and my boss has been incredibly supportive of my extracurricular activities--from planning countless fundraising events to traveling to DC to review grants like I did earlier this week.

If you're a regular reader, you may have noticed that I've been a bit quieter than usual over the past few months. I've been super busy reviewing grants, planning bachelorette parties, and taking online classes, but I've also been doing some serious self reflection. I've been calling it quarter-life crisis: part two.

Last spring, I accomplished more in the realm of melanoma education and advocacy than I had ever hoped--I helped raise $40,000 for melanoma research and got to meet our governor who thanked me for sharing my story about melanoma and tanning beds.

When I started this blog, I admit, I had some selfish motivations: I still felt like I was the one who gave myself cancer and that I didn't deserve to be as "lucky" as I have been. Every time I log onto Facebook, I see posts from friends who are dealing with brain metastasis or who have lost a loved one to melanoma. It kills me to see this, especially when I'm still hearing so many people brush off skin cancer like it's no big deal. My motivation for blogging, for planning the Portland Melanoma Walk, and for sharing my story on as many public forums as possible, has been driven largely in part by good old-fashioned guilt. And, I'm actually very pleased to report, that at some point over the past six months or so, that guilt has finally lifted. Somehow, by serving this sort of self-imposed penance, I have come to terms with what happened to me, and I don't blame myself any more.

What does that mean? It's taken months for me to put this into words, and I'm still a little unsure. As I mentioned, I've been doing a lot of reflection on what my next steps should be in life. While I've wanted to go back to school to pursue a master's degree for a while, up until recently, I felt like there was something holding me back. I'm still not 100% certain what direction I want my life to take, but it may or may not involve a bit of a break from melanoma advocacy. Rest assured, I'm still organizing the Portland Melanoma Walk this spring (May 31, 2014 - save the date!), and I plan to continue blogging, but I don't want melanoma to get in the way of my life any more than it already has.

Thank you to all of you who have been so supportive of me throughout this journey. Several of you I've had a chance to meet with in person, but for those of you I only know "virtually," your kind words and support still mean more to me than you know.

Infographic: Know your skin

I'm back! ...kind of. Still working away until my trip to DC next week. In the meantime, someone sent me this infographic on how to spot a melanoma. I'm mildly obsessed with infographics, and I think this one does a really great job of distinguishing different types of skin spots.

View the full size infographic.

Dear Bruce Jenner, basal cell carcinoma is not melanoma

Bruce Jenner after surgery. E! News.

Bruce Jenner--a guy who gave the keynote speech at a tanning industry conference last year--has been diagnosed and treated for skin cancer. Unfortunately, he's also been spreading misinformation that belittles the dangers of melanoma.

In an E! News article, Jenner is quoted saying: "I was diagnosed with a form of Melanoma called Basal cell carcinoma and have undergone Mohs surgery to remove it."

Basal cell carcinoma is the most common form of skin cancer, with approximately 2.8 million cases diagnosed per year. Basal cell carcinoma is classified as a non-melanoma skin cancer. Although it can be pretty disfiguring, it's hardly ever life threatening.

Melanoma, in contrast, is much less common, but it's much more dangerous. Many melanomas cannot be treated with Mohs surgery. They require more extensive surgeries, and patients often require lymph node removal and other treatments if the cancer has spread beyond the initial tumor. In 2013, it's estimated that nearly 10,000 people will die from melanoma.

Last week, I had a really fantastic phone conversation with Mary Tripp, Ph.D., M.P.H., a researcher from MD Anderson Cancer Center who is leading a new melanoma prevention initiative. In her opinion, one of the reasons why people downplay the dangers of tanning beds is that they mistake melanoma for other skin cancers.

"A lot of people will know friends and family with squamous and basal cell carcinomas, which are not as dangerous," she said. "But melanoma is a major cancer."

I think that statements like the one made by Bruce Jenner help perpetuate the misconceptions that skin cancer isn't a big deal and that tanning beds aren't something we need to be worried about. I hope that Mr. Jenner gets better soon, but that he learns more about the different types of skin cancer, and that he actually does try to take better care of his skin.

8 for August: Melanoma surgeon turned patient, the "base tan" myth, and more

Lots of skin cancer articles in the news recently. Here are a few worth sharing:

1. In his LA Times article, "My melanoma, my message," surgical oncologist Travis Kidner shares what it's like to go from being a melanoma doctor to a melanoma patient. After his surgery for stage I melanoma, he says, "On my first day back at work, I saw four new patients with melanoma who were under age 46. My job as a doctor is to do everything possible to cure them. But as a survivor, I also feel a huge responsibility to prevent new cases... We need to get the word out: Tanning kills."

2. This USA Today article discusses state and federal regulation changes on indoor tanning that may help curb increasing young adult skin cancer rates. The article also mentions a social backlash against tanning, which includes a quick reference to Pretty in Pale, "a popular blog [that] raises awareness about melanoma and helps young women love the skin they were born with."

3. A new report in JAMA Internal Medicine that says about 29 percent of white high school students are still using tanning beds. With melanoma rates raising steadily at about 3 percent per year, this has a number of doctors worried.

4. Mary Elizabeth Williams gives a candid, moving glimpse into her experience with stage IV melanoma on the SU2C blog. A quick snippet: "All I knew was that it had to very, very bad for there to be no Stage 5."

5. A new study at Yale's School of Public Health helps validate previous claims that tanning is addictive. A number of people in the study continued to use tanning beds even after being diagnosed with basal cell carcinoma. About half of them, according to the article, exhibited classic signs of dependence.

6. I've blogged about the "base tan" myth before, but now there's new evidence to suggest tanning before a vacation may actually increase your risk of burning.

7. Illinois is the latest state to sign into law a ban on indoor tanning beds for teenagers.

8. Want to increase your chance of detecting a malignant mole early? Look at pictures of skin cancer online. A study published in the Journal of the American Academy of Dermatology in July indicates that people who see pictures of skin cancer may be more likely to do their own skin examinations. Find lots of helpful images on The Skin Cancer Foundation website.

I made the "Top 10 Skin Cancer Bloggers" list!

Last week I was contacted by the folks at ShareCare.com, an interactive social media site that connects experts and patients on issues related to health and wellness. I showed up on their radar as someone who is sparking conversations about skin cancer online. They've included me in this month's "Top 10" list, which includes two fellow melanoma awareness advocates that I highly respect and admire--Chelsea Price and Susan Hayes. To be frank, I don't know how the heck I made it onto the same list as these superstars, but I feel very flattered and thankful for the opportunity to keep spreading my message. Apparently someone is listening! :)

Read the full press release and check out all the other awesome blogs that made the cut.

Read my skin cancer story in U.S. News

Happy first day of summer! Before you head outside to get your tan on, read about my experience with melanoma in this article that was published in U.S. News earlier today.

Thank you so much to Donna Regen a.k.a. Melanoma Mama for sharing this article on my Facebook page! I did the interview months ago and I had almost forgotten about it. As always, I'm happy to be sharing my experience in hopes that it will prevent one more person from being diagnosed with this very deadly type of skin cancer.

Peace, love & sunscreen.

Meeting the governor

Oregon Gov. Kitzhaber signs off on the Oregon tanning ban. I'm second from
the right. Image: Jeremy Rush / Knight Cancer Institute

I've gotten to cross quite a few items off the bucket list this spring. Here's a photo of me with Oregon Gov. John Kitzhaber (plus Dr. Brian Druker and a handful of Oregon legislators) at the House Bill 2896 signing ceremony last week. It was deeply gratifying to be involved in the passage of this important piece of legislation. I hope other states are taking note. Oregon was the third state in the nation to pass a bill limiting minors under age 18 from using indoor UV tanning beds. The law will go into effect January 2014.

Also, just posted today--Read about my experience with tanning and melanoma on the OHSU Knight Cancer Institute website.

May madness

Portland Melanoma Walk 2013

I've had a busy, busy, busy month. We had the Portland Melanoma Walk on Saturday, May 11. The event surpassed all my expectations--almost 300 attendees and we've raised $35,000 and counting. The walk has more than doubled since 2012, which I'm thrilled about. As a volunteer-run event, I think we've made amazing progress with the limited resources we have. There seems to be quite a bit of potential for continued growth, too, so all the chaos seems to have been worth it.

Renting port-o-potties: the less glamorous aspects of event planning

A day after the walk, I flew to Austin, TX for work. I wish I'd had more time to spend being a tourist! I also wish I'd had a bit more time to catch up on sleep before the trip. I was probably still a little sleep deprived from waking up at 3:30 a.m. that Saturday.

Austin, TX!

Now I'm back in Portland. Still busy, busy. Looking forward to summertime when I can zone out, curl up with a trashy beach read, and spend more time catching up with friends. August looks promising? :)

So proud of my fellow "molemates" for all the great things you're doing to support skin cancer awareness this month.

Legislators approve teen tanning bed ban in Oregon

After much back and forth, both the Oregon Senate and the House of Representatives have passed House Bill 2896, which--once signed by the governor--will ban minors under age 18 from using UV tanning devices. Oregon will be the third state (following California and Vermont) in the nation to implement such a ban.

I was thrilled to hear the news just days before the Portland Melanoma Walk. As many of you know, I traveled to our state capitol twice this spring to testify in support of the teen tanning ban.

Teenagers: Feel free to hate me. The only thing more "devastating" than being told you're not allowed to tan is to be told "you have melanoma."

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 :)

A tribute to Ashley Trenner (1972-2013)

Ashley Trenner celebrating her 40th birthday.

Blogging about melanoma and raising awareness for skin cancer in my community has its perks. I've met some of the most inspiring people I know, and most recently, I had the opportunity to testify in front of the Oregon State legislature. But there's a downside to raising awareness about a disease that kills 1 in 8 people who receive its diagnosis: melanoma kills people I care about.

After testifying in Salem, I heard about Ashley Trenner on the local news. Ashley was a stage IV melanoma patient whose final wish was to inform people about the dangers of UV exposure. I was touched by Ashley's story. I could totally relate--I used to love tanning beds, too, until I was diagnosed with melanoma in 2010. I reached out to her mother, Karen, to ask permission to share Ashley's story at the Portland Melanoma Walk this May.

Ashley at hospice. Melanoma is so much more
than just skin cancer.

I was deeply saddened when I learned about Ashley's passing on Friday, March 15. While I never had the opportunity to meet Ashley personally, my heart goes out to all her friends and family.

I encourage you to read and share Ashley's warning about melanoma, which is posted on her friend Tracie's blog. Here's a quick excerpt:

"I want to help people to be knowledgeable about Melanoma. It’s a cancer that’s not taken seriously. The majority of people say, 'Oh, it's just skin cancer, your lucky.' If not detected early skin cancer is deadly. It’s so important to get regular skin checkups by a dermatologist. Also don’t procrastinate if you see something suspicious. I didn't listen when I was warned about the dangers of tanning beds and not using sunscreen. I can't take back my poor decisions but I HOPE to help others make better decisions about not using tanning beds."

Read more.

My trip to the Oregon House Health Care Committee

Me testifying at the Oregon House committee hearing. Photo: Jeremy Rush.

Let me begin with a spoiler: On Wednesday afternoon, Oregon House Bill 2896 passed unanimously through the Oregon House Committee on Health Care! That means we're one step closer to banning minors under 18 from using UV tanning beds in Oregon.

Now, let me rewind a bit. Earlier this week, I got to drive down to Salem and tell my story about tanning beds and skin cancer to the committee. I was one of three patients who testified (special shout out to my friend Mark Williams, who gave a fantastic testimony). Three experts also spoke in favor of the bill, including world-renowned cancer researcher Brian Druker.

Me and Brian Druker, M.D. Photo: Jeremy Rush.

Several friends have asked me if I was nervous at the hearing. Of course I was nervous! I'd never been to a hearing like this before and I had no idea how the representatives would react to my testimony. Plus, I've been following how similar bills have been proposed in other states. Learning about Chelsea's recent experience in Virginia was also a bit disheartening.

Fortunately, as I told my story about using tanning beds and my subsequent melanoma diagnosis, members of the committee seemed engaged and many nodded their heads when I shared how I begged my mom to let me go tanning in 10th grade. Some of the key concerns I expressed in my testimony are:

• That teenagers are unaware how serious skin cancer can be.
• Even if they know tanning is dangerous, they may engage in risky behavior because of influence by peers.
• A large number of high school students use indoor tanning beds, especially before prom and senior portraits. Even smart, high-achieving students are worried about their appearance.
• Tanning beds use is very poorly regulated. Most tanning salons I visited let me tan for the maximum time and did not take into consideration my naturally fair complexion or that I might burn.
• Parents are often unaware of the risks of indoor tanning, so they are unable to adequately protect their children. For example, many parents believe it's smart to get a "pre-vacation" tan or that you need to tan to produce enough vitamin D. Medical research suggests that neither of these myths are true.
• Melanoma rates in young tanning bed users are skyrocketing.

I also gave a detailed description of my melanoma diagnosis, treatment, and the anxiety I deal with knowing I may develop a second melanoma.

Talking with one of the committee members after the hearing. Photo: Jeremy Rush.

Of course, we had to hear from the opposition, which included both a local tanning industry representative and a national lobbyist who flew in from Colorado. It was frustrating to hear them speak, especially when they said things that contradicted what I had said just minutes earlier. Their arguments were predictable: that tanning beds don't actually cause melanoma, that parents should be able to monitor their own children, and that the tanning bed industry strives to encourage "smart" and healthy tanning behavior. Interestingly, the lobbyist's testimony was very argumentative. At one point, everyone in the room held their breath while he sparred back and forth with the committee chair, refusing to directly answer his question about the safety of UV tanning equipment. Ultimately, his testimony persuaded one of the more conservative committee members to vote in support of the bill.

The bill is now headed to the full Oregon House for a vote, so it's not over yet! But I do feel very lucky, not just to be alive to share my story, but also to have been chosen to speak on behalf of so many other people impacted by melanoma in our state. This is all a tremendous learning experience for me, and I hope it becomes another vehicle to raise awareness about melanoma--not just in Oregon--but across the U.S.

One year and 96 blog posts later

Last February, I did something completely outside of my comfort zone. I updated my twitter profile, bought a new domain name, and embarked on the daunting new adventure of educating the world about melanoma. I had spent months reading scientific journals about skin cancer and public health campaigns to prevent it, but I wasn't ready to talk about something so personal on such a public forum.

When I hit publish on my first post and posted a link to it on Facebook, I shivered at the thought of my friends reading it. But I fought all urges that told me DELETE DELETE DELETE. I kept it up and posted another one. And another.

I befriended a few other melanoma bloggers, including Chelsea, Carol, Rich, and Al. We all have very different stories to share, but their courage and passion for promoting awareness was (and continues to be) very inspiring.

Over the weekend, I spent some time looking over everything I've written since last February. As I transition into year two, I plan to continue trying new things that push me outside my comfort zone (like organizing the PDX Melanoma Walk this spring!) and hope to continue provoking discussion about skin cancer in young people.

Thank you to everyone who has been following me along the way!