I am thrilled to be attending my first Mom 2.0 Summit at the end of the month! Bloggers from all over the country and even Canada are gathering in Scottsdale to share ideas and inspiration. I am lucky enough to live in Arizona so I can drive with some friends to attend!
I know many people are looking forward to soaking up our beautiful Arizona warmth and weather! And by golly, we look forward to sharing it! But, there is danger associated with our sunshine I’ve faced firsthand.
I am a fair-skinned red-head and grew up in Arizona. I wore sunscreen most of the time, never laid out in the sun nor went near a tanning bed. Yet, the UV is so extreme in Arizona, I ended up being diagnosed with melanoma (the bad skin cancer) at age 29.
I’ve been on a 6-year journey battling lung and brain tumors and want everyone to avoid what I’ve been through. Here are some tips so you can enjoy our beautiful weather and avoid injuring your own skin and risking your health.
Who wants cancer or to look old prematurely?
I thought so.
Slip, Slap, Slop and Seek Shade
UV levels are highest between 10am and 4pm. I looked up the UV levels at the Phoenician over the next 4 days. You can clearly see from the image below when you need to use sun protection!
Today was my six month follow up with the neurologist about my seizure meds. I had two things I wanted to discuss with her today. One is my daymares which are vivid and I often can’t wake from despite repeated false awakenings in my dreams. This may be caused by the Keppra I am on due to focal seizures. Although it would be unusual for it to cause new symptoms after a year. So, after some discussion about my variety of medications which may be the root of these symptoms, we came up with two plans.
Plan A is for me to reduce my Ambien dose to the new FDA recommendations for woman (5mg rather than my prescribed 10mg.) And go back on brand name Keppra just to be safe. Generic meds have the same primary ingredient as the name brand, but filler ingredients don’t have to be exactly the same. So with medications which affect brain chemistry, my neurologist is more comfortable sticking with brand name when insurance cooperates! Plan B is to reduce my Keppra (seizure med) dose from 1000mg XR to 750mg XR daily if plan A doesn’t work.
My other question for her was about my frustrations with expressing myself. I tend to be a grammar stickler, but despite repeated rereadings, I am overlooking simple misspellings and misused words in my writing. It is embarrassing and frustrating! I have noticed that in the past year my verbal aphasia has improved significantly, so we are hopeful that my brain will continue rewiring around my necrotic (dead) tumor sites. Speech therapy could help or playing some of the brain games online. We do know that my seizures affected my communication and reading so it makes sense that these areas are the slowest to recover. In the meantime, I shall consider blogging therapy and continue begging forgiveness for my grammar mistakes. It’s all a part of the journey. Isn’t cancer grand?
I have been beyond blessed in my blogging journey to have been befriended (perhaps I just declared myself her friend? Shh… details aren’t important) by Becca Ludlum who documents her own life, tech love, and journey as a parent to tweens!
Becca is a mentor to me as a parent and a blogger. I especially admire and attempt to emulate her parenting approach of actively teaching her sons to use technology with supervision and parental guidance. Instead of shielding them until they are older as I am tempted to do!
I wrote the following review on Amazon after tearing through this book in less than a day. Now I just need to go back and carry out Becca’s tips!
I’ve been dabbling in blogging and reading blogs for almost 10 years. I’ve only recently become serious about my own blogging journey. “Everything But the Posts” is the perfect springboard for the next step in my journey. Becca Ludlum’s book is perfect for a blogging newbie, dabbler, or experienced blogger looking into the next phase of for their blog. Becca has great advice on setting up your blog, improving SEO, and developing a readership and community in the social media world. She even walks you through the process of monetizing your blog and provides examples of how she did this herself! I had to refrain from highlighting almost every paragraph. The book is FULL of easy to read and implement advice and I look forward to making over my own blog with it in mind.
I am lucky enough to call Becca a friend and cheerleader/mentor in my own life and am so glad she took the time to share her wisdom and experience with the world. If you have or want to start a blog, don’t skip “Everything But the Posts!”
Abby as a writer/blogger on career day. Note the book and pencil over her ear.
I bought this book because I couldn’t wait to read it, devoured it on Kindle and then after reading it, wanted a paper copy which Becca surprised me with in a gift of mailbox love. It arrived just in time for Abby to go to career day as a writer/blogger and take it as her prop. She’d just written her own post on my blog and was inspired!
Becca has also been an advocate for sun safety and melanoma awareness. She’s been a part of Team Mela-NO-MAS in the Tucson Melanoma Walk and shared my story on her blog in 2012. Check it out here!
Becca did not ask me to review her book here or on Amazon. I just love and wanted to share it!
Bloggers and GSK Staff at GSK Philadephia Headquarters
There has been interest expressed in some of the more specific information given at the GlaxoSmithKline Melanoma Blogger Summit. I will be the first to tell you, I have a horrible memory. I also missed much of a key component of the genetic testing portion of the presentation. This was the part I was most looking forward to, but I may have needed to run to the bathroom desperately at that moment and I may have gotten a little lost on the way there. The GSK employee who told me to turn right, then right again… well, he was NOT right.
SO, no guarantees that I will have the most eloquent synopsis nor the greatest grasp of what was presented, but with a little prayer and the notes GSK provided, I will do my best to pass on what we were told!
First, that this was more of a discussion format than a formal presentation of information about up and coming advances in the melanoma world. GSK genuinely wanted to hear from patients.
At one point in the discussion, they actually mentioned a clinical trial I failed out of back in 2010 (DERMA MAGE3) I got to look at one of their research leads and thank him in person for the rare opportunity to be in a trial as a stage 3 melanoma patient. That may have been the most poignant moment of the day for me, outside of meeting a few of my online support group friends “in real life.”
You can find info for the people who were involved in this meeting listed below in a PDF list and live links. Please note that Donna’s link within the PDF is incorrect. You can find her writing here!
On Friday night you are reading ASCO (American Society of Clinical Oncology) melanoma related Abstracts on your laptop
With these books beside it at the ready
•The Tales of Beedle the Bard by JK Rowling (Potter fan)
•Small Steps by Louis Sachar (former teacher geek out)
•Missing Microbes by Martin Blaser (NPR recommendation by hubby and BFF)
•Doctor Jenner and the Speckled Monster- The search for the Smallpox Vaccine by Albert Martin
And you have a small legal pad containing a list of things to do to improve your SEO and blog post ideas.
So, if your Friday night looks like this, you might be a cancer geek. Or just geek in general.
A few weeks ago I was invited to meet with some of the team at GlaxoSmithKline (GSK) about melanoma awareness and how they can better serve the melanoma community. This sounds like a first of it’s kind meeting between a pharmaceutical company and patients. I jumped at the opportunity to travel to Philadelphia (and escape the heat and last week of school mom duties for a few days.) I got to hang out with some of the friends I’ve made through my online support group, rub elbows a bit with GSK employees, and meet representatives for four melanoma non-profits.
Bloggers (L-R): T.J. Sharpe, Anna (our GSK organizer), Steve Martin, Jen Martin, Erin Youngerberg, Rich McDonald and me!
This was my first trip ever flying by my lonesome! I’m a real grown-up now! I arrived in Philly Sunday evening and was picked up at the airport by my sweet friend Ashli. She and her sister took us (and generously allowed some of the melanoma blogger crowd to come along) to the original Tony Luke’s for must-try-while-in-Philly pork sandwiches and cheese steak. Not being a huge meat fan, I was pleasantly surprised that I enjoyed both! I can’t believe we forgot to take photos of ourselves! Boo hiss.
My first cheese steak! (I made it though about a third of this!)
Monday morning, we headed to GlaxoSmithKline for the Melanoma Summit. I walked over with Jen and Steve. Jen is much better at documenting life through photos, so she suggested we take photos outside the beautiful building. Apparently we looked suspicious because a security guard came outside to welcome us with a bit of harassment about why we were taking photos. We are TROUBLE, I tell you!
They knew I was trouble BEFORE I walked in!
Once inside, we had to be checked by security and have badges made with our pretty pixeled faces on them. We met up and had a lovely lunch with some of the GSK staff. It was nice to informally chat and get to know one another before we headed into the more formal meeting.
Hanging out before lunch!
We then went into our more formal meeting time. I was so excited to see an additional couple friends joining us by webcam! I may have made a fool of myself right away waving and yelling hello to them. 🙂 We began with introductions of each person and our relationship with melanoma. We listened to some talks by GSK doctors on their philosophy of oncology research and the newest and exciting area of genetic research and treatments. (I am hoping to post more about this based on my tweets and resources we were given- stay tuned!) Next was a panel discussion about how best to effectively communicate and educate patients and the public about melanoma and sun safety. It was very interesting and encouraging to hear the different perspectives and passions within the melanoma community! It was also amazing to be in a room of people with passion, energy, and HOPE to give back to the melanoma cause and help prevent others from our nightmare!
Caught during the meeting asking Rich to decode an acronym for me!
I did have one moment when I was “called on” during our discussion time where I blanked and fumbled for words, but overall, I felt that I communicated and kept up well. I still struggle with some aphasia and memory issues after brain radiation and meningitis. I’d been quite worried about following the discussion, live tweeting AND participating in this panel without my head exploding, but I ended up being pleased and proud at my ability to keep up. Thank God for answered prayers and thank you to those who were praying for my neurons and nerves! After the meeting, we went on a tour of the AMAZING GSK facility. The inside of the building was far-out. Glass interior walls, all open-concept work areas and large colorful cubbies for people to store their personal things. It was all clean and shiny and beautiful. It’s designed to be eco-friendly and was just an amazing space to experience.
Group photo of all involved with the Summit!
After the tour, a few of us headed to dinner together! So fun! I can’t tell you how nice it is to finally meet some of these people I have shared my heart and life with through the highs and lows of melanoma. Together we have celebrated good scans and mourned side effects and bad news. We’ve added new warriors and lost friends. It was SO good to talk in person and acknowledge the kindredship we have online is a real thing.
Dinner with now “real life” friends!
On Tuesday, we took our time getting out of the hotel. Jen, Steve and I had build a day into our trip for touristing! We headed to Redding Terminal Market for lunch and exploration. We then went and explored the Independence Hall area. I geeked out about the sites and shared WAY too much with Jen and Steve about the musical 1776, a yearly movie tradition, nay obsession, in the Douglas family. We got photos of the Liberty Bell, poked around Carpenter’s Hall, visited Ben Franklin’s grave and found touristy shops to grab some souvenirs for our kiddos. And of course some fabulous selfies of Jen, the selfie queen! We then headed to the airport for a bittersweet goodbye. I was ready to be home with my family, but I realized the importance and authenticity of the relationships I have built in my online support group. It was SO good to meet in person and realize that connection. Special thanks to the Martin’s for allowing me to tag along and never making me feel like the third wheel on the trip! Jen, thanks for letting me steal all your photos! I miss you all already and can’t wait until we meet again.
Sad Jen and I parting ways headed home to Texas and Arizona!
*GSK reimbursed my travel and expenses to attend the GSK Melanoma Summit, however, I was not asked to promote GSK or its medicines. This post is voluntary, represents my own views and I was not paid to write it.