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.
Anti-pd1 Dose 16, Trial Week 56 (I wrote this on the way home from my appointment last week, but didn’t get it posted. I’m much too lazy to go back and change the tenses, so pretend you are reading this last week!)
Great appointment today at the cancer center. Started with requesting my favorite nurse to check my port placement. It had caused some issues at my last appointment, but it was confirmed as caused by an inexperienced nurse, not port issues! Phew!
My labs looked good. My LDH (a tumor marker in blood) has officially been in the normal range for two months now! It continues to steadily go down which feels incredibly victorious!
I saw my nurse practitioner and discussed upping my SSRI (Lexapro) as expected (the dose usually needs upping after 4-6 weeks.) This fits my normal pattern. I’ve been on SSRIs for post partum depression, again for interferon (my first melanoma treatment) side effects, after I was diagnosed stage 4 and now again. It probably now something I will stay on forever. I am very comfortable that I need this due to brain chemistry issues and not some moral or spiritual failing on my part. {Soapbox} I feel it is important to bring mental illness discussion into the light and out of a place of fear and condemnation. {/Soapbox}
I also was having some left flank pain which worried me because it felt so similar to flank pain I’d had with subq (under the skin) tumors on my right side. No worries though, it’s just a muscle spasm. I am scheduled for massage next week if I can’t get in before that.
Infusion went fine. Got to catch up with a friend and his caregiver I’d met in our local support group. Requested IV fluids since they seem to help with my fatigue. I just can’t seem to drink enough ever to keep myself hydrated.
My only other anti-pd1 side effects are a slight rash around my neck and on the back of my hands.
Not a bad morning at the cancer center! Now to go celebrate my new 3rd and 4th graders since today was their last day of school! Yippee!!!
Melanoma and Skin Cancer Awareness Month is winding down with the end of May and today is the last day of school for my kiddos! This summer break we plan to do lots of swimming, playing soccer in our backyard, and geocaching. It will involve lots of time enjoying the outdoors in our beautiful desert home.
When I was first diagnosed with melanoma, I was afraid to be outside in the sun. With time and practice I have learned with a little thought and planning I can enjoy outdoor activities and still protect my skin! This is also the time of year I am purchasing new sunscreens for the summer.
Today, the Friday before Memorial Day weekend, is designated as “No Fry Friday.” A good time to do a little sunscreen and a sun safety reminder. So, if you are doing your summer sunscreen purchasing right now like I am, here are a few things to keep in mind as you consider what to buy.
SPF 30+ Sunscreen needs to be SPF 30 or higher to be effective
Broad spectrum Make sure your sunscreen protects you from both UVA (aging) and UVB (burning) radiation from the sun
Reapplication Make sure to apply generously and reapply according to the directions on the bottle
UPF clothing and hats as well as sunglasses provide additional and necessary protection when outside!
Horray for UPF swimsuits and sunglasses!
I am often asked my opinions and recommendations on sunscreen products for children and adults. Whole Foods is a good place to locate mineral based sunscreens free of nano particles and potentially dangerous chemicals like oxybenzone. I wrote about my concerns about oxybenzone in my post FAQ2: How to Evaluate a Sunscreen.
Whole Foods Market Sun and Skin Care Section
Beginning tomorrow, Whole Foods is offering 30% off Sun Care Products from May 23rd thru 26th. The family and I went to Whole Foods on Speedway to check out their selection for you.
Abby models the smooth texture of Devita sunscreen.
DeVita sunscreen rubbed in quickly with no white residue!
For my very local friends, the Whole Foods Market Oracle store remodel is due to finish and reopen at the end of August. Yay! You can follow all Tucson locations on Twitter for updates! Stay tuned for upcoming reviews of other sunscreens we tested out today. We found a few great new brands and one we’d skip! Enjoy your Memorial Day and don’t forget your sunscreen!
Thanks to Whole Foods for offering my tired children a sample without even knowing I was writing a review!
Not an ad. I purchased this product on my own dime. The link above is an Amazon affiliate link. If you buy with the link, I get a very small percentage of what you pay to help offset my review costs. I only review sunscreens which I would use on my family and myself based on basic requirements such as broad spectrum and a minimum SPF of 30.
I am currently on a plane heading to Philadelphia for a meeting being sponsored by Glaxosmithkline (GSK) for a group of melanoma bloggers and non profit representatives. We will be comparing notes on what methods of communication are best working for us, what we feel is needed and how GSK can help us spread awareness of melanoma. Also the hope in current treatments and trials as well as prevention.
One of the most exciting parts of this trip for me will be meeting some of the people who are in my online support group while we are all in Philly. I am so excited to meet Jen and Steve Martin from A Bump in the Road. Erin from Melanoma and the City will be there. T.J. Sharpe who writes a blog Patient One for Philly.com will be there as well as Rich McDonald from Hotel Melanoma.
We have some time planned for sightseeing as well. I am not the only one in our group who hasn’t been to Pennsylvania before.
For now, my flight has just left Tucson and is headed to Dallas. I was up too late and too early and am hoping to rest, although my super fancy germ mask (I swear, I should have sharpied “I’m on chemo on it not carrying some dangerous pathogen!”) and being right a super loud row behind the engines in a middle seat may keep me up this leg. Time to read my favorite magazine, Edible Baja Arizona!
Reading messages from other melanoma warriors during the Pass the Parasol campaign.
A guest post by my sweet daughter, Abigail Bishop, age 7. I didn’t edit her writing. She refers to “mela-no-mas” because of our melanoma walk team name. We just don’t have the heart to correct her because it’s so stinking cute! I also love that I asked her to tell me “what it’s like when your mom has melanoma.” She came up with the term “my experience” all on her own!
My experience with having a mom with mela-no-mas is very scary because i think she will always have mela-no-mas. I really hope my mom stops having skin cancer. My mom has skin cancer because she had a mole that changed on here back. To avoid skin cancer you have to get skin checks once a year and if you see a mole that changed tell your doctor.
Art Abby made for me after the melanoma walk. Nov 2013
When Mom has melanoma your friends will come walk with Team Mela-no-mas!
I am always sunsafe on safari!
Even if your mom has melanoma, she still might take you on your first trip to Tiffany and Co to try on jewelry!
Today is Melanoma Monday, a day to focus on raising awareness of melanoma. My friend and fellow warrior Timna from Respect the Rays made this wonderful awareness video. It’s worth the two minutes and 14 seconds to watch it. Pass it on and make sure you respect the rays! My profile picture on Facebook and Twitter have gone black in honor of my friends who I’ve lost and my fellow warriors.
Make sure to keep an eye on sunscreen expiration dates. I found a couple really old bottles last month!
A few weeks ago I was at the park with one of my best friends. She pulled out a tube of sunscreen I recognized as a freebie from the Melanoma Walk swag bag a few years ago. Being the bossy/concerned friend I am, I grabbed it, mentioned I’d loved this brand but had she checked the expiration date because they gave it away a few years ago? She insisted it was from this year. I flipped the bottle upside down and it had an expiration date of 2/12. She was shocked and borrowed sunscreen to use that day. I actually went home and found the same bottle in my drawer and tossed it right away!
I am preparing to speak to a girl scout troop about sun safety this weekend and pulled out my demo sunscreens from last year. I glanced at the expiration date and found that the sunscreen I bought last May to use in my children’s classrooms expired 3/14! Bah!
EVERY sunscreen bottle or tube has an expiration date stamped on it. I tend to hoard sunscreen bottles searching for the latest and greatest product and then shove them in my drawer when I don’t absolutely love them. I know this is the time of year people are pulling out the bottles from last summer. Although YOU know you should be wearing sunscreen all winter, right? This is a good time to do a sunscreen inventory and toss that expired sunscreen. PLEASE make sure you check your sunscreen for it’s expiration date. Also, make sure you don’t leave it outside or in your car because the chemicals will break down and cause it to not work as well! It’s not worth risking your skin to bad product!
The more you know!
*Edited to add, it’s been confirmed that expired sunscreen was distributed at the Skin Cancer Institute Melanoma Walk this year (November 2013.) PLEASE check all you bottles, including those freebies!
May is melanoma and skin cancer awareness and prevention month. The melanoma community is working to do some wonderful things for education and awareness. Last year I was blessed to have many people honor me by wearing black on melanoma Monday and it felt so good. This November at the annual local melanoma walk I had a large team of family, friends and co-workers supporting Team Mela-NO-mas. I feel like after almost five years of this journey, people are understanding melanoma better. They know it’s not “just” skin cancer. It first invaded a mole, then my lymph nodes, then my lungs and even my brain.
At this point, I am healthier than I have been in years and have real hope that I have a long future dealing with melanoma in more of a chronic disease relationship than a fatal disease. BUT that does not mean that I haven’t narrowly avoided a death sentence and may very well end up fighting for my life again. This fight has changed me in ways I never thought it would. I’m not sure if I will ever be able to communicate them. Daniel and I joke that I am “past my expiration date.” And boy am I thankful for that!
But this journey has left me restless. I am still frustrated that people close to me don’t “get it.” I see friends who have walked this journey at my side not wear sunscreen or complain to me about tan lines. It’s pretty obvious when I go to the park with them and they put sunscreen on their kids (just because I’m there) none of them are in the habit of applying it daily. Celebrating tans or complaining about tan lines developed on vacation is like rubbing salt in my wounds. And while I try to find peace with their choice, to be honest, it feels belittling to my journey. There ARE things they can do to protect themselves and their children from this disease and when they don’t take those steps, it’s tough not to take it personally.
For all my frustrations, there are people getting the message. I do have friends who diligently slather sunscreen on their kids and themselves daily. I have friends who have stopped tanning because of my story. I have friends who have had skin checks and avoided a late stage diagnosis like mine.
This month there are some wonderful campaigns going on. There are clever slogans and moving videos. I will be sharing many of those. Many of my fellow warriors are sharing their own stories. But this year, I’m not asking you to wear black for me. I’m asking you to learn from my journey to hell and back. Change your habits. Protect yourself from the sun. Check your skin. Check your kids. Make a derm appointment. Work to change your perception of a healthy glow to undamaged and protected skin. Try a new sunscreen to make it easier to wear. Do one thing for YOU and your family. I’ll wear black for me. If you wear black, do it for you, but don’t make that the only thing you do.
I had my oncologist appointment and treatment yesterday. Everything is smaller and disappearing! Yay! He compared my armpit tumor from a year ago and said it was smaller than a baseball, larger than a golf ball a year ago. New scans show it reduced to a few pieces, largest is marble sized. Really fabulous news!
We also had parent/teacher conferences and both my children have worked very hard to achieve being on the principal’s honor roll. Then the Wildcats won a very hard-fought victory last night! Amazing game and fabulous day!
Thank you all for the continued prayers!
