Don’t Fry Day! Don’t forget your sunscreen!

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!
REI sun protective girl's swimsuit
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 Speedway Tucson
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.

All Natural Moisturizing Sunscreen
DeVita Solar Protective Moisture SPF 30+
DeVita Sunscreen is made locally in Phoenix!

We found a new favorite sunscreen today. DeVita Solar Protective Moisture Sunscreen SPF30 Made in Phoenix, AZ. Short ingredient list. Rubbed in beautifully. All natural. Sold!

Much smoother than most zinc based sunscreens
Abby models the smooth texture of Devita sunscreen.
No chalky residue after rubbing in 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!

Free snacks for tired children!
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.

Leaving on a Jet Plane… for GSK Melanoma Summit

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!

My Mom has Melanoma by Abby

1920538_10151952324573038_1976058445_n
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.

1401821_10151744276933038_772828776_o
Art Abby made for me after the melanoma walk. Nov 2013
935995_10151703320618038_328501353_n
When Mom has melanoma your friends will come walk with Team Mela-no-mas!
1424560_10151704430058038_1175444247_n
I am always sunsafe on safari!
1276377_10151624396493038_553932804_o
Even if your mom has melanoma, she still might take you on your first trip to Tiffany and Co to try on jewelry!

Melanoma Monday

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.

 

 

Expired Sunscreen

Sunscreen goes bad
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!

Melanoma and Skin Cancer Awareness Month

Photo of Martha labeled with frame which says "I wear black for me. Melanoma Awareness."
Photo of Martha labeled with frame which says "I wear black for me. Melanoma Awareness."
I wear black for me!

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.

More good news

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!

One year ago today

One year ago today, on January 23, 2013, Danny took me for an MRI which we thought was going to be a breeze. I needed it to qualify for a new clinical trial testing Merck’s Anti-pd1 drug which was showing VERY promising results. I was set to be the first patient at my cancer center on this trial. Emotionally, we were feeling very positive at the possibilities offered with this new trial although we were a bit nervous about ending up in the chemo arm of the trial. I felt good after the MRI, so my sweet husband took me to Jerry Bob’s for breakfast.

One year ago today, just as we were finishing eating, my cell phone rang and it was my trial nurse coordinator asking if we were free to come in to sign some paperwork she had just figured out we needed to fill out. (Liar, liar, pants on fire! We won’t fall for that trick again!)

One year ago today we were ushered into an education room where my nurse practioner (my oncologist was out of town this day), trial nurse and oncologist’s nurse sat us down to tell us the MRI had shown two tumors in my brain. I needed to treat these and would not be eligible to begin the trial.

One year ago today I had a meeting that afternoon with Dr. Stea, the head of radiation oncology at UAMC to plan the Steriotactic Radiosurgery I would have within the week which would use seemingly Star Trek lasers to kill my tumors from the inside out with just one treatment.  We also planned for me to also began two chemotherapies (oral Temedor and Avastin) the very next day.

One year ago plus a few days, I responded beautifully to the treatments and got into the trial I originally hoped for just a few months later than we planned. And although my immune system attacked the dead tissue in my brain this September and 2013 seemed to be the year of brain trouble, I have not had any new tumors, brain or body, since January 23, 2013! One Whole Year!  The anti-pd1 trial has stabalized and is shrinking my tumors. I have been on this treatment longer than any other I’ve attempted (excluding the year long interferon treatment I did when first diagnosed.) We have so much hope that this stability will continue.

One year ago today was probably the scariest day of my melanoma journey so far. And although the emotions of this journey continue to be a roller coaster, I am a walking miracle today with stable disease. God has been good to us. God would still be good if I had died 6 months  or even 3 years ago. He would still carry our family; but we are very thankful for our sweet family of four being able to hike this weekend and enjoy the beautiful 80 degree Tucson weather in January! Thank you for those who have stood with us in prayer and friendship.

IMG_1073

Everyone hates steroids

“Everyone hates steroids and you just have to tough them out.” seems to be the theme I hear from doctors and other patients these days. Perhaps I have been whining too much! Oops!

Today was my every 3 week appointment for my clinical trial. I started by being called back to have labs drawn within 2 minutes of checking in! This NEVER happens! I have a port-a-cath in my chest into which they put a needle to draw labs and give me IV treatments. The needle stays in for my appointment and I have it removed after I am finished with all my appointments and treatments for the day. It saves my arm veins from multiple sticks as well as prevents damage and pain to my veins with some of the tougher medications. So, I see a RN rather than a phlebotomist for labs which takes some time with steralization of the site, removing the numbing cream, figuring out which of the two ports is being accessed (my port is a dual lumen and both sections need to be regularly flushed.) And… I had a point to talking about my lab visit today, but I seriously can’t remember it now. See? Steroids suck. Oh well, here’s a photo of a port-a-cath to go along with my pointless rambling. 

whereportisplaced_Large

Next I was seen at the cancer center today by Lois, the wonder NP. I really like her. She is smart, kind, practical and didn’t palpatate my swollen belly out of mercy! I alternate seeing her and my oncologist. Lois watches me medically, but she also is a great help with helping me have the best quality of life possible. I have gained a significant amount of water weight (10lbs) in the past two weeks, plus an additional 15 lbs added from the two months I’ve had a ravenous appetite. Thanks for that, steroids! I think Lois knew palpitating my belly was a bad idea when she saw I had pulled out the ol’ pregnancy “rubber band the pants instead of buttoning them closed” trick for the day! Keeping it real here, folks!

The great news I got today from Lois is that over the next 10 days, I am changing to a lower dose steroid (I’ve been on Dexamethasone and am switching to Prednisone.) AND reducing my dosage until I am finished with steroids entirely!

I have not been allowed to take Anti-pd1 (the clinical trial drug that has been WORKING!) since the brain symptoms began in September and I have been on the steroid. The anti-pd1 revs up my immune system and the steroids work to calm it down, so they are counter-indicated. We WANT my immune system working on my tumors, just not going crazy on dead tissue in my brain. (insert joke about dead brain tissue and intellect here.) Assuming all goes well with weaning off the steroids, I should be able to have my 9th infusion of anti-pd1 on December 2nd! I am SO excited to get back on track with the trial and kicking melanoma’s ass! SO SO SO happy to have this plan in place and a light at the end of this brain mess tunnel!

Another example of my absent mindedness of late at the end of my appointment, it wasn’t until I got into the car and felt the port still accessed when I put on my seatbest that I realized I’d left the cancer center without returning to the lab to have the needle removed! Thankfully we hadn’t left the parking lot! Things like this have been happening a lot. I  had a friend remind me I’d left a Facebook conversation mid-chat a few days ago and completely forgotten about it among other silly mistakes due to not being able to think super clearly. I cried this morning because I couldn’t find a medication and my bra. I am tired of being absent minded! SO, if I have not responded to something I should have or forgotten to do something or forgotten your last name at the melanoma walk, PLEASE forgive me. It is not because I don’t care. My brain just seems to have fallen out. If you see it, send it home!

All in all it was a really good appointment and day. Steroids suck, but I can see a finish line!!!

A couple prayer requests if God leads you to pray for me.

First, that my brain and body will cooperate with the steroid wean. Steroids are tough on the body and I’ve been on a fairly high dose for a good amount of time. Of course, I am hoping to get off these darn things ASAP, so prayers for a smooth transition are SO appeciated.

Second, that the Anti PD1 will kick back in and continue to work to reduce my existing tumors and prevent any new ones! I have seen some signs as the steroid had been reduced that the Anti-pd1 may already be kicking back in which would be incredible and not unlikely based on how it seems to work in other patients. Yay for Anti-pd1!

Third, that this brain swelling stuff will NOT return! We need my immune system working hard from my neck down on tumors in my body, but my brain needs to stay calm, remaining tumor free is good, but attacking tumors that are already dead and attacking with a vengance is something we’d like to avoid!

Fourth, that God would provide an excellent melanoma specialist for my cancer center. My oncologist is overworked and needs help! I’ve heard rumors they may be hiring someone soon so please pray for the perfect person to treat the many Arizonans who face melanoma and are treated at AZCC.

Phenomonal Halloween

Thursday, October 31 was a wonderful, lengthy appointment with my oncologist. We discussed a LOT of things but what stuck out the most, and then my trial nurse repeated after he left was that I am currently  “phenomenal.” This is somewhat paraphrases, but essentially my oncologist told me, “Two years ago, things weren’t looking too good for you and the median life expectancy at that point is 7 months (thankfully he didn’t mention that then!) but today you are doing phenomenally and I expect you to be my patient for a long long time.”
The next focus and goal for my treatment is continuing to step down the steroids and get back to infusions of the trial drug toward the end of November. In the meantime, I skipped a second infusion #10 because the trial drug would ramp up my immune system and the purpose of the steroid treatment is to calm down my immune overreaction in my brain (see auto immune meningitis post.) We also discussed a variety of options I have if I cannot successfully get off the steroid and have to leave the trial, but for now things look really great that I will be off steroids and back on anti-pd1 at the end of November. Happy birthday to me! I am honestly SO excited to get back to it! I was the first appointment of the day and it felt great to walk out of that building with good news.
Danny and I then had a lunch date and went paint color choosing for the outside of the house. I think we’ve decided so now we just need to write the check. Ugh! Our little house is going to look so nice, though!
I am in a wonderful group on Facebook made up of moms from the kids’ school. There was discussion about when the annual costume parade would be so I asked if someone would be willing to cheer as my kids passed and snap some photos because I knew I’d be at this appointment and miss. The kids came home full of excitement and both mentioned that a couple of the moms took pictures of them. I think they felt like celebrities! So sweet and such a blessing for my heart to know my kids were loved on after both expressed disappointment that I couldn’t attend their class parties. It’s tough to ask things like this sometimes because I worry that I might come across a) as an attention whore who is bringing up the cancer thing AGAIN or b) the conversation killer who is bringing up cancer again ruins the conversation about the times of parties and parades. I don’t mean to do either and my hope is that my friends know me well enough to keep moving in conversation and planning (while also doing what bossy pants me requested, of course!)

Danny and the kids carved pumpkins that night and went trick or treating. I was pretty tired and ended up having a focal seizure. I wasn’t on a therapeutic dose of anti-seizure meds, so I knew this wa s a risk. I was reading and all of the sudden the words turned to greek letters. I had no idea what they said. I was aware enough to call Danny over and verbally describe to him what was happening. It was odd but intriguing. Put a bit of a damper on the Halloween celebrations, but I think I will just up my seizure meds to a therapeutic dose and be fine. Call in to my neurologist and waiting for a call back.