Sun Safety Essentials!

Sun Safety Essentials

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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?
Not you?
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!

UV levels in Phoenix April 2015

http://uv.willyweather.com/az/maricopa-county/scottsdale.html

My mantra for when I teach sun safety for children is, Slip on a shirt, Slap on a hat and sunglasses, Slop on sunscreen and Seek shade outside!

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Stability

Stable melanoma

One year stable!

 

Many of my melanoma friends (aka “mela-homies” if you tend to the dorkwad side like I do) reach a place where they take a photo of themselves holding a sign that says “NED” to celebrate scan results which show “No Evidence of Disease.” NED is the best it gets in late stage melanoma. There isn’t remission status because melanoma is too sneaky in returning.

Perhaps one day I will be NED, but I had a lot of tumors and they leave scar tissue and shadows on scans so it may be difficult for me ever to be declared “NED.” My scars just may be too numerous and deep.

But, I had a CT scan yesterday and got a call from my nurse today that my results were STABLE! This is the best we could have hoped for and worth celebrating! So here is to stable scans!  My first stable scans were on Jan 27, 2014 so yesterday was my one year anniversary of stability. It is time to celebrate a year of stability!!! Hurrah!

Long overdue Keytruda dose 21 update

Once upon a September and October, I began having a few strange symptoms with my Keytruda doses including weight gain that didn’t match my calorie intake, loss of pubic hair, some hot flashes. I mentioned them after discussing them with a nurse practitioner here. I had my estrogen levels tested and menopause was ruled out. Yay!

At my November appointment, my oncologist had taken a look at my symptoms and labs and diagnosed me with metabolic disorder. I certainly have a family history of these symptoms, although I don’t know if anyone in my family has actually discussed the overarching diagnosis of metabolic disorder with a doctor in the past.

My oncologist believes these symptoms are probably something that eventually would have been diagnosed with age, but the clinical trial medications or perhaps just the stress of this cancer journey have brought on the symptoms on a good 20 years early. Thankfully they are treatable and may not need medication but sweat therapy (aka exercise!)

It was after I finished with the doctor that my triglyceride levels came back from the lab and were high enough to rate a grade 3 adverse affect which meant I couldn’t get treatment that day. I came back the next day for fasting blood work which reduced my levels from 400 to 300, but not low enough to get me off the hook for a medication. I began meds and had beautiful blood work and dose 21 two weeks late on November 21st. It went without a hitch, thank God! Now I wait to see an endocrinologist to treat medication induced metabolic syndrome.

Looking For Light in a Dark Room | Cancer Knowledge Network.

Living with chronic advanced cancer is a tough path. I understand that others around me often don’t really understand that melanoma has no remission. It’s fatiguing to deal with as a patient, family and surrounding community. And thinking about living a long life post “lab rat” (clinical trial patient) is intimidating not knowing what long term health issues may surface.

Finding ways to support this population is imperative and one of the reasons I consider myself a patient advocate. It’s nice to see my own needs considered and reflected on by other patients.

Just kidding, but for reals

Yesterday at my appointment with the nurse practitioner, we were discussing some unusual side effects I’ve been having. My trial nurse looked up a list of side effects of one of my drugs. The list was extremely long and literally included these four side effect possibilities.
Weight loss
Euphoria
Weight gain
Depression

Of course these were not listed together so perhaps we wouldn’t notice? Tonight I prayed as I opened my pill bottle.

“God, please allow this bottle to bring euphoria and weight loss as the side effects. Just kidding. Sorta. But for reals. Amen.”

I’ll let you know what happens.

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