I love the sun. I (like most in my generation), was a sun worshiper when I was a kid. Remember when a bad sunburn was a badge of honor? Remember using baby oil to make sure you soaked up every last ray of sun and being appalled when “sun screen” was introduced? Why would anyone block the sun if they were trying to get a rockin’ suntan for the Summer? And later on in life, when you were too busy to “lay out,” remember how easy it was to cough up some dough and bake yourself every day in a tanning bed?
To be honest, especially lately, I long for the innocence of those days. Ignorance was truly bliss. Because the reality of what all of that sun exposure costs has hit home in such a personal and devastating way in the past year that I wish I didn’t know now what I didn’t know then.
The sun exposure John had as a kid growing up on a Burbank, Washington farm wearing as little as possible and then all of his life working outside is what caused his Melanoma. It always starts with the sun. That’s what his oncologist told us. Even though John has what they call an “unknown primary,” meaning they never found the original lesion that caused his cancer, it was there originally. And the sun put it there.
And now we’re faced with truly hiding from the sun as he begins a new drug called Zelboraf within the next few weeks. The biggest side effect of this drug is extreme photosensitivity (meaning he can get a blistering sunburn in less than 10 minutes if he’s not protected). So we’ve stocked up on Columbia long sleeve shirts with SPF 50 build right in (who knew they made those?) and SPF 90+ (who knew they made that?).
Zelboraf is a drug that address the BRAF mutation John has. Basically, this genetic mutation switches off the reproduction “brakes” in a cell so the cancer grows more quickly. Zelboraf re-connects that brake and slows down (even stops) cell growth. We’ve been told that his tumor could completely disappear within two weeks. That’s the good news. The not-so-great news is that the effect only lasts about six to nine months, until his extremely intelligent body figures out what’s going on and finds a work around to switch off the brakes again. Then we’re back where we started.
But it buys us time, which is the best resource we have at present. The longer he hangs in there, the better the chances that science will figure out how to cure him.
We’re also hoping that the PD1 inhibitor drug (the one in the trial he was on that WASN’T making him sick) will be approved by the FDA by the end of October and he can get back onto that before the end of the year.
That’s where we are at present. We’re heading out on the boat tomorrow for our first (and last) outing this summer, while he can still tolerate the sun. It will be a normal Sunday Summer day for us, the kind we enjoyed routinely prior to this Summer. Finding normal moments in the midst of this situation that has completely changed our lives is our best survival mechanism.
So the next time you step outside (wearing AT LEAST SPF 30, PLEASE!!), stop and thank your lucky stars that you’re still able to turn your face to the sun and drink it in without worrying about anything. And savor those moments of normalcy in your day. You never know when they’ll seem like a sweet, distant memory.