What’s the Point?

Well, it’s that time again!  It’s May and that means for me and my homies with melanoma it’s our time to shine a light on the dangers of melanoma cancer (or skin cancer).  In this day and age of hashtag activism (#stopanimalabuse, #dontbully, #stopdoingthatthingidontwantyoutodo, etc), sometimes I wonder what good awareness really does.  But it’s not my job to make people stop tanning or get them to wear sunscreen, it’s my job to tell them my experiences and what I’ve learned in this process.  I’ve already had many people tell me that they got something checked because of my story, so awareness must work.  

If you’re new here, my story is not a pretty one.  Two years ago now, at the age of 29 I was diagnosed with stage 3 melanoma in my lymph nodes of my face and neck (2 years after having a small melanoma lesion on my forehead removed).  I immediately got an oncologist at Penn and a few weeks later I had a major surgery to remove all of the lymph nodes in the right side of my face and neck, underwent radiation treatments, and started ipilumimab (a promising new biochemotherapy treatment for advanced melanoma).  This wasn’t enough for me as almost exactly a year ago now, I began having seizures and it was found that I had a brain tumor and that the cancer had also spread into my hip bone and the lymph nodes in my lungs.  Things looked grim and I was given about a 6 month prognosis.  I started Keytruda and braced for the worst.  Keytruda worked wonders and has tamed all of my active cancer for the time being.  So this is great!  

And since I am still here, I can share the following promises/advice with you.  Please humor me and just read through.

1.  If I hear someone say, “It’s just skin cancer”, you will likely hear a sarcastic “I wish!” and then you will hear my whole story.  And this time I won’t skip any of the greusome details that I left out from the above abbreviated version.  You will regret saying this within earshot of me.

2.  If I see you and you have a sun burn, I will slap it.  I will.  I promise.  Maybe you’ll think of sunscreen next time to avoid a slap.

3.  If you are in the sun and I am at least familiar enough with you to know your name, you may get sprayed.  I have sunscreen in my purse at all times.  If you forgot yours, ask me.  I will always have some.

4.  There will be articles posted starting soon about the “dangers” of sunscreen.  Just don’t.  You will always be better off using it if you must be in the sun.  If you are uncomfortable using the spray on your kids (they say it’s dangerous when inhaled), do what I do, lotion on face and neck (don’t forget the ears!  This is a very common place to get melanoma) and spray on the rest of them.  Teach them to turn their heads away and hold their breath.  Even my two year old can do this.  If your child is too young to know to hold their breath, use lotion all over.  Yes, it’s a pain in the butt.  But I desperately will do what I can to make sure my kids don’t ever have to deal with this.

5.  If you are posting pics of your sunburn on social media, just know that I don’t think it’s funny or cute and I will blow up your comments section.  Now’s a good time to unfriend me if you’re going to be doing such ridiculous things.

6.  Do not ever, ever talk to me about how you still tan, how a base tan is safer, or how a tanning bed is a good reason because of whatever.  No.  Just no.  Get educated and make wise choices.  You’ll thank me when you don’t look like a leather couch at the age of 40 and when you’re not dealing with the trials of chemo, radiation, etc.

7.  Go to a dermatologist every year to get checked.  And if something pops up before then, get in sooner.  And it’s not that I don’t think derms are qualified, but my first lesion DID NOT LOOK at all like the pics they put in those “Things to look for” graphics.  PLEASE INSIST that your derm scrape and test anything that you are uncomfortable with.  Let a pathologist tell you it’s not cancer.  Melanoma can show up anywhere on your body, anywhere!  Including nail beds and your eyes.  And people of ALL races can get it.  And even kids can get it.  Please be aware of this!

8.  You do not have the time, energy, or money for cancer.  Appointments, tests, scans, treatments, all these things rule my life.  It’s a little better now than it was a few months ago, but it’s still a pain in the butt.  And the money aspect?  Let’s put it this way, every three weeks our insurance gets billed $600 to see my oncologist, $2,000 for the chemo room, chair, nurses etc, and $23,000 for the drug!  $23,000!!!!  Every three weeks!!  This doesn’t include copays and charges for PET scans, MRIs, bloodwork, medications and whatever else.  Praise the Lord we do not actually pay this amount (you all know how insurance works), but that’s the breakdown of the bill.  You don’t have the time or money for this.

9.  If I see a spot on you and point it out, it’s because I love you.  I’m not trying to make you uncomfortable or self-conscious.  Please know that.

That’s all I have for now.  I have some amazing stories to share with you this month from people who have also traveled this road.  I’m not going to try to convince you to share this specific blog post with people, but if you’re concerned about the people you love who may be putting themselves at risk, join the awareness train and share something with them, anything!  Awareness works as some people just do not know or understand.  So let’s do this!

And if you get a chance, watch this powerful short video and share it with someone you love.

Dear 16 Year Old Me  This video is amazingly powerful.  And keep in mind while you watch it that the pretty girl with dark hair and glasses who says it started in her eye has since passed away.  I share because I care.  Let’s do this!

  
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