Wednesday, January 22, 2014

More Than Meets The Eye

A few days ago I was contacted by a woman, asking me if I'd like to be added to an ocular melanoma(also known as OM)Facebook group.  When I first read the message, I thought, "How sweet of someone to reach out to me like that!" But within seconds my thoughts took a detour to the land of No-More-Denial...without my permission.  I sort of hate that place.

I did not want to be part of this group...or really it's that I did not want to "qualify" for this.  I have had melanoma (twice).  I have accepted that and daily, I try to do something good with that.  But to add another damn thing to the diagnosis list felt like too much.  I just wanted to depart from the truth, wrap myself in a favorite defense mechanism (denial), and walk on.

I wrote the woman right back, telling her I'd love to join the group.  Ugh.  Time to face the fact that I am part of this group, like it or not. Michael J. Fox rolled out some wise words with certitude, when he said, "My happiness grows in direct proportion to my acceptance..."  BOOM!  And there it was...time to accept this as reality...I AM part of this. And once I have accepted something, it's time to talk loud about it, in an attempt to educate others.

My diagnosis of Primary Acquired Melanosis  (if left untreated can lead to the development of ocular melanoma)is what got me here.  In May, 2012, it was discovered that I had PAM in my left eye, something that would require surgery, to include shots in my eyeball, the taking of a biopsy, stitches and freezing around the area...while awake!!! Needless to say, it was not pleasant. And let's not forget, the recovery and the waiting for biopsy results.  

When I tell people they should wear sunglasses, I'm not saying it just to say it. I say it because EVERYONE needs to do everything they CAN do to protect their eyes.  And the eyes of their kids.  Genetics, we can not control, but action taken to protect, we can. 

Sunglasses and hats!  That's what we can do. One thing that needs to be clear, is that not all sunglasses are created equally!  The Mayo Clinic provides a detailed guide to what needs to be considered when choosing sunglasses.  Same goes for the hats; a wide brimmed hat will provide the best eye protection.

What exactly is ocular melanoma?  The most basic way to describe it this:

Ocular melanoma is a form of melanoma that develops in the eye. It is the most common eye cancer in adults and the second most common type of melanoma. Approximately 2,000 Americans are diagnosed with ocular melanoma each year, and 50 percent of these cases spread to other parts of the body. When this occurs, it is most often fatal.

Back to the OM group invitation...So of course, after I was added to the OM group, I went to scroll through the page, to get an idea of what goes on there.  And although tragic and horrifying, sad and unfathomable, I found myself immersed in the story of a 35 year old OM warrior, Sarah Elizabeth and her journey.

She is a funny, witty, dynamic, honest, creative, raw, courageous, inspiring young woman...who may be at the end of this cancer trek. Visit her blog, Love X Infinity, Squared to read her beautiful writing.  I am beyond moved by this woman. She gives me strength to go out and teach others about this rare, but deadly cancer known as OM. 

To learn more about Ocular Melanoma, click the links below:

Behind Blue Eyes By The Who

This blog post is dedicated to Sarah Elizabeth.


Thursday, January 9, 2014

Boys Do It Too!

Most people think that, for the most part,  tanning salon goers are females.  Well, guess what?  That's not true! Males do it too.  I have a friend, a former frequent tanner, who is now reeling from the consequences of years of tanning.  In order to shed some light on the fact that men do tan, and men do get cancer from tanning, my friend, for whom I will call Owen (to protect his anonymity), offered to tell his story.

Before we get into Owen (whose diagnosis is basel cell carcinoma) and his anecdote, let's look at some of the stark facts about tanning beds, basel cell carcinoma, and melanoma...

  • The World Health Organization includes ultra violet (UV) tanning devices in its Group 1, the highest cancer risk category- "carcinogenic to humans", which also includes plutonium, cigarettes, and asbestos.

  • Just one indoor tanning session increases a person's chances of developing melanoma by 20%, and each additional session during the same year boosts the risk almost another 2%.

  • People who have had basal cell carcinoma or squamous cell carcinoma, are at an increased risk of developing melanoma.

  • Data from a recent study done at Yale ,shows that between 1990 and 2004, the number of patients under the age of 40, with basal cell carcinoma had jumped.  Between the first and last years, cases in men in that age group had risen by 40%.

  • The projected number of new cases of invasive melanoma in men (in the US) for 2013 was 45,060.

  • Young men account for 40% of the melanoma cases, BUT more than 60% of melanoma deaths.

And for the visual learners out there, if the above bleak facts didn't derail you, watch this:

Now, let's hear from Owen....

Q: At what age did you start tanning?
A: I started tanning outside in my early teens, and started going to the tanning beds around 18 years of age.

Q: How often did you go?
A: When I first started, I only went occasionally, but in my early 20s, I would go 3-5 times a week.

Q: Why did you use tanning beds?
A: I did it because I thought it made me look better.  My older brother was a model and very into his looks.  Me being the younger brother, I just did things to be like him.  My father was really big into self-image and body building.  He also has skin cancer from all of the years in the sun.  So, it was all about image.  I liked the way it would make my muscles more defined looking, which is why bodybuilders tan before competition, to detail the lines.  Men are just as concerned with self-image as women.  Men are just afraid to say that.

Q: When did you stop tanning?
A: I stopped getting in the tanning beds about 4 years ago when I had my first treatment for pre-cancerous sun damage.  However, I still continued to lay at the pool, literally everyday of the summer.  This past summer (2013) was the first time I did not go to the pool to tan.

Q: Why did you stop?
A: I see the severity of what tanning beds and the sun can do to our skin and what it did to me.

Q: What consequences have you had to endure because of tanning (i.e. - procedures you have had, etc.).
A: Going through the skin treatments every winter is really painful.  Applying the Fluorouracil for 2-3 weeks is brutal.  I am going through the process now and it is very painful.  I have also had to have skin cancer cut from my neck.

Owen during his treatment

Q: What would you tell other boys/men who tan?
A: Right now my face looks like a train wreck, so its giving me an opportunity for some of my friends to see what tanning beds and the sun can do. I tell them about the pain I am in and what I go through, as a result of trying to look good.

Q: What do you do now to stay sun safe?
A: I use sunscreen everyday.  I wear sun protective clothing as much as possible.  I am just very mindful of the sun today.

And so there you have it...
Males DO tan.
Males DO get skin cancers.

Spread this story in hopes of saving lives.  We tell our stories to help others.

"Whoever survives a test, whatever it may be, must tell the story. That is his duty."

~Elie Wiesel

Creep By Radiohead