Monday, June 10, 2013

friends say melanoma is no big deal

"friends say melanoma is no big deal" AND "friends don't understand your melanoma" are search terms that led someone to this blog today.

And my heart breaks. I'm seeing these same sentiments over and over in Melanoma Land. That would be on Facebook and the greater Internet. In groups and on sites. It makes me angry, too.

People, as a rule, don't get this disease until they get it. And make no mistake about it, our numbers are growing in ALL demographics, worldwide. People ARE getting it, but by then, it's too late for them to yank those words back and they are forced to understand melanoma from a whole new perspective. From the perspective of the one with instead of as the one belittling. I dare say most of us, myself included, didn't truly understand this disease until we got it either.

Let me tell you: It IS a big deal! A HUGE deal. An in-your-face-let's-talk-life-and-death deal. A scary deal. It is not, however, a deal without hope. Hope abounds because God is very present and our Help in this storm. And God is throwing out a lot of lifelines for us. There are more treatment options now than ever before that are showing very real promise. But they are still few and limited in number. And, not every option will help everyone. But we do have people, even with stage 4 brain mets, who are living better and longer than ever before. Things are starting to really look up in our world.We are a very hopeful and hope-filled people. However, melanoma is still a storm and for many, too many, it is a tsunami. This is a big deal and it needs to be understood.

The problem is that most people equate "melanoma" with skin cancer. They think it can just be cut out, stitched up, and life continues to sail along.Well. It doesn't. People with any kind of skin cancer will tell you that skin cancer IS cancer and those cancers, when they are cut out and stitched up, leave scars. They are disfiguring and emotionally scarring. Basal cell is very rarely fatal and squamous cell will kill over 2500 people in the USA alone this year. That's a big deal.

Now let me tell you about melanoma. I want it removed from the skin cancer category because it is so much, much more. It does not need skin to begin, grow, or spread in. Just because we hear tell of "moles" and "skin" the most, don't get deluded into thinking that's all you have to watch for: changing moles. That proves deadly.

Melanoma can literally begin ANY place in OR on your body that you can name except for your teeth and your hair. Start naming places. Eyes...check. Ocular melanoma. Mouth...check. Oral melanoma. Ear canal...check. Any organ. Any body part. Bones. Nose. Nail beds. Rectum. Vagina. It can travel through lymph nodes AND the bloodstream. It can be aggressive from the get-go or it can lie dormant a while and then kick into gear. It does what it wants, when it wants, and goes where it wants. It has no MO. None. Zilch. Nada.

Let me tell you something else...for those of you with friends who have had stage 0 (in situ) and stage 1 melanomas removed and you tell them it's no big deal. Their melanoma can come roaring back stage 4 in a matter of months...or never. They, like the rest of us higher staged people (I'm 3b), never know what our own melanoma will do until it does it. Those of us who are in the stage 3 and 4 range, as a rule, have access to periodic scans (depending on the doctor, facility, etc). SOME at stage 2 will be scanned. People at 0 and 1 don't get scans...OK, rarely...some do. Most don't. And let's face it, scans are no guarantee that a renegade cell, or tumor, will be caught. Many have clean scans one day and new tumor growth in a matter of weeks.

People really, really need to wake up to the truths about this disease, melanoma. It's not only melahomies in the 0-1 stages who get this "roll your eyes and yawn" reaction from people. It's people at all stages. Usually we look good. We smile. We're upbeat. We go to work or school, raise our families; from outward appearances we look like we're coping. Our emotions can be a whole other story. We usually don't choose to open up to the world, but when we do open up and share about our disease and where we are, a little compassion is called for. If you don't know what melanoma is, then ask. If you think it's "skin cancer" and no big least hear the word cancer and say "I'm sorry."

If the best you can do is some fake platitude then shut up and don't say anything. Don't tell someone it's no big deal. Don't say "oh, skin cancer." Don't say "you'll be OK." Don't say "get a grip."

Learn about this disease. Especially if you've ever been to a tanning bed. Especially if you've ever had even one sunburn. Especially if you have a family history of any kind of skin cancer or melanoma. Especially if you already have cancer, of any kind, in your medical history. Especially if you have a body of any age or either gender. Race and ethnicity offer no protection.

Melanoma is THE fastest growing cancer there is and there is no cure. Don't think this disease only happens to other people. YOU are "other people" to everybody on the face of this planet except to yourself.

Those of us who already inhabit Melanoma Land want our numbers to go down, but frankly, that will take a while. They will continue to rise for years to come. For one, most people aren't listening to us about the dangers of tanning beds and unsafe sun practices. Too many people still are not having annual skin checks. And, even if all dangerous practices ceased today, the damage that has been done is permanent and people will continue to be diagnosed with melanoma decades later. It happens every day. I was diagnosed decades after my last sunburn.

Melanoma is such a big deal that MD Anderson has a melanoma moon shot and Stand Up 2 Cancer has a melanoma dream team. Nothing says "big deal" like shooting to the moon and a dream team!

Melanoma no big deal? Every single day, around the clock, in the USA alone, 25 people die from it. Those numbers are up from last year and they'll be even higher next year. This year, in the USA alone, over 135,000 people will be diagnosed with melanoma and that includes those in situ. The more common number of diagnoses (76,690) we see doesn't include in situ (stage 0) but it should, every diagnosis counts.

Don't understand melanoma? Check out these trusted sites and learn more:
Aim at Melanoma

Melanoma Research Foundation 

The Skin Cancer Foundation

American Academy of Dermatology

Your friends with this disease need understanding. They aren't looking for the moon, just an ear. They aren't asking for a lot, just hope and to know you care. They need you to understand this diagnosis, at any stage, IS a big deal.

And I need you to understand it can happen to you and it can strike your family and chances are very good that it will. So please, read up on it, stop any damaging/deadly practices you're engaged in, get annual scalp-to-toe skin checks, and be proactive. Do a blog-site search here for melanoma and read to your heart's content. At the very least, if your attitude towards melanoma is "no biggie," then get an attitude adjustment. Seriously. No annoying smiley face.

That attitude adjustment may just save your life or the life of one you love.

That's a big deal and needs to be understood.