Tuesday, October 30, 2012

Dear Folks Who Do Not Have Melanoma

That includes family and friends, co-workers, and people who meet me on the street.

I know you don't understand. How could you, though, because this word, "melanoma" hasn't been attached to you personally. I didn't understand before it was attached to me, either.

Our families, spouses, children, parents, siblings have their own fears for us and for themselves. But, even their insides are different from ours. And, to be fair, our insides don't look like theirs either. I cannot begin to tell you what living with our diagnosis is like for them. Let me tell you what it's like for me.

On the outside, the part you see, I look fine. I smile. I laugh. I work. I go about my life. No pity party here. I'm blessed and I know it and I'm grateful for each day.

Usually my insides and my mind, look pretty good, too. And even when they don't, I will usually not let you see it. Just don't you think I'm fine or tell me I'm fine. If I want to say it, those words are mine to say. They aren't yours to say for me or about me.

See, my melanoma was, hopefully and theoretically, cut out. My outer, superficial scars are healing. But we don't call melanoma "the beast" for nothing. It has more than earned that name and I know what I'm living with. And then again, I don't.

I know this disease. It has no MO. It just doesn't. I can be stage 1 today and stage 4 in a few months. Me, personally, as I write, I'm stage 3b and NED (no evidence of disease) for four years now. If this comes back, it will be stage 4. Brain or lungs according to my melanoma specialist surgical oncologist; there's a slight possibility it could come back as another primary on my body surface. I won't know until I know. Even then, I may not "know" until scans reveal something growing I had no idea was there.

I can already be harboring growing tumors somewhere and have NO IDEA! Right now I have no symptoms, but that doesn't mean I have no tumors. Lovely, huh? Those are thoughts we all have once melanoma is attached to us. We aren't always as "fine" as we look.

At least, I'm not. So please don't think I'm fine. My body either is or it isn't and I don't truly know. My mind can get the best of me at times and play games with me. And every time I get a new lump, bump, change in ANYTHING, or new symptom of any kind, my mind automatically jumps to "has melanoma returned?"

I know what I live with and because I live with it, I've educated myself about it. Trust me, I know right much. So when I try to tell you to stay away from tanning beds, to practice safe sun, to stay vigilant about your skin and moles and get all changes checked, and when I try to tell you that melanoma isn't just skin cancer...it is much more and doesn't need superficial skin to begin in, please listen. I don't want my story to become your story. And if you're related to me, really listen up because you now have melanoma in your family tree. I'm third generation melanoma.

If you cannot listen, at least, please don't flaunt your melanoma-seducing ways in my face. You don't know how much it hurts to see your unnaturally tanned self and read of your tanning and know you're courting disaster. I've been there, courted disaster and didn't even realize it, disaster won, and that's not a good place to be. Today we know what behaviors court melanoma. WE KNOW!!!! Many melanoma diagnoses don't have to happen if people would listen and heed what we now know! Not ALL melanoma is preventable, but much is. Many cases are treatable; none are curable.

Not mine and not yours if you get it. Not now, at least. So, it hasn't been "cut out and now I'm good to go". This, in all probability, if it has its way, will kill me and it will be a brutal death. It could kick in before this year is out or it can lie dormant and kick in twenty years from now. I won't know what it will do until it does it. I know what I'm up against and it's not pretty but it is what it is. I'm not as fine as you may think I am.

But I am grateful to be here and be part of a melanoma community that's doing everything it can to keep our numbers from growing. Many will join us because damage has already been done. Others will join for unknown reasons because there's still much to learn about this disease. But there are many who can avoid joining us, maybe you, if folks without melanoma will just pay attention to us.

Listen now and maybe you won't ever have people telling you that you're "fine" and you "look good" and "What's the big deal? They cut it out so get on with life." Maybe you won't ever have to learn about this disease the hard, up close and personal way. Maybe you won't ever have to pick who you talk to about this to avoid people saying things that are hurtful and ignorant.

Sigh.

So, folks who don't have melanoma, let me leave you with these parting thoughts: I've learned much I never thought I'd learn...stuff I didn't know existed. And while I'm not "fine" with what I've learned, and while I'm not always as "fine" as I look, I am one of the most grateful people you'll ever meet. I'm in a community of the most beautiful people on the face of this earth because of melanoma. And God has used this disease in ways I never could have imagined that day that I heard, over voice mail, that I had melanoma. I have seen God work wonders, do miracles, pour blessings and open my eyes and heart in ways, in my life and in the lives of others, that I would never have seen without the beast ripping into my life. I stand amazed and in awe every day. Of God's hands at work, at the people He has brought into my life, at what I see being done in the field of melanoma research, at how He's bringing the melanoma community together from around the world. I stand amazed and in awe that I am part of this. Physically I have no idea if I really am "fine." I have my days when emotionally I am far from fine. Spiritually, I soar.

And I am grateful.