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.

21 comments:

  1. Replies
    1. Thanks for reading, Karen. Blessings!

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    2. This is very touching to me. My daughter was diagnosed with stage 3 melanoma and is going through the same thing as you are. I pray daily for a cure for this horrible illness. She is 37 years old with 3 children ages 14 , 9, and 1 yr old. She was diagnosed with stage 2 during a high risk pregnancy with her daughter. After the birth of her daughter it had developed into stage 3.After cutting the melanoma out and removing over 20 lymph nodes it was discovered the cancer was in 4 of them. We live daily with the fear of it returning somewhere else in her body. As a mother it is the scariest thing I have ever had to deal with concerning my baby girl. I pray everyday for a cure. This disease is horrible for the person with it and the families and friends and I don`t think most people understand the seriousness that the person could be facing. Thank you for your touching story and getting the word out ..God Bless you!!

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    3. I had Melanoma removed on my shoulder about a year ago ...Doing great ....Go back every three months for a body scan....This is what I get for baking my body in the sun year after year when I was younger...So not worth it........

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  2. This brought me to tears! I hope many people find the time in their "busy" lives to read this. My heart goes out to every person fighting cancer as well as their families.

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  3. Bless your heart, friend! Thanks for reading.

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  4. Thanks Carol for sharing, it is so important to get the word out and you have said some very important things that I didn't even know myself! I have a son with moles or ( giant nevus) all over his body and I worry about him all the time! I have also had a different kind of cancer myself and know how important it is to be informed! Thanks for sharing and getting the word out! This helped me and I', sure will help others! God Bless You!

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  5. Your words are always so poignant, Carol. There's much to be said about external (visible) and internal (emotional) scars.

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  6. Carol this,is beautiful. Thank you

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  7. Thank you, Carol. You put my fears into words. You have said what I want to say to my friends and family, but cannot seem to get across. I pray you are FINE for a very long time!

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  8. A week ago, a dear friend told me that i should step forward about the cancer, that i needed to be the same person i used to be. 17 months ago i was diagnosed with melanoma in a early stage, doctors remove 35 lymph nodes from my neck and lots of skin. As yours, my life totally changed... and not for bad.
    I apreciate your words because they describe how the melanoma survivors feel.
    I feel so blessed to be alive ando some times guilty for the same reason, the people keep dying and i am still alive and fine and closer to God and Closer to me.
    I wish that in my country (México)we were as organized as the melanoma survivors are in other countries.

    Thank you deeply for your words.

    God bless you

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    1. Thanks for connecting with me, Pedro! How are you doing? I understand your guilty feelings, but remember, we all have our own journeys and we can't live other people's lives and they can't live ours. But, I know what you mean. I think we all feel like that sometimes.

      Are you on Facebook? If you are, please connect with me on Melanoma Prayer Center. You'll connect with other people of faith with melanoma. There's a thriving melanoma community, full of support, and I invite you to become part of it.

      May God bless you also.

      Grace and peace,
      Carol

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    2. Beautifully said!...You hit the nail on the head!…..Your words brought tears to my eyes....Lost my eye to conjunctiva melanoma and left with a deformity but am so grateful for my life...My OM reacts like skin melanoma from what I understand….It’s very rare… melanoma can never be trusted!....My scans show NED...I am one of the lucky ones...but we never know.....if I had to explain to someone how I feel about having melanoma, I would use your words...Thank you for writing this...and I pray you stay NED for a long long time...
      Love,
      Stella

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    3. Hi Stella,

      I pray you stay NED as well! Prayers, friend, and please, if you're on Facebook, connect with me at Melanoma Prayer Center or through my Rev's page. And if you aren't, please keep in touch here. Let me know how you are and any prayer needs. Blessings!

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  9. Thank you for telling my story because this sounds just like me . Melanoma is just Skin Cancer an d no big deal. But it is a big deal to us because this could come at anytime. I love this Blog and I hope that it was ok for me to post it on my pages and to a few people.

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    1. Absolutely! Share away! And thank you, Pappy! Many blessings.

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  10. Thank you for putting words to the thoughts and feelings I experience daily. God bless

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  11. God's Blessings

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  12. melanoma is mean....I lost my sister to it 2 1/2 yrs ago...she fought hard for 6 yrs...began with skin cancer and like you said it was removed and was told she was okay...when it returned 4 yrs later it came with a vengeance in her spine eating completely thru before she realized what the pain was coming from...just thought she had a pulled muscle. She fought for 2 more years with some terrible treatments with no guarantee of good results. My prayer is for everyone who is going thru this now that they will find a cure

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Thank you.