Monday, July 7, 2014

how long to die from melanoma, Or, That Sure Ain't "Pretoria Mama with Big Booty"


But that's how it goes when you're me. My melahomey, Donna Regen, is currently basking in the fact that Google is having fun sending very unsuspecting searchers to her blog. They plug in search terms like "Sweety Mama for sex in Pretoria" and "Pretoria Mama with Big Booty" and they get HER! They plug in stuff like "how long to die from melanoma" and get ME!

Unfortunately, a lot of people plug in similar search terms, probably after they receive their very own melanoma diagnosis, and find me. It's a natural fit, I suppose. But this gives me an opportunity to shout something from the mountain tops. Please hear me:

A MELANOMA DIAGNOSIS, AT ANY STAGE, IS NOT AN AUTOMATIC DEATH SENTENCE!!

It is scary. It does throw you into the great unknown. It is a deadly, horrible cancer...no cancers are "good" but some are more treatable than others right now.

Instead of preparing to die, prepare to LIVE! Live your once-in-a-lifetime life to the fullest. Yes, you've faced your mortality...but you're here to keep looking it in the eye. Don't blink. Live. 

I know the statistics. I know the rates of diagnosis for melanoma are on a dramatic rise and will continue to rise, until they level off and then begin to decrease. I know the numbers of deaths from melanoma are also rising. But please keep things in perspective and find hope and not imminent death.

Over 139,000 people, in the USA alone, will be diagnosed with melanoma this year and that's including in situ (stage 0). Of those, 76,100 cases will be invasive. Over 9700 will die from melanoma this year. Though all numbers are on the rise, the number of deaths has, historically, lagged behind the number of those diagnosed. Most people, either through surgery, or various treatments, or both, will manage their melanoma. Most people will die from something else and not from melanoma. We will never know until we live out our days, but please stop assuming that if you have melanoma you'll, inevitably, die from it.

As my melanoma specialist surgical oncologist from Duke told me last year, "Most people do well with their melanoma. Now we have to find out why that is. Why some do well and others don't do well."
                                                 
I know and understand the urge to get online and find out all we can about this disease, or any disease we're diagnosed with. But we run the very real risk of getting bogus information and a lot of scary stories. When it comes to melanoma, go to trusted sites like Aim at Melanoma and Melanoma Research Foundation. There are some others, but this will get you started on the right path.

Even then, understand that the statistics you'll see aren't new and don't reflect what's happening in Melaland. As I write, there are some very good trials going on that are helping my fellow melahomies tremendously. Yervoy has been approved by the FDA, which, by itself has given many a new lease on life. When combined with trial drugs, it is even more potent. For many. Not every trial drug or approved treatment is working for everyone. Not everyone who has Gamma Knife or Whole Brain Radiation (WBR) will be helped. More and more information is constantly being learned about the role of genetics in melanoma, and in other cancers, and research is coming up with new treatments and many are reaping the rewards of that research (and, yes, there is overlapping between genetics and the promising trials...I'm just trying to spell things out without getting too technical for the newbie). 

And, it's because not everything helps everyone that horror stories abound, even today. But again, keep things in perspective. For every horror story, there are many, many more people living positive life-stories that bring hope. Even with stage 4 melanoma.

I don't want anyone to think that I'm downplaying the reality of melanoma. I'm not. I don't want anyone to think I'm trying to diminish those who have valiantly fought this disease and died from it. I'm not. I don't want anyone to think I diminish the battle of those who are, right now stage 4 and fighting HARD to live. I'm not.

But I DO want to say that there are many who are stage 4, have been stage 4 for close to 10 years or even longer, and are doing well with their melanoma. They love, they live, they work. They are a fabulous source of hope in this world where we, often, don't think in terms of "doing well at stage 4." Same with people who are stage 3c. They have been 3c for a long while and are doing well with their melanoma. I'm stage 3b and have been since 2008. I'm doing well with my melanoma. So far. I know the score and I know this disease.

And that's what I'm trying to say. Don't think in terms of dying from melanoma. Know that can happen, and then do everything in your power to prevent that from happening. Stay proactive with your health. Make all the dietary changes you need to make to eat healthier. Exercise. Get all changes inside, and outside, your body checked out. Be your own best advocate. Change doctors if you need to. Be sure to be in the hands of doctors who have YOUR best interests at heart and who listen to you. When it comes to melanoma, be in the hands of a melanoma specialist...that is imperative! This is Aim at Melanoma's list of melanoma specialist oncologists. Where you find them you'll also find surgical oncologists who are melanoma specialists and dermatologists who make melanoma and skin cancer the focus of their practice.

Give yourself every fighting chance possible. And maybe, just maybe your fight won't be much of a physical battle. The emotional battle will be there as this disease does work on our emotions because we never know what it will do until it does it...or doesn't do it. And if your battle DOES become physically intensive, know that there is help. There is real hope and real promise. You may just fall into the number who can manage their disease even if it means going from one treatment to another and throwing in surgeries and various radiation methods. Don't assume the worse until the worse happens...if it ever does. And all along the way, know there's support available. You don't have to live with this diagnosis alone. There's a wonderful, highly supportive melanoma community thriving on Facebook. Look me up and I'll plug you in.

Yes, you'll meet many who are in the fight of their lives for their lives. But they will inspire and encourage you. You'll learn many are fighting after a season of doing well with their melanoma. You'll meet many who are stage 4 and managing their melanoma. They're living with this disease and not dying from it. And they've been living and managing for quite a while now. They, too, will inspire and encourage you. You'll meet many all along the staging spectrum. You'll meet many who have just been diagnosed, and they'll be at every stage possible as many are diagnosed even at stage 4, not all are at the lower stages upon diagnosis. And you'll run into fear and panic. I've been there. I understand. We all do. But we also understand you have to have hope. Hope and faith are vital. Just as vital as having a melanoma specialist. If you have no hope then all the specialists in the world won't do you any good. 

Cling to hope, not fear.

Live your life not your death.

Make plans for a future not a funeral.

Know the score and know scores change.

Understand statistics and throw them away.

You are not a number. You are not a "case." You are a valuable human being and there's more to you than melanoma or any other cancer.

Don't let any disease seek to diminish you. YOU seek to diminish the disease.

And, don't think in terms of how long you have before you possibly die from melanoma, think in terms of how long you will live even though melanoma has a seat at your table.

And then live.

charis