Saturday, July 19, 2014

melanoma horror stories

I'm not going to write the blog post that searcher may have wanted. Horror stories abound, to be sure. From misdiagnoses, to doctors not listening to us, to this disease finally being caught only to have spiraled to places unforeseen, to the manifesting of black tumors spreading like wildfire, to financial loses, loses of support, family unraveling, you name it.

But you know what? Found inside each of those "horror stories," are stories of real hope. Perseverance. Faith. Keeping on keeping on. Prayers for getting through the moment and for a better tomorrow. Stories of riding out the storm even when that ride turns into a run through Heaven's Gates of Praise and into the arms of Jesus.

You will find what you look for on Melanoma Road. If you want horror stories they are there and they'll pull you down and scare you to pieces. Frankly, too many good things are happening on our road for that attitude. For the first time ever, we have treatments and trials that are knocking melanoma back for some and down for others. We still don't have that magic bullet that produces a "cure" but we'll take what we have and know more is coming down the pike. We're on the way to cures at best and making melanoma a chronic, manageable disease at worst. And right now, that "worst" is really good. For many.

Yes, 178 will die today, around God's world, from melanoma. NO, I will never downplay that fact. No matter what day you may read this, that stat will stand. For now. One day it will start to decrease. But for a while it will probably increase as past behaviors catch up with us. But keep in mind that behind that stat are real people with real families who are hurting with a hurt they've never known before. They are living the horror.

And many are also mixing that horror with deep faith. They've seen horror, and they've also witnessed and been blessed by miracle after miracle on their journey. They've seen God provide at just the right time and with just what was truly needed. They haven't gotten the miraculous healing they so desperately wanted and prayed for. But they've gotten blessings beyond belief. They know the healing is coming and it will be for all time. And while there is deep sorrow and grief, mingled with many tears, all of that is held in a tender tension of knowing they are held by God and He will not, ever, let them go. Even as one is ushered into Heaven and others are left behind...God will be with each child. HE will never leave them or forsake them. He will make a way when there appears to be no way. He will change the horror of the moment into the joy of eternity.

But this is never an easy tension. Yes, melanoma horror stories abound.

However, I want to leave you with this set of videos. Oh yeah, you'll see the horror as Eric's disease progresses. But watch his shirt in some of them. It says, "Jesus Loves Me." Listen as he talks of faith and prayers. Eric died in early August 2011, before some of our newer treatment options. OH, but what he taught! Today, many still teach these same lessons, but in their own way. They know the horror. They tell of the horror. They share the horror. But they do it so, as Eric says in one, so others know what to expect. And they share so we'll understand. And they share so we see how they live with the tension of what is happening and what is happening in realms where they cannot see. Yet. They share for many reasons, but I have yet to come across someone who shares this leg of their journey so we'll see nothing but horror. They want us to see beyond that, more than that.

For those who have gone before me, like Eric, I cannot, I will not choose to focus on the horror. They deserve far better than that. They did not focus on the horror, even when they living in the belly of it. They chose to focus on the Lord and His unending, faithful love and provision.

I can do no less.

If you want horror stories...look elsewhere.


Wednesday, July 9, 2014

Be Your Own Best Advocate When It Comes To Your Health

In various blog posts I've hit on the fact that we are our own best advocates, in Melaland, when it comes to anything associated with our health. Feel free to do a blog site search. It's time to bring those ideas together under one roof. And while this is written with "melanoma" in mind, because that's what I know, this applies to other cancers and life-threatening diseases as well.

Many of us have wonderful support systems to help advocate for us. But I've also been around long enough to know that many of us do not have good support systems. Whether you do, or don't, have someone who will make those calls, push for what you need, or go to bat for you when you simply cannot pick up the bat for yourself, there are things you need to be prepared to do if, and when, the time comes.

As a dear melahomey says, "No one wants me to live as much as I do!"

That said, and agreed with, remember: this is your life, your battle, and at the end of your days it will be your death whether you die from melanoma or from some other cause. There are things you need to know.

One. You need a melanoma specialist! That is crucial, no matter what your initial stage, as you live with melanoma at your table. While a melanoma diagnosis is no longer an automatic death sentence, many do die from it every year...and, we need to understand that having a melanoma specialist in our corner gives us the very best opportunity of living while we manage this disease. Many will do well with their melanoma and many will manage their disease. Give yourself every fighting chance. Be in the best care possible. I know people who fly across country to see their melanoma specialist. Others go out of state. I travel over two hours, each way, to see mine at Duke (I see a melanoma specialist surgical oncologist, but a mel spec onc has my records, and we've met, in case I ever need her).

Even if you are in the lower stages, I still advise seeing one. Be prepared to have a tough time getting that first appointment, though, if you are of a lower stage. But push. Be that squeaky wheel that gets the grease. Tell them you want your records seen, that you need peace of mind and to know you're doing everything you can do. Then take your records and get that second opinion. Make sure you were staged correctly. I've seen melanoma specialists change the original stage...I've seen it go down and I've seen it go up. Get your records in the hands of the best just in case you ever need him or her. This is Aim at Melanoma's link to melanoma specialists in the USA and Canada. Where you find them you'll also find surgical oncs who are mel specs and you'll find dermatologists who make melanoma and skin cancer the focus of their practice. If you are outside the USA and Canada, go online and find the melanoma organization in your country. They can help you.

Often people don't realize that there are melanoma specialists! They think any ol' oncologist will do. Or they think an oncologist who specializes in another cancer is OK. Well. No. You need a doctor who knows melanoma, who knows what's going on in the field, who can get you into the right trial for need a doc who KNOWS about the current, and best, melanoma trials. I'll be painfully honest. I've lost good melahomies because they refused to see a melanoma specialist. They liked their onc. They trusted their onc. Their onc was a general onc who, even if my melahomies didn't know they needed a specialist, the ONC knew they needed a specialist. And those oncs knew they were not mel specs.

If you have melanoma, see a specialist.

And, even then, know what's going on in the world of melanoma trials yourself. Be able to discuss the possibility of participating in a trial. Know the latest and know the greatest. Yes, your melanoma specialist will know of the top ones, but that doesn't mean he or she will know of ALL the trials that YOU might be interested in. Some people want to get in on the ground floor of brand new trials. Some want to get in more established ones. Some people are willing to travel if they meet the criteria and others aren't. Here's the go-to site for finding a trial.

The medical world isn't the only place you need to be prepared to advocate for yourself in. There's also the insurance world. Some people breeze right on through and everything the doctor orders get approved with no problem whatsoever. All the time. Rarely though will everything be happily approved forever and a day. Even the luckiest melahomey in insurance world, eventually ends up having to push for something. Some people have to push for everything, and I do mean EVERYTHING. It will vary as to insurance plans, Medicare or Medicaid.

If you have to go to bat for yourself, suit up and go. But also know that you've got a team behind you that you can use. Your nurse is a line of defense who can go to bat for you. The hospital will have someone on staff who is used to haggling with insurance companies and they are there for you. Use these valuable resources.

A lot of us have to muster our courage and grow a spine when we get a melanoma diagnosis. Rarely will everything you want or need be handed to you on a silver platter from day one. That's just the way it is. Remember: this isn't their life, their melanoma, their battle, and it won't be their death. It will be yours. Do what you need to do to live your life the absolute best way possible for your particular circumstances and health.

Be your own best advocate. And when you just don't have it in you, have at least one other person in your life that you can trust to advocate for you and see that you get what you need. But it starts with YOU!

You are worth it.

You matter and your life and battle matter.

If you are a person of faith, pray. Stay connected to God and listen to His leading. Not everyone on this road is a person of faith, but everyone has value, worth, meaning, and purpose. So...

be prepared, and understand what you are willing to do and what you are not willing to do as you face this disease. And don't settle for less.

We don't get do-overs.


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:


It is scary. It does throw you into the great unknown. It is a deadly, horrible 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.


Wednesday, July 2, 2014

Humor In Melaland

And, boy, are we a funny lot, indeed! Sometimes we can forget and sometimes others don't know. We can, and do, develop a dark humor. We laugh at doctor/hospital jokes. Heck, we LIVE them! We learn that the old adage, "might as well laugh instead of cry" often is a really good policy for dealing with all the junk we have to deal with.

I write a lot about our trials and attirude (which can be hilarious in hindsight). I write a lot trying to lift us up, remind us God is in our midst, and to hold out hope. Today, I'm feeling the need to remind us to laugh. It really is great medicine...and it's FREE! We don't have to haggle with insurance companies to get it! It really does lighten our souls and it makes us pleasant to be around. Life truly does have it's funny moments. Enjoy them! Don't let this disease, or any disease, strip away joy, your smile, your hearty laughter. And I advise that knowing that can be a hard place to get to after this diagnosis or after a death of a loved one from melanoma. I've been there.

I've been thinking about this post since yesterday...the day after Monday...the day after this blog post hit the greater Internet: Donna Regen's Melanoma Mama: Sweety Mama for Sex in Pretoria.

When I saw that I literally bust out laughing! (In the rural south where I live, we do not "burst" out laughing. WE "bust" out). I'll tell you why that's so funny. It's because this is the PSA Donna's known for: it's about her daughter, Jaime, who died from melanoma. Donna's known for her work in Melaland doing what she can so that no other parent visits their child in a cemetery because of melanoma. She's simply not known for being any other kind of "Mama." She's "Jaime's Mama," not "Sweety Mama!"

I choose to see that as God's sense of humor shining through. That "sweety mama for sex in Pretoria" was an actual search term that, for some really unsuspecting person, prompted Google to suggest one of Donna's posts. ALL of her posts touch on "melanoma" in some way. Not "sex." Not "Pretoria." Melanoma. She certainly doesn't bill herself as "Sweety Mama." And yet, Google decided Donna fit this. I have to laugh! Donna laughed. God laughed. Hopefully her reader learned. For some reason, God led that person to Donna.

We've got other humor in melaland that I'm thinking about. They've shared this photo often on Facebook ever since they took it last year at the Aim at Melanoma Walk in Charlotte, NC. Mark Williams and Rich McDonald (Hotel Melanoma proprietor), our Men in Black.

We enjoy life. We don't enjoy all aspects. We don't enjoy this disease and all that comes with it. We don't enjoy knowing that everyday 178 people, around the world, die from melanoma and countless more are added to our numbers. There is much we do not and cannot laugh at or about.

But we are human. And we've learned life is a gift. Everyday is a gift. We've learned to smile and keep going. We've learned that if WE can laugh, then what in the world is there to keep others from joining us in it? We've learned life is short. Even if we live to see 100 years, that's still "short."

So, receive the blessing of this day. Rejoice and be glad in it for it will not come again. Make the best of it and the most of it. Live it so that at the end of the day, when you lay your head down, you can say "Thank You, God, for seeing me through today in the best possible way considering all today held."

And, "Don't stop believin'!" Never, ever stop believin'!