Tuesday, June 24, 2014

afraid of melanoma stats

HELLO! Show of hands for all who can identify, or who could identify at one time...maybe when your melanoma diagnosis was still fairly new.

That term led someone to this blog and I hope they found what they were looking for. This topic needs to be addressed for those who have received this diagnosis. Yes, the stat for a melanoma diagnosis is on the rise, worldwide. Yes, the stat for dying from melanoma is, likewise, rising. This is one of the few cancers that can say that. This post isn't about the stats as they apply to a possible melanoma diagnosis. This post is for those who have received that diagnosis and a dose of stats to go along with it...or who consult the Internet Statistician (which is a really, really baaaaaad idea!)

We all get them. Some of us get more than others, depending on the doctor. When we are diagnosed and given our stage, we are told our chances of recurrence. Some people are told their chances of dying. No matter what course of treatment we decide on, we may be given stats for it working or not. Those stats can be thrown out the window if and when our stage changes...which it can only go up from where it began. We can look online and find stats for our ethnicity, gender, age, country, and we can zero in from there and get stats for our state or region. Stats for our hair color and food preferences. Stats for how many sunburns we've had or if we've used a tanning bed. You name it and there are stats for it as it's related to melanoma. We can get overwhelmed and drown in a sea of figures. We can get downright scared to death!

First: stats change and many of the ones you'll find are outdated. Particularly those surrounding your chance of recurrence and the chances of dying, at your stage, in a given time-frame. Those are going down, somewhat. Many of the available stats came out before the treatments we have now...some FDA approved and others that are in trial but showing tremendous promise for many. That all illusive cure, or cures as it will probably take more than one to "cure" all melahomies since melanoma is such an individualistic cancer, WILL happen and we're getting closer all the time.

Second: yes, all the stats you will see reflect real people with real stories. BUT, remember, there are two sides to every stat! For some reason, we are usually given the stat that reflects our chances of recurrence or of dying...and not the stat that reflects our chances of NOT having a recurrence at the stage we currently are, or our chances of NOT dying within a particular time-frame.

For example. When I was diagnosed stage 3b in July 2008, I was given this stat by my melanoma specialist surgical oncologist at Duke: I had a 30-35% chance that melanoma would return in either my brain or lungs within ten years. Note: my melanoma mole was removed from my upper left arm, hence the brain or lungs as the places a recurrence was likely to occur.

A THIRTY to THIRTY-FIVE percent chance?! Oh my! Did I quake in my shoes? Yes, indeed I did! Did my heart know fear and my ears burn at those words? Yes, indeed that happened! Did I look for melanoma behind every rock and mole? Oh yeah.

But you know what? I dawned on me that if I had a 30-35 % chance of recurrence within 10 years, then that ALSO meant that I had a 65-70% chance that it would NOT recur within ten years! Why, oh why, had the doctor not told me THAT?! Real people with real stories make up THAT stat, too! MOST people at stage 3b do well with their melanoma and when we really take THAT kind of look at the stats...most people of ANY stage do well with their melanoma. Even people with stage 4 melanoma are doing better and better all the time...many are. And I am not diminishing the battle of those who are in the fight of their lives for their lives...or of those who are entering into Hospice having exhausted all the options we now have and nothing worked for them. There are people who were diagnosed 3b when I was, who did not do well with their melanoma, and have run their race through Heaven's Gates of Praise. We are still in a place, in melaland, where not everything works for everybody, unfortunately. Remember, real people make up both sides of all stats. We're praying and working to change those numbers so the number of those who do well, at any stage, continues to go up until everyone does well and there are cures.

Have a healthy regard for the stats. Know your stats. But know both sides of your stat and have HOPE!

I'm almost six years now into that ten year stat I was given in 2008. I haven't had any recurrence and since I've passed that five year milestone, I don't live in constant fear and dread anymore. Oh, I know the score. I know it CAN happen. But that doesn't mean that it WILL happen.

So. What am I doing? I'm living my life the way I want to. Quietly and simply. I enjoy my family and adore the two cutest grandchildren God has put on the planet and He put them in my life! I'm active in my church...better be since I'm the pastor! I live the small town life in a truly small town and wouldn't have it any other way. I'm active in the online melanoma community and do my best to give hope and comfort, both as needed. But I'll also give a swift kick in the cyberpants when it's warranted. I blog. I participate in an Aim at Melanoma walk each year. In the past, I've gone to Charlotte, NC. This year I went to Chesapeake, VA.

Stats are a part of life. They are out there in abundance whether you have melanoma or not. Be smart when you encounter them. They are numbers. They are not YOU. You reside inside every stat, somewhere, that's true enough. I'm somewhere in stats about cheesecake and coffee. Tofu and cauliflower (neither of which I like or eat, but there are stats about them, so I'm on one side or the other of each stat that exists). You get my point. Stats are part of our culture and coming up with them keeps people employed.

They represent real people with real stories. They're there. Acknowledge them. Know the ones that you need to know. And lay them aside.

Here's a stat that holds for everyone: You get ONE life. You get ONE death and you WILL die at some point. All of that is 100% accurate. Don't let outdated stats prevent you from living your God-given life. Be smart, be proactive. Take care of yourself. If a recurrence happens, it happens and NOT because of a statistic! Deal with it when and if it happens. I haven't lived six years waiting for the other shoe to drop. Chances are in my favor that it won't happen.

Will my stat change if I make another four years without a recurrence? Sure it will. And I'll live being on one side or the other and I'll still know the score. I'm far from ignorant about melanoma.

But no number is going to rule my life. It's just not. I refuse to give a number that kind of power. I choose to give THAT power to God.


Saturday, June 21, 2014

A SUN Addict? Who ME?

Well. Yes. According to the latest thing being studied, mice and I just may have something in common. More than a love of peanut butter and a like of cheese, we may also have the capacity to be addicted to the sun!

I'll be 55 years old in September. I haven't sunned in a mighty long time. Hush and don't do the math. But, back when I was younger, starting when I was around 12 and on until I was around 16, I dearly loved, LOVED I tell you, grabbing my towel, the bottle of Johnson's Baby Oil, and going out in the back yard, or to the pool which was conveniently across the street from my house, and laying out. And falling asleep in the nice warm sun. And don't forget when my family went to Myrtle Beach for vacation every August. Laying out was a great way to meet beach bums! That's how I got my sunburns...and when I got my sunburns...that fired up and bit me in the form of melanoma when I was 48.

I truly did stop laying out before I graduated from high school. My maternal granddaddy had had many melanoma and skin cancers removed. He was a sawmill man and practically lived outdoors all his life. Somewhere around that time I heard family members talking about his melanomas and associating them with him being out in the sun. I really had no clue what "melanoma" really was all about, but I knew it was "cancer" and I knew that if he had it, I could get it and I knew I didn't want anything to do with any kind of cancer. So I stopped laying out. Whew. I sure thought I'd dodged that bullet!

I had no idea that I'd already done eternal damage to my skin, that my skin would never forget those burns...isn't it funny what we remember? I remember the good times associated with laying out, my skin, on the other hand, remembered I cooked it...and I certainly had no idea my skin would never forgive me. And I've been mighty good to my skin since those tanning years. Rats. Skin does not forgive. At all. 

I had no idea I may have been addicted to the sun. It felt good to lay out. It felt good to fall asleep in it. It felt good to feel good out there. It felt good to get a nice tan. See, I usually tanned. I didn't get as deeply browned as some people, but I rarely burned and I did get a nice color. I'm brunette and my skin tone has pinkish undertones, so my skin was enhanced, shall we say, by my time in the sun.

Here's a link to the recent study as it pertains to SUNtanning.

It's hard to believe that it's been so long ago (three years!) but before there was this study on the sun being addictive, there was a study on tanning beds being addictive. I have friends in the melanoma community who were tanners and who readily admit they were addicted.

For the life of me, I will never understand how those things have risen in popularity as they have. We call them tanning coffins. I don't care if David Cassidy had been in one waiting for me to join him, there's no way on God's green earth that I would ever have gotten in one and pulled the lid down over me. I'm far too claustrophobic for that. Even a bottom layer of cheese cake and the lid drizzling caramel and hot fudge on top of me when the lid was closed would never have gotten me into one. But people, too many...one is too many...get in them everyday. No David Cassidy. No cheesecake. Just those blasted UV lights that can be addicting...

And I get it. I understand. I didn't until this study about suntanning came out. Tanning, of any kind, can be addicting. It can feel soooooooo good. It can be a mood elevator. And despite what we know about tanned skin being damaged skin and despite the skin cancer warnings from reformed tanners like me, people still engage in those behaviors because they've "got to have it."

And I understand now why we're having such a difficult time getting through to so many about the need to stop tanning. Many are addicted whether they know it or not. It's easy for them to put their fingers in their ears and tune us out or tell us where to go, because they enjoy what they're doing. It feels good and they really like how they look. They think any consequences either won't happen to them, or they think that if they do get melanoma or skin cancer they'll be able to cut it out and go on...no big deal. They don't get it and they don't want to hear about any future problems. Right now life is good and they love who they are. Just like any addict, they cannot see or perceive the damage they are doing to themselves or grasp the damage that will be done to their families one day.

Addictions can be broken though. One way or another they can, and must, be broken. Go cold turkey. Wean yourself until you're completely done. Break the cycle. If you haven't started tanning in any form, don't start. Take care of your skin from the beginning.

Tanning is dangerous. It can, and will, be deadly for many. You won't know if you're in that number until you're bitten and then it will be too late. Smokers can stop smoking and reduce their chances of lung cancer. Tanners, in a way, can do the same thing. Some can stop tanning right now and never get melanoma or skin cancer. Some can stop tanning, but, like me, you will get melanoma or skin cancer at some point. I can't tell who will and who won't get it.

Don't be like me.

Listen to me, though. You really don't want to court melanoma.

No tan, no matter how it is gotten, is worth dying over.

No addiction is worth dying over. An addiction CAN be broken. It takes guts. It takes willpower. It takes time. Be addicted to LIFE! Be addicted to your SKIN and getting it healthy and keeping it healthy.

My brother is a recovering crack addict and recovering alcoholic. Though he has been doing great these past several years, he will always have to be mindful of his triggers and avoid them. He will always have to remember where he has been and look to the future and know what he wants, and needs, to do to stay clean. I've blogged about him and you're free to do a site search for those two posts.

I'm not ignorant about addictions. Is mine the same as his? Mine's not going to land me in prison like his almost did. But, both are life altering, both are very expensive to treat, both are deadly. Dead is dead.

Melanoma has changed my family just as surely as crack changed his. Different ways, different ramifications and consequences, but changed nonetheless.

If you tan, be it in the sun or in tanning beds, or in both, think of that as your "crack".

Say "no". Learn the facts. Make the necessary life changes. Appreciate the skin tone you were given by God. Take care of your skin. Don't bake it or broil it, either naturally or artificially.

My name is "Carol" and I was a sun addict.

And now I have melanoma. Stage 3b.

It wasn't worth it after all.


Thursday, June 12, 2014

Taking A Moment For Meso

Mesothelioma that is. As you know, melanoma is my cancer and the one I am most familiar with. However, I was contacted by Cameron Von St. James, husband of Heather, to join their summer campaign to raise awareness of meso. Heather is an eight year survivor, and a walking miracle. How can I pass up on the opportunity to share the story of the “Self proclaimed ‘Poster child for hope after mesothelioma’ for those suffering from asbestos disease”?

How can I pass up the opportunity to educate about a rare cancer and save some lives? Three thousand people, in the USA alone, are diagnosed each year. That means thousands are walking around with symptoms and have yet to be diagnosed. Thousands have yet to develop symptoms, but they will.

We’re all in this together. Cancerworld is a big place and some roads are better known than others. Mesothelioma Road needs some exposure and those who walk that road need those of us on other paths to do more than wave at them. So sit back, keep reading, learn something, take notes in case you ever find yourself with the symptoms, and say “hi” to Heather, for she will be our face for this disease.

Here’s Heather’s blog:  http://www.mesothelioma.com/blog/authors/heather/ This is her story, in a nutshell and in the words of her husband, “a rare mesothelioma cancer survivor who beat the odds 8 years ago when she was given only 15 months to live. Heather was diagnosed just three months after giving birth to our daughter Lily. After a life saving surgery that included the removal of her left lung, Heather is thriving more than ever!”

People with ANY kind of cancer, particularly rarer cancers, need to know there is hope! We all need stories like Heather’s! We need to know there are not only survivors, but there are thrivers! We need to know there are resources available and specialists in our cancer.

And we need to know what to look for. I’ve learned, thanks to Cameron’s invitation, that mesothelioma is difficult to diagnose. It’s often advanced by the time doctors figure out what their patient has…sounds like melanoma to me. That’s another reason I said I’d write this post…the more I learned, the more I saw my disease mirrored in theirs. People need to know that…

Mesothelioma is difficult to diagnose because the early signs and symptoms of the disease can be subtle or mistaken. Symptoms are all too frequently ignored or dismissed by people who are inclined to attribute them to common every day ailments. Sometimes patients live with symptoms for up to 6 months before being diagnosed but usually the symptoms are present for two to three months prior to a mesothelioma diagnosis.

About 60% of patients diagnosed with pleural mesothelioma experience lower back pain or side chest pain, and there are frequent reports of shortness of breath. Lower numbers of people may experience difficulty swallowing, or have a persistent cough, fever, weight loss or fatigue. Additional symptoms that some patients experience are muscle weakness, loss of sensory capability, coughing up blood, facial and arm swelling, and hoarseness.

Peritoneal mesothelioma originates in the abdomen and as a result, symptoms often include abdominal pain, weight loss, nausea, and vomiting. Fluid buildup may occur in the abdomen as well as a result of the cancer.” http://www.mesothelioma.com/mesothelioma/symptoms/

People need to know that while exposure to asbestos is considered the primary risk factor, “One of the most unique facts about mesothelioma is that the disease is characterized by a long latency period that is very often associated with the disease. The latency period is the amount of time that elapses from the first point of asbestos exposure to the point where symptoms begin to appear so that a diagnosis can be made. In some mesothelioma cases the latency period is reported to be 10 years but the average latency for the majority of cases is between 35 and 40 years. As a result, the cancer often progresses to later stages before a diagnosis is made. When diagnosed in the later stages, mesothelioma treatment options become more limited and are less effective.”

As a melanoma survivor whose sunburns caught up with me decades later, this too, resonates with me. And just like melanoma has several risk factors people don’t know about, well, so does mesothelioma...

“There are several risk factors that increase the likelihood that a person will develop mesothelioma. The primary risk factor is asbestos exposure. Exposure to this very harmful substance can significantly enhance the chances of contracting the disease. While smoking does not have a direct causal relationship with mesothelioma, it is a significant compounding factor that increases the likelihood of developing the disease. Other less common secondary factors include exposure to radiation, zeolite, simian virus 40 (SV40), and erionite.”

For more info about those risk factors please read http://www.mesothelioma.com/mesothelioma/risk-factors/

And if you have this disease, you’ll need a specialist. There are clinical trials. There’s info on where to find all of that, and more, at http://www.mesothelioma.com/. There are other blogs and you can connect with the mesothelioma community. I cannot begin to stress the importance of connecting with a community of fellow fighters.

Who knew that a young woman of child-bearing age, whose Dad had worked with asbestos…and that’s how she was exposed, could get mesothelioma and the pronouncement she’d live 15 months? Heather didn’t know. So many don’t know. We all need to know.

Thankfully, eight years later, she’s here to tell us.

Let those with ears, listen.


Saturday, June 7, 2014

There's a REASON I'm Called "Bossy" in Melaland

And it's because I am. Sigh. I'm kinda "bossy" everywhere I go. It must be in the air I breathe. (Insert annoying smiley face here). But I'm bossy because, as my dear deceased mother-in-law used to say, "I know better." And, often, she did.

I'm also referred to, sometimes, as Hotel Melanoma Chaplain Boss Queen (HM CBQ). Again, there are reasons. I've been around melaland a while now. I've seen a lot. I've heard a lot. Some people are new and I have to repeat, for their sakes, what many "old-timers" on melanoma road have heard from me before. Other people just plain are not listening. So...here we go...

IF you have any place of any concern on or in your body that is changing or problematic in any way...get it checked out. You don't need somebody telling you to go to the doctor. GO! Get it checked. If you suspect you have ANY kind of cancer, not just melanoma (which is my specialty), see a specialist of THAT organ, get the proper testing done, get something biopsied if necessary...usually, especially if melanoma is suspected, a biopsy is the ONLY way to tell what you're dealing with. Find out what you're dealing with. IF you have cancer, it is growing, and maybe spreading, while you're watching it, debating whether or not to see a doctor, and praying that it goes away.

Often, to be fair, we really don't suspect "cancer" of any kind and are completely blindsided with that diagnosis...so, the initial action may not be to see an internist of any kind. But DO see your general practitioner!  Do have someone monitoring you and who will refer you to where you need to go if you do not respond to their initial treatment. Certainly not every ache is cancer of some kind. But you know if your aches and pains aren't responding to what you're doing. And you should know the general signs of cancer such as sudden, unexplained weight loss. Simply put, be proactive now so you won't have to, possibly, be reactive later. It's your health and your life we're talking about. Keep that in mind. YOUR health and life...not your doctor's! And, a huge BTW here...being "proactive" also includes making any lifestyle changes you may need to make such as having a healthier diet, exercising, stopping smoking, no tanning beds, safe sun practices, drinking in moderation (if you drink at all), etc. Many things are linked to cancer diagnoses and many have to do with unhealthy habits...genetics and the great unknowns of cancer are another matter and ones we can't help, so, help and change what you can.

Skin is our largest organ, so in melaland, you need a dermatologist who makes melanoma and skin cancer the focus of their practice. Not all dermatologists do. Dermatology, like all areas of medicine, are specialized now. That's their prerogative. If you live anywhere within a couple hours or so of a hospital that's large enough to have a dermatology department, you can begin there. If you prefer a dermatologist in private practice, they can also help you find one. You're online, you can find one. Call their office and ask if they do full-body skin checks. If they do not, call someone else. (NOTE: in the USA, now that insurance is mandatory, you may have to go to a dermatologist that is ok-ed by your insurer and you may need a referral...check). You'll also want your dermatologist to remove your place of concern.

Even if you find a dermatologist who focuses on melanoma, that doctor is still fallible. Not all melanoma presents as the changing mole that obeys the ABCDE's of melanoma. So....trust your gut and insist that your dr trust your gut as well. Be prepared to be your own best advocate! Be prepared to find another doctor. Seriously. Do what YOU HAVE TO DO!

And, remember...not all melanoma will present itself where it can be seen! Many people don't have a known primary and many are diagnosed at stage 4 (it is internal). If you're having headaches that won't go away, or internal issues...see the proper doctor...you may not have melanoma...but you need the right doctor to find what you DO have.

Be prepared to be your child's best advocate! Pediatric melanoma (and other cancers) are on the rise. Know your child's body. Scalp to toes and soles of feet and palms of hands and all their finger and toenails. Trust your parental gut and, again, if you have to change doctors CHANGE DOCTORS.

Don't play the watch and wait game. Yes, you may win. But you may also lose and lose big time. If you are concerned and want something removed and pathed...get it removed and pathed.

Be prepared to fight for what you need. Be prepared to change doctors. Be prepared to go places you never thought you'd ever go. Be prepared to do what YOU HAVE TO DO. I cannot say that often enough.

Some cancers are on the decline...but people will still get them. Some are on the increase, like melanoma, across ALL demographics, worldwide....people WILL get melanoma.

Oh. And when it comes to melanoma, "When in doubt, cut it out." That's a mantra in melaland. Don't shave, freeze, or burn off a suspected melanoma...CUT IT OUT. For the record, a dermatologist does not have to be the one to do it. A PA at an Urgent Care facility cut out my melanoma mole and because that facility was in the Duke system, I was in the Duke system immediately upon my diagnosis. The doctor there KNEW to get me in the hands of a Duke melanoma specialist...I would never have known to do that.

SO...if you get a melanoma diagnosis...YOU need a melanoma specialist! THAT is CRUCIAL! IMPERATIVE! Your LIFE may well depend on it! A general oncologist is NOT who you need! An oncologist who specializes in another cancer is NOT who YOU need!

Aim at Melanoma has a list of melanoma specialist oncologists in the USA and Canada. Where you find them you'll also find surgical oncologists who are mel specs as well as dermatologists who focus on melanoma and skin cancer. Here's that link.

If you are outside the USA or Canada, you are online. Find the melanoma organization in your country and contact them. They will help you find one as well as navigate your system.

Blessings! Now listen to me.