Tan-Free

Happy Skin Cancer Awareness Month!

Have you scheduled your appointment with your dermatologist yet?

What are you waiting for?

Today I am asking you to read Susan's latest post. She's the mother of Ms. Jillian, a young lady in her early 20's who is battling stage IV melanoma. Grab the tissues. This one got to me.  

Now, go spread some awareness. Please.

Self

I get a lot of joy when I read articles in magazines regarding the dangers of skin cancer. A lot of the information that is out there is only shared within the Melanoma community, so it is a nice change when I see an article in a magazine that caters to every day women.

Self posted a good article for those not yet residents of Hotel Melanoma. The article discusses how the rise in melanoma is an epidemic. They interviewed Marina Peredo, M.D., F.A.A.D, Associate Clinical Professor of Dermatology at Mount Sinai Hospital in New York and founder of Marina I. Peredo, M.D., P.C. Dermatology and Spatique Medical Spa in Smithtown, N.Y, who believes tanning beds are as dangerous as smoking and unprotected sex.

The article goes on to list ways to protect yourself from skin cancer. Read list here.

My favorite quote from the entire article is this, "With melanoma, the difference between life and death is early detection," she says. "A lot of people think, 'Maybe if I ignore it, it will go away.'" No. "If something looks unusual or different -- get it checked. A lot of the time it's nothing, but that's OK! Don't be scared of the unknown," says Dr. Peredo. "But if you do find that something is wrong, get it off your body."

That is advice we need to share, folks.

Share it.

Remember, May begins Skin Cancer Awareness month. How are you going to raise awareness?

Don't forget to find me on Facebook:  http://www.facebook.com/AdventuresWithMyEnemyMelanoma

Struggling Hard

We still live in a society where folks believe one must be tan in order to be beautiful. What woman does not want to look her prettiest on her wedding day? Right, I can't think of one either. As I have mentioned before, I track the sites that send folks to my blog every now and then. Today I noticed I received  a lot of blog hits from a site called the wedding bee. Confused and curious as to why a wedding blog would send so many people my way, I clicked on the link. It was a post titled "Tanning?"


This post was a response to a previous post where women discussed how many weeks/months they should start visiting tanning salons so that they can get the best glow. The first post even mentioned the "healthy" way to use tanning beds: "to stay healthy and to not overdose UV, you should tan once a week (12-15 min), start with low intensity (2-3 times, really depends on how quickly you can tan and what your skin tone) than switch to high intensity." Out of 19 responses to this original post, only 1 person spoke up and said that tanning is dangerous. This brave soul posted: "no, to stay healthy you shouldn't tan. there is no such thing as a "healthy glow." tanning is horrible for you."


Woo hoo! In the internet world where it is easy for people to attack you simply for disagreeing with what you believe, I find this person who stated the truth about tanning beds in a post filled with tanning bed lovers  to be very brave.


This same brave soul could not let the tanning bed discussion end even though backlash from the tanners was possible. The Bee writes, "i hope i don't get slayed for this, but guys why are you tanning??? it's so bad for you. as someone who works at a cancer hospital, i have a hard time grasping why people smoke or tan- both things that are 100% known to increase your risk of some really horrible cancers. no one leads a 100% perfect lifestyle, but there are some things that are pretty obvious. i suppose it's living in that "it will never happen to me bubble."


The determined Bee does not stop there... "I actually stumbled onto this girl's blog today and last year, she was all of us. 23, pretty and going about her happy life with her boyfriend. then she was diagnosed with stage III melanoma (with no history of bad burns, just tanning). and she's certainly still really beautiful, but she's had a rough road with multiple surgeries and chemo. and she freely admits that melanoma is terminal. as in, there's no cure. it's NOT WORTH IT."


The Bee is right. Just a little over a year ago, I was a normal 23 year old. I was enjoying life with my first live-in boyfriend, I was bonding with his child, and I was really in a happy place. Then I met Melanoma, and BOOM. What people do not realize is that even though my life is a lot less stressful these days, it will never be like it was before. Until an undetermined time, I will still have scans every 3 months to see if the melanoma has spread to my organs. If I am one of the lucky ones, I may reach a point in my life where I only have to receive CT scans once every 6 months. I will still go for treatment for the next 2 years. I will continue to hope and pray that I never advance to the next stage of Hotel Melanoma: The last and final stage---Stage IV. 


What were the responses from Brave Bee's post?

"I'm tanning for just a few weeks because I feel I'll look more healthy and I'll look nice and slim. I know this is completely ridiculous given the seriousness of what you just posted but I normally don't do it and I do get skin cancer screenings every year at the end of summer."
^At least this person is realizing how ridiculous she is being....AND at least she is visiting a dermatologist. Early detection is key. Melanoma IS curable when caught early.

"I actually just started tanning today, only because I do not want to burn to a crisp from being soo white on our cruise:) Gradual beats sudden exposure!"

Excuse me while I roll my eyes. Been there, girlfriend, look where I am now.

Brave Bee responded to these to posts: "i just ask that you read her story! i don't know her, but was just so taken by what's happened to her in the last year. limited exposure and sunscreen beats gradual." (Best response ever.)

Another response: "Definitely didn't tan before my wedding...and definitely don't plan on ever tanning! NOT worth it! Thanks OP! :)"
^This is what I like to hear!

"Its ok I understand..lol To each its own when it comes to ones body :) Some people can tolerate it some can not. It is a risk.."

^I want to yell at this chic. I tolerated tanning just fine, missy, until I got diagnosed with melanoma at age 23--less than 2 years after I stopped visiting tanning salons! You may tolerate tanning beds just fine right now. How will you tolerate telling your new husband that his bride has melanoma? How will you tolerate listening to your mom cry because she can't help you? How will you tolerate the doctors looking at you and saying "We just don't know."? So, yes, you may tolerate tanning beds right now, true, but what happens when your body fights back?

Ah, another intelligent person: "OP - I don't get it either. I tanned a few times back in high school when I was young and dumb. Never since. My grandmother passed away from melanoma. She was 44 and I never knew her. I am pale and I don't care. I don't care if I look washed out or like a piece of white paper. I am supposed to be that way! Id much rather be pasty looking than get skin cancer! I, like you, cannot understand how/why people go tanning. There isn't such a thing as getting a base. It's called use more sunscreen, wear a hat and a long sleeve shirt and stay out of the sun. We went to Jamaica for our honeymoon and I was out in the sun for several hours in the middle of the day and never got burnt - because I am really good at reapplying sunscreen. Same thing for our cruise. I just can't wrap my head around it."

And another response:  "My dad had melanoma (which was luckily caught early and removed without any radiation or chemo, he was very lucky) so I am fully aware of the risks.  But I accept going to a tanning bed this one last time (honestly, I don't care about tan lines any other time, and I tan easily so I don't worry about burning on my honeymoon or vacations).  I get regular screenings and use preventative care 90% of the other times I'm in the sun. I don't think that me going to a tanning bed a handful of times is going to dramatically increase my risk anymore than it already is, I tanned a lot as a teenager, got bad burns from the sun, was outside constantly, never wore sunscreen etc... I'm already at high risk since my dad has had it and I have a lot of moles... It's a calculated risk I'm willing to take this one last time."
^ There are so many things I could say to this bride. Instead, I'm just going to say this: Everything that YOU described, YOUR dad's history of melanoma, YOUR severe burns, YOUR tanning bed use, etc, all put you at a HIGH risk for melanoma. I hope YOU don't live to regret your laid back attitude about the dangers of melanoma. Your dad was a lucky one. Will you be? (see uncontrollable risk factors here.)

(If you haven't noticed, I have a big problem with people who have been directly affected by ANY cancer--especially lung and melanoma--and continue to do the things that directly cause said cancers. I find it to be disrespectful and ignorant.)

 This post sent a lot of people my way today (Thank you, Brave Bee!) so I can only hope that some of these newly engaged females will think twice before signing up for a new membership at Free Skin Cancer Salon. It makes me so bitter and angry because these women want to look pretty on their wedding days. To look pretty, they believe they must be tan. I, and many of my fellow melanoma warriors, simply want to live in order to be a bride..and a mother...and an old lady. 

Ironically, I opened my fortune cookie tonight and it read, "Struggle as hard as you can for whatever you believe in." I believe in Melanoma Awareness and I will struggle against society until I can struggle no more. 

***A special thank you to the special member on Wedding Bee who took a chance and shared awareness. Who is to say how many lives you changed. Thank you.

Welcome Back, Ms. Frankenstein!

I recently posted about a lymph node on the left side of my neck that had been swollen, disappearing, then it showed its ugly face again yesterday. Today, that lymph node had friends join her. Please excuse my ignorance, but I had no clue until today that you have lymph nodes behind your ears. Huh. Swollen lymph nodes cause me concern because it could mean infection or the big C. I can handle swollen lymph nodes for a few days because they usually go away. However, today I had a suspicious "area" pop up that caused me to call both sets of doctors: The Wizard in New York and Dr. Bad Mustache in Roanoke.

When I explained the symptoms--swollen lymph nodes, the sensation that my throat is closing, and the suspicious tumor/vein looking thing, she immediately called me back and said, "How fast can you get here?" Off I went.

I went first to the lab for blood work (no results yet...they aren't as fast as Sloan Kettering!) and then headed over to see Dr. Bad Mustache, who I had not seen in a year. It was nice catching up with him and hearing how interested and up to date he was on my medical history. Sloan Kettering has been sending him reports and it looks like he actually takes the time to read them. (Maybe he read them right before he walked in, either way, he knew who I was and what I am doing.)

Anyway, Dr. Mustache looked at my neck and said, "No need to ask why you are here." Ding. I do look like Frankenstein! At first glance, he was concerned that it was a blood clot. Once he started pushing around (ouch!) and actually examining me, he believes that the reason I am having all the inflammation is actually due to a response to the drug I may possibly be receiving. He said that although it hurts, this swelling is a good side effect.

Here is how he explained it: Yervoy is an immunotherapy, we want it to boost my immune system into kicking melanoma's ass. Because I have so few lymph nodes remaining in my neck due to the 3 surgeries, the lymph nodes that I do have left have to go into overdrive. He believes that the swollen nodes are a sign that my body is responding to the drug.

As far as the swollen tumor/vein looking thing? It is NOT a vein. He is not 100% sure what it is... He said that I have a lot of damage to my neck due to the surgeries and that we will keep an eye on it. If it is not better in a week, it will be ultrasound time.

Until then, I am going to chill out on the couch, wear a scarf, and eat things like mashed potatoes and ice cream. I am hoping soon I will no longer feel like someone is trying to strangle me.

Oh, the joys of Hotel Melanoma.

Do. Not. Tan.

"...But I Will Get Up."

Lately I have received messages from quite a few newly diagnosed melanoma warriors. Like I was only a year ago, they are overwhelmed, stunned, scared (what an understatement!) and buried underneath statistics and scary medical terms. They come to me to tell me that my blog has given them comfort and allowed them to feel not quite so alone. This post is for these men and women. 

I know how you feel. It was only a year ago that I heard the news that melanoma had spread to multiple lymph node basins. It was only a year ago that an oncologist looked at me and told me that I am an unusual case. Just a year ago, I was shocked into silence.

Then I started writing this blog.

However you decide to handle your cancer is completely up to you. My only advice is that you actually handle it, do not allow yourself to get stuck in the denial phase. This is your life that we are talking about. If you do not like what your oncologist tells you, go for a second opinion. If you are not sure if surgery or treatment is the best option for you, reach out to others who have experienced both first hand. Do your research.

I know it's scary. I know that scared does not begin to cover how you are feeling. Death in general is terrifying for most of us. The idea of yourself dying is paralyzing. Recently, a new molemate asked me, "How do you accept that you may be about to die?" Well, I cannot say that I have ever accepted that. Dying is not an option for me right now. Stubborn, I know, but I never gave into that fear. If I did, I do not believe I would be where I am today.

When it comes down to it, life is what it is. We have no control over how and when we will die. It could be death by melanoma or death by a vampire. None of us know. All I ask is that you do not simply accept that you are about to die just because you have received this diagnosis. No, there are not tons of options, but there are options. Call me Ms. Cheerful, but I believe attitude plays a key part in our health. No, a positive attitude cannot cure cancer, but it sure as hell can make this experience a little less difficult for you.

I know you probably feel alone. As awesome of a support group as I had last year, I still felt completely alone. I knew my family and friends were heartbroken for me and desperately wanted to be the emotional support I needed, but they could not possibly understand exactly what was running through my head. I was a 23 year old girl facing her own mortality for the first time. When my mom introduced me to the online melanoma world, I expected it to be a bunch of weirdos, people I could not connect with, sharing their melanoma stories. I never imagined I would actually post my own questions and intimate stories. Instead of being a silent observer, I made friends. (OK, we are ALL a little odd, I was right about that, but maybe that is why we get along? XO!)  I never knew how people could connect in such a way over the internet until I was diagnosed with melanoma. I have made lifelong friends thanks to the forums, Facebook, and this blog. You don't have to be alone. Reach out to us. There are so many people who have felt exactly what you are feeling.

You are going to meet people in your daily life who believe melanoma is just skin cancer. They are going to tell you to get the mole removed and get back to your life. It is easy--and acceptable--to become infuriated with these folks. However, didn't you once think the same thing? I did. Educate them. And if they still believe you are being a drama queen (or king!) then maybe they are not the type of people you need in your life anyway. Melanoma is a sneaky beast. You have done the research. You know how it works.

Lastly, do not let your normal life get placed completely on the back burner. As many people have had to remind me, I have melanoma. Melanoma does not have me.  I am not melanoma.  (And yes, sometimes I still need to be reminded of this.)

Whatever you do, do not give up. That, my friends, is when melanoma wins.

Dear 2012

Sometimes someone else says something so well that I do not need to post anything except a link to the blog and a quote from the amazing post. This time it comes from my friend Becca.

"2012 I won't ask for much, just let me live and enjoy every minute. Let me laugh, let me show love to others, let me feel the sun on my face without fear.

And if anything bad should happen...

Let me FIGHT."

~Becca C.

She read my mind.

Another Melanoma Angel.

Rest in Peace, Randi.

This morning as I was being lazy in bed, chit chatting with Mr. Spots about our NYE plans, and browsing Facebook, I saw my friend Al had posted that yet another one of our melanoma friends had recently passed away. When I saw it was Randi, the tears immediately began to flow. How could it be Randi? I just talked to her a few weeks ago. She sounded good, strong, sending me more advice about how to deal with this disease and what questions to ask my doctor....

Randi was a beautiful wife, a loving mother, and a dedicated fighter. I only knew her from the blogging and Facebook world but boy, she loved the men in her life. She fought because of them. She would tell you so.

Randi's story is a bit different than others that I have shared with you. Randi was diagnosed with stage III melanoma in 2005. She had all of her lymph nodes removed in one particular area, and then went on to living five years with No Evidence of Disease. Unfortunately, melanoma showed his ugly face in April 2011 by reappearing in her brain and then spreading to other parts of her body. 

Yes, you read that correctly. For five years, Randi was healthy. She passed away on December 29, 2011. 

When people question why I must go for scans every 3 months and why I am participating in a clinical trial even though I am "fine" now, this is why. There is no cure for melanoma. For many, I don't want to say most because that is far too negative and depressing, melanoma hides for a period of time and then reappears when you least expect it. It does not simply go away. I live in 3 month spans. If my scans are clear this next time, I will go another 3 months. If not, we will fight.

As you head out to celebrate the end of 2011 (good riddance) and the beginning of 2012, consider adding "Protect My Skin" to your resolution list. You may think you look prettier with a tan, but I am sure you would agree that you look prettier alive than dead. You may think that mole is nothing to worry about but it may be the same type of mole that began my stay in Hotel Melanoma. Consider it.

And please, as you celebrate, send a prayer to Randi's family. They have lost a beautiful wife, a loving mother, and their toughest fighter...

Rest now, Mrs. Randi. We will never be able to dance on the tables in Vegas now, sweet friend, but I promise to continue to educate, educate, educate. I know that is what you would want.

Is It Worth It?

Is your tan worth this?

Think about it.

"May I Pray For You?"

I never talk about my cancer at work. Sometimes patients will say little comments that make me wish I knew them on a personal level so that I could share with them why I am "so" pale, but I know it would be unprofessional. Today, however, something happened that made it impossible for me to keep quiet. Today I heard the words, "I have been battling Stage III Melanoma for the past five years."

I couldn't hold back.

I grabbed his arm, and said, "Oh! I have Stage III melanoma too!"

(What can I say? I meet very few people who truly understand this cancer so I got a little excited.)

There we were, a 24 year old girl & a 60 year old veteran, bonding over cancer in the middle of a busy waiting room. We swapped war stories, he told me how he is glad I did not stay with a local oncologist as he is a patient at Duke, and then he looks up quickly at me and says, "Can I pray for you?"

I assumed that this sweet veteran who has his own battle to fight was going to pray for me on his own time. Oh no, this was not his plan. He wrapped my hands with his own, bowed his head, and began to say a beautiful prayer requesting God's healing and love. When he looked back at me again, we both had tears in our eyes. He kissed my hands, looked directly in my eyes, and said, "Take it from me, I am blessed to be here. Please never give up."

I will never give up.

A Tan Shouldn't Define You

Sometimes I think Youtube is ridiculous. There are so many pointless videos that most of us never need to see. Then there are videos like these that are worth sharing with all of your friends and family---especially the young kids.

If we tell 10 teenagers that they could die from skin cancer, most of them would forget about us by the end of the day. If they see a beautiful young girl crying over having to tell her mom that she has melanoma, they will remember.

http://www.youtube.com/watch?v=aEjhgNkpoSk&sns=fb

Share it, share it, share it.

I would much rather have a painful surgery than have to to go back in time and tell my family that I have advanced melanoma. That, my friends, was the worst.

Protect the skin you're in.