Do you know Clare Oliver?

No tan is worth dying for. Clare Oliver's very personal and powerful message:

Free Skin Cancer Screenings in YOUR Area

http://skincancertakesfriends.org/

Jordin Sparks & Melanoma Awareness

It's the little things we can do that sometimes helps the most.


-MM

Life is life

In college, I wrote a short story one time about a road trip I took by myself. On the Road had always been a favorite, and when plans fell through with everyone else for a trip we'd planned, I decided to just go solo. I ended my travel story (of course) with a bit of cliched enlightenment:

"... after a few states and many miles, here's what you come to figure out: people are just people. Some live close to the freeways in dustier and smaller houses, and some live in big, lonely ones that can only be found while exasperatedly lost in the suburbs. But there's a vein that runs through all of us, whether we dare to admit it or not, and the blood that's pumping in it is our commonality. We're more alike than we are different. For a lot of us, that's scarier than the thought of being isolated. Because to admit that we're all just people is to dive into a place where others understand and have felt our own vulnerability, and where we can share little delights (like traveling to a new place) and make those damn emotional investments that our paranoia tells us are the next heartbreaks. We can't view all of life as simply as we see the houses from the freeway, but we can step back and take solace in the fact that no matter our differences, people are still just people."

It's true, isn't it? How often have you met someone famous and walked away thinking about how surprisingly normal they were? I have to remind myself of that all the time, because somehow just because a person is legendary or well-known doesn't mean they don't struggle with all the things the rest of us struggle with. No matter who you are, life is good, and life is hard.

If you life here locally, you probably saw on the news about Erika Clouet dieing in a car wreck on Labor Day. Erika was a teacher at my school. She was a newly-wed July bride, and she was 24 years old. I didn't know her well at all, and in the 2 years I knew her we probably talked a couple dozen times. But I will say that she was one of those people that you think about being a genuinely nice person. The wedding picture they keep posting in the news is one she never saw; her wedding pictures arrived the day after she and her husband were hit and killed by a drunk driver. This was the driver's fifth DUI. I don't really know if her death is any more or less tragic than the other young people I've known whose lives were taken by cancer, but it's really not the point. I just know this: Life is hard.

You've probably seen that Leroy Sievers died, too. It's a terrible loss. It's all so terrible I can hardly stand it sometimes. I try not to think it's unfair or it shouldn't be this way, but over the couple of years that I read his blog, I felt I had come to really know him, and his dieing left a surprisingly sharp pain. He made a conscious effort to be very open and honest about his feelings on his blog I guess it's no surprise that so many people have expressed feeling this way. Through his journalism he had covered 14 different wars, including Afghanistan and Iraq, but he said that his blog was the most important work that he'd ever done. He opened up a small piece of society by starting a converstaion about sickness and death, and he united thousands of survivors and caregivers under the guise of his daily posts. When someone asked him what he got out of his sometimes heart-wrenching blog, he wrote, "A daily reminder that none of us walks this road alone. What could be better than that?"

In the last 6 months, as he neared the end, it was more and more difficult to force myself to read his posts. When he sold his Jeep, that was when I knew he had come to terms with the end, and I stopped reading all together. I'm sure that some of this stemmed from my similar experience with my dad, who did a pretty good job of keeping hidden how ill he was until close to the end. The little clues would slip out, like red flags, telling me it was time to see things for myself. Regrettably, I didn't pick up on these fast enough. Fathers always seem so invincible, I guess. And like Leroy, to think of them as just as vulnerable as the rest of us will nearly break your heart.

The last few years, sometimes the loss has seemed like too much to bare. Losing Leroy, this person I never talked to, never looked in the face, never once met was not as sad to me as the other people I've had to say good-bye to, but I think served as a reminder that these things never stop happening. The end of life is an essential part of it, and though some of us are able to live in a world where reality is far enough out of eye-sight to ignore it, it still continues on. Life is tough.

Strangely enough, during this weird time, I've recently seen that I've taken a step onto a new emotional plain in my personal life. It has been a long time coming but I've progressed to a level of openness and vulnerability that I haven't found myself on in a very long while (think high school). That sounds much more dramatic than it is, really, because if it weren't for my seemingly unexplained feelings of fear then I probably wouldn't have even realized that I was in a new place that I didn't allow myself before. When these things happen it is always both shocking to find one's self here and simulateously frightening how long I denied being elsewhere. And that I denied that I could actually allow myself to love more than I did before. As many times as I've written here that there is little other choice than to live this way, it is definitely easier said than done.

Believe it or not, I think this is the "life is good" part; this is the silver lining. Like Doc Paskowitz said, "It's easier to die when you have lived than it is to die when you have not. So I say to all young people: go make beautiful memories. And when the time comes for you to go, you will not be alone." It's so difficult to get to the edge and take the leap, but it's also what life is about. So I'm trying to follow my own advise and to live in spite of the fear, in spite of the pain, and in spite of the sadness.

With the death of those around me, I want to soak up the grief and live with it, because fearing it and stuffing it down will only kill a tiny part of me. But I also want to know, at the end of my life, that I didn't allow that sadness and fear to stop me from feeling the love that I feel today. Yes, it's the scariest thing I've ever felt, because it means if I'm hurt, it will nearly devour me. But I guess you can't only make good memories. So in order to make any memories at all we have to embrace it all, even the darkness. And look for and feel the connectness between us all. That is what keeps us sane. That is what living is.

Today I'm living.

Life is good.

-MM

Catch it early!

Good piece I thought, and very informative on how skin cancer and melanoma spreads.
I plan on doing the drawing for the free stuff this week (or weekend)! Sorry, it's just that life is crazy now that school is back in session. For that reason, I'm still taking entries and will put your name in right up until the last moment.
Hope all is well with all of you!

-MM

Your Epidermis Is Showing

Can we all just take a moment to be grateful that melanoma awareness is up, research is happening and things like this are taking place:

Article: Hippy Approach to Medicine - Could it be the Cure?








And also, that this t-shirt is being made and sold some where? I mean, someone probably has this shirt on right now.




Don't forget: you have until the 17th to comment and be entered into the drawing for the free stuff!

Links

Hi internet family,
Just a reminder to let me know if you'd like to be in the drawing for the free stuff (--see the post from yesterday if you're confused).

In other news, tonight as I was trying to update my "Melanoma/Cancer Links," and I accidentally deleted them all. Yes, I think you're right, there must have been acid in the spaghetti. Why else would I accidentally delete ALL of my links? Needless to say I have made an effort to repost them. I have no idea if I forgot any, but I'm hoping that you will have some idea. So, if you notice, would you drop me a line? Don't take it personally if I left your blog off, it's 4 a.m. and I really do love you dearly. You mean the world to me. It's just that my memory is failing me.

I guess I don't have to say that I was a little more upset about Sean than I thought. Yes, Bobby, I am fine. It's just that this disease takes so many bright, vibrant people. Good, strong, wonderful, deserving people. It's really heart breaking.

Please take a moment to offer your condolences to the Shields family here. I'm sure they will appreciate it. Rest in peace, Sean.

-MM

Free Stuff, part Deux

I know this isn't your usual "hot summer read," but I recently received a book from Dr. Daniel Yarosh, CEO of AGI Dermatics. If you don't know what AGI Dermatics is, well, let me tell you. It is a "bio-pharmaceutical company that develops and markets topical prescription and over-the-counter drugs, as well as prestige skincare ingredients and products." What does that mean to you? It means that there is a skincare lab out there that "1) recognizes that DNA damage suppresses skin immunity, and 2) demonstrates that DNA repair can preserve and restore healthy young skin." Which, in a nut shell, means that there is a chance we can undo the stupid things we did to our skin earlier in life.
For more info on this good science, you can listen to a live interview with him from April 2 on wsRadio.com's Show "The Health and Beauty Revolution" here: > part 1 > part 2 and read an article in Allure Magazine where they name Remergent® DNA Repair Formula Best of Beauty (September 25, 2007) here: > article or watch the > Today Show video of Allure's review.

I've been using the Remergent for about a week now, and though it's too early to really say much, I will say it's got 30 SPF, so I put it on every morning before I leave the house, and if nothing else, it's helped with moisturizing and minimizing those fine lines around my eyes that I've noticed popped during and after Interferon treatments. As vain as I am, that's saying a lot. I mean, I'm putting on sunscreen everyday anyway, why not give my skin a chance at healing some of that damage? I plan on taking some "after" photos in a few weeks and comparing to this recent one where you can see these fine lines really starting to show up around my eyes. Wouldn't it be great if this stuff actually worked?

Kat Von B, our lovely make-up and skin care consultant (as well as melanoma survivor), swears by this stuff, and she really enjoyed reading this book. She said that Dr. Yarosh writes about technical skin issues, such as melanoma, but puts the verbage in terms that's easy to understand. Says Kat, "I thought I knew a lot about skin and skin cancer, but I learned so much more from this book. It's going to be one of my 'go-to' books when I have questions about my skin. His lab is on the cutting edge of research with regards to skin cancer, and I believe he genuinely cares about finding ways to combat it. Case in point, he just recently lost a very dear friend to melanoma and works closely with the American Cancer Society. Of all the books I've read that explain how the skin as an organ works, this is the best one I've read. If you've never heard of him, just know that he is widely recognized as a pioneer in the science of DNA repair. He and his laboratory are responsible for inventing the ingredients for brands like Estee Lauder, L'Oreal, and Shiseido. He is working on a drug which may even be able to repair DNA and prevent some skin cancers!"

The really super great news is Dr. Daniel Yarosh gave Miss Melly a copy of his book "The New Science of Perfect Skin" as well as one Remergent High Intensity DNA Repair +SPF 30 (3.4 oz in a pump bottle which retails for $95.00!!!) to give away here on the site. Yay! That means YOU get the chance to try it out, too, for absolutely nothing AND get the books to boot. Is life good or what? Comment here, kids, to be entered into the raffle! I heart free stuff and I know you do, too.

So to get you hooked on the info in the books and to get you interested in the product, Kat scored an exclusive interview with big Doc Y and passed along the dibs for you to read up on right here. Kat always has melanoma survivors' backs, and she's the absolute best about researching how to raise awareness and promote prevention, especially in young people. So it's good to read what an authority's take on that is. This interview has also got some good information about DNA repair, and I really like what he has to say about innovations in labeling sunscreen, too. Enjoy! And don't forget to comment if you'd like in on the drawing.
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Kat: In your book, you state that the next wave of sunscreens will have a new rating that will appear next to the SPF rating on the product label, called the immune protection factor (IPF). Do you see this as a better indicator of protection against DNA damage?

Dr. Daniel Yarosh: The IPF is a measure of an effect of the sun on skin. Just as the SPF measures sunburn potential, the IPF measures immune suppression potential. It seems to be a more sensitive measure of protection than just a sunburn.

K: Your company is currently working on FDA approval for a drug called Dimericine. Can you tell me how this drug will reverse DNA damage and who will see most benefit from this drug? I see this drug potentially being used to counteract or act as a melanoma prevention drug for those high risk patients, such as people who had melanoma and went through chemotherapy, immunotherapy, or biotherapy, etc. What do you think?

Dr. Y: The best approach is prevention, and Dimericine offers the promise of preventing the DNA damage that leads to melanoma. It would certainly be appropriately used by the high risk people who have already had a skin cancer.

K: You recommend protective clothing and sunscreen use for all ages. You also suggested washing clothes with Rit SunGuard (Tinosorb) to add SPF protection to clothes. I like that you emphasize prevention. How do we get younger people to stop using tanning beds?

Dr. Y: Tough question! Remember, it took an entire generation to change the image of smoking from something cool to something dirty. First, we have to stop glamorizing a tan and show images of beauty, such as Nicole Kidman, that don’t involve a tan. Second, we have to recognize that people will tan, and provide safe alternatives, like bronzers. Third, we have to make the connection between tanning and aging – getting ugly. Young women respond more to the fear of losing beauty than the fear of cancer.

K: Which antioxidants do you consider the most powerful for DNA repair and can we find them in our sunscreens?

Dr. Y: First, antioxidants don’t repair DNA. The best they can do is stop the free radicals before they damage DNA. Once the damage is done, antioxidants are out of the ballgame. But the best antioxidants are the natural ones like vitamin C, vitamin E and ergothioneine. They should also be used in combination, since no one antioxidant can go it alone.

K: Thank you so much! I really appreciate your efforts and everything you do in the name of research and science. You have been a great source of encouragement to me.

Dr. Y: My pleasure. Thanks for your support.

Interview by Katherine Bates

Like seriously.

So here's a new thing I'm doing. I downloaded this awesome bomb countdown thingy (that I also use in my classroom- the kids dig it hardcore), and I make myself write. I make myself write and I can not stop writing until the bomb explodes and the alarm sounds.

Sounds not so bad, right? Especially since I only set it for 15 or 20 minutes at a time. (?) But, here's the thing which I did not realize until I heard Jon Kabat-Zinn (thanks Candi, for the heads up on those podcasts, btw) say it the other day, and that is that writing - or rather stringing words together in a manner that is meaningful to other people and yourself- is a sincere form of meditation. And since this is the form I've been practicing for some 20 years now, this is a good way for me to force myself to bring my thoughts to the surface.

I have a quote on my wall that says "In my world, nothing ever goes wrong." I have that quote there not because I understand it or because it defines the way I look at things, but because I strive daily to think that way. I strive to believe that every day up until this one was perfect in that it brought me to this very moment, which is exactly where I need to be. That everything that has come into my life has had something really important and really wonderful to teach me, and that, therefore, there have been no mistakes.

That's so hard. Like seriously hard. No mistakes? Like none at all? What about that Beatles haircut I had that one time. Or those skinny jeans. That night in Tijuana. Or the bad boy boyfriend. Actually, all 9 of the bad boy boyfriends.

On one hand, yes, I can see that's it true- there are no mistakes. Because if I hadn't done all those goofy things I did, then I may not be here, where I am today. And it feels pretty obvious to me that this IS where I'm supposed to be, even though it's not permanent. But then I think about all these great people around me that I've just now figured out that I keep at arm's length because... because.... because why? Because I don't want to see new friends hurt the way old friends did when we thought I was going to die? Because I lost so many friends during this whole journey through cancer and I don't think I could take that again? Because of those people that couldn't accept me for who or where I was?

And what does that mean anyway, "when we all thought I was going to die." I mean, hello, I'm still going to die. And I hate to tell you this, dollface, but you are, too. Relatively speaking, we're all going to do it (no, not that, I mean we're all going to die) pretty soon. You know, like within the next hundred years. So why, after we get the all clear/no melanoma news do we pretend that death was never really there?

I remember after my brief stint in the hospital last year that as I was coming to terms with everything I was really weepy. And I wonder if I'm just allowing myself to just heal a bit here. Maybe that's why I've been so emotional- because I'm letting another layer dissipate. Because I'm opening up a little more. It has to be. Or hopefully, because here's something scary- I cried today during Project Runway. Project Runway people. Is that even possible? Like seriously.

The good news is I do see myself recently being much more real about how I feel and allowing myself to move through these things. Being honest about my emotions instead thinking I always have to be so tough or deal with them privately. That was more about me not wanting others to feel uncomfortable than about just being honest. And so now I feel like I'm moving forward. Moving through the pain of the past, moving through the pain of my "mistakes." Moving through the fear. Moving through the impermanence.
But in a really good way. In a way that cancer patients seem to understand. In a way that we all should and can understand, but maybe just lie to ourselves about because the thought of not being in control of it all is so harrowing.

Lori Hope, who I simply love, had an excerpt on her blog from Kairol Rosenthal's upcoming book, "Everything Changes: Living with Cancer in Your 20s and 30s” that I was just so blown away by. I am going to run out and snag up this book the moment it hits the shelves. Here's an abridged version of some of what she had to say: "In the midst of my cancer, I found myself surrounded by peers who had the luxury of not facing illness and death each morning when they looked in the mirror. Some have placed my proximity to death on a pedestal, as though I am a beacon who, at a young age, is bestowed the honor of looking the scary beast of death straight in the face. I want people who live free of cancer to know that everyone has the choice to become deeply familiar with their own mortality. Most young adults can’t imagine death as clearly or as vividly when they are healthy. . . It is your responsibility none the less... Young adults living with cancer are not, and never chose to be, the death and dying ambassadors from our generation... We are all dying. Once you face this sharp and weighty reality, you will be able to sit beside your young friends who have cancer with less fear... less nervousness... erase the boundary that divides us and them, the sick and the well... From this place, you can provide the very simple comfort of compassion that people living with cancer desperately want.”
Amazingly written. Have you been to that place where you look death in the face and realize for the first time that you are so much bigger than it, that you are so much more expansive and beautiful than it? So much so that none of us should ever really consider that, death, an ending? From that place you not only look your poor friend in the eye and supply some support, but you can provide your own comfort, too. You can do as Lao Tzu, that smart bastard, said- you can know at the center of your being all that you are.

And so I pray I'm there. Or at least one step closer to being in that place than I was yesterday. Even if it's a tiny little step, it's something I'm thrilled to be millimeters closer to.

And if I am, I'm going to actually open up and allow myself these new friendships.
That's right, I said it. I'm allowing new, genuine, deep, frightening close, painful, beautiful friendships with the good people that surround me. Good people that don't want me to be anything except myself. And whether it hurts or not, I am forcing myself to relish the moments within those friendships for as long as I'm granted them.

Thanks to each of you who read this and allow me to be your friend.

Aww. Hold me.

-MM

Washington Post Article on Melanoma

Special thanks to Eric Lingenfelder and Easterlygal who sent me this link a couple of weeks ago in the midst of all the Vans hubbub. Great article in the Washington Post titled Melanoma Rates Increase Among Younger Women.

The battle continues. But we'll be like Ghandi and be all zen about the battle so as to promote peace without melanoma.

-MM

Too Faced Review by Carver

In case you haven't seen, Carver has reported on her blog about the the free make-up she received from the raffle here on Ms. Melanoma. Check it out, there's good pics at the haul!

And not to worry, I've got another superfly give-away coming up again by way of my good friend Katherine who is getting us the hook-up. Remember, to get entered into the raffle, all you have to do is comment and mention that you'd like your name entered. It's that easy!

Bobby and I are on a quasi-vacay, but I have to tell you about my latest realization. Crazy!

-MM

Cancer Made Me a Shallower Person

I was reading on "My Crazy Sexy Life" just yesterday and found an entry by a woman discussing her cancer journey. She said that she had noticed an emotional cycle that she follows, where she is good with her diagnosis/NED status for a while, then she's anxious, then mad again, then depressed, then feels good for a while again, etc. It's good to read other stories like this, because I know for even the most seasoned survivor, the thought of all there is to deal with continually, while trying to lead a "normal life" can be so daunting. The scans and the waiting for results, for me, are especially killer.
But then I was listening to Elizabeth Lesser on the radio yesterday, and she made an interesting point. She said that we have to think about life as if it is a river, and we can fight it the whole way, trying to get upstream against the current, insisting that things go our way, living in a constant state of struggle. Or we can succumb to the river, let go, float, enjoy the ride, and accept where we are being taken. It is all a choice.
It's so easy to say that- so easy to say let go, let go of all the plans you made and all the dreams you had about what your life would be.
But when the time comes to fight, to do the awful treatment and have the surgery and spend so much time in recovery- when it comes time to make the choice to continue living no matter the cost- it isn't the picture we had created of our life that we are fighting for. What we are fighting for more days here, regardless of our plans, regardless of whether they are days spent floating somewhere we never planned on going or struggling against the current. And that's the thing that those cancer patients you talk to( -you know, the ones with that light behind their eyes-) seem to have gotten during their journey. That any day here is worth the fight.
It's noble and beautiful to come out of the situation with that new view. That every breath is worth a prayer of a thousand thanks.

But how did they get there? To the point where they are really the person that is okay with letting the river take them wherever it is going? Well, according to Elizabeth Lesser, it's really not so hard to be that person, whether we have had a cancer experience or not. And this is what she said that really blew me away: she said that in order to love your life no matter what, that every single day, you have to sit still. And in sitting still, we will be faced with all kinds of things: our disappointments, and anger, or fear, sadness, guilt, or even physical pain. As all these emotions and feelings arise, she said, you take note of them objectively and without any judgment.
That's it.
That's the key to unconditional happiness.

Because, just like sneaky Mr. Miyagi using chores and car washes to teach Ralph Macchio the art of perseverance, sitting in the midst of our reality and our pain little by little teaches us that we can survive anything and still be happy in the midst of it. When we allow what is to be, then, like you are in the river, you will float along and move through it.
Crazy.
Why is it when we admit our pain that we move through it so much faster? Because reality pushes on with or without us, whether we live in denial or not? Because struggling against the current is exhausting? Because acceptance saves us thousands of minutes of grief? Because time itself is the thief?

I guess the real answer is who cares why? It just does. The river will take us exactly where we need to go. There are no accidents.
Even if we fight it, we are still being pushed to the exact place we are supposed to be the whole time.

And if it's as easy as Mrs. Lesser is telling us, if I can love my life no matter how badly it can hurt, well, I'm sitting still every day.
And I'm making it a point to float on my back from here on out.

-MM

The Coolest Thing

So I get an email last week from a melanoma survivor named Paige Wood. The very lovely and talented Paige is a musician and is touring with the Vans Warped Tour and is working with FM World Charities towards awareness of the dangers of sun exposure (you gots to check her out on YouTube, yo). And in case you don't remember, Paige was interviewed in the Current.com "Scared of Skin Cancer" vid I posted on June 11th.
So Paige invited Katherine and I to come see her show and to check out the free skin cancer screenings they were doing. And as you know, I am ALL about the promoting of the awareness and any live music show. So this was a big treat for me.
Kat Von Bates (who did the awesome Paula's Choice Interview below), always representing Too Faced and all their good efforts to help promote all things melanoma-research related, and I both agreed that this was one of the most inspirational things we've seen in a long time as far as skin cancer awareness goes. I've got to send out big ups to not only the Vans Tour and Paige, but FM World Charities and the Mole Mate Screening Technology being used at the booths.
Let me give you a little glimpse of what was going on.
First of all, if you don't know what a huge deal this is, let me just say that Vans Warped Tour has about 30,000 people visit the event every day. Think Lollapalooza (as a wise man once said). So a skin screening booth here is maximum exposure. KVB and I spoke for a while with Eric Gast (who had a very Rick Rubin vibe to him), the founder and board chairman of FM World Charities, and he had awesome things to say about using positive media to reach people instead of scary and negative images. I had no idea about this charity, but upon closer investigation, I found that this not-for-profit organization is devoted to promoting public health in a lot of ways. What I really loved about their skin cancer screenings was that FM World Charities had the idea to help screen for common illnesses, like melanoma, during concerts and other public events so that people become aware of the danger before it becomes life threatening. According to their website, "This will be useful in two ways. It will not only increase the number of individuals being screened for these conditions but, given the age of the people usually attending these events, introduce the idea of preventative health care to a young audience. For example, the incidence of skin cancers is increasing rapidly throughout the world. A small lesion that develops when a person is 20 years of age will often be ignored for years before it becomes symptomatic and life threatening. Early diagnosis and treatment is the key to avoiding these problems."
Is anyone else in love?
I just had a moment.
Plus, think about it: Melanoma has become the most common cancer in women between the ages of 25 and 29, so exposing young people to the idea of skin screenings is vitally important!
Also, I gotta say that his whole idea with using Mole Mate was to draw people in with curiosity toward the technology and process instead of fear. That's the "positive media" thing he's talking about. And the amazing part is it really works! If you don't believe me, just check out the pics taken there. These are not necessarily your typical "I'll get this mole checked out at my regular dermatologist appointment" peeps. These are everyday people, music fans and skater kids, dropping by the tent to see what's up. And that rocked my world.
So just to give you a taste of what Mole Mate technology does, here is some more info. The registration process was quick and easy with only 4 or 5 questions to get you started, as illustrated by the pic of me with my new pink hair and sweat spot on my back (it was 95 degrees out, throw me a bone here.) And the next step is just as easy- See that wand thingy pointing the guy is pointing on Kat's face? That is essentially the whole process of Mole Mate: it "is a non-invasive, rapid, and painless melanoma screening device that has been specifically designed with and for General Practitioners and skin specialists. By assisting and accelerating the diagnostic process, Mole Mate™ enables the medical professional to quickly scan and make a decision to refer a patient, excise a lesion or immediately assure them that their lesion is not suspicious." Right on the spot! How, you say, is this possible? Well, allow me to fill you in. That little wand thing takes not only an external photo of a suspicious mole, but gives a magnified dermatoscopic view of it, like so:which the doc can then look at and determine it's danger level. How friggin cool is that.

Speaking of rocking my world, Paige put on a hell of a show. Avril's got nothing on this chic. (Sorry Avril, I've seen you live. It's true.) I mean seriously. Plus she's got her heart in the game and is all about promoting the cause. Not only is she a survivor, but she lost her best friend to melanoma a few years ago, and it runs in her family, so she knows what's up. While we were chatting her up on the nice cool tour bus (where, gratefully, she let us chill for a while), one of the volunteers outside, Katie, a friend of Paige's, brought in a 16 year old that had recently been diagnosed at stage I. She had gone to get checked out after her dad had a lesion removed and sure enough, they found a suspicious mole. Paige took the time to talk with this girl and get to know her, and I was hella impressed. This is what it's all about people, putting the word out there and letting others know they're not alone and to keep up the good fight. Geez, I'm getting misty.

So big ups to everyone I contacted that pitched in for free products to everyone stopping by the free skin cancer screenings (including Neutrogena, Too Faced, Paula's Choice, Imerman Angels, I2y.org, Spot a spot and Paul Mitchell Salons and of course the amazing Skincancer.org and the amazing Melanoma International Foundation), and huge props to Katherine, Paige, FM World Charities, Vans, Mole Mate, Eric Gast, and all the volunteers who pitched in to help make this initiative possible. Party on, Wayne. Party on Garth.

-MM

Neutrogena Rockin It Awareness Style

I got a great email from the good peeps down at Neutrogena today asking me to help pass on the information about this PSA.
I have to tell you that it doesn't surprise me that Neutrogena is the number one derma recommended skincare brand because they're always coming out with new skin protectection technology. I personally use their Fresh Cooling Body Mist Sunblock, not only because it's a big seven-oh, that's right- SPF 70 baby- but also because it really does leave a cool tingly feeling on your skin. That's important for days like today when it's already 95 and Bear is needing that afternoon walk. And, since it's a spray, I can do my own back and shoulders when I need to. I LOVE that. I keep in in my purse so I have it whenever I need to apply.

And Neutrogena's not just a pretty face, either. Their Partnership for Skin Health is out there getting the message out about skin exams, too. Kudos to them. Give their YouTube vid a hit and pass on the message every chance you get.

Hilarious!

Bobby was randomly Google-ing melanoma and found this conversation on a tanning website about- of all things- ME. Hysterically hilarious, we laughed forever. And I haven't even cracked open the box of wine yet.

http://www.tantoday.com/forums/salon-discussion/24149-miss-melanoma-new-spokeswoman-fun-side-cancer.html

The very best part is the comment by the moderator at the very bottom. Feel free to add your own comment!

Scared of Skin Cancer Clip

Thanks to Parisa Vahdatinia for writing and letting me know about this great little clip on Current.com about the dangers of sun exposure. Skin cancer is a cancer that's largely preventable! Enjoy and pass it on!

http://current.com/items/88999331_scared_of_skin_cancer

Oh come, All ye Support Group

6 months. 6 months since I had seen my support group members. That was when Faith moved to McKinney and when our little group sort of stopped making it on Thursdays to Gilda's Club. The post-treatment group that we joined was so different from what we'd had when we were all in the active treatment group, and so slowly, we all dropped off.

Lucky for us, we have a tradition of "Celebrate Us" dinners. Sounds cheesy, I know, and it probably is, but it's good to see these people who listened to me whine every Thursday the entire time I was doing Interferon. It's good to be able to see friends that are different from any kind of friends I've ever had. It's good to know that when no one else understands what I say about cancer, these girls do. And they KNOW. When I say I won't do treatment again, they don't try to talk me out of it. They are friends- the ones who called me when Oscar died. They were there at his house every time I went to see him. They called and came to see me and brought food when I was in the hospital last June for surgery. These girls know. They've been here through it all.

And it's not weird to see them and say, "How was your last scan?" It's not weird to them to have a cold and think you've got a recurrence. And they know SO much more than my gp. Is that bizarre? Yes, that part is bizarre, but true. And it's so good to have them to ask things to. And hearing them talk about how cancer still affects them every friggin' day, even so long after treatment- well, it's just reassuring to know you're not the only one. When I listen to them, and hear their words, and feel their pain, I also see that I've grown a little, too. I really empathize with what they're feeling, when, in the beginning I was so wrapped up with my own drama, I couldn't even get past my own fears to listen to someone else's. At the time I beat myself up for it alot. Now I look back and am see just how messed up I was from everything that was happening to me. Now I am actually being a really friend to them. And it's good that now I can make it through a conversation without crying.

See the thing is, these girls (and 1 guy) and I, we have so little in common. Sure, there are things within all of them that I can relate to, but in general these would not be a typical group of my friends. And I guess that is the beauty of this group, is that even though we are so different, these people are so important to me. And more than that, their presence means that I can take peace from the fact none of us are alone in this. I've been dealing with a lot of melanoma stuff lately that I'm still not quite ready to talk about, but I will tell you that my Gilda's family has made me able to face it. Facing it is not quite talking about it or writing about it yet, but it is a step in towards having some faith in myself and my capabilities in handling the tough stuff in life. I dont' know if any of you have felt that lately, but it is truly a gift to have people bring that feeling to you, or out of you, or whatever. I hope that I can do the same for them someday, because that was a just about the most wonderful gift I could've gotten this Christmas.

Sending that same gift to all of you,
-MM

Yay me - 33!

Today, my friends, is my 33rd birthday. Every year on my birthday, I can count on 2 things happening. The first one is my Mom calling. Up until Dad died, in fact, I could always count on both of them calling and telling me their 2 different versions of the story of the day of my birth.

My dad's version went something like this: they were outside weighing baby pigs, getting them ready for the sale, (if you're just getting hit with how back-woods, hillbilly, redneck country I grew up at this moment, I apologize and I'll give you a second), when Mom started getting a stomach ache. They realized she was in labor and drove the 90 mile trip to the hospital (again, see back-woods hillbillies) in about 50 minutes. A couple hours later, a nurse enters the waiting room and says, "Congratulations, Mr. Lee! You have a little boy!" And just as he gets all excited, another nurse enters the waiting room and says, "Congratulations, Mr. Lee! You have a little girl!" Turns out there were a couple of Mr. Lee's there.

Then my brother threw the temper tantrum of all temper tantrums because it was the first day of deer season and he wasn't going to get go hunting. So he and my dad leave, and my brother begins his life long obsession with knocking off mammals of lesser intellectual degrees (although I guess that's debatable).

Dad always finished the story with a bit about how the next day he took the cute little pink pigs to the sale, but couldn't sell them because they had lice, and he cried all the way home.

Mom's bit included some details like a knot on the tire all the way to Waco and something about my grandmother in the back seat of the car smoking two cigarrettes at once. I mean, that HAD to be a good time.

The other thing I can count on is that I will find myself at some point today looking back on all my past birthdays and birthday parties and finding myself incredibly lucky to have experienced so much.

And again, I have to say I'm pretty damn happy just to be here today. I never used to tell people it was my birthday because I hated the attention. But now, since surviving melanoma, it's become a really big deal to me to enjoy my the event every year. This is my 4th birthday since my first diagnosis, and I'm happy and feel grateful to have made it another year. I'm thankful for all those days in between these birthday parties, and I NEVER ever complain about getting older anymore!

So I'm off to enjoy my big day, and I'm wishing everyone out there all the joy and blessings that I'm feeling right now.

-MM

P.s. Here are useless and maybe not so interesting things I found out about my birthday:
My date of conception was on or about 22 February 1974 which was a Friday.
I was born on a Friday under the astrological sign Scorpio. According to Birthday Calculator numerology, people born on this day are supposed to be mediators/peacemakers. Hmm... not exactly accurate.

But, as of right now, I am:
33 years old.
396 months old.
1,722 weeks old.
12,053 days old.
289,278 hours old.
17,356,691 minutes old.
and 1,041,401,474 seconds old.

I share birthdays with Sam Waterston (who?), Judge Wapner (awesome!), and Georgia O'Keeffe (love those flowers! or vaginas, whichever you prefer to believe).

In 1974 there were approximately 3.7 million births in the U.S. The top songs of 1974 were Top songs of 1974 were The Way We Were by Barbra Streisand, Seasons In the Sun by Terry Jacks, The Streak by Ray Stevens, Kung Fu Fighting by Carl Douglas, Annie's Song by John Denver and The Loco-Motion by Grand Funk.

The 33 candles on my birthday cake produce 34 BTUs,or 8,568 calories of heat (that's only 8.5680 food Calories!). You can boil 3.89 US ounces of water with that many candles.

And, here's the doozy-

There are only 40 days till Christmas 2007! (start panicing now)

My Story

In May 2005, months before I had turned 31 years old, I was working as a medical assistant in a not-for- profit clinic. I had moved to Dallas from San Diego the previous December to be with my dad who had terminal renal cell carcinoma. He past away in January and I decided to stay in Texas, near my family, for a while. I took the job at the clinic because I really loved the doctors that worked there- they really viewed their position as doctors as a means to serve society- and needed work, but mostly because I felt they were doing good things and I needed to be out of the house, keeping myself busy, not wallowing in grief.
The job did not offer insurance, but I did not plan on staying there long-term, so I wasn't worried about it. The doctors really took care of their nurses, though, and one day, while showing a nurse friend my pedicure, I asked a doc to take a look at a mole on my toe. The mole had been there my whole life, and had within the last year started to bleed. It sat square near the top of my smallest toe, but I was a runner, and ran about 25 miles a week, so I always assumed it was just irritated from that. Dr. Daya told me to go across the street to a dermatologist friend of his to have it removed. The derma took a look at it and said it was probably nothing to worry about, but needed to come off. It was perfectly symmetrical, had clear borders and normal color. I asked how much the lab fees would be because I was paying cash and not making great money. I also asked if it could be sent diagnostic lab I was familiar with, simply because I knew their prices. He said we would work it out but insisted on using a laboratory which specialized in derma cases. They gave me the number to an automated system and said the lab results would be ready in a week. I didn't think much of it.
A week later the doctor I was working for, Dr. Daya, called me into an exam room. I was a little freaked because the only reason I could conceive of him wanting to talk to me one-on-one was because I had done something wrong and was going to be in trouble. He was looking at the floor and very solemn, and told me he was sorry to be the one to tell me, but that I had cancer. "Nodular malignant melanoma," he said, "a very aggressive form of skin cancer." He said I needed to get immediate care or that I was in danger of dieing.

A month after the diagnosis, I finally found someone to who would see me even if I didn't have insurance. It took weeks of begging and searching and networking, but we finally found Dr. Beitch and Dr. Venkatessan. So, here's the short version:
May 2005- Diagnosed at Stage II.
June 2005- I went to an outpatient hospital and had the skin and some of the flesh around my toe removed, a skin graft taken from my thigh, and 3 lymph nodes from my groin to determine if the cancer had spread. Two weeks later the results came in that the borders around the skin left on my foot were positive for melanoma as well as 1 of the 3 lymph nodes. Now considered Stage IIIc.
July 2005- I had my smallest toe, part of my foot, and all 16 lymph nodes from my groin removed in outpatient surgery.
Outpatient surgery is no fun, especially if there is abdominal surgery involved. The incision started about half way down my thigh, crossed over just above my hip, and stopped about 3 inches above the hip bone. They also removed my little pinky toe and a small part of my foot at the same time. It was, how do you say?, intensely painful, especially since I didn't have insurance at the time and had to do a "day surgery," which basically meant that after I came to, I had to get the hee-haw outta there. That meant getting out of the bed and into a wheelchair, out of the wheelchair and into a car, out of the car and walking into the house. Ouch. Yes, there were pain meds, but nothing really prepares you for walking (or should I say attempting to walk? more like dragging myself on crutches) just hours after they staple (87 staples, by the way) you shut. A full 10 on the one-to-ten pain scale. I didn't even know that pain like that could exist. Forget childbirth, if that's what it's like.
August 2005- I began high dose Interferon in a hospital. Interferon is a biological therapy/ immunotherapy for high risk patients. The treatment is a little dangerous and has pretty serious side effects so it required 5 day hospital stays for 4 weeks.
September 2005- The treatment lowers your ability to fight infection, and in early Sept I discovered that my leg was red and tender, and I had 102 fever. I had contracted a staph infection and had to stay another 3 weeks in the hospital fighting that.
October 2005- I was sent home and Rxed low dose Interferon to be self administed by injection for the next 11 months. I would be very sick and unable to work. Off and on through the year I was sick, jaudiced, and had heart palpitations and trouble remaining ambulatory. Spent some of the time in a wheel chair.
October 2006- Finished the treatments, but the treatment had caused a condition similiar to chronic fatigue syndrome. Spent a full year and a half combating those symptoms.
June 2007- Routine PET scan showed an inflamed inguinal node which doctors were concerned was melanoma. Node was removed but no evidence of disease found.
Present- The majority of the symptoms from Interferon have subsided. Currently NED (no evidence of disease.)

There is no remission for melanoma, because there is no cure, and, essentially, it's going to come back. There isn't even really a treatment for it. Even Interferon, which I took for a year, is rarely Rxed anymore because the results are so iffy (only a 6%-20% chance of staving off disease) and the side effects are so horrendous. Interleukin 2 (or IL-2) is also a treatment option, but has about the same results and even worse on the side effect side. I prefer quality of life to doing a treatment like that again. According to the American Cancer Society and most of the doctors I've seen over the last 3 years (and there have been a lot!) my chance of living to 2010 ranges from around 27% to around 52% and my chance of living to 2015 ranges from around 22% to around 37%. But, to quote Fight Club, "On a long enough timeline, the survival rate for everyone drops to zero." In a way, I'm lucky because at least I'm not going to work some shit job that I hate in the hopes of one day, after retirement or something, enjoying life. I enjoy it now. I live as fully as I can. And it's a good life.
There are some very hopeful treatments for melanoma in clinical trials now, such as vaccines. But until some kind of effective treatment comes out, I am not getting regular scans. My oncologist kinda said, "What's the point? There's no treatment anyway." and I agree. If I get scans every 6 months, I'll be a nervous wreck until the next one. So, I'm taking it as it is.
I'm hopeful about the future. But more importantly, I love the present. It's all we have, anyway.

2 years, 1 month and 141 posts

That's right, it's our "looking back" episode, kids. Cue the music montage.

The very first post on this blog was June 14, 2005, when I'd only known my diagnosis for about 3 weeks. In honor of everything besides melanoma, I've decided to post a top 10 list of some of the most important things the last 2 years have taught me.

So here they are, in no particular order.

1. Normal is something we've all aspired to at some point in our lives (remember those teenage years?). But melanoma has taught me, at least, that normal is just a setting on the dryer. It's a silly term, a crazy concept, and, let's face it, a thing of the past. I spent the whole first year trying to appear normal after the diagnosis, trying not to make anyone feel uncomfortable. Then I spent the last year recovering from Interferon, just trying to get "back to normal." Slowly, I've come to realize that there is no normal anymore. Or, rather, there's a "new normal." Subtle differences and changes that I had to make have made a world of difference since my diagnosis, but, over time, I've learned not to fight it. The way I work, the way I play, the way I eat, the way I think, who I choose to be and who I choose to be around- everything has been touched and changed, and yet, there is no anger in the lack of normal. It's just a new life, sometimes more difficult, but always much more human and mortal and real.

2. Activism is real and powerful. I've been involved in it most of my life, but only after I became Ms. Melanoma did I realize what a difference it can make. I'm touched by so many people I've come in contact with that work hard to bring melanoma awareness to light, and they give unselfishly and lovingly to that greater cause. My advice to you: pass out some fliers, walk a 5k, answer some questions, change a life. You'll inadvertently change your own, too.

3. Friends can make a world of difference. This can go either direction- as in, people you barely know, people you've never met, and people who don't even know your real name can "show up" when it's necessary and make the tough times bearable. On the flip side, friends you thought were family may not be able to hang in there. This is the ebb and flow. Which leads me to #4.

4. Take the good with the bad. Nothing is all positive or all negative, believe it or not, and what we take from experiences defines who we are.

5. Asking for help is not being weak. Or maybe it is. But it doesn't matter. Either way, there will be a time you need to do it. Yes, it's humbling, and yes, it's sometimes demoralizing; I mean, no one wants to ask for help wiping their own hiney. But, in another way, it's a gift. It allows you to see what happens when you are vulnerable, and who will help you to rise above it. I've been lucky, or blessed, or both, but the people that have surrounded me through the toughest times make asking for help a safe and comforting experience. Which brings me to #6.

6. I have the greatest boyfriend on Earth.

7. On a grander scale, cancer has given me the ability to accept that my death is imminent. I've written about this a lot in this blog, because it is such a huge perception change. This last path report gives everyone, first and foremost me, but also my oncologist and doctors, lots of hope that this won't be happening anytime soon. Nonetheless, having this disease has been an eye opener as to the way we deal with our own mortality in this culture, (which, essentially, is by not dealing with it). Why don't we face the truth? We are frail and temporary beings. And it (as in cancer, accidents, disease) COULD happen to us. I'm not planning on checking out, but just knowing how close it can be, I think I live my life more fully.

8. I am more than my diagnosis. Even so, living with disease is harder than you think.

9. We all have an innate strength within us. I can't tell you how many times I've been told by people "You're so brave" or "you have such a great attitude." The truth is neither of those, though. People I know with cancer, friends who have lived with it or are living with it now, they outdo me in courage and attitude tenfold any day of the week. But the fact is, if it came down to it, we'd all be able to get through it, even if it wasn't with the grace and dignity that my friends exhibit. The Duke said it best when he said, "Courage is being scared to death but saddling up anyway."

10. Control, 99% of the time, is just an illusion. The only thing any of us can control is the way we react to a situation. That, perhaps, has been the most significant of all the lessons I've learned.

Thanks to all of you who have traveled this journey with me, and for all you've said and done. Oddly enough, it's been a good 2 years in many ways.

-LL

P.s. Please keep Shannon in your prayers