Jilly's Jems

There are times when I don't feel like I should share other people's stories, this is one of those times. Susan tells their story in a way that touches your heart and causes the tears--even the happy tears--to fall. However, I have so many faithful readers and so many good souls who follow this blog that I have to introduce you to a special family and ask you to keep hem your thoughts, well wishes, and prayers.

I also beg you to share their story.

Jilly's Jems Facebook Page

For the life of me I cannot remember how I "met" Susan. I believe Susan had posted on a forum about her young daughter and how she refused to let melanoma rule her life and I commented because the post spoke to me. I was only 23 at the time, angry and scared of the unknown. Seeing Susan mention how Jillian wanted to continue on with school and her apartment living made me think I could do it too. Regardless of how we met, in the two years I've "known" Susan, she has continued to amaze me with her inner strength, the love she has for her children, and her true determination at getting the word out about the seriousness of melanoma. This is a mother who during her father's last few days on Earth asked him, "Dad, when you get to Heaven, will you wait for Jillian and be there for her when she gets to Heaven too? Will you give her a big hug from her mama? I want to be able to tell her that you and I spoke about it, and that you will be waiting for her". She is real and honest. (To read more about The Promise: http://jilliansjourneywithmelanoma.blogspot.com/2012/09/the-promise.html)

Susan is one determined Mama Bear!

This billboard, and others, have been in numerous places like Michigan & North Carolina!

Anyway, I'm sure Susan is itching for me to stop talking about her, so let me give you a brief introduction to the beautiful Jillian. She's 23 years old, newly married, and has been gracefully battling stage IV melanoma since 2010. Last night she was told that the chemo is not working. Jillian is 23 years old, the brain mets are inoperable and the chemo is not working. She has heard the words, "It will take a miracle for you to survive." Yet, she fought on. She has lived life with a laugh, a hug for her mama, and an independent streak that causes me smile every time Susan mentions it.

I don't know what's next for this beautiful family, but as Melanoma Prayer Center posted today on their Facebook page: "Please, when the time comes, never say "Jillian lost her battle." Jillian will not lose at all. Her motto is "fall seven times, stand eight." When melanoma knocks her down that final time here on earth, she will not only STAND at Heaven's Gates, she'll run through them a WINNER! She's got her granddaddy waiting for her and Jesus will welcome her. Sounds like a winner to me!"

To Jillian and her family, we send our love and prayers.

Susan's blog: Jillian's Journey with Melanoma: A Mother's Story

Jilly's Jems on Etsy: http://www.etsy.com/shop/JillysJems?ref=si_shop

Let's Get Your Glow On!

I hope you all had a lovely holiday weekend with your family! We had a nice quiet weekend with the family.  I didn't blog about this because things were so up in the air, but Mr. Spots (for you new readers, this is my boyfriend. How did he get his name? Read here.) was unable to go to the AIM at Melanoma walk in Charlotte the weekend before last because his dad was involved in a hunting accident. Since then, he's been in and out of the hospital. Thanksgiving landed him back in the hospital. He came home Saturday afternoon and is resting comfortably. We spent the weekend helping around their house and enjoying their company. Now you know why I was MIA! :-)

So, let me share a picture with you and ask for your opinion:

 

"Let's get your glow on!"

OK, when I first saw this, I thought it was a tanning advertisement. I kept reading, hoping I was wrong, and realized it's actually a plastic surgery group sponsoring this event that includes a "Reveal Camera" that allows folks to see pictures of the sun damage on their faces. 

Am I the only person who thinks maybe they shouldn't have used a girl facing the sun, getting her glow on, for an event that's going to point out sun damage to women? Shouldn't they promote protecting her skin in the first place? It just seems odd to me that the girl is facing the sun, absorbing the sun that causes the damage they are then going to reveal with their fancy "reveal camera."

Or maybe I had entirely too much time on my hands today and over thought this completely?

Whatever. ;-)

Happy Monday! XO

The Second Thanksgiving

Pinterest

Like many of you, I have a new perspective on Thanksgiving. Thanksgiving isn't held on one day in the crisp month of November. No sir. Thanksgiving is every day of every year. How do you sum up what you're thankful for in just a few words? Although I tried to do so last year, I can't. It's as simple and as complicated as this: I'm thankful to live a happy and healthy life surrounded by incredible people.

This year I feel like I need to take the time to thank each and every one of you for your continued love and support. I started this blog in February 2011 at the suggestion of my mom. Nervously, I posted it to my Facebook, and boy, it took off. You read, you commented, and you shared. Now just a year and 8 months later, this little diary of mine has been viewed 285,035 times. I wanted to share my story my hopes of changing minds about tanning and the need for sun protection. Because of YOU, I am accomplishing my goal. Thank you.

 

This was a gift from my new friend Donna! (Appropriate for today's posting, yes?) Donna had this in her RV on Saturday and my sister and I both commented on it. What arrived at my doorstep yesterday? This. One for me and one for my sister. Did I mention how truly blessed we are to have made such a great new friend?  I am so excited about seeing her again next week!

Alright, friends, get off the computer and go spend time with your loved ones.

Happy Thanksgiving!

 

Old Friends

“There's not a word yet, 

for old friends who've just met.” 

~Jim Henson

Friday night, meeting for the first time.

I knew when I planned my trip to Charlotte for the AIM at Melanoma 5K that it would be a special weekend. I did not prepare myself for how special it actually would be, how honored and humbled I would feel, and how these cyber friends would instantly feel like family. 

We arrived in Charlotte around 10:30 Friday night. There I was, checking in with the receptionist when I heard, "There's Chelsea!" I turned to greet Reverend Carol of Attitude of Gratitude and Melanoma Grief Chapel for the very first time. I got a hug from the Rev herself and then she informed me she had a little present for me. Clueless, I opened the bag...

Rev. Carol made me a melanoma princess for the weekend! I can't remember how it was determined that I should have a tiara, but a few months ago, my mole mates joked that I would have one at the walk. I had totally forgotten about it, but not Rev. Carol. She remembered & crowned me PRINCESS! (Here's her description of our meeting!)  I've always wanted to be a princess...(Although I think Mr. Spots--and maybe my sisters-- would say I already act like one sometimes. Oops!) 

Rev. Carol informed me that there were other melanoma warriors still hanging in the hotel lounge so I hugged my mom and step dad, convinced my sister it was too early for bed, and brought my luggage into the bar with us. It was time to hug my friends.

  The 3 of us met on Twitter!

@TaraWilhelmson 

@LightSkinnedMother 

@Melanoma_Diva 

After many hugs, a few hours of convo, and too much wine, we headed up to our rooms and happily said, "See you tomorrow!" (Which is really, really fun, by the way!) 

Saturday morning arrived and it was a beautiful day to AIM for a CURE! I think the best way to document this day is to share the pictures with you. Of course I will add a few comments here and there.

Newly diagnosed melanoma warrior, 

showing that she doesn't chase the sun anymore!

It turns out that the owner of this RV became a very dear friend to me this weekend.

 This beautiful gal is Timna of Respect the Rays.

Sometimes you meet people and they instantly feel like family. Meeting Timna & her real life family was like that for me. (I mean, her daughter picked me out of a crowd of strangers and said, "Are you Chelsea?" Love ya, Ella!) I highly doubt I'm the only one this weekend who felt like that about Mrs. Timna. 

 "Fast forward to the walk...20 signs were held by so many loving people!  Eric, Bob, Judy, Steven, Jen, Jillian, Leslie were all "at the walk"!  THIS is what WE do!  We make shit happen!  WE!  As the brilliant Helen Keller said, "Alone we can do so little; together we can do so much."

--Timna, Respect the Rays

Let me explain...Timna went above & beyond this . Rev. Carol shared an idea, Timna put it into action, and people all around the country were impacted. You see those signs? She made them to honor warriors who are off battling this horrible beast. These folks wanted to be at the walk with us; however, melanoma had another plan. With her help, they attended. People noticed!

I can't wait to see her again!

My twitter girls!

I'm already secretly planning road trips

to TN & FL! 

 Cute Alicia of The Skin I'm In!

Isn't she adorable?!

She's just as sweet too!

Alicia's support system! Love the shirts!

I had wanted to meet the author of Hotel Melanoma ever since he made me lose my sh*t in the middle of an oncology waiting room while reading his blog. Warning, if you worry about being socially acceptable, do not read his blog in public. I'm pretty sure there were sad tears and happy tears during my 3 hour wait for an appointment. I guess I owe Rich a big THANK YOU for sharing his blog, otherwise I would have had to read some crap like Cosmo. ;-)  (It was this post that made me laugh out loud and wipe a few tears.)

Survivors carrying the signs of our inspirations.

Author of Hotel Melanoma & Stage IV (NED) warrior Mark Williams.

You can read a little about Mark HERE!

Both men are true gentlemen and I am so honored to call them PALS!

Oh, and yes, they are wearing tutus! 

You helped them reach their goals, they kept their word!

Did YOU get your FREE skin cancer screening?

They call us The Power Rangers.

Hotel Melanoma

Attitude of Gratitude

Mark Williams

Me,

Black Is the New Pink

 My family made the trip for a second year in a row!

I am so thankful for them.

  

Helping Charlotte's AIM Chapter President, Anne, with the raffle!

Oh, and it just so happens, she is a great friend of mine.

For those who met her for the first time this weekend,

isn't she amazing?!   

Melanoma Tailgate Party!

 

I was convinced by my new mole mate to join her and Al, author of Black is the New Pink, and his family for a glass of wine. One glass turned into more than one glass, and we had such a great visit! This was definitely a highlight of my weekend. These two people were exactly as I imagined them being. She is incredibly sweet, welcoming, and just fun! Al, as I knew he would be, is a joker! He claims to be shy but I don't believe it for one second. Al's wife and family were such fun to be around, too. After a few minutes, it really felt to me like we were old friends getting together to play catch-up! I have a feeling all of us will get together again one day for more wine out of a paint can! :-) 

Meeting all of my "mole mates" was such a special experience.

This lady pictured above, her mom, and her beautiful daughter

were truly a pleasure to meet!

I know that I said last years AIM at Melanoma walk was special, and it was because it was the first fundraiser I had ever attended for a disease that has hit so close to home, but this was incredible. I met so many friends who I've shared secrets with, fears with, and I got to hug them in person! I met strangers who came up to me and openly said, "You have no idea who I am." I listened to a beautiful young girl honor her sister's memory, and promise that one day a cashier at the grocery store will say, "Would you like to donate a dollar for melanoma awareness?" I got to stand next to a stage IV melanoma warrior who told me all about the YMCA LIVESTRONG program that got him back in the gym. I walked with a mother who recently buried her own daughter due to this damn disease, yet she's putting her grief aside in order to save other young women. The point I'm trying to make is that I was surrounded by so many incredibly strong people who understand that melanoma is so much more than just skin cancer.  

Picture from Respect the Rays!

We were a group...
        a group made up of old friends who had just met.


 

Mole mates, 2012, Charlotte, NC

 

 

Walking For A Cure

2011 AIM at Melanoma Walk in Charlotte, NC

It's time, friends.

Tomorrow I will head to Charlotte, NC to join my mom & step dad

and many of my melanoma friends

to participate in this great event. 

To those of you who donated, THANK YOU. 

Your money supports a great cause.

It has been a year and 9 months of shared fears,

constant encouragement, 

and friendly cyber friendship.

Tomorrow and Saturday I will meet many of these friends

for the very first time.

I. Can't. Wait.

Before I go to bed, I want to thank each and every one of you

who reached out to me over the last few days. 

Your support, advice, and love means so much to me.

It's an understatement to say

that I have the best support system ever.

Thank you.

All my love,

Chelsea

 

Unfriend

"Calling somebody else fat won't make you any skinnier. 

Calling someone stupid doesn't make you any smarter."

-Mean Girls

I have a love/hate relationship with my high school memories. Sure, I loved when I had lunch period with my two best friends and we got to catch up on gossip. I loved getting dressed up for prom and having my best guy friend pick me up on my doorstep. However,  I could have done without the cheerleader putting gum in my hair all because her ex-boyfriend asked me to prom... And I'm pretty positive I wouldn't have minded my picture remaining on the wall since I worked hard for that award. High school was brutal which is saying a lot because I wasn't unpopular. Kids are mean. Even I had my moments I am most definitely not proud of.

"There are a million things you have to do to get through each day. High school has things that can trip you up, ruin you, people say one thing and mean another, and you have to know all the rules, you have to know what you can and can't do.” 

- Elizabeth Scott, The Unwritten Rule

I'm here to warn ya, the cancer network isn't all that different than high school. There are high emotions, overly sensitive souls, rules you must silently follow, and sometimes there are games you have to play. I'm not saying it's a bad thing, it's just a part of it. The majority of the people I have encountered have been wonderful, truly inspiring people. These honest people who make up the majority of the group are the ones who need you as much as you need them, who sincerely cheer you on from their computer monitors, who talk and listen. 

When discussing the amazing people we meet in the cancer network, Hillary Fogelson explains it best in Pale Girl Speaks, "It may seem morbid that I like going and hearing patients' stories. But as horribly shocking and painfully sad as most of the stories are, I still enjoy hearing people talk about their illness: their cancer, their side effects, their recovery, and sometimes even their death. I'm meeting people in the most vulnerable time of their lives. Many of them are confronting their own mortality--a few are still trying to accept their illness, some are struggling to make peace with it, others are looking to make peace with themselves, but all of them are willing to share. Share all of it with me. And it's truly amazing. It's inspiring. These people! I can't believe these goddamned sick people! I am constantly amazed by their strength. They are so strong, so powerful. They've dealt with more pain and hurt and fear than they probably ever imagined they would" (285-286).

Then there's the other side. You meet the people you are unsure of, the people who make you feel like the treatment you are doing isn't just right, the folks who don't bring you down with their cancer, but instead, with their attitude.

http://pinterest.com/pin/143411569354378002/ 

And that, my friends, is the topic of tonight's post: Attitudes.

I feel like I have been very open with the world about my experience with melanoma. In return, I have been adored and criticized. When I am happy and enjoying my life outside of melanoma, I share it. When I am feeling bitchy and just freaking ticked off at the things that are happening, I blog about it. When a stranger questions my scars I confide in all of you about the tears that were shed secretly in my car. When a fellow melanoma warrior tells me I don't have brain cells because I used the tanning bed, I take to this very public blog and write about it with hopes that you all have advice on how to handle the situation. I tell you things about my personal relationship during its darkest hour simply because I don't want to sugarcoat things. Shit is hard sometimes and I made a promise in the very beginning to be as honest as I possibly could be. Sometimes you like what I have to say, sometimes you don't. It's something I knew would happen when this blog started becoming a bit more popular.

Blogging about my life and my cancer isn't the only thing I try to do. I make a huge effort to support fellow cancer patients. I may not respond to every status update, it may take me a few days to get back to your email, but when you all take the time to email me with your deepest fears and concerns, I try my hardest to address every single one of you. I try to be available, honest, and respectful of you as I wish for you to be of me.

With that being said, I will not support negativity. Ever.

In the last 2 months I have witnessed an increase of bullying within our loving melanoma community. A group where I used to frequent often to check on my "Mole Mates" and to ask my own questions is now a place I am no longer a part of. I have deleted fellow melanoma warriors from my personal Facebook page due to negativity and unfriendliness.  I hate that I feel like I need to remind people of this, but cancer doesn't give you an excuse to act like an asshole.

Because of the decisions I made to unfriend certain folks, and because of my opinion of Bruce Jenner, I have been accused of being "two-faced" and not supportive of fellow melanoma warriors. This opinion has lead people to send letters to a certain Foundation I hold dear to my heart. Apparently they do not believe I am a good role model because of my two-faces and the lack of support I give to fellow warriors.

I made a personal decision to remove myself from negativity. It was a decision I made on my own. While I hate that these people have to battle melanoma, I will not excuse them from their poor behavior nor will I tolerate it. Because of this decision, 3 women have decided to verbally attack me via letters to THE Foundation that means a lot to me.

I am not OK with this.

These women want me to be more real than I have been? Here it is:

Cyber bullying is not OK and I refuse to tolerate it. If that means I'm an unsupportive 2-faced diva, so be it. My decision remains the same. I'm keeping the negativity out.

A Punch In the Stomach

While browsing through some of my old boxes of books last night I found an item that I used to carry around in my purse. I knew that if I wanted a spontaneous session, my eyes would be safe. I would have lotion in my car, these babies in my purse, and I was good to go.

Tanning goggles.

 I felt like I had been punched in the stomach. No lie. I thought I was going to puke while standing there in my sister's basement holding the dusty eye protection. The worst part was remembering how sometimes I would go without the eye protection for a few minutes to avoid tan lines. Man, I made some stupid decisions and I don't have a person to blame but myself.


After walking upstairs I sat down and started browsing through one of the books I found. Flipping through the pages, I read this passage: 

        

"Something really bad happened to me, something that changed my life in ways that,

if I had a choice, it would never have been changed at all. 

And what I learned from it is what, today, sometimes seems to be the hardest lesson of all.

I learned to love the journey, not the destination. I learned that this is not a dress rehearsal,

and that today is the only guarantee you get.

I learned to look at all the good in the world and to try to give some of it back, because

I believed in it completely and utterly. And I tried to do that, in part, by telling others what I had learned, even though so many people may have thought I sounded like a Pollyanna."

-Anna Quindlen, A Short Guide to a Happy Life

I needed to read that passage at that very moment. It may have taken a horrible thing happening to me before I started living life the way I am meant to live, and that includes sharing my story with people around the world, but I really am happy. No amount of regrets will change my situation which is exactly why I can't allow myself to get caught up in them.

Oh, and you would think I would toss those goggles in the trash, right?

Nope. They'll go with me to the next speaking event, hopefully located in a high school!

Happy Veterans Day!

I want to take time to thank our many Veterans, 

past and present, 

who have made the most selfless decision to serve our country. 

I am in awe of you.

Thank you.

*Tomorrow I plan on blogging about what item I found while looking through my old books tonight. I felt like something had reached out and punched me in the gut...

Sweet dreams, friends. 

Overdue Check-Up

Are you guys as burnt out on political talk as I am? Well, don't worry, I'm not touching on politics tonight. I have new results to share with you tonight...

Due to the craziness of the last few months: new job, trips to New York, and finding the house, I let my 3 month appointments with my dermatologist slip by. Don't worry--I saw other doctors who gave me the glance over, but I knew it was time to get a full body exam when my beloved oncologist, The Wizard, questioned me about it in October. I headed into the office for my 7:10 appointment on Friday with a smile on my face and a magazine in my hand. I wanted to give him a copy of The Skin Cancer Foundation's Journal that I was so honored to be a part of. While waiting for Dr. Cool Guy (I call him that because he's totally unlike other doctors. He's laid back and just someone you want to be friends with) to enter the room, I heard him talking to the nurse: "This is her." Nurse: "Who? The one you always talk about?" And what do you know, my dermatologist walked into my exam room holding his own copy of The Skin Cancer Foundation's Journal! 

(You can read or buy a copy of the Journal here.)

After we played catch-up, we got down to business. I had one mole in particular that made me nervous. Not only did it resemble the mole that eventually turned into melanoma, it also caught the attention of my other doctors. While the dermatologist comforted me that he didn't think it was anything too serious, he said he trusts my instincts. Guess what? It was a dysplastic nevus.  I knew it needed to get off my body!

 

Luckily he got clear margins!

Don't think I escaped with just one battle wound though! Dr. Cool Guy was looking at my back and hesitated for a while, so I knew he saw something he didn't really like. He asked, "Do you mind if I take this?" Of course I said, "Take it." The watch and wait approach doesn't work for us...

I'm totally allergic to the tape they use...Must remember that next time!

That mole also was mildly dysplastic.

My dermatologist is married to a two time melanoma survivor which is another reason why I appreciate him. Ever since he told me that horrible news, he has done everything in his power to help me. We don't shake hands when he walks in. We hug. I respect him, he respects me. No lie, there was a time when I was mad at him. I was mad because I felt like I wasn't prepared for the horrible news he gave me. But how could I have been? We--like so many other melanoma patients--didn't think that mole was melanoma. And let's be real. I wasn't mad at him. I was mad at the shitty situation.

Back to his wife, when I mentioned on Facebook that he had removed two more suspicious looking areas from my back, she wrote,"I'm glad he doesn't trust a mole when it comes to you." She's right, he doesn't trust moles. He will quickly point out what he doesn't like and slice it off. Sure, it may hurt a little, it may cost a lot, but the peace of mind I receive after I get the phone call from his nurse is priceless. 

Let this be your reminder to follow-up with your dermatologist. If you don't like the way something looks, ask for it to be removed! Sometimes you gotta bite the bullet and be your own advocate.

PS--I have now had 4 dysplastic nevi removed since I was diagnosed with melanoma. Have you all had them removed too? Just curious!