Too-Much-For-One-Blog-Post-Title

Remember how I became really lazy in updating this blog? It is happening again.

Kick me. Throw something at me. Or just turn to Twitter/Facebook/Instagram and you can see that I haven't forgotten about melanoma awareness. In fact, I've been SUPER busy with it!

Prepping for an interview with the New York Post.

I love the months leading up to May. In just 3 years I have seen melanoma awareness grow. While we still aren't where I would like to see us, we are getting there. Alright, let me do a little updating.

Remember last year the American Academy of Dermatology launched the Spot Skin Cancer campaign in May? Remember how they asked the melanoma community, on Melanoma Monday, to wear orange? Remember the outrage from it? So does the American Academy of Dermatology. Many of us within the melanoma blogging community received an email a few weeks ago inviting us to a conference call to discuss AAD's plan for this melanoma awareness month. Instead of rehashing the conference call, especially because Al wrote about it so well, I suggest you read his post! We were all so thrilled that the American Academy of Dermatology read our emails, heard our frustrations, and reached out to us to apologize. I fully intend to support their efforts in raising awareness for this cruel cancer!

I also spoke with a drug company who plans to host a blogger conference in May! I wish I could share more info with you, but be on the look out for it in the coming months. I was so impressed with how interested the company is to promote melanoma awareness so I'm thrilled to see what happens!

This past Saturday was all about indulging in our city's St. Patrick's Day events. I lathered on the sunscreen and headed downtown with my husband to meet up with some of our friends. We had such a fun time!

 

 While enjoying the green beer, I received a message from my melanoma friend in Texas. She said that a reporter for the New York Post was working on an article regarding a donation made to Memorial Sloan Kettering Cancer Center. The reporter wanted to speak to patients who had been treated with Yervoy by MSK. Jennifer passed along my contact info and I was able to talk to the reporter Sunday morning.

So what did a reporter for the NY Post want to talk to this Virginia girl about? It's kind of ridiculous. Apparently folks in NY are royally pissed off at billionaire David Koch and expect New York-Presbyterian Hospital to turn down the $100 million donation he recently made. $100 million dollars, y'all. The reason they don't believe the hospital should accept it? His conservative political beliefs. (Insert eye roll here. It always comes down to politics, doesn't it?)

According to the NY post, Mr. Koch has given MSKCC  $61 million since 1992. This money was extremely instrumental in the development of Yervoy. Should Sloan-Kettering return that generous sum of money because Mr. Koch doesn't agree with Obamacare? Really? (Insert annoyed face here.)

You can read the article for yourself here; however, there are a few things I want to add:

1) The article's title this morning was "Cancer patients bash Koch hospital donation protesters." First, I can speak for Erin and myself, we didn't bash anyone, not even the protestors. When questioned about my feelings, I said that maybe I am selfish, but I'm grateful for the money that Mr. Koch donated because without money, there is no research. Without research, there will be no cure. I don't care where the money is coming from as long as it is used for the right reasons. I'm grateful for his donation.

2) The new title is "Koch hospital saved my life: Cancer patient." I think I'm just going to wait for Erin to blog about this because I'm sure she's going to have something to say. (Insert another annoyed looking face here.)

3) I remember the day Yervoy was approved by the FDA. I was sitting in my hospital bed at MSKCC, recovering from 2 full lymph node dissections, when my surgeon walked into the room. Dr. Ariyan sat down on the end of the bed and told me the news. She had tears in her eyes because she knew what this approval could mean for many of her patients: a new chance.

4) What would I say if confronted by Mr. Koch? Two words: Thank you.

5) So that's what it's like to be interviewed by the New York Post. (For the record, the reporter was SO nice and I enjoyed our 30 minute chat. I'm glad I introduced him to Erin because she was totally the right fit for this story. She's a badass melanoma warrior!)

**On a happier subject, I had the opportunity to chat with Robin over the last few weeks regarding articles for the website cancercommons.org  Talking with Robin, even about melanoma, was fun! She was so great to chat with and it was a pleasure telling her my story. Robin's article was published today and I am honored to be featured as a Super Patient! The article briefly touches on my melanoma diagnosis, why I said NO to interferon, and how I ended up in a clinical trial at MSKCC. Feel free to check out the article here. I encourage you to browse their entire site. There is a ton of important information.

Hopefully only one more time in this chair!

Oh, and by the way, my scans were A-OK! I was totally unremarkable! (The one time I strive to be unremarkable! Ha!) The lymph node remained the same size as it was in January. Scans 3 months in a row? I'm pretty much glowing. I'm so relieved to have a break until May!

I also had my second to last infusion! Can you believe it will be 3 years in May? My liver is apparently feeling it though. I received a call today from the oncology nurse that my liver enzymes--AST--are elevated. This happened after my last infusion as well. Maybe I really  am getting the drug. (Oh, and I promise, I had the bloodwork done last week, before the green beer! Hahaha!) I will go back this coming Thursday to have my labs repeated. Hopefully my liver will heal itself just like last time!

Alright, if you got through all of that rambling, THANK YOU. I'll try to do better about blogging, I promise.

XOXO

Written By A Single Woman

 

This is probably the last post I will write as Miss Chelsea! 

It's hard to believe that the day is finally here. I've been asked by folks how Mr. Spots and I survived our relationship after being diagnosed with melanoma. The truth is, it wasn't easy. In fact, we broke up when I moved the 7 hours back home to my family while I went through the 3 months of treatment in New York. Despite the distance, despite the emotional roller coaster we were both on, we found our way back to each other. In fact, I would say we found the relationship we were both looking for.

Savannah, Georgia 2011

Our first vacation together following my first surgery

We were sitting in the living room last week when Mr. Spots randomly said, "We have come a long way." He's completely right. Almost 4 years ago we were just two strangers at the same wedding. Now we're the bride and groom! 

St. Patrick's Day 2012

I thought I would take this time to thank you for your love and support throughout this journey. You all felt for me when we were going through the trying times, you cheered when I posted those pictures of us together on my 6 month Cancerversary, you sent your love when he popped the question. We've appreciated all of your thoughts and prayers not just for my health, but for our life together. Thank you.

As I walk down the aisle, I promise, I will know just how lucky I am. 

Moments.

I had a moment this morning. You know, one of those moments that you're almost embarrassed to tell anyone about because it's so out of character for you. One of those moments where you say to yourself, "OK. Get it together, girl!" Yeah, I had one today.

 I was driving out of my neighborhood this morning when I had to stop for a school bus. I sat there and watched a family prepare to send their baby girl to school. It was obviously her first day of kindergarten. She had her big book bag, both parents, and her baby sister cheering her on. The parents put her on the bus, the school bus driver sat there while they waved to each other, then the doors closed and baby girl was off for her first day of school. The parents continued to wave for a few seconds, and before I could even drive away, both parents started crying. Both of them, in the middle of their yard, sobbing. Naturally, I started crying too. It was like watching a damn Hallmark commercial. (Seriously wish I had recorded it for the family. It was special.)

Ah, special moments...

...Moments I want to have one day.

Thinking back on this special moment  made me remember I haven't shared my special moment with you! My bridal shower last weekend!

 My mom came in on Friday night as a complete surprise to me

as I thought she had to work!

I should have known,

mom doesn't miss milestones!

 My awesome cupcake dress cake!

(Thanks, baby sister!!)

With the amazing hosts:

 my baby sister Cara,

and the gal who introduced me to my future husband!

They threw a great--totally me--shower!

Apparently there is an old wives tale that says the amount of bows

you break indicates how many children you will have.

The one bow I broke--even though I tried not to--

was on the present my future husband wrapped!

How appropriate.

And hilarious.

I can't wait to use these October 18th!

It was such a special weekend. My mom was in town, my mom's best friend from Canada drove in for the shower, Mr. Spots' family joined us, and a few women who are special to me joined us for a great shower. It was personal, relaxed, and sweet. Absolutely perfect.

It was a day I once wondered if I would get.

When the reality of cancer started sinking after they diagnosed me with stage 3 malignant melanoma, everything I may not get to do ran through my head. Days when my anxiety levels are high--cough SCAN DAYS--cough--It still runs through my head. Would I get to marry my guy? Would I be a Momma? Would I get to grow old? 

To be able to marry my guy on October 18th really will be a blessing for so many reasons.

Non-existent bucket list item, Marry the love of my life, will be complete.

...and I can't wait.

The Negative Committee

 

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We all have them, The Negative Committees, that sometimes take up more time than they are typically allowed. Usually my Negative Committee only pops up right around scan time. I acknowledge it and I move on. I am normally good at pushing aside the worries and getting back to my MelaNormal life. I feel like living my life is one of the best ways to get revenge on melanoma. It's my way of telling melanoma it isn't winning. Lately, it's been hard to keep the anxiety away. I'm fine as long as I'm busy, but it's at night when I'm sending my good juju towards my friends that The Negative Committee begins to show her ugly face.

I know why. 

When I was first diagnosed with stage III malignant melanoma, it was a complete surprise. I was not expecting one little mole to turn my entire life upside down. Even after the first surgery I didn't know what I had ahead of me. Through my research and meeting friends online I quickly realized that melanoma is not going to be something I heal from and forget. It's always going to be there. There's always going to be the need for observation. I will forever be a cancer patient. That took a long time for me to grasp. If I'm being honest, sometimes I still don't think I totally grasp it. Thankfully I get to live my life in a way that doesn't force melanoma to be on the front burner anymore. I get to be a healthy daughter, a silly girlfriend, a crazy live-in-girlfriend-not-yet-stepmom to the kiddo, a loving sister (HA! I try, sissy & baby sis!), etc. I am one of the lucky ones.

So, why is the Negative Committee back in session? I am far better off than others! I've hesitated blogging about this, so try to understand...The Negative Committee has been on overtime in my head lately because  seeing my friends advance to stage IV has been very difficult. I'm scared for these people. I ache for their families. And then, late at night, I see myself in their shoes.

People sometimes question why stage III patients receive CT scans so often. This year I saw how important those scans actually are for us. I witnessed how quickly one can go from No Evidence of Disease to stage IV.  Perfect scans, clear for 2 1/2 months, then boom, melanoma in multiple locations. It happens so quickly.

It terrifies me.

I'm not uneducated anymore. I can't hide behind my "it's just skin cancer, it's OK" attitude. I know what it can do and how quickly it can do it.

 Pinterest

Some would tell me that one way to avoid this added anxiety would be to take a step back from all things melanoma, to put melanoma behind me. Well, that's what people don't realize. These people are my friends. Selfishly, their situations terrify me. More importantly, their situations break my hearts because of the ways it changes their lives! These aren't statistics I'm reading about, these are my friends. I cheer for them, I cry for them. I'm going to celebrate with them when they receive the news that they are once again showing no evidence of disease. (And it will happen, girls.) It's that simple.

The Negative Committee has officially outstayed her welcome. Maybe I do need to stop being afraid to dream of No Evidence of Disease

...for all of us.

The Finish Line

Source

I ran in my first 5K yesterday to raise money for a local war hero, 22, who lost 3 limbs during his third tour in Afghanistan. I have to admit, running isn't as easy for me as it used to be many moons ago. Thanks to my sister's encouragement and that-day-training, I made it...even if it did take me 41 minutes and 7 seconds.

Before the race

I have walked 2 other 5K's, but I never actually ran in one before yesterday. Let me tell you, when I saw that finish line, when I heard those cheers, when I crossed that line, I had to hold back a sob. It was one of the proudest moments I've experienced. I didn't think my body could do that anymore. Thanks to the assistance of my baby sister and my boyfriend, we did it. All of us.

After the race

Once my brain started functioning again, I started thinking that we all have that one finish line we desperately want to cross: We want to be survivors.  We want the treatment, we want that special cure, and we want to return to our normal lives. Sadly, melanoma is not like that. There is no true finish line. There is no cure. We tackle, we treat, and we live. We live with our new type of normal, MelaANormal, Life with Melanoma.

And we win the best prize:

Life.

Those 4 Words I Was Waiting To Hear

It has been an awesome week. Long, but awesome. 

Now we are beginning a 

3 day staycation weekend? Ah, perfection.

Pinterest

In honor of the long weekend, I am linking up with 

http://www.frommygreydeskblog.com/

for High Five For Friday!

Let's recap on the awesomeness of this past week, shall we?

After all, it's not every week you are asked

those

4 words you've been waiting to hear.

1) I got to spend a super fun day at The Greensboro Children's Museum

with Mr. Spots, his kiddo, his sister, husband, and the twins!

While they played,

so did I...

 2) I received the Save the Date
for The Skin Cancer Foundation Gala!
(No pictures, sorry!) 

3) I booked an interview with a local news channel
to share details on how I have used this blog
to promote skin cancer awareness.

4) I actually slept through the night.
*OK, I got up to pee once. 
(Just once is unusual. Smallest bladder ever!)

5) I have important news to share...
and I can't focus on anything 
until I tell you........

 I heard that 4 word question that

I had been hoping and wishing to hear:
"When can you start?"


I GOT THE JOB!

Starting September 24, 2012
I will be a full-time employee for
the local
Veterans Administration Medical Center.

 I have wanted to work for them since I graduated from college,
and I finally, finally, finally
got a job there.

While I love the company I work for,
and all of our prosthetic patients,
I really feel like I can make a difference 
at the veterans hospital.

...even if all I do is help them smile.
I want to give back to those
who give so much for us.

Go enjoy your weekend!

I am celebrating by going to bed early tonight.
I'm beat!

Have a wonderful and safe labor day weekend.
Don't forget the sunscreen!
XOXO