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

Sweet Emily

You're going to have to forgive me this morning, but I'm going to share something that's not the slightest bit related to melanoma.

 

http://www.emilyinthecity.com/ 

This is Emily. I had the honor of meeting Emily when I was waiting at Sloan Kettering for an appointment with my oncologist a year or two ago. Emily was waiting to see her oncologist as well. Drawn to her by her Virginia Tech sweatshirt, my mom and I began to chat with her. Emily had spunk. She may have been battling an incurable brain tumor, but the girl had one of the best attitudes I've ever seen. Over the last year, Emily's cancer progressively got worse. She was constantly in and out of the hospital, quickly losing her vision, etc. However, her spunk was still there. With the help of her friends, and even strangers, Emily was able to cross off a few items from her "to- see" list before her vision got worse.

In January I received a text from Emily asking me about Yervoy. Her doctors, with no other treatment options, and stating that Emily only had a few months to live, thought that they would do a trial with Yervoy. She wanted to try whatever she could that may possibly give her a few more months here with us. I shared my slim knowledge of the drug, told her how my mom and I continue to keep her in our thoughts, and Emily encouraged me to be healthy and well. I didn't hear much from Emily after that day in January.

I logged onto Facebook yesterday and saw the post I feared: Emily passed away yesterday at the age of 26.

Why am I sharing this with you on my melanoma blog? For starters, Emily was an awesome gal. She was a kind person, and even during her darkest moments, she cheered me on. Emily also had a way with words. I encourage you to check out her blog: http://www.emilyinthecity.com/

As an ending to this post, I want to share something Emily once wrote:

"Recently, two people have commented on all the fun I'm having on FB and in pictures. First, happy to trade--really, dying and relying on your parents, is not "fun." I'm just doing what I would encourage you all to be doing: live. Just live every day to YOUR fullest. In fact, because both your hands work and you haven't fallen three times in two days due to balance issues, YOU should be having more fun. If you're not; you're doing it wrong. If you hate something in your life --change it."

I think we can all learn a little something from that.

Rest now, sweet Emily.

"How do you live your life? I live mine with both eyes open – even if only one takes in the picture." 

Emily Morrison

"Is My Cancer Different?"

 Source: Pinterest

When you hear that someone has been diagnosed with the big C what is the first question that pops in your head? For me, I want to know what type of cancer. I know when it boils down to it "cancer is cancer," and no matter what type of cancer a person has, it's horrible. However, the statement "cancer is cancer" really isn't that true.

Let me backtrack.

There is a new movement that forces us to ask ourselves, "Is My Cancer Different?" Maybe I would have answered differently had I not been diagnosed with melanoma already in my young age, I don't know, but now I want to scream it from the roof tops: MY cancer is different! Every cancer is different! The same cancer in different patients is different!

When people first find out about my history with melanoma they ask if I had to have chemo and radiation. I would have asked the same thing 4 years ago! However, we melanoma patients have had that frustrating conversation. You know the one, that heartbreaking conversation with the oncologist where he informs us that melanoma doesn't respond to the typical chemo cocktail.

I remember calling my Gran after that first meeting in New York, crying in the bathroom floor, because the doctor basically said the options are limited when it comes to stage 3 melanoma. They just can't treat our cancer like they do other cancers. It doesn't work!

This is why it is so important to be followed by a melanoma specialist. On their website Is My Cancer Different? discusses how patients with the same cancer are still totally different: (View their 2.23 minute video here!) I think many of you have already seen that in our melanoma community. Some of us have been a part of the same clinical trial and had very different reactions! We can't give up though just because one treatment works for one person and not for us. We move on to the next thing that may help!

I encourage you to take a few minutes and view their website, Facebook, and Twitter.

...And don't forget to ask yourself the question: "Is My Cancer Different?"

You know it is! Treat it like it is!

XO