Monday, March 17, 2014

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


3 comments:

antiquerose said...

Ya I think it would be wrong to turn down that much money that would go towards cancer research. I can also understand people's reactions - I think it's great to donate money to cancer research, but how does one also not support universal healthcare? Say this research brings us closer to a cure - it'll only be for the people who can afford it.

Anonymous said...

I love your blog, attitude, hard work, and tremendous fight. :)

Rich McDonald said...

David Koch is from my hometown (Wichita, KS)and Koch Industries has its corporate headquarters there. (Not that I know them, my family didn't circulate in local billionaire circles.) I don't agree with all of his and his brother Charles politics, but I couldn't care less. The Koch brothers and the company are very generous supporters of many charitable causes in Wichita and elsewhere. So, thank you David!