Wednesday, March 19, 2014

Ripples of Healing


A few months ago I wrote about a man I met on a day when he "wasn't kickin' too high." The second time I ran into the stranger, he cried in my arms in the middle of a busy hallway and told me that after 8 years of being cancer-free, the cancer had returned. My heart broke for him as I watched the pure anguish on his face.

A few weeks after that very unexpected interaction, the fella came to see me. He wanted to apologize for breaking down in front of me, just a strange young girl who asked how he was. I cut the man off mid-sentence and asked him to hold on, that I had something for him. Ever since he confessed to me that he had already made up his mind to refuse treatment if the cancer had metastasized throughout his body, I knew what I needed to do. I ran back to my purse and grabbed the lucky rock Julie's mom had given me. I ran back into the room, grabbed the man's hand, and placed the lucky rock into his palm. I quickly said, as my voice began to shake, "I've been in your shoes. This was given to me by a woman who means a lot to me, it brought me good results. It's your turn now." The man began to cry. He hugged me and we said our goodbyes.



I didn't forget about the stranger. In fact, he crossed my mind a lot. I knew he was no spring chicken, but with an attitude like his, I had faith he would fight. I just hoped I would hear from him again.

This afternoon I received a call at work from the front desk secretary. She told me there was a man in the waiting room asking to speak with me. That's not really that unusual as doctors send patients down quite often to coordinate their appointments. She said it wasn't for a patient. Odd.

I walked into the waiting room and the stranger stood up. I immediately hugged him. We may not even know each others last name, but we shared a moment. I expressed how excited I was to run into him again. He cut me off and grabbed my hand. In it, he placed the lucky rock, and held my hand. "I was so touched the last time I saw you that I didn't comprehend that you had cancer too. I came to bring you the lucky stone back because I had my surgery, the mass was benign, the cancer is not back." I yelped and pulled him into a hug.

Even as I listened to him talk about how he's so much older than I am, how cancer is supposed to happen to people his age, not mine, I couldn't get over what was happening at that very moment. This stranger actually kept a rock given to him by some random girl he was likely to never see again. Not only did he keep it, he told me it brought him comfort when he needed it, but now it was time for me to have it back, that it's my turn for a little luck.

Honestly, when I gave him the stone I really thought that was the last of it. I figured he would remember me for a sweet gesture and that would be that. To see him today, to hear him say the words that the cancer is not back, to have that lucky rock returned after it brought him comfort during the months filled with fear, that was a feeling I won't soon forget.



Two strangers. One lucky rock. Two lives forever changed.

Life sure is sweet.


(To read the previous post about this man: click here)

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


Sunday, March 2, 2014

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.



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

Tuesday, February 11, 2014

Pointing Fingers

I was browsing my Newsfeed this afternoon when I noticed a post shared by Stand Up To Cancer: "People who use a tanning salon before age 35 increase their risk of melanoma by 75%, according to the CDC. These gloomy winter months, please tell your loved ones: an artificial tan is not worth the very real price." (This article was also posted: Tanning beds used by more than a third.)

How right they are to remind folks the danger of tanning during these gloomy months! I'll admit, when it was -10 degrees, the memories of heading to the tanning salon to warm up did flash in my head! Ah, the warmth! It isn't often that Stand Up To Cancer posts anything regarding skin cancer and melanoma so it was a great reminder to see.

I started browsing the comments, impressed that so many people voiced their support of tan-free skin. Then I came across this one comment that actually made me stop what I was doing: "Being a cancer survivor an having no choice in the matter. I have no sympathy for people who fake bake an then they whine when they end up with cancer" (Directly copied & pasted from Stand Up To Cancer's Facebook page.)



Hold up.

Stop a minute.

"I have no sympathy"
"Whine when they end up with cancer"

Did this dude, a cancer survivor, really say that because people make poor decisions during their lives, they shouldn't feel grief when they are faced with those consequences?

I reread it. Yep, that's what he said. (This must be what smokers feel like after being diagnosed with lung cancer. Ouch.)

I gave him the benefit of the doubt that he just picked an insensitive way to respond. So I responded to him: "I don't think you'll find many of us in the melanoma community who expect people to hear us "whine" after we participated in activities that may have caused us to battle a horrifying and incurable cancer. You WILL hear us share our stories with hopes that others learn from our mistakes. Please be careful what you say. Melanoma is like lung cancer. We aren't ALL "at fault" for our diagnosis."

In my opinion, telling a melanoma patient who used to tan, "Sorry, idiot. You dug your own grave" is like looking at a lung cancer patient who used to smoke and saying "Shit happens. You picked up the cigarettes. Deal with it." Yes, both of statements may be true, but would we really say that to someone? 

Would we really blame them for their cancer?

This fella responded to the comments: "Did u read my post all the way through. I said people that use tanning beds know the cosequences before they ever step foot in one. Why be shocked when people lay in one countless times a week ?? I never said anything about snyone who got melanoma any other way." (Again, this was copied & pasted directly from Stand Up To Cancer's Facebook.) 

So this got me thinking. It's 2014, can we really claim to be uneducated about the dangers of tanning beds?

I didn't even have to turn to Google right away. I thought back to my morning commute into work. I was listening to the radio when a commercial came on promoting Tan for Free at the local tanning salon. At the very end of the commercial, the lady says, "Please tan responsibly." 

Then I turned to Google to browse:

-In 2012, Dr. Mercola said, "High-quality indoor tanning devices are safe if you precisely follow the simple guideline of never getting burned" (Read the full article here.)

-Salons continuously state the "health benefits" associated with year long tanning. There's even a full website called Tanning Truth that explains the perks of using these coffin like beds. Then there's salons like this one who have a full page listing reasons why you should tan. This one particular salon even states that you should tan indoors rather than outside. (To view their list of crap, you can click here.)

-During an interview with PBS NewsHour, Bridget Huber, who wrote this awesome article I was thrilled to be included in, stated that the indoor tanning association believes groups like the American Cancer Society and dermatologists have scared people into thinking that the sun and tanning beds will cause cancer. Huber stated, the tanning industry believes "these groups are possibly killing more people than tobacco did by causing what they portray as a deadly epidemic of vitamin D deficiency."

-Who is at the highest rate of believing the lies tanning salons spread: Teenagers. Nearly 30% of teenage girls are using tanning beds. (Source.)

-According to this salon, "Scientists have not found any indication that moderate and responsible indoor tanning over an extended period of time causes skin damage. It is important that you follow the recommended exposure based on the tanning unit used and your skin type. Skin damage, including skin cancer, could occur if a person overexposes the skin to UV."

-"Tanning beds are the best source of vitamin D." C'mon, don't act like you haven't heard that over and over again.

I could go on and on and on--I won't, because I want to watch Sunday's episode of Downton Abbey--but you get the point. It's 2014 and tanning salons are still pushing the benefits of indoor tanning. While some adults may have learned that the salons are just trying to make a buck, 30% of teenagers are still subjecting themselves to the class 1 carcinogens. Until minors are outlawed from making the decision to tan, they will continue. It's only natural. We still live in a society that values golden skin. More than anyone, teenagers are influenced by society. Of course they are going to continue to tan if they are allowed. The threat of cancer? That's years away.

Back to my original point, Do we know the risks when we step foot in a tanning bed? Should we be blamed for our cancer since we did tan? Should we forfeit our right to "whine" since we put ourselves in this position?

I responded to his post:

"But do they really know the consequences? That's pretty bold to say since tanning salons shove the "benefits of responsible tanning" down your throat. I began tanning at age 14--the law allowed this--because I wanted to be pretty in my prom dress. All the other kids did it, why shouldn't I? I tanned off and on until I was 21. It was right around that time that I figured that maybe tanning beds weren't great for me. I cancelled my membership and never stepped foot in one again. 2 years later, I was diagnosed with stage 3 malignant melanoma. I know that my immature and uneducated decisions more than likely caused me to be diagnosed with an incurable cancer at age 23, but what can I do about it now? I can "whine." I can share my scar pictures. I can advocate to our local government about why we need to protect our minors against these beds. I can do what needs to be done so that another young girl does not make the same poor decisions I made. But, I will not be suck it up and be quiet just because I did this to myself."

I've met melanoma friends who never used a tanning bed. I've had to say goodbye to friends who never had a sunburn. These people had no control over their cancers, just like an ovarian cancer patient has no control over hers. Some would say I have no right to bitch about my cancer. I did it to myself. 

Here's the thing, Mr. Internet Man, no one will ever beat me up as much as I beat myself up. 

I did the deed and now I will always pay the price. I get it. I also get that this guy probably wishes he could do anything in his power to prevent his cancer. I understand he may be in pain, he may still be emotionally healing, he may never understand how one could make such a decision that could risk their life. I respect that pain. I understand that pain. But here's the other thing: cancer's a bitch, no matter how you get it and no matter what kind you get. Even if I did bring it upon myself, I still want to fight it. I still deserve to fight it.

 So while this fella may never understand the importance of sharing our stories--whining for our cause--I will continue to do so because it's just so obvious how much work still needs to be done.

Sigh.



Monday, February 3, 2014

Words From a Friend

Sometimes I receive emails from people that I automatically know I'll become friends with. This was one of those situations. Having read her story, I knew that it was one that needed to be shared with all of you.  I'm so thankful she agreed to let me share it! So please, meet Chelsea, and share her words with someone who needs to hear them.


 "When I ran across Chelsea’s blog, I knew I wanted to know her. You see, not only do Chelsea and I share the same name, we also share an unfair diagnosis, which for both of us, is oddly in the same spot on our backs. I saw the picture of Chelsea’s scar that looked exactly like mine and felt an instant connection to this stranger miles away. When she asked me to share my story, I was a little nervous, because before now, I’ve never put it on paper. The feelings of it, well, they are just overwhelmingly strong, but the truth is, it needs to be told.
I’m one of the lucky ones, they say.  I never had to undergo chemo or radiation, and all my lymph nodes are still in place, but the truth of the matter is that melanoma changed me completely.  I was diagnosed at 18 during my freshman year of college.  The year prior was full of events that required me to be in evening gowns. There was prom, then the yearly pageant my school held, and don’t forget about those awful vocal music dresses that surely looked better on me when my skin was tan. Those moments in a tanning bed, defined my future.  While my friends were vacationing during Spring Break, I was undergoing a wide excision surgery to remove six inches of skin on my back all the way down to the muscle. This surgery was my cure, but it wasn’t completely healing, because the emotional scar runs a bit deeper and has lasted far longer.
The misconception associated with the word melanoma is that it will simply be cut out and everything  will be fine. I can’t tell you how many of my friends spoke those exact words to me when I shared my diagnosis with them.  Quite frankly, until I had my doctor tell me that there may be a chance that I could only have five to seven years left to live depending on my test results, I didn’t understand the severity either.  My friends couldn’t understand the situation I was in and it wasn’t because I had surrounded myself with people weren’t able to feel empathy; it was because they simply weren’t educated.
My family, they became my saviors, the people I laughed with to distract me from the constant terror I felt in my stomach, the people who held me when I cried, and the people who found strength  for me when I couldn’t find it in myself. In fact, it was my mom, who saved me. She was the one who had noticed the mole on my upper back that had gradually became dark black and she was the one who called me with the information from the doctor of my diagnosis. Often times, I still wonder how she found the strength to call me, her only daughter, to tell me I had cancer.  My melanoma diagnosis didn’t just emotionally scar me; it scarred every person in my family.
Life after melanoma is different to say the least. I’m far more cautious and I’m often fearful of reoccurrence. For the rest of my life, every six months, I will visit my dermatologist. I sit undressed in a brightly lit exam room while my doctor goes over every inch of my skin. These checks, more often than not, end with a biopsy of a something that looks suspicious leaving an open wound on my skin that takes weeks to heal. I then prepare myself to tell my loved ones that we are, yet again waiting on pathology reports. The chance of reoccurrence for me is 2% and while that may seem like a very small number, it is actually quite large in relation to melanoma.
I never dreamed that before I graduated college and said I do, I would be a cancer survivor, but it is my reality. I often have to remind myself to slow things down because facing a diagnosis that could have ended in death caused a horrible sense of urgency for me. Sometimes I have to take a moment to remember that I don’t have to live life so fast because God has given me more time and a chance to leave a legacy. I wasn’t lucky, I was blessed and I feel strongly that I am meant to educate others on how to care for your skin.  Unfortunately, I wasn’t educated on the effects of tanning, but don’t let that be your excuse. Don’t be like me. Your desire shouldn’t be getting tan. Your desire should be to stay alive. Educate yourself before you find yourself in a situation that educates you."  

Please take Chelsea's words and educate someone else on the true dangers of tanning. A big thanks to you, Chelsea, for sharing your story with others! I know it's scary to put yourself out there, but by telling your story, I know you'll save lives. XOXO

Tuesday, January 28, 2014

Wednesday, January 22, 2014

Please Help!

Do you live in Virginia? Do you know someone who does? I need you to step away from the cat pictures, and the silly Youtube videos for 3 minutes and fill out this form! :-) 

Why, you may ask?

On Thursday a committee in the Virginia General Assembly will consider a bill that would stop teens who are under 18 from using tanning beds. PLEASE consider filling out this form that will be sent to your local delegate that shows your support for this IMPORTANT bill. It takes less than 5 minutes & it has the possibility of helping to protect VA's teens! 5 minutes, folks!
 
https://secure3.convio.net/acscan/site/Advocacy?cmd=display&page=UserAction&id=10104 
 
Some people have mentioned that the form didn't go through. If so, please take an additional 3 minutes and check this page to see who your delegate is and get his/her email address. I know it's a hassle, but please let them hear from you as to why they should vote to pass this bill. Here's the link if you have trouble with the link above: http://conview.state.va.us/whosmy.nsf/VGAMain?openform
 
Thank you in advance for your help. Let your voice be heard!