I'm a Woman, What Do You Expect?

Women: We get one thing, we want another.

I received a phone call today that changed things once again! A research nurse from Sloan Kettering called and said that I am actually not disqualified from the clinical trial. Since the melanoma was an in-situ, I am still able to participate. I will be closely monitored by my dermatologist, and it will be noted in the research that I was diagnosed with an in-situ 1 year and 9 months after beginning the trial.

At first all I felt was relief! I was not being fired! (OK, I can be a drama queen. It felt like they were saying, Hey! You aren't healthy enough anymore! Get out!) Now I'm wondering what my doctor is going to suggest on Friday. I'm on a clinical trial to see if the drug will prevent melanoma from spreading, yet I was diagnosed with a new primary.

Is it common for melanoma patients to have multiple primaries? Do I continue on this trial even though whatever I'm getting is obviously not working since melanoma showed her ugly face again? Is the drug (ipilimumab) even supposed to keep our bodies from developing a new primary or does it attack the internal organs?

I turned to Google for answers. According to Cancer.Gov, "Risk of a second primary melanoma following diagnosis of a first primary melanoma is approximately 5% and is greater for males and older patients.") Um, I'm not a man, and I'm not old. What does this say about me?

I can't help but remember how "unusual" my doctors said my case is. There's the age factor: my first oncologist was amazed at how young I am, my second oncologist told me I'm his youngest patient. I have no family history. According to my first oncologist, melanoma only had a 10% chance of spreading to my lymph nodes, yet it did. Melanoma was found in lymph nodes on both sides of my body which is apparently very unusual. And now I have this new primary.

I'm a mysterious woman.

I just hope my oncologist has some answers for me on Friday, including boring scan results!

Healing

Thank you all for your kind words, emails, and texts this week. While my new primary melanoma was quite a shock to us, my family and I truly appreciate the support you continue to send our way. We will head to New York in just a few days for scheduled CT scans and to evaluate the situation with my doctor. He has been on vacation this week, so he doesn't even know of my new excitement. I just hope he doesn't have anything exciting to tell me....I prefer boring scans, Dr. D. Please.

Thank you again for your well wishes and prayers. You've helped make this week easier.

The Latest Guest: Melanoma

Some guests are not welcome in my house. Melanoma most definitely tops that list. Yet despite not willingly allowing her in, after 2 years and 2 months of showing no evidence of disease, she has shown her ugly face and plopped herself down on my back.

I went to the dermatologist a week ago for my routine full body check that I scheduled after finding a mole on my lower back that felt just like my first melanoma. It looked fine, but it felt like a scab. I knew that wasn't healthy. While the dermatologist told me it was probably nothing to worry about, he took it off because he is one of the few doctors who actually listens to his patients! Well, when I was at work yesterday, my dermatologist had failed to reach me since I was working in a different area of the hospital, so  he reached out to my boyfriend. I was with a patient when I see my boyfriend's phone number come up on my work phone caller-id. I didn't answer. Then the receptionist calls me. I picked it up because I had a gut feeling something was wrong. Right there, with a patient standing next to me, Bryan told me the dermatologist had called, the mole was melanoma.

I felt like I had been kicked in the gut.

Unlike my first melanoma, I have caught this new primary in its very early stages--in-situ--which is a great thing! I am so relieved that I caught it before it could go further; however, because it was melanoma, I have been kicked out of the clinical trial that I had been doing. Yep, even though it is an in-situ melanoma, I am kicked out since the point of the trial is to see if folks who are receiving the drug (ipi VS placebo) stay NED longer than those who receive the placebo.

I feel like I'm on a roller coaster of emotions. I am thrilled that the new melanoma was caught in the earliest stages and only requires a wide excision to get clear margins; however, I am bummed that I'm kicked out of the trial because it meant so much to me. I was determined to give my body (and a lot of freaking blood) for research because I want them to find more treatment options for future melanoma warriors. I hated hearing "the cancer is advanced but not enough for treatment, we will watch and wait " when I was first diagnosed. I don't want another person to have to hear that. Having no control makes me feel helpless.

So, now what?

I go tomorrow morning to have the excision done in hopes of getting clear margins. My (wonderful) dermatologist called me yesterday with the news, but did not want to schedule anything until he spoke to my doctors in New York. He called this morning around 7:40 and gave me the scheduled time for the excision, and confirmed that I am indeed off the clinical trial. (I had talked to the research nurse at MSK, but my doctor is on vacation so I had kind of hoped she was wrong.) 

I was already scheduled to go to New York for my next set of scans/infusion on March 28th, which I will still do, and I will meet with the doctor on the 29th to discuss the results and a new plan of action. If my scans show no evidence of disease--which I am praying like crazy for--we will continue to do scans every 3 months and I'll get back to the healthy life I'm in love with. If the scans show something, we will begin a brand new journey.

They will be testing me tomorrow to see if I have the BRAF mutation. Although I have had melanoma for 2 years and 2 months, I have never been tested because I have remained NED. If I have the gene and I do advance to stage IV, there are more treatment options. I'm hoping I don't need them.

So, that's where we stand now. I gave myself a day yesterday--less than 24 hours--to be down in the dumps and mourn the presence of melanoma. Yes, it is only a melanoma in-situ--thank God--but it's still melanoma and I had no desire of ever meeting her again.

These last 24 hours have reminded me just how important it is to pay attention to my body. Yes, until now, I had no evidence of disease, some would say I was cancer-free, but we melanoma warriors know the dilemma with that statement. Not to be a debbie freaking downer, but we have to stay on top of this disease because there is no cure. Take this situation for example. This is a new primary melanoma 2 years and 2 months after my initial melanoma. What if I had simply gone back to living my life like melanoma never happened? Man, I don't even want to think about what could have happened!

My advice to you, don't push aside that follow-up appointment just  because it doesn't fit in with your schedule. See the damn doctor. I know it isn't fun, but if melanoma has to show up again, find it before it's too late.

 

*Thank you to everyone who has reached out to me with advice, well wishes and prayers. As usual, you were so kind to me. I truly appreciate each and every one of you.

The Day I Got Called Carrie Bradshaw

...OK, so that day is never going to really happen as I just don't have enough jaw dropping fashion choices; however, during the super awesome radio interview with Dr. Dan of The Dr. Dan Radio Show out of Austin, Texas, there was a half a second where I got called Carrie Bradshaw. And I loved it.

Me as a mini-Carrie

Actually, I loved the entire conversation! It was so fun to talk to Dr. Dan Ladd, a dermatologist in Texas and his co-host Lurleen Ladd. Lurleen is actually the co-founder of The Shade Project which is an organization that has an opportunity to win $10,000 that would be applied towards providing a shady place for kids to play! I encourage you to vote EVERY day! Vote Here!!!

The radio show really was a lot of fun. I encourage you to listen to it here: http://siteadmin.talkradio1370am.com/sites/default/files/audio/chelseasegment.mp3

Listen to the radio show & vote for Lurleen all at the same time! ;-)

I'm off to the dermatologist tomorrow. I have some funky area on my back that needs to be removed! One more scar is one less mole I have to worry about!

Happy Tuesday!

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.

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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.

Red Carpet Paleness

Sometimes I feel like we need to defend our pale skin. I explain reasons for why it's far prettier than the tan glow that so many desire. (Cough No-Tan-Is-A-Healthy-Tan!) However, reading the celebrity magazines about the Oscars this week made me realize that Hollywood is noticing how beautiful pale really is!

Amanda Seyfried

Image JustJared.Com

Anne Hathaway

 Image JustJared.Com

Naomi Watts

glamour.com

Jennifer Lawrence (My favorite! She's so REAL!)

JustJared.Com

Even Jennifer Aniston looked far less tan than she normally does:

http://www.allure.com

The women looked fabulous and healthy, don't you agree?!

My Date With Politicians

I know. I'm officially a blog failure. I kept you waiting 2 weeks for an update. I'll be honest, I was so bummed following my day in Richmond, I really needed a break from all things melanoma. So, I took it.

Back to that day with a group of mostly bow tie wearing politicians...

I grabbed my glasses, squeezed into a pencil skirt, dug out a blazer and headed to Richmond on Valentine's Day for my date with a group of politicians to discuss SB1274, which would have banned children under age 15 from tanning and would have required teens 15-17 to have written parental consent before using public tanning beds. Before I get into the details, I must say that I do not regret going to the meeting. I told my story, I met some great people, and I believe there will be opportunities in the future that are results of that trip.

The meeting was held in House Room D, located in the General Assembly building in Richmond, VA.
*I took notes while others were speaking, this may not be the best blog post, but I want to make sure to include all of the important comments.

 

I was lucky to be seated with Taylor, a high school student who created this bill with her classmate Emma, and presented it to Senator Barker. Taylor, her mom and Taylor's government teacher were all such sweet people. It was truly a great experience meeting them. This bill started as a project for their class and it went further than they could have imagined!

When it was time to discuss SB1274 Senator Barker quickly presented the outline of the bill to committee members. Taylor spoke on the behalf of minors and presented the committee with reasons why the bill is needed. She mentioned something that I found to be very interesting; Taylor said that many of her classmates are surprised that tanning for minors is not already outlawed! I mean, they outlaw smoking, right?! Following Taylor's speech, a pediatrician provided more research as to why this bill is needed. She stated that she believes a bill needs to be made that would prevent all minors from using tanning beds. Delegate Spruill asked the pediatrician, "Can an 18 year old get cancer as easily as a 17 year old?" *I thought for a minute that he was on our side, that he sees the need for a ban on tanning; however, I quickly realized my mistake. (More on that later.) Delegate Spruill stated that if a bill is placed, it should not be for teens who are 17 because of our inability to control them. Senator Barker politely told him that we are discussing minors, children, and he believes he did a great job controlling his own kids.

With the young lady who helped write SB1274.

 

Then it was my turn to speak. I had a general outline of a speech that I re-wrote in my head numerous times during that 2 hour and 45 minute drive to Richmond. What I really said was a version of this:

"Hello, my name is Chelsea & I'm here today to urge you to pass this bill. I was 14 years old when I began tanning because I wanted to be pretty in my prom dress. Although I was somewhat aware of the risks, I was far more concerned with being beautiful than the possibility of skin cancer. Imagine my shock when at 23 a dermatologist told me that I have an advanced stage of malignant melanoma, the deadliest type of skin cancer. Since then there have been multiple surgeries,numerous trips to the chemo suite, and an always present fear of this silent killer, melanoma. I remind you, UV rays from indoor tanning are classified by the World Health Organization as class 1 carcinogens, just like tobacco smoke. I ask that you pass this bill not as a way to take away rights, but as a way to save lives. I beg you to pass this bill with the hope that another young girl will not have to hear the words 'it's cancer' all because of a stupid habit she developed years ago. You have the opportunity to save lives. I ask that you use it."

What I really said, who the heck knows, but The Virginian-Pilot did pick out a few key lines from the speech. You can read their review of the meeting here: http://hamptonroads.com/2013/02/virginia-panel-sidelines-bill-ban-childhood-tanning)

Chairman Kilgore thanked me for coming to share my story & a representative from The American Cancer Society spoke following my speech. He gave the statistics, he presented the committee with the hard  facts, and he reminded the members that this cancer is killing our young. (I found this article on their website while searching for something else. It's a great read.)

Once again, Delegate Spruill spoke up and asked, "What stops them from going to Virginia Beach and getting a sunburn?" He expressed his uncertainty about the bill and said that he would hate to put tanning salons out of business. Chairman Kilgore responded to Delegate Spruill with, "Get your own bill." 

Then there was the moment I was dreading: the moment when I had to stay quiet in my seat and listen to someone--particularly a tanning salon owner--speak about how there is no need for this bill. I was quite shocked when Mrs. Woods began her speech with, "It has nothing to do with tanning. It has everything to do with taking parental authority away." Mrs. Woods, who owns Copa Cabana Tanning in Chesapeake, VA, said that in her 20 years of business, she has never had a 14 year old in her salon (I'm calling BS on that!) She brought a group of people with her--about 6--and had them stand up and raise their hands if they tan. Only one lady raised her hand. Mrs. Woods reinforced the fact that she was not opposing the bill that could possibly hurt her business. In fact, she made subtle jokes about the damage tanning has done to her skin. (She even walked by Taylor and I afterwards and said "Let me move. You don't want the tan lady in your picture!") She did say that because she realizes that tanning can be dangerous, she makes sure to take extra precautions. Everyone who is employed by her is Smart Tan Certified, customers must sign waivers stating that they know the risks, and parents can withdraw their consent at any time.

Mrs. Woods continued to insist that she has an issue that the bill would take away parental rights, she said it would take away parental authority. One committee member asked asked Mrs. Woods why this bill upsets her when we have laws that forbids minors from drinking, smoking, smoking pot, and forces parents to keep their kids in car seats. Mrs.Woods responds with the fact that minors can have abortions. (Honestly, the room went nuts after that comment. There was laughing, shaking of heads, and loud groans from committee members. Mrs. Woods had her moment & it was quickly over.)

(I have to say that Mrs. Woods was very polite. She came up following the meeting and shook our hands, and said she hoped she didn't say anything to offend me. I simply half-smiled and shook her hand. I wasn't going to get in a pissing contest with her. I respected her for never saying that tanning is safe and healthy. She didn't pull the vitamin D card. She didn't lie about the risks associated with tanning. (That being said, the group who came with her was not as polite. They made rude comments while we were speaking, yet they became very angry when I shook my head to disagree with something Mrs. Woods said. One lady said something rude to Taylor, a minor, and her teacher turned around and told her not to speak to her again. She didn't. It wasn't the classiest meeting. At all.)

Of course there was a representative from the American Sun Tanning Association. He was so insignificant that he really doesn't deserve to be mentioned. He was pretty much laughed off the stand. Seriously, I was in the first row and couldn't even hear his speech because everyone was talking/laughing/carrying on like he wasn't talking. (Like I said, it wasn't the classiest meeting.)

The main concerns committee members voiced:

1) What prevents teens from going to the beach and getting the same sunburn that they would get from a tanning bed? (This was only voiced once by one member.)

2) Delegate Bell asked, "What happens if they get it wrong?" Everyone was initially confused by his question, but he explained that he didn't understand what would happen if a tanning salon owner allowed a minor to tan. He wanted to know the penalty if the tanning salon guesses the wrong age of the patron? He said, "...looks 19, doesn't get written consent, tans." He, and others, wanted to know who would be held responsible: the salon for failing to get the appropriate information and consent or the patron for failing to give appropriate information? *The lack of penalty was a big conversation piece. This is definitely something that will have to be worked on before the bill goes in front of a committee again. Delegate Bill flat out said he opposed the bill because it would take away the rights of parents; however, he treated the bill in a fair manner by asking a lot of questions about the penalty. He stated that it was "commendable" of Senator Barker to present the bill; however, he didn't see why it was necessary. Chairman Kilgore responded, "...because he has a conscience."  (If you didn't pick up on it, Chairman Kilgore tells it like it is. I liked him a lot.)

The committee did not vote on the bill, they tabled it. This means that the bill died this year; however, it can be presented again next year. Following the meeting, one delegate approached me and offered her support. She basically said that she knew I would be bummed, but she wanted to talk to me about certain reasons why the bill was tabled. She said that many of the committee members heard about the bill for the very first time that day. They were not expecting it. Secondly, the bill needs to be stronger. The unknowns need to be answered. The bill needs to sound solid. Third, there needs to be a penalty for those who do not obey the law. What's the point of saying tanning salons need to get written consent before their young patrons tan if no one is going to be held accountable if they fail to get that consent?

My gut tells me that this committee would not be opposed to an under 18 tanning ban if the bill is more defined, the penalties are outlined, and the members are made aware of the bill. I know it seems like a hassle to email your committee members, but I learned just how important it really is. They need to hear from us! The louder we are, the less likely they are to shove something aside for another year. 

Here I am with Taylor & Senator Barker

Attending the meeting was an incredible learning experience. I realized just how much work we have ahead of us; however, I saw firsthand that maybe we should aim higher and protect ALL minors, not just some of them! 

*I would like to thank Taylor and her classmate Emma for their work on this bill. Had they not created this bill for their lovely government teacher, I do not believe teens and tanning would have been discussed at the general assembly this year! I would also like to thank Senator Barker for bringing this bill to the committee. Although the bill was tabled this year, I believe we created an impact on the members. They will think of us when their daughter wants to begin tanning for prom season...Let's hope they make the right decision!

I'm already planning for next year!