Saturday, December 31, 2011

Another Melanoma Angel.

This morning as I was being lazy in bed, chit chatting with Mr. Spots about our NYE plans, and browsing Facebook, I saw my friend Al had posted that yet another one of our melanoma friends had recently passed away. When I saw it was Randi, the tears immediately began to flow. How could it be Randi? I just talked to her a few weeks ago. She sounded good, strong, sending me more advice about how to deal with this disease and what questions to ask my doctor....

Randi was a beautiful wife, a loving mother, and a dedicated fighter. I only knew her from the blogging and Facebook world but boy, she loved the men in her life. She fought because of them. She would tell you so.

Randi's story is a bit different than others that I have shared with you. Randi was diagnosed with stage III melanoma in 2005. She had all of her lymph nodes removed in one particular area, and then went on to living five years with No Evidence of Disease. Unfortunately, melanoma showed his ugly face in April 2011 by reappearing in her brain and then spreading to other parts of her body. 

Yes, you read that correctly. For five years, Randi was healthy. She passed away on December 29, 2011. 

When people question why I must go for scans every 3 months and why I am participating in a clinical trial even though I am "fine" now, this is why. There is no cure for melanoma. For many, I don't want to say most because that is far too negative and depressing, melanoma hides for a period of time and then reappears when you least expect it. It does not simply go away. I live in 3 month spans. If my scans are clear this next time, I will go another 3 months. If not, we will fight.

As you head out to celebrate the end of 2011 (good riddance) and the beginning of 2012, consider adding "Protect My Skin" to your resolution list. You may think you look prettier with a tan, but I am sure you would agree that you look prettier alive than dead. You may think that mole is nothing to worry about but it may be the same type of mole that began my stay in Hotel Melanoma. Consider it.

And please, as you celebrate, send a prayer to Randi's family. They have lost a beautiful wife, a loving mother, and their toughest fighter...

Rest now, Mrs. Randi. We will never be able to dance on the tables in Vegas now, sweet friend, but I promise to continue to educate, educate, educate. I know that is what you would want.

Saturday, December 24, 2011

"Have Yourself A Merry Little Christmas."

As of two hours ago, I am home with my family enjoying this holiday. I wanted to take a few minutes to wish you and your families a wonderful holiday. Step away from the internet, your worries, and your dark thoughts, and enjoy this holiday with your family. Make memories.

We are all so blessed to be here.

As a little girl, I grew up listening to the Carpenters Christmas record so it is only right that I share this song with you tonight.

"Christmas future is far away

Christmas past is past

Christmas present is here today

Bringing joy that will last

Have yourself a Merry Little Christmas

Let your heart be light

From now on our troubles

Will be out of sight

Have yourself a Merry Little Christmas

Make the yuletide gay

From now on your troubles

Will be miles away

Here we are as in olden days

Happy golden days of yore

Faithful friends who are dear to us

Gather near to us once more

Through the years we all will be together

If the fates allow

Hang a shining star upon the highest bough

And have yourself a Merry Little Christmas now "

Merry Christmas, friends. XO

Monday, December 19, 2011

"You're Famous!"

Boys and girls, it is weird to log onto a famous foundation's website and see a video of yourself....

I was taking a relaxing bubble bath tonight when my phone started ringing. Since I had already talked to Mom like five times already, I wasn't expecting to hear from her again tonight. I answered, she said, "Did you know your interview is posted online?"


You see, I participated in a Skype interview with a Famous Cancer Foundation back in August. (I will talk more about this experience when I am given permission!) I posted a link to an article from that website tonight on Facebook. When my mom went to go read the article, she saw my picture on the right hand corner. They have posted 4 minutes of our interview! I didn't think too much of it, I thought mom just found it after playing detective, but then I received a text message from my baby sister: "You're famous!"

Well,'s 4 minutes of my interview!

PS) I swear I don't sound that annoying in real life.

*A special thank you to those people who made this happen. It was an honor. I can't wait to tell you all more about it!

Friday, December 16, 2011

Bald & Beautiful...Barbie!

I have always been a fan of Barbie. I had everything from the life size Barbie car (that I was too scared of to drive so I would stand on the back of it and sing......) to the Christmas Barbies to Ken and friends. I loved Barbie. Seeing this story online tonight made me love Barbie even more.

Thank you, Mattel, for making this little girl remember that she is a beautiful princess, with or without cancer.

Now, go make more of these dolls so that we can buy them so that another little girl with cancer can feel as special as beautiful Genesis.

***Oh, and Mattel, please donate a portion of the sales to childhood cancer research.


Wednesday, December 14, 2011

"May I Pray For You?"

I never talk about my cancer at work. Sometimes patients will say little comments that make me wish I knew them on a personal level so that I could share with them why I am "so" pale, but I know it would be unprofessional. Today, however, something happened that made it impossible for me to keep quiet. Today I heard the words, "I have been battling Stage III Melanoma for the past five years."

I couldn't hold back.

I grabbed his arm, and said, "Oh! I have Stage III melanoma too!"

(What can I say? I meet very few people who truly understand this cancer so I got a little excited.)

There we were, a 24 year old girl & a 60 year old veteran, bonding over cancer in the middle of a busy waiting room. We swapped war stories, he told me how he is glad I did not stay with a local oncologist as he is a patient at Duke, and then he looks up quickly at me and says, "Can I pray for you?"

I assumed that this sweet veteran who has his own battle to fight was going to pray for me on his own time. Oh no, this was not his plan. He wrapped my hands with his own, bowed his head, and began to say a beautiful prayer requesting God's healing and love. When he looked back at me again, we both had tears in our eyes. He kissed my hands, looked directly in my eyes, and said, "Take it from me, I am blessed to be here. Please never give up."

I will never give up.

Tuesday, December 13, 2011

Preach it, Sister!

There are few things that I admire more than strong and classy women. (I appreciate strong and honest men too...reason number 3121 why I'm in love with Hotel Melanoma.) I came across this article, How to Talk to Someone with Cancer, today while browsing Facebook. What type of cancer does the author have, you wonder? Well, she has stage IV melanoma. She gets it.

Cancer Girl's first Rule: "This is a bad time to be emotionally needy."
         As much as I want to be a good friend to everyone, sometimes my own fears are literally the only things I can handle. I am polite, and I try to offer as much emotional support as I possibly can, but I will admit that I will not be winning Best Friend of the Year anytime soon. I realize that hearing about my cancer is scary to some people, especially those closest to me, but when you shut down and start acting all weird to me, well, it ticks me off. I understand that you're scared, but this is my life in jeopardy, not yours. Please don't ask me to sugarcoat things because you don't like what you are hearing. Cancer Girl shares her experience with needy folks: "That’s why the relative who called me after my initial diagnosis to insist, “Tell me you’re going to get better. I need you to say you’ll get better,” is the person whose calls now go straight to voice mail.I
Cancer Girl's Second Rule: It’s a very bad time to disappear.
     I have been lucky that this has not really happened to me. Like I've mentioned a time (or 10000) I have an amazing support system. However, I do want to share a piece of Cancer Girl's advice. "It doesn’t take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured."

Cancer Girl's Third Rule:  Someone else’s dramatic life event is not your opportunity for closure.
        OH, this is a good one. I have heard from a lot of people since all of this started, the crappiest of crappy ex-boyfriends, and the girls who slept with said crappy boyfriend. Some of those people were sincere. Others probably heard the news through the grapevine and thought they better apologize and gain my forgiveness before I croaked. I never felt like it was appropriate to hear the apologies for how they treated me when I was healthy now that I am (was--since I am NED...??) sick. There is a time and a place for everything. Some of those people came to me because they were actually apologetic. Others, I do believe, just wanted to feel better about themselves. It wasn't the time or the place.

Cancer Girl's Fourth Rule: Remember it’s a fine line between curiosity and finger-pointing.
        Yes, I used the tanning bed. Sure, I got sunburns growing up. Yes, I should have known better. In my situation, my melanoma was (probably) brought on because of my mistakes so maybe I do deserve to blame myself. However, as Cancer Girl says, " Cancer happens to Marlboro-devouring rock stars and it happens to little babies. So keep anything that sounds like blame to yourself." I blame myself enough at 4 am when you're sleeping soundly.

Cancer Girl's Fifth Rule: "Similarly, don't tell them how to fix this."
      I appreciate all advice. Really, I do. I have learned more about melanoma and how I want to fight my fight because of the advice of others. However, especially in the beginning or when things get really scary, I just want someone to listen to what I want to do instead of telling me how I should do it. I do not like it when people get too pushy with me. Cancer Girl explains a great way to approach this subject: "If you’ve read of a promising trial or know the best specialist in the field, you can ask if they’d like the info. But don’t tell them that they have to move to the country or go macrobiotic, Helpy Helperton."

Cancer Girl's Sixth Rule: Don’t be hasty with the best-case scenarios.
       I try to be a very upbeat and positive person 95% of the time. Having said that, constantly hearing "You are going to be fine!" piss me off to the 10th degree. Of course I want to believe I am going to be A-OK. I want to be the 90 year old woman flirting with my hot doctor. However, I know the seriousness of this disease. I am the one the doctor is speaking about at my appointments. Please don't push "Everything is going to be OK" down my throat too often. Sometimes it forces me to feel like I cannot admit my true fears. 

     Currently I have No Evidence of Disease. What does that mean? Does it mean that I am cancer free now? Does it mean that I can completely start living my life like this was all a bad dream? Am I now a survivor? I am going to let Cancer Girl explain this one: "Even if things are going well, let it go at its own pace. I can’t count the number of times people have called me a “survivor” or said things like, “So, are you cured?” This happens a lot to those of us in the club. It makes us feel a little rushed here. Like you’re so eager to wrap this thing up and move on already." Be patient with us.

Remember, because I caught it so late, my Melanoma is not curable. However, I have, as they call it, No Evidence of Disease at this time.

Cancer Girl's Seventh Rule: On the other hand, don’t be a downer.
       I know, I know. It's hard to find the middle ground.  Please try. (We cancer patients are demanding, huh?)

Cancer Girl's Eighth Rule: Your Aunt Betty’s cancer is not all cancer.
      Every cancer is different. Just because I have my hair and look like the normal me, do not assume that my battle is any less difficult than your Aunt Betty's battle. If you are truly curious and want to know the history, do some research. Cancer is a weird and tricky thing. I doubt any two stories are the same.

Cancer Girl's Ninth Rule: Be useful.
         I will let Cancer Girl explain this one since I have been lucky in this category: "This does not mean calling up and saying, “I wish I could do something,” or worse, promising, “I’m going to baby-sit the kids or make you dinner” and then never doing it. This is not your big chance to feel pleased with yourself and your good, empty intentions."

Cancer Girl's Tenth Rule: And this is the most crucial – be guided by the person’s cues.
     If you ask me how my treatment is going and I quickly change the subject, please do not force me to talk about it. Sometimes I enjoy sharing my story with someone else because it allows me time to vent and educate. Other times I want to be a normal 24 year old girl, at the bar, with her friends.

Listen to Cancer Girl on this one, "Respect their limits — it’s their cancer party, and they get to call the cancer shots. You don’t have to cure anybody. You don’t have to cheerlead. You don’t have to do very much at all. Just be a friend. Just stick around. Just let them know they are not forgotten even if they’re not around as much lately. They are not scary because they look different. And that if they can handle this, you love them enough to handle this too."

Thank you, Mary Elizabeth Williams, for your brave and honest article.

I know you all will appreciate it too.

Monday, December 12, 2011

A Tan Shouldn't Define You

Sometimes I think Youtube is ridiculous. There are so many pointless videos that most of us never need to see. Then there are videos like these that are worth sharing with all of your friends and family---especially the young kids.

If we tell 10 teenagers that they could die from skin cancer, most of them would forget about us by the end of the day. If they see a beautiful young girl crying over having to tell her mom that she has melanoma, they will remember.

Share it, share it, share it.

I would much rather have a painful surgery than have to to go back in time and tell my family that I have advanced melanoma. That, my friends, was the worst.

Protect the skin you're in.

Sunday, December 11, 2011

I know, I know...I have been a slacker this past week. I have been totally consumed by Harry Potter and exhaustion. I fought a pretty rough sinus infection this week. I will get back to posting more regularly soon, I promise.

I just wanted to post a Hi, hope you are well, and a request that you would please say a prayer for a newly diagnosed warrior Andy and his wife Erin as they head into his SLN biopsy tomorrow. We all know how scary it is. Please send positive juju their way.

In case you haven't seen this video--Dear 16 Year Old Me--check it out & make sure you share it with your friends, especially younger folks. No matter how many times I watch it, it still gets to me.

Now please excuse me as I go curl up on this cold Sunday night and watch Miracle on 34th Street. It's a classic.

Monday, December 5, 2011

A Map of Me

When most people move they find letters from crappy ex-boyfriends (OK, maybe that's just me...)  pictures from when they were younger, and receipts for things they probably should not have bought. What do I find when I move the rest of my stuff into Mr. Spots' apartment?

I found a map that I had not seen since the day of my very first melanoma surgery. It's a map of me.

Malignant melanoma often spreads from the original tumor site to regional lymph nodes. Knowing that there is cancer in your lymph nodes is scary because it means that the melanoma has the ability to spread wherever its little black heart decides to go. How does one find out if there is cancer in lymph nodes? Well, that's where Sentinel Lymph Node mapping comes into play.

Lymph nodes are important because they are part of the immune system; they help fight disease. Unfortunately, sometimes cancer cells spread from the original tumor sites into regional lymph nodes. With advanced melanoma, it is important to find out if the lymph nodes have been affected by the disease. describes SLN mapping well. They say, "The first lymph nodes that the fluid from the tumor flows into are called the "sentinel lymph nodes." A sentinel is someone who stands guard. You can think of the sentinel lymph node as the gatekeeper to the rest of the lymph nodes. If the sentinel lymph node has cancer cells in it, there is a chance that the cancer has spread. If the sentinel node does not have cancer cells, the other lymph nodes in that area are probably also cancer-free, and the cancer probably has not spread."

How do you determine if there is cancer in the SLN?
Again, says, "The surgeon will inject a blue dye and a radioactive tracer around the tumor site. The lymph fluid carries the blue dye and tracer away from the tumor, to the nearest lymph nodes. The surgeon looks for the lymph node that has blue dye in it (or uses a detector to find the lymph node that has the highest amount of tracer). This is the sentinel lymph node. The surgeon removes this node and a pathologist will test it to see whether it contains cancer cells."

I vividly remember being on the table after the dye was injected into my body (this is actually quite painful) and seeing the way the two technicians changed. There was one lady, around my mom's age, and one younger guy. He was new to the hospital and it was obvious I was one of his first patients. I remember when they informed me that I was "glowing" in 4 separate areas. I asked the new guy if that meant that Dr. Pink would cut me in in all four areas. He quietly responded, "You want him to, ma'am." Well, shit.

It is weird for me to look at this sheet of pictures and know that it is actually me. I imagine most people feel that way. As you know, the results of the SLN were less than pleasant: Definitely positive for melanoma under left arm, right neck, and "possibly positive" under right arm. Ew. 

When I received these results, we immediately started looking for cancer centers who specialized in melanoma. Mom kept pushing for Memorial Sloan Kettering Cancer Center. After talking to the people in the scheduling department, and many hours of debate and frustration, I decided it was best. 

MSK determined that there was not enough melanoma in the SLN under the right arm to say for sure that it was positive. They did agree on the other two reports though. This meant I was stuck with the decision of having the full lymph node dissection or "watching and waiting." (Have I mentioned that I hate that term, by the way? Must think of a more positive way to describe the observation treatment plan!)

After meeting with Dr. Glinda, my surgeon at MSK, I decided that having the full dissections were necessary. When she admitted that she would do the same if she were in my shoes, I knew it was what I needed to do. That way it would allow us to know exactly how far this cancer had spread and it would also give me a peace of mind. 

I had the full dissections and before I even left NYC to heal, Dr. Glinda informed me that all of my lymph nodes were clear: No evidence of disease. (And yes, this news made me cry in the middle of the busy waiting room.)

People have asked me if I regret having gone through the full dissections. My answer is--and always will be--Absolutely not. Sure, I have some pretty intense nerve damage. And yes, my right neck/shoulder looks a lot different than my left side, and at times it makes me very self conscious, but because of these surgeries, I know that I am fighting melanoma just as hard as I can fight. If it spreads, I will know that I made the necessary decisions to try to prevent it from spreading. I could not sit home and night and wonder if there was more cancer in my "glowing" areas. That is just not who I am. I am a need to know girl. Some would argue--including my first oncologist--that the full dissections were unnecessary, but I would bet money that he would change his mind if he was the one with cancer...I rest easy at night because I know that I am taking all of the necessary steps to fight this thing called Melanoma.

Oh, the memories...