Thursday, March 31, 2011

Melanoma and Relationships

There should be a self-help book based on how to deal with your significant other after she has been diagnosed with cancer. It should begin with "Pay little attention to the major mood swings...They, too, will pass."

I have blogged about Mr. Spots quite a bit in the past. It is always a hard decision for me about what I should write and what I shouldn't; however, I said I was going to be honest and I am sticking to that. Anyone who has faced a difficult road in life knows that we all handle things differently. Some of us face things head on, others do whatever that can be done to ignore the less than pleasant experiences life throws at us. I am the type of person that is sometimes so independent it comes across as being stubborn, and then there are other times when I am a scared little girl. If I am going to "break down" and cry, Mr. Spots has been my go-to guy. I turn to him with every positive update, every scary statistic, every ounce of hope, and unfortunately...every bit of anger.

Case in point--this most recent surgery.

I was scared out of my mind about this latest surgery. I had no idea what to expect, what the outcome would be, what side effects I would be stuck with, etc. Honestly, I was a little ticked off that he was not around to experience all of it with me. In my very selfish brain, I thought that as my "partner" he should have been by my side during the scariest day of my life. I could not get past the resentment I felt towards him for being elsewhere. I mean, there I was, taking drastic steps for HOPE that I can beat this thing, and he was home living his "normal" life.

Now that I am more calm, have good news, and regaining the ability to use my arms, I realize that I was being a bit selfish. He has a little boy, family, and school. He can't drop everything every single time I have a cancer scare. I can't say it does not sting a little, but one thing this whole experience has taught me is that I have to pick my battles carefully. He has been a blessing to outlet when I am too scared to tell anyone else the horrible thoughts I am having, my partner in crime when I want to have some fun, my ball of energy when I can hardly stand to get out of bed, and my boyfriend.....Regardless of the cancer craziness, Mr. Spots continues to remind me he loves me, reminds me that I am beautiful---scary scars and all---and he loves me...really loves me.

I have to remember to give the guy a break sometimes...just like he has to remember my mood swings are sometimes earned...and that despite my tough girl act, I need him.

That is why I am thankful he is on his way to see me today. We have some apologizing and celebrating to do.

Give and take. That's how relationships survive, right?

Wednesday, March 30, 2011

My First Hospital Stay...

...told in mainly picture form. Sorry, I am exhausted!

Wearing my stylish hospital gear
before heading into surgery.
Mom captured the moment...
and my absolute joy.

I woke up in the recovery room around 8 PM with extreme nausea.
Luckily for you, there are no pictures.
 I was able to see my family for about ten minutes...Long enough to start crying!
I remember looking at Mom, "I'm going to cry."
And sure enough, I did.

They kept me on oxygen
until about 10:00 PM and finally took me to my room thirty minutes later.
I remember trying to watch Grey's Anatomy with my nurse Pam
but I could not stay awake.
I made out pretty well the night of surgery. I had an amazing, young nurse Audrey
who took special care of me.

Day Two:

I had good drugs in my system...
Without the drugs,
I was close to miserable.

I did have pretty presents to help make my room more comfy...

from The Sharpley's!

"Hope you are back in heels soon!"
Thanks, Brie!

Ashley claims it is only appropriate
to send me flowers in a margarita glass...
Too bad there was no tequila!

From my baby sister...perfect.

From a special sorority sister...
Curious George is totally my secret man.
Look at that face!

*I received other special gifts from another sorority sister, a teddy bear
that kept me company from my Dad & Step Mom, scarves and chocolate
from my special fellow melanoma warrior, and I arrived
home to numerous cards from you all.
THANK YOU. I wish I could post pictures of everything.

Back to the medical stuff...

Here is the left arm incision after my full lymph node dissection.

The two drains coming from my left arm...
Most painful part of the first few days!

Neck drain and incision.
I have not seen the actual incision yet...
It has to remained covered for another week.

The lovely case my drains went into..I had two and they clunk together
as I walked.
I am telling ya...I was a pretty picture!

My breathing toy...Supposed to blow into it ten times every hour.
It has been quite difficult for me.

I was in the hospital for 4 nights.
My discharge process began at 6:15 Monday morning;
however, I did not actually leave until 10:00.
The last night in the hospital was the worst.
I was extremely ill. Luckily Audrey was working again
and she, once again, took special care of me.

Release from "jail"

My aide Rachel said, "My friend is leaving today! Now I don't want to see you back here."
I told Rachel I hope to see her again...but not at Sloan Kettering Cancer Center.

Now I am back in Virginia, tucked into bed, sore as sore can be...
Like the last time I had surgery, I have developed an allergic reaction.

Notice my incision, my two bullet holes from the drains, and my rash.

Maybe you will stop going to the tanning bed now?

The end of my hospital visit brought me amazing, unexpected news...


Now...I need to go rest. The horrible New Jersey roads took a lot out of me today.
I feel beat!

XO, friends.

The healing begins now.

A Peace of Mind

One week ago I left Virginia filled with anxiety for the surgery, fear for the pain and the pathology report, and clinging to hope that things were going to turn around for me.

Now, one week later, I leave New York with 5 new scars, little strength in my arms, but I am leaving with a peace of mind that to our knowledge--and we took extreme steps to find out--there is no melanoma in my body.

I will never forget Dr. Glinda walking into Suite 7 at the hospital with a stack of papers. My appointment was to remove the drains; however, I had the slight suspicion when her office called to ask me to come in that the pathology report had returned. "It is not finalized yet, it is fresh off the press, but everything was clear." "Yeah, I had to read it twice before I believed it, too."

I do not mean to sound like a debbie downer, but I did believe at least a few nodes would come back positive. Look at my track history...Do you blame me for assuming that? I have a feeling that even though Dr. Glinda told me she did not see anything suspicious, she was still as shocked as I was to have the "all clear" report.

She said to me, "You know your other oncologist told you not to do this surgery...and all of your nodes came back negative..."

I interrupted, "But I have a peace of mind."


I thank Dr. Glinda for that. When I first met with her, she did not pressure me one way or another. She gave me my options, she listed the risks, but she understood that at 23 my life was in shambles. Melanoma completely consumes me. To have a peace of mind, well...there is no price for that.

Dr. Glinda complimented me on the way that I have handled this. She said I have handled it with grace and poise. That means a lot to me. At times I know some of my questions were probably ridiculous, but I have to know everything I can about this unpredictable disease. Being the kind, amazing doctor that she is, Dr. Glinda hugged me as we were leaving. It was not that fake, "you did good" hug. It was the "Thank God this was the outcome."

Like I have said before, I feel very thankful to have her on my side.

The realization of the "all clear" report did not start to hit me until I called Mr. Spots in the lobby of the hospital. It started to feel real. Then when I got in touch with my Dad a few minutes later, I completely fell apart. "Daddy, all of my nodes were clear." He hesitated. "What?" "All of my nodes came back clear." He screamed, "Already? ALL of your nodes were clear? Praise God."  And the tears started... on both ends.

So, here we are, one week later, and I am packing up my stuff to head back to truly heal in Virginia with the peace of mind I have been praying for since January. I know that I have a long fight ahead of me, serious decisions to make, but right now, in this very moment, I am going to enjoy the relief.

Going back to my obsession with The Wizard of Oz, there is no place like home.

Tuesday, March 29, 2011

Another Chance at Life

I  can hardly stop shaking enough
to write this post.
I do not know how to start it, so I am just going to blurt it out.

Dr. Charlotte Ariyan, AKA Dr. Glinda the Good Witch--
for her beautiful smile, her curly blonde hair,
and because she is my protector against my enemy melanoma-
 gave me the best news of my life today.

ALL of my lymph nodes that were removed
on Thursday
came back NEGATIVE for melanoma.

Yes, you read it right:

Thank you God.
Thank you to my amazing, AMAZING doctors.
Thank you to my could-not-live-without family.
Thank you to my friends...close and far.

I have a lifetime of fighting ahead of me,
I will always have Stage III Melanoma,
but right now...
I have No Evidence of Disease. the best day of my life.

*I will post more when I can think clearly. As you can imagine, I am in shock.

Monday, March 28, 2011

Making A Difference

Today a stranger quit her job at a tanning salon
and quit tanning after hearing my story.

I was doing my job of doing nothing but resting when my sister sent me a text message today.
"My friend at work quit working at a tanning salon and tanning because of you."

I have never met this girl...she only knows me from Cara, --and I know this is going to sound dramatic--but my story could have saved her life today. At the very least, it will keep her wrinkle free for longer. ;-)

I have often wondered what the "meaning" behind all of this cancer craziness, but today I feel like it is worth something...I am making a difference.

And I am pretty darn proud of myself.

Freedom, Freedom, Freeeeeedom!

I got released from the hospital a few hours ago! I will post a full update later but I am back in the hotel, minus one drain, all clean--thanks to Mom and some creative maneuvering--and in fresh PJ's. I still have the stylish drain in my left arm but the right one was removed this morning.

As you can see, there is no hiding this baby! It makes dressing very difficult.

Oh, and you should have seen the looks I received from the New York City folks. I am sure I was a pretty picture...standing on the sidewalk, numerous flower arrangements, a Vera Bradley bag, two teddy bears, and a pillow. Oh..and my bloody drain that was visible even though I had a jacket over me.

Nothing like making a scene! ;-)

Nap time!!

Dear nurses,

Please do not wear perfume or strong smelly stuff while you are seeing patients.


Your super nauseous patient.

Saturday, March 26, 2011

I am baaaaaaaaack!

Hi everyone! I wanted to personally write a little update to let everyone know how I am. (please forgive me for the mistakes...I will blame it on autocorrect and the pain medicine!)

My surgery was on Thursday, March 24th. I arrived at the hospital at noon and they wasted no time getting me changed and prepped. That took all of twenty minutes so then we were forced to wait...and wait...and wait. Luckily they let my family stay with me so it was Mom, my Step Dad, my Step Mom, Dad, and Cara in the holding cell. By this time I was starving and thirsty so the main conversation was about food. Of course.

As I keep mentioning the staff at Memorial Sloan Kettering is outstanding. They are all so friendly, but not in that fake way...As the aide was helping me prepare for surgery, she said a quick prayer that this will be my last surgery. Amen!

The surgery itself was more successful than I could have hoped. Both Dr. Glinda and Dr. Adorable were able to preserve the nerves that allow me to lift my arms, etc. I am extremely grateful for them. They are both so excellent in terms of their knowledge and their ability to bond with their patients. Their staff checks on me throughout the day, the doctors come by to chat, I never feel neglected.

As I was waking up in the recovery room, Dr. Adorable came by, held my hand, and said I was fantastic and he is so relieved we did the operation.

Dr. Glinda has been just as great. She came by this afternoon and ended up sitting on the bed chatting with me, helping me milk my drains (sounds dirty) and simply talking with me for a good 15 minutes. She shared her complete joy about Ipi being FDA approved yesterday. I believe she had tears in her eyes while discussing the drug. The approval of that is major! No drug has been approved for treatment of melanoma in YEARS. This could be the drug that allows my fellow warriors to live many more years. To see Dr. Glinda so visibly touched by this made me very relieved I have her on my side.

Tonight I am in the hospital room alone. My roommate, a very quiet older woman, was discharged this evening. Although she could not speak English, she stopped by to have my Step Father tell me she wishes me luck. I wish the best to her. She was the best roommate I could have had.

One thing I have learned about hospitals is that there is no time for modesty. Dr. Glinda's staff came in this morning to remove the bandage under my arm. I barely had enough time to stand before it was snap, snap, snap! I was suddenly exposed from the shoulders down. Trying to distract myself from the two very handsome doctors, I started to discuss my "jersey shore spray tan." Whatever they used the prep my body from surgery is intense! Of course the topic only made them pay more attention to my very naked skin but whatever... Life would be boring without awkward moments!!

I want to thank everyone for all of the support! I never feel alone with all of you in my corner.

Now... It is time for me to get some beauty sleep. Did I mention my night nurse looks like Avery from Grey's Anatomy? Oh la la!

Friday, March 25, 2011

A Lifetime of Friendship

"A real friend is one who walks in when the rest of the world walks out." ~unknown

For me, Chelsea has always been this person. While she is recooperating, I'm going to be selfish and take this time to tell you all about what a truly great friend she is. Some of you know Chelsea personally. Some readers are family, some are close friends, some are acquaintances. No matter who you are, we are all now a part of Team Chelsea. However, I just want to take a few lines to describe Chelsea the Person, not just Chelsea the Cancer Patient.

Here is a part of our story:

I met Chelsea in the fourth grade and what I didn't know what that she was going to be my own personal earth angel. A few weeks after the school year started, my dad died from a sudden, massive heart attack, which obviously shattered my 9 year old world. Chelsea, who was already wise beyond her years, comforted me during my grief and during the years to come. She would check on me on Father's Day and the anniversary of my dad's death, which were always hard days for me. As time went on, we learned that we really were best friends. Through the years, we have grown up together and experienced many of life's experiences and challenges together. We have learned how to have a difference of opinion without hurting our friendship, which is an important lesson for anyone to learn. No matter what else is going on in our separate lives, or how far apart we live, we are always there for each other when it matters most.

While Chelsea and I are incredibly close, I feel that credit is also due to the rest of her awesome support team. There are no words to describe how much her family loves her. They are truly amazing people and I am proud to know them. I recently met Mr. Spots and I must say, his sense of humor is going to be nothing but an asset to her recovery because he is a funny guy! Then there is the group of girls who love and adore Chelsea. I have seen girls stab each other in the back at the drop of a hat, but I must say that Chelsea has one of the best support systems I know. It comforts me to know that there is always someone around who genuinely cares.

After a long talk with Chelsea tonight, I felt like it was necessary to add this very "sappy" post to the blog because I am truly grateful for her friendship, especially after recent developments.

Here's my message to you: If you have one genuinely good friend, hold on tightly to that person. These special people are once-in-a-lifetime friends who are irreplaceable.

Show You Care. Be Aware.

Like this page on Facebook for Melanoma Awareness.

Melanoma's New Face

Dear Melanoma,

When you entered Chelsea's body, I bet you didn't think that you were in for the fight of YOUR life. I bet that you wish that you hadn't messed with THIS girl now, huh?

Just look at this Warrior. Not even 24 hours post surgery, here she is, showing you and the world that YOU are not going to beat HER.
Well, Melanoma, looks like the joke's on you....

Even though the first half of this post is meant to be light hearted and humorous, let's not forget the gravity of this situation. Please note that in this picture, Chelsea is raising her left arm, which is huge news because the surgeons were able to preserve the nerves that allow her to raise her arms. She may not recover full feeling in the right side of her neck, but she will be able to lift her arm above her head in a few weeks, which is great news because there was a chance pre-surgery that this would not happen.
As we all surround Chelsea with our positive thoughts, prayers, and love, let's remember what's at the center of this situation. Chelsea has Stage III Melanoma. This is serious! If you want to find a tangible way to help her, here is the solution.
Another one of Chelsea's amazing best friends, Rayna, designed a Melanoma Awareness T-shirt for two reasons. First of all, Chelsea's goal (after beating this monster) is to educate people about the dangers of Melanoma. (REMEMBER - it is not "just" skin cancer!!!!) Secondly, having cancer is expensive. If you've been following this blog, you know about Chelsea's battles with "And.Them." While she is not a person to ask for help, if you are able to purchase one of these T-Shirts, here is more information about how to order one:
I can't say it enough - thank you to EVERYONE who is backing this amazing Melanoma Warrior.

This Girl is an ALL STAR!

This afternoon, I got a text message from Chelsea. As I opened the message, I see that it is actually a picture message. When the picture opens, I see Chelsea standing up, in all of her JP drain glory, waving at the camera.

Looking at this picture, I actually want to giggle.

If you are Facebook friends with Chelsea, you have more than likely seen this picture. If not, I will allow her to decide if she wants to upload it here.

The caption under the picture? "I know, I know. I'm gorgeous. Please be jealous of my drains."

It's this positive attitude that is going to bring her through recovery.

In other good news, Dr. Glenda and the other surgeon (I believe Chelsea is calling him Dr. Adorable) both noted that they saw nothing suspicious during surgery yesterday. The pathologists will need to confirm that there is no more cancer in her body, but I can't help but have a good feeling!

Right now, Chelsea thinks that she may be released from the hospital on Sunday and will have to remain in New York for a few more days before returning to Virginia.

It seems that all of the prayers, good thoughts and ju ju are working! I hope that these brief updates are enough - Chelsea will be able to tell you all more once she is back in business.

Now, all I can say is this:

1) Thank you, thank you, THANK YOU to everyone who has stood behind her during this journey. I know that your love and support is a major comfort to her.

2) If I ever have the bad misfortune of having cancer, I hope that I can "keep on keeping on" with an attitude like Chelsea's. She truly is an inspiration to us all!

Thursday, March 24, 2011

Surgery Update

It's official:
Chelsea is out of surgery and doing well so far.
Positive thoughts and prayers are always appreciated. :)

The Cancer Network

** This post is not written by the original author of this blog, Melanoma Warrior, Chelsea. I am Erika and Chelsea has been my best friend for the past 14 years. While Chelsea is triumphantly fighting this cancer, with her permission, I will give you a different perspective on the "C" word.

If you have been following this blog, you will know that Chelsea is currently at Memorial Sloan Kettering in New York City enduring major surgery to fight this mammoth melanoma.

To be perfectly honest, I have been in a funk all day because Chelsea's surgery. She is several states away, battling cancer, and frankly, I've been worried about her. To preface this entry, the last two sentences are not meant to be a pity party for me. They simply are meant to create a framework for the following story.

After staying in the previously mentioned "funk" all day, I decided to leave work today as soon as I could. I was ready for some peace and quiet after a long day. On my way out, a co-worker, who has been following this blog, stopped me to ask how Chelsea is doing. This co-worker's husband conquered cancer within the last year, which is the kind of news that was great to be reminded of at this point in time. While talking to this co-worker about Chelsea's fight, another co-worker overheard our conversation and asked to speak with me. While speaking with co-worker #2, she told me that 2 of her closest friends are cancer survivors. During their battles, both of these people surrounded themselves with people who were positive. One cancer survivor, when asked for her plans for the next day, simply replied "I'm going to laugh tomorrow." What a great attitude to have! Anyway, my point here is that within 30 minutes, 2 people stopped me to ask about Chelsea and to remind me of the power of positive thinking.

As I drove home this afternoon, I thought about both of these conversations and realized that there must be a reason that 2 people shared 3 survivor stories with me WHILE CHELSEA IS IN SURGERY! To me, that is a sign that Chelsea is going to beat this monster.

As I wait for updates on Chelsea's surgery, here are the 2 things that I am keeping in the back of my mind:

1) God is infinitely more powerful than this cancer.
2. "Cancer is a word - not a sentence."

Now, as you read this, I beg you to say a prayer for Chelsea. Think good thoughts for her and about her. In the coming weeks, keep encouraging her. We will all be her cheerleaders and she WILL soon be able to call herself a Melanoma Survivor.

The Morning Of...

I have made a decision.

I am going to go into surgery with positive thoughts,
a smile on my face,
 and the determination to be the best little melanoma patient
Memorial Sloan Kettering has ever seen!

However, in honor of the pain I am going to put myself through today (guilt trip begins now!) I hope you take the time to warn someone about the dangers of melanoma. Become friends with a dermatologist. Stay out of the tanning bed. (Hello, spray tan!) Use sunscreen daily...not only on yourself but your kids, your husband, your parents. 

Be smart.

Wednesday, March 23, 2011

My Own Personal Cheerleaders

During one of my earlier posts I discussed the reactions of people when they find out I have cancer. I mentioned how I knew the outpour of support would end after the "thrill" of the new gossip faded, and I would really find out who my friends are.

My goodness...I had absolutely no idea how many friends I have.

The continued phone calls, messages, cards, gifts, facebook comments...I can hardly keep up! No matter how grumpy I am, no matter how depressing my posts are, no matter if it is obvious I am going to live the day in denial, I continue to get support from you all.

It holds me together.

Thank you.

I Don't Wanna...

I have decided I
do NOT want to do this tomorrow.

I am tired of being in pain. I am tired of the scars. I am tired of doctors, and needles, and blood pressure cuffs. But, I know this surgery is the best thing for me.

Someone asked me tonight exactly what this surgery is for so I figured I would do a quick explanation. During my last surgery, Dr. Pink removed lymphnodes in 4 areas--both armpits, both sides of my neck. Out of all four areas, he only removed 9 nodes. It has been confirmed twice that the nodes in my left armpit and the right side of my neck were positive for melanoma.

Standard procedure is to go back into those positive areas and remove the rest of the lymphnodes. There is no way of knowing how many nodes will be removed...could be ten, could be twenty in each area. A pathologist will then study each and every node to find out if there is more cancer in those affected areas. 

There may be more cancer. There may not be any more cancer.

Either way, I will find out for sure... No more guessing!

This surgery will require quite a few new incisions, plus two fashionable drains, nerves will be cut, fat will be removed, and it will leave me with little ability to lift my arms, etc. Physical therapy may be needed.

However, it will give me a peace of mind. If there is more cancer in my body, I want it out of me.

Let's say the nodes are negative. What happens? Possibly nothing. We will continue to have scans every 3 months, remain best friends with my doctors, and hope that we never have an issue again.

If the node are positive? That is OK, too. Of course I hope for a negative report; however, I will not lose hope if it comes back with a few positive nodes. If this is the case, I will be eligible for Ipi. If you have been doing your research on melanoma, you will know that this drug will hopefully be FDA approved very soon.

Confession time: I am terrified.

I guess because I had no idea the amount of pain I would feel after the last surgery, I was no where near this nervous. This time I am scared about how this surgery will leave me. I am thankful I am spending a few days in the hospital because the nurses can monitor my pain, medicines, and teach me how to care for the drains.

Remember how I had hoped for a private room? Wellllllllllllllllllllll....that is an additional $500 per day.

Guess who will have a roommate?

I am scheduled to arrive at the main hospital at noon tomorrow. My surgery is scheduled to begin at 2 PM. I should be in my hospital room around 8 PM...just in time to tell my family goodnight.

A part of me is thankful I will not be getting to my room until late. Maybe that way I will actually sleep through the night? Wishful thinking? Probably.

I am going to try to get my last night of comfortable sleeping...As you go to bed tonight, please pray for my friend Christina. She is going for her 3 month scan tomorrow. We are all hoping, praying, wishing that all is clear. She is, yet another, young beautiful mother...fighting against melanoma.

Girls, as I keep saying, that "gorgeous tan" is so not worth it.

One More Prayer...

I know, I know. For someone who claims she is not overly religious, here I am posting something else. I guess I should say I do not follow religion like most people follow religion. I have never said I do not believe.

ANYWAY---my friend Anne, a beautiful mother of 2, also a Melanoma Warrior, sent me this today. It brought me a lot of comfort on this very nerve wrecking day before the most intense surgery of my life thus far.

Dear Lord,
I lift up Chelsea to you as she prepares for surgery
and Lord trust that you will carry her through this time.  Lord I pray
that she will sense Your presence with her every step of the way.
Cover her in perfect peace that comes from you Alone, calm her nerves
and replace her anxiety with hope and trust in your plan and will for
her life.  I ask that you will guide the doctors and nurses that are
caring for her and give them wisdom in the decisions they make. Lord
we ask that her lymphnodes be free of melanoma and that her recovery be swift and complete.
We ask that you would extend Your grace over her body and heal it with your touch.
Give Chelsea's Mom strength, encouraging words, and a calm heart to help
support Chelsea tomorrow and the days that follow.  Thank you Lord for walking with
us every step of the way and that we never have to go through anything alone. Go
before Chelsea tomorrow and create a path of peace, be there with her and
draw her close to you during and after the surgery, follow behind her
and protect her healing process. Thank you in advance Lord for
showering her and her family with love, mercy and peace. Amen

Anne, thank you. It brought me the peace I needed earlier today.

*Just Say a Little Prayer...*

As I have mentioned before I have never been an overly religious person. However, I am learning things about myself and what I believe in...

Nothing like a crisis to teach you a few lessons, right?

My friend posted this prayer on a website and I wanted to share it with others before heading to New York today to face my next adventure: the surgery.

A Prayer to St. Peregrine for One Suffering from Cancer

Dear St. Peregrine, I need your help. I feel so uncertain of my life right now.
This serious illness makes me long for a sign of God's love.
Help me to imitate your enduring faith when you faced the ugliness of cancer and surgery.
Allow me to trust the Lord the way you did in this moment of distress.

I want to be cured, but right now I ask God for the strength to bear the cross in my life.
I seek the power to proclaim God's presence in my life despite the hardship,
anguish and fear I now experience.

O Glorious St. Peregrine, be an inspiration to me and petitioner of those needed
graces from our loving Father. Amen.

*Thanks to Melanoma & the City for sharing this. 

Tuesday, March 22, 2011


Today as I was reading a message from a stranger I remembered something that happened to me.

There I was, a middle school (possibly high school) student, standing in line at a Hardee's in Salisbury, MD with my Grand Mom, when this stranger walks up to me.

She touches my left shoulder.

"You really need to go have a dermatologist look at that."

I can not remember what else she said to me that day, but I remember feeling offended. Who was this woman? Why did she feel the right to walk up to a stranger, a young girl, and tell her she needed to have a mole examined?

I ignored her. Really, who was she to warn me?

Maybe she was a mother to a young girl fighting for her life thanks to skin cancer, maybe she was a Melanoma Warrior herself, or maybe she was a dermatologist determined to share her knowledge with anyone in her path.

Whoever she was, she was right. I should have had that mole examined...It turned out to be the one that tested positive for melanoma.

It has probably been ten years ago, but here I am...fighting. 

I could beat myself up. I could question why I tanned before proms, weddings, vacations. I could ask myself why I laughed it off when my older sister warned me against the dangers of melanoma.

Where would that get me?

I would only feel guilt that I can do absolutely nothing about now.

Instead I can be like that woman. I can throw melanoma into the faces of everyone I know. I can use the internet to promote awareness. I can leave dirty comments on status updates about tanning (Teasing...unless you find me on a really bad day!) If people hate me for sharing the truth with them, well, they can delete me from their life.

I will face my fears of my surgery by knowing that I am doing the right thing...I will have the "beauty marks" that will always remind me of my battle, but I will also have the knowledge that I am doing everything in my power to beat this beast.

And...I will have scarves until I feel confident enough to show the world exactly what I am going through.

Monday, March 21, 2011

The Week of Reality

Holy cow, I have been a busy girl, living it up while I can. My baby sister came home this weekend and we wasted no time catching up on the last month. We went out on the "town" Saturday night and had some interesting experiences...

I realize I have been the latest gossip in the last few months; however, as I have mentioned before, I am not a circus freak. When I am at a restaurant please do not stare at me from the moment I walk in until I peel my last shrimp. It is not only socially unacceptable, but it is downright RUDE. When you turn around in your chair--not once but numerous times--please realize I know you are staring at me.

Maybe next time I should wave...

Later on that same evening, people treated me the way I appreciate being treated. The guys walked up to me at separate times, gave me a hug, asked if I am OK, and changed the subject...In other words, they treated me like the normal person that I am.

The thing about melanoma that I think people find shocking is that minus my scars, I do not look different. I guess I do not fit their idea of a "cancer patient." One of my fellow melanoma warriors suggested making tee-shirts that state, "This is the face of melanoma." I am sure it would catch some people off guard...We are not all obsessive tanners, we are not all 60 years old, and we definitely are not all males. Woo hoo for beating stereotypes!

Today was such a great day. My sister and I joined Mom for lunch, not realizing that she had special guests waiting for us...Gran and Pop! I had not expected to see them until after I came back from New York so it was an exciting surprise. We had a very lovely day together. Lots of quality time!

On Facebook I asked the question of what to pack during my upcoming hospital visit. Here is the list of suggestions so far:

1) My own pillow
2) the necessities...toothbrush, etc. I probably won't be needing shampoo, etc, since I will not be allowed to shower. (Gross, I know. However, I highly doubt that will be on my list of priorities. Sorry if I smell!)
3) Slippers
4) PJ bottoms (I will have to keep the hospital gown on because of the drains.)
5) Ear buds to drown out the family when I need a break. ;-)
6) iPad to update you fabulous people (Ignore any ridiculous posts. I will swear it was the morphine!)
7) a robe
8) and of course my cell phone!

I have received a lot of good advice from other Warriors, too. I never thought about reminding the nurses not to use the blood pressure cuff on my arm after the surgery. Apparently since I will not have lymph nodes in the left arm, it is not wise! I had no idea I would wake up to my own special compression bra, so I am glad Melanoma & the City warned me...That could have been a huge shock! Everyone keeps suggesting I insist on someone not drugged up to stay near me at all times so that they absorb the information and make the decisions. Hopefully I will have a private room and this will not be an issue. Plus it would help with my irrational fear of hospitals...

I am praying, hoping, and wishing for a drama free surgery and hospital visit!

...I still can not help wishing none of this was happening.

But I will get through it.

I will tough it out.

And...I will sit back & let the morphine do its job.

Sunday, March 20, 2011

"And.Them" and Good News...

in the same sentence? Shocking.

I was going through my mail today when I came across my Explanation of Benefits that had piled up since I have been at my Mom's.

They have FINALLY started paying for some of my claims!

Oddly enough the only claims they are denying right now are the original office visits at the dermatologist, the original removal of the mole, and the actual surgery...All of those are still being denied for a pre-existing condition.

Yes, I  don't understand it either.

However...they saved me about $60,000 so I am thankful they are finally doing what we pay them to do!


(Man, I really hope I do not regret posting something positive about them....)

Saturday, March 19, 2011

I Can't Save The World...

The other day I read a facebook status about the dangers of tanning. Someone commented that she was not going to worry about the dangers...that she wanted to look hot while she can.

Now I know  I can not save the world.

I realize there are going to be some people who hear my story, roll their eyes, and just *know* this can never happen to them. But I can't help but feel anger towards this stranger and her ignorance. I know I should not judge her, she doesn't know me, I am just someone who read a pretty stupid comment she left on someone elses facebook.

(Yes, I am taking facebook too seriously right now...But it is evidence how little people think about the seriousness of tanning.)

Here is my question---if you have to be 18 to work on giving yourself lung cancer, why can you tan at 15?


Enough Cancer talk. I need to get out of the house today and clear my head.

Happy Saturday. XO

Thursday, March 17, 2011

Oh, "And.Them."

Me: "So, should I continue with the treatment
you are going to deny?."

"And.Them" Customer Service: "I am sorry."

Me: "How do you people sleep at night?"

And.Them.: "I don't make the decisions, ma'am."

Okay, I let And.Them get the best of me today. I normally stay calm and collected; however, there reaches a point where enough is enough.

My point came today.

I called "And.Them" to check the status on my claims since I am on the Shore with my family instead of in Roanoke. The first person I talked to tried to tell me that she did not have access to any of my medical records. After nearly pulling my hair out with her inability to answer any questions, I questioned how they run a business where no one operates on the same system. Frustrated, I asked to be transferred.

Once transferred, I was required to give all of my information again. This woman claimed she did not have my mailing address on file. "That's pretty ironic since you send me mail."

I ask to be transferred again.

I reach this woman who tells me that my surgery was approved but since I have a pre-existing clause on my policy, the surgery has been denied. I explain to her that I understand I have a pre-existing clause...Someone told me that back in December. Following their guidelines I have had my doctors provide them with my medical information which bluntly states that my cancer was not known prior to January 2011. I explained that I have played by the rules and continue to get the run around...

"Ma'am I do not see how we are giving you the run around."

So, I lost it.

I (loudly) explained to her that I have filed paper appeals, I have had my doctors send in my medical reports, I have pre-authorized procedures that actually are not required to be pre-authorized, and I have dealt with this since December and continue to hear a different answer every time I call.

I know she is limited in what she can tell me, I know she has a greedy boss who would fire her if she showed any sympathy, but my god...I already have cancer. Do I really need the extra stress of being hassled by my insurance company?

After the third time I requested to speak to her supervisor, she transferred me.

I received a voice mail.

Assuming I would never hear from the supervisor, I called the woman who originally approved my surgery.


About 2 hours later my phone rings...It is the supervisor.


Obvious that she is calling to smooth my feathers, she shows a great deal of sympathy. She reviewed my information, and I quote, "You were diagnosed after your coverage began. This is not a pre-existing condition."


She was actually very nice, very sympathetic. I made sure to let her know that the lack of organization does nothing to prove what a "great" company And.Them is. I mean, not even having my mailing address on file? Is that really how they are going to try to get me off the phone?

Nice try.

Don't screw around with a pissed off woman...Haven't people learned that by now?

She is supposed to be calling me back tomorrow. She said some claims are showing as being approved even though I have received letters saying they are denied. Again---lack of organization..........

I honestly do not know why they aren't sued often. Or maybe they are. I now understand why.

Did You Know?

Some melanoma facts...

One in five Americans will develop skin cancer in the course of a lifetime.

Melanoma is the most common form of cancer for young adults 25-29 years old and the second most common form of cancer for young people 15-29 years old.15The vast majority of mutations found in melanoma are caused by ultraviolet radiation

Women aged 39 and under have a higher probability of developing melanoma than any other cancer except breast cancer.2Indoor ultraviolet (UV) tanners are 74 percent more likely to develop melanoma than those who have never tanned indoors.

Daily sunscreen use cuts melanoma risk in half, studies show.

Cost of treating newly diagnosed skin cancer is 1 billion dollars annually.

the emotional and physical costs are incalculable

Melanoma/skin cancer is the most underfunded of all cancers by federal and private agencies.

Avoid tanning salons: 15 minutes is equal to a whole day’s exposure at the beach

It sucks.


More facts


A Week From Today...

It is hard for me to imagine the pain I will
be going through a week from today.
How do I know it is going to be more painful
than my previous surgery?

Well, Dr. Adorable told me so.

While discussing the upcoming surgery, I told Dr. Adorable that I still have a lot of numb/tingling/soreness in my chest and arms.

His immediate response?

"Yeah...about is going to be a lot worse."

I laughed because his response was just so...perfect. No sugar coating!

He did inform me that I am "lucky" in the sense that I am already numb so it will not be as big of a shock as it would be to a patient experiencing no pain or numbness.

I am becoming a little anxious about the surgery. I know this will be the most intense thing I have ever put my body through--the pain, the drains, the risks.

However, it WILL bring me answers and a sense of peace.

...and a lot of new scars.

But I am nervous...nervous about silly things:

I have never had to stay in the hospital at night...

Will Mom be able to stay with me? (Because, even at 23, I want my Momma...or at least some family member to make sure no one "off's" me! ;-))

Will I ever be able to tolerate someone touching the back of my arms?

Will I get the private room I requested or will I have an annoying roommate who makes me bat sh** crazy?

Will my voice be affected? (highly unlikely, according to Dr. Adorable.)

Will I ever feel confident enough to go outside without a scarf?

What will I eat? Will I REALLY be forced to eat hospital food? scares me. As Mr. Spots likes to say, I am a "purist" when it comes to food...and no funky textures, please.

And the drains...let's not get started on the drains again.

A part of me wishes I could fast forward this next week. The sooner the surgery gets here, the sooner I can start healing.

Just gotta keep on keeping on...

Wednesday, March 16, 2011

What Makes Me Happy?

When people send me messages
and emails
telling me they will no longer

When people tell me that
they have made their first appointment
with a dermatologist...

When people remind me
that if nothing else happens from this
horrible experience,
at least I have saved someone else...

That makes me happy.

What Is a "JP" Drain?

Sometimes my curiousity gets the best of me...

Determined to find out as much information as  I can prior to my surgery, I decided to google information about the drains I will have coming out of me following my surgery. They are called Jackson Pratt drain's, AKA "JP Drains."

*Word of advice--don't go to google images for pictures of the drains. I scared myself...which is why I am showing you this friendly picture instead of the gory ones!*

What is a JP drain and why do I need them?

Since we are removing all of the lymph nodes in the left armpit and right neck, my body needs time to realize that it does not need to send fluid to those areas anymore. Because that realization will take time, the surgeons will insert a JP Drain to both areas so that there is no build up of fluid which could lead to infection.

The drain is a small rubber tube that is inserted into your body through a small incision and is connected to something that resembles, to me, a mini grenade. Or as the professional folks like to call it--a bulb.

How does it work?

"The JP drain removes fluids by creating suction (pulling) in the tube. To produce suction, the bulb is pressed flat and is connected to the tube sticking out of your body. Suction is created as the bulb sucks in air from the tube going into your body. This pulls fluid out from the area where the drain was placed and into the rubber tubing. The fluid then travels through the tubing and into the bulb of the JP drain. As the JP drain bulb fills with fluid, it goes back to its round shape." (JP drains)

The drains must be emptied twice a day and measured. The measurements will allow the doctors to decide when it is time to remove the drains. There is a whole science to cleaning/emptying the drains. I am going to live in denial about the drains until the nurses show me how to use them. The pictures scared me enough.

Luckily the neck drain should be removed prior to me leaving the hospital. I get to keep the arm one for about 2-3 weeks. Sloan Kettering will arrange for a visiting nurse to come help me care for the drains when I get back to Virginia.

If you know me, you know I have a weak stomach when it comes to medical stuff for myself or those I care about. Give me a stranger and I am fine...Show me my own blood and it grosses me out...

So, which one of my fabulous friends will come help with the drains?! ;-)

Save yourself this trouble, especially you ladies posting about your exciting new tans, practice safe sun...If it can happen to me at 23, don't assume it can't happen to you years down the road...

Tuesday, March 15, 2011

A Day in the life of a lab rat..

is exhausting.

After not sleeping well Sunday night, I woke up at the early hour of 7:30 to prepare for my day. I knew that I had 4 separate appointments, in the matter of 6 hours, in 3 different locations around the City.

Mom and I headed over to the Outpatient Center for my first appointment at 9:00. It was my pre-surgery testing. As I sat there waiting to be called I could only think one thing---I am too young to be here.

Then I get called back to begin my testing. I am surrounded by the Jersey Shore want-to-be cast. These girls are tan...TAN...and obnoxious. I considered pulling my hair out... Or attempting to jump out the 7th floor window. Instead I decided to cover my ears and hope the appointment would fly by...Just my luck, the want-to-be-Snookie's let me wait an additional fifteen minutes so they could continue  discussing Jersey Shore. Let me tell you...I had a headache by the time I left. (I would typically not judge; however, it was a tad bit ridiculous.)

The testing itself was OK. My EKG was perfect, blood pressure was fine, blood work easy. The nurse practitioner did not know a lot of the answers to the questions I had so that was pretty frustrating. I think she still had her mind on Jersey Shore...

Testing finished, I headed on over to the radiology building. More radiation, woo hoo! Dr. Glenda wanted to determine what the "spot" on my liver was that showed its little face on the last CT. I had the nicest technician. He made sure I was warm, comfortable, helped me get my arms over my head, and treated me like a human being---quite the opposite of the girls at Pre-Surgery Testing.

As I was leaving I thanked him for being so nice to me. He said, "No. Thank you for being so nice. Where are you from?" "Virginia." He explained that he knew I was too friendly to be from New York. Look, Ma & Dad, proof you raised me with manners!

Time to head to our next appointment at the actual hospital. Let me tell you---that is one HUGE place. Obviously lost, the security guard helped us find where we needed to be. I met with Dr. Glenda's nurse to discuss the upcoming surgery, the drains I will have in, the recovery time. She really took her time explaining it all to us--which both Mom and I needed.

Next, off to meet the Head & Neck surgeon who will be assisting Dr. Glenda in the surgery next week. There is no other way to describe him and his nurse other than as being outstanding. Since I am the type of patient who needs warm-and-fuzzy, they pass with flying colors. The nurse, Jill, was out-stand-ing. She escorted us into the room, and said, "I am going to tell you what I know about you, OK?" And she did.

She listed mymedical history...which is really becoming too involved for my liking...however, I was relieved to know she already knew everything. This is another pro of Memorial Sloan Kettering--the doctors actually talk to one another! She had various emails between Dr. Glenda and the Head & Neck surgeon as proof I have been discussed quite thoroughly. After talking with Jill for a good twenty minutes, she left us to wait for Dr. Adorable (ask me his real makes me giggle.)

We waited.

and waited.

and waited.

Around 4:15--my appointment was at 2:45--Dr. Adorable walks in full of apologizes. Knowing how things happen in the medical field, and because I have never had to wait long for any appointment at Sloan Kettering, I did not mind one bit. 5 minutes into meeting him, I knew I was in good hands.

He is so nice.

He gets major points of course for complimenting me on my "poise," said I am fantastic, and that it is obvious both Mom and I have educated ourselves.

Cha-Ching--brownie points.

Back to the medical part--While examining my neck, Dr. Adorable continued to focus on one particular lymph node located on the left side of my neck, directly under my jaw line. I asked, "Is that supposed to hurt when you press on it like that?" He answered, "Well, there is a lymph node there." He examined me some more then says, "I feel like I got left out of the party..." And ordered a CAT scan of my neck. Of course I am now curious if he ordered that scan just to get a better picture of my neck prior to operating, or if he suspects something is wrong on the left side. The left side of my neck was negative for Melanoma; however, I am still paranoid.

I joked with Dr. Adorable about my mini breakdowns over every swollen lymph node. He laughed at my attempt of joking away a serious matter, then told me to try to relax...Not every swollen lymph node screams cancer.

Let's discuss the surgery: we all know it is a serious procedure because there are a lot of important nerves and muscles in our neck. Dr. Adorable said he plans to use the same incision site as Dr. Pink, but he will have to extend the incision about an inch forward and an inch backwards. It will kind of wrap around my neck. (Bummer.)

Here is the other (superficial) bummer: because Dr. Adorable will remove fat along with lymph nodes, there will be a noticeable difference in my neck. In other words it will appear to sink in a little. He did say that it almost always returns to normal in about six months.

I suppose I should begin my supply of light weight scarves for the summer, huh?

I know my appearance should be the last thing on my mind, I know that, but I have to admit I am a tad bit concerned about it. Is that wrong?

After meeting with Dr. Adorable, I feel one hundred percent positive I am making the right decision about having the surgery. As both surgeons keep telling me, I am young. Minus Melanoma, I am otherwise healthy. I can handle the surgery. Dr. Adorable said that if I was an 80 year old patient, he would have to scratch his head about operating. With me, he fully believes it is the best option.

We managed to get the CAT scan of my neck scheduled for 6:40 that evening so Mom and I headed down to the cafeteria to waste some time. There I am, facebooking on my iPad when Dr. Glenda calls to give me the official results of the MRI of my liver. Realizing we are still in the hospital, she tells us to head on up to her office. We did. She is such an awesome doctor...Mom and I agree, both surgeons make you feel like they are your friends, like you are not chart number 500232. She had the second opinion pathology report from my original surgery
back in January 2011. I am going to post the info then try to spell it out for you:

Sloan Kettering found my original tumor to be Melanoma.
Histologic Type: Superficial Spreading
Breslow thickness: 1.0 mm
Ulceration: Not identified (this is good news)
Mitotic index: 3/mm2
Clark level: IV
Surgical Margins: Not involved
Infiltrating lymphocytes: Non-brisk
Regression: Not identified.

Skin, left upper back, wide excision--no residual melanoma seen. (good thing!)

Lymph nodes--

Right suparclavicular sentinel node: consistent with micrometastaic melanoma.

Left suparclavicular sentinel node--2 benign lymph nodes, negative for melanoma (woo hoo!)

Right axillary sentinel node--after much debate, "the findings favor altogether a capsular nodal nevus." AKA---NO MELANOMA! (this was huge news since I orginally thought it was positive.)

Left axillary sentinel node-- Consistent with micrometastic melanoma. The largest aggregate measures 1.5 mm. 2 of the lymph nodes are involed."

What does all of that mean?

Basically nothing new...I am still Stage III A. It just shows that Melanoma is quite aggressive...which is another reason why I am doing the surgery to remove ALL of the lymph nodes in my right neck, left armpit.

The MRI of my liver: "Hypervascular segment 7 hepatic lesion; probably represents focal nodular hyperplasia. No evidence of metastatic disease." That is what we prayed for...NO METS!

Having Dr. Glenda spell out the pathology report and the MRI report made me feel a lot better. She even drew me pictures to fully explain things---no rushing me out of there. (I really am THAT patient who asks 102121 questions, but this is my life...I try my hardest not to be annoying.)

Said goodbye to Dr. Glenda and headed downstairs for yet another CAT Scan. Boy, I am going to glow when all of this is over. While the nurse put the IV in me, I came across the first patient I have seen who is right around my own age. He looked a lot worse than I do...I had to fight the urge to hug him. I hope he is lucky enough to have the support I have. Let's send me good juju, OK?

Alright---I made this post super long and I apologize. I just wanted to update everyone on yesterday. My day as a lab rat left me with very little bruising--oddly enough--YAY for nurses who know how to put in IV's!

This lab rat left New York this morning...back home at my parents, resting up before the big surgery. It is hard to believe I only have one week of being fully(ish) independent. I know the surgery is going to be a tough one--but--as someone commented on my facebook, I am one tough mamma jamma!

...and really...I have the best doctors on my side...that helps.