Wednesday, April 27, 2011

Pass the Tissues, please.

Yes, this is basically what I look like right now...except I think my face is more swollen. Holy Moley! As the saying goes, I am full of cold! I am not the only one though. It seems like all of us are sick...Mom, my older sister, the boyfriend. Protect yourselves--stay away!

Yesterday I did the most independent thing I have done since my first surgery in January: I made the 6 hour drive from the Eastern Shore of VA to Roanoke! Although my Dad & Pop strongly advised me not to, Mom knew it was what I wanted. Everyone was worried I would become too exhausted or the pain in my arms would be too much. Although it was not pleasant, it was not the most horrible thing either. My left arm is not even swollen today! Progress! I have to admit, it felt pretty awesome being in the driver's seat again.

So, yeah. I am back in Roanoke for 6 days. I wanted to spend some time with Mr. Spots (the boyfriend, for those of you who haven't read the older posts!) organize my mail, get some clothes, etc. Once I arrived, I realized how sick Mr. Spots is also. Needless to say, last night consisted of us watching a movie on the couch with a box of tissues between us. Thank God for cold medicine! We were both able to sleep last night. It was not nearly as romantic as I would have liked for the night to be, but, if I am going to be stuck in the house with a cold, I am glad to be stuck next to him.

My insurance company, "And.Them." is being ridiculous again....If they would all get on the same page, they could save themselves a lot of time and money. They approved my latest surgery, but denied the pathology part of it for a "pre-existing" condition. The also have denied my latest visit with the dermatologist for a "pre-existing condition." Seriously, if I am going to have to call them and casually remind them that I got diagnosed with melanoma in January of  THIS year, that is unacceptable to me. They already have my medical records. I am not sure why they don't access them. How do they run a successful company? Fighting with them is becoming a full time job!

Since I just had yet another sneeze fit, I am going to cut this post short.

Oh--one last thing--the emails I have received from you all  mean so much to me. We have to stick together! I learn more from you all than I do from any medical article I find. Knowledge is power, and we need as much power as we can get. XO

Monday, April 25, 2011

Going Postal!

*thanks, Rich, author of, for the title of this post!

My granny wearing her shirt around the Island

Apparently today was unofficially the day to wear the "Someone I love has melanoma" t-shirt. You would think the shirt would promote awareness, questions, concerns. Not giggles.

Someone laughed at a "Someone I love has melanoma" t-shirt?

She sure did.

Mom went into the post office this morning, nothing unusual about that, and walks up to the counter. The overly tan woman reads Mom's shirt out loud..."Someone I love has melanoma!" And begins to laugh.

Mom: "Yeah, my daughter."

The woman stops laughing. "Oh.... Oh. I'm sorry. I knew you hadn't been yourself lately."

Usually I can find a sarcastic way to interpret things. Normally I can try to see the other side of the situation. As hard as I have tried, I cannot understand why she would laugh at the t-shirt. What about "Someone I love has melanoma" is funny? How can that statement even induce a chuckle? Does she, Mrs. Super-Tan-Postal-Worker, think melanoma is a myth? Does she even know what melanoma is? I am not trying to call the woman stupid, but c'mon!

Luckily I did not have to bail Mom out of jail for attacking her. I mean, like I have said 100 times, you can't fight stupid.

Mom went back into the post office later this afternoon, the laughing woman was still working, and proceeded to explain to Mom that she knows people who have had multiple melanoma's removed off of their bodies and they are just fine. Mom said she did not say a word. I know that not everyone understands the seriousness of melanoma...I used to be one of them. God knows I wish I could have just had a dermatologist use his knife and remove something off of me. Instead, 2 major surgeries, lots of radiation and contrast later, and I am just now beginning on my NED (No Evidence of Disease) road. How long that road will last, I do not know. I am doing every thing in my power to make it last for many, many years.

One of my sorority sisters made a good point. She said, "if something isn't pink or doesn't say "save the tatas" people dont seem to take it seriously. I think people need a wake up call as to how many millions of people are battling cancer every day and just how many types there are... and none of them are a laughing matter. ignorance/stupidity is a shame."

I could not have said it better myself, Kristen!

Seriously....I do not know how many times I have to say it. (And don't worry, I am not going to stop anytime soon!)

 It is so much more than "just" skin cancer.

Sunday, April 24, 2011

Happy Easter

Happy Easter, friends!

I hope you all had a wonderful, relaxing day surrounded by those you love. If your weather was as beautiful there as it was here, I sure hope you wore your sunscreen! (And please tell me you covered your babies with sunscreen while they went out on their egg hunt...don't forget about the kids!) 

It was a beautiful day on the Eastern Shore of VA so I lathered up in SPF 50, grabbed my book, and went out by the pool for a bit. Although almost completely covered, I have to admit I was still a bit nervous being out in the sunshine. I stayed out for about 20 minutes then gave into my fear and sat back in the shade. It felt good to get a few minutes of fresh air!

We had a very quiet family dinner today. All of the family is spread out, boyfriend is with his family in Roanoke, so it was very laid back. Mom did not slack on the food though...yum, yum, yum!

None of us complained about the quiet day. My older sister, my gran, my mom, and I all have nasty colds. There is a whole lot of coughing going on in this household! Stay away from us, protect yourself from our germs! ;-)

I received an awesome suggestion from one of my blog readers. She read my post about lympedema and suggested propping my arm up and using a squeeze ball! What is so random about that is that I had recently told my Step Dad I felt like I needed a squeeze ball because of the throbbing pain in my left hand. Who knew it would actually help?! Looks like I will be on a mission to find the ball tomorrow...Although I rested all day yesterday, the swelling was pretty intense on my left ribcage today. Lots of fluid, I suppose.

I am going to go drug myself on cold medicine and rest. I hope you all had a special day.


Saturday, April 23, 2011

Dr. Glinda...And My Need For Rest!

My boyfriend's sister gave this to me!
Reminder--Dr. Glinda is my surgeon at
Memorial Sloan Kettering Cancer Center.
I named her Glinda because of her beautiful smile,
curly blonde hair,
and the fact that she was my "good witch."
She brought me peace of mind.

To finish off my busy day at MSK, I had my post-op appointment with Dr. Glinda on Friday. It is always such a pleasure to see her. I cannot express how grateful I am that she is my surgeon.

I have mentioned the pain that is continuing to get worse in my left arm. It tends to be extremely painful and swollen at night, causes my hand to throb, and basically just feels uncomfortable. Dr. Glinda noticed right away the difference in my left hand compared to my right hand. (So, that's why they are always observing my hands...) She felt around the incision sites, looked at my arm, the left side of my rib cage, etc. I have some fluid build up which I had already suspected.

Since I only had the arm drains for 6 days, it should come as no surprise that there is a build up. We were hoping it would not happen, but it comes as no shock. Most people have to keep their drains for multiple weeks. For whatever reason, my body was not producing a great deal of fluid so we removed them before I headed back to Virginia.

So, lymphedema, what do I do about it?

Since it has only been 4 weeks from surgery, and I was not supposed to truly be active until week 8, we are going to wait a week or 2 and see if it gets better. If not, I am going to find a physical therapist who can instruct me on excersies to help my range of motion (which is limited right now...) and to do a special type of massage therapy. I am not excited about the possibility of massage therapy. Right now, it HURTS when someone touches the back of my arm. However, I know that lymphedema is chronic and if it gets worse, it will not get better. I want to stop it before it reaches that point!

Dr. Glinda made a good point yesterday...I cannot fear the sun. "Your days of laying out in the sun are over, of course, but a healthy amount of vitamin D is good for you." I admitted that I am a bit paranoid about the sun right now which she said is totally understandable. I still spent time by the pool when I was in Florida. I wear short sleeve shirts when I go outside. But you can bet I am careful...I think that is only normal. I have been expecting the doctors to kindly remind me to stay out of the sunshine, so I was pleasantly surprised with how realistic she is.

Then I got a nice mini lecture from Dr. Glinda. She reminded me that I need to pay more attention to my body. When I am tired, I need to rest. I need to stop behaving like I am completely healed because it takes a body 6-8 weeks to heal after surgery. I don't think I truly know how to relax. I try...but I always find something to clean, someone to see. I see the toll it is taking on me though. Lesson learned: LISTEN TO MY BODY!

The appointment was a good one...The incision under my arm and on the right side of my neck are both healing perfectly. I am going to rest, keep my arm propped up, and try to lose the fluid! I definitely do not want to risk having the drain put in again. That thing was horrible enough the first time! ;-)

I Should Not Judge But..........

**This post was taken a little too seriously by someone so I thought I would post a warning: Obviously, this is just my opinion of a woman I observed for ten minutes. No, I did not actually want to slap her. She just annoyed me because of her public negativity. There are certain things that should take place behind closed doors---definitely not in front of fellow cancer patients who are hanging on to any hope they can find. Now please---read on. And don't always take me so seriously....goodness! I tend to be a bit sarcastic about my makes it less scary! ;-)

While waiting for my appointment on Friday, I was seated across from a woman and her parents. I am always curious about other people in the waiting room. How advanced is their cancer? How are they handling the anxiety and depression that comes with the territory? Are they in remission?

This woman did not make me curious. She was having an open (and rude) conversation with her parents. She was a pretty lady, maybe in her mid 30's, demanding her father promise her that everything is going to be OK. first I thought, "Oh man. This breaks my heart." Then I thought about it some more. How cruel of her to ask someone to promise that everything is going to be OK. Her poor father looked stressed out enough. I mean, he is there with his daughter--who appeared to be quite the Daddy's Girl--in a top cancer center. I guarantee you he wishes nothing more than to be able to promise her that she will be "OK." I understand we sometimes need to hear "you are going to be fine." Maybe it was the way she behaved that bothered me more than her selfish request. If she had been nicer about it, my heart probably would have broken for her. Instead, her nasty attitude made me raise my eyebrows.

Then she looks at her Mother & starts discussing how things are getting worse, not better, that there is no sense in buying summer clothes because basically she does not know if she will be here or not. Talk about a debbie freaking downer. Yes, I do not know her situation. They may have given her 3 months to live---but based on the attitude of her parents, I have a feeling this woman just has a nasty attitude. Don't get me wrong, having cancer freaking sucks no matter how advanced it is. But, why waste the time you are given being downright rude to those who love you? She was ready to bury her own self. When her mother patiently reminded her how far a positive attitude can take her, she made a smart remark.

Quite frankly, she pissed me off. I wanted to slap some sense into her. She may have a terminal disease that will only allow her a few more months to live. But, she was still able to get from point A to point B. She was able to make herself pretty for her doctors appointment. She was stable enough to belittle her parents in a waiting room full of curious people.(This is obviously what bothered me most about this woman.) She made me angry, but at the same time I feel so sorry for her. She must be absolutely miserable being that miserable!  I wanted to show her my friends who feel so horrible they can't take their kids to school, but can still laugh daily. I wish she could see the warriors who are, in fact, stage IV cancer patients, but still make the extra effort to be there for their friends. I wanted to remind her that her parents did not have to be at that appointment with her, they made the decision to be. Give them some respect, lady. Even if you do feel crappy, don't be hurtful. I think life is tough enough.

The point of sharing this story is that I honestly believe a positive attitude can do wonders for you, not just with cancer but with your daily life. Things get scary sometimes. I have days where I am terrified. Days where I am ticked off at the world. I embrace with those feelings, and then I deal with it. If people crumbled because of one bad thing (no matter how horrible it is) happened to them, well, we would be surrounded by a lot of miserable people, huh?

The truth is, sh*t happens sometimes. That is a part of life. You accept it, you deal with it, and you move on in any type of way you can.

I sure hope she finds the peace that she so obviously needs.

OK. Rant over.

Future City Lady?

Seeing the New York City skyline never gets old to me.

Instead of staying in our overpriced-kissing-cheek-doorman-hotel, Mom somehow got lucky enough to score a great room at the Hyatt Regency in Jersey City for less than $100. Considering the rooms in our normal hotel--which is located directly next to Sloan Kettering's outpatient center--were about $400 for Thursday night, we were thrilled with Mom's awesome trip planning skills (or maybe it was just good luck...)

Staying in Jersey City meant we had a new task to conquer: using the subway...successfully!

As most of you know, my sense of direction is quite awful. However, Mom is the best travel companion ever.While waiting for Melanoma & the City to get off work, Mom and I decided to do a trial subway trip. We wanted to make sure we knew what we were doing so we would not get lost Friday morning and be late for my appointments. Getting from the Path Station to World Trade Center was simple. So simple even I would not have gotten lost. Figuring out which subway to use after leaving the Path? That is where things got tricky... Due to our lack of subway knowledge, and thanks to the lack of signs, we got a little flustered while trying to figure out which subway to use next. We ended up walking around Tribeca for a while--secretly hoping to see a celebrity since the Tribeca Film Festival was taking place--until my dear friend Melanoma & the City reminded me I could download a subway map on my phone. Oh, the joys of technology! While that was downloading, she texted me the correct subway we wanted to use. Getting back to Jersey City from NYC was a piece of cake. Trial subway run = success.

Thursday evening Mom & I joined Melanoma & the City for dinner in the cutest bar & restaurant a few blocks from our hotel. If I wanted to live near NYC, I think I would truly enjoy Jersey City more. It was quiet but sophisticated. We chit chatted over delicious sandwiches and wine, sharing our latest melanoma stories. She also sees The Wizard at Sloan Kettering so it is always interesting to compare stories. We both think he is pretty awesome...even if he does kindly suggest our back scars are ugly! ;-)

Friday morning came too soon. Mom & I were on the subway at 8:00 which was shockingly slow considering that is rush hour. We made the observation that people on subways will do everything in their power not to talk to each other. They will read, listen to their iPod, or sleep. It is almost creepy how silent the train is even though it is crowded.

After having a delicious breakfast, we headed over to Memorial Sloan Kettering's outpatient center for my appointment with The Wizard. Even though it has been 4 months since I was diagnosed with melanoma, it is still a huge shock when I see the sign hanging on the building: Memorial Sloan Kettering Cancer Center. It is the "Cancer Center" part that gets me. It is sometimes easy to pretend this is all just a horrible nightmare. Walking into the center, telling the receptionist my name, and having her actually confirm my information is a big fat reality check. Very sobering.

Anyway--The Wizard is thrilled with my decision to enroll in the Ipi trial. He explained I am not only doing myself a benefit, but I am helping society as a whole. Thanks to people who take these risks, medical research can continue. I guess I have done my good deed this month!

Directly following my appointment with The Wizard, I was sent off for blood work. Now, I have complained about this before, and I will continue to complain about it until the medical field starts to listen. If you are going to take blood from me, please make an effort not to hurt me. I honestly do not bruise that easily. Here is a picture of my arm last night. (Less than 24 hours after she did it!)

Now, that is unacceptable. I do not bruise that easily. I know she was in a hurry...but OUCH! 

The good news is that my labs arrived to me via Sloan Kettering's awesome patient website, and all is good! Doctors are always concerned about LDH levels. LDH levels are checked to see if the cancer has metastasized (spread) to organs beyond the skin or lymph nodes. My level was actually lower this time than the previous time. Everything else looks good, too. *Who knew I would learn to read labs and become overly excited when I see I am doing OK based on those 4 tubes of blood?!*

After the bloodwork, I was sent for an EKG. Since I am unable to lift my left arm over my head, it makes getting undressed difficult at times. Yesterday my arm was extremely sore and I could not--despite my best effort--get my sweater off. The poor old man scheduled to do my EKG became uncomfortable and grabbed a female to help me get undressed. No time for modesty... Good things from the EKG---my heart is A-OK!

It feels great to be receiving such good news lately. The first two months it was like we continued to get hit with bad news. Now any bit of good news I receive, I thrive on. It keeps me going!

I will post about my appointment with Dr. Glinda later...I apologize this post is so long. I guess a lot happened in 24 hours. ;-)

Friday, April 22, 2011

Ahoy Yervoy

It is official. I have enrolled in the Yervoy (or better known as ipi trial) trial at Memorial Sloan Kettering.

*I will give a full report of my latest NYC trip tomorrow...Too tired tonight!*

What is Yervoy? (Yeah, it does not sound like english to me either.) To briefly break it down for you...

Ipilumumab is an antibody that activates the body's immune system to fight melanoma. As someone said to me today, your immune system can really "stick it to melanoma." Hopefully that will be the case. Side effects can vary greatly, which makes sense if you think about it because the human immune system varies from person to person. No two people will respond the same way. "The most common side effects of ipilimumab occur in the gastrointestinal tract (such as diarrhea and inflammation of the colon) and the skin (such as rash and inflammation of the skin). Less frequently occurring side effects include hepatitis, inflammation of the pituitary gland (hypophysitis), eye inflammation (uveitis), and kidney problems (nephritis). Side effects occur in up to 84% of patients but are generally mild and treatable." I will be in close, close contact with The Wizarad and his staff. If there is anything that causes them to raise their eyebrows, they will evaluate me and see how to handle it.

Ipilimumab was FDA approved while I was in the hospital a few weeks ago. The approval of this drug is major. (As surgeon had tears in her eyes type of major!) According to Richard Pazdur, MD, director of the Office of Oncology Drug Products in the FDA's Center for Drug Evaluation and Research, prior to Ipilimumab, there were little treatment options available for patients with advanced melanoma. There were no options that prolonged a patient's life. *Now do you see why the FDA approval of Ipilimumab is so major?!

Here is what will happen:

On May 6th I will head back to NYC for another CT Scan & brain MRI. If all is well, I will return to NYC on May 20th for my first treatment. I will meet with The Wizard at 9:15 to have labs completed that will assure I am healthy enough to go forward. I will give both a blood & urine sample. They have to make sure all is OK---and that there are no buns in the oven--before sending me to the "Chemo Suite." 

Yes...they will be giving me a preggo test at every appointment. Nothing like a good ol' safe sex talk in front of my mother...

After The Wizard clears me, I will head over to the next floor---the "Chemo Suite." I will be hooked up for 90 minutes. Once I finish my cocktail-by-iv, I will be observed for an hour to make sure nothing dramatic happens. Then I get to go home. This will happen once every 3 weeks for 4 infusions. I will be scanned every 12 weeks to see what is happening inside of me!  After the 4th infusion, I will go on a 3 month schedule for 3 years.

Good thing I like New York City, right?

Here is the tricky part about this trial: there is a 50% chance I will receive the drug. There is a 50% chance I will receive a placebo. I will never know for sure which I have received. The doctors will never know for sure which I have received. Sure, we can guess by the side effects, but no one will ever directly tell us.

Why am I doing this even though there is a chance I will receive a placebo? For starters, there is a 50% chance I could receive the drug...the drug that is being proven to help advanced melanoma patients. Even if I do not receive the drug, I will be closely observed for the next 3 years. God forbid the cancer advances, we will know right away.

The Wizard spelled it out for me today: "You have a hard decision to make. You are stuck between a disease that can lead to mortality or you can try a drug that could lead to mortality. Unfortunately we know that the recurrence rate of advanced melanoma is high...If it comes back, and you have done this trial, you will know that you have done everything you could possibly do."

Isn't that why I did the surgery? (Which I totally do not regret.)

I am a fighter. I think that is the one thing in my life I know I am good at. So, I am going to fight. Yes, I am dedicating 3 years of my life to this trial; however, 3 years is nothing in the grand scheme of things.

Once I get through the 4 infusions, I will be able to return to my normal life. (I am looking forward to that!) Thanks to my amazing doctors, friends, and research, I know that choosing to do this trial is the absolute best thing for me.

You gotta do what you gotta do sometimes, right?

Thursday, April 21, 2011

New York, New York...Again.

Well, it has been exactly 4 weeks since my last surgery. Guess what that means? It is time for more tests, talks, and decisions!

Mr. Spots asked me this morning if I am excited to get back to New York. I hesitated, he said, "I guess it is an old hat now, huh?" Exactlyyyyy. All 4 trips have left me battered and bruised, so I don't know how thrilled I am to see New York again. Maybe Mom and I will fit in some fun stuff, too. At least this time there are no hospital stays! Woo hoo!

Mom and I are heading up to Jersey City today. Thanks to her super-awesome-wonderful trip planning skills, she found a room in a 4-star hotel for about $300 less than the comfortable-but-nothing-special room. (How she got a room in an awesome hotel for $89.00, I am not sure. If you ever need to plan a trip, contact my momma!) I sure will miss the doorman kissing my cheek though!

Staying in Jersey City means we have a new adventure ahead of us...the subway.

I have done my fair share of traveling in my 24 years but I have never used the subway. This should get interesting! Thanks to my dear friend Melanoma & the City, we will hopefully not get too lost! ;-)

Well, off we go...I meet with The Wizard, my oncologist, tomorrow morning at 9:15.  I see Dr. Glinda, my surgeon, at 1 PM.

I wonder if their super handsome "fellows" will be attending these meetings... ;-)

Happy Thursday, friends.

Wednesday, April 20, 2011

"A scar means, I survived."

You all know I have a love/hate relationship with my scars.

I went from having no visible scars to BAM---"What happened to you?!" type of scars in less than 2 months. I love the scars because they are what keeps me healthy. They are my badges of honor, the visible evidence of how serious (and ugly) melanoma is. (If that does not keep you out of the tanning bed, please do not be offended when I consider you to be an idiot.)  But c'mon, I am a 24 year old female who appreciates feeling attractive. Do you blame me for having a minor issue with these babies?

At the benefit this weekend I met a lovely lady who is a fellow melanoma survivor. She found her way to my blog and left this passage on one of the posts about my scars.

"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.

-from Little Bee by Chris Cleave

Thanks to you, Andrea, I will never think of my scars in a negative way again.

Unless you have been in this situation, I do not think you understand how difficult it is to openly accept your scars. It is easy to sit back and say "love them! They are keeping you alive." But until you are faced with the situation of going out in public and being openly stared at, please try to be patient. Think about chemo patients. They can't exactly hide their bald heads. Do you blame them for feeling sad when they look in the mirror? Wouldn't you? They did not choose to be all Natalie Portman... Yes, the reason their head is bald is a good one...It means they are hopefully on the road to recovery, but it does not mean that we will all love our new look. It makes being "normal" a little more difficult.

For months people have been lecturing me about why I should embrace my scars, why I should feel proud to have them, and I am. I made the decision cut my hair without fear of people staring at my neck. I wear shirts that show my shoulders and the big gash that streches from my spine almost to my shoulder blade. I will wear a bathing suit this summer that shows ALL of my scars, including the "bullet holes." (From the two drains that removed the fluid.) I will shove these ugly scars right into your face with no regret. But...I would be lying if I said I was as confident as I used to be. You have to understand....everything about my life, including my body, changed without me having any control over it. That takes some getting used to, folks.

However, because of this passage Andrea shared with me, I feel at peace with my "new" body. You know how sometimes something someone says just hits home for you? That is what this was for me. It clicked.  I guess I never looked at it like this...

A scar does not form on the dying.

My body is still forming scars....

I am alive...

I have survived.

Tuesday, April 19, 2011

Peace, Love, Cure Melanoma Benefit 4/17/2011

Not long after I made it public that I have stage III melanoma, our favorite local band, PolyChrome, contacted my boyfriend, my sister, and my best friend asking if they could organize a benefit event to help cover medical and travel costs during this crazy time. (Read original post here.)

I had no idea how big the event would actually be!

A bar in Roanoke, Schooners, donated their location, 8 bands donanted their time, and we had a blast! I will explain the day in picture form. (I do not take the credit for most of these pictures. Thanks to everyone for sharing!)

If you need a photographer, I suggest Robert West.
This is a picture of the shirt table.
A special thanks to Rayna & Christie for handling
the shirt sales, raffle tickets, and for
basically just being awesome friends!

The bartenders who made sure to keep
the crowd happy by keeping their drinks full!
*And I love them for wearing the shirts!

The guy who organized the entire event.
He would never take credit for planning everything but a little birdie told on him!
Sean Bera, you are one special dude.
You will always have a special place in my heart.

This is PolyChrome...the ones we owe extra thanks to.
Perry says we have to stop thanking them
but I had to do it one more time!
Besides being very sweet guys,
PolyChrome is an awesome, energetic, entertaining, talented band.
Go see them!

My sister & I with two amazing guys
who have had their own trials to face,
but continue to remain positive.
You guys give me strength!

The beginning of the day!

My Dad & Step-Mom out showing support!

My Older sister Erin,
Baby sister Cara,
"Canadian Mom," Susan
Step-Dad Bill
Momma Connie
"Richmond Mom," Tiffany

Since PolyChrome went against their goal of only
playing originals since they know we love
their version of Wagon Wheel,
I had to dance with Pop!

Were you a lucky winner?! :-)

A special thanks to these guys for donating their time & effort!

These guys are fun!
Looking forward to seeing them again.

These guys are very fun...
and their lead singer is a sweetheart.
Thanks, guys!

This girl can SING!
Seems like a sweet lady, too.
The band was awesome.

These guys had the crowd on the dance floor!
Thanks, guys. I hope you had fun, too!

Mafia Track Suit performing...
(If anyone has a better picture, please let me know!!)
They were such NICE guys!
If you have the opportunity to see them, do it!

I think my boyfriend fell in love with these guys!
Very cool group who closed the night out.

This guy deserves a very special thank you...

Wes was there ALL day long for all 8 bands, taking care of their sound, etc. I heard a rumor about how much he gets paid for an event, so for him to donate a full day's work...well...that is unbelievable. Look up CM Productions for your next event. He had a buddy lose his battle with melanoma...WEAR SUNSCREEN!

The boyfriend...Couldn't get through this without him!

Look who made it from NC?!
Love you, lady!

My beautiful sisters...
and Sean!

Around 8 PM, I started to feel pretty yucky...
After being there for 8 hours, I had almost reached my limit.
Although I loved meeting so many new people,
my body was a bit tired.
When you are being hugged and grabbed on for 8 hours recently after surgery,
it hurts. ;-)

At about 9 PM I told the boyfriend, AKA Mr. Spots, I was ready to go.
He continued to postpone leaving...
coming up with excuses,
people to talk to, etc...

I had no idea Sean had put together one last surprise for me...

Although everyone had already done MORE than enough for me,
Sean donated his (I think?) guitar and had all of the bands sign it
as a way for me to remember the special day. I could ever, ever forget.

So...all in all, it was a memorable, special, emotional day. I met fellow melanoma warriors. I met strangers who said they will never tan again. I even met a woman who demanded I give her a list of reasons why she should not tan...(After I gave her the reasons why, and she said "SO?" I had to walk away. Sometimes you really cannot argue with stupid. haha!)

I have always been amazed at the way a community surrounds people in their time of need. This time it was for me.

I look forward to being able to help them in the future.

Again---thank you to everyone: the bands who donated their time & energy without complaint, the friends & family who traveled great distances to be there for the event, the strangers who shared the beautiful Sunday with us, the staff of Schooner's for putting up with all of us, and again...I have to thank PolyChrome for organizing the entire event. You three have a very special, special place in my heart.

(OK, Perry...I will not thank you anymore!!!)

Wednesday, April 13, 2011

You've Got A Friend In Me.

"There are people in my life who give me comfort. When the going gets tough, as it invariably does, I can count on them for a shoulder to cry on - they will lift me up when I fall, they will hold me in their arms as I cry and tell me, 'Everything’s going to be okay.' I am so thankful for those people.
They are priceless."

Someone made a rude comment to me today...They said that I need to feel supported in every little thing...that I am, I don't remember if the person used these words directly or not, an attention whore.

It got me thinking...Do I really beg for that much attention?

I put my information out there. I share my experiences with other people. I post updates on facebook that let people into the little life that is mine.

But, you have to make an active choice to read the ins and outs of my mind. No one forces you to click the appropriate link to my blog. No one holds a gun to your head to comment on my status updates. If I annoy you, delete me. It is that easy.

Then I started thinking, do I need the support from everyone?

The honest to God truth is that I do not know how I would have gotten through the last 4 months of my life had it not been for my support system.

If you know me in "real life" I can get shy...I will take a very serious matter, smile at you, and tell you I am just fine...even if I am pinching myself under the table not to cry. It is easier for me to gloss over the scary stuff by avoiding it. It is how I hold it together. Through the internet and this blog, I have been able to share my deepest secrets, say whatever I need to say, without truly caring what other people think. Can you imagine me looking at you and admitting, "I am scared I will not live to see 30. I am jealous of mothers. I hate orange people." People would call me crazy!

The way that I see it, I could write this and not a single person could read it, but I would still feel better. I am a writer. I write. Half of the time, something I write about on the blog is the very thing that will make me cringe if you try to make me talk about it in person. Certain things hit too close to home. I publish this blog because I have no way of knowing who reads it. I do not need to know. I do not want to know. I get my own version of therapy by writing. People have to choose to read it. I get nothing out of you reading it. It is the emails from strangers telling me how I inspired them to show their scars that help me. It is the messages of encouragement that make me smile. It is hearing the stories of your dermatologist appointments and your avoidance of tanning beds that makes me certain I am doing a good thing by sharing my story. It is knowing that I have friends behind me patiently waiting to give me a boost when I sink too low.  

If that makes me an attention be it.

I have a support team like none other & I will be eternally grateful.

I, dear friends, would truly be lost without you.

Tuesday, April 12, 2011

Losing The Security Blanket

Over the last few months I had let my hair grow pretty long. Considering the 3 surgeries I have had in 5 months that limited my mobility, I appreciated being able to take 30 seconds to tie my hair up in a pony tail or have someone do it for me (which happened more than you would think...) I needed that option. Yes, it was fun playing around with my long, super curly hair...but I did not feel pretty. Thinking back on my favorite haircut, it was my senior year of college...I loved it. It was short. It was sassy. It felt like "me."

So, I was having a chit chat with Mom this morning, trying to decide which picture to submit along with an article that will be featured next Tuesday on She mentioned my favorite haircut...which got the gears turning in my head.

It is about to be summer time...I need a change...I want to feel sassy and brave again. oh, and pretty. Call me vain but I want to feel attractive again.

Cutting my hair would be like asking a child to give up their favorite teddy bear. I have to admit I am back to hiding behind my hair....and behind scarves. You know that song by Sugarland? She sings, "Little Miss hide your scars..." I have become that Little Miss.  My latest neck scar is not even bad...considering what was done! But my confidence feels a lot lower...I feel beaten down lately. I have not felt like writing. I do not feel like talking. God help you if you try to make me do anything I don't feel like doing... I do not understand why---I should be ecstatic...and I am...but I feel like so much has been taken from me. I an emotional basket case? Yes.

I sat here on the couch and cried...not in a "I feel sorry for myself way" but a "you idiot, you are the one lecturing others about melanoma. Cut your hair. Show your scars. Let people see that melanoma really CAN happen" type of way. I felt ridiculous for being so nervous. Who cares if people stare at me? I will politely smile and make them realize they are being rude.

So, I got in the car and went to see my hair stylist. I knew if I waited, I would change my mind. When my very young stylist asked about my scars, I flat out told her "I have had two surgeries since January for stage III melanoma. Soooo, yeah....don't tan." And I smiled and kind of laughed.

Why hide it?

The stylist next to her was so amazed by my scars...He said had I not said anything, he would have never noticed them. (Thanks, bud. I am not sure if you were just being polite or what but you made this girl smile.)

I have been through too much in the last 4 months to start hiding again. I will wear shirts that show my back. I will wear a bathing suit that shows all of my scars...including my "bullet holes." I will enjoy my sassy hair cut...and I will feel sorry for the first idiot who makes a rude comment about my many scars. No one can do a guilt trip quite as good as I can. ;-)

Monday, April 11, 2011

Introducing Ms. Neck Scar

It has been 17 days since my most recent surgery! Although my energy level is still extremely low, I am healing! I figure it is time to introduce my latest neck incision. I have not shared it before because it was covered in a bandage for the first week and a half after surgery.

Looks pretty good, huh? I mean...all things considered.... It could totally be worse. I imagined it would be worse.

In regards to the "sunken" appearance Dr. Adorable warned me about, it is not too terribe. As Mom said, it just looks like I am REALLY skinny on one side of my body! Mr. Spots claims he does not notice it, but I do...I still have a hard time touching that area. It gives me the jeebies.

More great news--I have almost regained full feeling in my right ear and the right side of my face! It still feels a little tingly, especially if someone else touches it, but it is improving. I have even worn earrings! Three times!

It is all about the little things...

My left arm is still causing me some issues. The swelling is back. The rash is hanging around but finally starting to clear. The pain is intense at times. All normal symptoms to a full lymph node dissection. I am definitely looking forward to the day I can drive without cringing and opening a door without feeling like it's 100 pounds.

The mood swings are record breaking. It is almost comical...except it is not. If given enough time, I will cry over spilled milk. I will yell over an alarm. I will ache for my old life. But if you are patient with me, I pull myself together and I am back with a smile on my face. Sometimes I just need a few minutes alone.

Someone told me that adjusting back to my "real life" would be difficult. She was not lying. I have not even returned to my normal day to day life and I am struggling. It is always the little things, too.... Things that used to bother me a little bit bother me a heck of a lot more...

Hey, "C" friends, when will I get my energy back? I miss it.

Friday, April 8, 2011

A Big Sister Always Knows What To Say.

*My older sister just posted this to my facebook page, but because it was the most perfect birthday wish, I needed to share it. It, and my sissy, are keepers.

 "It's funny. When you were born you were like my very own doll baby come to life - a five year old's dream come true. The appeal wears off after awhile once you realize that little sisters (unlike baby dolls) cry, steal your favorite earrings, tattle, pester you incessantly, and lose all the dust jackets off your books (or get them wet... in the tub). All the while, even at their most obnoxious, big sister's remain fiercely loyal, and are there to be a source of advice, comfort, hugs and the occasional assault and nightmare inducing story. Then one day, your little sister starts to be a real person. She matures, becomes a friend in addition to a sister, and learns to be her own woman. Life hasn't always been easy, little sister - but you have always been a survivor. Happy Birthday, Chel - may all your birthday wishes come true. 24 is going to be an amazing year for you. I can't wait to see what you accomplish in the next 24. You are the one who will make a difference in this world, and I am forever in your corner."

And yes...this messed up my perfectly applied make-up.

I do---without a doubt---have the best family a person could wish ask for. Without a doubt.

24 Candles.

This time last year, April 8th, I was struggling to accept the fact that I was turning 23. Oh, I know what you will say...23 is nothing. I am still young enough to do everything I want to do, I know. However, I remember being 18, imagining life at 23... I was certain I would marry my college sweetheart, land the perfect job, and have a baby by 26.

Oh, my little 18 year old self was determined to rush through my life!

So, "23" was bittersweet. There I was, living in Richmond, a recent college graduate who spent her days applying for a ridiculous number of jobs, working the late night shift at a bar, and partying with my friends until the very early morning hours. I was disappointed...where was my dream job? Why didn't Richmond feel like home? Why was I working my butt off just to pay rent in a beautiful, beautiful apartment I never hung out in? It was not what I had pictured for myself when I was 18.

When I turned 23, I had no idea how dramatically my life would change. "23" was the year I met the guy I want to spend the rest of my life with. "23" was the year I moved to a place I can call home. "23" was when I gained a second family I adore...including a kiddo who is determined to teach me all I need to know before having one of my own! ;-) It was the year I met my boss who respects me and challenges me to think outside of the box.

And then there was the other half of the year...Medically, "23" was the most painful, emotional, life changing year of my life. For three months I suffered from severe pain due to endometriosis (Thanks to the lovely doctors who--instead of treating me for what they suspected-sent me for thousands of dollars worth of tests, scans, and a surgery.) Then in November, my personal McDreamy finally "fixed" me. Weeks after recovering from that surgery, I was thrilled that I could avoid anything in a lab coat for a while.

That was about the time I found "the" mole...

          ...and life as I knew it crashed.

I do not know how to describe to people the shock, fear, and anger I felt when I learned I have melanoma. Oh, and when multiple lymph node basins were positive for melanoma? Well, most people would have had an emotional breakdown. (I probably should have allowed myself to one...) I went from joking with my boyfriend, planning our evening, to hearing I needed surgery, treatment, possible radiation that may harm my reproductive system, etc.

In the words of one doctor, "It will not kill you...right now."

Instead of falling completely apart, I have held my head high. I have joked with my sisters about having my babies for me. I have flirted with the doctors while they checked my fashionable drains. I have my Medical Power of Attorney completed in case--God forbid--something happens. I have taken matters into my own hands. Why? Those things I have control over...Melanoma, I do not.

There is a plus side to hearing I may or may not survive my 20's. It has challenged me to truly look at what I want out of this life I have been granted. Do I waste days fighting with my boyfriend over the messy kitchen? Not anymore. Do I have an awkward relationship with my Step Mom? Thankfully, no. Do I argue with my parents when they are being overbearing? ...well...not as much! ;-) Do I go without telling the people I love how I feel about them? Heck no. Will I waste time on people who will not "waste" time on me? Psssh. Forget it.

Life is too short.

This year, instead of fretting about my life not going as planned, I am grateful. I am excited for "24" candles on my birthday cake. I am thankful my support system continues to allow me to receive the best medical care possible. I am blessed to be surrounded by people who truly, truly love me.

And really....when it comes down to it...

I am just thrilled to be alive.

Wednesday, April 6, 2011

...And I Got Blocked From The Social Network.

Tonight after I finished writing the previous post, I went to link my blog onto my "Social" page. 

"This site has been flagged for abusive material. If you think this is incorrect..."

So, I tried again...knowing there was a mistake.

"This site has been flagged for abusive material. If you think this is incorrect..."

And I try again...

"This site has been flagged for abusive material. If you think this is incorrect..."

Someone obviously had an issue with me sharing my stage III melanoma story.
          Or some immature person has a problem with ME...which in that case, why are you friends with me on this social network in the first place? 

What part is offensive?

The fact that melanoma can happen to 20 year old's,

The fact that tanning beds are probably a great indicator of why so many young people are being diagnosed instead of the 70 year old men previously known to get melanoma,

The fact that YES, IT CAN HAPPEN TO YOU,

The fact that the surgeries are brutal,

...and the healing after surgery is the ugliest and most painful thing I have ever experienced,

(What, did the pictures bother you? Guess what, you cancer snob,  those scars were made by doctors trying to save my life.)

The fact that there is no "cure" for melanoma? 

The fact that advanced melanoma is terminal?

The fact that living with melanoma is my reality?

If THAT is offensive to you...

grow the hell up.

What Not To Say...

If you ever find yourself in the unfortunate position
of having to comfort someone
with melanoma,
here is a list of what not to say...

* "Well...what are the statistics?"

* "I heard something bad about you. Is it true?"

* "The good news is, it won't kill you...right now." (Said by a doctor.)

* "You're going to be fine.

* "My brother died of melanoma."

* "My uncle died of melanoma."

*"My best friends dog-cat-friend died of melanoma."

       The point being...someone dying of melanoma is not exactly uplifting to a "melanoma warrior."

"I want to look hot now...I'll worry about the rest later."

* "My family has a history of skin cancer but...."

* "Well, you don't look sick."
* "I'm going tanning."

* "At least it is just skin cancer...Can't they just remove it?"

*There are numerous comments that have been made; however, I am forgetful. Dear friends, remind me of the comments!

I know that most people are at a total loss for what to say, but some of these things are unkind. If you have a friend fighting against melanoma, please think before you say anything at all. I greatly appreciate the support...but sometimes I need exactly that---support.

Melanoma is a lifetime battle. It will never, ever truly go away. For the rest of our lives, we melanoma warriors will dread every CAT scan, every MRI, every swollen lymph node because we know that the chance of melanoma spreading is high.

Just please...think before you try to offer comfort. Sometimes you do more harm than good.

Tuesday, April 5, 2011

"I Don't See Anything Exciting..."

Well, I left the dermatologist with no new incisions yesterday! Dr. Cool Guy examined me, kept repeating, "you poor thing" and basically made me feel like my body looks as bad as it feels.

Have I mentioned I want to replace him?

I know he means no harm, but maybe I do hold a grudge against him....I found yesterday that I have little faith in him. I mean, he examines my rash--which is continuing to spread--and says it looks like it is getting better. If it is healing then how come my right side is now being affected by this very icky itchy rash?


At least I left there with only 12 scars. I have no desire to add any to the collection right now!

In happier news, I was introduced to a very nice young woman yesterday who has stage II melanoma. She has had trouble dealing with her scar since her surgery in January. She says our conversation helped her...I hope that is true!

I have spent today resting...I believe the exhaustion has finally hit me. Back to reading & resting!


Monday, April 4, 2011

3 Month Check-Up

So, the last time I saw Dr. Cool Guy was when he informed me I have melanoma. I had one itsy bitsy scar on my back from where he had removed the mole that changed my life. 3 months later, I am about to head off to see him again. I am sure he will be shocked to see the 9 new "beauty marks" I have added to the little tiny one he made.

My sister had an appointment with Dr. Cool Guy a few months ago and he expressed his own personal guilt about my situation. Cara said he looked like he could cry as he asked about me. He told her that he somehow feels like this was his fault. Maybe he meant that he did not prepare me for the shock we all had when the pathology report came back? I'm not sure. I do not blame him. He removed the mole that was suspicious, he did his job. None of us knew how that appointment would change my life. As Mr. Spots told me, no doctor, no matter how many times they have to do it, can ever enjoy giving a person such life altering news. comes with the territory.

I have to admit I am a tad bit nervous about this appointment. I assume this is how people feel before their 3 (or 6) month scans... Last time I saw him, he gave me the worst news  of my life. Now I feel like he will be knife happy...eager to take any thing off that looks the slightest bit suspicious. Although I agree with him, if it looks funky, remove it, I have just about had enough of knives, doctors, and new scars. 

At least he will be able to look at my fabulous rash and maybe stop it from spreading further down my body.....

Oh, the joys of "just" skin cancer, right?

Saturday, April 2, 2011


I thought I would take a break from all the boyfriend QT to post an update on my healing process.

All in all, I am doing much better than the last surgery. I know that this surgery was more intense; however, last time I was cut in 5 locations rather than 2. Last time I had to have a little butt push to get off the couch. This time I am moving around a little easier. I definitely notice an overall lack of strength. By the time I take a shower, I need a 2 hour nap. Showering is probably the most painful thing I have done so far. Washing my hair is pretty much a nightmare since I have trouble lifting my left arm that high. And having someone wash it for me? Well, that would be lovely...except for the fact that I am super sensitive on the right side of my head and face. My ear is very painful! Because of the nerves that were cut, there was quite a bit of damage. Some of the numbness and pain will go away with time. I sure hope the pain in my ear vanishes...soon...I am an earring whore! I will never feel pretty again if I can't wear earrings! ;-)

The rash is finally starting to heal. It is still bothering me but nothing like it was. And my little bullet holes, as I like to call them, are healing. Hopefully with the help of this Fluocinonide cream I will get rid of the rash soon. I am praying it does not leave a scar...You can still see where I had the rash around my arms following the last surgery.

So, what's next? Minus resting! I have an appointment in New York to see The Wizard, my oncologist, on April 22nd. He wanted to give me a few weeks before we start anything else. The appointment is to discuss the clinical trials that I am eligible for. If I decide to do the ipi trial (Which I will) it is possible I can receive the treatment in Charlotte, NC. I see the pros and cons of trading locations. At Sloan Kettering, I am already familiar with the area and the doctors. I like the center and the doctors. However, it is VERY expensive. For the week I was in New York, it was over $2,000 just for the hotel room. I have to do some research and talk things through with my Mom...She is the one who has been next to my side almost 24/7. The decision is honestly up to her. 

Well, I am pooped. I know that with time and rest my energy will return. I have to keep reminding myself it has only been a little over a week since my is OK to be lazy. 

When else will there be a time when it is acceptable to be lazy?!

Happy Saturday, folks. Do something fun!