Tuesday, May 31, 2011

Taste buds Gone Wacky!

Imagine this. You wake up in the morning, prepare your coffee and bagel, sit down to enjoy your breakfast, and when you take the first bite you realize you have made an onion bagel instead of your normal plain one. You throw out the onion bagel, check the packaging on the bagels, and see that it claims to be plain. Odd. They must have been a bad batch.

A few hours later, your Mom has made your favorite treat...chocolate chip cookies! As a girl who loves her cookies, you're thrilled with the idea of indulging. You bite into the cookie. Peanut butter! Why in the heck would Mom make peanut butter cookies! Peanut butter is on the dislike list right along with melanoma (OK, maybe I do not hate it that much...)

Again, hours later, you are enjoying lunch with your family. You question what kind of chips Mom put on the table to go with our sandwiches. "They are just plain." Well, why are they burning my tongue and tasting oddly similar to salt and vinegar?

Clearly my taste buds are confused.

I have done a little research, but I can't find any real proof that Ipi causes taste buds to go wacko; however, mine certainly have lost it. Although my lack of appetite will be a good dieting tool, I know I need to take care of my body. Eating is so boring when you can't truly taste what you are craving!

Besides the crazy taste buds, I have not been feeling so great the last two days. The best way to describe how I feel is to say it is like having the flu. My body aches. I get chills. My body is hot to touch, but no fever. (Even though it feels like I have one...Mom keeps making me check because to feel me, I feel like I do.) I am tired. I haven't gotten much sleep this weekend so I believe that could be responsible for my exhaustion. I took a long nap today and plan on resting all day tomorrow.

It has officially been 10 days since my first treatment. If I am going to see any symptoms, it is sometime around this time.

If you are friends with me on Facebook, you know that my personal life took a big hit this weekend. I don't feel ready to talk about it yet, but I am OK. Life is too short to be anything less than happy. I will remind myself of that often.

I hope everyone had a lovely Memorial Day weekend. I hope you remembered the reason for the holiday... and the sunscreen!

Solider Tribute

Friday, May 27, 2011

Don't Fry Day!

I have always enjoyed Memorial Day weekend. It has been a time for family, fun, and sun. This year things wil be a bit different for me. There will be fun in the sun; however, I will lather up with SPF, I will wear a hat if I am in direct sunlight, I will take extra precautions to make sure that I do not burn. Heck, I don't even want a tint of color. The sun scares me these days.

Does that mean I am hiding under a rock? Of course not. I will still go to the beach. I will have margarita's on the deck. I will enjoy long boat rides. Instead of trying for that "gorgeous" tan, I will keep myself safe while doing all of the things I enjoy.

I hope you all enjoy your Memorial Day weekend. Love on your family. Relax. And don't forget the sunscreen...

Let's make it a No Fry Weekend!

Thursday, May 26, 2011

Don't Lose Hope.

I was talking to my Grand Mother today when she mentioned that my Great Uncle sent her an article for me to read. He believed that I would find it encouraging. I randomly (or not so randomly, I guess, because what else do I do when I am bored?) logged onto Facebook and one of my fellow melanoma warriors had the article posted to her page.

It discusses a woman from Virginia who was told she only had 6-8 months to live, but due to the recent progression with clinical drugs for melanoma, she is still here. Of course she is not cured of melanoma, but the drug has given her a life again.

Read article here: http://www.bloomberg.com/news/2011-05-25/roche-leads-deadly-skin-cancer-turnaround-as-dozen-drugs-coming.html

I chuckled when I read that the president of the American Society of Clinical Oncology said, "“Being a melanoma doctor is not unlike being a Chicago Cubs fan." I know many of my doctors would agree. It is obviously frustrating to them to see such a deadly disease remain incurable. BUT, thanks to all of the researchers, volunteers, and doctors, progress is happening! The president said, " “This is a sea change for the melanoma guys.” A sea of change that we so desperately need.

My Great Uncle was right about the article, by the way, it encouraged me. Slowly, there are becoming more options for us melanoma warriors whereas there used to be only 2.

Protect your skin, friends.

And my dear melanoma warriors, don't give up the fight.

Wednesday, May 25, 2011

"Don't Panic."

When I first started writing this blog after being diagnosed with stage III melanoma in January, I discussed needing reassuring doctors. I am the type of (needy?) person who needs to be told the truth in a positive manner. When a doctor stares at an ultrasound picture, shakes her head, and says, "I don't know" I assume I am going to croak tomorrow.

Dramatic, I know.

When my good ol' friend The Wizard called me today, I had prepared myself for bad news. Being the "glass is half full" type of doctor, I should have known he would reassure me that I am not going anywhere anytime soon. He did just that. He automatically says, "So, about your ultrasounds, they still look fine to me." He agreed that there is a need for an ultrasound/needle biopsy, but that he is still not overly concerned. He said, "there is no need to panic." That is what I needed to hear because I was (not-so-secretly) panicking.

I shared a brief summary of the experience I had with Dr. Lee and The Wizard politely me, "next time, no panicking. You call me instead." Have I mentioned that I adore this guy? He won major brownie points with me today. The Wizard explained again that thyroid nodules in young women are common and usually benign. He also stressed that I had 2 major surgeries within 2 months of each other. There has been a lot of trauma to the upper part of my body. I am still recovering. In other words, BREATHE, calm down, and give my body a chance to heal. Because I still have the swelling issue above my collarbone, under the left neck incision, he believes the "concerning area" could be lymph nodes overcompensating.  Since I do not have lymph nodes in my left armpit or the right side of my neck due to the most recent surgery, this theory makes sense to me.

We also discussed my first day in the "Chemo Suite." I asked him questions about my dropping blood pressure. He said that the nurses tend to be paranoid during infusions because they want to stop any complications before it becomes a huge problem. He said because I am "young and thin" that it is normal for me to have a lower blood pressure, and it may have continued to drop just because I was comfortable. I did list how I have been feeling since the infusion. He said, "You do realize those are side effects of Ipi, right?" Oh, how I hope...

This phone call made me relax. I wonder if doctors realize how their attitude, tone of voice, and vocabulary can change an entire situation. I know I am not out of the woods yet, the biopsy still needs to be done, but I am not going to prepare for the worst. I know the possibilities, but I also have my faith. Sloan Kettering is taking such good care of me, why should I doubt them? If the biopsy shows something unattractive, they will tackle it head on. I know that.

Yesterday, as I was spending time on my friend, The Treadmill, I was listening to my iPod, and Jason Mraz starts singing, "We will cure this dirty old disease. If you've got the poison, I've got the remedy.
The remedy is the experience. This is a dangerous liaison. I say the comedy is that it's serious. This is a strange enough new play on words...I won't worry my life away..I won't worry my life away..." Isn't it odd how a random song can play and it is somehow fits perfectly into your situation? My buddy Sean, from PolyChrome, sings this song every once in a while, but it never registered just how perfectly it fits into my life. Oh, music... But Jason has the right attitude, I should not worry my life away.

As my sister reminded me, I have melanoma. But, I am not melanoma. I am made up of so much more than this dirty, unpredictable cancer. So, like Jason, I won't worry my life away.

PS) I did not realize how adorable Jason Mraz is until watching the video...Cutie!

Jason Mraz: The Remedy (I Won't Worry.)

Tuesday, May 24, 2011

Casually Waiting

As I am patiently waiting to hear from The Wizard about the ultrasound on Friday and the need for the biopsy, I am also trying to figure out if I received the drug or the placebo. I have been in a bit of a funk...if overall grumpiness & irritability are side effects of Ipi, well, I got it! ;-) Unfortunately, I think the blues come from the melanoma diagnosis itself. 

So, how am I feeling? I actually feel OK. I feel achy like I have worked out too hard, and I feel sleepy. Yesterday I slept the majority of the day, but I desperately needed it. When I casually rolled out of bed at 4:30, I felt a tiny bit better. It amused me that I was tired again at 10:00 considering I had not been awake very long. Oh well. My body needed rest, so rest I did. My eyes have been itchy; however, it is allergy season so I am not trying to read into that. I have had a headache, but I am stressed...My skin has felt itchy, but it could also all be in my head. I want the drug, so I want the side effects. We will see what happens in the next few days. The Wizard said that most side effects hit younger people in about 10 days. We will see...........!

I know I should be anxious to talk to the doctor and get the biopsy, but I am not. I know that is wrong...but I have family coming into town next week, I want to enjoy them! I don't want to have to go to NYC and have a needle jammed into the side of my neck. I think I will wait a few days. If he has not called me before then, I will call him. I know I should not avoid it, but I want to...just for a little while.

I am not going to let myself sleep the day away. I still need to unpack, organize, and take care of some things that should have been done on Saturday when I got home. Once all of that is taken care of, if I need, I will nap! ;-)

Happy Tuesday!

Sunday, May 22, 2011

"Live a Little, Love a Lot."

"Step back, smell the rose
Feel the sand between your toes
Unplug, unwind
Step out in the sunshine...
Live a little,
Love a lot."
~Kenny Chesney

That is exactly what I did this weekend... After Friday, I needed some time to think, to process the latest news, and to rest. I needed some time to put a positive attitude back into place. Maybe I was caught off guard by the less than stellar ultrasound results, maybe I knew all along, I don't know. Regardless, hearing bad news is never easy.

Last night, after hearing I had a "woe is me" attitude, I figured I would stop moping around, get dressed, and go out for a while. I did, and I am very grateful to the friend who listened to me for hours. Keith Urban is right when he sings, "Everybody needs somebody sometimes." Although our problems are different, we were able to talk to each other and get a new perspective on things. It definitely opened my eyes to quite a few things.

Today I woke up feeling a tad bit blue. It was beautiful outside, everyone was heading to the beach, and I briefly considered going myself until I realized all of the luggage I would have to take with me: protective clothes, sunscreen, umbrella, chair, hat, sunglasses, cooler, etc. No-thank-you. Way too much work! For a few minutes, while still in bed, I wished for my old carefree lifestyle. 

Then I rolled over and moved on with my day.

I visited with Gran & Pop today. Pop had a bone to pick with me today...I tend to downplay things to Pop when I talk to him on the phone after receiving bad news. I tell him the truth, but I don't put the emotional part into it. Then he gets online, reads my blog, and becomes upset because he feels like I am keeping things from him. Gran and I tried to make him understand that I am not intentionally hiding things from him. It's just, sometimes things get too scary, and the last thing I need is for someone I love to become emotional over the latest scare. Someone else becoming visibly upset does me no good. And let's face it, I am a writer, not a talker! (At least not when it comes to the scary monster melanoma.) Love you, Poppy & Granny! :-)

After hanging with the G-Parents, I headed over to Assateague. 3 hours of talking, walking, and just staring at the ocean was good for my soul. And my goodness, I am exhausted now! Something tells me that when it is time for bed, I will sleep deeply.

One of my melanoma buddies wrote to me, "Keep moving forward and keep reminding yourself that you are fighting for your life. It’s ok to be selfish and self absorbed right now. You have to be and I hope you are. It’s time to circle the wagons and decide who you want inside your little circle." That is what I am doing right now. I need to redirect my energy to my health instead of focusing on things I cannot control. 

It is time to put my thinking cap on and find out what I really want out of this life that is mine...

Friday, May 20, 2011

The Sun Will Come Out Tomorrow

Have I mentioned lately
that melanoma really,
freaking sucks?

I can normally spin things in a positive tone, but I am physically and emotionally exhausted tonight. If you catch me sounding bitter and sad, tonight I am. I hate cancer. I hate, hate, hate it.

Let me explain my grumpy attitude...

We headed over to Sloan Kettering at 9:00 this morning to have my labs drawn. Although my appointment was not until later, they needed my morning levels. It started off well enough. The nurse called me into the room right away, I did not even have time to sit down. I liked not having to wait! She took my blood pressure---which was normal---and my temperature which was also normal. Then the little lady (and boy, she is TINY!) sits me down in the chair to draw the blood out of me. No one warned me just how much blood she was going to take. As she pulled tube after tube out of the drawer, I started to panic. Was that all for me? 16 tubes for MY blood? What are they? Vampires?  The poor vein she used in my hand did perfectly until tube number 12. It had had enough and refused to give her any more. In goes another needle to another vein. Ouch. Talk about feeling like a zombie...I walked out of the Outpatient Center thinking I was either going to fall asleep or simply pass out in the middle of the road. Loopy! Once I had some food and juice, I felt a little better. 

Since we had some extra time, we headed over to Barnes & Noble. As always, being surrounded by books made me relax. I felt a little less zombie like after rooming around the books. (PS, I am reading Elizabeth Gilbert's new book. Has anyone read it?) 

The meeting with The Wizard was quick and easy. He did notice my left swollen shoulder as soon as he started to examine me. I told him that I have been having pain and that the swelling began on Monday. He told me that we should not freak out yet, that my body has been through so many surgeries and trauma. He told me to give it a few weeks since I just had the CT Scan on May 9th and everything was fine. 

Then it was time for the ultrasound to determine if we should worry about the thyroid nodule that turned up on the last neck CT scan. I knew not long into the ultrasound that something was not right. The tech's mood changed. She continued to focus in just one area. I have had my fair share of ultrasounds, I knew this one was lasting a while. When she excused herself to have the radiologist take a look, she told me to relax. I laid there for about 15 minutes and then in walks a woman. "Hi, Ms. Price. I am Dr. Lee." Warning bells....a doctor came to examine me? After she started to do the ultrasound herself, I said, "So, I am assuming you saw something?" She said, "Yes, I see two concerning things." She told me that she sees the thyroid nodule that they were concerned about, but she also sees "something." She said she could not get a clear enough picture to determine if it is a tumor or if it is just a group of lymph nodes. She continued to examine me for a few extra minutes. I silently laid there, holding back tears. I was grateful that if Dr. Lee saw the few tears that sneaked out, she did not mention it. So, what does this mean? It means I get to be jabbed in the side of my neck with some needles to find out for sure what is going on. It will give us a definite answer. Dr. Lee is supposed to talk to my oncologist, The Wizard, and get back to me next week. Oh, reminder..I did have one lymph node tested from the left side of my neck back in January. It was negative for melanoma. Obviously something is going on, let's just hope it is nothing major. Dr. Lee was not exactly the most uplifting or reassuring doctor I have seen at Sloan Kettering. In fact, she was the opposite. However, I am going to try to cling to my faith...(Please pray it is not a tumor. Please....)

Did I mention that the ultrasound was completely uncomfortable? I am still recovering from surgery on both sides of my neck. My nerves are still recovering from the trauma. It hurts for my boyfriend to touch my neck. Think about a technician who has no sympathy! It was painful. I am very uncomfortable tonight. Very.

Because of the ultrasound discovery, I was unsure if I would still be allowed to begin the trial. Luckily, I was! Although there were no super handsome male nurses, I had a wonderful nurse named Bridget. She was not pushy. She wasn't overly excited. She was mellow, sweet without being too sweet, and quiet. She was my favorite type of nurse. 

The view from my "Chemo Suite."

Because my veins were unhappy from this morning, they did not want to cooperate. Apparently if you warm up the arm, your veins become easier to access. 

That seemed to work! Once she got the IV in me, the 90 minutes began to tick. Every 30 minutes, the nurse came back into my little suite to check my vitals. Each time she came to see me, my blood pressure was decreasing. When it got down to 103/54, the nurse called The Wizard's nurse, Mary. Mary told Bridget that she was not "too" worried, to give me something to drink, and continue to monitor me. Poor Bridget, I think she thought I was lying to her about feeling fine. Sure, I still felt lightheaded, had a bit of a headache, and was exhausted, but those 16 tubes of blood kicked my booty! Bridget just kept saying, "are you sure you are feeling OK?"

After the 90 minute infusion, I had to be observed for an hour. My blood pressure continued to rise back to normal. Soooooooooo weird....

At 6:00 tonight I was finally free to leave. I have never been so happy to see a hotel room.

Today was a hard day on me...physically & emotionally. It reminded me that things can change in moments. I am going to pray, hope and wish that the biopsy will calm my fears. Until then, I am going to regain a positive attitude. 

After all, the sun will come out tomorrow.

Thursday, May 19, 2011

"Oh! Oh!"

Sometimes I should not be let out in the public. Today was one of those days. I woke up this morning, got myself ready, and Mr. Spots took me to the airport. Being the best boyfriend ever, he came inside  (against my demands of him going home to rest) to spend a few extra minutes with me. As I was checking in, I was informed that my flight was delayed. Bummer. So, Mr. Spots and I hung out in the restaurant for a bit, chit chatting, enjoying our last few minutes together. I figured I would head on back to my gate close to my flight time just in case they decided to leave on time. Good thing I did! After being rushed through security, forgetting to remove my shoes, and being yelled at for forgetting said shoes, I headed towards the gate looking forward to a few minutes to organize myself before boarding the flight. As soon as I sit down I hear, "We are now boarding Zone 2." Wait...It's only 10:10. They said my flight was delayed until 11:15! Good thing I left Mr. Spots when I did...

I have been on some small planes before, but holy cow...this plane was unusually small. I had to put my feet on my laptop case and purse. The plane was definitely made when people were much smaller than they are these days... Flying was wonderful. A 90 minute flight was much more pleasurable than the 5+ hour car ride. I was concerned how I would feel after flying. I feel fine. I am still having the shoulder pain I discussed with Dr. Glinda, my surgeon, yesterday. Mom said it looks like fluid. I will have The Wizard take a look tomorrow...

Amazing news in terms of spreading awareness! My sorority, Alpha Sigma Tau, has a national magazine called THE CREST. The editor, a lovely lady, emailed me yesterday asking if I could put together an article by this weekend. She said that she thought my story was something our Sisterhood needs to hear. I could not agree more! I spent last night quickly writing an article for the magazine. It sure is hard to say everything I want to say in one article. Thank God for this blog... ;-)

Back to this latest trip, I met Mom at the hotel. We are staying again in Jersey City since the hotel prices are significantly cheaper than in the City. Plus I sleep better...Maybe I am not cut out to be a city girl after all! I value my quiet time a little too much. We were too tired to go into the City tonight so we decided to take the train down to Hoboken. Mom had been talking about Carlo's Bake Shop for the past few trips, so we made the decision to finally go. Wow, what a busy bakery! 

Mom & I decided on red velvet cupcakes, carrot cake cupcakes, and 2 cookies. I have had one of the red velvet cupcakes and here's my verdict: Cake Boss is famous for a good reason. They are DELICIOUS! Nom...nom...nom! Lisa, one of the sister's, was at the bakery, and came out to thank everyone for coming in. She was very nice...very normal. 

Mom and I decided to head back to the hotel since tomorrow is going to be such a hectic day. There we are, standing on a side street, waiting for traffic to clear, when I make eye contact with a man on the other side of the street. He smiles. I smile. And then it hits me....

"Oh! Oh! Oh!" I point over him. He raises his arms like, "Yeah, you got me...it's me!" Mom sees where I am pointing and says, "Oh my God! We were just at your bakery. We hoped to see you." Buddy, the Cake Boss, walks on over to us, thanks us for our business, and agrees to pose for a picture. (Yeah, we were those people...) Mom was just going to take the picture, but he insisted his friend would take the picture and the three of us could all be in it. 

Cake Boss!

I have nothing but kind words for him. He could have easily ignored us, but he didn't. You're a nice guy, Buddy! ;-) (And I was a total starstruck ditz! Sorry, I normally can make words! I swear!)

After we walked away, Mom & I looked at each other and began to laugh. If anything, we expected to see Buddy at the bakery, not on the side of a side street! How random. It made it even more fun.

So, tomorrow..........here's the updated schedule for those interested:

I have to be at the outpatient center by 10:30 for some blood work. They need my morning levels before I can start the trial. Then the schedule is the same. 12:15 appointment with my oncologist, The Wizard, 1:00 ultrasound (nervous!) 2:00 Day 1 in the "Chemo Suite." I expect I will be there until 5 PM or so. It is going to be a very long day for us. 

The messages, comments, texts, and phone calls I have received today have meant so much to me. I am nervous, yes, but I know that I am in the care of awesome doctor's who will make sure we make the right decisions for my body. I am confident in that. 

I can do this. After all, I am a fighter. 

Wear sunscreen. XO

Leavin' on a jet plane!

Well, it is time to begin another journey. It is hard to believe the Yervoy trial will begin on Friday! I feel like I was just there, deciding to enroll in it. I am going to have faith that this was the best decision for me...even if I do get the placebo!

My schedule for the next couple of days is a tad bit busy.

Tomorrow: Fly to New York.

Friday: 12:15 meeting with The Wizard to make sure I am healthy enough to begin treatment. I also need to talk to him about this new knot on the top of my shoulder, located directly under my scar. Fluid? Lymph node? Regardless of what it is, it is very painful. Very painful.

1:00 Ultrasound to see what is going on with the mysterious thyroid nodule. Pray it is nothing serious.

2:00 day one in the "Chemo Suite." The infusion lasts 90 minutes, and then I am observed for an hour afterwards. It will be a long day.

As you read this post, I am asking you to send good juju to my new friend Julie. She has her full lymph node dissection tomorrow morning in New York. Her surgeon is actually my surgeon, Dr. Glinda! I know she will take special care of Julie, but pray her nodes are negative for melanoma and that she has a speedy recovery. People keep reminding me that prayers work, and I am seeing evidence of that.

I am a bit nervous tonight...anxious.

Let's get the show on the road & kick some melanoma ass!

Tuesday, May 17, 2011

"Karaoke for a Kure."

I have two last nights in Roanoke before I begin the Yervoy trial in NYC. Since Mr. Spots is working, my sister and I planned to spend some time together. She had already agreed to attend a function downtown called "Karaoke for a Kure" which is a local fundraiser for Relay for Life. (And yes, they spell Cure "Kure" for this event. It is not a typo.)  Apparently last year the event was a huge hit, sold tons of shirts that had the expression "I <3 Boobs (that's why I'm fighting to save them.)"

It got me thinking...what about all of the other cancers who do not have fun slogans to help promote them? Think about lymphoma...My friend, who has lymphoma, has said quite a few times that she wishes there was a fun way to promote awareness about lymphoma. "Pay attention to your lymph nodes"  is not nearly as catchy as "Save the ta-ta's!" 

Breast cancer gets a lot of attention because who does not love boobs? I mean, really? We all do. Look at the football players and their pink gear, the cool shirts you see, there is breast cancer awareness gear EVERYWHERE. The grocery store here in town even carries special pink socks that are covered in pink ribbons.

Call me bitter, but if melanoma had half as much money going towards it as breast cancer, maybe we would be further along in finding a cure. I remember when I was first diagnosed, numerous doctors told me that the tricky thing about melanoma is there is no true standard protocol like there is with breast cancer. Right now, it's a "well, this might work. Or how about we just wait 6 months and see what happens?" I guess I am jealous that there is more proof of what works against breast cancer and what does not...I think my doctors feel the same way. The lack of information is frustrating to everyone.

The positive side of this high awareness is if we continue to support breast cancer, maybe they will find a true cure. I know too many people who have been affected by this horrible cancer. No matter how much awareness breast cancer gets, you can't change the fact that it continues to devastate families. It ruins lives. It takes mothers, sisters, friends through not only a battle against the cancer, but a battle against themselves. Society loves boobs. What happens when cancer takes them away from a woman? It adds a whole other stress factor: a loss of confidence.

Yes, I may be fighting my battle against melanoma, but others around me are fighting for their lives against breast cancer, lymphoma, lung cancer, etc. Research occurs because of money. If I have the opportunity to add a few dollars towards a good cause, I will.

Sunday, May 15, 2011

Sunday Funday

Today was a fun day...We headed over to see my baby sister and her boyfriend. We thought we would just go for a visit; however, it turned into a full day event. We had the Kiddo today who definitely needed to burn off some energy so we decided to play tennis. Without thinking it through, I played as well. Note to folks who have recently had full lymph node dissections: DO NOT PLAY TENNIS! Wowzers...my arm is still throbbing.

The kiddo made me an extremely proud lady today. He reminded me to put sunscreen on him! Apparently his Step Daddy always puts sunscreen on him. Woo hoo! Beginning sun safety at an early age is the way to go. I told Mr. Spots today that the kiddo won't be likely to get melanoma under my watch. He is a blonde haired, blue eyed baby...he needs to be careful anyway.

After tennis we decided to cook out.

Or I should say, the guys cooked the majority of the food. Baby sister did the rest. I watched. (It is safer for all of us....)

I am becoming pretty whiny about leaving on Thursday. My flight leaves around 10:30 and I know I will be a sad lady. I am going to force myself to stop stressing it. Dad told me yesterday that God has a plan for all of us...I suppose I will see what he has planned for me next soon enough.

I have had the pleasure of talking to another young melanoma warrior lately. She was just diagnosed in March, and is just beginning her journey. She asked me an interesting question today: How did I decide to let everyone in on my fight against melanoma? Have I found the support helpful or overwhelming? 

"Talking" about my experience has been the best type of therapy for me. I put talking in quotation marks because I normally type about it either on the blog or on Facebook. Actually having a conversation about it with people makes me jittery. Of course it all depends on the situation. If you come up to me in a restaurant and want to discuss it, beware....I will quickly change the subject because I never know exactly what to say. I feel like it is so much easier to tell people I am OK and move on. Do they really want to hear the truth? I like to look positive and cheerful instead. They said on Scrubs once, "It's all about hiding the crazy, and acting like the most confident girl in the room." Ha! I know all about that lately! 

So, "talking" online has helped me unleash the scary thoughts. I decided to share my experience because I never thought it could happen to me. So many of my friends use the tanning beds, pour the tanning oil on their legs, and ignore the sunblock, I used to be one of them, so I felt like they needed to see that it could happen to someone their own age. It is happening to me. Melanoma is something we have the opportunity to prevent...Shouldn't we try? As I have said from the start of this blog, if my story stops someone from putting themselves in danger, I know it has been worth it. I have done my job. When I hear stories about how someone called and canceled their tanning membership, when I hear about appointments with dermatologists, and spray tan salons, I see what a difference sharing my story is making. Some may question why I put my personal thoughts and experiences for the world to see, but that is why. You can see that it is so much more than "just" skin cancer...It affects every little part of my life. It causes me to take my life not day by day, but moment by moment.

Melanoma is REAL. 

Ugly. Painful. And terrifying....very, very terrifying.

But...it has taught me a lot about myself. I found an inner strength I did not know I had. I can say I have a more general idea of what I want out of life (more on that later.) It has opened my eyes to an amazing support system. For that, I am grateful.

I hope everyone else enjoyed their Sunday...and my goodness! Wear your sunscreen!!

XOXO, friends.

Saturday, May 14, 2011

Love. Trust. Sacrifice.

I am curled up on the couch, the kiddo is between Mr. Spots and I, and we are watching a Disney movie. This is the happiness I have always wanted. Although late nights at crowded bars are fun every once in a while, this is when I am the happiest...home with 'my' guys.

Yesterday was a big day. Mr. Spots graduated from college!

No turning back now!

He is very proud of his Daddy!

The Kiddo always has a way of making good day
even better.

As the boys are absorbed in the movie, I am watching them. This Saturday is the last lazy Saturday night we will have together for a while...possibly for 12 very long weeks. Because of the treatments in New York I am about to begin, I will be spending the summer with my parents 6 hours from here. It is hard to imagine living away from "home" for 3 months, but with the cost of gas, with the uncertainty of how I am going to feel, with the exhaustion that comes with the constant traveling, etc, we decided it would be best for me to stay on the Shore. Of course I am excited for the extra time to be with my family, but my life is in Roanoke now. My life is curled up on the couch next to me.

I am almost scared to spend 3 months away...I know I should have trust that our relationship is strong enough to handle the long distance, but we have already been through so much. The whole "Cancer" part of this is hard enough, being 6 hours apart for 3 months will not help our relationship. I guess what bugs me is that I have finally found someone I want to spend a great deal of my time with, I am finally happier than I could have imagined, and my life has become one hectic nightmare.

If anyone cares to wake me up from this horrible dream, I would appreciate it.

As I sit here looking at the loves of my life, I know that the sacrifice of giving up 3 months is absolutely nothing in the long scheme of things. Maybe it is a test. (As if we haven't been tested enough lately!) I am using the next 3 months of my life to try to guarantee many more years of good health. I know military families that sacrifice years to provide a better life for their family. I feel silly being worried about 3 months, but how can I not have fear? Mr. Spots loves me, I know, but I know this is not the life he pictured for himself. I guess I am feeling a bit insecure lately. I have a fear of what the future will bring. This is another reason why people kindly remind us to take things moment by moment. 

No matter what the future brings for our relationship, I will know that although life has given us a lot of hurdles, Mr. Spots and I have a very special type of love...morbid jokes and all.

Mr. Spots & the City!

Since today is a special day for Mr. Spots--graduation!!--I figured I would share some pictures of our quick trip to NYC last weekend. He had never been before so we were so excited to show around our other home. (I mean, really...it is becoming that!)

Because of our late start, we arrived to New Jersey around 6 PM. Mom, yet again, found us a great deal at The Westin. It is probably my favorite hotel. It was beautiful. The rooms were gorgeous. And the beds were heavenly...or maybe I was just THAT tired. 

We took the subway over to Herald Square with no problem. We explored Macy's, and headed over to Time's Square. You have to go to Time's Square at night! The lights...unbelievable! 

We then walked over to Rockefeller Center. I joked that I wanted to go ice skating, but the rink is gone! I guess I should have known...it is spring time! It was beautiful with all of the tables.

Mr. Spots has a slight obsession with Lego's so we walked over to the Lego store. Unfortunately, they were closed! 

As it was getting late, we decided to cut our site seeing short, grab a cab, and head over to Serendipity. I have been talking about the Frozen Hot Chocolate's since my first trip to MSK. As always, the cab rides in NYC are exciting...

And we ended evening with the famous Frozen Hot Chocolate....

Yum. Yum. Yum.

Wednesday, May 11, 2011

"Every Little Thing Gonna Be Alright..."

Bob Marley passed away 30 years ago...from melanoma!

In honor of Mr. Marley, I am going to use his positive thinking as I research the latest information I have received.

The Wizard called me first thing this morning with the results of the neck CT I had on Monday. Everything looks fine...except for a thyroid nodule. The Wizard asked a few questions, if I had ever had thyroid issues before--I have not--and said that we need to do an ultrasound to make sure the nodule is benign. He did stress that thyroid nodules are usually benign in women, but it is something for us to be concerned about and cannot be ignored. He made me feel more relaxed when he told me that there is no rush for the ultrasound. He will schedule it for when I come to New York for my treatment. Yay...another test for "And.Them." to try to fight! Oh well. I am very blessed that my doctors all take the extra step to make sure I am as healthy as possible. I am incredibly thankful for that.

I used my Google skills to research thyroid nodules. According to the Mayo Clinic--a highly respected facility--most thyroid nodules are benign, but you should seek medical attention if you have any of the following:

  • Sudden weight loss even though your appetite is normal or has increased
  • A pounding heart
  • Trouble sleeping
  • Muscle weakness
  • Nervousness or irritability
I had to giggle when I read these symptoms. I have cancer. Of course I am irritable! I am the poster child of emotional mood swings! Nervous? Yes, I get nervous over every swollen lymph node, every spike in temperature, any scan, any talk with someone in a lab coat, any day when I just do not feel "right." Muscle weakness? Duh. I am still recovering from 2 major surgeries. Trouble sleeping? Again, anyone with stress has trouble sleeping. A pounding heart? Only when nervous. *see above for when I am nervous.* Sudden weight loss even though appetite has increased? Well, yes. But not enough to make a huge difference.

So, thanks to Google, and Bob Marley, I am going to relax...I am going to pray, cross my fingers, and toes, and hope that the ultrasound will show a benign nodule.

"Singing don't worry about a thing, 
cause every little thing 
gonna be alright..."
~Bob Marley

Tuesday, May 10, 2011

"To Good Health."

2011 Seafood Fest,
Chincoteague, VA

Saturday was such a fun day. There is this annual festival on our little Island that allows friends & family to get together, drink adult beverages, dance to the tunes, and eat pounds of seafood. Boy, we did all of the above! (Notice...I was sun safe---big hat & all!)

It was so nice to see some old friendly faces. Before being diagnosed with melanoma, I rarely made the trip home to see anyone except my family and closest friends. It had been years since I had seen some of the folks I got to see on Saturday. I also got to meet a lot of new people! My Gran introduced me to one lovely lady who reads my blog at work each day. (I would mention you by name but I don't want to get you in trouble with the boss!) I had to giggle when she called the boyfriend Mr. Spots! It is a great reward knowing people read what I randomly type. ;-)

I also met another gorgeous lady who owns a hair salon in Maryland. She told me the great news that she is installing a spray tan system instead of tanning beds! Woo hoo! Think about all the people she is keeping out of a tanning bed! 

Then there was another lady who told me that due to my situation, she is "orange" thanks to the spray tan, but she has not stepped foot in the tanning bed! Hey, I am all for orange! Orange means fake tan...fake tan means no increased risk of melanoma! 

I loved hearing all of the stories about how people are learning from my experience. We are making a difference...finally!

It was definitely a day where we all let our hair down. I think we had been tense, worried about what the latest scans would show, but once The Wizard said everything looked good, it was the perfect excuse to celebrate! 

...And celebrate we did.

Monday, May 9, 2011

Alive & Well...

But I am super tired!

It is almost midnight and we are just now getting home from NYC. I had the neck CT today, no results.

I have a lot to blog about...just as soon as I catch up on sleep!


Friday, May 6, 2011

Answered Prayers

Thursday morning, after 4 hours of sleep (because who sleeps during scan week, really?!) Mom and I jumped in the car and started zooming towards New York City. Because of my early morning appointments we stayed in the City instead of New Jersey. I got to see my favorite doorman. He gave me a kiss on my cheek, asked how I have been feeling, and seemed amazed that I look so healthy. I guess the last time he saw me, I did have drains coming out of me...He looked me up and down, looked confused, and said, "you look perfect!" Yay! I don't look like the dirty (hello, 4 days not being allowed to shower...) girl with multiple drains coming out of her. Improvement!

Because of Mom's awesome City driving skills, we made it to the City a little after 1:00, and decided to jump on the subway to go down to the World Trade Center. I knew President Obama had been down there earlier, and I had heard Anderson Cooper had been broadcasting, so I was a bit nosy. Really, I wanted to see the Silver Fox in action.

lots of news crews!
Sadly, I didn't see Anderson...

 Down near World Trade Center.

I bought a sun safety hat.
Do you have your hat ready?!!
 Cool Converse display!


It should come as no surprise that the library
is one of my absolute favorite places in the City.

After 6 hours walking around the City, exploring Soho a little more, etc, Mom & I headed back to the hotel. We were both exhausted. I have to admit, if you need to clear your head, head to New York City. I felt a lot better last night than I had yesterday morning. The City is the perfect distraction!

There used to be early mornings where I would get home around 6:00. 
In following the trend of my "party girl" life style, I had to be at Memorial Sloan Kettering at 7:40 this morning for my cherry flavored cocktail. Yum, yum. I used my college skills and chugged down the delicious drink in about 20 minutes. Go me! (If anyone feels the urge to invent a scan juice that is not disgusting, all of us will appreciate it.)

While waiting to go back for my scan, there was an older gentleman beginning to drink his cocktail. He was probably in his 70's, from Greece, could not speak very good English, was scheduled for a scan then chemo, but he was happy. He was smiling, laughing, and enjoying the time with his family.  You know I have a weakness for cute old men, but he won my heart. Seeing his positive attitude made me relax. It is all about the attitude...

After my CT Scan & Brain MRI, I rushed over to the Outpatient Center for the meeting with The Wizard's Research Nurse. The Wizard walked in to "say hi" and gave me the scan results...


And to answer the question that was finally asked (I guess things were too serious the last time I had the brain MRI...) Yes, they found my brain! And despite some of my questionable decisions, it works!
I am still Stage III. Who could have imagined I would be thrilled over that? But, I am!

All of the prayers you have sent me have paid off! I am beyond grateful. The Wizard said this appointment is what he compares to a wellness visit for babies. I told him I would be thrilled if we can continue to have many more "wellness appointments."

I still have to have another scan on Monday to verify that my neck is all A-OK, but I am going to stay positive. It has been working so far.

This weekend is dedicated to family, love, and friends. Mom, my Step-Dad, and Mr. Spots and I are heading back to NYC on Sunday. Mr. Spots has never been so I am so excited to experience his first trip with him.

Since this Sunday is Mother's Day, I want to say--and I will say it again--I am incredibly lucky to have such an amazing Mom. She may not agree with every decision I make, but she always supports me. I have made some world class mistakes, but she is always there to pick up the pieces. Mom & I have always been close, but melanoma has brought us closer. It has allowed me to spend more time with her than I have in the last 5 1/2 years. Some would say spending 24/7 with their parents would drive them insane...And yes, sometimes we get on each others nerves...We wouldn't be human if we didn't drive each other nuts occasionally! 
I am only 24, I am still young, but Mom has let me take full control over my medical care. She gives me information, provides me with research to support her feelings towards something, but she makes it clear that any decision regarding my health is ultimately up to me. She may not be the one receiving surgery, she may not be the person feeling the needles in her arms, but I know this melanoma crap affects her just as much as it does me--just in another way. As other mother's tell me, you can't replace the relationship a mother & daughter have. I feel very blessed to be able to call my Mom my very best friend.

I think the caregivers of Cancer Patients
deserve a special reward...
They are the ones that tell us we're beautiful--drains & all,
the ones who help us shower when it's absolutely impossible,
the ones who drive us back and forth to appointments,
the ones who celebrate each good lab report,
and holds us when it all becomes too much.
The caregivers are the ones who 
give up their own lives
to guarantee we have a chance of living

Thank you, Momma.
I love you...to the moon & back.

Wednesday, May 4, 2011

Family....& Hope.

"There have been so many exciting new treatments discovered over the past few years, but we can’t forget this — there’s no substitute for hope. And when families stick together, hope stays strong. 
Fighting cancer requires medicine and faith — faith believing in something deeply and certainly, without a single doubt. The fear of losing control is dangerous as the disease itself. Fear keeps us doubting instead of hoping. Looking down instead of up." ~Brothers & Sisters

Even though Roanoke is truly becoming my home, I always feel so safe when I reach the Eastern Shore. My family, which includes Mr. Spots & his family, is my safe harbor. Even on the bad days, even without saying a word, they keep me going. They give me hope.

No matter how old you get, no matter how far away you move, there is no place like home.

As I head to New York City for my early Friday morning scans, I am going to have hope. I am going to believe that I am still "NED." (No Evidence of Disease.) Of course I am nervous...One little spot on my lung or liver could change everything. However, I keep being reminded that positive thinking can increase positive results. Soooooooooo.... I am thinking about positive, clean, perfect scans! 

Tomorrow Mom & I are going to leave early so that we can enjoy the City. Cinco de mayo in NYC? I am sure it could be interesting! My "cocktail hour" will begin at 7:40 in the morning Friday...yes, I will be "drinking" while you are all beginning your hangover from Thursday! ;-)

If you have a minute, please send some good juju my way for healthy, clean scans. Please?

I will post the results as soon as I know.

XO, my friends.

Tuesday, May 3, 2011

A Message to My 16-year Old Self

I am not a huge Youtube fan. I am not sure I have ever shared a Youtube video before; however, this one is special. This is, by far, the most powerful explanation of melanoma. It gave me chills. It made me cry. It made me watch it over again.

Please take a few minutes to watch this. Please do what they ask you...share it.

A Message to My 16-year Old Self

Monday, May 2, 2011

The Life Of A Melanoma Lady...

is a very busy one. It is time to begin living out of a suitcase for the next four months. Here is my updated schedule:

Tomorrow I will make the 6 hour drive to rejoin my family on the Eastern Shore of VA.

Thursday, 5/5/2011, Mom & I will head back to NYC for updated scans. I have learned that "Scanxiety" is a real thing. My "C" buddies have often discussed how nervous they get prior to CT scans. I have never had enough time to get truly nervous. The doctors have been in the habit of seeing me for my appointment, and then sending me upstairs for the scans. It isn't exactly enough time to get worried! I have gotten a little comfortable with the idea of showing "No Evidence of Disease." How will I handle the news if the scans show something suspicious? I know, I know. I should have positive thoughts. But let's face it, it is to be expected that I would be nervous. The recurrence rate of melanoma is extremely high...I am definitely the type of person who prepares for the worst, but hopes for the best.

So, on Friday morning I have to be at MSK at 7:40 AM to drink my yummy cocktail for the CT scan. Isn't it a bit early for cocktails, doc? Goodness. Directly following that scan, I am off for the MRI of my brain. At 11:00 am I meet with The Wizard's nurse to hear the results of these scans and to prepare for my first treatment on May 20th.

Friday evening we will return to the ESVA where we will meet Mr. Spots, my baby sister & her boyfriend. They are all coming in for the annual Seafood Festival. Seafood, good friends, and beer....Who can complain?

Sunday afternoon Mr. Spots, Mom & I are heading back to NYC. The Wizard ordered a "special" CT scan of my neck. I just recently found out. I am a bit nervous why we are doing this scan...I am unsure why he believes I need it, but I am thinking it is just a post-op scan. I have to give Memorial Sloan Kettering Cancer Center credit---they are thorough. This is what we pay big bucks for, that's for sure. I never feel neglected, thank God. If you can't put your trust in your doctors, why go to them? I am very lucky.

Tuesday I will return to Roanoke because Mr. Spots graduates on Friday! It is a big day for him and there is no place I would rather be. He has supported me all year, it is finally my time to support him. Now let's hope he finds his dream job!

After celebrating Mr. Spots, I will return to NYC for my first treatment on May 20th. One of my Melanoma Warriors emailed me saying, " Don't take it wrong but I hope you get swarmed with side effects. No too bad though of course." Why would someone wish I get slammed with side effects? It means I am actually receiving the drug! Either way, I will be at peace with my decision for enrolling in the ipi trial.

OK. It is way past my bedtime...Mr. Spots and I went to see Water For Elephants tonight. It was almost as good as the book! Read the book then go see it.

Night, friends. Say a special thought for a fellow melanoma warrior in Florida. He gets his scan results tomorrow. He is stage III C and has a beautiful family he needs to watch grow old.

"Written by Chelsea Price."

I got published!

Not long after being diagnosed with Stage III melanoma, I emailed Roanoke's women's regional magazine, Bella, encouraging them to take special interest in melanoma in their May edition since May is known as Skin Cancer Awareness Month. I gave them a short summary of why melanoma awareness is important to me, and linked them to my blog. Later that same afternoon I received an email from their editor asking if I would like to contribute an article to Bella.

Sooooo, I did.

It was not my best article ever. I struggled with finding a way to say everything I needed to say without making it 100 pages long. How do you describe (at that time) the 2 most drastic, life altering months of your life in just a few words? Well, apparently they liked what I said because on Saturday afternoon I received a Facebook notification from one of my dear friends saying he and his beautiful Mom enjoyed reading my article in Bella.

I had been sick all morning on Saturday (who gets the stomach bug while having a horrible cold? this girl!) but after reading that notification, I looked at Mr. Spots, squealed, and ran to get the latest edition of Bella I had picked up the day before but had not gotten around to reading.

Mr. Spots yelled for me to come back, so I climbed into bed with the article, and we both flipped quickly through the magazine. In such a hurry, neither of us saw my article until the second time we looked. But, there it was....towards the back, yes, but they published the article in all of its glory.

I know it is just a local women's magazine; however, I am proud of myself. I am sharing my story, and I am doing exactly what I said I was going to do...spreading awareness. I want to thank the editors of Bella for publishing it. Maybe it will save a life.

So here's the article--in case you're curious. ;-)

I love New York City:
the lights,
the fashion,
the world class Memorial Sloan Kettering Cancer Center...

Let me start at the beginning. I am Chelsea, 23 years old, not a blond hair, blue eyed, sun-worshiper. Despite my age, despite my dark hair, despite my devotion to sunscreen, I am a warrior against Stage III Melanoma.
It all started innocently enough. I felt an unusual mole on my upper back, scheduled an appointment with a dermatologist—just to be safe—and I had the mole removed. Since the dermatologist felt confident there was no need to be concerned, I spent the next ten days without worries.

Fast forward ten days, I am sitting on the table, the nurse is removing my stitches, when the doctor walks into the room. All I hear is, “Malignant Melanoma...No, I wish I was joking.”

Wait. Did he just tell me I have cancer? He must be mistaken...Maybe it is not as serious as he is making it sound. Can't skin cancer be cured by the removal of a mole? I release a nervous laugh and ask him to repeat.

Verdict is still the same...Malignant Melanoma.

If you have ever-God forbid-been in the situation where you have two doctors standing in front of you, unwilling to make direct eye contact, giving you unwanted news, you know what it feels like when reality slams into you. The head doctor starts discussing my appointment with a surgeon who will operate to see if the cancer has spread to my lymph nodes. Radiation is mentioned, my ability to have children following radiation is discussed, treatment options are listed. All I can think is, “I am only 23 years old. How is this happening to me?”

Two weeks following that life changing appointment I am in the operating room preparing to have surgery in five different locations. Prior to a wide excision surgery and Sentinel Lymph Node Biopsy, a radiologist injects a dye into the original tumor site to see where the dye travels. I lit up in four separate areas: the left and right side of my neck, both armpits. Questioning the radiologist if the surgeon will actually operate in all four locations, she politely tells me, “You want him to operate, ma'am.”

So, he did. The surgeon removed lymph nodes from the four areas, and he also removed a large amount of skin surrounding the original tumor site. The week following surgery can be described as pure torture. Without use of either arm, I was fully dependent on my loved ones to bathe me, to feed me, to drug me.

One week later I received the dreaded call: the oncologist wanted to see me in his office. I had decided that if the oncologist simply called me, the news would be good. If he wanted to see me in the office, it was not going to be a pleasant appointment.

I was right.

Thankfully, the oncologist wasted no time telling me the pathology report. Out of four lymph node basins, two basins were definitely positive for melanoma, one was possibly positive, and one was negative.

The scariest part? The two lymph node basins that were positive are located on opposite sides of my body. Although that has been seen before, it is unusual.

Statistically, there was a 90% chance that melanoma would not be found in my lymph nodes. Had someone told me there was only a 10% chance that my lymph nodes would be positive, I would have confidently gone into surgery. I suppose I should be thankful no one shared that statistic with me...Can you imagine the let down?

So, melanoma in lymph nodes means what exactly? Well, it puts me at Stage III. The thing about melanoma that many people do not know is that it is a very aggressive and unpredictable disease. We know that it has the capability to spread internally at a fast rate, but we do not know if and when it will spread to my organs.

Unable to sit back and wait for the disease to 'off' me, I set up an appointment with Memorial Sloan Kettering Cancer Center in New York City. They are world known melanoma specialists. The frustrating part about melanoma for patients is that treatment is limited unless you are Stage IV. Hearing a world class oncologist tell me I am not sick 'enough' for the medication that is available was infuriating. Sure, I could do Interferon, but if you look at the side effects and the success rate, I find it to be unacceptable.

There are limited options for us Melanoma Warriors. Had I known the seriousness of melanoma, maybe I would not have used the tanning beds before proms and vacations, maybe I would have used a stronger sunscreen than SPF 35, maybe I would not be fighting viciously to save my life.

What do I do now? Next week I will undergo a crucial surgery to remove the remaining lymph nodes in my left armpit and the right side of my neck. This surgery, although difficult, will hopefully give me a peace of mind. If more lymph nodes are positive, I will be eligible for ipilimumab, a medication that will hopefully be FDA approved in the next month.

Besides being a real life lab rat, I am an emotional basket case. I have struggled with anger, with depression, with the sense of helplessness. Instead of giving into the dark side, I am using this experience to laugh more frequently, to write about things I do not have the guts to say, to share my experience with hopes that it will save another young person from going through the hell that has become my life. If I am going to fight this battle, I am going to smile, hold my head high, and embrace it.

Next time you head to the tanning bed, please stop and re-think. Lather your kids in sunscreen. Wear hats. Enjoy the sun--safely. Stop thinking it cannot happen to you. I am here, only 23 years old, to tell you that it can.