Hello From The Mountains!

I just wanted to post a quick hello. I am in Roanoke visiting Mr. Spots and my sister until tomorrow morning. I will be posting about my weekend and the upcoming Skype interview with the Skin Cancer Foundation that is scheduled for Tuesday.

Speaking of which, if anyone knows of a male who is under the age of 26 who would like to share his experience with melanoma, please email me. The Skin Cancer Foundation would love to hear his story. We need to make males aware of this unpredictable disease, too.

Speaking of this disease...I head to New York on Wednesday. I have my 3 month scans on Thursday, followed by a check up and results Friday morning. I am only a tad bit nervous...I feel so great, I am really enjoying having my life back, I pray nothing will change.

Anyway, I hope everyone had a safe & happy weekend. I look forward to blogging tomorrow evening!

Pony Land

One observation regarding the majority of the people who attended the pony swim on Chincoteague Island yesterday: They got burnt. I am not talking about a little pink after a long day in the sun. I am talking about the painful-hot-red-must-have-aloe-now kind of burnt. I wonder if they realize that it just takes one little burn...............

Anyway.

I picked up my niece yesterday from her Nana's. When I brought her back to our house, she asked, "Is it just the big kids going to see the ponies or are you going too, Grand Mommy?" Mom said, "No, it is just you and Aunt Chelly going." Lily got a huge smile on her face and hugged me. All night long, she kept telling people, "it's just the two of us!" It made me very thankful that I made the decision to do something special with just her. We needed some bonding time.

Girlfriend needs some sunglasses!

"Go, horsey, GOOOOO!"

It was a beautiful night on Chincoteague.

She was not interested in the ponies until after we rode the rides!

She said, "Aunt Chels, We saw them when we drove in.

Let's go ride some RIDES!"

She is such a beautiful little kiddo. We are very blessed. 

I have a crazy hectic day, but prepare yourself for the blog post titled "Pain in My Ass...Literally." I think my nerve damage is increasing....

Off to a surprise birthday party for this gorgeous 70 something Granny I know! Shush. Don't tell her! 

"Where I Come From"

There is a small island located about 10 minutes from my house called Chincoteague Island. Every July, the Saltwater Cowboys swim the wild ponies from Assateague Island over to Chincoteague. For locals, this day is a holiday. It is not just a big event for us here on the Shore. Oddly enough, this event attracts thousands of people to our little island. It was on CNN last year....!(See article here or visit www.Chincoteague.com)

By the way, let me be very clear to those concerned about the well being of the horses. They are very well taken care of. Your horse should be jealous of these horses. ;-)

If you would like to know more about the famous horse Misty of Chincoteague--Check out this website here:
If you would like to purchase a book--the elementary schools out in Blacksburg, VA, have their children read it--click here. 

Since being out in this hot sunshine all day is pretty much against my new lifestyle, I skipped the pony swim this year. Although it is a lot of fun, I think I will wait until my niece is old enough to enjoy it or I have babies. Instead, I am having a hot date with my 4 year old niece tonight. I am taking her over to the carnival grounds to see the ponies! I am sure I will get talked into doing other things at the carnival as well. Lulu does not have to ask me twice...She is a kiddo who loves animals. I totally predict that she will at least consider becoming a vet many years from now. Mark my words!

I get to enjoy the ponies, my niece, and the local holiday all while being sun safe. Sounds good to me!

Off to spoil the niece!

Yet Another Blog

I had forgotten how much I truly love to write until this blog really started. I love it! Even if people do not read my posts, I get so much relief and clarity when I sit down to post the thoughts running through my head. Yesterday I wrote that it is time to get back to my life. I mean that. I need to let melanoma sit on the back burner for a while. Don't get me wrong. I still plan to write probably every day; however, I have decided I want to write about other things as well.

...Which is why I am starting a new blog: http://nogoodreasonwhynot.blogspot.com. Instead of focusing simply on melanoma, I will write about whatever strikes my fancy. Maybe I will see an article in The New York Times that I have to discuss. Maybe Lindsey Lohan will--yet again--do something to make headlines. More than likely, I will read an amazing book that I must share with someone.

Like I said, I will not give up on this blog. It is my baby. It has absolutely been the best therapy I could have wished for. It also reminded me just how much I love to write.

I hope you will follow the new blog right along with this one. I can't promise it will be as informative, but I guarantee it will be interesting---at least from time to time.

Happy Tuesday, folks. (Seriously, doesn't it seem like it should be Friday already? What a long week!)

Let's Talk Sunscreen...

http://davegranlund.com/cartoons/

It seems like every time someone lectures about the benefits of sunscreen, another person will argue that the potentially harmful chemicals in sunscreen do not outweigh the protection that the lotions provide you with. Today The Skin Cancer Foundation posted this great article which breaks down why they believe sunscreen is worth it.

Have you noticed that when something becomes a popular topic--and skin cancer has been more popular lately--people want to show both sides. The news has covered great advances in skin cancer lately: the approval of Yervoy, the new FDA rules for sunscreen, and more advertisement on the damages of tanning beds and sunburns. Because we like to see both sides of situations, people are publishing information that claims sunscreen can be harmful, black people can't get skin cancer, etc, etc, etc. Even though I know that everyone--regardless of your skin tone--can get melanoma, some people believe these reports. What happens if people start to believe that sunscreen is unhealthy for you?

That is the biggest concern for The Skin Cancer Foundation right now. In their article, they write, "We are concerned that the criticisms will raise unnecessary fears and cause people to stop using sunscreen, doing their skin serious harm." I can see why this would be concerning for them. Since 1979 they have been dedicated to educating people on the best possible ways to prevent skin cancer. When melanoma becomes a part of your life, they strive to share information with you that can educate you, comfort you, and lead you in the best possible direction.

Oh, by the way, I am not writing this article about The Skin Cancer Foundation simply because I have an online Skype interview with them on Tuesday. ;-) I am writing it because they, along with Melanoma Research Foundation, truly impress me with their dedication to raising awareness.

So, look over the information. See what you feel more comfortable with. Decide for yourself if sunscreen is something you should use. Whatever you do, make sure you keep sunscreen on your children. They don't have a say in protecting themselves.

Rules of Sunscreen:

- Use an SPF of 15 or more.

- Apply 1 oz (2 tablespoons) of sunscreen every day.

- Reapply every 2 hours! AND after swimming or sweating a great deal.

- Stay out of the direct sunlight between the hours of 10 am--4 pm.

- Keep newborns out of the sun!

- Remember that some medications cause you to burn easily. (A lot of birth control pills...!!) Read the labeling. Take extra precautions.

- Again, women, you do a monthly boobie check, right? Check your skin, too!

You can prevent skin cancer. Why don'tcha try?

XOXO

http://www.skincancer.org/recentattackssunscreen.html

http://www.skincancer.org/Sunscreen/

http://www.nytimes.com/2011/07/26/health/26brody.html?_r=3&adxnnl=1&adxnnlx=1311615473-tjD7Nig/I8MPsLgwL/477w

Dear Life, I Am Ready For You.

‎"Today, I interviewed a woman who is terminally ill. '

So,' I tried to delicately ask,

'what is it like to wake up every morning

and know that you are dying?'

'Well,' she responded,

'what is it like to wake up every morning

and pretend that you are not?'"

~Unknown

I saw this on a friend's Facebook status. Could it be more true? We as human beings know that eventually we are going to die. Sure, we all tend to live in denial and pretend that we are invincible; however, most of the people who read this blog already received a rude awakening that we are quite the opposite of invincible. Regardless of health issues, we wake up each day not knowing if it will be our last. Do we automatically worry? No.

Before melanoma, I did not think about death often. The idea of losing people close terrifies me. The idea of myself being the one passing was something I simply did not think about. I am 24 years old. I have the rest of my life to worry about dying, right? (We all assume the rest of our lives will include a great deal of years...) Then I got diagnosed with melanoma and I simply prayed I would get the opportunity to become older. Some people dread turning a year older. I admit, I thought my life would be a lot different at 24, but instead of cringing when I blow out 25 candles, I will celebrate. (I'm talking full fledged party style celebration....)

That brings me to the subject of living in fear. Yes, melanoma is incurable. Yes, in its advanced stages it is normally fatal. I realize that. I also realize that I could get in my car and get struck by a tractor trailer while driving home. I could fall down the steps in my fabulous heels and break my neck. I could be in the wrong place at the wrong time. Anything could happen. I cannot wake up every day wondering if the mind numbing headache is the result of a tumor in my brain. I can't freak out over the lump in my shoulder. I cannot constantly wonder if there are cancer cells floating around in my body.

Why bother having a NED life if you are not going to take advantage of it?

During my appointment on Friday, I told my oncologist, The Wizard, that I feel really great. I told him I feel better now than I have since my first surgery in January. I admitted that I feel guilty for feeling so good because that means I am probably receiving the placebo; however, I am OK with it because it is nice to be getting my life back. Both the nurse and the doctor said, "We are so glad to hear that." And it is true...There are no cures for melanoma, I know that, but if I am clear right now, shouldn't I get back to living my life?

Why should I fear for something that is entirely out of my control? Sure, if I have a "dirty scan, I will have fears. Yes, if my blood work shows a reason to be concerned, I will be paranoid. But, I can't stop living my life because melanoma may kill me one day. Something will kill all of us one day.

So, it is time. All summer long I said I was not going to make plans until after I finished treatment and received healthy scans in August. But, you know what? I want to begin making a life for myself again. More than ever, I know what I want out of life. Now it is time to work on getting it.

Round 4

Now I know why people leave the City in the summer. Boy, it gets hot! Mom and I left  on Wednesday to meet our Canadian friends Lindsey and Susan for a couple days of fun in the City. The trip up there was simple enough. There was oddly quite a bit of traffic but nothing too terrible. We decided to stay at The Westin again in Newport because it is our favorite hotel in Jersey City. Everyone who works there is overly friendly, the rooms are comfortable and clean, and there's a reason why they call their beds heavenly...

During the ride I received the most interesting email from someone who works with The Skin Cancer Foundation. She complimented me on my blog, and after a few back and forth emails, she asked if I would be interested in sharing my story through an interaction on Skype. This conversation would then be posted on the website they are relaunching in September. Awesome, huh? I am so flattered. I started this blog in the beginning for 3 reasons 1) because Mom told me I should...(She knows her daughter well.) 2) For my own therapy (and to keep myself sane from the questions from family members.) and 3) to show that melanoma is not just skin cancer. I had no idea the amount of support I would receive from strangers all over the world. Every single time I hear "I will never use the tanning bed again" I know that sharing my personal struggles has been worth it.

Anyway, back to my NYC adventures.

Wednesday evening once the ladies got into town, we headed over to Hoboken in hopes of taking Susan to see the Cake Boss. Unfortunately everyone else in New Jersey decided to pick that day to see him as well. We jumped onto the path train and headed into the City instead. We ended up at Rockefeller Center for drinks at The Rink Bar. It is such a cool little place where locals tend to meet up. Lindsey and I sat bat, sipped our drinks, and people watched while Mom & Susan got caught up. You truly never know what you will see in New York...

The random stretch Rolls Royce that 

was parked casually on the side 

of the road.

They are coming along on the tower...

Thursday morning we woke up with the intention of taking the Sex & the City tour. Unfortunately--again--everyone else planned to do the same thing. Instead we took the big red tourist bus tour! Here is what I have learned from that tour: 1) it really can be a great thing ONLY if your tour guide is informative and interesting. Otherwise, it is boring...very boring. Because the temperatures were outrageous on Thursday, we knew that the bus would be a good idea instead of walking all over the City. After we did the downtown tour, we decided to see what Brooklyn is all about.

Brooklyn is.........well............it's not the place you want to visit on one of those big red buses. Not only did we have a horrible tour guide, it was hot, there was a bike race going on so we had to move slowly, and we could not get off to explore when we felt like it. I guess I should have read that it was not "hop on/hop off" before taking the tour. Oops. I think Brooklyn could be a neat place to visit with people who live there now. Maybe one day!

After we got back from that tour, cooled off, and did some shopping, we were walking towards Central Park when we saw The Plaza. Next thing I knew, we were walking into the famous hotel for wine. (Yeah, yeah. I know people like to have tea at The Plaza, but hello, do we look like tea people? Wine all the way.) It was a fun experience with wonderful ladies.

All in all my two days of play time with 3 fabulous ladies was a lot of fun...even if we did all sweat a ridiculous amount!

Friday morning the fun was over. Mom & I got ourselves ready for the last day in the chemo suite for 3 months! I saw my vampire friends in the lab to let them take my blood, had an uneventful appointment with my oncologist (I like uneventful appointments...) and began to wait for my last session to begin. Treatment was scheduled to begin at 10:30; however, it was 12:30 before we were called, and it was 1:00 before the nurse got the IV in my arm. My veins were not cooperating at all on Friday. She warmed my arm, she tried 3 different veins, and then she finally got one that screamed "Just use me!"

Treatment itself was simple enough...Blood pressure decreased some over the 90 minutes, but that's pretty normal now. The only eventful thing about the entire day was the man in the suite next to us. He was an older gentleman who simply did not want to live anymore. How do I know that? Well, he said it. He was begging to go back to his nursing home, he was becoming more and more upset as the nurse continued to postpone. He kept saying, "I am tired!" I believed him, too. It broke my heart....I wanted to take that poor man back to his nursing home, put him in bed with his pain medicine, and let him ride out his days. Hearing this poor fella say that he wanted to die nearly did me in for the day. There is no other way to put it, it hurt my heart.

I am so thankful for Mom's assistance in getting me through the last 12 weeks. I know that physically, financially, and emotionally it has been a rough 3 months, but we did it. And every single time, we made the most of it...She made sure that we always had some fun even when she knew I would have been content hanging in the hotel room feeling bummed. She has been my backbone. Love ya, Momma.

Once I was free to leave, we got back on the road to head back to Virginia. That is when I learned of Tina's passing. She fought against melanoma since 2006. I know she was tired...I keep praying for her family...

Anyway, Mom & I got back to Virginia a little before 10 pm. We were both exhausted. In fact, I did not move until after 11:00 this morning. I can't remember the last time I slept in that late. I have been extremely lazy today...I still feel too tired to think clearly, but I wanted to post a little something regarding the last week. It has been a busy one, that is for sure.

I will post more later...Maybe I will be more interesting once I get some rest. ;-)

Have a safe weekend, friends.

A Warrior Angel

I am riding home with my mom from round 4 in the chemo suite. Posting on my iPad is a little difficult, but I needed to request thoughts and prayers for a family.

It is with a heavy, heavy heart that I tell you Tina, author of www.paleskinisin.com
 has lost her fight against melanoma today.

(I took this picture from Al, author of

Black is the New Pink)

Tina is the definition of a melanoma warrior. She was strong, determined, brave, and kind. Despite the hardships she faced personally, she made time to encourage other warriors to continue their fight with courage AND a smile. She made sure to leave me kind and detailed messages offering her support and advice. My battle was nothing compared to Tina's, but that did not stop her from being a cheerleader.

Tina leaves behind a supportive family, a loving husband, and a precious child. She was only in her 30's...

As I ask you to pray for the strength of Tina's family, I also beg you to spread melanoma awareness. This beautiful and kind woman lost her battle to the "black beast," but it gives us yet another reason to add extra sunscreen to our bodies, it gives you another need to beg your friend to cancel her tanning membership, and it gives you the chance to realize we only have one life to live.

Dear, strong, and beautiful Tina, it is now your time to rest.

Dr. Jack Ramsay, Basketball, & Good Ol' Melanoma

Let me admit something: I am not a fan of ESPN. Shocking, I know. I was on the Melanoma Research Foundation's Forum today when I was linked to a great article on Dr. Jack Ramsay. Those in the NBA world know Dr. Ramsay. What they did not know until now is that he has battled cancer for 12 years. After winning his war against prostate cancer, Dr. Ramsay was diagnosed with melanoma in 2004. In his new book Dr. Jack on Winning Basketball, he calls melanoma "the toughest opponent I had yet to face anywhere at any time in my life."

The article itself is very inspirational. Here is this strong man, the man you have listened to during NBA broadcasts on ESPN, admitting that melanoma--the cancer that people claim is just skin cancer--admitting that melanoma gave him the hardest fight of his life. People, men especially, need to hear about this experience. We are all lecturing about the dangers of tanning, but melanoma can happen to all of us at any age. Dr. Ramsay's melanoma originated on his foot! From my personal experience with men, I know how hard headed they can be. How many of you manly men avoid the doctors at all cost? If Dr. Ramsay had ignored those suspicious areas, chances are, he would not be here to release his basketball memories.

Like all of us, once we became a little more informed about the seriousness of melanoma, Dr. Ramsay assumed that his diagnosis was a death sentence. He writes, "This is like a death sentence, isn't it, Doc?" He responded quickly, completing an exchange that I remember as if it had taken place yesterday: "No, no, Jack. Some people live with this three years."

This reminds me how important it is to tell newly diagnosed melanoma patients to find a melanoma specialist. I can speak first hand that my local doctors were not up on the latest melanoma news. I don't fault them for it, it it just a fact. You have to go where the research is.

Dr. Ramsay unintentionally gave me a great piece of advice. He shares, "I approached cancer as if I were preparing for a game against a tough opponent. I "scouted" it, learning as much about melanoma as I could. I took on a medical staff of "coaches" who were experts at dealing with this particular version of the disease. I followed the game plan they laid out but made adjustments when the "game" took different directions." That is how we should all approach this black beast. Knowledge is power.

Our medical staff needs to be experts as well. Most importantly, we need to have faith in our medical team. Dr. Ramsay explains, "The best players I have seen and known have confidence in their teammates. They know that basketball's not a one-man game. That confidence brings out the best in everybody, because it's contagious. I had complete confidence in my medical team. They were not only superbly skilled, but they cared for me -- and every other patient they treated -- as if we were the most important people in their lives. That gave me confidence that I could win my battle with cancer." Without full confidence in those who are medically responsible for saving your life, how can you begin to believe you will get through this? I am so grateful

Dr. Ramsay says something in this great article that hit so close to home. I get a bit uncomfortable when people call me a melanoma survivor. I don't see myself that way. Melanoma is something I will battle for the rest of my life. Hopefully I will always remain NED, but the fact that I have melanoma will never disappear. Look at it from Dr. Ramsay's perspective. "But understand this: my commitment to living in the now means I'll never ever say that I've beaten cancer. To do so would be living in the "tomorrow," if you will, and melanoma is far too erratic an opponent to go around making predictions. But I can tell you for sure that I'll never give in to it. Life is too precious to give it up without giving everything you've got -- now."

Shouldn't we all follow his advice?

18 days later...

I have been pretty darn lucky in regards to the short amount of time I have had to wait for pathology reports. I mean, 5 days after 2 full lymph node dissections, Dr. Glinda, my surgeon at Sloan Kettering, had the report ready for me. This time, for one little tiny mole, I had to wait 18 days for the results.

Have you ever had to wait for important lab results? If so, you feel my pain.

Although I was not overly concerned with the mole, I did have a sinking feeling in my gut when the nurse told me she could not give me the results until the doctor was back in the office. I have friends who have received pathology reports from their nurses, and the way that she insisted I wait for the doctor made me feel a tad bit uneasy. I wanted the results. Good, bad, or ugly, I wanted them.

At 6:30 this evening, I received a voicemail saying that everything was fine. The mole showed no signs of melanoma.

Deep sigh of relief.

Of course I did not want the mole to be a melanoma for the obvious reasons, but I truly did not want to be kicked out of the trial. I knew that if I showed evidence of disease, I would be kicked off of the trial immediately. I am about the head for round 4, I don't want to be booted out now!

It should come as no surprise that being told that I am still NED lifted a huge weight from my shoulders. I know that tonight I will sleep more peacefully.

Funk.

To be blunt, I am in a blah mood.

"What's wrong?" is the question my Mom & boyfriend have repeatedly asked me over the last few days. I don't have an answer for it. I am tired, I feel emotional, and I am a bit pissed off. I wish I could simply say, "My friend ticked me off" or "I don't feel good." None of those things are completely true though. Sure, I am feeling a little irritated with some close friends, and yes, I feel like I have an ongoing hangover, but those aren't reasons for my bad mood. Maybe I am hormonal! Isn't that what all men blame our bitchiness on anyway? But seriously, I can't pinpoint where my bad mood is coming from. I just don't have the energy to be cheerful.

Y'all know this is unlike me.

I have been going to sleep fairly early, getting about 9 hours of sleep per night, but yet I wake up exhausted. That is my biggest problem right now. No matter how much sleep I get, I am constantly tired. I push through it though...I wake up around 8:00 each day, get myself ready to go help my Step Dad for a few hours, then go home and lay in bed for a bit, get some energy, eat with the family, and call it a night. Maybe my problem is that I am not being a busy bee. I seem to stay more cheerful when I am working on 100 different things at once.

I think it is time to start making plans for the rest of my life. I need to get some ideas working on where I want to be, what I want to do, and how I am going to do it. I would call it My Bucket List, but I think it's going to be more work/daily life related than fun adventures. I feel uneasy when I do not what the next step is going to be. I know that right now I need to continue what I am doing, but I am starting to feel like a caged animal. I want to get out of this 3 week treatment bubble and start regaining a bit of my own life again. I am incredibly grateful for my family & how they have taken care of me in the last 6 months. I have not had to worry about anything except my own well being. I realize how lucky I am every day. I also realize I can't live in their safe little bubble forever either. I have lived on my own since I was 18. I need to find that ability again.

Thankfully, after this treatment on Friday, I am finished with treatment until November. I have to return to New York on August 4th for scans and a check-up with The Wizard, but after that (as long as things are OK) I am free from the medical world until the beginning of November. I can't begin to explain how excited I am for a break from needles, and Chemo Suites, and lab coats. I am extremely grateful for the wonderful care I have received; however, one place where you wish they would forget your name is in a cancer center.

I should stop complaining. I have an amazing life. I am--hopefully still--NED. I feel so at peace with my decision to try to work things out with Mr. Spots, and I have fun adventures planned in NYC this week. But, I said in the beginning that I was going to be completely honest in what I post on this blog. I can't pretend like every day is a good day--most days are great days--but there are days when I just don't feel like being upbeat. Today is one of them. I will get over my funk & be back to myself in no time. I know it.

Now...I need a nap. Again.

Goooorgeous.

What a pretty Saturday!

(Thanks, E, for letting me use your picture!)

Life has been uneventful for the last few days which has been a nice change. A lot of reading & sleeping. One of my old friends actually sent me a message Thursday night around 9 pm and asked if I wanted to go out. My response was "I am already in bed." He immediately replied, "....Remember when you used to be fun? That was cool..." I am officially an old boring lady! Oh well. I don't feel like I can get enough sleep.

Last night I decided to go out with a group of my friends to see this band I had heard a lot of great things about. I am very glad I went. Not only did I have a blast with my friends, I saw people I had not seen in years! It was nice to play catch up. Oh, and if you have the opportunity to see Snackbar Jones, dooooo it.

It is hard to believe--again--that I leave for New York on Wednesday. This time it will be a fun trip. Mom & I are meeting up with Mom's best friend from Canada & her daughter. I am very excited to see both of them. We are going up on Wednesday so that we can have some playtime before my 4th treatment on Friday.

Anyway, not much to tell. I just wanted to post a hello message. I also came across an awesome video this morning that I think everyone should watch. It is only 30 seconds long but it is very impacting. Share it!

Dark Side of Tanning

One last thing--to the girl who talked to Mr. Spots on Friday, thanks for reading my blog & for saying all the great things you did! He sent me a very sweet message that night. I hope to meet you when I make it back to Roanoke!

Enjoy this beautiful weather. Don't forget the sunscreen!

No Drama, Just Facts.

I realized I have been writing a lot about my emotional life & have said very little about my health. I figured I should post a quick update & let everyone know how things are going.

Pathology report from the mole removed last Friday: The results are in; however, the doctor is out of town until Monday. When I called today the receptionist told me that the results were in and a nurse would call me this afternoon. Well, the nurse called, informed me that she could not give me the results, and that I had to wait for the doctor to return on Monday. Annoying. I am not freaking out though. I am going to have faith that it was just an unusual mole. I mean, if it was melanoma, wouldn't the dermatologist inform my oncologist, even if he is on vacation? That is what I am telling myself. Regardless, I am glad it is off of me. Better to be safe than sorry.

Ipi World:  My taste buds are acting crazy again. I opened a diet coke today, excited for the first really cold sip. Instead of the refreshing taste I normally get, I was hit with an extremely metallic flat soda type of taste. Disgusting. Y'all know I love me some coffee...I was checking emails this morning, preparing for my day, when I took a sip of my beloved coffee. If my eyes had been closed I would have sworn it was warm water with a splash of milk. SO disappointing...(And yes, I realize a lot of people believe you should cut caffeine out of your system, but I just can't and will not do it. As my friend John said, "No caffeine is not human." I need caffeine these days otherwise you will find me sound asleep around 2 pm each day.)

I still feel like I have the flu...or maybe just a pretty bad hangover. I am tired, my muscles ache, and I have almost a constant headache. The pain in my neck/shoulder is returning again. It had gotten better for a few days, but the seat belt really bothered me today. I just took one of my pills so we will see how I feel tomorrow.

My stomach has actually been OK lately. I've had a few episodes that I won't describe, but it has not been as nearly as bad as I expected. In fact, it is better than it was after the first & second treatments. I'm starting to wonder if my tummy issues were associated with the drug or just a coincidence. I have started to get a little nausea though...Nausea is not welcomed here. I'd much rather get sick rather than feel sick. Ugh and ugh!


Honestly, I feel like I feel too good. To me, it is like a relief to feel like going out and doing things. But in the back of my mind, I wonder if feeling pretty decent is a sign that I am receiving the placebo. Either way, I know that this trial was the best decision for me because it has allowed me to 1) feel like I am making an active decision to keep the melanoma from spreading  2) it allows everyone to keep a close eye on me. If melanoma turns up elsewhere in my body, we will know almost immediately. That is a huge relief. And 3) Because people participate in these trials, there may be a well tolerated effective, scientifically proven preventive treatment available one day! How great would that be?

Melanoma is being mentioned more often these days! Thanks to those who alerted me of these sites.

http://www.elle.com/Beauty/Health-Fitness/Record-Rates-of-Melanoma

http://www.spafinder.com/melanoma
http://www.cleveland.com/healthfit/index.ssf/2011/07/lyndhurst_couple_gives_17_mill.html

I am still fighting with the insurance company regarding my blood work & neck biopsy, but hopefully after the phone call to them today, things will be handled properly.

Before I go to bed I want to thank everyone for their support on my 6th month melanoma anniversary. I don't think I can explain how much your comments mean to me. There are certain people who post the most intimate comments that make me know you really care & you really get it. I am forever grateful.

Now, I need to take myself to bed! Sweet dreams.

USA Soccer!

In honor of the USA ladies soccer team's victory today, I thought I would post the picture of my meeting with Christie Rampone. She was the guest of honor at the Sun Safety Expo at Grand Central Station in NYC back in the beginning of June. I actually met her directly following my neck biopsy...

I thanked her for using her name to help promote skin cancer awareness, and told her a quick "hey, I have stage III melanoma, your help is truly appreciated." She is a sweet lady, seemed a little caught off guard by me, but said she always wears sunscreen. She was going to let me wear her medals for the picture but since I just had the needle biopsy not even an hour before, I politely passed. I was already feeling sore! ;-)

Anyway--just a quick post to again thank Christie for being there, thank Melanoma Research Foundation for their continued effort in promoting skin cancer awareness & to say WOO HOO! USA! USA! USA!



A White Person's Disease?

I used to be totally against Facebook. I thought it was annoying, way too public, and basically a waste of time. Then I became an extremely busy young lady & lost contact with anyone who was not on Facebook. Now, I use the nifty social network for another important matter: Melanoma awareness. Some people may get annoyed by the links I post leading them to other melanoma articles. Then again, maybe they would not come across the information if it had not shown up in their newsfeed.

Case in point: Today I posted a link to an article on CNN.Com regarding melanoma in people with darker skin colors. Not an hour after posting the link, a young mother, who I actually do not know personally, commented, "Wow, I have always heard dark skinned people weren't at risk. My kids are mixed, so I never worried with it. Thanks!" See--That one article that some may find annoying is something that will possibly save those children from experiencing the craziness that is melanoma. 

The article is written by a dermatologist in Miami. She discusses how minorities are less likely to go to a dermatologist which is why early skin cancer detection is not likely. She writes, "Because of this, those with darker complexion have a greater risk of dying from skin cancer than their light-skinned counterparts. I cannot stress this enough. Skin cancer is not just a white person's disease."

Remember Bob Marley? Yeah, he died of metastatic melanoma. He wasn't exactly white. His melanoma was found after an injury to his toe. The dermatologist writes, "New or unusual moles on the hands and feet are especially concerning in people with skin of color and should be checked by a dermatologist." Do what she says...Don't let it advance like Mr. Marley did!

Read article here.


My Mom alerted me to some of the comments that people were leaving on the article. Having been an author to this blog since January, I have realized that people leave nasty comments just to leave nasty comments. Still, some of these irked me:

"Its in the opinion section cause this is bull crap not fact! I'm black and NEVER heard of anyone personally getting skin cancer, our skin is created for the sun."

 

"I think this is a misinformed article, I realize the doctor wishes to have her a blog, but uh, where are the stats concerning skin cancer for blacks.  I feel this doctor is trying to cause unnecessary alarm, give us the facts doctor."

"She's pretty quick to point out the dangers of moles, but what about surgery?
Every year, people die because some quack infected them with non-sterile instruments.
At least skin cancer would kill me slowly, slow enough that I could
say goodbye to my family, get my affairs in order, and smoke a giant doobie. Or several."

"Yeah right.  You don't die from skin cancer.  You die when it spreads to other organs in your body.  It would be a rather unpleasant experience to say the least."

OK---What did I learn after reading these comments? 

1) Skin Cancer Education Is Desperately Needed! You don't die from skin cancer? Really? You think the cancer just suddenly shows up in your brain, liver, and lungs? It begins somewhere. Hopefully you are lucky enough to realize it before it has spread to your organs.

2) It is obvious who has never known anyone personally who has had a melanoma scare or died from it. Skin cancer allowing you a slow death? Advanced melanoma does not waste much time killing you. I guarantee that when the time comes, you will still wish for more time.

3) Some people will argue just to argue.

and 4) Maybe I shouldn't read the comments section.


Anyway, I just wanted to post this article because I do think it is important for people to realize that melanoma isn't racist. Sure, it is more popular in red headed, blue eyed, fair skinned folks, but not all of us melanoma warriors fit that description. Just because it has not happened to you or someone you know does not mean you should ignore the possibility.

Isn't it better to be safe rather than sorry?

"Love & Cancer Were Strange Companions..." ~L.A.

One of the most important lessons I have learned is that there are absolutely no rules to follow when your life turns upside down. There are no guidelines warning those around you to prepare for your mood swings, emotional breakdowns, anger, and denial. On the flip side, there is no pamphlet released that gives your loved ones information on how to deal with their own fears, anger, and denial. We all just try to take it day by day, minute by minute.

Lance Armstrong writes in his book It's Not About the Bike, "Cancer does one of two things to a relationship: it either brings you closer together, or it tears you apart." In my case with my guy, it did both. By the time I got diagnosed with melanoma, we had already made it through 3 months of stress, worry, and a month of recovery from that surgery. I had just started being my normal self again when I was diagnosed January 10, 2011. It was scary, and shocking, and one of those, "Seriously, what else will happen?!" moments for both of us.

As I have discussed in previous blog posts, Mr. Spots got hit with the majority of my fear. With everyone else I could smile & downplay how scared I really was. I did not want to be seen as the depressed girl, the girl no one would want to be around. With him, my guard was completely lowered. There were nights I would crawl into bed with him, lay across his chest & cry,  Days in the shower when I would cry until it hurt to cry anymore. I can remember a particular lazy Sunday afternoon, after reading too many things online, I crawled in his lap and sobbed like I had just been diagnosed again. I would never say a word. I would just cry. And he would let me because he knew that is what I needed at that particular time.

Besides being scared and depressed, I was angry. I felt like I did not deserve this. I felt bitter towards the people who tanned on a daily basis but were still able to live their normal lives without any repercussions. I was furious with mothers I knew who felt like life took away their freedom to have fun because they had children and could not go out drinking every weekend. I felt so angry towards the people in my close knit circle of family & friends who could continue on with their normal lives whereas my life was completely turned upside down. To say I felt angry & resentful the first few months, heck even now on certain days, is an understatement. I was not always easy to be around.

Mr. Spots had a few key moments when it all got to be too much for him. I can't speak for him, nor do I want to try because it is not fair, but we both know we made some mistakes in how we handled certain things. We spent the last 2 months apart from each other & it sure was eye opening. I think for me, I needed to see that I could survive without him. I was so emotionally and physically dependent on him that I felt like I lost a big part of myself. I needed that part of myself back.

Anyway, the reason I bring this up today is because Mr. Spots came into town on Sunday to celebrate my 6th month melanoma anniversary. He knew I needed him here. He was with me when I got the news, and although 6 months is really nothing that important, it was important to me. He knew it.

We took off to Ocean City, MD Monday afternoon. I thought it would be something fun for us to do, something we have not done before as a couple. We headed to Seacrets first for lunch. If you find yourself in Ocean City, make sure you check this place out. 

Their famous "Pain in de Ass."

I am not a huge rum fan,

but I looooove them.

After a few cocktails and a delicious jerk chicken sandwich, we headed over to the boardwalk. For some reason, I had in my head that Mr. Spots had a fear of roller coasters. So, thinking he would not go for it, I suggested we ride it. Joke was on me...He was all for it. I was a little concerned about how the roller coaster & my shoulder/neck pain would do, but I made out OK. I had a blast, so it was worth any pain I felt. For the record--I've been in bed all day today. I think yesterday took a lot out of me! So worth it though!

We were like two kids walking around the park, riding the rides. I think we laughed more yesterday than we have in months. Seriously, by the time we got off the last ride, my stomach hurt from laughing. It felt great. 

We had one more thing we wanted to ride before we started pigging out on Thrasher's french fries, Dough Rollers pizza, and Dollie's popcorn:

The Ferris Wheel!

So, that is how we spent my 6 month anniversary with melanoma. 

Together.

The Last 6 Months...Picture Telling

Six months ago my lifelong partnership with melanoma began. Yes, lifelong. Why? Melanoma is a terminal disease. (Yeah, I didn't know that either...) I figured I would tell my story this time through picture form. It has been one hell of a journey so far...

These were pictures from the surgery in January 26, 2011. (Minus the other armpit & other side of my neck...I was seriously cut up!) My sister teased me that I looked like Mrs. Frankenstein, but she was right. I totally did.

This was the girl who got me through the lonely days after my family brought me home following the first surgery. She has been my best friend since 4th grade. It's true, people you have grown up with know you better than most...Even though some believe I should hate the beach, it is still the one place I always go to clear my head.

These pictures were from the first trip to NYC when I first met my new oncologist at Memorial Sloan Kettering Cancer Center. That was one of the toughest appointments because I was told that without surgery, I was not sick 'enough' for any of the clinical trials. My options were "watch & wait" or Interferon.



If you find yourself in NYC, go to Serendipity 3 for their Frozen Hot Chocolate. It is so good. 

These were taken about a month after surgery...The armpit scars are hard to see in pictures.

When finding out that I was in fact having another surgery, I decided I needed a vacation. I also needed to see my Gran & Pop. Off to Florida we went...



Mr. Spots & I had a great time in Florida, followed by a wonderful romantic stay in Savannah, GA.

Then it was time to let the surgeons slice & dice me again. On March 24, 2011 I checked into Memorial Sloan Kettering Cancer Center's main hospital for a full lymph node dissection of my neck & a full lymph node dissection of my left axilla (under my arm.)

4 nights in the hospital, 3 drains coming out of me, a severe allergic reaction to something, and a lot of stress for my family, I believe. At least I had amazing nurses who kept me nice & drugged!

I was released into the public with my two arm drains, returned the next day to have them removed, and was told that my pathology report came back...Out of all of the nodes they removed, ZERO were positive for melanoma.  I cried.

The end of April---Melanoma benefit organized by the best band in Roanoke: PolyChrome. I will never be able to thank the bands who participated or the community who supported us. It is a day I will never forget.

My story got published in a local magazine! (I have a 3 page spread coming out in the latest edition of my sorority magazine THE CREST. I am very excited to read it.)

Being sun safe even while out having fun!



Other NYC adventures!

So, that's where we stand right now. 2 surgeries, countless appointments, 3 sessions in the chemo suite, and suddenly, my six month anniversary with melanoma has arrived.

Protect the skin you're in...