"Isn't it ironic? Don't ya think?"

Dad: "Are you going to New York tomorrow?"

Me: "Yes."

Dad: "For what? It's time for treatment again already?"

Me: "Unfortunately..."

 Seriously, the last 3 weeks have flown by! I had to laugh today. My friend John emailed me, I am assuming he read my last blog post about being so exhausted, and he said, "At least you will sit still while they have the needles in your arms!" That is one way to keep me in place!

I started to feel pretty rough today. Like after the last treatment, my neck is really becoming painful again. It is swollen, sore, and feels like the nerves in my neck are trying to crawl through my skin. Have you ever had an itch underneath your skin? It is A-N-N-O-Y-I-N-G. No matter how much you scratch in the itchy area, it continues to itch. Today my neck felt like someone had their hands on both sides, slowly squeezing. Uncomfortable!

ANYWAY....

It has been a while since I have shown y'all my "bad ass" scars. I had Mom snap two updated pictures of my most visible scars. (Remember...I had one surgery in January where they sliced and diced me in 5 areas: both sides of my neck, both armpits, and my back.)

Here is my back directly following the surgery in January 2011:

And here she is in June 2011:

Looks better, huh?

Here is the right side of my neck following the SECOND surgery---full lymph node dissection:

Here is Ms. Neck Scar today:

Dr. Adorable at Sloan Kettering did a freaking awesome job on this. I realize it still is not pretty, but I am not ashamed of it. I feel like it blends in fairly well...considering!


Although my scars are still noticeable, I am relieved I heal fairly well. Every time I see a tanning bed whore (I should come up with a more polite term for them, buuuuuut they make me angry...) I want to shove these pictures, and all of the other pictures from where I was cut on in FIVE locations at ONE time, in their faces! Today I logged onto Facebook and saw a girl had changed her profile picture. The very first thing I noticed was her white line under her chin. I know that line. I used to get it after spending too much time in the tanning bed. Sure, she looked pretty in her picture, but all I saw was her ignorance. Man, if I had known better, would I be in this situation today?


I read an article today (read article here) that begins: "Just because someone is college-educated doesn’t mean he or she is cancer smart." How true! I am not an idiot. I did well in college, I graduated from college, etc. Still, I visited tanning salons every once in a while. Ironically I tanned to prevent a burn...Mistake! But still. I wanted to look good! I associated being tan as being attractive. No, I never let myself go crazy with the tanning, but I had what I considered a healthy glow (I cringed as I typed that...) during the summertime thanks to my visits in the tanning salon.


This article makes an outstanding point...

"It’s ironic, said Morris Hospital oncologist Dr. Nafisa Burhani, that women work so hard to get a tan to look better, when melanoma can leave its victims so disfigured. Melanoma is a skin cancer that is very invasive, she said. “Melanoma can be very disfiguring,” Burhani said. “You need a wide excision area that can result in disfigurement. It can get ugly."

If I had to choose between my old, healthy, pale body or this new sore, scarred, and not-that-healthy body, I would confidently walk around being the palest chick on the East Coast!

My scars are a constant reminder that I need to continue to fight, strive to make others realize the seriousness of this unpredictable disease, and they remind me that even on my weakest days, I am much stronger than I had ever imagined.

OK, I leave for NYC tomorrow morning. I better pack my suitcase! You never know who you'll see in the Big Apple!

Exhaustion Strikes Again

I really need to learn how to relax. I keep my schedule so busy and consistent that I wear myself out constantly. I complain about my exhaustion, but I do little to lighten my schedule. One day I will learn.

Just like after round 1 of Ipi/Placebo trial, I am starting to feel worse as I prepare for session 3. My bones ache like I have the flu, I require naps, and my stomach has minor mood swings. I keep staring at my eyebrows, trying to see any white hairs, but I guess the wax lady pluked them all. I would hate to look like the old man from the KFC commercials. (I think he's from KFC...???)

Now that I have complained enough, I guess I should go back to my day. Nothing new or exciting to report. *Or maybe I'm just too tired to write.... ;-)

I hope everyone is having a good week.

The Week of Round 3

I feel like the last 2 weeks have flown by. It seems like it is too soon to be getting ready to head back to NYC for round 3 in the Ipi world. At least this trip will not involve a needle in my neck! Improvements!

I had an amusing experience on Saturday. I was having my eyebrows waxed when the lady said, "You have a few white hairs in your eyebrows. Don't worry, I will pluck them." I just laughed at the time because I did not feel like explaining that those random white hairs are actually good indicators that I am receiving the drug. I also have a few white spots on my skin! Although I want the drug, I could do without the white random hairs... ;-)

This week we are heading to NYC on Thursday. I will meet with the oncologist at 9:15, get attacked by the vampires for my 16 tubes of blood, and as long as things are OK, head to the Chemo Suite. Following the session, I am visiting a dermatologist there. It is time for my 3 month check-up. I could go back to Roanoke and see my dermatologist there, Mr. Cool Guy; however, my oncologist and I agreed it is better if all of my doctors are in one location. It makes life easier for me. I have a few suspicious areas I want to be reexamined. I would much rather be safe than sorry!

A lot of people have reached out to me this past weekend because of my latest posts about my chaotic love life. Relationships & melanoma = Disaster! It takes a special person to be able to handle the stress that comes along with our new lifestyle... I am going to continue to follow my heart. In doing that, I know I will be doing what is best for myself. (Thank you all for sharing your stories. Especially the happy stories about eventually finding your special person & building a family with them! I am grateful for each and every email I receive.)

I hope everyone had a wonderful weekend.

"You're the cutest thing that I ever did see..."

Most of y'all know I have a special place in my heart for Kenny Chesney. Sure, I wish he would wear some sunscreen, but I still adore his little country self. If I didn't love him already, I sure would after watching him perform "3 Little Birds!" I have hummed that song many times a day since January...Someone shared this video the other day, so I thought since it is a beautiful Friday afternoon, I would repost it!

http://www.youtube.com/watch?v=XiFksihrw5A&feature=share

It is a video of Kenny Chesney & Zac Brown Band performing "The Joker", "3 Little Birds", & "Caress Me Down." I still can't believe I missed this concert!

Anyway, I am feeling more like myself today. Yesterday I was hit with some news that made me doubt some decisions regarding my personal life. As always, I was given great advice from my blog readers (or should I say friends...that is what I consider y'all.) One friend wrote, "My 2 cents from the cheap seats is the vibe I have picked up on you lately is you are comfortable where you are at currently and I would say to stay there until you decide where you want to go and to let things happen and not to force yourself into a decision you don't seem ready to make." *Thanks John!*  He was the second person to tell me to let things happen, not to force things to happen.

I need to stop trying to organize and control every piece of my life. If I give life enough time, things will happen how they are supposed to happen.

What's the big rush, anyway? I am not going anywhere anytime soon.


Happy Friday! XO

Out of Control

Have you ever felt like your life was spinning out of control? The minute you think you have a handle on it, something new happens, and you are back to step one. That basically explains the last 5 months of my life. Everyone has an opinion on every aspect of my life. Not many take the time to listen to what I want, but instead asks, "You're not thinking of...?" Truthfully, I don't have the slightest clue what I am thinking.

I know I want to be healthy. I know I want to continue to promote melanoma awareness. I know I want to be there for my melanoma warriors like they have been here for me. But what else? Where do I want to live? What is the next step in my life? How do I figure out what I want? Then, how do I achieve what I want?

After receiving the great news regarding my neck biopsy, I needed a break from the melanoma madness. I stopped blogging as often, I took a break from the forums, I hardly checked my email. (If I have not responded to you lately, I apologize...Someone told me to be selfish for a while & I actually took his advice.) I needed to start living my life again. Of course there are minor adjustments to my new life...Sunscreen 24/7, I avoid the sun during the hours of 10-4, I check my moles daily, I feel for swollen lymph nodes, I monitor my temperature when I feel feverish, I don't let anyone touch my left shoulder, and I cringe when strangers touch my arms. The list goes on & on. But, I have gotten back out there, started focusing on things other than melanoma. Honestly? It has felt good.

For five months my life has revolved completely around melanoma. Between the scans, the doctors, the bad news, the surgeries, the good news, etc, I have done little else than live in "Hotel Melanoma." As my friend Rich talks about in his blog (click the link above) there is no checking out of Hotel Melanoma unless you pass away. (Melanoma being a terminal disease and all...) Since I have no desire to be put underground any time soon, I am a full time resident. I am lucky to have found myself in the position of having "No Evidence of Disease" but that does not mean I am or will ever be "cured."


Everyone needs a break from their life. So, I took one.  I needed to focus on what I want out of this life. It has been a month since Mr. Spots & I broke up. The details of moving my stuff out still have not been finalized. Moving my things home means the relationship is finished. Done. Over. Am I ready for that? Are our issues because of the stress of melanoma? Or did those issues become more noticeable because of the stress of melanoma? Can you love someone but that love not be enough to make the relationship work? I know I can be OK without him, but do I really want to build a life completely separate from his? Can we ever forgive each other for the resentment we both feel?

Then what about the new life I am slowly creating for myself? The friends I am reconnecting with, the family I get to see on a regular basis instead of once every 3 months, the fact that the ocean--the one place I always relax--is minutes away...Can I walk away from all of this? Do I want to risk losing the special relationships I am developing? What would happen if I went back to Mr. Spots, the same issues came into play again, and I missed out on what I think is a great opportunity?

So, as you can see, I am confused. I feel torn. I feel angry at melanoma for making my life turn upside down. I feel frustrated with myself for not being able to make any decisions. And, most importantly, I feel sad for what could have been...



But, probably, never will be.

Sunscreen.

I swear, without Facebook, I would miss so many great articles regarding melanoma, sunscreen, and really any other piece of gossip I need to survive a boring day...

A great guy who lost his brother to melanoma has a blog that gives out great information regarding the latest news in the melanoma community. (http://blackispink.blogspot.com/) Last night he posted an article on his Facebook page regarding sunscreen. With the updated sunscreen regulations, it is easy to find yourself confused. This article in the NY Times answers all of your questions. Explaining Sunscreen

Did you know?

*"There are two kinds of solar rays: short ones called UVB that cause burning and skin cancer and long ones called UVA that cause skin cancer and wrinkling.

*"An adult in a bathing suit should apply about three tablespoons of lotion every two hours, experts say."

*"Second, above an SPF of 30, which can block 97 percent of UVB (if used in testing amounts), effectiveness increases by only 1 or 2 percent."

*"UVA, which represents more than 95 percent of solar radiation reaching the earth, does not figure in SPF ratings.

*"Products labeled “broad spectrum” will have to provide equal protection against UVB and UVA, and only products with an SPF of 15 or higher will be allowed to claim protection against skin cancer and premature skin aging."

*"The rise in melanoma has led to fears that sunscreens may actually cause this deadly cancer. But other explanations are more likely. By allowing people to stay in the sun longer, sunscreens have greatly increased exposure to UVA radiation. And many, if not most, victims of melanoma were damaged long before sunscreens became popular."

*"Clouds do not block damaging rays."

*"Keep in mind that ultraviolet radiation is reflected off sand and water, intensifying exposure even if you are protected by an umbrella from above."

Read the article! Remember...



Girlfriends.

Today I had the pleasure of meeting two women who contacted me after they found my blog online.We had been chatting online for the past month, but since we only live about 40 minutes from each other, we met in Berlin, MD today for lunch. If you ever find yourself in Ocean City, MD, swing through Berlin. The town is adorable. (Runaway Bride was filmed there.)

This is the only picture I took...

Sitting on the porch,

waiting for the girls.

I have mentioned many of times how much the people I have met because of melanoma have come to mean to me, and it's true. I think after college it becomes hard to make new friendships. Between work, relationships, etc, it becomes difficult to find new girlfriends. I know people talk trash about girls--how they can't be trusted, they are just gossips, etc, etc, etc-- but I adore my ladies & I always welcome the idea of making new girlfriends. There is something special about friendships between women. Although I had to meet these new friends because of melanoma, at least our paths crossed.

There was mention of a sun safety clothing line & sun safety workshops...Be on the look out for us. ;-)

Speaking of awesome girlfriends I figured I'd post a picture of my oldest & dearest friend from a wedding we attended this weekend:

Life would be a lonely place without awesome friends.

Baseball! (And a quick update.)

I guess I have been quite the slacker in terms of posting blog updates! The last week has been busy! Health wise I felt great. No tummy issues. No itchiness. No fevers or chills. I had no complaints up until today. I went to see Hangover II (I laughed...a lot.)  and the chills started hitting me. Have I mentioned that I hate feeling feverish? I hate the way the inside of my mouth feels! It gets so dry and HOT. Anyway, minus that & one heck of a headache, I am feeling OK. I would compare it to how you feel right before you get the flu.

Last Wednesday my Mom, Step Dad & I were invited to go watch the Nationals vs. Cardinals in DC. I had never been to a professional baseball game before so I was quite interested to see what all the fuss is about. Little did I know, we had amazing seats in the Lexus Presidents Suite. The dinner was delicious, the service during the entire game was awesome, and the seats were outstanding. Thank you again, Sharpley's! I had fun! Here are pictures from our trip.

Our family friend! He was my date for the day.

The ladies watching batting practice before our seats were available.

Not a very good picture

but the Club was very nice.

We made it on TV! 

(That's to the DVR and a cell phone,

we saw this.)

Opinion after my first professional baseball game? Fun times! The game itself was uneventful...Nationals won 10-0. It was a great experience though. I even got to see an old friend! :-)

I promise to update more tomorrow...I am in need of rest.

Full Time Job

Through this whole crazy stay in "Hotel Melanoma" I've experienced issues with my insurance company. Almost every time I go see a doctor, which y'all know is often, I have to call my good friends "And.Them." and explain to them that they have my medical records on file, and yes, I am positive my melanoma is not a pre-existing condition.

Normally--after a nice battle--the problem is solved.

Last week I had to call because I had received an updated Explanation of Benefits stating that And.Them had decided to still deny my anesthesia for the surgery I had in January. Here's the best part: they paid for the operation! I guess And.Them thought I should be awake while being cut in 5 areas. When I called the Customer Service Rep, I laughed after I explained my problem. She said, "I see no problem with getting that corrected." I would hope not...

Today I had to call Memorial Sloan Kettering to see why I owed them $1,727 for my office visit on April 22nd. I knew I had not had anything major done that day, it was just a check-up & signing trial papers! When I called MSK this morning, the patient services rep informed me that And.Them had denied my blood work. My first thought was, Wow! A session with the vampires is $1,727..Geeze! Then I got mad. Denying blood work to a cancer patient seems a bit cruel to me. Blood work is extremely important in monitoring my health...especially now where I am possibly receiving Ipi! The claim simply said that the blood work was a "Non Covered Charge." I thanked the not-very-helpful girl and hung up the phone.

On to my next phone call...When I was initially connected to the very nice customer rep at And.Them she could not find the claim for the service date April 22nd. After some hunting, she found it, and informed me that the provider had already been paid. When I explained that I had just talked to the hospital, she pulled up the details, and said that And.Them had paid MSK $1,600 for service date April 22, 2011. She explained that the claim had been denied at first, but that it had been reprocessed and the provider should have received payment by now. I thanked her for being the friendliest And.Them rep. I have encountered and  I hung up.

Time to call MSK again...I received a much more helpful patient rep. who informed me that they had not received payment from And.Them yet but to give it time. He noted my account, and told me someone would be in touch.

Now we wait...Did And.Them pay? Time will tell.

*I say this after every rant against my insurance company, but I honestly do not know how they get away with the things they do. I got lucky this time. The problem had already (hopefully) been fixed prior to my phone call. But what about all the patients who are too ill to call and fight for themselves? What about the folks who would rather pay thousands of dollars towards medical bills that should have been paid than argue with their company? I just hate that so many people are taken advantage of simply because they can be. I understand that it is intimidating to fight for yourself. Those people get paid to make you feel like an idiot. But we have insuance for a reason! It infuriates me, but what can I do about it? Nothing.

Rant against And.Them is over for today...

No Place Like Home

"You can go to the moon...
but this place,
these people,
will always run in your blood.
You can't get away from it, 
so you might as well come home."
~Karen White

See why I love being home so much?

I will post an update later. Heading to DC for my first professional baseball game today! Woo hoo! :-)

"Normal."

I was sitting on the computer, chit chatting with friends, when my phone rings this morning. I notice it is my oncologist, The Wizard, calling from New York. My first thought was, "Oh no. He does not work on Monday. He is calling me on his day off...Not a good sign." I answered in a super cheery voice. (I guess I thought if I was cheerful, he would have no choice but to tell me good news.)

"Hey Chelsea. Have a second to chat?"

He sounded happy...good sign....

"Yes, I have time!"

"Your biopy was normal!"

"Normal?!"

"Yes. Everything was normal. You went through all of that for nothing!"

Oh, thank God! Sure, the biopsy was quite uncomfortable and the anxiety from the biopsy was even worse, but I would do it over in a heartbeat to gain a peace of mind. If you have been reading my blog, you know I tend to expect the worst & hope for the best. Maybe that is because I was expecting a normal pathology report in the beginning and was slammed with horrible news for a while? Either way, it is how I deal with things.

I will have my next treatment on July 1st & will have my next set of scans in August. For now, I just continue to pray that my body will heal, the swelling will go down, and the pain will go away. I am so very thankful that the doctor who did the ultrasound was wrong. I appreciate her desire to be thorough but she terrified me. By her facial expressions and the way she worded things, I honestly believed she thought the suspicious area was indeed a tumor. I am extremely excited she was wrong.

Thank you all for the countless prayers, words of support, and invisible hugs. The amount of support is unbelievable. I am extremely grateful. If you ever--God forbid--find yourself in this situation, I will be your loudest cheerleader. XOXO!

Chemo Suite...Round 2

Sorry it took me a few days to update. After 6 hours at Sloan Kettering and 5 hours in the car, I was exhausted. Yesterday I took a break from the melanoma world because I needed it. I was emotionally and physically exhausted after Thursday & Friday.

Before I get to my day, I want to update y'all. Remember how I asked for you to pray for Erin & Tina? Well, the prayers must have worked. Erin received excellent news on Friday. Apparently Miss Erin has a fabulous immune system. Her body has been fighting the melanoma on its own! She is free from scans, etc, until August. Hopefully in August the scans will remain clear. Tina is still struggling. With the help of hospice, she has been moved to her home to continue her fight. Praying for peace and strength...

So, Friday was round 2 of the Ipi/Placebo trial. Prior to treatment, I had to go to give blood to make sure I was healthy enough for treatment. Another 16 tubes gone...My poor veins are so frustrated. The nurse had to run my hand under water for about 6 minutes before she even attempted to stick me. Lucky my hand was so numb from the hot water that I could not feel the needle.  Everyone knows me now...The receptionist remembered me, the nurses fought over whose seat I was going to sit in, and they picked up the conversation that we were having last time. The one nurse thought I had breast cancer. When I corrected her, she shook her head, and said that she sees melanoma so often now. SUNSCREEN, people!

Steven, the assistant to my oncologist, was sitting in the lab waiting for me.Once the vampires took my blood, Mom and I headed back to see The Wizard. I know I say this a lot, but I really do adore him. He knows how to make me feel so much better about everything. He asked how the biopsy went, I told him that the most painful part was the doctor touching my left shoulder, etc. He asked how bad the pain is, I told him that as long as no one touches me, the pain is about an 8. If someone touches me, well, it's totally a 10. Of course then he says, "well...I have to touch you" and points for me to get on the chair. Although it feels extremely uncomfortable to me, The Wizard says he does not feel anything concerning. He still believes that the pain is related to all of the surgeries I have had in such a short amount of time.

Because I am the type of person who needs to know everything, I asked The Wizard, "So, what happens if the biopsy comes back as something less than desirable?" Before answering, he lectured me on how I should not go down the "what if" road. Then he said that there are 3 possibilities. 1) it is just a group of lymph nodes stuck closely together that are swelling because of all of the healing, and because they are having to work extra hard since I have no lymph nodes in the right side of my neck or the left arm. 2) It could be melanoma. If so, he said we will begin treatment ASAP. No trials. 3) It could be another form of cancer. However, he said "What are the chances that you will have 2 forms of cancer while you're in you're 20's? Highly unlikely. If it is, we will handle it."

Then he said something I love hearing, "Let me do the worrying. I get paid for it. You just live your life."

I really do adore him.

After seeing him, I had an hour to waste before treatment was scheduled to begin. During this time, the doctor has to verify that the blood work is OK and the pharmacist has to mix up the cocktail. An hour and a half passed when Steven walked over to us to let me know that everything was OK. They were just waiting on my drug. 30 more minutes pass, he walks back over. He tells me, "Everything is OK but they are double checking one last lab." This made me nervous. Was there a possibility that something in my blood work did not look right? Of course I asked him. He reassured me that everything is OK. I doubted him.

While trying not to worry, I began observing a woman who was seated across from me. (People watching...I love it.) She kept smiling at me every time we made eye contact which is unlike most of the folks in New York. Finally, I said "I love your shoes!" Because, really, what woman doesn't like to discuss shoes? AND they really were super cute! We begin chit chatting. I find out that my suspicion was right...She's from Charlotte, NC! I knew she was too friendly for NY. (Not that the people from NY aren't friendly, most are! But, I knew this pretty lady wasn't from the City. She looked too southern to me.) She flies from Charlotte to NYC once every 3 weeks to receive pills for a trial that she is participating in. I can't remember the technical term of her cancer, but it is cancer of the fat. This beautiful woman hardly looked like she had any fat on her to have cancer in! I hope to see her again...She was so friendly & kind.

OK, so I finally got called back to the "Chemo Suite." (That's the actual name of the area in the hospital.) My nurse was a hoot! She was young--maybe a few years older than I am--and flat out told me that based on my side effects, based on my medical info, she thinks I am getting the drug. She has seen people on this trial a lot, and the things that I have been experiencing are a strong indicator that I am indeed receiving Ipi. She joked, "You are too young to receive a placebo! ...Don't tell Ruth I am saying all of this!" (Ruth is the head research nurse of this trial.) Regardless if she really thinks I am getting the drug or not, she made me relax. She made me laugh! She is the perfect type of nurse for chemo patients...fun, reassuring, intelligent, NORMAL! She treated me like I am a normal 24 year old girl. I appreciated that.

Please be the drug!!!!

My arm veins went into hiding, too.

I had to be wrapped in an extremely hot towel again.

But, then they decided to play nice!

Sleepy girl, Round TWO!

Round two was pretty painless...minus me giving my nurse a hard time. I had to go to the bathroom, so she's helping me get out of the chair, still hooked to the IV, wrapped in a blanket, and tangled up. So, when she goes to put the recliner back in sitting position, my IV gets trapped! Luckily she grabbed it right before the recliner closed. She said, "You just took a year off my life!" Oops...I also almost fell over after treatment. I kept her amused on Friday, that's for sure.

My blood pressure repeated its craziness on Friday. It started out pretty low, went back up to normal, dropped back down low. Crazy blood pressure...The nurse said only weird people have issues with their blood pressure during treatment. And no placebo can make that happen. Maybe she's right. Or maybe she was just teasing me to cheer me up. Who knows. It worked...that's all that matters!

I have felt pretty good since Friday. Exhausted, yes, but I have not had any horrible issues. I have been pretty nauseous since Friday with a horrible metallic taste in my mouth. I have also gotten pretty bad headaches, but I think that is more related to my lack of appetite.  Regardless of how bland most things taste right now, I have to eat.  I had a tiny rash on my right arm this morning, but that seems to have gone away. Still itches, but no rash! I asked her when most people get the most side effects. She said it is after the 3rd infusion. We will see!

Well, this post has been long enough. Thank you to everyone for all of their support this past week. I needed it and it was extremely appreciated! I am hoping to post good news the beginning of this week regarding the biopsy. I am keeping my fingers crossed! ;-)

Happy Sunday!

Officially A Total Bad Ass!

So, I may have kept my eyes closed during the needle biopsy today, but I am sticking with my belief that I am now officially a total bad ass. I mean, have YOU been jammed in the neck with 3 separate needles? (I hope not because it freaking hurts!)

I began my morning at 7:00, waking up, trying to get organized for my oh-so-exciting day. We knew from the minute we walked outside that it was going to be a hot day. 

We got to the hospital, drenched in sweat, in time to see a young boy--maybe 12--getting ready to go back for scans. My heart broke for him. He should be out skate boarding, giving his parents a hard time, and playing video games. He shouldn't be a patient at a Cancer Center. Something tells me, in the few minutes that I observed him, that he still does all of the fun things. He had a pretty great attitude.

Right around 11:00 Dr. Lee came to get me for my needle biopsy. She was much nicer this time. She still flat out admitted she has no clue what the suspicious area actually is which is why she thinks the biopsy is needed. Instead of making me feel like I was going to die on the table, she was reassuring that the biopsy would provide us with the answers we need to have. I guess everyone could tell I was nervous because they kept reassuring me that the procedure was simple and that I was in great hands.

Once the staff organized all of the supplies for the biopsy, Dr. Lee and her assistant began the ultrasound guided biopsy. Remember how I have been talking about the pain in my shoulder and neck? Well, try having someone "cleaning" that area. I kept jerking my body out of her way. I tried to sit still but honestly it hurt too much. She asked why it hurt. I explained that it was a fairly new problem. The pain and the uncomfortable sensations make me nervous since I automatically assume it is related to the "suspicious area."

When Dr. Lee told me she was injecting the needle to numb my neck, I closed my eyes. I had a strong feeling that if I saw the needles, I would find an escape route out of the hospital. Luckily, I could not feel the first needle at all.  I guess that is one plus to having nerve damage...

Once I was numb Dr. Lee told me she was going to insert the needle, apply pressure for "a few seconds" and hopefully that will be it. What did it feel like? At first it felt fine, a little pressure, no biggie. About the time Dr. Lee questioned if I was feeling OK, I began to feel like the needle was stabbing me in my vocal cords. I started to say, "That hurts!" Dr. Lee quickly told me to stop talking. Oops...Maybe she should have told me that I was not allowed to talk before she stuck in the needle in my neck.

About two minutes (felt like 10) after the biopsy began, Dr. Lee removed the needle. I heard her draining the contents onto the slides that had been prepared. While she did that, Dr. Lee's super attractive male assistant started applying pressure to my neck to limit the bruising. He asks me how I am feeling, I say OK, Dr. Lee says, "We have to do it again." Well, damn.

The process has to be repeated. The second time it was much more painful. I expected the pain in the side of my neck. I was not prepared for it to be towards the front of my neck! After a few more minutes of being jammed with the needle, Dr. Lee told me it was finished. I automatically tried to sit up. I had not even reached a full sitting position when Dr. Lee and her assistant both pushed me back down. "Don't move!" Well, why didn't they tell me not to talk and not to move BEFORE the procedure started?!

For about 10 minutes I got to lay on the table, staring up at the handsome assistant, discussing why he left the Financial District to join the Medical World. Thanks to him applying pressure to the wound area, I do not have a bruise! Y'all know how easily I bruise, so this is a bit exciting. Dr. Lee had to do one last ultrasound to verify that the needle did not cause any damage. All looked good.

I am supposed to receive the results on Monday. Keep your fingers crossed...please!

Because of the heat we did not spend too much time at the Sun Safety Expo at Grand Central. (More on that later.) We came to the hotel, I crawled into bed, and I took a much needed nap. Once I woke up, Mom and I headed over to the mall to do a little retail therapy before going to see a movie. I needed a distraction and something to make me laugh. Bridesmaids was a great movie for that.

I want to thank all of you again for your constant support through this. You not only support me, but you also support my family. We all truly, truly appreciate it. You sure do know how to make a girl feel loved! I may not have responded to every email, call, text, post, etc just yet, but it means so much to me. I hope everyone knows that.

It's late & I need sleep. Tomorrow will be an extremely long day filled with losing too much blood, The Wizard, a visit in the "Chemo Suite", and the 5+ hour drive back home. It exhausts me just thinking about it! ;-)

"She felt small and scared again,

and the need to run away and hide made her foot twitch. 

But she reached inside herself and found the inner reserve, 

her particular brand of stubbornness, 

and clung tightly to it." 

-Karen White

Believing.

As I get ready to head to Sloan Kettering,

I am forcing myself to believe 

that my body has the ability to beat 

this mysterious cancer.

I believe I have the attitude

and support that will allow me

to get through the hard days.

I believe I am stubborn enough

to refuse to let this melanoma

win.

I believe that I will have help

in whatever I decide to do

to try tackle this beast.

I believe I will win.

As I head for the procedure, I am asking that all of you who read this today tell someone about the seriousness of melanoma. Force your best friend to stay out of the tanning bed. Apply extra sunscreen to your boyfriend at the beach. Take your Granny for a walk, decked out in a stylish hat, sunglasses, and protection. Notice an odd mole? Schedule an appointment with a dermatologist.

I realize you think it can't happen to you.

So did I...

QT With Fellow Warrior!

The best part about this New York trip?

Hanging out with a great fellow melanoma warrior! Say a prayer for her, please. She gets scan results on Friday.

Best Momma Ever!

Tomorrow morning at 11:00 I have the needle biopsy at Memorial Sloan Kettering Main Hospital to determine if the "suspicious" area in the left side of my neck is 1) nothing too scary 2) a tumor (AKA--REALLY freaking scary) or 3) a group of lymph nodes (Could be scary...)  My baby sister told me to pretend that I am a total bad ass, going to get a neck tattoo. What should my pretend tattoo be of? How about, "This is what melanoma looks like!"  Suggestions welcome...

Friday morning I will head to Sloan Kettering for a doctor's appointment, and treatment will follow that appointment. Note to self: Eat a good breakfast. They WILL remove 16 tubes of blood!  Friday will be an extremely long day since Mom and I are making the drive home following treatment. My fabulous Mom rocks! She never complains about having to drive to NYC constantly...I think she would do it daily if it meant getting the best treatment available. My whole family would. Best support system EVER! I am very blessed. 

OK...I need some sleep. Or at least to pretend to get some sleep because, really, who sleeps before possible life changing appointments? Not this girl. 

XO!

Pain, Pain, Go Away...

I figured I should post a quick update on my health instead of just bitching about the tanning bed lovers! ;-)

Overall, I am doing good! I am still having some tummy issues...a little cramping...and some headaches. I have managed to get through the last week without a single nap! Of course by the end of the day, I am exhausted, but I do manage to sleep through the night. (I mean, besides my 100 pee breaks...smallest bladder ever!)

My main complaint is about my left shoulder/side of my neck. The pain is steadily becoming worse. It is still swollen. It hurts to wear my seat belt, forget wearing a bra strap, and God help you if you touch me. Even in the shower, the water hitting the front of my collarbone is extremely uncomfortable! You know when something is not right? I know something is not right!

I am praying, hoping, and wishing it is simply a part of the healing process! I have had some major trauma to my body. But, I also feel uncertain because I have not had surgery on that side of my neck since January...Why is it bothering me so much now? Is it because of the "suspicious" area that they are doing the biopsy on Thursday? I am anxious to see The Wizard because the pain is becoming more extreme. I just hope my Wizard can solve my problems like Dorothy's Wizard solved hers...even if that does mean I have to have a huge needle stuck in the side of my neck on Thursday!

Thankfully, my Wizard is much more attractive than Ms. Dorothy's! What fun would it be if he wasn't adorable along with being very intelligent? I have to have something to make this experience more pleasant...

**Just a few minutes after posting this blog, one of my loyal blog readers Kate left me a comment that said: "It's funny that you mentioned your Wizard and the power he has to solve your problems and I have no doubt he possesses these powers, but keep in mind The Wizard of Oz is about self-sufficiency. The Scarecrow, Tin Woodman, and Lion all seek external magic to give them things they already possess but fail to recognize. Maybe it is the same with you. No doubt you need the Wizard's medical magic, but perhaps you have something inside that will ultimately heal you and bring you to the other side of this!! Just a thought. Think of yourself as powerful." Boy, she made me feel GOOD! She is so right! We need to have total faith in our medical staff that they will make the best decisions that will grant us long, healthy lives. But we also need to have total belief that we have some control over this disease as well. As we see repeatedly, attitude plays a huge part in conquering good health. I am going to put all of my energy into believing that no matter what the biopsy shows, I will tackle it. I will win. Thank you, thank you, THANK YOU, Kate!

Off to the big City tomorrow! Special thanks to Miss Melanoma & the City, I am staying at her apartment tomorrow because the hotel rooms were absolutely ridiculous for tomorrow night. I am looking forward to seeing her & catching up! She has a big day tomorrow--scan day--so please say a little prayer for her. We are hoping for good news! God knows we need some this week...

BTW--melanoma has been mentioned every time I have watched the news over the last few days! PROGRESS! Check out a few great articles here: 

Glaxo's Melanoma Cocktail...

Matching Cancer Drugs to Gene Mutations...

A Baby's Skin Is No Match For The Sun

Melanoma Drug Helps Patients Live Longer

Distracted By Tanners!

I always feel extra bitter towards the tanning bed lovers on the weeks where I have big procedures, scans, and treatment. I always get the urge to walk up to them, flick them in the forehead, and scream, "LOOK AT WHAT YOU ARE DOING TO YOURSELF!"

However, I am far too polite for that.

I was walking through the grocery store the other day when I saw a young girl, maybe 20 years old, who I remember from the private school I attended years and years ago. Boy, she was TAN! Since we are friends on Facebook, I figure she has an idea of what is going on with me. I do tend to babble about it a lot...(Hey, people can either learn from my lesson or they can ignore me!) We made direct eye contact. I smiled. She looked at her feet. Maybe she hoped I would not notice her fake & bake lifestyle...Or honestly, maybe she does not care in the slightest bit what I think of her...whichever!. ;-)

Anyway----After seeing another young girl today, who I know for a fact is 5 years younger than my great 24 years, I reached the conclusion that tanning bed lovers not only look unhealthy to me now, they also look OLD! These beautiful girls look so aged and damaged! What about leathery skin is attractive? I understand liking the idea of a "healthy glow" but someone feel free to explain to me why people choose to help their skin become SO unattractive.

And for the record, I always thought leathery skin was fugly...even before I got diagnosed with Stage III melanoma!

I wish I could take these same girls on a tour of "Hotel Melanoma" (Sorry, Rich, you came up with the best name!) Let them go with us to hear the doctors tell us our cancer has spread, watch the doctors avoid eye contact while they share the statistics, observe the doctors stabbing us with a scary needle in the left side of our neck to check to see if the "suspicious" area is a tumor, to be cut on, stared at, and treated like a lab rat. Maybe then the tanning bed time would be eliminated from their lives.

I sincerely hope their tanning bed obsession is not something they end up regretting, but with all of the new evidence that shows the dangers of tanning, I may have a hard time finding sympathy. We all think it will not happen to us. I guess that is why smokers still smoke even knowing it leads to lung cancer...

Maybe I am bitchy today...

Or maybe my anger towards tanning bed lovers is just the distraction I needed today.

Prayer Request

Sometimes our friends need our help. This is one of those times.

If you have been in "Hotel Melanoma" (As my buddy Rich calls it!) for a while, you are probably familiar with Tina who writes PALE SKIN IS IN Her blog is actually the first one I came across when I began my journey. She has had quite the battle, but Tina has always kept her positive attitude...even on her hardest days.

Now she needs our help. Her Mom posted last night that she was being moved to ICU. Her heart was only functioning at 15%. Please pray for her strength and healing. Please pray for her family. Please send Tina and her family your thoughts, good juju, and prayers.

They are desperately needed.

Making the World Wait

"Please - when you get your next little glimmer of happiness or feel a small smile on your face, 

take a few minutes to be absolutely and completely selfish.

Go ahead and tell everyone to leave you alone for a bit

... make the world wait...

it doesn't matter what's going on, just take some time to dive into whatever positive thing you're experiencing; 

stretching it and milking it for all it's worth."

~Tim, another amazing warrior.

 

 

Advice From Someone Who Knows

When my Mom suggested I use the internet to meet fellow melanoma warriors, I had no idea how important of a role they would play in my oh-so-dramatic new life. We are each others cheerleaders, advice givers, and sometimes we are each others kick-in-the-ass. It is true that people who have not experienced cancer first hand have a difficult time understanding exactly what a cancer diagnosis means. Prior to the diagnosis, you worry about how you are going to buy a house, raise your babies, save for retirement. Once you hear the word "cancer" associated with your name, gone are the fears of how you are going to do it. Instead, you are desperate to be able to try to do it! No, I do not know everything about these friends. I don't know their high school sweetheart or their daily habits, but I know some of their deepest fears, darkest memories, and their latest scan results. Instead of cocktails, we bond over cancer.

We pray for each other. We advise each other. We have been known to shed tears of joy over the slightest bit of happy news. Oh, and when the bad times roll around? We "get" it. Sometimes I feel like it is harder for me to hear bad news about one of my melanoma buddies than it is to hear my own bad news. Maybe I get too wrapped up into their situations, I am not sure, but in the back of my head, there is always the thought, "Am I picturing what my life will be like down the road?"  Despite my own personal fears, I continue to pull for them. When I say that I would have lost my sanity by now without these people, it could not be more true. 


...which is why when my melanoma buddies give me great advice, I feel like I need to share it with everyone else who may be going through a similar situation. Following my last blog post, and I'm sure he has seen me mention it before, my friend (and fellow blogger: http://hotelmelanoma.blogspot.com) Rich sent me this message regarding my "woe is me" attitude:


"One of the unreasonable expectations put on cancer patients (expectations of people who DON'T have cancer and are clueless) is that we're supposed to be relentlessly positive and upbeat. Even when we feel lousy from treatment effects and we have upcoming scary medical events on our calendar. You're on an emotional and physical roller coaster ride with inevitable low points, and you needn't apologize to people in your life who can't deal with the dips. We all have our "woe is me" moments (yikes, we're human), and it seems to me that you do a very good job of pulling yourself out of the low points. Cut yourself some slack and forgive yourself for your bad days."

*Thank you, Rich.

Coming from someone who has some experience, being positive non-stop is exhausting. It is draining. It is FAKE. I have bad days. I have days where the slightest comment or the tannest (Is that a word?) person will infuriate me. I have days when I look at my friends and their newborn babies and pray I have the opportunity to have my own babies & raise them to have their own babies. (Yes, I plan to stick around for a while.) Then there are days when I could not be happier for the life that I have been given. Sure, I have a heck of a lot going on right now, hello cancer! hello break-up!, but I feel an odd sense of peace. I am realizing what I want out of this life that I have been given. For that, I am thankful.

Thanks to my confidence, and some back-up support from my melanoma buddy Rich, I will roll my eyes at the person who was fed up with my "woe is me" attitude. As Rich said, I needn't apologize to the people in my life who can't deal with the dips. The dips are all parts of this crazy thing we call life.

To Anne, Erin, Evy, Christina (x2!), Brandi, Becca, Rich, John, Paul, Kathy, Kate, Tim, and my other "unknown cheerleaders"

You are more than "melanoma buddies."

You are my friends.

You let me complain & vent,

and you sure as hell make me laugh,

and you're never afraid to give me a brutally honest answer.

You keep me sane.

And I, 

truly, 

would be a depressed,

paranoid, (more so!)

lonely lady

without each and every one of you.

Thank you. Thank you. Thank you.

Woe is Me?

I guess people really enjoy finding out about a break-up! Goodness, I had the most blog hits ever yesterday. Maybe it was just a coincidence... maybe! ;-)

 

The last few days were pretty tough for me, I will admit it, but I woke up this morning feeling like my old confident self. I have been beaten down by far worse than a heartbreak (hello, melanoma!) to let it ruin me. Quite frankly, I am tired of hearing that I have a "woe is me" attitude. I know I can complain a lot, but I am also trying like hell to stay positive about the uproar that my life has become. One thing I will not put up with is someone constantly trying to ruin the good things I sill have going for me. Anyway---we all deserve someone to be nice to us. I think it is time I move on to that.

 

Yesterday I got hit with some pretty intense side effects. For the last few days I had not been feeling so good. I felt run down, feverish, icky.  I have battled with "tummy issues" since the infusion which I did not expect since they told me it would be a while before I experienced (if any) side effects. However, yesterday there was little point in eating. I won't go into the disgusting details--obviously you don't need to hear that--but I have been put on a bland diet. No caffeine (heartbreak!) no spices, etc. Oddly enough, I feel so much better today! I feel rested. My stomach feels SO much better. Although yesterday was unpleasant, it was not that bad. It could have totalllllly been worse.

 

One week from today I will have the needle biopsy in New York. They will jam the scary needle into the left side of my neck to get a definite answer about the "concerning area." I seriously would rather have 10 surgeries where I am asleep than one while I am awake. I think I will just keep my eyes closed the entire time. Maybe I should bring the iPod to zone out. I will need some way of keeping myself from freaking the you-know-what out.

 

The following morning, June 10th, I go for infusion number 2! I will first meet with The Wizard, chit chat with him for a while, have 16 (!!!) tubes of blood taken from my poor hand, and then head over to the "Chemo Suite." This time I will know to bring snacks with me so that I do not feel so weak after they do my labs. Learned my lesson the hard way!

 

I am really hoping my tummy issues stay away. We are having a cook out with Dad's side of the family on Saturday. How can I go if I can't eat the seafood?! ;-)

 

Happy Thursday!

Breaking Up Ain't No Easy Thing.

So many of you emailed me yesterday concerned about the "personal hit" I wrote about on the last blog post. Unsure of what to say, I needed more time to think about it. This blog is my therapy, my online diary. Because it is viewed by people I actually know in real life, I was hesitant to write about this latest adventure without giving Mr. Spots a chance to defend himself. But, I wrote about the good and ugly times in the past. I must do it once again.

As of this past Saturday, Mr. Spots & I are no more.

I am not going to go into the details because I do not feel like that is fair to him. Let's just say that cancer, distance, and different priorities sure can ruin a relationship quickly. Although my heart is breaking, I fully support this decision. I do not think anyone can doubt my love for Mr. Spots, nor his for me, but we are not the couple we used to be. Gone is the fun relationship we had, and unfortunately, although we did try, we could not survive the stress of the last 6 months.

I love him, I wish him well, and I will always cherish him for taking care of me during the hardest months so far of my life. I sincerely hope he finds a (healthy!) girl to give his heart to. He has a lot of love to give.

This weekend I came across something Jodi Picoult wrote, "Maybe it did take a crisis to get to know yourself; maybe you needed to get whacked hard by life before you understood what you wanted out of it." Maybe that is what this experience has taught Mr. Spots and I...Maybe now we can peacefully move on with the rest of our lives, go after our true desires and goals without resenting each other for the pain that this experience has brought.

Until I make peace with this latest bump in my road, I think it is understandable I am a little sad.

(OK...a lot sad.)