Tuesday, February 28, 2012

Flu...Eww.

The stomach flu has hit our home. Since Saturday evening we have been a sickly bunch. I'm talking fevers, vomit, and well, you know...It has not been fun. Mr. Spots went to work today and has completely lost his fever, but I am still here in bed. My stomach is still rejecting all food; however, NO FEVER! This is progress.

If I had not been surrounded by people with the flu, I would question if this illness was related to Yervoy. I have experienced night sweats every night (fever related, I'm sure), the never-ending diarrhea, the joint pain, the fevers, and also this mysterious rash...It is again on the same place on my stomach as it was a couple of weeks ago. I haven't used any new products and I've only been wearing PJ's so there has not been anything rubbing, but still...there's the rash. It's making me scratch my head.

I am continuing to lose strength in my hands. Gatorade has never been easy for me to open, but it is actually impossible for me these days. Water bottles are difficult to open and I visibly struggle with them. I do not like it. In fact, it scares me.

Anyway, enough complaining. I would rather battle the flu bug OR side effects from a miracle drug than experience some of the things my Molemates are experiencing right now. I don't know how some of these folks gather their strength despite their battles, but they do, and they amaze me.

While I go catch up on some rest & try to hydrate myself again, I ask you to check out these blogs written by my friends. They each hit home with me.

http://melanomafighter.blogspot.com/
http://letsgivethanks.blogspot.com
Black is the New Pink
Hotel Melanoma


Have a happy Tuesday. Be sure to wash your hands...you don't want to catch this flu bug!

Friday, February 24, 2012

Struggling Hard

We still live in a society where folks believe one must be tan in order to be beautiful. What woman does not want to look her prettiest on her wedding day? Right, I can't think of one either. As I have mentioned before, I track the sites that send folks to my blog every now and then. Today I noticed I received  a lot of blog hits from a site called the wedding bee. Confused and curious as to why a wedding blog would send so many people my way, I clicked on the link. It was a post titled "Tanning?"


This post was a response to a previous post where women discussed how many weeks/months they should start visiting tanning salons so that they can get the best glow. The first post even mentioned the "healthy" way to use tanning beds: "to stay healthy and to not overdose UV, you should tan once a week (12-15 min), start with low intensity (2-3 times, really depends on how quickly you can tan and what your skin tone) than switch to high intensity." Out of 19 responses to this original post, only 1 person spoke up and said that tanning is dangerous. This brave soul posted: "no, to stay healthy you shouldn't tan. there is no such thing as a "healthy glow." tanning is horrible for you."


Woo hoo! In the internet world where it is easy for people to attack you simply for disagreeing with what you believe, I find this person who stated the truth about tanning beds in a post filled with tanning bed lovers  to be very brave.


This same brave soul could not let the tanning bed discussion end even though backlash from the tanners was possible. The Bee writes, "i hope i don't get slayed for this, but guys why are you tanning??? it's so bad for you. as someone who works at a cancer hospital, i have a hard time grasping why people smoke or tan- both things that are 100% known to increase your risk of some really horrible cancers. no one leads a 100% perfect lifestyle, but there are some things that are pretty obvious. i suppose it's living in that "it will never happen to me bubble."


The determined Bee does not stop there... "I actually stumbled onto this girl's blog today and last year, she was all of us. 23, pretty and going about her happy life with her boyfriend. then she was diagnosed with stage III melanoma (with no history of bad burns, just tanning). and she's certainly still really beautiful, but she's had a rough road with multiple surgeries and chemo. and she freely admits that melanoma is terminal. as in, there's no cure. it's NOT WORTH IT."


The Bee is right. Just a little over a year ago, I was a normal 23 year old. I was enjoying life with my first live-in boyfriend, I was bonding with his child, and I was really in a happy place. Then I met Melanoma, and BOOM. What people do not realize is that even though my life is a lot less stressful these days, it will never be like it was before. Until an undetermined time, I will still have scans every 3 months to see if the melanoma has spread to my organs. If I am one of the lucky ones, I may reach a point in my life where I only have to receive CT scans once every 6 months. I will still go for treatment for the next 2 years. I will continue to hope and pray that I never advance to the next stage of Hotel Melanoma: The last and final stage---Stage IV. 


What were the responses from Brave Bee's post?

"I'm tanning for just a few weeks because I feel I'll look more healthy and I'll look nice and slim. I know this is completely ridiculous given the seriousness of what you just posted but I normally don't do it and I do get skin cancer screenings every year at the end of summer."
^At least this person is realizing how ridiculous she is being....AND at least she is visiting a dermatologist. Early detection is key. Melanoma IS curable when caught early.

"I actually just started tanning today, only because I do not want to burn to a crisp from being soo white on our cruise:) Gradual beats sudden exposure!"
Excuse me while I roll my eyes. Been there, girlfriend, look where I am now.

Brave Bee responded to these to posts: "i just ask that you read her story! i don't know her, but was just so taken by what's happened to her in the last year. limited exposure and sunscreen beats gradual." (Best response ever.)

Another response: "Definitely didn't tan before my wedding...and definitely don't plan on ever tanning! NOT worth it! Thanks OP! :)"
^This is what I like to hear!

"Its ok I understand..lol To each its own when it comes to ones body :) Some people can tolerate it some can not. It is a risk.."
^I want to yell at this chic. I tolerated tanning just fine, missy, until I got diagnosed with melanoma at age 23--less than 2 years after I stopped visiting tanning salons! You may tolerate tanning beds just fine right now. How will you tolerate telling your new husband that his bride has melanoma? How will you tolerate listening to your mom cry because she can't help you? How will you tolerate the doctors looking at you and saying "We just don't know."? So, yes, you may tolerate tanning beds right now, true, but what happens when your body fights back?

Ah, another intelligent person: "OP - I don't get it either. I tanned a few times back in high school when I was young and dumb. Never since. My grandmother passed away from melanoma. She was 44 and I never knew her. I am pale and I don't care. I don't care if I look washed out or like a piece of white paper. I am supposed to be that way! Id much rather be pasty looking than get skin cancer! I, like you, cannot understand how/why people go tanning. There isn't such a thing as getting a base. It's called use more sunscreen, wear a hat and a long sleeve shirt and stay out of the sun. We went to Jamaica for our honeymoon and I was out in the sun for several hours in the middle of the day and never got burnt - because I am really good at reapplying sunscreen. Same thing for our cruise. I just can't wrap my head around it."

And another response:  "My dad had melanoma (which was luckily caught early and removed without any radiation or chemo, he was very lucky) so I am fully aware of the risks.  But I accept going to a tanning bed this one last time (honestly, I don't care about tan lines any other time, and I tan easily so I don't worry about burning on my honeymoon or vacations).  I get regular screenings and use preventative care 90% of the other times I'm in the sun. I don't think that me going to a tanning bed a handful of times is going to dramatically increase my risk anymore than it already is, I tanned a lot as a teenager, got bad burns from the sun, was outside constantly, never wore sunscreen etc... I'm already at high risk since my dad has had it and I have a lot of moles... It's a calculated risk I'm willing to take this one last time."
^ There are so many things I could say to this bride. Instead, I'm just going to say this: Everything that YOU described, YOUR dad's history of melanoma, YOUR severe burns, YOUR tanning bed use, etc, all put you at a HIGH risk for melanoma. I hope YOU don't live to regret your laid back attitude about the dangers of melanoma. Your dad was a lucky one. Will you be? (see uncontrollable risk factors here.)

(If you haven't noticed, I have a big problem with people who have been directly affected by ANY cancer--especially lung and melanoma--and continue to do the things that directly cause said cancers. I find it to be disrespectful and ignorant.)

 This post sent a lot of people my way today (Thank you, Brave Bee!) so I can only hope that some of these newly engaged females will think twice before signing up for a new membership at Free Skin Cancer Salon. It makes me so bitter and angry because these women want to look pretty on their wedding days. To look pretty, they believe they must be tan. I, and many of my fellow melanoma warriors, simply want to live in order to be a bride..and a mother...and an old lady. 

Ironically, I opened my fortune cookie tonight and it read, "Struggle as hard as you can for whatever you believe in." I believe in Melanoma Awareness and I will struggle against society until I can struggle no more. 


***A special thank you to the special member on Wedding Bee who took a chance and shared awareness. Who is to say how many lives you changed. Thank you.



Wednesday, February 22, 2012

Tanning Bed Gossip

Tanning salon owners are not having an easy go of it lately. Folks are spreading the dangers of tanning beds in all kinds of different places. We have an article on a famous magazine's website, states are trying to pass bills that will prevent teens from visiting tanning salons, and top modeling agencies in Australia have a strict 'zero-tolerance' policy on the use of tanning beds. I am sure it sucks to be a tanning salon owner right now. For us in the melanoma world, this is progress!

Cosmo recently published an article about the lies that tanning salons will spread. Oh, it is interesting... It discusses a survey that was conducted where 300 salons over the country were visited. 90% of the salons visited said that tanning beds would not harm your health. 51% of the salons said that tanning beds did not raise your risk for tanning salons. It is unbelievable to me that tanning salons get away with such lies, but I'm sure tobacco factors got away with it a few years ago too. Read more of the article here: http://www.cosmopolitan.com/celebrity/news/tanning-salon-lies-020712?src=soc_fcbks

Maryland and West Virginia are becoming very close to passing a bill that will prevent teenagers from using tanning beds. Woo hoo! If the state regulated this, how many lives will be saved?! I know that some people argue that parents should control what their children are allowed to do. Parents should be involved enough with their children to know that tanning isn't safe for their JV cheerleaders, future movie stars, and little divas. Then you hear reports like this one that shows that some children need to be protected from the parents. Idaho is trying to pass a law that will keep minors from visiting tanning salons. In obvious protest against this law, Colleen Skaar, a owner of 2 salons has spoken out. Skaar believes that folks in Idaho do not receive enough Vitamin D to keep their "bones healthy." Skaar is so willing to put all of her confidence into the safety of tanning beds that she began a tanning regimen for her 4 year old grandson.

Yes, you read that correctly.

Oh, oh, oh...Colleen Skaar also reminds folks, Dr. Oz supports tanning beds.

Gag.

The more that the media talks about tanning bed dangers, the more people will begin to question just how safe those beds are.

Keep talkin', folks, keep talking.

Tuesday, February 21, 2012

When Bridesmaid Meets Groomsman

When you think about how much your life can change in just moments, it really is incredible. This week is the 2 year anniversary of meeting my Mr. Spots. In really sappy fashion, I want to share a few special memories with you...

The famous question: How did you meet? Well, it all started with a wedding...






The bridesmaids and the groomsmen did not know each other. We were a group of strangers there to honor our best friends. The bride and groom really choose the best people to have in a bridal party. Not to toot our own horn, but we are all pretty awesome and we could not have gotten along better. No awkward moments for this group!

To sum it up, the groomsmen and bridesmaids bonded....quickly:





Sometimes people just click.... This was one of those times. (Even without the cocktails!) 

After the wedding I tracked down Bryan's phone number from the bride and decided to send him a friendly text. I can't explain to you why I needed to reach out to this groomsmen, but I did. I told my sister that weekend that he intrigued me. I guess that is the best way to describe it. He caught my attention--which is, believe it or not, hard to do.

It did not take long before we were talking all of the time. I was living in Richmond, Virginia at the time, he was in Roanoke, Virginia. Only a couple hours apart, we started innocently spending time together. It only took a few months before we decided we had something special. I remember being at his apartment one day, getting ready for our date, when my older sister texted me. She said, "Are you in love with him?" I realized, to a shock to myself, I was.

The day he told me he loved me for the first timse, I replied---so he claims--"Ooh! My car is dirty!" 
(Have you noticed I don't respond to serious situations in the predicted manner?)

In just 2 years, we have gone from strangers, to friends, to a casual couple, to a couple seriously involved with the addition of his 2 year old son, to a living-together couple, to the couple battling cancer, to the broken-up couple, to the couple who found what they needed from each other. Way to rush through our relationship, huh?

It has not been easy. Between dating long distance, learning to be a blended family, finding out about my cancer, balancing life + cancer + the new me,  nothing about our relationship has been easy, except for our feelings for each other. You never know how you are going to respond to a situation until you are forced to respond to it. We have had problems, we have had some pretty nasty fights, but like I have told others, we haven't had a guidebook. We never knew that we would face so many obstacles so early in our relationship. We have faced things in the last 2 years that some couples will (hopefully) never face. There were some dark moments. Still, we found our way back to each other...happily.

You never know when you will meet your one. However, I am a firm believer that when you meet him, you will know.

I knew.


(A big thank you to my one of my best friends, Rayna .Not only did I have the honor of being a part of your special day, I also made my own special memories. I will always treasure that weekend. It was, in one word, epic.)


Thursday, February 16, 2012

Thoughts







“There is so much about my fate that I cannot control, but other things do fall under the jurisdiction. I can decide how I spend my time, whom I interact with, whom I share my body and life and money and energy with. I can select what I can read and eat and study. I can choose how I'm going to regard unfortunate circumstances in my life-whether I will see them as curses or opportunities. I can choose my words and the tone of voice in which I speak to others. And most of all, I can choose my thoughts.” 
 ~Elizabeth Gilbert




Think about it.

Monday, February 13, 2012

Who Needs A Tattoo...

when you get a new scar every 3 months? These scars are my own version of body art...

I went in for my 3 month skin check with my favorite dermatologist today. If you haven't gone for your full body skin check yet, call today and schedule it. Let me give you a warning though. Be prepared to have no part of you unchecked. I mean, NO. PART. OF. YOU. I escaped the in-between-the-cheeks and lady bits only because I promised I check those areas myself. He knows that I am extremely paranoid about my moles, I believe he trusts me. So, yes, the exam is awkward. Yes, I have made the mistake of forgetting to wear full underwear and made the visit even more awkward. However, the awkwardness of it is so worth it.

Mr. Spots took off work today to attend this appointment with me today. I was grateful for him being there because going back to the place where I was first diagnosed is always a bit uncomfortable for me. Bad memories! Anyway, Mr. Spots mentioned my blog to the dermatologist today. The dermatologist made an interesting comment: "I hope I have been good to you." My immediate response: "You saved my life." Silence.

It is true though. He removed the mole because he was not 100% sure about it. It looked unusual, but none of us believed it was melanoma. Isn't that how most stories start out? "They told me it was nothing to worry about..." Had I continued on with life after the scab on my mole went away instead of visiting the dermatologist--thanks to the boyfriend I kept my appointment-- chances are the melanoma would already be in my organs. I mean, think about it, it had already spread to numerous lymph nodes on opposite sides of my body. Removing that mole really did save me. It allowed me to be diagnosed with Stage III melanoma, not stage IV, the last and final stage of melanoma.

I didn't escape the dermatologist this time. He removed another suspicious area:


My skin is not a fan of the adhesive on the bandages. As soon as we got home, Mr. Spots pulled off the bandage--it's on my lower back--and washed the area for me to try to prevent a repeat of past events. However, the rash is already forming...I must remember to tell them NO BANDAGES next time. (And we all know there will be a next time! Better to be safe than sorry!)

Oh, and good ol' "And.Them" is back to playing games with me. For some reason when my doctors call/look online to verify my insurance, my insurance company says I do not have coverage. When I call, or when the "And.Them" representative who works with our company calls, I have and have always had coverage. Needless to say, this makes my life difficult.

...which leads me to having one of these with lunch!





I am going to go enjoy the rest of my Monday off by trying to find a comfortable position on the couch and reading my book. 

OH, one last thing!! We stopped to get a movie at Redbox and Mr. Spots noticed that even Redbox has to wear sunscreen.




If Mr. Redbox needs to wear sunscreen than SO DO YOU.

Happy Monday! XO


Saturday, February 11, 2012

I'd Rather Be Pale...

 ...is music to my ears.

I am the girl who gets excited when I receive an email from an old co-worker who tells me she has scheduled an appointment with her dermatologist. I am the girl who is thrilled when an old enemy emails me just to say she will never step foot in a tanning salon again. I am definitely the girl who loves hearing that her tanning bed loving friends received the A-OK from their dermatologist.

Today is a cold, super windy, lazy Saturday. So, of course, Mr. Spots is playing video games and I am reading and Facebook stalking. Today I randomly came across something that angered me and inspired me.

A girl from my hometown, almost a stranger, had posted that she was going to get a spray tan. The very first comment in response to her status update said something about how spray tans will give you stripes and the person advised, "Just go to the tanning bed." The next comment was the complete opposite. It said something like, "Don't listen to Wrinkles. She'll be sorry when she's 40 and looks like she is 60. Get the spray tan!" The girl who originally posted the status shared my story and said, "I have too much to live for...her story and reading her story opened my eyes...I'd rather be pale than have cancer :)"

Success!

Not only is this young mother staying out of tanning beds, she's also not giving into the pressure of her peers! Woo hoo! This makes me ridiculously excited.


Sometimes when I start to think that sharing my story, posting things far too personal to share with strangers, and annoying my friends and family with "Wear sunscreen!" lectures, I see something like this that makes me remember people are listening.


I know that my purpose is to save others from the hell that is melanoma. I hate that it took an actual diagnosis for me to learn the seriousness of melanoma and to find one of my purposes in life, but I know that this is it. 


I will not stay quiet. For me, remaining quiet about this cancer would be giving in to melanoma and I refuse to ever do such a thing.

Thursday, February 9, 2012

Livin' It


This is my way of apologizing for not writing lately. Life has been busy with non-melanoma related activities (also known as work and little else!) I don't know if it is the stress from work or maybe a side effect of the drug I am possibly receiving, but by the end of the day, I have no energy left. I have been completely worthless every evening. Poor Mr. Spots has been stuck cooking (normal) and cleaning (not normal) all by himself. He has yet to complain..I am thankful.

Yesterday I experienced something I wish I had not have had to cross of my non-existent bucket list. I had a gun flashed at me by an angry patient at work. Do you know what I did when he flashed the gun, while saying, "You don't argue with a man with a gun."? I laughed. Not a ha-ha-ha laugh, but a nervous chuckle, and replied, "Definitely not." I think he was simply trying to intimidate me, I don't think he was going to actually harm me, so I went about my job without causing a scene. All I could think was, "You have got to be kidding me."

And then I thought "Why do I always laugh when scary things happen?" As you may remember, I actually laughed a ha-ha-ha laugh when the dermatologist told me my mole was melanoma. It was a bit awkward when the nurse had to stop me from laughing and tell me that he was actually serious. Oops.

Is anyone else realizing that my life is really starting to resemble a soap opera?

Even with the crazy aspects, the no good days, the stress from work, I know that I am so lucky to be here living a normal life with normal every day problems. A day when I can complain about a rude patient or a sore throat is a good day for me.

Life certainly has changed.

*Oh, I received an email from a very sweet young lady who thought I would enjoy listening to this interview of a stage IV melanoma warrior and her experience with a clinical trial at Sloan Kettering. Thanks, Annika! I really did find it interesting!)

Monday, February 6, 2012

Bob Marley





Did you know that our famous
Bob Marley
died from Malignant Melanoma at only 36 years old?



Today would have been Mr. Marley's birthday. In his honor, check your skin & jam out to his tunes.

As if I need to remind you, melanoma is not just skin cancer.


Saturday, February 4, 2012

World Cancer Day!

I am feeling much better today! The suspicious thing popping out of my neck is completely gone! The nodes behind my ears are still swollen but the pain is NO where near what it was yesterday. Apparently a few extra hours of sleep and a stress free morning will do wonders for my body.

I hope you have a wonderful Saturday...

Oh, and remember! It is World Cancer Day. Honor those who have been touched by ANY type of cancer in some type of way. Schedule your yearly exam, stop smoking for good this time, grab a partner and check your boobies and skin! Do whatever you can do to live as healthy as you can.


Friday, February 3, 2012

Welcome Back, Ms. Frankenstein!

I recently posted about a lymph node on the left side of my neck that had been swollen, disappearing, then it showed its ugly face again yesterday. Today, that lymph node had friends join her. Please excuse my ignorance, but I had no clue until today that you have lymph nodes behind your ears. Huh. Swollen lymph nodes cause me concern because it could mean infection or the big C. I can handle swollen lymph nodes for a few days because they usually go away. However, today I had a suspicious "area" pop up that caused me to call both sets of doctors: The Wizard in New York and Dr. Bad Mustache in Roanoke.





When I explained the symptoms--swollen lymph nodes, the sensation that my throat is closing, and the suspicious tumor/vein looking thing, she immediately called me back and said, "How fast can you get here?" Off I went.

I went first to the lab for blood work (no results yet...they aren't as fast as Sloan Kettering!) and then headed over to see Dr. Bad Mustache, who I had not seen in a year. It was nice catching up with him and hearing how interested and up to date he was on my medical history. Sloan Kettering has been sending him reports and it looks like he actually takes the time to read them. (Maybe he read them right before he walked in, either way, he knew who I was and what I am doing.)

Anyway, Dr. Mustache looked at my neck and said, "No need to ask why you are here." Ding. I do look like Frankenstein! At first glance, he was concerned that it was a blood clot. Once he started pushing around (ouch!) and actually examining me, he believes that the reason I am having all the inflammation is actually due to a response to the drug I may possibly be receiving. He said that although it hurts, this swelling is a good side effect.

Here is how he explained it: Yervoy is an immunotherapy, we want it to boost my immune system into kicking melanoma's ass. Because I have so few lymph nodes remaining in my neck due to the 3 surgeries, the lymph nodes that I do have left have to go into overdrive. He believes that the swollen nodes are a sign that my body is responding to the drug.



As far as the swollen tumor/vein looking thing? It is NOT a vein. He is not 100% sure what it is... He said that I have a lot of damage to my neck due to the surgeries and that we will keep an eye on it. If it is not better in a week, it will be ultrasound time.

Until then, I am going to chill out on the couch, wear a scarf, and eat things like mashed potatoes and ice cream. I am hoping soon I will no longer feel like someone is trying to strangle me.

Oh, the joys of Hotel Melanoma.

Do. Not. Tan.