Now batting...#5!!!

The 5th Annual MelaNoMo'! will be held (appropriately) on the 5th of October. Today is August 5th. So see you in 2 months. High FIVE!

I would say that quite a lot has happened in the past 5 years. I remember going into my first surgery around 5 am in the morning and one of the top songs on the radio at the time was called "bleeding love". As we were pulling in to the surgery center the words, "I keep bleeding, keep, keep bleeding" were echoing through my head. Thanks Leona Lewis for the uplifting message.

We are so grateful for all of the incredible support that we have received these past five years. We just wouldn't have been able to get through it with out you.  And again, the main reasons to host MelaNoMo'! is for everyone to get together and celebrate life, live in the moment and say thank you.

We feel like we are spreading the word about melanoma and the severity of the disease. Doesn't matter male, female, white, black, young, or old. It can really effect anyone at anytime. Two things have to happen to create MelaNoMo!,aka, "no more melanoma" 1. Awareness. 2. Generate funds to create more treatment options for current patients. This is our goal for MelaNoMo'!

Like I said earlier FIVE YEARS. We are truly blessed. We have met so many wonderful people through "electric cancer avenue". In tribute to the fifth year we are honoring five different people/charities that we have been touched by during our journey. All of the proceeds from this year's event will go towards(or in honor of):

1.)Phil McGil- A great college friend and prime example of how to live life. Currently playing poker in heaven. (A portion will go towards Philfest's "phil"anthropy, September 14th in Athens, Ga).
2.) Heather Hampton- fellow melanoma warrior/Georgia Bulldog/friend. A living example on how God wants us to live. (A portion will go towards Emory Winship Cancer Institite)
3.) Julie Neff- My nurse at Winship.  While helping so many others fight cancer, she was fighting for her own life. (A portion will go towards Emory Winship Cancer Institute)
4.) Cameron- 14 year old fellow melanoma warrior trying to live as a normal teenager, while battling stage 3 melanoma. He's supposedly has mad bball skills. (A portion will go to Egleston Children's cancer research)
5.) First Descents- a wonderful program: kayaking+cancer=living. www.firstdescents.org

OUR BOY FREDDIE CRANKING ONE OUT WITH THE #5!!

Freddie Freeman is a huge Melanoma Research sponsor, as his mom passed away from this horrible disease.  He is the man.

For more details on this year's event and how to donate please visit www.melanomo.org

This is not the year to miss!!

MelaNoMas!

MelaNoMo'! will be hosting the 5th annual fundraiser this fall. 5 years!! Over $60,000!! Thank You!! Or should I say Gracias?

There is only one way to bring in the pinnacle 5th year of MelaNoMo'! That is  mexican fiesta style. Mis amigos and familares please save the date for:

MelaNoMaS!

October 5, 2013

The event will be held at our beautiful cabin on the 'Hooch in North Ga and will be from 1 pm-Siesta. The amount of support and funds raised is overwhelming, but the outcome can be surreal if we can continue to raise awareness for melanoma, create more options for late-stage patients, and find a cure. Despite the growing incidence of disease there's still a huge lack of funding to find a cure.  We have made progress up the hill, but there's still a mountain to climb. So come join us for some cold coronas on the river and put an end to this disease. No more Melanoma, man(in spanish accent)...MelaNoMAS.

My fellow melanoma warrior and friend Heather Hampton and her husband Steve know first hand the trials and tribulations of this disease. She is such an inspiration to me and so many others living her life the way God intended and using her battle to help spread the word. When asks what can we do, the simple answer is "pray". So please follow her blog and pray for her and her family as they beat this disease.

You can follow her blog here:http://www.caringbridge.org/visit/heatherhampton





Adios!



"Phil"osophy

The word philosophy come from the ancient Greek, which literally means love of wisdom. A philosopher is understood as a wise man.  "Phil"osophy is this above plus so much more.

"Phil"osophy: a lifestyle we should all try to strive for everyday; a badass fighter full of wisdom and light; a hell of a poker player dealt a shitty hand of cards. As the majority of hands don't go to showdown then it is logical that you need to play what you represent, not what you have...This is my buddy Phil.

If you are from Athens, went to UGA in the past decade, or even have a friend of a friend that went to UGA you probably know Phil. And if you know Phil, you most likely love Phil. There's not a bad thing you can say about this guy; I mean he is the man. He is the definition of living life to the fullest- a "Phil"osopher. He has been battling cancer since I have pretty much known him, close to 10 years, but by any means never let that slow him down. Cancer was never the topic of conversation with Phil because you would rather hear about his latest Odyssey or poker winnings.  The man has got some stories.

Phil has never missed a MelaNoMo'! in the 4 years that we've had them. He is always one of the first to arrive and last to leave. At the first event sitting around the fire after a few beers Phil and I briefly discussed our battle together stating that cancer sucks, but took comfort in the fact that two friends in their mid 20's were fighting it together, and are going to beat it together. And Phil, congrats my friend you absolutely did not let cancer win. You are inspiration to me and so  many others.

MelaNoMo'! this year will honor the "Phil"osophy we should all strive to be everyday.

"Concert for a Cure"

DIET CANCER: I intend to make light of cancer. I intend to find humor in it. I intend to make people laugh at me/with me.
These were my intentions when I started this blog on March 23, 2011. I was in an oncology waiting room in Tampa, FL and the only thing I had in common with the other patients were tumors. I thought to myself, "What a joke!" So I started Diet Cancer.

Different angle needs to be taken this afternoon to honor a fellow melanoma WARRIOR that lost her battle just a few weeks ago. She was 25. Her family has reached out to me and I feel so much gratitude towards them, but also to all my supporters. We are doing what we set out to do and getting the word out that melanoma is no joke.

Her family is set out to make a difference and hosting "Nikkis birthday concert for a cure" in May downtown Snellville that will benefit Emory Winship Melanoma research. They said that Nikki was planning on becoming an advocate when she got better and will be smiling down on this event in May proud to see her family and friends gather together to celebrate her life.

I will post more info on the event as it comes. Below is a link from the Gwinnet Daily about Nikki Rouis:

http://www.gwinnettdailypost.com/news/2013/feb/20/hammock-rouis-remembered-fondly-for-soccer/?sports

Toast to another GREAT year

Given that the Mayan calender prediction of the worlds demise doesn't come to be a reality in a couple of weeks. I would have to say in my 27 years, 2012 will go down as one of my favorites. Yea 2003 was great and who can forget 96, classic. But through my personal experience my favorite would have to be 2012. In no way am I complacent, but just truly grateful. Happy holidays to everyone! Here's to HEALTH, WEALTH, and, HAPPINESS.

MERRY XMAS FROM THE GAINES'



Octoberfest

October is here and there is much to celebrate!:

Dawgs are 5-0
Braves locked up wildcard
Falcons are 4-0
Columbus Day
Leaves
Raking Leaves
Leif Erikson Day (the real discoverer of the new world)
Pumpkin flavored stuff
Halloween
Adam Strong Bday
The CornTastle

Oh and these things as well:

-Annie Kate Gaines will turn 1 month old on 10-4-12.
-MelaNoMo'! is 10-20-12
-Just over a year of No Evidence of Disease.

MelaNoMo'! is right around the corner and I hope that everyone can make it up. I have been knee deep in diapers and no sleep so I am looking forward to celebrating this great month of October with all of our close friends and family.  We are teaming up with Winship Cancer Center this year to help contribute to Dr. Lawson and his medical staff to fund more clinical trials for melanoma that would be available on a local level. We contribute being "NED" to the great staff at Emory University and are happy to contribute to this great melanoma research group. 
Also MelaNoMo'! is a tribute to all of those people that supported us through thoughts and prayers and got us to where we are today(a healthy but exhausted family). We can't thank you enough, but we can start by getting you an afternoon buzz, eating BBQ, watching college football, and listening to some bluegrass music outdoors around a fire by the Chattahoochee River on an October afternoon.
Look forward to seeing you there, 10-20-12. more info @ www.melanomo.org

Save the Date 10-20-12

My scans were clear in June and MelaNoMo'! date is scheduled for Oct 20th!!!! Hope all have a great 4th of July/hump day.


Sun safety tips courtesy of www.theonion.com. Disclaimer: for any of the baby boomers generation this is a joke. Enjoy:

Sun Safety Tips

When summer rolls around, everybody wants that perfect tan--but it's important to play it smart. Here are some tips for safe, sensible tanning:

• Block out harmful UV rays with giant magnifying glass
• Always sit at least 100 yards from sun
• When applying sunscreen, get children on the beach to help with those hard-to-reach spots
• UV rays can damage the corneas; don't forget to rub a good sunscreen into your eyes
• Risk of sunburn is especially high while swimming; strap on a thick lead suit before entering water
• Instead of using our sun, sunbathe using safer, more distant star like Beta-Sirius
• When tanning, always alternate who's on top
• Avoid harmful UV rays; live underground until your descendants evolve into eyeless, albino mole people
• Before going outside, check sun's strength by placing test baby in driveway for 1/2 hour
• Stabbings, while tanning or not, are very dangerous—avoid them
• For those raised in a red-sun environment, yellow sun may cause superpowers; use only for good
• Tanning is safest when done in short spurts; disrobe for just a couple of seconds every few blocks while walking through town
• Allow thick, protective melanoma to grow all over skin
• Avoid suntanning on inner planets like Mercury and Venus
• Coat body in "seagull-nip"; wait for protective coat of seagulls to cover body

Baby G!

The last blog entry was on March 4 and I was having scans and finding out if I was having a boy or a girl. So...clear scans and girl!!!! Yes sir.
Baby Gaines is about halfway done brewing, our due date is ironically Labor Day. There are usaully 3 questions people ask, "Are you excited?", "Do you know the sex?", "Have you thought of names?". I am so excited that we are having a girl and we have some names picked out but will not surface until she does. Marge is doing such a great job!!

We don't have a date in the books yet for MelaNoMo'! 2k12 but it might be the debut for Baby Gaines. It will be in late September or October.  She told me that it better be the best one yet since it will be her first MelaNoMo'! So let's make that happen. Check out the link from the MRF website talking about last years event.
http://www.melanoma.org/learn-more/third-annual-melanomo-fundraiser-raises-over-30000-melanoma-research.

Busy week?

Alright, it's Sunday March 4, 2012. First day of the week that will be one for the record books. Tuesday, I am having follow up scans and blood work. I am ready and confident for this appt and can get excited to go see my oncologist because I can get the reassurance that everything is still looking NEDtastic. (No Evidence of Disease). I have no new lumps or bumps to be concerned about.
Now, I can not say the same thing for Mrs. Gaines. Wednesday we will be at a different doctor where Margaret is going to be the patient. She is the one with the bump now, but it is a good bump and it's growing inside her stomach.  Wednesday we will hopefully find out if we are having a boy or a girl. There is a baby Gaines on the way!!

Alright, Sunday has been circled on our calender for weeks and we finally meet. The calender week page is inked up with blue and black. It is full of times, places, highlighted days, exclamations, and question marks. We are excited and anxious to meet this head on and turn the page to another week of life.

So on this Sunday send us some thoughts and prayers for a good strong healthy week.

this year I will....

Happy belated holidays from Diet Cancer.
2012 is finally here and I know it's a going to be a great year. We ended on a high note in December and want to carry the momentum forward.  There's a lot of good things happening this year so lets live it up, I mean if the Apocalypse is really coming in December we have to go out on a high note. Don't hold back, just wear sunscreen.
 It's official MelaNoMo'! INC. is now a non profit company. We are  up and running and wanted to thank Gary Arnold,  the Caswell family, Milner family, and also the  Owings brothers at the Ozone Sports Institute to be the first contributors to MelaNoMo INC. We have laid a great foundation and plan to expand this year beyond our annual BBQ, to have a kayak race, pub crawl, and more. It's a whole lot more fun to raise money doing something you enjoy (eat,drink,kayak).   The website is under construction, but will be up shortly where there will be pictures, videos, posts, and other melanoma survivors testimonials. It is melanomo.org and we expect it to be running in February.
 I'm sort of a procrastinator so I set my new years resolution starting February 1st. Anyway it's just amateur hour at the gym so I'll let them thin out and then I will be back getting into that new years shape.
Also it's is very important to pay attention to the blog and website in the near future to what MelaNoMo'! will have to offer later in the year. It is going to be groundbreaking and will definitely add that "winning touch" to melanoma awareness and prevention.

Here's a tribute to all who have attended our fundraisers over the past 3 years, watch, enjoy, and judge.
http://www.youtube.com/watch?v=wcHR3fZhwB4

NED

NED..  NED RYERSON. "Needlenose Ned"? "Ned the Head"? C'mon, buddy. Case Western High. Ned Ryerson; Bing!
-Groundhogs Day

Groundhogs day is a classic that you either love it or hate it. I love it, Margaret not so much. Am I right or am I right, am I right, amirite?

We definitely had some groundhog days earlier this year in the battle. But we did it! We didn't just go through the motions in fighting this. We knew we would do whatever it takes and took a proactive route to find out what is the best path.  How can a disease with so few options have so many life altering decisions? Emory or Moffit? Moffit or MDA Anderson? Surgery/no surgery? IL-2 or TIL? Cream or sugar? Beatles or Stones? You can really drive yourself crazy second guessing yourself when dealing with something as serious as this, but when you have faith and choose a path knowing that it's in Gods hands and do it without looking back it's a powerful feeling and even more so when you get the results that you wanted. 

Our hopes going  into the appt on 12-6-11 were that the tumors were going to be stable. This was not the case. The tumors were gone. I don't have cancer. That's a good x-mas present. That was the results that we wanted.

We started our fundraiser in 2008 called MelaNoMo'! That name sounds fitting to me now and I plan on staying MelaNoMo'!  The battle is won but...... We will continue to be monitored closely by oncologist and dermatologist shooting for that pinnacle 5 year mark.  But for now I will take being NED (no evidence of disease).

I have to thank everyone who kept us in their thoughts and prayers. Some of you did something right so keep it up.

Vocab word of the day

New word for people not familiar with melanoma
NED: no evidence of disease!
Neil Gaines: NED!!!

PET of the week.

According to dictionary.com: 
PET:

1.any domesticated or tamed animal that is kept as a companion and cared for affectionately.

2. a person especially cherished or indulged; favorite.

3.a thing particularly cherished.

 

In this instance I am going to go with definition number 3. In a week from today I am going back to Emory to have my follow up thing particularly cherished Scan. I have been a pet lover my entire life because a  pet can bring so much joy and life to someone. So a PET scan will be no different come next Tuesday when I am sitting in that same stupid patient room that has a horrific melanoma poster, next to one of those one-word posters like, Attitude or Preserverance, and then a butterfly painted on the ceiling(I stare at all 3 and get confused). But when the doctor or nurse can come in  and say everything looks great, it brings joy and life in  every meaning of the word. So I look forward to getting a thing particularly cherished scan next week. I am thankful for all of the prayers and keep them coming. Go Dawgs.

 

 

 

 

Dog Days

"I think we are drawn to dogs because they are the uninhibited creatures we might be if we weren’t certain we knew better. They fight for honor at the first challenge, make love with no moral restraint, and they do not for all their marvelous instincts appear to know about death. Being such wonderfully uncomplicated beings, they need us to do their worrying."
 ~George Bird Evans

If you have kept up with this blog then you have heard me mention Stoli aka Wild Man. The only thing that is bigger than his head (or balls) is his heart. He will literally cry when you walk into the house after work. Imagine if someone or something made you that happy. How weird would it be if I cried everytime I saw Margaret, or friends or family? He loves people that much. There is something about this dog, or anydog that can just make you forget about stress at work, money, or dealing with cancer. I don't know what it is but, I wish we all had it.

Jennifer Arnold(margaret and I's aunt) might have the answer to this. Her second book came out today and is a must buy for any dog lover. She is the founder of Caninne Assistants, a non-profit which trains dogs to assist people with varying disabilities. She does amazing things for humans and human's best friend. This would be the ideal gift for the holidays and a great heart warming read. It's called "In a Dogs Heart." Please check out the link.
http://www.tabsite.com/Canine-Assistants


90% of the pictures on my phone are of my dog, enjoy:



Stoli hoggin the window from Chauncey



Blood Mtn

spoiled!

Birthday visit @ Emory

@ the beach.

Gameday

Chauncey is almost human

Stoli catching up with neighborhood pal.

"Oh Happy Day"

MelaNoMo'!

It was just an idea that Graham and I brewed up over 3 years ago to create an event to bring family and friends together at a scenic venue for a common cause. I was knee deep in interferon and the side effects that come along with it, so I was unable to work full time but I felt the need to do something proactive about melanoma in a fun celebratory style.

Who wants to walk for three days? Or walk from 8 pm to 8 am around a track? Hear the same bone chilling sad stories about cancer? That's not our style. MelaNoMo'! might be the funnest cancer fundraiser this side of the misipi. It was just a good ole' fashioned fall Saturday. Friends and family came in numbers and brought their appetites, thirst, checkbooks, and most importantly everyone brought a positive ambiance that became contagious throughout the day. Everyone was all smiles and enjoying such a "happy day". The word melanoma is scary and nasty, but now the word MelaNoMo'! Hopefully can bring life and joy and is known for changing the lives in many people that are affected by it. The weather was perfect, johnny's BBQ was excellent, UGA beat Ole Miss, JP Parker Smith Adam Strong & Will Begnaud sounded great on stage, and we even had a Heineken keg. It really all came together in the end to make it the best MelaNoMo'! we have had to date. (going to be hard to top)!!

Can you say, "Thank You"

I can not thank the people that made this years MelaNoMo! Event an absolute success enough. We have surpassed our fundraising goals of $20,000 and are closing in on reaching $30,000!!! This is going to the Melanoma Research Foundation that will use this to fund grants and research trials to help find a cure and create better treatment options, but also they educate and advocate current melanoma patients around the world. THANK YOU FOR HELPING ME!!

 

Accessnorthga.com put together a video the party, check out the link below:

http://vimeo.com/29622445

Also 50/50 is a movie that is coming out this weekend, and I'm pretty sure that it's based on my blog although I'm not getting any royalties. It is a true story of a guy in his mid 20's getting diagnosed with cancer and using humor and a good attitude to get through the difficult times. It's supposed to be the best medicine. Check it out.

Quartely Statements.

The last quarters numbers are in and they are looking pretty good!

 This doesn't refer to the economy nor does it reflect the last 15 minutes of the UGAvBoise game. My CT and MRI took place earlier this week and we like what we see. There is no sign of progression anywhere, and the spots that they believed "might" be cancer are still responding to the medicine and have been shrinking.  Hells yea.

As we were anxiously awaiting the scan results, sitting on the toilet paper wrapped table, I was playing with the ear and eye instruments when the nurse walked in. CAUGHT! She didn't care and nonchalantly said scans look good. Not knowing how to react Marge and I just did a quick high-five, and moved on about what's the next move.  So in 3 months we will have a PET scan in December and are expecting even better numbers in the last quarter to wrap up 2011. I hope that the economy and UGA football can do the same. We are truly thankful for every one's thoughts and prayers and thankful for the results that we are seeing.

I also wanted to thank everyone for the tremendous response we are already getting for MelaNoMo'! which is on 9-24-11. Our goal of raising $20,000 to go towards research grants and patient advocate programs is in reach. Check out www.firstgiving.com/melanomo.

Go Dawgs this weekend, but more importantly GO AMERICA!!

Governor Deal & Gunner Stahl (captain of Iceland hockey Jr. Goodwill Games)

Fá spennt MelaNoMo '! 3 er á einum mánuði frá deginum í dag:

Icelandic for: " Get excited MelaNoMo'! 3 is one month away."

I dropped my american/fijian/icelandic brother Graham off at the airport yesterday so he can begin his next venture obtaining his masters in natural resource management at the University of the Westfjords in Iceland.  Graham was with me at work when I got that startling phone call from my dermatologist over 3 years ago and has been with me ever since through our journey. Although he hasn't lived in the US but 3-4 months in the past two years we can definitely feel his thoughts and prayers with us constantly, and know if I ever feel the need to call him to make fun of my parents or some stupid situation we got put in at the doctor he will be there to crack a joke. His optimism of melanoma and of life in general keeps everyone pushing forward in life. He says that cancer will win once you become stagnant you have to continue to live life and moving forward. I wish you the best of luck bro.







Veremo, Whytaker, and me @ NSB.





Coach Stansson and team Iceland, prepping for the Ducks & MelaNoMo'!

                                        "Fá spennt MelaNoMo '! 3 er á einum mánuði frá deginum í dag"

We are excited about MelaNoMo'! and are already have gotten such a great response. First Freddie Freeman  now the first family of Georgia are reaching out to create awareness about melanoma. The Governor of our great state of Georgia has taken time from his busy schedule to endorse our fundraiser.  These are people that I look up to for not only what they accomplish in the their careers, but also that they know the importance of being proactive about something that your passionate about in order to make a difference. Check out his endorsement letter below. For more information about MelaNoMo'! and how to donate please visit my site, www.firstgiving.com/melanomo.  There is a very powerful video titled, "Dear 16 year old me" on the site. 











Scan-Day

Scan day was Monday, 7-18. CT of neck, chest, abdomen, and pelvis w/ and w/out contrast and MRI of brain w/ and w/out contrast. This stuff is no fun... but we have handled worse. And we had decided to treat ourselves to a fine dining experience the night after our scans. We were definitely feeling anxious pulling up in that awful parking deck at Emory knowing the tests that were ahead of us, but we got through the day because we knew we were going to be treated at Gainesville's newest fine dining establishments later in the evening.

ALAS...

A night of bottomless salad and bread sticks can't cure cancer, but it came close.

7-19-2011 RESULTS: Everything has either gotten smaller or is stable! This is an answered prayer. There are no new spots and the spots that remain are subcutaneous which means no major organs are involved. We walked away feeling good about our results, we even got some lunch beers to celebrate the good news.

Melanoma is different than any other disease or cancer. People do not go into remission of melanoma they just become NED (no evidence of disease). This is something we have come to terms with and we will continue to LIVE, fight, and manage it and strive for NED. We are currently exploring our options for our next vacation/treatment, because you can't have one with out the other. Options: IPI(first FDA approved drug in over 20 years), clinical trail, waiting a month or so and scan again.  We will get another opinion from Moffitt in the days coming and enjoy a few days at the beach.

With that said we are very pleased with the direction we're headed and know that it takes PERSEVERANCE and BALANCE. We have to "keep on keeping on" while maintaining a lifestyle of 26 yr olds.  We have felt the thoughts and prayers from LA to St. Simons and everywhere in between. Even the future of the Bravos:



To Neil
Keep Fighting
Stay Positive
Get Well Soon
Freddie Freeman #5





H-O-M-E

Actual footage of going from our hospital room to our car from Emory University Hospital for the last time!! Enjoy!!
http://www.youtube.com/watch?v=1mBmPb5w7ck

Gonna be a good Year!

After 20 days on 8East, 25 bags of the nasty IL-2, endless side effects, and much time recovering in baths of oatmeal there is a light at the end of the tunnel. It's official I have completed the impossible IL-2 and I'm damn proud!

Even though the clock seems be going backwards we are still counting down the minutes until we are out of here. Things to do to past time, 1. Sleep(I was in so much pain last night asked them to knock me out and they did. Slept from 5 pm to 7 am. 2. Watch movies/tv( our oscar rich library system here we were forced to pick out....Dr Doliitle, Maid in Manhatten, Billy Madison-classic, My BestFreinds Wedding, and the drama Dances With Wolves. And our tv doesn't get sportscenter, but I heard the Mavs won. 3. Walk in circles on our floor pushing my IV pole. 20+ laps equal a mile! Exciting! 4. Eat( no appetite, not happening) 5 read ( no brain, not happening) 6. Internet but looking at facebook creates slight bitterness.

We can bear through this because it's our 4th quarter, finish line is in sight and We are no longer taking IL-2. This week was the toughest yet and although the dr.s prepared us, it hit us hard. After the first bag of IL-2 I hit rock bottom and had they had to skip the next dose until my body fought back and same went for the 3rd and 4th.

So now we wait...tick, tock, tick, tock. We are at the healm of my body and charge nurse. Couple of our other IL-2 inmates will put on their polos tucked in and walk around trying to not to look sick. But they still look like zombies, just dressed better. We just have our bags packed ready for the nod so we don't waste any time in here.

Once we are out of here we do not plan on discussing much about melanoma for a while except for the 3rd annual MelaNoMo'! Tagline"Gonna be a Good Year" on September 24 2011. Website is wwww.firstgiving.com/melanomo( under construction).

Another huge obstacle in life that we got through. Very difficult time testing emotional, physical, and patience limits, but I swear we always got a smile in there somewhere.

I can't say thank you enough for the past 3 months while enduring such a battle, that we came out on top stronger than ever is because of y'all and the big guy.

GONNA BE A GOOD YEAR. 9-24-2011.