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.

Awake My Soul

"How fickle my heart and how woozy my eyes
I struggle to find any truth in your lies
And now my heart stumbles on things I don't know
This weakness I feel I must finally show

Lend me your hand and we'll conquer them all
But lend me your heart and I'll just let you fall
Lend me your eyes I can change what you see
But your soul you must keep, totally free

In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life

Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
Awake my soul, awake my soul
Awake my soul
You were made to meet your maker
You were made to meet your maker"

-Awake My Soul

Mumford and Sons

 

Every time we head down to Emory to begin our IL-2 in the morning leaving Gainesville with our cars packed, coffee and the Mumford and Sons CD Sigh No More. It has been our go to music to get us ready for the week ahead. It is an incredible album that mixes folk, bluegrass, rock with incredilble lyrics themed about life, death, religion, love.  

Timing is everything; we went and saw them live at the Fox Theatre at a sold out show the night before our last treatment. Margaret, me , Steve-O, TB and about 8,000 others got to see an incredible show last night downtown Atlanta.

So here we are back at Emory for our LAST WEEK of treatment! I am getting my first bag in a few hours and again would like to get that lucky 7, but if I don't who cares I will be finished with this nonsense. I will update later in the week and let everyone know how we are holding up. Keep up the prayers.

Mumford and Sons 6-12-11 Fox Theatre

good things are coming...

We started to believe that bad things happen in 3's and after that you will have a long run of good luck and fortune.  To the Gaines family we just can't stay out of the hospital. I got released on May 19 from Emory just a few hours after my dad was admitted to Northeast GA Medical. Turns out mr. active and outdoors (Gary) has a left artery that belongs to Sherman Klump. After chest pain and shortness of breath he went to have tests done and was sent straight to the OR to have emergency triple bypass surgery. He has recovered great and will now outlive us all. Has a great heart, as we all know, and will be back on the river or the trail soon. Friday June 3 my grandmother Ganny had successful surgery to remove part of a cancerous tumor in her lungs. The surgery went great and she is at the Northeast GA Med. and needs everyones thoughts and prayers for her recovery. She is the definition of a sweet southern grandmother. Soon enough she will be back to making her homemade biscuits, slipping her grand kids money, hard candy, and double mint gum. Like I said bad things come in 3's but good things are coming....



Ganny w/ Papa Lou at her 79th Bday fiesta




Gary on annual backpack/fishing trip



I did not get much recovery time and was at work the Monday after treatment and had a busy week at work while the boss was at home recovering. So Margaret and I decided that we could use a vacay for the long memorial day weekend and made a trip down to Amelia Islands and stayed at my aunt n uncles in Fernandina Beach, FL. Reading on the beach and bike riding through town for some seafood and coronas was just what we needed.

This weekend we attended the Hall County Relay for Life. Margaret, Graham, and I along with 16,000 others attended Lanier Motor Speedway. We were a part of "The GI Squad" which was Margaret's team from work. I walked the survivor lap and was joined by my wife and brother for the caregiver lap. Over $350,000 was raised for the American Cancer Society. Hopefully not all of that will go to breast cancer and melanoma can get a little slice of it.

Stay tuned for my next update to come from Emory while receiving my last round of treatment. I report to duty on June 13th and remember the rule of 3's, good things are coming...  

26 going on 96!




I ate 2 dougnuts on my birthday. Haven't since

 

wild man on my bed

So what an exciting week on 8east. We had cards, balloons, signs, and most importantly our dog stoli (wild man).for a birthday blowout.  Margaret's Aunt Jennfier Arnold had brought him up to our room and he was the life of the floor, not saying too much if you see some of these bag-o-bones straggling out of their rooms including myself.

I apprecetiate all of the birthday wishes and I know there are a lot of others places to be or to things to be doing but we are getting cured of cancer which is something not many  people can say they have done. But don't worry Adam hopefully we can go to Six Flags next year.

I finished my 7th bag this morning and this will be our last bag this week. Once again lucky number 7.  It was not an easy week but once again we managed to get through the diaarhea, nauseuesness, lack of showers, and thats just Margarets symptons.

We are still at Emory and waiting while my body gets somewhat back to the norm and hopefully be released sometime tomorrow afternoon. As much as I love the hospital bed and can't wait to get back home.

Only one more round is left!!!! Thanks for the thoughts and prayers, and as Carolina Hernandez says, "congrats Neils body!"

the nurses at 8 East sing Happy Birthday to me... "get out."

DING DING DING Round 3.

 
Monday was my midterm exam, CT of pelvis, abdomen, chest, and neck along with an MRI of the brain. I hate tests and there was no way of cheating on this one, but I got the results from the biggest test of my life on Wednesday and I passed. MRI clear!! CT of chest shows shrinking of tumors!! No new spots!! Amen!! This medicine that I have been cursing while in the hospital is working. I don't like stats because they are usually very skewed, but the percentage of response to IL-2 is 16%. That means if 10 people are recieving this drug only me and some midget out there get the response that you want. (I do pray that I see Mr. White on Monday, we both started IL-2 together, and hope he got good news also). But we are seeing progress and it feels good to catch a break.

So round 3 of 4 is on Monday. Also I will celebrate my 26th birthday on Wednesday in style at the hospital with popsicles and pain pills. Times have changed.

I have to thank everyone for the prayers, inspiration, and motivation this past week the medicine only goes so far we need to give some credit to the Big Guy.
 

May=Melanoma Awareness Month







John McCain

2-time survivor



Eva Cassidy-deceased melanoma



It is officially melanoma awareness month. As you can imagine my family and I are fully aware of melanoma, but the majority of people are not familiar with the most deadly of all skin cancers. Melanoma is one of the fastest growing cancers in the world and every hour someone dies from the disease. It is the most common form of cancer in my generation, people aged 25-29. But if caught early it is very treatable with over a  90% survival rate. It is important to have screenings and know the risk factors involved.

We will be hosting the 3rd annual MelaNoMo'! fundraiser this year sometime in the fall. The goal here is to raise awareness, funding for the Melanoma Research Foundation, and have a hell of a time at our cabin on the Chattahoochee it will include listening to live music while playing cornhole after UGA just wins downing a cold beer with BBQ on the banks of the Chattahoochee on a fall afternoon. If this sounds like something you would be interested in check out www.firstgiving.com/melanomo (this is not an updated site) and stay tuned for more info.

Everything is great on the home front. Looking forward to a weekend with the new nephew in town and will have scans on Monday to determine my life, jk. Thanks for all of the continued support and inspiration. I am definitely not alone on this journey.

 




bob marley deceased
melanoma

 



My fundraiser! www.firstgiving.com/melanomo.



Homeward Bound!

Halftime!!

I'ts technically halftime at this point.  We just finished our second stint at Emory receiving IL-2. Some of you were lucky to see me, but probably regretted it. The medicine hit and it hit us hard.  Like I said day 1 felt like day 3 of the first week during the admin of this medicine, which is cumulative.  My vitals, blood pressure, and all of my blood work stayed with in the guide lines for the Doctor to continue administering it,  so they left us with the answer to the question, "Do you want another round?".  And I believe whether someone needs it or not( most of the time not). The universal answer to the question, "We'll do one more".  The body was still fighting and we even got another round after that of IL-2, to finish again at our lucky number 7 bags of treatment to cure us of Melanoma.

Back to the halftime speech: 

During halftime of a game the coaches will get together take a look at the game plan, stats, videos, and make adjustments given what has happened in the first half to give them the best chance to win the rest of the game.  We are currently at halftime and my Doctors, researchers, nurses,  radiologist will assess many factors to determine what is the best chance to win the second half of the Interleukin-2 battle against melanoma. Most importantly, we will have a scan to determine how the tumors are doing on May 9th and that along with the other factors will determine if we continue on this or go a different route. So lots of prayers and thought those couple of days (even if your celebrating old ass john Greene's bday that night send up a prayer for us).

All of our friends and families have been amazing with all of your continued support, but still ask what can I do to help out? We are working on a project with different quotes, sayings, scriptures, etc.  It can be funny, uplifting, or spiritual that you heard on the radio, tv, book, or just made it up. Send me an email with it gaines.neil@gmail.com.  Thanks again to everyone you DO NOT go unnoticed. I hope that everyone takes advantage of the weekend, enjoys an Easter service, break some bread with the family, or just enjoy watching the Braves or Hawks. 



We get to home to a surprise. Stoli has a summer doo.







If your having a bad day...

Still trekking on...Our goal this week was to reach 5 bags of IL-2 and we just got our 6th at 2 pm and could possibly get a 7th bag tonight. Swollen, lethargic, nauseas, tired, no appetite just name a few side effects, but totally worth it if it works. JK it will work.

Here are some pics of our home away from home, the Emory Manor Hotel(8 east).

My dinner: plain baked potato and water.mmmmm.

Margaret is shampooing my hair with wateless shampoo

Looks like it's working

Day 3 and 6 bags if IL-2. Thumbs up for the support. Swelled up with the Charlie.

Goodnight from 8-east

"Very superstitious, writings on the wall"

It's holy week and that's a great sign as we are here back at hotel Emory for our second round of interleukin-2. we have to be superstitious during our treatment and believe in every little sign of luck. Our waiting room buzzer number was 47 (my old football number). Margaret, "oh look 47 this medicine will work". Or colleen is our nurse that's a sign. Room facing the sunrise that's a sign. Sure we'll take what we can get.

Got 2 bags last night and it put me Out like I was on my 3rd day from the original week. It hits you harder and quicker the second go around I guess your body recognizes it Faster. My blood pressure is lower than normal which has been a cause for concern for the drs and nurses, but they are able to counter with some meds, or maybe someone needs to bring me a Hardees monster burger. So we are aiming for 7 bags this week which was we got the original week but will be okay with 5 (Margarets lucky number).


As superstition will encourage our pysche during this time we know that there is something stronger than luck out there that will guide us toward a healthy long life. It is the holiest week of the year, what are the chances!

Neil-ness (your name with ness on the end)

Over the weekend beer started tasting good again so that is a sign that I am back up to "par" (masters pun). I have had a week free of IL-2 now and I am doing well, this medicine is pretty much flushed out by now. It is the little things that we are enjoying this week, going to work, exercising, walking the dog, enjoying the weather, and talking about the new baby.

We were back at the hospital last week, but being on a labor and delivery floor to see my first niece/nephew be born is a little bit more uplifting than being admitted to a cancer floor. It was a blessing to have our whole family there to welcome Whitaker Neil Friedman into the world. It was such a miraculeous event to experience and we are so happy to be Uncle Neil and Aunt Margaret. Also I was incredibly touched when they announced that his middle name was going to be Neil. I set the bar pretty high, but that boy has some pretty cool parents so I know he will live up to the Neil-ness. I am so happy for Kelley and Courtney and look forward to  hanging out with my new buddy Whit.

I

Lucky number seven

3-31-11

No blog from the past couple of days I have been a little under the weather with the medicine. The doctors and nurses say the worse you feel the better it's working. Well it was on it's A- game and worked pretty damn well. My body threw in the towel due to some low blood pressure and beginning signs of fluid in the lungs. We made it to a final of (lucky number) seven which is great for this treatment. Know one hardly makes it through all 12, our nurses had only one patient and it must have been Chuck Norris.

We had a couple of hospital neighbors that were having the same treatment and one made it to five while the other got seven also. Each time we walked by their room or saw them in the hallway we would all be shaking our heads, and ask "how's it going" like we didn't know the answer, "HORRIBLE", " AWEFUl", "RiGORS and DIAHREA". Then they would respond with "how you holding up" and we just repeat the same thing and add another symptom. "oh yea we got that to". But each time they would always throw out a tip or piece of encouragement with a half smile. We were strangers with different background but this week we were team mates in the battle.

That was until after we had been getting ice-cream. Popsicles, Italian ice out of the communal fridge and realized that they had patients names on them. We laughed pretty hard when we realized it and marge came in and said I got the last two Italian ice. Ate them and looked at box, crap who are The Hooks.

So we will hopefully be leaving tomorrow afternoon to get to our house and our wild man"stoli". We will be recuperating and going back to work for a few days before we come back here for round 2. Our family should be increasing by 2 next week with the addition of my sisters baby and my brothers return from the peace corp. Lots of great things in between hospital visits. Thanks everyone for the support this week with notes,cards, meals, and all of the visitor.

PS: watch out klumps, went from 171 to 190 in 4 days and haven't really eaten at all either.

Eye of the tiger

3-29-11

First I wanted to give a shout out to all of my friends that have been not only supportive but beyond generous. Marge told me that they had a gift for me so I expected cd,DVD, board games. So that's exactly what I got it is just in the form of an iPad. Really can't tell you how much I appreciate it.

Just finished the first night in room 823 and feeling a little hungover. The medicine was toxic but it was the lack of sleep and consatant nurses and techs coming in the room throughout the night that kept me up. My blood pressure is down and it's a combination of the IL-2, but also since my heart is larger than the avg Joe( but most of you knew that already). They will keep a close eye on that and it's expected as a side effect.

Margaret and I know we are in a battle and a friend of ours told us have the mentality like your going into war. So what we do is crank eyes of the tiger fist-bump then blow it up before each dose of meds. Although we just kind of laugh about it.

Also gained 2 pant sizes and 5 lbs in less than one day. Almost back to my college self, fat, lazy, and a little foggy in the head.

Keep everyone updated as the week goes on.

SENT FROM MY IPAD!!!!

Moffitt Trip

3-25-11

Curve ball.

Moffitt did not go the way it was planned, but we have learned that life usally doesn't. You just have to sit on the fastball and adjust to the curve ball. 9th grade baseball advice, thanks CT.

Recap of the last couple of days :Good news MRI was clear and I do have a brain. Not so good the cat scan showed a couple more spots that are nearly microscopic but they are melanoma. So instead of surgery and harvesting the cells for the "Til" , which could take 6-8 weeks we are going to start with the IL-2 as soon as possible. We opted out of surgery and got out of there pretty quick, hoped a plane and got back to gainesville about midnight last night. We are excited to be back home (we just bought our first house on Monday so in between all of this we are trying to get moved in) and begin treatment at Emory and be closer to friends and family.

We have faith in our treatment plans and do not pay attention to the numbers, stats, survival rates, because they are usually a load of crap. It is said best in Anchorman:
"They've done studies you know, 60% of the time it works everytime"
"That doesn't make any sense"

Intro.

3-23-2011

There are many bloggers out there with new wacky recipes, funny stories from work/school, travel excursions, home repairs, etc. Very  light hearted feel good stuff, or why would you publish them to the public. So that is what I am attempting here, but my subject lies more along the lines of cancer. It's not as light-hearted, but it is what it is and we deal with a positive state of mind. Fact: cancer blows, but to get me through the Dr visits, surgeries, scans,treatments, etc. is to just make light of it. It is so damn dark and depressing that we refuse to get wrapped in it and let it control our lives. So if Margaret and I have to make fun of the old guy farting next to me in the waiting room, laugh out loud at the string quartet that are currently playing like the titanic is going down, or just gossip about other peoples timeline, to make me feel better about myself so be it. I am 25 years old and don't belong here, but while I am, I will do the same thing I expect any of my family or friends to do and laugh about it.

Also the main goal on this blog we be a way that I can keep everyone updated on what new has been going on with me in my fight against Melanoma.

bio:I am Neil Gaines married to the WONDERFUL Margaret Gaines R.N. we have a golden retriever Stoli, currently working at the family biz North Georgia Label and have been battling melanoma on and off again since May 2008. 
medical hx and current status:  Diagnosed with stage 3a melanoma in 2008, had 3 surgeries and a year of interferon and finished August 2009. I decided to go ahead and get married while I was cancer free in March. November 10-reoccurence-surgery. Febraury 11-reoccurence-more surgery. March 11-1 week of radiation then reoccurence on my chest to bump me up to stage 4.
Stage 4 finally!