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