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.

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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"