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.
Thursday, March 31, 2011
Tuesday, March 29, 2011
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!!!!
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!!!!
Friday, March 25, 2011
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"
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"
Wednesday, March 23, 2011
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!
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!
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