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Rembering Reg, Scott, Lois Remembering Reg, Scott, and Lois. Courage Does Not Always Roar; A Testament To The Human Spirit, and never forgetting those taken from us too soon.

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Old 10-06-2009, 10:08 PM   #1
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The Life Diary Of Scott (NYSR)

A lot of you might know, a lot of you might not, but I have cancer for the 2nd time and am going through chemotherapy and radiation. I'll post any more details if anyone wants them, I have no problem with that.

But last Monday, I had a pretty surprising visit to the hospital and I've been here since. I'll still probably be here until next Sunday or Monday or somewhere around there, that's just a guess. So I know I havn't logged on in over a week, but don't think I left the site, I'll be back


Ok well here's most of the story:

About 2 years ago I had a tumor, had 4 sonograms and they said it was fluid filled and put me on antibiotics to get rid of it. It was about halfway through the basketball season and I finished out the season with that tumor in the muscle tissue of the groin in my leg. Basically it wasn't shrinking or going away so we kept going back and they would just put me on new pills, but it got big as shit towards the end. It was like a golf ball size, so then we sent the sonograms to another place and they knew right away that it was a tumor and had a biopsy scheduled. After the biopsy the thing went crazy with internal bleeding and all that and ended up bursting through the stitches, so obviously I went in the hospital. They found out it was cancer, and did surgery on it right away. The thing is that by the time they found out it already spread to lymph nodes (They basically connect areas and transfer blood places in your body, there's some in your stomach, neck, legs, etc) in my stomach cause those are the ones that go to your groin, hamstring, etc. So they did surgery, had clean margins actually at the site, but couldn't get it all on the lymph nodes. They basically split my stomach open from the bottom of my ribs straight down, had like 28 staples and 50-something dissolvable stitches.

So because they waited so long to diagnose it and because they misread the scans 4 times, it spread and I needed chemo. If it stayed at the original site, they got it all and had clean margins so I wouldn't have needed chemo. But I was still low risk, so I was on a light-ish chemo schedule. For 2 weeks I would get a light chemo, then the 3rd week they'd hit me pretty hard and I'd get really sick for about a week where I couldn't even get up, couldn't eat, or anything like that for a week. And I'd usually lose about 5-10 pounds a week with the heavy dose.

Did that for 6 months, and the last month and a half they did radiation also. After that all was over everything was gone and I could go back to school and all of that again. I lost all my muscle and stuff, and it took about 2 months for me to even be able to jog again, but after around the 6th month I got most of it back and was playing basketball and football again. Wasn't nearly as strong as I was still, but I figured I had a good 6 months to get back in shape before the next basketball season.

That's when it came back again in my lungs. The 6th month check up PET scan showed something light up in my lungs, they did a biopsy and gave me 4 more cuts in my side and it turned out to be cancer again. So apparently 1 little cancerous micro-cell got loose and started multiplying again. Sucks that 1 cell can do that, but they gotta kill everything. So back in the hospital, and more chemo and radiation. Both times it happened right when March Madness started, I remember watching the last 2 years of it from the hospital, so not a lucky time of year for me lol.

This time, chemo was 10000000x worse. The 1st chemo was just terrible. Getting the chemo is every day for 5 days in the hospital, where as last time I never stayed over night in a hospital once other than surgery. Then I'd get out of the hospital, get about 2-3 days at home, and I'd go right back in the hospital for another week. This chemo literally kills every single blood cell in my body, so I have absolutely nothing to fight any bacteria at all. And everyone's body has bacteria in it naturally, so I would start to get fevers from having no white blood cells to fight it and have to go right back in the hospital.

So I did 4 rounds of that chemo, each time my stay in the hospital after it was getting longer and the stuff I was getting was getting worse. The 1st and 2nd times I just got fevers and all my blood cultures were negative, meaning it wasn't anything causing it. The 3rd time was really bad, I went to sleep and woke up at like 3:30 in the morning randomly to go to the bathroom. I had a fever so we went in the hospital. When I got there I had to go to intensive care and they said I was literally an hour away from dying. That kinda scared me because I was sleeping and if I didn't wake up I could've died sleeping. But they gave me all these antibiotics and it got a lot better. Turns out I had Ecoli that caused it.

The 4th time was the worse hospital stay. It lasted about 2 weeks. I had a fungal infection then, and I'm still taking pills for that to go away. But in the hospital I had fevers up to like 105.5 with that, so it wasn't good. But my blood counts came up and the fevers and everything stopped. Usually I'm in the hospital until my blood counts come up, right when they come up everything goes away.

So I had 4 rounds of that, and then they start 28 days radiation. I got chemo while I was getting radiation because it was supposedly a much lighter dose of a different kind of chemo that I wouldn't react to nearly as much. It was every day for 2 weeks though which was pretty annoying to have to drive in and get it every day. That was going fine, I got through a week and a half of radiation and then out of nowhere I just got really sick while I was at the docs office for a checkup on how things were going. I actually needed an ambulance to get me to the hospital because they were scared of the bacteria in the air of the car or something like that, I don't really know I was kinda out of it when they explained. But that was my most recent stay in the hospital. My counts went to 0 again and I got fevers again. This time nothing really caused it again but it took foreverrrrr for my blood counts to come up and get out of there. I was there for about 3 weeks this time, the longest of my hospital stays by far this time. They stopped radiation while I was there.

So I got out about 2 days ago, felt like crap until today I'm a lot better. They're gonna start radiation again this Monday, but they're not going to do chemo. They didn't think I was going to react to it as strong as I did, so they're going to finish radiation now before I get another dose of chemo. Radiation isn't bad at all, so it should be a nice month and a week break, which would be the longest break I've had.

This time around the chemo I'm on didn't make me lose as much muscle and when my counts are up I can still sort of jog and at least throw the football around and shoot around in basketball. The new nausea medicines they have now are unbelievable. Like I can actually eat through chemo this time around (except for the fever hospital stays, I can't eat at all with them) but I've barely been really sick and had to stay up all night being sick like last time around. It's amazing even in a 6 month span they've come out with so many new meds that really work so much better. I still lost a ton of weight though, which I really need to get back. When I 1st got cancer I was 135, after treatment I was 120, during the 6 months off I got back up to 140, and now I'm down to like 110-115, so not good at all. I've lost a lot of weight this time around, that's gonna be awhile to build back up.

They said a pill's in works and it works on all the rat testing, but it just needs to get FDA approved. It's a pill that you take instead of chemo and you just take it once a day for 6 months and you'll have absolutely no side effects or anything. Because the pill just targets cancer-active cells and doesn't just kill every cell, good or bad, like chemo does. They said it should be out in about 5 years and will be standardized throughout the US in 7-10 years. So if you ever get cancer in the future, it won't be bad at all.

Basically my plan for the rest of the way is to have 1-2 rounds more of the 1st type of chemo after I finish radiation. That should take me to around the time of the Super Bowl that I'll be done with everything and able to go back to school. Hopefully I'll be done around winter break time and I'll get to have the 2nd semester of my senior year. That's the plan at least, but things never go according to plan with this stuff.

It really sucks missing a big chunk of my sophomore, junior, and senior years of high school. And I havn't been able to play basketball since I was a sophomore. I probably miss that the most, I loved HS basketball and I was just starting to get a lot of playing time. My whole freshman year I hated playing cause I only played like 2 mins a game, but then by the end of my sophomore season I got a lot better and ended up starting and having my best games of the year at the end of the year. The last game of the year I was 6-6 from 3 and had 24 points and 8 assists which were both the most I've ever had in High School. So I was reallyyyy looking forward to my junior and senior seasons playing, that's one thing I think about a lot and it kinda gets at me that I didn't have a chance to play again.

So yeah, basically I started ranting in there and just typing whatever I was thinking, so it's probably pretty random lol. But that's basically the story.

Oh yeah, other random things I forgot:

The most recent scans showed that all the cancer is gone (That was after the 4th round of chemo) so there's nothing there again. They're just adding more to make sure that if 1 cell got loose, it'll be killed. Basically like stomping on it after it's dead.

Also the type of cancer is called Rhabdomyosarcoma:

And I've had no family history of anyone having cancer, I'm just the lucky one in my family to get everything. I got Celiac disease too where I can't eat anything with wheat, flour, oats, rye, barley, etc. But that's getting better with more stuff coming out. It used to be that I could eat basically nothing, but now there's a few restaurants and foods that just got wheat-free stuff so it's not as bad anymore. It's getting a ton more awareness for it since so many people have it. (About 1 in 120 people have it, but only 1 in 8 of those people know they have it, so about 1 in 900 people have it and know they have it, which turns out to be a whole lot more than you'd think. Basically about 90% of people with type 1 diabetes had Celiac too that wasn't treated so it turned into type 1 diabetes) So a lot of places are getting foods for it.

And that's pretty much my whole story lol. Sorry for it being pretty long, I pretty much just lost track of everything and ranted a lot haha

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Old 10-07-2009, 12:00 AM   #2
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I don't know you, but I wish you the best with your treatment.
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Old 10-07-2009, 12:52 AM   #3
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Yo bro...My thoughts and prayers are with you. My mom beat cancer...twice. So will you!

If you ever need an ear to bend or a cyber-shoulder to lean on, just lemme know. I'm sure there are many others here who feel the same way. SJ is a family and we're here for you.
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Old 10-07-2009, 12:55 AM   #4
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Thoughts and Prayers are with you NYSPORTSRULE! Let us know what we can do.. and u know we'll do it. take care and god bless
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Old 10-07-2009, 08:58 AM   #5
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As Rondo said, hope that ur treatments can turn the tide for u, and put it in remission. I had a rough summer with several deaths and I find that SJ as a family can take ur mind off the tough situations and bring some smiles. Hope it does the same for U. Good luck in the fight and dont give up.
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Old 10-07-2009, 10:22 AM   #6
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Unfortunately my uncle couldn't beat throat cancer the 3rd time around, but thankfully my grandfather's prospects are looking much better with his ailment.

I know you're an awesome guy just from talking to you for one day. Stay strong my friend. I know you'll pull through fine.

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Old 10-07-2009, 10:57 AM   #7
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I knew your story but what these guys don't know is you are 18 years old. And carry yourself with more dignity, poise than most adults. I also know TJ worked really hard along with Jeff and Mike to get you as close to the Jets as possible.....a lot of people love you

We are a family and we are all praying for you

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Old 10-07-2009, 02:39 PM   #8
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I've already said this many times, but I really hope you get better. I could never keep strong if something like this ever happened to me.
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