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Edited by Fallen003: 6/5/2016 11:25:29 PM
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Fallen003

A thank you to Bungie, from a guy with a brain tumor (Update 6/26/15) Good and bad news

June 5, 2016 update Holy crap guys, it's been a year since my last update? Man time has flown. So I'm popping in by request to give an update. It's been an interesting year to say the least. Good news first: My latest visit with the specialists was three weeks ago give or take. The tumor is stable and shrinking, down to ~5mm or so in size. Doc thinks 2-2.5 years more of medication and it'll be gone. Since it is stable, they are looking at other issues that are wrong with me. I should also (hopefully) have my disability approved by the end of the month. I am also 100% off insulin now. So my body is slowly healing. Bad news that isn't too horrible: Let's see... The missus and I separated last August. Thankfully it was an amicable thing. I tried to go back to work, but crashed and burned horribly, only being able to work 2-3 days a week isn't a good thing at a full time job. It was worth a shot though. I was diagnosed with AGHD, as my body apparently isn't making growth hormone. Like none. So I started shots for that on Friday night. Doc thinks that in a year or less, the shots should really start fixing a lot of my other issues with memory, focus, etc. It'll be nice to be able to explain stuff without losing my train of thought. I've spent about an hour typing this so far. The nerve damage doesn't look like nerve damage. I have a MRI on Monday to look at my C Spine, as the neuro guys think one of my many back injuries might have crushed some nerve fibers. Still, at least we know the nerves are functioning, just the pain signals aren't getting where they need to go. All in all though, that's not what I'd call "bad" news. I'm finally getting a lot of the answers I've needed for the last few years. It's only taking 3000 mile round trips to Seattle to get them (I'm in interior Alaska) but it's worth it. So the current med tally has gone down, but what is left is more specialized stuff. -Cabergoline 0.5mg twice a week -Testosterone Cypionate 80mg a week IM shot -Novotropin (HGH) 0.2ml shot daily -Metformin XR 500mg daily Thanks again for all the 'get wells' and wishes everyone. Honestly I'd forgotten about this until I got a message on xbox live the other day. Hope to catch you guys around and probably get shot in the face since I suck at PVP :D ------------------------------------------------------------------------------------------------------------------------------------------------------------------ Edit: Moved from #Destiny to #Bungie for a better fit. First off, it isn't cancer thankfully. Downside is that I have a lifetime of medication that I can never go off of. This is where Bungie and the Destiny Beta comes in. Truthfully, I doubt out of all the forum posts and emails that they'd ever read this, but I'm telling my story anyhow. I had my final exam for disability due to my tumor on the 22nd. To say I was a mess before going into the psychological exams would be putting it lightly. I haven't slept more than 4 hours a night since I lost my job back in February from being unable to work. When I got out of my four hour appointment, I had an email. Not just any email, but one containing the beta download codes for Xbox. The moment I got home with my wife, Destiny was downloading, and we spent the entire beta test ignoring my problems for a few days. It was nice to feel normal, even for a few days. Nice to forget all the crap that is going on in my life and let it all fade away into having fun playing xbox with the wife again. Nice to remember what life was like 10 years ago playing Halo when we were dating and life was a lot simpler. It was nice to know that even though I'm going through hell right now, that there was still some kind of hope. I got a letter in the mail this past Saturday saying that (even with the tumor messing up most of my function) that I should be able to work in some capacity to the point my disability was denied. Truthfully, I have no idea if we will be homeless or not when the full version of Destiny comes out, but that isn't the point to all this. My point is simple really. Thank you Bungie for putting something out that even in an incomplete state, it could help me forget the daily migraines, medication injections, and general hell that my life has been for the last eight months. That is something truly impressive to experience. Thank you Bungie for continuing to put out great content, and even if I end up unable to play the full version of Destiny, I wish you the best on the launch. Your staff deserves a round of applause for the great game they have created. In regards to the comments, details for my condition are in a comment further down the page. Thank you all for the well wishing. Normally, I'd go comment by comment and say thank you, but it is looking like I'd have a ton of them to go through. Thanks guys, and with a little luck you'll get to shoot me in the face in Destiny sometime lol.
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  • Amen, brother. Hope everything works out in your favor.
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    • Edited by Fallen003: 8/8/2014 5:55:35 AM
      For those who want to know the details, what I have is called a Prolactinoma. It is a benign tumor that forms on the pituitary gland. In my case, it formed right between the optic nerves so my vision is iffy some days, light sensitivity, balance isn't so good either. The joyful part is that it caused my body to stop producing the markers that tell my body to make testosterone and insulin. So pretty well overnight, I went from being healthy to being an insulin dependent diabetic and having to (intramuscularly aka big ass needle) inject testosterone and insulin to stay alive. For the tumor, I am on a medication called Cabergoline that is supposed to keep it from growing any larger. Downside is that without insurance, these medications cost over $1000 a month. So it kind of boiled down to the point that I'm having to look for a job that I can do from home/doesn't require me to move around much. It is going to be interesting but I don't have much of a choice. -65f winters in interior Alaska (yes it gets that cold every year. I've seen colder a few times) don't really work well for the homeless bit. Both the missus and I are job hunting, but I at least wanted to get this posted in case we can't pay internet or something soon.
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      • 1
        Princess
        Princess

        It might be poisoned... - 7/28/2016 3:56:58 AM

        Good luck with everything
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      • Dang man, that's rough. You sir, are a fighter. Don't give that fight up, no matter how hopeless it seems. I'll pray for you my friend, trust me when I say "You'll be alright". Because you will. You've gotten this far, and you won't be stopped now. Blessings!
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        • Edited by Forum Shark: 8/8/2014 5:58:36 AM
          Feels for days, man. That's some bull that you didn't qualify for disability benefits. At least you've got your wife to help be there for you. I hope your can find somewhere to stay if it comes to that. Best of luck to you.
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        • God bless you man! Praying for a miracle...
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        • Hopefully we will see you on the battlefield. Good luck out there.
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        • God bless
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        • Social security disability always denies everyone the first and second time. Get a lawyer and let him keep trying. Eventually you'll get it. If you need any advice, reply to this and I'll shoot you my email. Good luck.
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          3 Replies
          • Edited by The Purple Ball: 8/8/2014 6:16:01 AM
            I will always be with you my child!
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            • I hope things get better mate . Not fully understanding your situation. All i can offer is my hope thats things get better for you
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            • Here's hoping and praying for you. Best wishes my Bungie brother.
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            • Good luck fellow Guardian. We all have our battles in life, but you are waging a war right now. I hope it with each day your situation gets better. Keep us posted.
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            • Wow man I feel bad, good luck and remember never give up!
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            • You will be alright m8 just keep your chin up, Destiny will be out soon.
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            • my best wishes guardian
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            • 1
              SquattingTurtle
              SquattingTurtle

              Praise the Sun - old

              Good luck to you.
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            • Good luck bro! Hang in there
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              • Bless you good sir. You are legend. See you star side!
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              • [quote]First off, it isn't cancer thankfully. Downside is that I have a lifetime of medication that I can never go off of. This is where Bungie and the Destiny Beta comes in. I had my final exam for disability due to my tumor on the 22nd. To say I was a mess before going into the psychological exams would be putting it lightly. I haven't slept more than 4 hours a night since I lost my job back in February from being unable to work. When I got out of my four hour appointment, I had an email. Not just any email, but one containing the beta download codes for Xbox. The moment I got home with my wife, Destiny was downloading, and we spent the entire beta test ignoring my problems for a few days. It was nice to feel normal, even for a few days. I got a letter in the mail this past Saturday saying that (even with the tumor messing up most of my function) that I should be able to work in some capacity to the point my disability was denied. Truthfully, I have no idea if we will be homeless or not when the full version of Destiny comes out, but that isn't the point to all this. My point is simple really. Thank you Bungie for putting something out that even in an incomplete state, it could help me forget the daily migraines, medication injections, and general hell that my life has been for the last eight months. That is something truly impressive to experience. Thank you Bungie for continuing to put out great content, and even if I end up unable to play the full version of Destiny, I wish you the best on the launch. Your staff deserves a round of applause for the great game they have created. In regards to the comments, details for my condition are in a comment further down the page. Thank you all for the well wishing. Normally, I'd go comment by comment and say thank you, but it is looking like I'd have a ton of them to go through. Thanks guys, and with a little luck you'll get to shoot me in the face in Destiny sometime lol.[/quote] Smoke weed bruh
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                11 Replies
                • I wish you good luck and hope you don't end up becoming homeless.
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                • God bless you
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                • You, good sir, are such an inspiration for everyone who goes through tough trials and tribulations. May God give you the strength, the courage, and the peace of mind to go through every day with a smile on your face.
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                  1 Reply
                  • Your in some need for weed try some rso it has cancer curing property maybe it would help you
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                    • namaste
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                    • You've already come back from the dead once guardian. You have what it takes to push on. Best wishes
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