Update of hospital status
I am at home (homebound in hospital bed with home health visits) now and doing somewhat better now that I have 24 hr a day tube feed and am tollerating some soft foods like smoothies, ice cream, yogurt and pudding. Pain and naseua are constant but tolerable. Dr's say I am in remission but wont know for sure until I get another Petscan in a month or so. The worry is very depressing and causes me much anxiety but the medications seem to take the edge off.
Beyond all this I have other health problems poping up and will have to undergo at least 1 and possibly 2 surgeries during these months which will not help my cause very much. just wanted to shoot off an update for those who are keeping score. Keep the well wishes coming, it helps me through a lot more than I sometimes care to admit.
10/14/12 depression is setting in pretty bad hard to keep up with every day bills and all my medical bills on top of that. Now I owe the state and the IRS. I feel like I am drowning and not coming back up. Anti depressants and pain killers + muscle relaxers don't seem to help any more, I am sick of almost choking to death every time I try to eat a little bit of solid food - I mean who chokes on a little bite of hamburger helper for christs sake. I have a dangerous surgery coming up soon they have to remove my chest port that is attatched to a major artery (or vein) that goes directly into my heart and with all the blood thinners im on its gonna be hard to stop the bleeding before I bleed out. Real fun shit to sit around and think about. I miss my friends on twitter but I cant hardly see or be able to read the screen on my phone to tweet. I do not have any "real In Person friends" since I drove truck for 17 years so I sit by myself most of the time staring at the TV like a zombie. There are times I dont want to go on living but I dont want to die either, I love my wife and kids too much to leave them like that. (its just the feeling that wont go away) I have lost 100lbs but it was mostly muscle and I am having a hard time getting around - my legs get to be like rubber bands, I use a wheeled walker and a cane. ive had a power chair on order for months but insurance is holding it up. (I might have to run off into the sunset with one of walmarts power buggies :-) wish me luck anyway even those who dont or cant help financially just a wish of good luck really does mean a lot to me,
11/19/12
surgeries are over for now - chest port is removed as well as my peg tube for feeding. I still cant eat a lot of food types due to the radiation frying my salivary glands. I supplement with Ensure and the like but it is a bit expensive. I have started working with the pain clinic for my cronic pain in my bones, joints and upper and lower back. suprisingly I have not had a headache in months. the most noticeable pain is in my mouth and throat due to the dry/rawness. I carry water everywhere I go as I get too dry and start gagging and dry heaving if I dont sip some every few minutes. It doesnt help at all that most of my meds have drymouth as a side effect. The holidays are coming up and for the first time ever I am not working and cant afford to get gifts for anyone. my kids are all grown and under stand as well as my wife, but its just the point that I was always the breadwinner. I started with a paper route at a very young age and have worked all my life since. I am fast approaching a year of not being able to work and it is very depressing. I do start to see a shrink for my depression the day before Thanksgiving but the meds I am already on dont seem to do much so I dont know what good it will do. Anyway, happy holidays to all of you (I hope all my friends affected by Sandy have a speedy recovery). Peace!
12/01/12
On a bunch of new pills for depression, anxiety and constant pain. I sleep a lot. Finally got a power chair so I can get out of the house once in a while. It's a large wheelchair with a joystick on the right armrest. It gets around very well and it is nice to be able to go shopping with my wife without wearing myself out in a short time. Throat is still dry all the time and its hard to swallow. Often when I swallow a drink it comes straight out of my nose. Driving me crazy thinking I am gonna drown in iced tea one day, but what a tasty way to go :-). SS disability check is helping with bills but I am still in need of donations for prescriptions and Dr copays due at time of visit. This is where even the small donations shine as most of my prescriptions are only $10 and copays are $25. Donation tabs are at the bottom of the HOME page. Hope everyone had a great Thanksgiving - I silently thanked all of you who have helped me through my ordeal both financially and emotionally. Again, I hope all my friends effected by Sandy are well on their way to recovery. Have a Merry Christmas, Happy Hanukkah, or whatever you celebrate. Peace.
Beyond all this I have other health problems poping up and will have to undergo at least 1 and possibly 2 surgeries during these months which will not help my cause very much. just wanted to shoot off an update for those who are keeping score. Keep the well wishes coming, it helps me through a lot more than I sometimes care to admit.
10/14/12 depression is setting in pretty bad hard to keep up with every day bills and all my medical bills on top of that. Now I owe the state and the IRS. I feel like I am drowning and not coming back up. Anti depressants and pain killers + muscle relaxers don't seem to help any more, I am sick of almost choking to death every time I try to eat a little bit of solid food - I mean who chokes on a little bite of hamburger helper for christs sake. I have a dangerous surgery coming up soon they have to remove my chest port that is attatched to a major artery (or vein) that goes directly into my heart and with all the blood thinners im on its gonna be hard to stop the bleeding before I bleed out. Real fun shit to sit around and think about. I miss my friends on twitter but I cant hardly see or be able to read the screen on my phone to tweet. I do not have any "real In Person friends" since I drove truck for 17 years so I sit by myself most of the time staring at the TV like a zombie. There are times I dont want to go on living but I dont want to die either, I love my wife and kids too much to leave them like that. (its just the feeling that wont go away) I have lost 100lbs but it was mostly muscle and I am having a hard time getting around - my legs get to be like rubber bands, I use a wheeled walker and a cane. ive had a power chair on order for months but insurance is holding it up. (I might have to run off into the sunset with one of walmarts power buggies :-) wish me luck anyway even those who dont or cant help financially just a wish of good luck really does mean a lot to me,
11/19/12
surgeries are over for now - chest port is removed as well as my peg tube for feeding. I still cant eat a lot of food types due to the radiation frying my salivary glands. I supplement with Ensure and the like but it is a bit expensive. I have started working with the pain clinic for my cronic pain in my bones, joints and upper and lower back. suprisingly I have not had a headache in months. the most noticeable pain is in my mouth and throat due to the dry/rawness. I carry water everywhere I go as I get too dry and start gagging and dry heaving if I dont sip some every few minutes. It doesnt help at all that most of my meds have drymouth as a side effect. The holidays are coming up and for the first time ever I am not working and cant afford to get gifts for anyone. my kids are all grown and under stand as well as my wife, but its just the point that I was always the breadwinner. I started with a paper route at a very young age and have worked all my life since. I am fast approaching a year of not being able to work and it is very depressing. I do start to see a shrink for my depression the day before Thanksgiving but the meds I am already on dont seem to do much so I dont know what good it will do. Anyway, happy holidays to all of you (I hope all my friends affected by Sandy have a speedy recovery). Peace!
12/01/12
On a bunch of new pills for depression, anxiety and constant pain. I sleep a lot. Finally got a power chair so I can get out of the house once in a while. It's a large wheelchair with a joystick on the right armrest. It gets around very well and it is nice to be able to go shopping with my wife without wearing myself out in a short time. Throat is still dry all the time and its hard to swallow. Often when I swallow a drink it comes straight out of my nose. Driving me crazy thinking I am gonna drown in iced tea one day, but what a tasty way to go :-). SS disability check is helping with bills but I am still in need of donations for prescriptions and Dr copays due at time of visit. This is where even the small donations shine as most of my prescriptions are only $10 and copays are $25. Donation tabs are at the bottom of the HOME page. Hope everyone had a great Thanksgiving - I silently thanked all of you who have helped me through my ordeal both financially and emotionally. Again, I hope all my friends effected by Sandy are well on their way to recovery. Have a Merry Christmas, Happy Hanukkah, or whatever you celebrate. Peace.