To all of you who read this blog on a daily (well as often as I get it done anyway) basis, and to those of you who only read it occasionally, Merry Christmas, and a prosperous and Happy New Year. I, for one, am already having a Merry Christmas. One of my friends text me at just after 0300 this morning to wish my family and me a Merry Christmas. I was awake, I'd had a bit of a time around 0215, and was waiting to make certain it had all calmed down and I'd had a chance to make certain I'd all calmed down before taking the first of the daily drugs and first feed of the day. This time of the morning, when I'm awake, is the time I can see my wife off to work. To have that minute or two we can have as our own for the day. I love the feel of her hair, the way she smells, how she hugs me. We can't talk much, or we'll wake the oldest and my grandson, but we can give a hug and I get a pec on the cheek. My mouth is so messed up it wiped out my chance to give her a kiss. It's one of the plethora of things I've given up over the last year. To not be able to give her a kiss, and to only be able to share a bed with her for more than a couple of months in the past year, those two are the most egregious losses I've suffered.
But, it Christmas, it only comes once a year, except for me. I've always kind of thought every day was a gift, so Christmas is every day for me, on the gift side of the table at least. I said yesterday that I'd had some difficulty with the entire Holiday season. I didn't lie, and I won't go any further on the subject than this: Don't let events dictate how you feel about any particular time, ever. Events happen regardless of the time of year, your time of life, or time of the day for that matter. Good and bad things happen to people on a daily basis. It's no reason to condemn a Holiday, or even the Ides of March, (unless you're Julius Caesar, and you were warned buddy) for what happens to you personally. There, 'nough, said. This time of year should be, even if you're not a believer or are of a different religion, a time to at least look forward with your family. To see the potential that each one of us has, and to nurture that beginning with today. To believers, this is the celebration of the birth of the Savior, Jesus Christ. He lived his life, and sacrificed it to take away sin and be the one way to God. That's a pretty heady task in itself. He lived a very good philosophy, even if you're not a believer, or Christian. Love each other, don't hate, give thanks. Those are good things to achieve, regardless of what a person believes.
This year for me is a bit different than all the Fifty Three I've celebrated before this one. There's a high probability this will be my last. I was hoping for thirty to fifty more to celebrate before I hit that last one, but this is what I got dealt, so I'll play it. Truthfully, I'm more at peace with myself, even though my temper is still pretty close to the surface, and I'm not very patient with some people, overall I'm definitely more relaxed and at peace. I imagine that's pretty common for us terminally ill. We aren't in a bind to find some way to stay alive. Personally I don't want to try anything that's going to make me sick, and in the end only give me a couple more weeks or months at best. I'm more at peace with myself because as I watch my family, I'm not as worried as I was about their being able to take care of themselves after I'm gone. I don't just mean monetarily, I mean as a family unit. I see in them a lot of strength. It's different types of strength in each of them, but together they are going to make a fabulously strong family. I knew they were strong prior to my getting the Terminal Velocity prognosis, but I was worried they might fragment off and not pool all their strengths together. I see that was an underestimation on my part. They are stronger already, and will continue to grow that way. I'm very proud of them all.
I'm more relaxed, probably because I am not worried about what's coming. I know how this ends, and the only thing I have to worry about is doing that part with a little dignity and some grace. I hope I can achieve both of those things. It seems to me we have so few choices that are left to us, without some kind of damn government rule, dictating the direction we should go, that dying is the one thing I hope they leave the hell alone. I've never been much on suicide, since most often it's done it robs the family of reason, and leaves them with questions and guilt. In painful terminal illness like ALS, I'm not so certain that should be a problem, though. I'm more relaxed and at peace because I've got a supportive family. I know it hurts them to see me down and sliding a bit farther down all the time. It would me, I know, and my family is filled with better people than I am. I'm more relaxed and at peace with myself because I've got a ton of supportive friends. They humble me by telling me I inspire them. They strengthen me by being friends, and when I'm gone I won't worry about my family, because they will be there for them as well.
Lets wrap this little Christmas Soiree up so we can enjoy our families and make a memory with them, what do ya say?
The two gifts that I got this year are the same ones I get every year, and I don't thank enough for them
My family: The Best Gift I've ever gotten. From my family in Kansas, to my here in Texas, headed up by the lovely and courageous Liz, to my Aunts and Uncles and Cousins. Thank you for being a big part of my life, as well as letting me share mine with all of you
My Friends: I've got way more than I ever thought I had, and that's a wonderful feeling. I've got a core group of friends I've had for over Thirty years. You guys know who you are, you're more like family, so I probably should have counted you in with my family. I've gained a lot of friends over the years, and gotten reacquainted with others in the last five years. I count myself damn lucky, believe me, to have so many support me in this long run "home". You're a blessing, each and every one of you. and you'll always hold a special place in my heart
That's it. The only two gifts that I think count. At least for me. The other things I've gotten over the years have been wonderful, I've loved them all in their own way. Family and Friends though, those are the two gifts that simply can't be replaced.
Merry Christmas to all of you!!! Thank you so much for your support, it's wonderful
Wednesday, December 25, 2013
Tuesday, December 24, 2013
So, Damn The Bad Luck
I've gotten a few notes asking if everything is okay, since I've not hit the blog or Facebook in a couple of days or more. No, actually, all is not okay. Friday, things were cooking along just like I would have wanted them to do so, simply because it's a Friday, and I felt damn good. Saturday, The Boy and I made Soft Molasses Cookies. I screwed up the first batch, so I let The Boy do most of the work on the second batch and he did a fabulous job. He pays more attention to the directions than I do, and the results proved that out. But, I'm tired all day Saturday. I slept more than I was awake. I just didn't feel right, and come Sunday the explanation would pop up.
I woke up at the normal time on Sunday, couldn't stay awake much more than to put my meds in and feed, and I was back out. I was like that all day. Then around five pm or so, my neck suddenly swelled up so much that I thought the skin was going to rip. We tried several things. Cool compresses, warm compresses, leaving it alone, rubbing it down, nothing seemed to help. About nine pm I had Sarah call hospice and got the on call nurse out. She seemed as confused as we were, and asked if I was comfortable with waiting until Monday to get it really checked out. Well, yes, I suppose I am. Like there was any choice?
Monday, I went to lymphedema therapy. The neck is terribly swollen, hot to the touch, causing me some pain, and messing with my breathing. We don't do much, if it's an infection there's no use in driving it out of my neck to all over my body. So I come home with some of the muscle pain eased off, but the swelling isn't much better. In fact, when the Hospice nurse shows up, the swelling is so bad that my skin is starting to weep a bit. Nasty shit there. I also get an O2 machine and bottle, for those days when I feel like I'm having trouble getting enough air and I'm struggling with keeping my pulse rate down. So now I really do feel like a hamstrung old cancer patients. Somewhere around 11:30 and Midnight Monday, I get this icky feeling and something really foul smelling wakes me up. The spot that the skin on my neck that was weeping, finally did pop, and it's running a gusher of bloody, infection laden, stinking fluid. I don't want to wake anyone up, so I work on taking care of it myself. I did a pretty decent job, too, if I do say so myself. Taking a shower and trying not to get anything in that spot was a real pain, but that's finished and over with. So now it's a matter of keeping a clean something over the spot so it drains into a rag and not all over me. I'm going to have to have some help with this as the day goes on. It's a good thing I've got four or five boxes of gloves for just such an occasion.
Christmas is almost here, and for the first time in a long time I was really looking forward to having a nice Christmas day. We have a six year old boy in the house for goodness sake! It had better be a fun day. Christmas and the rest of the holidays and I have been at odds with each other for quite some time. A lot of the bad crap that's come my way has come during the time between Thanksgiving and the New Year. So when it came down to it, even when things were going just fine, I was a regular Scrooge. I shouldn't have been, the bad stuff was just a turn of the cards. It had nothing at all to do with the season or time of year other than that's just how things shook out. I realize now, that I'd just taken the easy way by being angry with Christmas. Foolish really, but that's how I looked at it.
So, here I am, about to celebrate what more than likely will be my last Christmas, and I'm excited to see the day come. How's that for sudden turn around? Well, it struck me at Thanksgiving, that I had put the bad shit ahead of having a good time and enjoying myself. I will be enjoying myself just because I can and should. I don't have to worry about something bad happening to ruin it, even this stinking, draining, infection in my neck won't keep my from having a good time. Turns out I've known all along what it was supposed to mean to celebrate Christmas. I'm glad to be back to that reason. It only took being terminal to get back to it. Looks like I piddled away a lot of good times. During the first twenty-three years I worked for a big oil company, I spent more holidays at work than I did at home. Not a bad gig, really. Double time and a half pay. Leave real early, Check everything twice, be home before too late in the day. Generally if I got out early enough, noon. If not, then two or three in the afternoon. There were a few times I was on call, I think in reality I only got called out twice on any given holiday, and once was the fault of a guy that just couldn't leave well enough alone, except when he was on call. We had a talk about that. I made him stay and help clean up his mess. I sent him in about 10 PM, I got to leave about 11.
So yeah, this Christmas may be my last, but I intend for it to be one of my best. My oldest son and his family will be here the 27-31. That should make for some nice visiting. It will be good for me to have everyone in one spot, so I can watch how they get along. They are going to need each other, and Liz is really going to need them, in the not too distant future, I fear.
Love all of you. Keep the Faith
I woke up at the normal time on Sunday, couldn't stay awake much more than to put my meds in and feed, and I was back out. I was like that all day. Then around five pm or so, my neck suddenly swelled up so much that I thought the skin was going to rip. We tried several things. Cool compresses, warm compresses, leaving it alone, rubbing it down, nothing seemed to help. About nine pm I had Sarah call hospice and got the on call nurse out. She seemed as confused as we were, and asked if I was comfortable with waiting until Monday to get it really checked out. Well, yes, I suppose I am. Like there was any choice?
Monday, I went to lymphedema therapy. The neck is terribly swollen, hot to the touch, causing me some pain, and messing with my breathing. We don't do much, if it's an infection there's no use in driving it out of my neck to all over my body. So I come home with some of the muscle pain eased off, but the swelling isn't much better. In fact, when the Hospice nurse shows up, the swelling is so bad that my skin is starting to weep a bit. Nasty shit there. I also get an O2 machine and bottle, for those days when I feel like I'm having trouble getting enough air and I'm struggling with keeping my pulse rate down. So now I really do feel like a hamstrung old cancer patients. Somewhere around 11:30 and Midnight Monday, I get this icky feeling and something really foul smelling wakes me up. The spot that the skin on my neck that was weeping, finally did pop, and it's running a gusher of bloody, infection laden, stinking fluid. I don't want to wake anyone up, so I work on taking care of it myself. I did a pretty decent job, too, if I do say so myself. Taking a shower and trying not to get anything in that spot was a real pain, but that's finished and over with. So now it's a matter of keeping a clean something over the spot so it drains into a rag and not all over me. I'm going to have to have some help with this as the day goes on. It's a good thing I've got four or five boxes of gloves for just such an occasion.
Christmas is almost here, and for the first time in a long time I was really looking forward to having a nice Christmas day. We have a six year old boy in the house for goodness sake! It had better be a fun day. Christmas and the rest of the holidays and I have been at odds with each other for quite some time. A lot of the bad crap that's come my way has come during the time between Thanksgiving and the New Year. So when it came down to it, even when things were going just fine, I was a regular Scrooge. I shouldn't have been, the bad stuff was just a turn of the cards. It had nothing at all to do with the season or time of year other than that's just how things shook out. I realize now, that I'd just taken the easy way by being angry with Christmas. Foolish really, but that's how I looked at it.
So, here I am, about to celebrate what more than likely will be my last Christmas, and I'm excited to see the day come. How's that for sudden turn around? Well, it struck me at Thanksgiving, that I had put the bad shit ahead of having a good time and enjoying myself. I will be enjoying myself just because I can and should. I don't have to worry about something bad happening to ruin it, even this stinking, draining, infection in my neck won't keep my from having a good time. Turns out I've known all along what it was supposed to mean to celebrate Christmas. I'm glad to be back to that reason. It only took being terminal to get back to it. Looks like I piddled away a lot of good times. During the first twenty-three years I worked for a big oil company, I spent more holidays at work than I did at home. Not a bad gig, really. Double time and a half pay. Leave real early, Check everything twice, be home before too late in the day. Generally if I got out early enough, noon. If not, then two or three in the afternoon. There were a few times I was on call, I think in reality I only got called out twice on any given holiday, and once was the fault of a guy that just couldn't leave well enough alone, except when he was on call. We had a talk about that. I made him stay and help clean up his mess. I sent him in about 10 PM, I got to leave about 11.
So yeah, this Christmas may be my last, but I intend for it to be one of my best. My oldest son and his family will be here the 27-31. That should make for some nice visiting. It will be good for me to have everyone in one spot, so I can watch how they get along. They are going to need each other, and Liz is really going to need them, in the not too distant future, I fear.
Love all of you. Keep the Faith
Sunday, December 22, 2013
I Skipped A Day, Because I Slept
Yes, it's true, I skipped yesterday because I slept most of the day. I don't know why. I wasn't in any extra pain. I wasn't sick, didn't run a fever. I don't know why I was so sleepy. I did, however, wake up bleeding like a leaking faucet. Not just a little, but fairly copious amounts. Less than a gallon, more that a cup. I know that''s a wide amount, but it's about truthfully what I leaked out of me too. Friday was all about pain control. All day long. I got that under control and then it became bleeding control. I am not sure what I can do about the bleeding to control it. I put in some extra, cold liquid. Twenty ounces of lemonade, twice, that seemed to help. Much better than trying to get a hot cup of coffee in me, and I can set with the lemonade dripping out of a bag. Takes a bit, but it is still twice as fas as the formula I have to use.
Wednesday I woke up at 0200. Wide awake, and from the feel of things. I'd drooled a bucket or two out. Not drool, blood. All down my chin, into the middle of my chest. It was pretty spooky. I was hacking it out of my trach, and suctioning it out of my mouth. Well, lets see, it was dripping off my chin by the time I hit the bathroom to clear it up, and be cleaned up when Liz went to work about 3 AM. It took some doing, but I got all cleaned up and the mistake cleared completely up, before Liz came in and gave me a bye bye kiss. I hurried a lot. It helps to have two trach kits and two collars each. For a while I was taking the trach out while I showered, but it took a hammer and extra time to drive it back in. It seems there are two flaps of skin that are normally tucked in behind the and along side the tube. If I leave it out too long then the two flaps of skins work against the tube and it's a royal pain in the ass getting them back in.
I brought up the bleeding for a couple of reasons, and they are both personal. What if Liz had seen that amount of blood on me? Would she have assumed the worst and had a freak out? I don't know, and it's why I'm glad I woke up ahead of everyone. I shiver with the bought the kids might have found me. I figure they are in enough trauma the way it is, and don't need that to help them out. It's why Hospice is bringing up going to Hospice House. So far, me bleeding isn't so bad that I can't keep the worst of the problem out of the kids faces. I do know, that it if gets to the point I can't, then it's off to the Hospice House.
Like I said, Friday was pain day. I used a lot more of my morphine Friday than I had the first couple of weeks since I got it. It didn't matter what I was doing, I hurt. All the way up to "Fuck this, let me die" bad down to, "I like Mr Morphine". It was up and down like that all day long. Every time I tried to doze off, POW, a nice, double fisted shot of pain. Pain was the only thing that made Liz openly cry when we were discussing things with Hospice. The nurse was talking about farther down the road with me, and how we could control certain things. Liz got all teary eyed and said "I just don't want him to suffer or be in pain". The nurse told her how they assess patients, and that seemed to help quite a bit.
I'm glad it did, I hate to see my sweetheart cry, even more so over me.
I woke up at my usual 0330 on Saturday, got a shower and cleaned up, changed tubes and put on fresh bandages. The skin around my trach is getting weak and thin. It tends to bleed a little, so I'm giving it a break from the bandaids and using some gauze. Perhaps that will let the skin dry out enough I can get a handle on the bleeding part just a touch. I grabbed the paper, fixed my formula in the feed bag, hooked up, and had every intention of making it to Starbucks for coffee and to read the paper. None of that turned out quite like I'd expected it to. I fell asleep, for over an hour. Sure, the feed bag and the lines were empty, good thing. But it was also nearly 0600. I missed the buds by over an hour.
Rats. Okay. I'll wait a while and fix the pancakes with blueberries that Sarah bought on Friday. Cool. Fell asleep with the paper on my chest. Stayed that way until 0730. Good lord, the day is getting away from me. Got up, made the pancakes, as well as an apple flambé to put on top of the pancakes rather than just maple syrup. That was wonderful, I hope. Liz ate some, the Boy ate some. Not sure when the other two ate any, or if they did or not. Two shining reviews was enough for me.
Read a little of the book The Boy bought me. Fell asleep, hard to believe, for two hours. Sheesh. Read some more of the book, watched some football. Fell asleep again. Woke up coughing and bleeding. The new twist that was to stay with me the rest of the day. Sleep, bleed, sleep, bleed. The bleeding wasn't ever for very long, except the last time about 1900. That bled a long time, and seemingly a lot of blood as well. Now, I have to wonder if I'd been bleeding somewhere that was going into my stomach since I'd been so sleepy. It was enough to make me suspicious. Okay, with further thought, I don't think that happened or I'd not been able to stuff formula in there at all. I remembered back to early July when I was just beginning to swallow a little. How very little mucus swallowing made me overly full when I fed. So I ruled that out pretty quickly. Checking both the suction pots, I was even more certain the bleeding was all staying to the outside and not to the swallow or esophagus below the point I can swallow. Liz and I did get some time to be next to each other and talk about stupid shit for a change. I like and miss those days. So much of my time seems to be spent around me that there doesn't seem to be any time for "Us". That's something I'm working on. And working on it hard enough that I will be willing to lay off some of my comfort for just a little more "LiznMe" time.
When they first say a year, maybe less. Or a year for certain with the chemo on clinical trial. Liz and I both decided that it was enough and not to take the extra chemo. Since all it did was bring on a couple of weeks to a month more time, and wasn't a cure, we said "No thanks, no use in me being sick for maybe a couple of weeks extra time." It's damn funny, though, how when something new gets added to the list of things that are going on with my body, how much less time I think I have. Realistically I didn't think I'd make it past February. I'm still thinking that. I had a few bad days in a row, and physiologically I thought that was going to be a big speed up time. No, and being honest, no. It's more the step up in bleeding and the need for so much sleep that makes me think that it's speeding up. Not some time where I had three or four days in a row that were less that stellar. I'm bleeding a bit this morning, and I'm also super tired. I've fallen asleep twice doing the blog so far. (I gotta say, it's damn funny to wake up and see a complete page of zzzzz. Even makes me laugh out loud). So, yes, I do think it's speeding up a bit. From my "Bye Rock" cook out until now, I can see a big difference in my ability to get around. The pain patches, I've got to see about getting those upped one more time. I think 75 is as high as they go. I will find out. Other wise it's gonna be another bottle of stuff I'll take via syringe and feeding tube three or four times a day. I can tell when the patches are getting a little worse. I certainly ache more, and the jaw pain is certainly more pronounced. I changed patches late last night and things are on a pretty even keel so far this morning. I do know that I've had to take the Morphine from .5 to 1.0 per dose to make it work. It's nice to use it sublingually. It goes to work like right now. There's another deal I've got to ask about. If I put the pain patches over a pulse point, will they work better? I've used some supplements that needed to be applied to pulse points. (behind the knees, inside elbows, behind ears). I put the scopolamine patches behind my ears, and I notice a pretty fast call on how they work. They are for motion sickness, I'm using them to help reduce my mucus production.
I'm noticing as well, that when I get tired, I get the shakes. I hate the shakes. The only shakes I liked was from working out and training to complete muscle failure. Where I'd be lifting with dumbbells and would go until I couldn't move them any more. I've had them quit mid lift, which is pretty scary. 110lbs coming back down at you is a bit spooky. But, in all the time I've lifted weights, I've only dinked an eye once. Doing skull crushers, the dumbbell got away from me and dotted my eye. Looked cool, felt foolish. So, back to the shakes. I noticed it last night handing the note pad back and forth with Liz. I could sling it out there, but if she didn't grab it right away, I was shaking. I don't know if it's fatigue, lack of strength, or exactly what. Lack of strength would really chap my ass. the note pad can't weigh eight ounces. Boy, if that is giving me the shakes, I'm glad it's not a beer. Talk about humiliating, if holding a can of Coors out would make me shake like that. Shameful. The shaking, I think is fatigue. I fatigue quickly no matter what I'm doing. I'm almost certain that I'm going to be shaking all over while I make cookies later today. That, too, is part of the reason I believe the end is coming up faster than I'd like it to. In the beginning 6-12 months seemed like a long time. Now it's all too short, that's for sure.
Sometime back in the day, when we lived in Great Bend Ks, with our mobile home backed right up against the flood control berm, and the Arkansas River actually flowed from the border to there, we had a flood. Huge rains west of us around Garden City clear back west to the city where they dammed up the Arkansas in Colorado. No, not clear up into the mountains to it's head waters, but on the front, in the plains. It had come a rain like a cow pissin on a flat rock. Two or so days later the water was catching up with the flow at Great Bend and the flood control berm began to fill. That was pretty slick, it got within 2 or so feet of going over the top. I'd been paying attention to the river for a while, and had noticed that there were places where Cotton Mouth Snakes had gathered up, and learned to stay away from those places. But, I grab the trusty BB gun and head out to look at the berm for a mile or in either direction from the house. I'd gone about 100' and was looking up at the trees. I started noticing a few snakes in the trees, bull snakes, coach whips, those kind of snakes. Until I saw a big knot. Lots of snakes all gathered up in a couple of trees. I'd never seen anything like that before. So I started to go check it out. I ended up running as fast as my little feet would carry me. The knots were all full of Cotton Mouths. Sppppoooooooky shit! I didn't walk the berm again for almost two weeks. That many Cotton Mouth's in one place was a big red flag for me. And, it bothered me enough, I've been a bit more leery of snakes ever since. Yuck!!!
Wednesday I woke up at 0200. Wide awake, and from the feel of things. I'd drooled a bucket or two out. Not drool, blood. All down my chin, into the middle of my chest. It was pretty spooky. I was hacking it out of my trach, and suctioning it out of my mouth. Well, lets see, it was dripping off my chin by the time I hit the bathroom to clear it up, and be cleaned up when Liz went to work about 3 AM. It took some doing, but I got all cleaned up and the mistake cleared completely up, before Liz came in and gave me a bye bye kiss. I hurried a lot. It helps to have two trach kits and two collars each. For a while I was taking the trach out while I showered, but it took a hammer and extra time to drive it back in. It seems there are two flaps of skin that are normally tucked in behind the and along side the tube. If I leave it out too long then the two flaps of skins work against the tube and it's a royal pain in the ass getting them back in.
I brought up the bleeding for a couple of reasons, and they are both personal. What if Liz had seen that amount of blood on me? Would she have assumed the worst and had a freak out? I don't know, and it's why I'm glad I woke up ahead of everyone. I shiver with the bought the kids might have found me. I figure they are in enough trauma the way it is, and don't need that to help them out. It's why Hospice is bringing up going to Hospice House. So far, me bleeding isn't so bad that I can't keep the worst of the problem out of the kids faces. I do know, that it if gets to the point I can't, then it's off to the Hospice House.
Like I said, Friday was pain day. I used a lot more of my morphine Friday than I had the first couple of weeks since I got it. It didn't matter what I was doing, I hurt. All the way up to "Fuck this, let me die" bad down to, "I like Mr Morphine". It was up and down like that all day long. Every time I tried to doze off, POW, a nice, double fisted shot of pain. Pain was the only thing that made Liz openly cry when we were discussing things with Hospice. The nurse was talking about farther down the road with me, and how we could control certain things. Liz got all teary eyed and said "I just don't want him to suffer or be in pain". The nurse told her how they assess patients, and that seemed to help quite a bit.
I'm glad it did, I hate to see my sweetheart cry, even more so over me.
I woke up at my usual 0330 on Saturday, got a shower and cleaned up, changed tubes and put on fresh bandages. The skin around my trach is getting weak and thin. It tends to bleed a little, so I'm giving it a break from the bandaids and using some gauze. Perhaps that will let the skin dry out enough I can get a handle on the bleeding part just a touch. I grabbed the paper, fixed my formula in the feed bag, hooked up, and had every intention of making it to Starbucks for coffee and to read the paper. None of that turned out quite like I'd expected it to. I fell asleep, for over an hour. Sure, the feed bag and the lines were empty, good thing. But it was also nearly 0600. I missed the buds by over an hour.
Rats. Okay. I'll wait a while and fix the pancakes with blueberries that Sarah bought on Friday. Cool. Fell asleep with the paper on my chest. Stayed that way until 0730. Good lord, the day is getting away from me. Got up, made the pancakes, as well as an apple flambé to put on top of the pancakes rather than just maple syrup. That was wonderful, I hope. Liz ate some, the Boy ate some. Not sure when the other two ate any, or if they did or not. Two shining reviews was enough for me.
Read a little of the book The Boy bought me. Fell asleep, hard to believe, for two hours. Sheesh. Read some more of the book, watched some football. Fell asleep again. Woke up coughing and bleeding. The new twist that was to stay with me the rest of the day. Sleep, bleed, sleep, bleed. The bleeding wasn't ever for very long, except the last time about 1900. That bled a long time, and seemingly a lot of blood as well. Now, I have to wonder if I'd been bleeding somewhere that was going into my stomach since I'd been so sleepy. It was enough to make me suspicious. Okay, with further thought, I don't think that happened or I'd not been able to stuff formula in there at all. I remembered back to early July when I was just beginning to swallow a little. How very little mucus swallowing made me overly full when I fed. So I ruled that out pretty quickly. Checking both the suction pots, I was even more certain the bleeding was all staying to the outside and not to the swallow or esophagus below the point I can swallow. Liz and I did get some time to be next to each other and talk about stupid shit for a change. I like and miss those days. So much of my time seems to be spent around me that there doesn't seem to be any time for "Us". That's something I'm working on. And working on it hard enough that I will be willing to lay off some of my comfort for just a little more "LiznMe" time.
When they first say a year, maybe less. Or a year for certain with the chemo on clinical trial. Liz and I both decided that it was enough and not to take the extra chemo. Since all it did was bring on a couple of weeks to a month more time, and wasn't a cure, we said "No thanks, no use in me being sick for maybe a couple of weeks extra time." It's damn funny, though, how when something new gets added to the list of things that are going on with my body, how much less time I think I have. Realistically I didn't think I'd make it past February. I'm still thinking that. I had a few bad days in a row, and physiologically I thought that was going to be a big speed up time. No, and being honest, no. It's more the step up in bleeding and the need for so much sleep that makes me think that it's speeding up. Not some time where I had three or four days in a row that were less that stellar. I'm bleeding a bit this morning, and I'm also super tired. I've fallen asleep twice doing the blog so far. (I gotta say, it's damn funny to wake up and see a complete page of zzzzz. Even makes me laugh out loud). So, yes, I do think it's speeding up a bit. From my "Bye Rock" cook out until now, I can see a big difference in my ability to get around. The pain patches, I've got to see about getting those upped one more time. I think 75 is as high as they go. I will find out. Other wise it's gonna be another bottle of stuff I'll take via syringe and feeding tube three or four times a day. I can tell when the patches are getting a little worse. I certainly ache more, and the jaw pain is certainly more pronounced. I changed patches late last night and things are on a pretty even keel so far this morning. I do know that I've had to take the Morphine from .5 to 1.0 per dose to make it work. It's nice to use it sublingually. It goes to work like right now. There's another deal I've got to ask about. If I put the pain patches over a pulse point, will they work better? I've used some supplements that needed to be applied to pulse points. (behind the knees, inside elbows, behind ears). I put the scopolamine patches behind my ears, and I notice a pretty fast call on how they work. They are for motion sickness, I'm using them to help reduce my mucus production.
I'm noticing as well, that when I get tired, I get the shakes. I hate the shakes. The only shakes I liked was from working out and training to complete muscle failure. Where I'd be lifting with dumbbells and would go until I couldn't move them any more. I've had them quit mid lift, which is pretty scary. 110lbs coming back down at you is a bit spooky. But, in all the time I've lifted weights, I've only dinked an eye once. Doing skull crushers, the dumbbell got away from me and dotted my eye. Looked cool, felt foolish. So, back to the shakes. I noticed it last night handing the note pad back and forth with Liz. I could sling it out there, but if she didn't grab it right away, I was shaking. I don't know if it's fatigue, lack of strength, or exactly what. Lack of strength would really chap my ass. the note pad can't weigh eight ounces. Boy, if that is giving me the shakes, I'm glad it's not a beer. Talk about humiliating, if holding a can of Coors out would make me shake like that. Shameful. The shaking, I think is fatigue. I fatigue quickly no matter what I'm doing. I'm almost certain that I'm going to be shaking all over while I make cookies later today. That, too, is part of the reason I believe the end is coming up faster than I'd like it to. In the beginning 6-12 months seemed like a long time. Now it's all too short, that's for sure.
Sometime back in the day, when we lived in Great Bend Ks, with our mobile home backed right up against the flood control berm, and the Arkansas River actually flowed from the border to there, we had a flood. Huge rains west of us around Garden City clear back west to the city where they dammed up the Arkansas in Colorado. No, not clear up into the mountains to it's head waters, but on the front, in the plains. It had come a rain like a cow pissin on a flat rock. Two or so days later the water was catching up with the flow at Great Bend and the flood control berm began to fill. That was pretty slick, it got within 2 or so feet of going over the top. I'd been paying attention to the river for a while, and had noticed that there were places where Cotton Mouth Snakes had gathered up, and learned to stay away from those places. But, I grab the trusty BB gun and head out to look at the berm for a mile or in either direction from the house. I'd gone about 100' and was looking up at the trees. I started noticing a few snakes in the trees, bull snakes, coach whips, those kind of snakes. Until I saw a big knot. Lots of snakes all gathered up in a couple of trees. I'd never seen anything like that before. So I started to go check it out. I ended up running as fast as my little feet would carry me. The knots were all full of Cotton Mouths. Sppppoooooooky shit! I didn't walk the berm again for almost two weeks. That many Cotton Mouth's in one place was a big red flag for me. And, it bothered me enough, I've been a bit more leery of snakes ever since. Yuck!!!
Friday, December 20, 2013
It Happens Fast, Don't It?
A few weeks or even months ago, changes in my body, how it worked, what it was doing, how the cancer was affecting things, that happened slowly enough I had to really focus on one particular area to notice what had changed. That's not the case now. Things change REALLY fast! Such as going from being just fine one minute, to coughing up copius amounts of blood from my trach and mouth the next. As in that's what happened this morning. I felt a cough building up. So I gathered my goodies, threw away all my trash, waved bye bye, and the second my ass hit the car seat I was hacking up beautiful bright red blood. Suctioned some out of my mouth before it was running down my chin and onto my chest. I'm no martial artist, I'm not trained in grappling or hand to hand combat, but I can handle myself pretty well in a fight if I have the need. Okay, lets make that used to have that ability. A few years back, a nice young man asked if I'd show him how to defend himself. After some discussion about how I'm not a trained person, and that I just do what feels natural, I reluctantly agreed. After about 20 minutes, and some mistakenly too strong knees to his thigh and hip, I said we needed a break before one of us gets mad. One of us was already mad, and I didn't notice. I turned my face away from his and got cheap shot. Not bad either, since it broke my nose…again. Well, I don't think he was expecting it, but I grabbed his throat, turned him around and was just starting to put him to done with a little nap time. When I got him all situated where I wanted him (leaning back to take his ability to really move) I whispered, "Shit happens fast, don't it?" Then he had a little nap time. Not long, since I only held on long enough for him to go out, but long enough to make an impact on what I told him. I'm glad I matured just a little, 25 years before that he might have woken up with a couple of broken fingers on each hand as a reminder not to mess with people you don't know.
It turns out, that's exactly how the cancer growth is affecting me now. It's damn fast, sometimes I have enough time to sort out how to adapt, most of the time I'm playing catch up with the changes. The bleeding issue is the most bothersome. I've said there are things I don't mention on the blog, or some that I don't talk about as they happen. The new and more pronounced bleeding is one of the latter. It caught me unaware Monday at my therapy session. I knew what it was when it hit, by the taste in my mouth, but I was shocked that I didn't have the prelude that normally goes with the hit. Then, Wednesday, it got me very early in the morning. Liz has changed work hours so she goes in at close to 0300. Something woke me up at 0150, I felt wet on my chest, and that's not in the normal. Since I don't lie flat, things I drool run down my chin, neck, then chest. I look down, and low and behold I've got a river of blood running my chin to the middle of my chest. No wonder I felt wet!!! Okay, so suction a poke of blood out of my mouth, fold the shirt so it sucks up and catches the river before it hits the chair, grab the portable suction and head to the bathroom. I'm telling ya, it was a damn mess, and a near fist fight getting that straightened out. Shit happened fast, baby, way fast. I'd been tasked with talking to the family about whether or not to stay home or go to Hospice House when the bleeding got so overwhelming that I can't deal with it alone. Wednesday settled that for me. Can you imagine how horrifying it would be to one of my children to find dad soaking in his own blood and having already died? No, no damn way they are going to have to see that.
Some of the other less nasty aspects of that is the sudden need for oodles more sleep during the day. That's not so bad, actually, since I'm also sleeping better at night as well. This too is something the Doc and I discussed in rapid fashion my last trip to MD Anderson. I wish I'd pressed him more for a generalization of a timeline for the various stages, but I'm going out on a limb and say the bleeding and the extra sleep need is probably in the hallway with Critical Mass up ahead. Still a distance out, but not nearly as far as a month ago. Since this is my first attempt at a terminal disease and prognosis, I'm kind of flying by ear. My warped sense of humor just hit with that "first attempt" remark. Run with it, he said, it'll be funny he said. So I will. First attempt at a terminal disease and prognosis, I wonder if I skip a step, does that mean I go back and have to start all over? I mean, damn, it would be easier to do if I had that extra knowledge about what to expect. It would make the transition time smoother for certain. It's also a damn shame that isn't how it works. One thing I have discovered is that when I'm bleeding particularly hard out of my mouth, that the tumors that are irritated are far back in my throat, and they plug off my intake of air through my nose. Yes, I'm using the trach and some of my nose to inhale air when I breath. If I leave the inner canula in my trach tube, I can't bring enough air in fast enough, and my blood ox starts getting lower and lower. As in 88 one time at therapy. I pulled the inner canula out and that jumped to 93 in a matter of two minutes, possibly less. I also have coughed up a couple of clots when the inner piece was out and those clots plugged the tube. Let's put that one down as "fucking near all out panic" when you can't draw a breath from any of my normal spots. Close enough to panic that I struggled getting the collar undone so I could pull the trach tube and get breathing again.
Remember my old saying "Panic Kills", it damn sure would have if I'd not kept it somewhat together.
I've found a couple of new places that are exceptionally hard but not tender to the touch, which leads me to believe they are cancer tumors. I do know that some of them are in areas where I have had surgery. Some of the tightness is certainly from that and left over damage from the radiation I'd gotten almost 5 years ago. In fact, I started radiation therapy five years ago next week. I did two treatments in one day, twice. Once for Christmas, once again for New Year's Eve. If possible, do not attempt to talk your radiation Oncologist into letting you do anything quite so foolhardy as that. Those to therapy days were like being hit by a bus, and a week later, being found still being dragged by the bus. No, that was foolish. So much for being Muy Macho! The new areas already had some degree of "hardness" for lack of a better word. but the surface area didn't change and increase as it's doing now. The jaw also is getting more of a constant thumping, like a tooth ache, only not quite that bad yet. Okay, sometimes it is that bad. The morphine slows that down, but I like to use it sparingly, not because I'd get addicted, but because to me it's an emergency medicine. For when the pain is so bad I have trouble using the little syringe they sent with it. Probably a little too late by then, but since it's used sublingually the lag time for relief is close to nil. With the lortab having to go through the PEG tube, the lag time to relief is close to twenty minutes. I prefer the morphine.
One bright summers day I was having lunch at Ken's Pizza in Liberal Ks, then heading to the house to fiddle around before resting up prior to the coming nights fun and games. I don't recall why we were home from the rig on a Friday. It will come to me soon enough. Anyway, I take a right and head up Kansas Avenue toward downtown when a Volkswagen Bug comes out of the Firestone Tire shop and promptly looses her left rear tire and rim. It goes merrily on it's way across Kansas and stops at the west curb. I don't recall what was on that corner, there's a convenience store there now. I stop close in behind the lady and hit the flashers. I parked at an angle behind her since loosing the wheel put her a little into both lanes. A couple of other fellas stopped off the road and were standing with me. I wish I could remember who the two dudes that stopped with me were! Damn, old man memory anyway. Man, I can see in my minds eye everything so clearly except the guys who helped out faces. Weird, huh? The bug was a standard cream color with grey interior, but not a super beetle. The Bug had Finney County tags. The lady, an attractive strawberry blonde, was very nervous and shaken up, so I asked why she'd stopped in Liberal. She said she was just going out for a drive, since it was so pretty, and ended up in Liberal where she blew a tire close to the Firestone store. Her other 3 tires where in really bad shape so she bought four new times. (I still can't remember who was there! It's gonna run me bat shit!) So, one of the guys has run down the street and picked up the tire that ran away, we've found all the lug bolts (bolts on a Bug, not nuts) and the guys were wondering what to do. The lady had no jack. I grabbed the bumper with my back to the car, and stood up. I needed help holding it, so one of the other guys grabbed on and we were able to get it high enough the third guy got the tire on and used the ladies' own wrench to tighten the bolts. We were walking back to our cars talking and laughing and deciding we all earned a beer, which we had. I got in my car, and parked on the east side of the street, the other two guys were parked just ahead of me. We looked in the Firestone shops door, there were 3 tire men standing there, and they turned the sign around from "Closed" to "Open". I think the general consensus between the three of us was that those guys were complete pricks, which we yelled at them in a most vociferous manner. We never did get that beer, not was I sharp enough at the time to get the nice woman, who I believe to be just a bit older than myself, phone number. To live and learn
Have fun today, kids. Remember, a gentle pat on the back is more effective than a kind word.
It turns out, that's exactly how the cancer growth is affecting me now. It's damn fast, sometimes I have enough time to sort out how to adapt, most of the time I'm playing catch up with the changes. The bleeding issue is the most bothersome. I've said there are things I don't mention on the blog, or some that I don't talk about as they happen. The new and more pronounced bleeding is one of the latter. It caught me unaware Monday at my therapy session. I knew what it was when it hit, by the taste in my mouth, but I was shocked that I didn't have the prelude that normally goes with the hit. Then, Wednesday, it got me very early in the morning. Liz has changed work hours so she goes in at close to 0300. Something woke me up at 0150, I felt wet on my chest, and that's not in the normal. Since I don't lie flat, things I drool run down my chin, neck, then chest. I look down, and low and behold I've got a river of blood running my chin to the middle of my chest. No wonder I felt wet!!! Okay, so suction a poke of blood out of my mouth, fold the shirt so it sucks up and catches the river before it hits the chair, grab the portable suction and head to the bathroom. I'm telling ya, it was a damn mess, and a near fist fight getting that straightened out. Shit happened fast, baby, way fast. I'd been tasked with talking to the family about whether or not to stay home or go to Hospice House when the bleeding got so overwhelming that I can't deal with it alone. Wednesday settled that for me. Can you imagine how horrifying it would be to one of my children to find dad soaking in his own blood and having already died? No, no damn way they are going to have to see that.
Some of the other less nasty aspects of that is the sudden need for oodles more sleep during the day. That's not so bad, actually, since I'm also sleeping better at night as well. This too is something the Doc and I discussed in rapid fashion my last trip to MD Anderson. I wish I'd pressed him more for a generalization of a timeline for the various stages, but I'm going out on a limb and say the bleeding and the extra sleep need is probably in the hallway with Critical Mass up ahead. Still a distance out, but not nearly as far as a month ago. Since this is my first attempt at a terminal disease and prognosis, I'm kind of flying by ear. My warped sense of humor just hit with that "first attempt" remark. Run with it, he said, it'll be funny he said. So I will. First attempt at a terminal disease and prognosis, I wonder if I skip a step, does that mean I go back and have to start all over? I mean, damn, it would be easier to do if I had that extra knowledge about what to expect. It would make the transition time smoother for certain. It's also a damn shame that isn't how it works. One thing I have discovered is that when I'm bleeding particularly hard out of my mouth, that the tumors that are irritated are far back in my throat, and they plug off my intake of air through my nose. Yes, I'm using the trach and some of my nose to inhale air when I breath. If I leave the inner canula in my trach tube, I can't bring enough air in fast enough, and my blood ox starts getting lower and lower. As in 88 one time at therapy. I pulled the inner canula out and that jumped to 93 in a matter of two minutes, possibly less. I also have coughed up a couple of clots when the inner piece was out and those clots plugged the tube. Let's put that one down as "fucking near all out panic" when you can't draw a breath from any of my normal spots. Close enough to panic that I struggled getting the collar undone so I could pull the trach tube and get breathing again.
Remember my old saying "Panic Kills", it damn sure would have if I'd not kept it somewhat together.
I've found a couple of new places that are exceptionally hard but not tender to the touch, which leads me to believe they are cancer tumors. I do know that some of them are in areas where I have had surgery. Some of the tightness is certainly from that and left over damage from the radiation I'd gotten almost 5 years ago. In fact, I started radiation therapy five years ago next week. I did two treatments in one day, twice. Once for Christmas, once again for New Year's Eve. If possible, do not attempt to talk your radiation Oncologist into letting you do anything quite so foolhardy as that. Those to therapy days were like being hit by a bus, and a week later, being found still being dragged by the bus. No, that was foolish. So much for being Muy Macho! The new areas already had some degree of "hardness" for lack of a better word. but the surface area didn't change and increase as it's doing now. The jaw also is getting more of a constant thumping, like a tooth ache, only not quite that bad yet. Okay, sometimes it is that bad. The morphine slows that down, but I like to use it sparingly, not because I'd get addicted, but because to me it's an emergency medicine. For when the pain is so bad I have trouble using the little syringe they sent with it. Probably a little too late by then, but since it's used sublingually the lag time for relief is close to nil. With the lortab having to go through the PEG tube, the lag time to relief is close to twenty minutes. I prefer the morphine.
One bright summers day I was having lunch at Ken's Pizza in Liberal Ks, then heading to the house to fiddle around before resting up prior to the coming nights fun and games. I don't recall why we were home from the rig on a Friday. It will come to me soon enough. Anyway, I take a right and head up Kansas Avenue toward downtown when a Volkswagen Bug comes out of the Firestone Tire shop and promptly looses her left rear tire and rim. It goes merrily on it's way across Kansas and stops at the west curb. I don't recall what was on that corner, there's a convenience store there now. I stop close in behind the lady and hit the flashers. I parked at an angle behind her since loosing the wheel put her a little into both lanes. A couple of other fellas stopped off the road and were standing with me. I wish I could remember who the two dudes that stopped with me were! Damn, old man memory anyway. Man, I can see in my minds eye everything so clearly except the guys who helped out faces. Weird, huh? The bug was a standard cream color with grey interior, but not a super beetle. The Bug had Finney County tags. The lady, an attractive strawberry blonde, was very nervous and shaken up, so I asked why she'd stopped in Liberal. She said she was just going out for a drive, since it was so pretty, and ended up in Liberal where she blew a tire close to the Firestone store. Her other 3 tires where in really bad shape so she bought four new times. (I still can't remember who was there! It's gonna run me bat shit!) So, one of the guys has run down the street and picked up the tire that ran away, we've found all the lug bolts (bolts on a Bug, not nuts) and the guys were wondering what to do. The lady had no jack. I grabbed the bumper with my back to the car, and stood up. I needed help holding it, so one of the other guys grabbed on and we were able to get it high enough the third guy got the tire on and used the ladies' own wrench to tighten the bolts. We were walking back to our cars talking and laughing and deciding we all earned a beer, which we had. I got in my car, and parked on the east side of the street, the other two guys were parked just ahead of me. We looked in the Firestone shops door, there were 3 tire men standing there, and they turned the sign around from "Closed" to "Open". I think the general consensus between the three of us was that those guys were complete pricks, which we yelled at them in a most vociferous manner. We never did get that beer, not was I sharp enough at the time to get the nice woman, who I believe to be just a bit older than myself, phone number. To live and learn
Have fun today, kids. Remember, a gentle pat on the back is more effective than a kind word.
Thursday, December 19, 2013
God, I Hope This Has Some Continuity To It
Yep, and shake it 'til it's teeth rattle. Somebody has to do this, I'm getting too weak to do it alone. I can certainly seize the day by the throat, but I can't shake it until it's teeth rattle. Just not enough strength left to do that. Just so we are all clear, my day now is nothing compared to what it was 18 months ago. No way, no how. I was cleared by CT and examination both, of having any cancer what so ever. I was feeling pretty damn salty every day, I was 80%, maybe a bit more, of having my Pre Cancer strength back. I was really hitting my stride at work. Home was wonderful, but it always has been. Home has always been my island, the one place where any problem that came up wasn't as terrible as one might think. Now, since my bleeding is accelerating, home is something I may have to abandon in order to save my children from a pretty nasty sight. And to save Liz, Sarah, and Addison the worry of watching over me as I slide ever faster toward Critical Mass. A seemingly simple decision, one would think, but that just isn't the case.
It's not simple because the Hospice House is, unless I'm terribly mistaken, is fifteen or so miles away in Odessa. That means if they come over there to visit, they've got to travel two of the worst highways in the Midland/Odessa area. These peckerwoods out here have no sense at all when they get behind the wheel. They drive under the speed limit on the inside lane of 4 lane highways. I assume that's a simple problem of being too damn stupid to know better, or that it's closer to "I don't give a fuck, and you can't make me". I believe it's more of the second than the first. Two people have died on the one of the highways because some ignorant cock muncher saw he needed to exit, so instead of changing lanes and going up one exit and circling back, they just cut across all the traffic lanes to make the exit. Fucking genius. The other two ways getting there and back aren't any better. So, if I factor in everything as worst possible outcome, it makes it a difficult decision. Yes, I'm going to Hospice House when the bleeding gets worse. And man, am I bleeding this morning. So far for an hour and fifteen minutes from the time I first woke up and had to clear my trach. And I can tell before I even was close to coughing. I'm getting very used to the taste of warm, fresh blood. I feel almost like Bela Lugosi. Oh now, you know, Dracula? The first Dracula of the big screen.
Here's the shits about this bleeding bullshit. It's not consistent in any fashion. I started out bleeding a lot from my mouth. Then more, or I assume, from my throat beneath my tracheotomy. Now it's back to both places and is nearly stopped. I'm also going to assume that my coughing spells that trigger the bleeding (from overly irritating the tumor site), are a large part of getting the bleeding started. There's also the chance that I am sleeping with my mouth open and that is irritating the back of my throat and I start to cough. Not that it matters, really, how it starts it's how it finishes that matters to me. If I get away with that very hard coughing, then there's a chance I could stay home longer. Let us not hold our breath for that, shall we? When any new symptom shows up, the first thing I do is sit down. Close my eyes, and search for the memory of everything the Doctor told me in my last visit to MD Anderson. If I get stuck, then I hunt for any type of recall device I've used. You know, going back over the day you're needing to recall, and searching for something that jogs our the specific memory you need. This one, where the Doc told me about the bleeding, was hidden in a reflection. When we were talking, I looked up and to one side and saw myself in a mirror. So I hopped up, went to the bathroom, looked in the mirror, and can tell you that yes, the Doc did tell me about how badly the bleeding is going to get. I won't go into details since I asked him for the worst case scenario, but it's bad man.
My Hospice nurse has already told their people that I'm on the list to be there. He didn't say when, but I can say for certain, not until after the first of the year. My oldest son and his family are coming to visit shortly after Christmas. I will be here for that, even if I have to hide myself in the master bathroom for the time he is here, just to take care of the bleeding. I'll be here for his visit. There's not enough people in town to drag me off if I set myself to being home for his visit.
I'll be doing some checking out of the Hospice House. I'll be overly pissed off if they don't have secure WIFI for me to use so I can keep up the blog easily. I will keep up with it, regardless. But man, doing it on the phone with the tiny keyboard is going to suck mule wieners. I was asked yesterday, by one of my friends in private message, if I was going to write one or two blogs to be published after I hit Critical Mass. I hadn't thought about it, but on the instant he mentioned that, I've decided to do just that. It seems only fitting, don't you think, to write one to be sent out after I croak. I'm not sure what I'll put in that last blog, though. Probably my overall thoughts of this entire process. Maybe I'll let Mr Temper out for some uncontrolled anger. I'm just not certain. I guess you'll all find out after I've hit Critical Mass.
Sorry the blog is so jumpy. I'm riding the Morphine Train out of Fugdathurts station. I was having some lovely make my eyes water and threatening to make me throw up pain this morning. I probably should have waited to write it, but what the hell, I only live once, right?
So let's see now, yesterday I said I'd tell about the Lab and my fight to get rid of a raccoon on the Lab's face. Let's see if I can remember this correctly.
The dogs and I, along with my little brother (because I couldn't go anywhere without mom making me take the little brother) had gone way back to the far northwest corner of the section the ranch was set upon. there were a couple of things back there that were pretty slick. Another pond, very deep but never stocked. It was fed by an artesian well that's walls had collapsed on and was now a pretty nice spring. The water was damn cold, too. There was also an outcropping of limestone and shale, probably 50' or more above the trail we walked. You had to keep your eyes open walking along side the wall there, the shale had places snakes could hide out in that put them about neck high on a kid, middle of the stomach high on a 6' adult. On top of that outcropping was some open grass with slabs of different sizes of limestone. It didn't look like a quarry, but I always wondered if it hadn't been some kind of fence post making place. the slabs were different sizes, but always about the same thickness of about 8" or so. the same as the limestone fence posts. There were some perfectly round stones there that Dad had taken to Fort Hays State to find out what they were. Turned out to be fossilized mussels. Pretty cool shit. I dragged one home that had a section of spine of some critter in it. Right down to seeing what I still believe to be spinal cord showing. Mom broke it throwing it at a rattlesnake in the driveway of the farm house. Very close to the where the sidewalk to get into the house started. So yes, it was a cool place to go look for shit.
On this little trip out there the dogs had something penned under one of those stone slabs. And what ever it was was very pissed off. Hiss, growl and carrying on something fierce. I could make the dogs leave it alone, it was only a matter of time that what ever it was, was going to be dug out by the Lab (his name was Rink, long assed name on his papers the old man got when he rescued him. I'll finish that right after I finish this) and the fight would be on. When we walked out a long ways from the house, I took a walking stick that had a particularly nasty knot on one end of it, a pocket knife, and at least a couple of quarts of water. No back pack. I put the water in an old gunny sack I found and tied it over one shoulder, hobo style.
I was right, the damn Lab had dug back far enough that the critter had had enough of being harassed and attacked the Lab. The two other dogs were scrappy, but they didn't want anything to do with this critter, and that was wise, I believe. The Lab never yelped or anything when the Raccoon grabbed his face and started in chewing on him, trying to get to his eyes. I freaked out, of course. The dog was trying to get a bite into the coon's middle, but the angle was wrong and the coon simply let the dog move his lower half around like he was chasing a water dish. On the top end, the coon was holding the dog's ears in his hands so he could chew more effectively on the Lab's face. It looked like it was working. The Lab started to try and shake the coon off, then tried to roll the coon off. No way, the Raccoon had a good place to fight from, and he knew it. I grabbed the walking stick, and used the particularly nasty knot to hit the raccoon in the side. I didn't have any real plan of what to do if I knocked him off and he started in after me, I just needed to get it off the dog. Three or four hits and I got the coon dislodged from the dog. He hit the ground, started at me (yes, I damn near pooped my pants) but the Lab got him by the neck and shook it to death. Only after the coon was dead did the other two dogs get close enough to look at the raccoon. I gave thought to skinning it and making a hat. Really? you ask. Yes, really. Daniel Boone was still on the boob tube every Saturday night on channel almost 12. But, in the fight I guess the dog got more of the Coon's middle than I thought. He was chewed to pieces, and the pelt was ruined by that and a couple of really nasty marks from the walking stick. We left it where it lay and headed home. We'd had a pretty big day, and I still needed to tend to the horse and check on the cattle in the Southwest quarter. It was along these lines that I decided no matter how cool it looked, there was just too damn much work in ranching or farming. I was beginning to think Big Game Hunter in Africa would be a good job. Around a month or so after that, the Rents took us the the Sky Vu Drive In in Russell to watch The Hellfighters with John Wayne. That was my job, I'd decided, putting out burning oil and gas wells. I mean shit, how cool is that stuff, right? Real danger, high explosives, world travel. Oh yeah, I'd find a way to do that.
I have to get coffee later in the day. The Morphine Train kicked my ass and I slept for an hour right here holding the lap top on my lap.
Hugs and all that goes with them.
It's not simple because the Hospice House is, unless I'm terribly mistaken, is fifteen or so miles away in Odessa. That means if they come over there to visit, they've got to travel two of the worst highways in the Midland/Odessa area. These peckerwoods out here have no sense at all when they get behind the wheel. They drive under the speed limit on the inside lane of 4 lane highways. I assume that's a simple problem of being too damn stupid to know better, or that it's closer to "I don't give a fuck, and you can't make me". I believe it's more of the second than the first. Two people have died on the one of the highways because some ignorant cock muncher saw he needed to exit, so instead of changing lanes and going up one exit and circling back, they just cut across all the traffic lanes to make the exit. Fucking genius. The other two ways getting there and back aren't any better. So, if I factor in everything as worst possible outcome, it makes it a difficult decision. Yes, I'm going to Hospice House when the bleeding gets worse. And man, am I bleeding this morning. So far for an hour and fifteen minutes from the time I first woke up and had to clear my trach. And I can tell before I even was close to coughing. I'm getting very used to the taste of warm, fresh blood. I feel almost like Bela Lugosi. Oh now, you know, Dracula? The first Dracula of the big screen.
Here's the shits about this bleeding bullshit. It's not consistent in any fashion. I started out bleeding a lot from my mouth. Then more, or I assume, from my throat beneath my tracheotomy. Now it's back to both places and is nearly stopped. I'm also going to assume that my coughing spells that trigger the bleeding (from overly irritating the tumor site), are a large part of getting the bleeding started. There's also the chance that I am sleeping with my mouth open and that is irritating the back of my throat and I start to cough. Not that it matters, really, how it starts it's how it finishes that matters to me. If I get away with that very hard coughing, then there's a chance I could stay home longer. Let us not hold our breath for that, shall we? When any new symptom shows up, the first thing I do is sit down. Close my eyes, and search for the memory of everything the Doctor told me in my last visit to MD Anderson. If I get stuck, then I hunt for any type of recall device I've used. You know, going back over the day you're needing to recall, and searching for something that jogs our the specific memory you need. This one, where the Doc told me about the bleeding, was hidden in a reflection. When we were talking, I looked up and to one side and saw myself in a mirror. So I hopped up, went to the bathroom, looked in the mirror, and can tell you that yes, the Doc did tell me about how badly the bleeding is going to get. I won't go into details since I asked him for the worst case scenario, but it's bad man.
My Hospice nurse has already told their people that I'm on the list to be there. He didn't say when, but I can say for certain, not until after the first of the year. My oldest son and his family are coming to visit shortly after Christmas. I will be here for that, even if I have to hide myself in the master bathroom for the time he is here, just to take care of the bleeding. I'll be here for his visit. There's not enough people in town to drag me off if I set myself to being home for his visit.
I'll be doing some checking out of the Hospice House. I'll be overly pissed off if they don't have secure WIFI for me to use so I can keep up the blog easily. I will keep up with it, regardless. But man, doing it on the phone with the tiny keyboard is going to suck mule wieners. I was asked yesterday, by one of my friends in private message, if I was going to write one or two blogs to be published after I hit Critical Mass. I hadn't thought about it, but on the instant he mentioned that, I've decided to do just that. It seems only fitting, don't you think, to write one to be sent out after I croak. I'm not sure what I'll put in that last blog, though. Probably my overall thoughts of this entire process. Maybe I'll let Mr Temper out for some uncontrolled anger. I'm just not certain. I guess you'll all find out after I've hit Critical Mass.
Sorry the blog is so jumpy. I'm riding the Morphine Train out of Fugdathurts station. I was having some lovely make my eyes water and threatening to make me throw up pain this morning. I probably should have waited to write it, but what the hell, I only live once, right?
So let's see now, yesterday I said I'd tell about the Lab and my fight to get rid of a raccoon on the Lab's face. Let's see if I can remember this correctly.
The dogs and I, along with my little brother (because I couldn't go anywhere without mom making me take the little brother) had gone way back to the far northwest corner of the section the ranch was set upon. there were a couple of things back there that were pretty slick. Another pond, very deep but never stocked. It was fed by an artesian well that's walls had collapsed on and was now a pretty nice spring. The water was damn cold, too. There was also an outcropping of limestone and shale, probably 50' or more above the trail we walked. You had to keep your eyes open walking along side the wall there, the shale had places snakes could hide out in that put them about neck high on a kid, middle of the stomach high on a 6' adult. On top of that outcropping was some open grass with slabs of different sizes of limestone. It didn't look like a quarry, but I always wondered if it hadn't been some kind of fence post making place. the slabs were different sizes, but always about the same thickness of about 8" or so. the same as the limestone fence posts. There were some perfectly round stones there that Dad had taken to Fort Hays State to find out what they were. Turned out to be fossilized mussels. Pretty cool shit. I dragged one home that had a section of spine of some critter in it. Right down to seeing what I still believe to be spinal cord showing. Mom broke it throwing it at a rattlesnake in the driveway of the farm house. Very close to the where the sidewalk to get into the house started. So yes, it was a cool place to go look for shit.
On this little trip out there the dogs had something penned under one of those stone slabs. And what ever it was was very pissed off. Hiss, growl and carrying on something fierce. I could make the dogs leave it alone, it was only a matter of time that what ever it was, was going to be dug out by the Lab (his name was Rink, long assed name on his papers the old man got when he rescued him. I'll finish that right after I finish this) and the fight would be on. When we walked out a long ways from the house, I took a walking stick that had a particularly nasty knot on one end of it, a pocket knife, and at least a couple of quarts of water. No back pack. I put the water in an old gunny sack I found and tied it over one shoulder, hobo style.
I was right, the damn Lab had dug back far enough that the critter had had enough of being harassed and attacked the Lab. The two other dogs were scrappy, but they didn't want anything to do with this critter, and that was wise, I believe. The Lab never yelped or anything when the Raccoon grabbed his face and started in chewing on him, trying to get to his eyes. I freaked out, of course. The dog was trying to get a bite into the coon's middle, but the angle was wrong and the coon simply let the dog move his lower half around like he was chasing a water dish. On the top end, the coon was holding the dog's ears in his hands so he could chew more effectively on the Lab's face. It looked like it was working. The Lab started to try and shake the coon off, then tried to roll the coon off. No way, the Raccoon had a good place to fight from, and he knew it. I grabbed the walking stick, and used the particularly nasty knot to hit the raccoon in the side. I didn't have any real plan of what to do if I knocked him off and he started in after me, I just needed to get it off the dog. Three or four hits and I got the coon dislodged from the dog. He hit the ground, started at me (yes, I damn near pooped my pants) but the Lab got him by the neck and shook it to death. Only after the coon was dead did the other two dogs get close enough to look at the raccoon. I gave thought to skinning it and making a hat. Really? you ask. Yes, really. Daniel Boone was still on the boob tube every Saturday night on channel almost 12. But, in the fight I guess the dog got more of the Coon's middle than I thought. He was chewed to pieces, and the pelt was ruined by that and a couple of really nasty marks from the walking stick. We left it where it lay and headed home. We'd had a pretty big day, and I still needed to tend to the horse and check on the cattle in the Southwest quarter. It was along these lines that I decided no matter how cool it looked, there was just too damn much work in ranching or farming. I was beginning to think Big Game Hunter in Africa would be a good job. Around a month or so after that, the Rents took us the the Sky Vu Drive In in Russell to watch The Hellfighters with John Wayne. That was my job, I'd decided, putting out burning oil and gas wells. I mean shit, how cool is that stuff, right? Real danger, high explosives, world travel. Oh yeah, I'd find a way to do that.
I have to get coffee later in the day. The Morphine Train kicked my ass and I slept for an hour right here holding the lap top on my lap.
Hugs and all that goes with them.
Tuesday, December 17, 2013
So We Begin, Again. Poor old Michael Finnagin, Beginagain
Okay, so maybe "Begin Again" is a little overstated. It's more like "still" or "continuing", but neither one of those rhyme. And for some reason, that's the only part of that old Irish poem I remember, the line that ends the refrain. I know that eventually I'm going to run head on into Critical Mass, and that will be that. There's a very tiny part of me that says "Oh Thank God! Finally!", because that tiny part of me is tired of the fight. Then there's the really large part of me that says "No shit?? Oh hell no, I'm not even close to being done. Nope, can't allow that, not yet". I've been mentally and physically preparing myself for the time that Critical Mass arrives, knowing full well that I'm not really certain when it's going to be here. For 5 months I've been trying to steel my nerves into the realization that, fuck yeah, the cancer is gonna kill my body. Five months ain't enough time, you know. No where close to enough time. There are people I haven't seen yet, that I need to see, because in one way or another they helped make me, me. That sounds silly, and a touch sophomoric, I know. The fact remains that they've impacted my life for good or bad, and they deserve a hello in person, or as best as I can get around to it. It's not enough time to spend with the family either. I'd had these silly plans of all of us going on a one time vacation together. It wasn't going to be exotic, or overseas, or anything like that. Probably just a big assed cabin in the High Lonesome for a few days, because it would be quiet, and we could enjoy each others company better. I've not had enough time to impart upon my youngest son on how to live to be a stand up guy, because living to be a stand up guy is truly living, not just marking time. Anyway, Critical Mass is on it's way, whether or not I like it. Time to suck it up, pull on my big boy boots, and start learning to relax.
As some may know, yesterday I ran a late blog that also dealt with my bleeding issue that really kicked into overdrive yesterday. That's part of what brought me to the Critical Mass paragraph that opens todays blab. I've kind of gotten mixed reviews from the family on how long is long enough to stay before I go to Hospice House, where I can get full time help with my bleeding. And they may be able to control it some there, whereas at home, I can't control it very well. I can't control it well at home because we don't have the set up for it, and eventually I'm going to have to have a lot of help to get done what needs to be done. Also, the thought of helping me for a while as the bleeding gets worse, worries a couple of people in the family. I don't blame them for being worried. I would be as well. And while they are the best parts of me, they aren't me. They get the benefit of being able to say "I don't think I could do a good job taking care of you as they can in Hospice House". That's a true statement, and they are strong enough to admit openly to me that they can't. That makes them tougher than I am. I'd try until I was standing waist deep in it before I'd admit I couldn't handle the work. My family is much smarter and wiser than I am. The others, well, they want me around as long as I can be around. Same thing I want. But, I've been known to cheat to ensure I get what I want. You know, like adding weights from the gym to my leather jacket so I didn't lose so much weight during radiation therapy, and have to get a feeding tube put in. I cheated, I didn't get the tube, but I lost 65# as well. That took forever to start gaining back. Yep, I got my way, but I paid through the nose to get there. Silly boy.
I still am having the ongoing pain issue in my right jaw. That I fear, will never go away, and in all likely hood get worse. Liz doesn't want to see me in pain. Hell, "I" don't wanna see me in pain either, but it really upsets her. That breaks my heart. So, I wait until I think she is about to be home, and I dose up with morphine. That's doing the ticket so far, but I'm not certain for how long that will last. I'm doing my damnedest to keep everything on as even a keel as is possible, and for now I'm able to control the biggest parts of that. I believe, though, that eventually no one is going to be hide the pain from them. That is also part of my equation as to when I got to Hospice House. The Fam can come visit, but the pressure is off all of us as to whether or not I'm getting what I need to get by. And quite frankly, that's what I'm doing now, I'm getting by. Without a lot of pain or bleeding mess. I like that for now. And I'll work on keeping it that way for as long as I'm able.
I don't have a "Bucket List". I don't believe I need one. Let's review a bit, and maybe you'll all see why I don't think I need one. You know, outside of the fact I do pretty well what I want, 95% of the time.
I've been to Scotland, with the youngest kids and Liz. Great trip, absolutely beautiful. I'd like to do that again, but if I don't, ain't no skin off my ass, I've been there.
I've Toured on a Motorcycle: Yep, more than a few short rides, and with one of my best friends to Bike Week in Daytona Beach Florida. We had more planned, but I've done this, so it's a scratch
I Found One Person That I Want To Spend All My Time With: Married her. No need to expand upon that, I don't think.
Been Inside An Extinct Volcano: In New Mexico, Mt Capulin. Up what's left of the cinder cone, down into the cone where they cemented in a fumerole. Cool, actually
Seen Sunrise and Sunset On Both Coasts: Probably something a lot of people have done. So have I LOL
Helped Pull A Man From A Burning Car: First Weekend in May, 2012. The Guy Wrecked, I stopped Fat Girl off on the shoulder. Crossed 5 lanes of traffic with 2 other men and a cop. I got in the car to steady his head/neck while the other folks pulled him out. The cop mostly watched. Hmmmm
Saw a Mountain Lion Up Close and Personal: Pop and I were have a cup and a smoke in a resort we vacationed at in Colorado. Beautiful morning. Mountain Lion walks between two cabins. Gave us the eye from about 15' away. Got bored and went about it's rat killin. Glad the old man taught me how to be very still. Sometimes those old hunting lessons come in handy
I'm a Highland Games Athlete: Small group of people that do extraordinary things with heavy metal and long timber. I'm blessed they let me play along
Been to Jamaica, Twice: Alone, that's no big deal. What makes it a big deal is coming home and wanting to send the American Poor to Jamaica, so they can see what poor really is. Stop bitching
Now, I know that's not a long list of things, but with it, why in God's name would I need a list of things I wanted to do, when I do them anyway? If you're on your last legs is no fucking time to decide "OH!!! If Only I'd X,Y,and Z'd!" No shit. Too damn late, pin head. Do it while you're young. The Bucket List is something that needs built without thinking about it. You see something you'd like to do, go for it! Use some common sense, though. If one of the things you want to do is run the bulls in Spain, do it before you have a family.
Back when we lived on the ranch, the Old Man had put up a platform in a tree in the back yard. Cool place to sit and hide out. But, I got tired of piss anting snacks and shit up the board ladder one or two at a time. I scrounged a length of soft rope, not very big, but enough to do the job, and an old pulley from the barn. So, I get the pulley hung up where I wanted it, fed the rope through, and started down. Well, I didn't figure on the pulley being so free, and I had the rope stuffed through it too far on one end and the rope beat me to the ground. My temper won. I went back up, restrung the rope, then tied that end to the tree. It ain't comin out this time. Back down I go, with the idea I'd make a stop, in case the rope got away from one of us, it'd stop before what we were lifting hit the ground. Rope slung over one shoulder, I head up, turn to listen to something by little bother was saying, and turned back. Rope is now wrapped around my neck and shoulder.
Why yes, I did slip. Only about 3' off the ground. Rope stopped and then got really tight around me neck and shoulder. My toes would almost touch the ground. I look for the little brother, he's gone. Bear in mind, it wasn't choking me yet, but it was getting tighter all the time. Hmmmm, panic? A bit, yes. I kept a sharp pocket knife with me then. Dug around in my pockets until I found it. Rope getting snugger by the minute. And cut myself loose. I sat on the ground for a while. Went back up the tree, took down the pulley, rolled up the rope and put it in the burn barrel, put the trash in and lit the fire so it would burn every thing. No evidence. Put the pulley back in the barn, next to the block and tackle where I found it.
I finally told Ma and Pop in 2003. They had no clue. Which is how I intended that to go. I didn't lie, actually. I left out important portions of that days dialogue of "What did you do today?" "Well, mom, I damn near hanged myself putting a rope pulley in the tree house". See how that might have not be productive? Where as when she asked that, I said "Oh, played out back (true) saddled Red and checked the cattle (true), combed and fed Red (true), cleaned out the tack room in the calving shed(true)."
See how that works out? No a lie one, just an intentional avoidance of one part of the days fun and games. Next time, maybe, "How the Hell Do I Get the Raccoon Off The Labrador's Face?"
Have fun today, kids. Do something I would. That should leave you plenty of lee way
As some may know, yesterday I ran a late blog that also dealt with my bleeding issue that really kicked into overdrive yesterday. That's part of what brought me to the Critical Mass paragraph that opens todays blab. I've kind of gotten mixed reviews from the family on how long is long enough to stay before I go to Hospice House, where I can get full time help with my bleeding. And they may be able to control it some there, whereas at home, I can't control it very well. I can't control it well at home because we don't have the set up for it, and eventually I'm going to have to have a lot of help to get done what needs to be done. Also, the thought of helping me for a while as the bleeding gets worse, worries a couple of people in the family. I don't blame them for being worried. I would be as well. And while they are the best parts of me, they aren't me. They get the benefit of being able to say "I don't think I could do a good job taking care of you as they can in Hospice House". That's a true statement, and they are strong enough to admit openly to me that they can't. That makes them tougher than I am. I'd try until I was standing waist deep in it before I'd admit I couldn't handle the work. My family is much smarter and wiser than I am. The others, well, they want me around as long as I can be around. Same thing I want. But, I've been known to cheat to ensure I get what I want. You know, like adding weights from the gym to my leather jacket so I didn't lose so much weight during radiation therapy, and have to get a feeding tube put in. I cheated, I didn't get the tube, but I lost 65# as well. That took forever to start gaining back. Yep, I got my way, but I paid through the nose to get there. Silly boy.
I still am having the ongoing pain issue in my right jaw. That I fear, will never go away, and in all likely hood get worse. Liz doesn't want to see me in pain. Hell, "I" don't wanna see me in pain either, but it really upsets her. That breaks my heart. So, I wait until I think she is about to be home, and I dose up with morphine. That's doing the ticket so far, but I'm not certain for how long that will last. I'm doing my damnedest to keep everything on as even a keel as is possible, and for now I'm able to control the biggest parts of that. I believe, though, that eventually no one is going to be hide the pain from them. That is also part of my equation as to when I got to Hospice House. The Fam can come visit, but the pressure is off all of us as to whether or not I'm getting what I need to get by. And quite frankly, that's what I'm doing now, I'm getting by. Without a lot of pain or bleeding mess. I like that for now. And I'll work on keeping it that way for as long as I'm able.
I don't have a "Bucket List". I don't believe I need one. Let's review a bit, and maybe you'll all see why I don't think I need one. You know, outside of the fact I do pretty well what I want, 95% of the time.
I've been to Scotland, with the youngest kids and Liz. Great trip, absolutely beautiful. I'd like to do that again, but if I don't, ain't no skin off my ass, I've been there.
I've Toured on a Motorcycle: Yep, more than a few short rides, and with one of my best friends to Bike Week in Daytona Beach Florida. We had more planned, but I've done this, so it's a scratch
I Found One Person That I Want To Spend All My Time With: Married her. No need to expand upon that, I don't think.
Been Inside An Extinct Volcano: In New Mexico, Mt Capulin. Up what's left of the cinder cone, down into the cone where they cemented in a fumerole. Cool, actually
Seen Sunrise and Sunset On Both Coasts: Probably something a lot of people have done. So have I LOL
Helped Pull A Man From A Burning Car: First Weekend in May, 2012. The Guy Wrecked, I stopped Fat Girl off on the shoulder. Crossed 5 lanes of traffic with 2 other men and a cop. I got in the car to steady his head/neck while the other folks pulled him out. The cop mostly watched. Hmmmm
Saw a Mountain Lion Up Close and Personal: Pop and I were have a cup and a smoke in a resort we vacationed at in Colorado. Beautiful morning. Mountain Lion walks between two cabins. Gave us the eye from about 15' away. Got bored and went about it's rat killin. Glad the old man taught me how to be very still. Sometimes those old hunting lessons come in handy
I'm a Highland Games Athlete: Small group of people that do extraordinary things with heavy metal and long timber. I'm blessed they let me play along
Been to Jamaica, Twice: Alone, that's no big deal. What makes it a big deal is coming home and wanting to send the American Poor to Jamaica, so they can see what poor really is. Stop bitching
Now, I know that's not a long list of things, but with it, why in God's name would I need a list of things I wanted to do, when I do them anyway? If you're on your last legs is no fucking time to decide "OH!!! If Only I'd X,Y,and Z'd!" No shit. Too damn late, pin head. Do it while you're young. The Bucket List is something that needs built without thinking about it. You see something you'd like to do, go for it! Use some common sense, though. If one of the things you want to do is run the bulls in Spain, do it before you have a family.
Back when we lived on the ranch, the Old Man had put up a platform in a tree in the back yard. Cool place to sit and hide out. But, I got tired of piss anting snacks and shit up the board ladder one or two at a time. I scrounged a length of soft rope, not very big, but enough to do the job, and an old pulley from the barn. So, I get the pulley hung up where I wanted it, fed the rope through, and started down. Well, I didn't figure on the pulley being so free, and I had the rope stuffed through it too far on one end and the rope beat me to the ground. My temper won. I went back up, restrung the rope, then tied that end to the tree. It ain't comin out this time. Back down I go, with the idea I'd make a stop, in case the rope got away from one of us, it'd stop before what we were lifting hit the ground. Rope slung over one shoulder, I head up, turn to listen to something by little bother was saying, and turned back. Rope is now wrapped around my neck and shoulder.
Why yes, I did slip. Only about 3' off the ground. Rope stopped and then got really tight around me neck and shoulder. My toes would almost touch the ground. I look for the little brother, he's gone. Bear in mind, it wasn't choking me yet, but it was getting tighter all the time. Hmmmm, panic? A bit, yes. I kept a sharp pocket knife with me then. Dug around in my pockets until I found it. Rope getting snugger by the minute. And cut myself loose. I sat on the ground for a while. Went back up the tree, took down the pulley, rolled up the rope and put it in the burn barrel, put the trash in and lit the fire so it would burn every thing. No evidence. Put the pulley back in the barn, next to the block and tackle where I found it.
I finally told Ma and Pop in 2003. They had no clue. Which is how I intended that to go. I didn't lie, actually. I left out important portions of that days dialogue of "What did you do today?" "Well, mom, I damn near hanged myself putting a rope pulley in the tree house". See how that might have not be productive? Where as when she asked that, I said "Oh, played out back (true) saddled Red and checked the cattle (true), combed and fed Red (true), cleaned out the tack room in the calving shed(true)."
See how that works out? No a lie one, just an intentional avoidance of one part of the days fun and games. Next time, maybe, "How the Hell Do I Get the Raccoon Off The Labrador's Face?"
Have fun today, kids. Do something I would. That should leave you plenty of lee way
Monday, December 16, 2013
It's Late In The Day For My Blog, and It's Gonna Be A Mixed Bag
Yes it is late in the day. I was too tired to get my crap together early this morning, although I was awake at the proper time at least twice, I fell back to sleep. I'd had some terrible swelling in my face, to the point that it hurt. In fact I was afraid I was going to have to have someone take me to lymphedema therapy this morning. But, that's getting a little ahead of the game, so I'll push on from the point of swelling.
I swell in my face and neck because my lymphatic system in my neck and head has been compromised with cancer. It attacks and hangs out in my lymph glands. They are essential for moving fluids away from various and sundry parts of the body. We are, as most of us know, comprised of mostly water. So having a system to move excess fluids out helps maintain a nice balance in many parts of the body. If they don't work properly, as mine don't, then the area that is affected will swell up like a tic. Saturday, I'd had some swelling, nothing major, but I'd missed one Lymphedema Therapy session on Thursday, so I wasn't sweating that so much. About 3 weeks ago my portable suction machine died, and we've been trying to find one ever sense. The Medical Supply people we had been renting that machine from couldn't find their ass with both hands if they had a map and compass. Liz found one, purchased it, and we are patiently awaiting it's arrival, supposed to be last Friday, here it is Monday, and not here yet. Bad luck ordering something around Christmas time, and expecting it to be here on time is near insanity. At any rate, it will certainly be nice to have one that I can take anywhere and suction instead of trying to hack the mucus into a rag. Which, by the way, generally makes me gag. With no soft palate every time I try to work up pressure to spit, it blows the crap right back up into the base of my sinuses. That, girls and boys, sucks dick for skittles. I had to do some of that at the midnight show for "The Hobbit: The Defecation of Smaug". Good movie, I recommend it. I've been having some "above and beyond" regular pain in what's left of my jaw. Since the cancer was found to be hanging out in a goodly chunk of the left side of my lower jaw, why would't it want to find a home in the right side of my jaw? At first I thought it was just from the pec muscle cramping and pulling my right jaw out of place. It has in the past, almost to the point of dislocating my right jaw from it's hinge. I've felt it pop (and having broken enough bones), heard it pop as well. So, when it started aching I paid it little mind, until it just started randomly giving me shooting pain that would drop a normal human being. Okay, yes, it nearly dropped me a couple of times.
Then I began thinking, "Damn, it could be cancer, you dip shit". After speaking with my Hospice nurse and going over some possibilities as to what it is or what it might be, and finally settling on cancer we got me a little bit of Morphine. It's wonderful, especially if I'm looking to take a loooong nap. But yes, it does take care of the continual pain and when I've taken it I'm no longer subject to that shooting pain that will make me wanna pee pee my pants. So yes, I use it like I should and I don't have that kind of silly aching pain any more, I like that. Although I sleep a lot more.
So Sunday was a day of ick, I couldn't do Jack Shit because the swelling in my face and neck was making it hard to breath. I lost nearly all my left to right rotation because of it, and I was having all the fun of running a cheese grater up and down the back of my legs. Yeah, loads of fun. I did have Liz rub me down a bit, and I think that got some of the fluid moving as best as we can. Turns out it worked a bit and I was a lot more comfortable and was able to sleep. Sleep for me is different from a lot of people. I sleep 2-4 hours, then wake up to get my tracy cleared and to suction out my throat a bit. Then it's right back to sleep, because lately I can't seem to get enough sleep, even if I get six hours straight like I get once in a while. Though it's not very often I do relish it when I can grab that. So, that's leading us right up to what happened this morning.
I fell asleep about 2030 last evening (Sunday) and woke up about 0030, coughed to clear the trach. There was a little blood, nothing to worry about, because I've bled off and on it's not big deal. I wait half an hour or so and when nothing else shows up, I'm back in drooler land. Same things at 0300, and 0600 and 0700. I get clear away by taking the Boy to school and heading into Lymphedema Therapy. I'm all shit's and a giggles on the way there. When I get up to the room, I suddenly get that stopped up and can't get it cleared out feeling. That sucks. So, I excuse myself and go to the can to see if I can get this snot wad to move ahead so I can fish it out. What I succeed in doing is getting it out, but it's a wad of bright red bloody snot. While I'm cleaning myself out, I get that nasty blood taste in my mouth again. Just for shits and grins I let this just run out of my mouth and into the sink. Ewwwww!!! It's a string of bright red and really thick blood. Not so much snot I don't think, but heavy duty blood. The good point? It's bright red, I'm not anemia. Bad point, I am not going to put my therapist thru that ordeal. She worries, which is nice in one sense, and worrisome to me in another sense. I don't want her to feel like it's something the therapy caused, which it didn't.
So, now I'm basically bleeding buckets, or it seems that way. I have to keep trying to swallow, so that it will aspirate and I can cough it up. That's a pain in the ass, and not all together kosher, I wouldn't think, on the medical side. But it's how it's got to happen for now. That way I can get home, settle myself in, suction my mouth as it needs it and hopefully cut down on the aspirated material that I've been hacking up for the last 20 or so minutes.
Here's the weird thing. It says something for how the mind, even when you know what it happening, tries to make sense out of something it can't quite grasp. I'm hacking away, and it's heavy with blood, I let it run out of my mouth, and it's heavy with blood. And what is one of the thoughts that's flipping through there? "Damn, that looks a lot like Campbell's Tomato Soup". No shit? Really? Soup is supposed to be fun and nourishing. This is neither, and yet my brain can't come up with anything better than, "Damn, that looks a lot like Campbell's Tomato Soup". MMMMM MMMMM Good bullshit!!
Okay, so now I'm tickled. Soup and suction Mr Smith? Why yes, Jeeves, and thank you. For God sake boy, group your shit would ya? Anyway, I mention I'm bleeding like a stuck hog on FaceBook, that I've text two people with Hospice and no one has answered back. My oldest daughter called for me, after reading the post on FaceBook, and asked them "WTF?". About an hour after it started, it's nearly stopped and the Hospice nurse shows up. I've bled before, it was no big deal, this was though, because of the amount and length of time it ran. The Nurse asked, "You do know that you may start bleeding and it won't stop, don't you? And it might be in everyone's best interest if it starts that way that you go to Hospice House, instead of staying home.". Yep, I understand that. It was one of the things the doctor told me about my last visit to MD Anderson. I did not tell the family. Foolishly thinking that I would have plenty of time to go over that if it came to it. Well fuck, it's come to it and I don't feel like I have enough time to even go take a leak now, let alone go over options with the family. I don't believe they want to watch Dad bleed to death sitting in his recliner, but I'm going to find out this evening for certain.
To summarize: I'll be fucked, this seems to be getting closer to Critical Mass than I would have liked. But that time may indeed be coming around the corner. I promised to keep up the blog as long as I'm able. And I will honor that, for as long as I can.
"Aye God, Woodrow. It's been a hell of a party. ain't it"
It has, and with any luck we can party along a bit longer.
Love all y'all
I swell in my face and neck because my lymphatic system in my neck and head has been compromised with cancer. It attacks and hangs out in my lymph glands. They are essential for moving fluids away from various and sundry parts of the body. We are, as most of us know, comprised of mostly water. So having a system to move excess fluids out helps maintain a nice balance in many parts of the body. If they don't work properly, as mine don't, then the area that is affected will swell up like a tic. Saturday, I'd had some swelling, nothing major, but I'd missed one Lymphedema Therapy session on Thursday, so I wasn't sweating that so much. About 3 weeks ago my portable suction machine died, and we've been trying to find one ever sense. The Medical Supply people we had been renting that machine from couldn't find their ass with both hands if they had a map and compass. Liz found one, purchased it, and we are patiently awaiting it's arrival, supposed to be last Friday, here it is Monday, and not here yet. Bad luck ordering something around Christmas time, and expecting it to be here on time is near insanity. At any rate, it will certainly be nice to have one that I can take anywhere and suction instead of trying to hack the mucus into a rag. Which, by the way, generally makes me gag. With no soft palate every time I try to work up pressure to spit, it blows the crap right back up into the base of my sinuses. That, girls and boys, sucks dick for skittles. I had to do some of that at the midnight show for "The Hobbit: The Defecation of Smaug". Good movie, I recommend it. I've been having some "above and beyond" regular pain in what's left of my jaw. Since the cancer was found to be hanging out in a goodly chunk of the left side of my lower jaw, why would't it want to find a home in the right side of my jaw? At first I thought it was just from the pec muscle cramping and pulling my right jaw out of place. It has in the past, almost to the point of dislocating my right jaw from it's hinge. I've felt it pop (and having broken enough bones), heard it pop as well. So, when it started aching I paid it little mind, until it just started randomly giving me shooting pain that would drop a normal human being. Okay, yes, it nearly dropped me a couple of times.
Then I began thinking, "Damn, it could be cancer, you dip shit". After speaking with my Hospice nurse and going over some possibilities as to what it is or what it might be, and finally settling on cancer we got me a little bit of Morphine. It's wonderful, especially if I'm looking to take a loooong nap. But yes, it does take care of the continual pain and when I've taken it I'm no longer subject to that shooting pain that will make me wanna pee pee my pants. So yes, I use it like I should and I don't have that kind of silly aching pain any more, I like that. Although I sleep a lot more.
So Sunday was a day of ick, I couldn't do Jack Shit because the swelling in my face and neck was making it hard to breath. I lost nearly all my left to right rotation because of it, and I was having all the fun of running a cheese grater up and down the back of my legs. Yeah, loads of fun. I did have Liz rub me down a bit, and I think that got some of the fluid moving as best as we can. Turns out it worked a bit and I was a lot more comfortable and was able to sleep. Sleep for me is different from a lot of people. I sleep 2-4 hours, then wake up to get my tracy cleared and to suction out my throat a bit. Then it's right back to sleep, because lately I can't seem to get enough sleep, even if I get six hours straight like I get once in a while. Though it's not very often I do relish it when I can grab that. So, that's leading us right up to what happened this morning.
I fell asleep about 2030 last evening (Sunday) and woke up about 0030, coughed to clear the trach. There was a little blood, nothing to worry about, because I've bled off and on it's not big deal. I wait half an hour or so and when nothing else shows up, I'm back in drooler land. Same things at 0300, and 0600 and 0700. I get clear away by taking the Boy to school and heading into Lymphedema Therapy. I'm all shit's and a giggles on the way there. When I get up to the room, I suddenly get that stopped up and can't get it cleared out feeling. That sucks. So, I excuse myself and go to the can to see if I can get this snot wad to move ahead so I can fish it out. What I succeed in doing is getting it out, but it's a wad of bright red bloody snot. While I'm cleaning myself out, I get that nasty blood taste in my mouth again. Just for shits and grins I let this just run out of my mouth and into the sink. Ewwwww!!! It's a string of bright red and really thick blood. Not so much snot I don't think, but heavy duty blood. The good point? It's bright red, I'm not anemia. Bad point, I am not going to put my therapist thru that ordeal. She worries, which is nice in one sense, and worrisome to me in another sense. I don't want her to feel like it's something the therapy caused, which it didn't.
So, now I'm basically bleeding buckets, or it seems that way. I have to keep trying to swallow, so that it will aspirate and I can cough it up. That's a pain in the ass, and not all together kosher, I wouldn't think, on the medical side. But it's how it's got to happen for now. That way I can get home, settle myself in, suction my mouth as it needs it and hopefully cut down on the aspirated material that I've been hacking up for the last 20 or so minutes.
Here's the weird thing. It says something for how the mind, even when you know what it happening, tries to make sense out of something it can't quite grasp. I'm hacking away, and it's heavy with blood, I let it run out of my mouth, and it's heavy with blood. And what is one of the thoughts that's flipping through there? "Damn, that looks a lot like Campbell's Tomato Soup". No shit? Really? Soup is supposed to be fun and nourishing. This is neither, and yet my brain can't come up with anything better than, "Damn, that looks a lot like Campbell's Tomato Soup". MMMMM MMMMM Good bullshit!!
Okay, so now I'm tickled. Soup and suction Mr Smith? Why yes, Jeeves, and thank you. For God sake boy, group your shit would ya? Anyway, I mention I'm bleeding like a stuck hog on FaceBook, that I've text two people with Hospice and no one has answered back. My oldest daughter called for me, after reading the post on FaceBook, and asked them "WTF?". About an hour after it started, it's nearly stopped and the Hospice nurse shows up. I've bled before, it was no big deal, this was though, because of the amount and length of time it ran. The Nurse asked, "You do know that you may start bleeding and it won't stop, don't you? And it might be in everyone's best interest if it starts that way that you go to Hospice House, instead of staying home.". Yep, I understand that. It was one of the things the doctor told me about my last visit to MD Anderson. I did not tell the family. Foolishly thinking that I would have plenty of time to go over that if it came to it. Well fuck, it's come to it and I don't feel like I have enough time to even go take a leak now, let alone go over options with the family. I don't believe they want to watch Dad bleed to death sitting in his recliner, but I'm going to find out this evening for certain.
To summarize: I'll be fucked, this seems to be getting closer to Critical Mass than I would have liked. But that time may indeed be coming around the corner. I promised to keep up the blog as long as I'm able. And I will honor that, for as long as I can.
"Aye God, Woodrow. It's been a hell of a party. ain't it"
It has, and with any luck we can party along a bit longer.
Love all y'all
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