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!!!