I'm sitting here using my gravity bag to feed. The tubing on the ones that everyone can find is so small it takes 45 minutes to an hour to feed with. I believe these were more for being used with a pump. At least with the pump you can adjust the time it takes to get 16 oz of formula down. I realize that I don't have a lot to do, nor can I do a whole lot anymore, but 4 hours out of my day just really pisses me off. So I kind of split it. I used the bag when I'm not in a rush, or am reading. Otherwise I use a syringe. The problem with that is how fast I can run it in. Too fast and I'll throw up. Not a pleasant thing to do in the least. On the other hand, with the syringe there isn't any real "too slow". I've gotten better at it. Takes me 10 to 15 minutes to put the formula in with a syringe. That's "push, push, pause". Hmmmm that sounded like something from a Lamaze class.
I managed to mess up my sleep patterns again. Friday I'd had a long day of bleeding. Not a lot, just a steady drip. Saliva and mucus all had a nice pink tint. So, apparently that bugs me on a sub conscious level. I tried to go to sleep, nothing. I'd doze off, 15 minutes later, wide awake. I finally gave up that fight and just played my video game. Finally, after a shower and all the meds and one feeding in, I fell asleep. That was 0400. I made it until 0830, fed, watched a little boob tube, fell asleep. Out about an hour. watched some football with my wife and oldest daughter. Fed, fell asleep. Out for 2 hours. See where this is heading? Yep, slept a big chunk of the day away, but still got extra tired about 2200 last night. Dozed off, 15 minutes later, wide awake. This time though, I only stayed up until 0200, and woke up at 0700. I can live with that, I'm getting closer to getting the sleep patterns back to normal that way.
Today is the final day of the 2013 CAF Airsho. I'm planning on going. I've only missed a few, and that was because we all kind of thought "We've been every year for the last 10, let's just skip it". That was true, to an extent, but this is the last time I'll get to see all the WW2 fighters, bombers, and recon planes running and flying. I just love the sound of a huge radial engine running.They are wicked. Jets are great and all. Fast, sneaky, (if you're not expecting them they really can fly in faster than the sound they make) and modern. All kinds of great avionics and computers to help fly at speed and accurately target enemy aircraft. The guys that fought with the planes in WW2 had none of that. Compass and essential instruments is all the had. To do aerial combat then, you had to really fly. It was up close and personal. Amazing the things those guys did. During a period when if you got into a war, you fought to win, not like today when we fight to draw. And win they did. We aren't speaking German or Japanese. The one thing that bugs me over all of WW2, was the lack of open tribunals for Japanese war crimes. They committed their share, including wiping out an entire city in China. They killed everyone, including babies. They beheaded POW's on Chichi Jima, the Baton Death March. They should have had the same open and ultimately deadly, for most, war crimes trials as we did in Germany.
Maybe it was a guilt thing for Roosevelt putting Japanese Americans in concentration camps, when their only crime was being Japanese. The most decorated unit in WW2 was the Japanese American unit that fought in Europe. Or maybe it's from dropping two atomic weapons. I've got an Uncle that thinks that was the right thing to do. He was awaiting orders to move into Japan with the Marines strike force. He's glad he didn't have to do that.
I'm hoping we can talk the grandson and kids into going as well. It'd be a fairly nice family outing. When my youngest was just little, I'd put him on my shoulders and we'd go stand at the taxi way and watch the warbirds taxi for the spot to take off. And it was a neat way to go hear the engines crank up. The whine of the mag as it's charging, the starter popping and the old Pratt pop, then boom, then settle into a nice hard sounding idle. They fire so hard you can feel it in your chest. Damned amazing engine the Pratt and Whitney Radial. I like the sound of a V12 Allison, or Rolls Royce Merlin as well. The German engine in an ME 109, that baby just howls! It was inverted and fuel injected, and had a 22 millimeter cannon that sat right beneath the pilot, the barrel comes out of the prop nose cone. The 109 could just turn it's nose straight into a dive, the American and others had to roll over into a dive so they wouldn't empty the carb. Little stuff like that I pick up.
So, what goes on with me now. I am realizing I bleed a little bit every day. Not the once a week, that became a couple of times, that became a couple of times with a longer duration. Nope, now it's a little bit, off and on all day. I really see it in the morning when I do my "Get this done, so you can have fun" routine. So that's there now. Back in July my surgeon told me I'd be needing more sleep as the cancer progressed. I scoffed and said "Yeah, right. I never need more than 4-6 hours tops.". I hate when doctors are correct. I do require more sleep. And forcing myself to stay awake is getting harder to do all the time. I'll fight it today, since I want to go see the Airsho. Hmmm, maybe I could play the Terminal Velocity card and get a ride in one of the bombers. A B17 would be my choice. Naw, I don't even play that card at home. Okay, okay, I don't play it very often at home. Sheesh. Also, it's a touch harder to control the pain. I'm afraid I'm going to have to up my pain patch again. I'm stubborn, so I'll wait until it doesn't do much at all, then up it. I'd make a terrible drug addict. I don't like how it makes me feel. Like I'm not in control of myself. Which is wrong, I am, but I don't feel that way on the pain meds. It's harder to get around. My legs are giving up on me. They are getting weaker. Even when I was lifting (before it got painful) I noticed my legs were not agreeing to get stronger, they seemed to prefer being the desk while I type in the recliner. I'm losing upper body strength as well. Even using the rubber band things, I'm not as strong. I'm assuming that my body is taking from one to fight the other. None of this is unexpected on my part, but sometimes it startles me to see it happening. I'm not afraid, I'm a bit pissed off about it, but that's a waste of energy. There's no use in being angry about it, because the cancer doesn't care if I'm angry or not. Well, with the exception that it makes me tired. I think the cancer thrives on your being tired and angry. Being that way helps fill its dance card. I feel better when I'm laughing as well. I honestly believe the cancer dislikes when we are having a good time. When I'm laughing, I have more energy, and it stays with me longer. When I laugh, so does the family, and that's always a good thing. They worry too much about me. This is going to happen whether they worry or not. That being said, we need to laugh more.
I'm watching a thing on the news about what is average for men these days. Age 30-39. BMI 29, waist 38, height 5' 9". Now I've got to laugh. At 230, my heaviest, I had a BMI of 16. My waste never got over 36. My height was 5' 10", but chemo shaved a full inch off that. All that and the Fed listed me as obese. The Fed says I should weigh 165 lb. I say of course, if I'm some scrawny pencil necked geek in Washington who wishes he could live my life and have to buy close that have an XL on the label instead of Medium. Shit, even with all the weight and muscle mass I've lost since December of last year, I still wear an XL shirt. On the "Don't Do What I Do" front, I smoked. some days more than others. But I could still get three miles in 24-25 minutes, when I felt like running. My pulse was 62-65, BP was 120/70. And I was over 50. All the bad things I did. I probably shouldn't have ever smoked, but alas I did. With this cancer, there are a lot of possibilities that could have brought it on. Smoking, drinking, HPV, any other those. Or none at all. It may, and I think is, be in my genetic make up. Not everyone that smokes or drinks gets cancer. All those do is increase your risk exponentially. Thinking people know that inhaling smoke into your lungs can't be good for you. And it's not, truly. But smokes aren't the "be all, end all" in cancer, they are a portion of the entire picture. We all know what is said about smoking, and we are all over 21. Do as you please, but look at the outcome down the road as well.
Orders for the day: Be more self confident. Walk the earth like you own the damn thing. Make today yours, and screw anyone that wants to try and get a piece of it from you. There's nothing about you that is so bad that you can't overcome it. It's a matter of deciding how one wants to live.
I'm so self confident it borders on arrogance and being an asshole. That's a thin like to walk. No one likes an arrogant prick.
I'm also so confident in myself, I can admit when I'm wrong. No hem hawing around, if I'm wrong I own that as well.
So endeth the lesson.
Go be yourself, you're the only one like you out of 6Billion plus. Make sure everyone knows that.
Hugs, and bang on the ear
Sunday, October 13, 2013
Friday, October 11, 2013
I skipped a day, neener
So I skipped yesterday. It was a frustration day for me. Starting with texting Hospice to get some drugs refilled I needed. I'm setting staring at the bottle of meds in liquid, and being told that they don't come that way, never have, never will. I was nice and didn't say "Look, numb nuts, I'm holding the bottle in my hand, it was delivered last Saturday. So what magic fucking fairy brought that too me? Keebler fucking Elves?". I felt like that, but said instead "Fine, I'm too tired to argue, just send the tabs that I have to crush, that plainly say "do not crush" on the label." Passive aggressive worked. I hate to have to do it like that, but it seems in this day and age people offering a service always seem to know more than their clients.
Later the Hospice social worker came by. I related my frustration. In two hours the assistant director of the Hospice was on my couch. And the Social Worker just left. I hate to have to be a damn grouch and mean old man to get someone's attention. After all, for shit sake, they offer a service. And it's no different than any other service, except that dying people are kind of hindered for palliative care. So, they will either work to please me, as a service should do, or I'll raise hell all over the damn place until they are so humiliated by their lack of action and help, that they'll wonder why in the name of all things Holy they didn't just do the easy stuff to begin with. I'm appalled by the lack of civility in all areas of service these days. From wait staff in restaurants, to oil field services. "The customer is always right" has been replaced with "Oh fuck him, he can wait". A piss poor way to run a service business. I only require a few things from my services: If something changes, call me. Be polite and don't argue, if I'm wrong I'll be the first to admit it, but you better damn well be ready and have all your T's crossed and I's dotted before you make the attempt to bullshit this old man. Because I do check, and I don't ask for specifics unless I'm looking right at it. That's what was expected of me, even within my own company, and it's not unreasonable to expect other's to be the same way.
The Hospice Chaplain came by yesterday as well. He's a nice fella, but I believe a bit naive. Unless I just can't read him like I do other people. No, he's naive. Anyway, we are visiting along and he looks at me and says "Gee, Mr Smith, you've really had some changes in the last month haven't you?".
Well duh. I'm going downhill!! It cracked me up, actually. I mean, damn, if that's a pep talk, I'd hate to see your depressing interpretation. I laughed on the inside and said yes, I'm headed downhill. I know he meant well, but it still came out, to my ears at least, as a bit less than inspiring. I believe it's an anomaly with people who are dying, that others can't find the words they want and in doing their best, sometimes stumble. That's okay as well. In that case it's the idea that counts. Lots of people tell me I look great. They are trying to cheer me up, I'm sure. I know I don't look great. I'm getting baggy eyes, and I feel run down a lot of the time. In fact, today my throat has been bleeding a bit extra, and that makes me tired and a bit cranky. I try not to let that show, though, since the people I see only want the best for me. They should see the best of what I have that particular day.
Here's how I look at that. I'm dying, fucking slowly, but still. It's getting to where though I still have more good days than bad, the bad days are starting to gather a little steam. One day it'll be 50/50 good and bad days. Then the balance will begin to swing the other way. For people I see and meet, you deserve to see the best of everything I have that particular day. You show your concern, so I can at least be the best that I can be for you and myself. I know I don't look good, but in all honesty it makes me feel better when people say "You look great today". It's a morale boost. It will put a little spring in my step that may not have been there before. And for a while, it often makes me go a bit longer without being so tired so quickly. If folks are willing to put forth that effort, the least I can do is try and match it. That's the courteous thing to do, and proper. I'm not always the most proper person you'll run into, but if you put out some effort, by God so will I. If you follow this, you've invested a piece of yourself in my life. My honor demands that I give you the same respect and investment in return.
You all are giving up something to this blog and myself that's far more important than any amount of money. You're giving me some time. And that, girls and boys, is something we can never get back. I owe it to you to give as much back to you as I can. Unless I'm a complete asshole, I'll give back what I can without complaint. Because you honor me with part of your life. That's a heady situation, and deserves a part of me as well. Thank you
So I set here, typing away, with that coppery blood taste on the back of my tongue. I've been out twice for a couple hours each this morning. It makes it a bit worse simply because I exert a bit extra getting around. And that's something I will not trade away. It's a wonderful morning out. The extra icky shit that goes with getting out is well worth the trouble. It's still a big world out, even though I'm pretty limited in what I can do, you'd be amazed at how nice it is to smell some fresh air, get a little sun, and sit to watch people go about their rat killin. I also find myself getting tired more often and with less effort expended. These are the side effects of a growing cancer. It's feeding itself off what I put in to keep my engine primed and running. It seems he's a relentless bastard, this cancer. He doesn't take rest time, he keeps on doing what's in his nature. That includes wearing me out. I'm not certain where else he's gotten his little shit hooks into, but my suspicion is he's starting to hang out in lymph nodes. I've got a spot on my right jaw that's hard as a rock, and unless I'm mistaken has grown a bit. It feels longer along my jaw that it once did. It could be scar tissue, since I know they grabbed a couple of them during surgery, and I'm not sure how many hang out along your jawline. I will have to check that out.
I can feel some rough areas inside my mouth and cheeks as well. Different that it was in July, or even last month. My tongue also feels a bit fatter. I don't know if that's from the half that was messed up and gone atrophied from surgery, or if that's part of the cancer. It just feels bigger and harder to control.
No, I don't mean it's running off at the head on it's own, but rather it's hard to keep in n my mouth.
The overall malaise (college word of the week) I'm sure is cancer related.
One day, we can talk about dying. Well, we are all dying, I'm just speeding my journey up. Let me work on that a bit, and we'll see what comes up.
Airshow weekend. I believe I'll go, even if I can't stay long. Jets are all fast and loud and cool.
A 2500 horsepower Radial engine though.....man, that is the coolest sound. And the aircraft are all WW2 fighter and bombers. It's my last chance to see them all, and something I wish a lot of you could see with me. Much like me, the old planes are a dying breed. They came from a time when the United States fought to win, not fighting to appease or almost win. They are inspiring. The pilots that flew them in combat didn't have computers for firing solutions from 30 miles away. They had to be up close and personal. They were real warriors in the sky, just as the guys are the ground were warriors. They did what they had to do to survive, and look after their wing man, and foxhole mate.
Today y'all are supposed to go out and find something out you didn't know previously. Learn something new, even if it's just something tiny. And practice keeping your mind sharp. It'll make you live longer
Hugs and shit
Later the Hospice social worker came by. I related my frustration. In two hours the assistant director of the Hospice was on my couch. And the Social Worker just left. I hate to have to be a damn grouch and mean old man to get someone's attention. After all, for shit sake, they offer a service. And it's no different than any other service, except that dying people are kind of hindered for palliative care. So, they will either work to please me, as a service should do, or I'll raise hell all over the damn place until they are so humiliated by their lack of action and help, that they'll wonder why in the name of all things Holy they didn't just do the easy stuff to begin with. I'm appalled by the lack of civility in all areas of service these days. From wait staff in restaurants, to oil field services. "The customer is always right" has been replaced with "Oh fuck him, he can wait". A piss poor way to run a service business. I only require a few things from my services: If something changes, call me. Be polite and don't argue, if I'm wrong I'll be the first to admit it, but you better damn well be ready and have all your T's crossed and I's dotted before you make the attempt to bullshit this old man. Because I do check, and I don't ask for specifics unless I'm looking right at it. That's what was expected of me, even within my own company, and it's not unreasonable to expect other's to be the same way.
The Hospice Chaplain came by yesterday as well. He's a nice fella, but I believe a bit naive. Unless I just can't read him like I do other people. No, he's naive. Anyway, we are visiting along and he looks at me and says "Gee, Mr Smith, you've really had some changes in the last month haven't you?".
Well duh. I'm going downhill!! It cracked me up, actually. I mean, damn, if that's a pep talk, I'd hate to see your depressing interpretation. I laughed on the inside and said yes, I'm headed downhill. I know he meant well, but it still came out, to my ears at least, as a bit less than inspiring. I believe it's an anomaly with people who are dying, that others can't find the words they want and in doing their best, sometimes stumble. That's okay as well. In that case it's the idea that counts. Lots of people tell me I look great. They are trying to cheer me up, I'm sure. I know I don't look great. I'm getting baggy eyes, and I feel run down a lot of the time. In fact, today my throat has been bleeding a bit extra, and that makes me tired and a bit cranky. I try not to let that show, though, since the people I see only want the best for me. They should see the best of what I have that particular day.
Here's how I look at that. I'm dying, fucking slowly, but still. It's getting to where though I still have more good days than bad, the bad days are starting to gather a little steam. One day it'll be 50/50 good and bad days. Then the balance will begin to swing the other way. For people I see and meet, you deserve to see the best of everything I have that particular day. You show your concern, so I can at least be the best that I can be for you and myself. I know I don't look good, but in all honesty it makes me feel better when people say "You look great today". It's a morale boost. It will put a little spring in my step that may not have been there before. And for a while, it often makes me go a bit longer without being so tired so quickly. If folks are willing to put forth that effort, the least I can do is try and match it. That's the courteous thing to do, and proper. I'm not always the most proper person you'll run into, but if you put out some effort, by God so will I. If you follow this, you've invested a piece of yourself in my life. My honor demands that I give you the same respect and investment in return.
You all are giving up something to this blog and myself that's far more important than any amount of money. You're giving me some time. And that, girls and boys, is something we can never get back. I owe it to you to give as much back to you as I can. Unless I'm a complete asshole, I'll give back what I can without complaint. Because you honor me with part of your life. That's a heady situation, and deserves a part of me as well. Thank you
So I set here, typing away, with that coppery blood taste on the back of my tongue. I've been out twice for a couple hours each this morning. It makes it a bit worse simply because I exert a bit extra getting around. And that's something I will not trade away. It's a wonderful morning out. The extra icky shit that goes with getting out is well worth the trouble. It's still a big world out, even though I'm pretty limited in what I can do, you'd be amazed at how nice it is to smell some fresh air, get a little sun, and sit to watch people go about their rat killin. I also find myself getting tired more often and with less effort expended. These are the side effects of a growing cancer. It's feeding itself off what I put in to keep my engine primed and running. It seems he's a relentless bastard, this cancer. He doesn't take rest time, he keeps on doing what's in his nature. That includes wearing me out. I'm not certain where else he's gotten his little shit hooks into, but my suspicion is he's starting to hang out in lymph nodes. I've got a spot on my right jaw that's hard as a rock, and unless I'm mistaken has grown a bit. It feels longer along my jaw that it once did. It could be scar tissue, since I know they grabbed a couple of them during surgery, and I'm not sure how many hang out along your jawline. I will have to check that out.
I can feel some rough areas inside my mouth and cheeks as well. Different that it was in July, or even last month. My tongue also feels a bit fatter. I don't know if that's from the half that was messed up and gone atrophied from surgery, or if that's part of the cancer. It just feels bigger and harder to control.
No, I don't mean it's running off at the head on it's own, but rather it's hard to keep in n my mouth.
The overall malaise (college word of the week) I'm sure is cancer related.
One day, we can talk about dying. Well, we are all dying, I'm just speeding my journey up. Let me work on that a bit, and we'll see what comes up.
Airshow weekend. I believe I'll go, even if I can't stay long. Jets are all fast and loud and cool.
A 2500 horsepower Radial engine though.....man, that is the coolest sound. And the aircraft are all WW2 fighter and bombers. It's my last chance to see them all, and something I wish a lot of you could see with me. Much like me, the old planes are a dying breed. They came from a time when the United States fought to win, not fighting to appease or almost win. They are inspiring. The pilots that flew them in combat didn't have computers for firing solutions from 30 miles away. They had to be up close and personal. They were real warriors in the sky, just as the guys are the ground were warriors. They did what they had to do to survive, and look after their wing man, and foxhole mate.
Today y'all are supposed to go out and find something out you didn't know previously. Learn something new, even if it's just something tiny. And practice keeping your mind sharp. It'll make you live longer
Hugs and shit
Wednesday, October 9, 2013
Sleep and new meds, they are both nice.
So, I finally get about 5 hours of sleep, only awake twice and only for a few minutes each time. That's nice. Unfortunately I'm going to have to crash on the recliner. I might not have woken up at all if I'd not been in bed. I can't keep the angle right to keep from choking just a little, and coughing more than just a little. I'd rather be in bed with my wife. I like her a lot, and she's like a little pastry oven these days, where as I get chilly. The world has truly turned upside down. We used to be 180 degrees different. I slept above the covers because I melted (unless Liz was PG, then no one was more of an oven) and Liz froze. I liked those days. Now I can barely stay warm enough. Weird.
As per my rant yesterday, the change in drugs works. I'm not nearly as snotty, and I'm coughing about 75% less. This is a good thing. It also means I'm in a lot less pain, which is even better. I'd been telling them I had to crush my Prilosec to take it since January. That's not supposed to happen, but it was the only way to get it into the PEG tube so I could ingest it. Finally, I get liquid. Gosh, it's nice to to vurp a little, and not feel like I'd swallowed a tablespoon of Drano. One of the physical problems is a weak and 95% functioning esophageal sphincter (i said "sphincter", heh heheheheh heh). It doesn't close as tightly as it should. So instead of everything staying in my stomach where it belongs, I get little dabs of things in my throat and mouth. I'm honestly hoping that as the cancer moves along it closes that damn problem. It's nasty as hell to burp a little, and carry some fricking formula into the back of my throat where I can't swallow it, or suction it, but can taste that rancid shit. I can tell I've overloaded, not because I feel full, but because I can taste what ever it is I put in the tube. Sometimes that's not a bad thing. Other times, like a good vurp or too much formula too fast, it's enough to make a feller vomit. Which is also no fun. It's worse than testing a cheese grater on the back of your thigh. The joys of Terminal Velocity are many, yes indeed.
I've been able to write the blog, and get some small stuff done, like make it to therapy. But as far as concentration goes, I can't read a damn book. A video game? No problem. I start to read a book though, and in a couple of minutes I'm asleep. I've got two I really want to read, and I'm going to give it a shot again today, but this is something new and odd for me. Normally I can read through a decently written, and well plotted novel in a day. Say from, 0900 to 2100. That's eating and a nap thrown in. That's not the case now, it seems. And this is something new in the last two weeks. I reread the last Lee Child novel one afternoon, just for kicks, about two weeks ago. I can't even get a good start on the last two that were given me. That's somewhat problematic for me, on a personal note. I'm not certain if it's burn out from reading so many books this spring and summer. Although that's never been a problem for me. I've read as many as six novels in a week, but have done that before as well. So I don't believe it's that. I don't think it's physical, because I'm too clear headed. I don't get lost or distracted too easily, so I don't think it's that. And one is an author I've always enjoyed, so I'm not sure what the deal is. I'll sort that out soon enough, I'm certain.
Things I miss. Hmmmm, quite a long list, so let's prioritize it a bit. My oldest son. We got to the ages where we are buddies. Not just father and son, but friends as well. I liked when I was able to be that with my dad. It's something else, too. We never stop being parents, but it's a different thing when the kids start leading their own lives with goals and ambitions. I'm proud of him, as I am all my kids. We haven't really text each other for a couple of weeks. He's in a hectic place right now, looking at a promotion and the decisions that that will involve. I've got all the faith that he'll make a decision based on what is best for him. He's sharp, and driven. I'm very proud.
I miss seeing the Flint Hills in Kansas. My parents lived there and my dad's family was from there for years. His grandfather Smith was raised along the Walnut river with Osage Indians when he was small. Not many can say that. They are pretty hills with great Bluestem grass that's wonderful for cattle to summer upon, terrible for them to winter upon, unless it's cut into meadow hay. When it goes dormant it loses all it's nutrients. Unlike buffalo grass that carries some, Bluestem is just filler. Cattle can starve on it even if it's waist high. The creeks, streams, springs, hills and rivers are all pretty. It's the place of my childhood summers and holiday visits with the grandparents. I will miss seeing them.
The country around Hays, Gorham, and Russell Ks, and points east. All pretty country. Lot's of history in there as well. It's where I grew up as a kid, including a year and a half in Great Bend, Ks. I'll miss seeing that part of the country. Thanks to Douglas Kressly for throwing a good Highland Game in Lucas Kansas. I'm glad I got to be at one of them. It got me back up into that part of the world one more time. I'd forgotten how much I liked it there. It's a shame I can't make the living in Kansas that I do in Texas, but that's just how things work. I'm glad we made the move out here. It's been one of the best decisions I've ever made. Doesn't mean I still won't miss my home state.
There are tons of things I'm going to miss. And I'll try and hit on some of those as time goes along. Mostly because they bring back memories, which is a good thing. But also with the hope that some of it rubs off on other folks, and they go check on things they'd been missing as well, before it gets too late. I don't sweat the stuff I didn't get to see. Those things would have been nice, but they are wants, not "I did that" things. The things I've done, those are what matters most. Wish in one hand, shit it the other to see which fills up faster. That's something I've heard all my life. Wishing is fine, but making it happen is where it's at, not just hoping it happens. I've tried to do that. Every day should have something in it that is new. And for me it always has, and still does. That's as it should be, correct?
Late last week and even some into this week, I was beginning to doubt I'd make it to Fort Worth for my friend's Highland Games on the 26th of October, and at least part of the 27th of October. I doubted it for almost 5 hours. Then I resolved to go. I don't care how hard it is on me, I'll be there. Not only because I want to see some friends that may show up at the games, but also for myself. It's a proving ground. It's also going to be my last fairly long trip. Woe is me to the day that a 700 plus mile round trip is a long trip, but that's how it stands now. I was reluctant to go in part because of my own vanity. I may have to use the walker to get around. My legs are going and I may need the help. My vanity was appalled I'd even think about doing that. My vanity is an asshole. I choose to ignore my vanity and do what I want to, without input from that simpleton. If I have to use it, that's just how it's going to be. If I don't, well that's a win I wasn't expecting and I'll revel in that little victory. I'm not particularly brave, I'm stubborn. I don't like to lose, especially to myself, so I'll be going. Just to spite myself
Book of Rock, Chapter 50, verse 10: "It pays to know someone seedier than you are. You never know when the people they know will come in handy is a bad situation". I've seen that to be true, and it has been for me. Keep that in mind.
Love and all that shit.
Later
As per my rant yesterday, the change in drugs works. I'm not nearly as snotty, and I'm coughing about 75% less. This is a good thing. It also means I'm in a lot less pain, which is even better. I'd been telling them I had to crush my Prilosec to take it since January. That's not supposed to happen, but it was the only way to get it into the PEG tube so I could ingest it. Finally, I get liquid. Gosh, it's nice to to vurp a little, and not feel like I'd swallowed a tablespoon of Drano. One of the physical problems is a weak and 95% functioning esophageal sphincter (i said "sphincter", heh heheheheh heh). It doesn't close as tightly as it should. So instead of everything staying in my stomach where it belongs, I get little dabs of things in my throat and mouth. I'm honestly hoping that as the cancer moves along it closes that damn problem. It's nasty as hell to burp a little, and carry some fricking formula into the back of my throat where I can't swallow it, or suction it, but can taste that rancid shit. I can tell I've overloaded, not because I feel full, but because I can taste what ever it is I put in the tube. Sometimes that's not a bad thing. Other times, like a good vurp or too much formula too fast, it's enough to make a feller vomit. Which is also no fun. It's worse than testing a cheese grater on the back of your thigh. The joys of Terminal Velocity are many, yes indeed.
I've been able to write the blog, and get some small stuff done, like make it to therapy. But as far as concentration goes, I can't read a damn book. A video game? No problem. I start to read a book though, and in a couple of minutes I'm asleep. I've got two I really want to read, and I'm going to give it a shot again today, but this is something new and odd for me. Normally I can read through a decently written, and well plotted novel in a day. Say from, 0900 to 2100. That's eating and a nap thrown in. That's not the case now, it seems. And this is something new in the last two weeks. I reread the last Lee Child novel one afternoon, just for kicks, about two weeks ago. I can't even get a good start on the last two that were given me. That's somewhat problematic for me, on a personal note. I'm not certain if it's burn out from reading so many books this spring and summer. Although that's never been a problem for me. I've read as many as six novels in a week, but have done that before as well. So I don't believe it's that. I don't think it's physical, because I'm too clear headed. I don't get lost or distracted too easily, so I don't think it's that. And one is an author I've always enjoyed, so I'm not sure what the deal is. I'll sort that out soon enough, I'm certain.
Things I miss. Hmmmm, quite a long list, so let's prioritize it a bit. My oldest son. We got to the ages where we are buddies. Not just father and son, but friends as well. I liked when I was able to be that with my dad. It's something else, too. We never stop being parents, but it's a different thing when the kids start leading their own lives with goals and ambitions. I'm proud of him, as I am all my kids. We haven't really text each other for a couple of weeks. He's in a hectic place right now, looking at a promotion and the decisions that that will involve. I've got all the faith that he'll make a decision based on what is best for him. He's sharp, and driven. I'm very proud.
I miss seeing the Flint Hills in Kansas. My parents lived there and my dad's family was from there for years. His grandfather Smith was raised along the Walnut river with Osage Indians when he was small. Not many can say that. They are pretty hills with great Bluestem grass that's wonderful for cattle to summer upon, terrible for them to winter upon, unless it's cut into meadow hay. When it goes dormant it loses all it's nutrients. Unlike buffalo grass that carries some, Bluestem is just filler. Cattle can starve on it even if it's waist high. The creeks, streams, springs, hills and rivers are all pretty. It's the place of my childhood summers and holiday visits with the grandparents. I will miss seeing them.
The country around Hays, Gorham, and Russell Ks, and points east. All pretty country. Lot's of history in there as well. It's where I grew up as a kid, including a year and a half in Great Bend, Ks. I'll miss seeing that part of the country. Thanks to Douglas Kressly for throwing a good Highland Game in Lucas Kansas. I'm glad I got to be at one of them. It got me back up into that part of the world one more time. I'd forgotten how much I liked it there. It's a shame I can't make the living in Kansas that I do in Texas, but that's just how things work. I'm glad we made the move out here. It's been one of the best decisions I've ever made. Doesn't mean I still won't miss my home state.
There are tons of things I'm going to miss. And I'll try and hit on some of those as time goes along. Mostly because they bring back memories, which is a good thing. But also with the hope that some of it rubs off on other folks, and they go check on things they'd been missing as well, before it gets too late. I don't sweat the stuff I didn't get to see. Those things would have been nice, but they are wants, not "I did that" things. The things I've done, those are what matters most. Wish in one hand, shit it the other to see which fills up faster. That's something I've heard all my life. Wishing is fine, but making it happen is where it's at, not just hoping it happens. I've tried to do that. Every day should have something in it that is new. And for me it always has, and still does. That's as it should be, correct?
Late last week and even some into this week, I was beginning to doubt I'd make it to Fort Worth for my friend's Highland Games on the 26th of October, and at least part of the 27th of October. I doubted it for almost 5 hours. Then I resolved to go. I don't care how hard it is on me, I'll be there. Not only because I want to see some friends that may show up at the games, but also for myself. It's a proving ground. It's also going to be my last fairly long trip. Woe is me to the day that a 700 plus mile round trip is a long trip, but that's how it stands now. I was reluctant to go in part because of my own vanity. I may have to use the walker to get around. My legs are going and I may need the help. My vanity was appalled I'd even think about doing that. My vanity is an asshole. I choose to ignore my vanity and do what I want to, without input from that simpleton. If I have to use it, that's just how it's going to be. If I don't, well that's a win I wasn't expecting and I'll revel in that little victory. I'm not particularly brave, I'm stubborn. I don't like to lose, especially to myself, so I'll be going. Just to spite myself
Book of Rock, Chapter 50, verse 10: "It pays to know someone seedier than you are. You never know when the people they know will come in handy is a bad situation". I've seen that to be true, and it has been for me. Keep that in mind.
Love and all that shit.
Later
Tuesday, October 8, 2013
Some sleep, not all at once, but a bit more
I skipped yesterday because I was so damned tired from not sleeping at all that I couldn't see to piss straight sitting down. I couldn't even express to the family why I didn't sleep in clear terms, so I'm sure I couldn't have written anything understandable. Not that I do that with any consistency anyway, but yesterday would have been worse. I know I'm not going to get a complete night sleep anymore, because prior to the last two or three weeks, I could swallow a bit. Now I don't believe I'm able to swallow anything at all. Therefore when I sleep, I'm going to aspirate more and have to cough it to clear my trach and continue to breath. Breathing is a good thing. Coughing until you puke, not such a good thing. And finally, after two and a half months of telling the same problem over and over to 4 different Hospice nurses, one finally fucking listened and I got something that's meant to be taken through a PEG tube for my acid control, and something to maybe help control my mucus problem. Sheesh. I'm sure they deal with people that aren't as functional, or that pay attention to what is going on with their own body as I, they've told me as much openly, but for shit sake if that's the case LISTEN!
I say, "I've got a lot of mucus that I can't swallow and is hard to suction up from the back of my throat. That makes me cough, gag, and puke. What I do aspirate, I can expel very easily through my tracy tube, so getting rid of it that way isn't the problem, it's the amount.". I get back as an answer, "Are you putting saline down your trach to help keep it clean?" I feel like yelling. "WHAT THE FUCK DID I JUST SAY ABOUT MY TRACH!!!! FUCKING LISTEN!!", but I don't because that's not productive, and it makes my throat hurt, and I get so steamed at that shit that I wanna smack people. What I do say is, "If you'd listen closely, clearing my trach isn't the problem, it's has to do with the amount, not the thickness or coughing it out after I aspirate it". Well, finally one nurse listened, and convinced the PA I knew what the hell I was talking about. Different drugs, again, and they seem to be working. Time will tell.
All the symptoms compound into a series of problems. My doc at MD Anderson and I went over how things would progress. He did generalities knowing that each person and their physical response is going to be unique, with some things as a constant. So I have a good idea what's going on, what's coming and what to expect. I told them repeatedly, "You give me the mechanics of how this is likely to go, and I can adjust myself to fit the circumstance. Mentally and physically. That is if I can get decent medical support to help with some of the symptoms". That's been the case, up until lately. I know that there will be a time when the drugs and all will only be a partial help, but that's better than no help at all, and I can work around that. I adjust and adapt pretty well for an old dude who does shit his way whether the doctors like it or not. I'm going to get worse, no doubt about it, and at some point I may even need to have supplementary O2 to get by on a daily basis. Right now my pulse is low to mid 70's, not my best but not bad, and my BP is 120-130 over 65-75. I can live with that. It's what's going on everywhere else that's a bit startling.
We went to Kansas, and I know I'm getting weaker, I can feel that. As a mediocre athlete, I learned to listen to what my body was telling me strength wise, and I'm not happy with what it tells me now. I know I'm losing upper body strength. I had to lay off the gym, it was causing more pain than gain, and I don't have enough time left to figure out why it's doing that. And coming home to double dose the break out pain med three times a week was being foolish. So, I expected not to be able to carry all I used to cart around on my back and in my arms. I tried, I sorta succeeded, but I was deep into the pain killer again...ooops. What I didn't expect was to actually feel my legs going. Walking wasn't a problem endurance wise, it was a problem with getting winded. This time, I had all the wind, but I could feel my legs getting worn out. WTF is this shit? Well, it's true. They are going. And they are going faster than I thought they would, or even expected them to go. I used to (God I hate doing that "used to" shit) walk people to ground. That ain't happening anymore. That startled me a lot. I'm still taken aback about how fast the sticks started going. I'll have to adapt faster. No big deal, but the walker is starting to look like it's going to be helpful again, and that in itself pisses me off.
I bled a lot this past week. I was emptying my suction canister more times than I normally would, and it was always pink. Some of that was from the acid reflux irritating the cancer in my throat and mouth. Other of it was from coughing so much that it irritated the cancer in my mouth and throat. And yet some more of it was just because I have cancer in my mouth and throat. And it's getting worse. For kicks I was feeling around the inside of my mouth yesterday. I've got more rough spots and 1-10 around Houston. Strange bumps and skin that wasn't there even after my surgeries. I'm assuming that's the cancer doing it's business. It's moving along, I'm draggin ass right behind it. Such goes life, yes?
I'm doing something I don't like to do, I'm putting something off. I've got to talk to the younger kids, 19 and 15, about all the bleeding out that is to come. It's supposed to be a lot more than is happening now, and this is more than was going on two weeks ago, and with more frequency. So it has to be done. I woke up yesterday with a little blood dried on my chin where it had leaked out as I slept. I was glad to be awake and find that before a kid did. So yes, I've got to get this done. I don't want them to panic unless dad panics. Dad never panics, because panic kills. I can explain to them that it's one thing to be excited, and another to panic. Panic kills your ability to think clearly. Being excited may slow that down, but it doesn't kill that ability. They know I'm going to die, we talked about that a lot, and we talked about how I'm going to get worse as time goes along. Now I guess I need to explain to them some of the specifics that are going to start coming along. Pain, bleeding, and probably shortness of temper since I can't control what's happening to me. Temper I can work on, the others are going to happen whether I like it or not.
I promised when I started this blog that I'd be honest with almost everything that I'm going to go through as it comes along. I feel like I'm doing that, at least I hope so. I promised that so we could all learn a bit about what's going on, and hopefully in the future, if it happens to people you know and love, you'll have a place to start from, and have the knowledge to be a help and not just wring your hands with worry. After all, you'll have already lived it with me, right? This entire things sucks dick for skittles. I'd not wish it on a soul, not am I going to shrink away from the challenges it puts up at me. The biggest right now is not giving into the mental issue of just "fuck it, I'm tired, I'm not going to fight it anymore". Believe me that's crossed my mind for a nanosecond. So has "why me?". Those things defeat before you even get a chance to stand up if you let them grow and thrive. I can't, I just don't know how to let them do that. The body loses this fight eventually. I've lost fights before, but I never had to fight the same asshole twice. Winning against me in a fight always cost more than it was worth. I intend for the essence of this to feel the same way when my body is done. The cost of winning will be it's own death as well. And in the end, that makes me and my friends the winners.
I don't say this often, and I should. This is important to hear, and I'll bring it up more often than I do now.
I have the greatest family on the planet. They've let me be me. My wife isn't just my partner, she is the part of me that makes me the whole man I strive to be. My anchor, and my rock. My kids are the better parts of me, each one has some part of me in them, and they make it better. That's all I could ever ask for.
My friends. I don't know what I've done to deserve so many people working so hard in my corner for me. All of you make this so much easier to do. I'm not so sure that if I didn't have the group of people, family and friends, that I'd try as hard as I do to stick around. You all make this entire thing worth while. The struggle isn't such a struggle with you all pulling for me.
Take a minute and pat yourselves on the back, you've earned it. Deserve it. And I love all of you for it. Thanks for making this part of my life more bearable. You're all part of the reason I live such a charmed and wonderful life. Thanks
I say, "I've got a lot of mucus that I can't swallow and is hard to suction up from the back of my throat. That makes me cough, gag, and puke. What I do aspirate, I can expel very easily through my tracy tube, so getting rid of it that way isn't the problem, it's the amount.". I get back as an answer, "Are you putting saline down your trach to help keep it clean?" I feel like yelling. "WHAT THE FUCK DID I JUST SAY ABOUT MY TRACH!!!! FUCKING LISTEN!!", but I don't because that's not productive, and it makes my throat hurt, and I get so steamed at that shit that I wanna smack people. What I do say is, "If you'd listen closely, clearing my trach isn't the problem, it's has to do with the amount, not the thickness or coughing it out after I aspirate it". Well, finally one nurse listened, and convinced the PA I knew what the hell I was talking about. Different drugs, again, and they seem to be working. Time will tell.
All the symptoms compound into a series of problems. My doc at MD Anderson and I went over how things would progress. He did generalities knowing that each person and their physical response is going to be unique, with some things as a constant. So I have a good idea what's going on, what's coming and what to expect. I told them repeatedly, "You give me the mechanics of how this is likely to go, and I can adjust myself to fit the circumstance. Mentally and physically. That is if I can get decent medical support to help with some of the symptoms". That's been the case, up until lately. I know that there will be a time when the drugs and all will only be a partial help, but that's better than no help at all, and I can work around that. I adjust and adapt pretty well for an old dude who does shit his way whether the doctors like it or not. I'm going to get worse, no doubt about it, and at some point I may even need to have supplementary O2 to get by on a daily basis. Right now my pulse is low to mid 70's, not my best but not bad, and my BP is 120-130 over 65-75. I can live with that. It's what's going on everywhere else that's a bit startling.
We went to Kansas, and I know I'm getting weaker, I can feel that. As a mediocre athlete, I learned to listen to what my body was telling me strength wise, and I'm not happy with what it tells me now. I know I'm losing upper body strength. I had to lay off the gym, it was causing more pain than gain, and I don't have enough time left to figure out why it's doing that. And coming home to double dose the break out pain med three times a week was being foolish. So, I expected not to be able to carry all I used to cart around on my back and in my arms. I tried, I sorta succeeded, but I was deep into the pain killer again...ooops. What I didn't expect was to actually feel my legs going. Walking wasn't a problem endurance wise, it was a problem with getting winded. This time, I had all the wind, but I could feel my legs getting worn out. WTF is this shit? Well, it's true. They are going. And they are going faster than I thought they would, or even expected them to go. I used to (God I hate doing that "used to" shit) walk people to ground. That ain't happening anymore. That startled me a lot. I'm still taken aback about how fast the sticks started going. I'll have to adapt faster. No big deal, but the walker is starting to look like it's going to be helpful again, and that in itself pisses me off.
I bled a lot this past week. I was emptying my suction canister more times than I normally would, and it was always pink. Some of that was from the acid reflux irritating the cancer in my throat and mouth. Other of it was from coughing so much that it irritated the cancer in my mouth and throat. And yet some more of it was just because I have cancer in my mouth and throat. And it's getting worse. For kicks I was feeling around the inside of my mouth yesterday. I've got more rough spots and 1-10 around Houston. Strange bumps and skin that wasn't there even after my surgeries. I'm assuming that's the cancer doing it's business. It's moving along, I'm draggin ass right behind it. Such goes life, yes?
I'm doing something I don't like to do, I'm putting something off. I've got to talk to the younger kids, 19 and 15, about all the bleeding out that is to come. It's supposed to be a lot more than is happening now, and this is more than was going on two weeks ago, and with more frequency. So it has to be done. I woke up yesterday with a little blood dried on my chin where it had leaked out as I slept. I was glad to be awake and find that before a kid did. So yes, I've got to get this done. I don't want them to panic unless dad panics. Dad never panics, because panic kills. I can explain to them that it's one thing to be excited, and another to panic. Panic kills your ability to think clearly. Being excited may slow that down, but it doesn't kill that ability. They know I'm going to die, we talked about that a lot, and we talked about how I'm going to get worse as time goes along. Now I guess I need to explain to them some of the specifics that are going to start coming along. Pain, bleeding, and probably shortness of temper since I can't control what's happening to me. Temper I can work on, the others are going to happen whether I like it or not.
I promised when I started this blog that I'd be honest with almost everything that I'm going to go through as it comes along. I feel like I'm doing that, at least I hope so. I promised that so we could all learn a bit about what's going on, and hopefully in the future, if it happens to people you know and love, you'll have a place to start from, and have the knowledge to be a help and not just wring your hands with worry. After all, you'll have already lived it with me, right? This entire things sucks dick for skittles. I'd not wish it on a soul, not am I going to shrink away from the challenges it puts up at me. The biggest right now is not giving into the mental issue of just "fuck it, I'm tired, I'm not going to fight it anymore". Believe me that's crossed my mind for a nanosecond. So has "why me?". Those things defeat before you even get a chance to stand up if you let them grow and thrive. I can't, I just don't know how to let them do that. The body loses this fight eventually. I've lost fights before, but I never had to fight the same asshole twice. Winning against me in a fight always cost more than it was worth. I intend for the essence of this to feel the same way when my body is done. The cost of winning will be it's own death as well. And in the end, that makes me and my friends the winners.
I don't say this often, and I should. This is important to hear, and I'll bring it up more often than I do now.
I have the greatest family on the planet. They've let me be me. My wife isn't just my partner, she is the part of me that makes me the whole man I strive to be. My anchor, and my rock. My kids are the better parts of me, each one has some part of me in them, and they make it better. That's all I could ever ask for.
My friends. I don't know what I've done to deserve so many people working so hard in my corner for me. All of you make this so much easier to do. I'm not so sure that if I didn't have the group of people, family and friends, that I'd try as hard as I do to stick around. You all make this entire thing worth while. The struggle isn't such a struggle with you all pulling for me.
Take a minute and pat yourselves on the back, you've earned it. Deserve it. And I love all of you for it. Thanks for making this part of my life more bearable. You're all part of the reason I live such a charmed and wonderful life. Thanks
Sunday, October 6, 2013
Another Sleepless in the Recliner Night
Before I get started, I need to clear something up. When I said I needed a break, it wasn't from the blog or anything like that at all. I need a break from the shit that's piling up on me croaking. I don't need an infected PEG tube stoma, I don't need the sinus headache, I don't need the over production of mucus that makes me hack, gag, and vomit. That's what I don't need, and what I DO need a break from, not the blog. Sorry I wasn't clear
Anyway, here I am awake since 2:30, putting Atropine drops on my tongue to dry my mouth out, so I'm not having to suction every two minutes, and wrestling a sinus head ache. I fool around for an hour and half so that things are settled in and I can take my drugs with less chance of throwing them back up in the next fifteen minutes. I really am uncomfortable now. Beyond the normal ache and pain that comes from a stage four cancer that's making it's way through my body. The new stuff on top of the usual suspects isn't being very nice and I'm not impressed with it at all. I'm hoping in a few days it starts to slack off a bit. In retrospect, the only thing that seemed to have jumped out right away was the stoma infection. It makes the entire area around my tube tender and is nasty. If it doesn't clear up pretty quickly, I may have to cancel my lymphedema therapy for next week. I hate to miss that, because it goes a long way to helping control my neck and back pain. As many places that hold fluid in my system now, I believe the cancer is weaseling it's way around my lymph nodes. It was partial to them both times, I see no reason why it wouldn't come back for an encore in the same general areas. I do, however, get naps of one to two hours at a pop during the day. Right now I'm wide awake, where as yesterday I was dragging ass and falling asleep as I typed the blog. All told, with falling asleep and waking up, it took almost three hours to get that little dab down yesterday. Which is kind of funny. I wonder if Lee Child does that when he writes "Jack Reacher" novels? I'm guessing, no.
There are things that run through my mind since I don't have much to do anymore. I mean, truly, my day is filled with a maybe walk, depending on how my legs feel at that time, looking for something to read (my friend Daric Smith sent me two novels that I've got to get to reading) when I don't have the screaming sinus head ache that is, and watching the boob tube. I watch my oldest do her job at our converted from dining room table to desk. I'm not sure she notices I'm watching. She can be so quiet, reading schedules, e-mail, and planning the flights for fighters she's helping. And concentrates so hard. I'm sure she did that at her office, but with other people to speak to I don't think she's probably that quiet. It makes me smile. Yesterday she mentioned she missed dressing up to go to work, and as usual I was flippant about that, I shoulda kept my mouth shut. It's something she's missing to be here with me, and I'm flattered about that. She gave up part of her life to come help me end mine. That's pretty heavy duty shit right there. I give her a little jazz once in a while. Like slipping up behind her (yes I wait until she's reading, not actually typing) and giving her a little startle. I do that so I can be close to her. Not because I'm such a needy person, but because each time it's a little something I can carry with me.
It's the same way with the other two. Although at fifteen I can understand why the Boy doesn't want dad messing with him. It's a guy thing, and I get that. There are a lot of things I'm going to miss. Each one of the kids has their own scent. Not a nasty, dirty, "I need a bath" scent. But a unique smell that tells me it's them. I think that's a throw back to the days when we humans lived and hunted in packs. A way to distinguish ours from everyone else's. I get the feeling I want to just have them set beside me, and lay their heads on my shoulder like they did when they were little. When all of them were babies, my favorite thing after they were fed was to put them on my chest, lie on the floor and both of us take a nap. I never had one roll off, and we both got some wonderful sleep. Babies metabolism is so fast, it was like having a little electric blanket on my chest. We'd both be toasty warm. When they got sort of an upset stomach or got fussy. I'd put on a button down shirt that was way too big (I had four, one for each kid), take their top off, put us both tummy to tummy, and button the shirt up a little bit. Warm stomachs on both of us and they seemed to do better. My youngest daughter, she didn't like when her mom went back to work. She'd cry from the minute Liz left the house, until she walked in the front door. I don't mean whimper sob sob. I mean a full blown, bawl until your eardrums shatter cry. If she was asleep when Liz left, no problem. If she saw her leave, Katey bar the door. It drove me nuts. That only lasted about 2 months and it wasn't every time. Because most of the time Liz would be gone before the baby woke up, but those few times...wowzer.
One day I took her up to the hospital to take Liz some lunch. One of her co-workers was a bit older than myself. I walked in and in a loud voice "Lisa Bean!!! I know that this is our baby, but for God's sake you've got to take some responsibility for her too!!! I can't do this all the time without help from her mother!". Lisa Bean turned forty shades of red. You could have heard a pin drop. I think it was so unexpected that even though everyone knew better, there was that moment of "Holy shit! I had no idea!" that went buzzing around the room. It was priceless. I don't need a whole lot of frills to make my day, so having a toddler set next to me in our oversized recliner, both of our feet up, watching Animaniacs and eating a bowl of popcorn stands out as one of my best days. Or just watching them go about their daily rat killin, and looking like they have a job that just has to be finished. I'd like to know what's going on inside that noggin, just for a few minutes when they are like that. Quiet kids make me nervous. If you don't hear anything when they are playing, they are into something they shouldn't. Wonderful things, babies. And I'm so glad mine are all raised that I don't have to change another poo poo diaper. Right now one of my favorite things is having my grandson grab a book and set with me on the recliner and reading to me. That boy has got the softest hair.
And once again I fall asleep writing this! What a hoot. Geez Louise I must be tired and sick both. I was about to finish up and go feed. Now I've been out for almost 2 hours and my feeding routine is off. Oh well, I'm not gonna die from it, I'll just have to adjust so I'm not feeding so late in the day. At least the drugs are all in, thank goodness.
Okay, since obviously I must not feel well or I wouldn't just pass out like that. I'm gonna start my day.......again.
Go forth and multiple...no, that's been done. How about just do what feels right.
Love ya
Anyway, here I am awake since 2:30, putting Atropine drops on my tongue to dry my mouth out, so I'm not having to suction every two minutes, and wrestling a sinus head ache. I fool around for an hour and half so that things are settled in and I can take my drugs with less chance of throwing them back up in the next fifteen minutes. I really am uncomfortable now. Beyond the normal ache and pain that comes from a stage four cancer that's making it's way through my body. The new stuff on top of the usual suspects isn't being very nice and I'm not impressed with it at all. I'm hoping in a few days it starts to slack off a bit. In retrospect, the only thing that seemed to have jumped out right away was the stoma infection. It makes the entire area around my tube tender and is nasty. If it doesn't clear up pretty quickly, I may have to cancel my lymphedema therapy for next week. I hate to miss that, because it goes a long way to helping control my neck and back pain. As many places that hold fluid in my system now, I believe the cancer is weaseling it's way around my lymph nodes. It was partial to them both times, I see no reason why it wouldn't come back for an encore in the same general areas. I do, however, get naps of one to two hours at a pop during the day. Right now I'm wide awake, where as yesterday I was dragging ass and falling asleep as I typed the blog. All told, with falling asleep and waking up, it took almost three hours to get that little dab down yesterday. Which is kind of funny. I wonder if Lee Child does that when he writes "Jack Reacher" novels? I'm guessing, no.
There are things that run through my mind since I don't have much to do anymore. I mean, truly, my day is filled with a maybe walk, depending on how my legs feel at that time, looking for something to read (my friend Daric Smith sent me two novels that I've got to get to reading) when I don't have the screaming sinus head ache that is, and watching the boob tube. I watch my oldest do her job at our converted from dining room table to desk. I'm not sure she notices I'm watching. She can be so quiet, reading schedules, e-mail, and planning the flights for fighters she's helping. And concentrates so hard. I'm sure she did that at her office, but with other people to speak to I don't think she's probably that quiet. It makes me smile. Yesterday she mentioned she missed dressing up to go to work, and as usual I was flippant about that, I shoulda kept my mouth shut. It's something she's missing to be here with me, and I'm flattered about that. She gave up part of her life to come help me end mine. That's pretty heavy duty shit right there. I give her a little jazz once in a while. Like slipping up behind her (yes I wait until she's reading, not actually typing) and giving her a little startle. I do that so I can be close to her. Not because I'm such a needy person, but because each time it's a little something I can carry with me.
It's the same way with the other two. Although at fifteen I can understand why the Boy doesn't want dad messing with him. It's a guy thing, and I get that. There are a lot of things I'm going to miss. Each one of the kids has their own scent. Not a nasty, dirty, "I need a bath" scent. But a unique smell that tells me it's them. I think that's a throw back to the days when we humans lived and hunted in packs. A way to distinguish ours from everyone else's. I get the feeling I want to just have them set beside me, and lay their heads on my shoulder like they did when they were little. When all of them were babies, my favorite thing after they were fed was to put them on my chest, lie on the floor and both of us take a nap. I never had one roll off, and we both got some wonderful sleep. Babies metabolism is so fast, it was like having a little electric blanket on my chest. We'd both be toasty warm. When they got sort of an upset stomach or got fussy. I'd put on a button down shirt that was way too big (I had four, one for each kid), take their top off, put us both tummy to tummy, and button the shirt up a little bit. Warm stomachs on both of us and they seemed to do better. My youngest daughter, she didn't like when her mom went back to work. She'd cry from the minute Liz left the house, until she walked in the front door. I don't mean whimper sob sob. I mean a full blown, bawl until your eardrums shatter cry. If she was asleep when Liz left, no problem. If she saw her leave, Katey bar the door. It drove me nuts. That only lasted about 2 months and it wasn't every time. Because most of the time Liz would be gone before the baby woke up, but those few times...wowzer.
One day I took her up to the hospital to take Liz some lunch. One of her co-workers was a bit older than myself. I walked in and in a loud voice "Lisa Bean!!! I know that this is our baby, but for God's sake you've got to take some responsibility for her too!!! I can't do this all the time without help from her mother!". Lisa Bean turned forty shades of red. You could have heard a pin drop. I think it was so unexpected that even though everyone knew better, there was that moment of "Holy shit! I had no idea!" that went buzzing around the room. It was priceless. I don't need a whole lot of frills to make my day, so having a toddler set next to me in our oversized recliner, both of our feet up, watching Animaniacs and eating a bowl of popcorn stands out as one of my best days. Or just watching them go about their daily rat killin, and looking like they have a job that just has to be finished. I'd like to know what's going on inside that noggin, just for a few minutes when they are like that. Quiet kids make me nervous. If you don't hear anything when they are playing, they are into something they shouldn't. Wonderful things, babies. And I'm so glad mine are all raised that I don't have to change another poo poo diaper. Right now one of my favorite things is having my grandson grab a book and set with me on the recliner and reading to me. That boy has got the softest hair.
And once again I fall asleep writing this! What a hoot. Geez Louise I must be tired and sick both. I was about to finish up and go feed. Now I've been out for almost 2 hours and my feeding routine is off. Oh well, I'm not gonna die from it, I'll just have to adjust so I'm not feeding so late in the day. At least the drugs are all in, thank goodness.
Okay, since obviously I must not feel well or I wouldn't just pass out like that. I'm gonna start my day.......again.
Go forth and multiple...no, that's been done. How about just do what feels right.
Love ya
Saturday, October 5, 2013
How about just a little break? What do ya say?
I could use a little break from the action. You know, dying from cancer seems to be a difficult enough without adding a sore throat, an over abundance of mucus, and vomiting. I must be sick, I'm whining about being sick. I can't even enough, in the in the PEG tube, to have my favorite "I'm Sick" meals. I mean, geez, didn't they think that someone, somewhere, will be some poor sick fella that would, canned Chicken Noodle soup. But not without pulverizing it. I've tried it puree'd enough to get in the tube. I even dipped my finger in it so I could get a little taste. It tasted like crap. I have a malfunctioning esophageal sphincter. It won't close all the way, so if I feed fast enough, I alway get a taste of what ever it is I'm ingesting. It tastes like crap, the puree'd soup does. Now, in all honesty, bean with bacon soup tastes pretty decent. But not so with chicken noodle soup. How odd is that?
So, anyway, I got a decent night's sleep Thursday night and was hoping for the same on Friday. I even fell asleep at about the same time. Only Friday I awoke at 2230 only to find I'm coughing my head off, and feel like I'm drowning. I really hate that part. I'm afraid of practically nothing, drowning is at the top of a very short list. And that feeling is absolutely miserable. Besides being a bit scary. I hate being scared. I was awake about 20 minutes and knowing full well that if I didn't stop coughing soon I was going to vomit. BINGO! I started vomiting too. That's so much non fun. I don't have a soft palate, so every time I vomit, no matter how hard I try, it goes up my sinuses and out my nose. It burns, it makes my eyes water, and it's damn hard to get blown out of my nose. The simple things that I used to do for
myself are no longer that simple or easy. I also despise that little piece of cancer pie. Anyway, I cough for about another hour or so, all the time trying to control the vomiting while so I can get some meds into me. That finally happens and I get some pain killer and some cough syrup in. I doze off about 0130 and sleep until 0430. Not much, but better than no sleep at all. I also have dozed off three times trying to get this written. The last time let me sleep pretty decently until around 0745. Two and a half hours of sleep seems to have been better not.
So, while I'm coughing, I'm trying to find something positive about the entire time. It turns out that I didn't need that to be positive. And I found it. I am coughing and I'm angry and hurt. Hell's fire I'm alive, right? Can't beat that with a stick. Sure, it'd be nice if I was sleeping and not awake until my time came. Silly, that I'm whining about something I can't do anything about. Well at least nothing I can do that I can see me doing. This is almost as much mental as physical. Well, all but the coughing. I can see that stoping soon. That's a nice, huge positive. So yeah, it's been a shitty night. I see folks on FB wishing I didn't have to got through this, and that's they'd take it from me. Thank you so much, and I'd not do that to my worst enemy. This isn't fun, but I own it in its entirety at this point and I'm just selfish enough to not let it go now. Ask me again in a couple of months and I might just hand the whole thing off. I'm finally getting really sleepy too. I'm not sure how long I can hang in with the blog. What a riot!! I'm dozing off during the episode of TV that happens to be on at the moment. Not that Sponge Bod Squarepants is scary, but he can be if you've got enough drugs in your system! I've got a lump of something at the back of my throat I can't suction out. It's yuck
This is where I've got to stop for the day. I'm afraid I'll doze off and drool into the keyboard. Then I'd have to do this with some PC notebook, instead of my beloved Mac. I've dozed enough that I've lost almost another hour this morning. Not that I don't need the sleep, I do. So I'm gonna jump it with both feet, as soon as I finish this
Be good to each other today. Sometimes that's harder than one might think.
Love all y'all
So, anyway, I got a decent night's sleep Thursday night and was hoping for the same on Friday. I even fell asleep at about the same time. Only Friday I awoke at 2230 only to find I'm coughing my head off, and feel like I'm drowning. I really hate that part. I'm afraid of practically nothing, drowning is at the top of a very short list. And that feeling is absolutely miserable. Besides being a bit scary. I hate being scared. I was awake about 20 minutes and knowing full well that if I didn't stop coughing soon I was going to vomit. BINGO! I started vomiting too. That's so much non fun. I don't have a soft palate, so every time I vomit, no matter how hard I try, it goes up my sinuses and out my nose. It burns, it makes my eyes water, and it's damn hard to get blown out of my nose. The simple things that I used to do for
myself are no longer that simple or easy. I also despise that little piece of cancer pie. Anyway, I cough for about another hour or so, all the time trying to control the vomiting while so I can get some meds into me. That finally happens and I get some pain killer and some cough syrup in. I doze off about 0130 and sleep until 0430. Not much, but better than no sleep at all. I also have dozed off three times trying to get this written. The last time let me sleep pretty decently until around 0745. Two and a half hours of sleep seems to have been better not.
So, while I'm coughing, I'm trying to find something positive about the entire time. It turns out that I didn't need that to be positive. And I found it. I am coughing and I'm angry and hurt. Hell's fire I'm alive, right? Can't beat that with a stick. Sure, it'd be nice if I was sleeping and not awake until my time came. Silly, that I'm whining about something I can't do anything about. Well at least nothing I can do that I can see me doing. This is almost as much mental as physical. Well, all but the coughing. I can see that stoping soon. That's a nice, huge positive. So yeah, it's been a shitty night. I see folks on FB wishing I didn't have to got through this, and that's they'd take it from me. Thank you so much, and I'd not do that to my worst enemy. This isn't fun, but I own it in its entirety at this point and I'm just selfish enough to not let it go now. Ask me again in a couple of months and I might just hand the whole thing off. I'm finally getting really sleepy too. I'm not sure how long I can hang in with the blog. What a riot!! I'm dozing off during the episode of TV that happens to be on at the moment. Not that Sponge Bod Squarepants is scary, but he can be if you've got enough drugs in your system! I've got a lump of something at the back of my throat I can't suction out. It's yuck
This is where I've got to stop for the day. I'm afraid I'll doze off and drool into the keyboard. Then I'd have to do this with some PC notebook, instead of my beloved Mac. I've dozed enough that I've lost almost another hour this morning. Not that I don't need the sleep, I do. So I'm gonna jump it with both feet, as soon as I finish this
Be good to each other today. Sometimes that's harder than one might think.
Love all y'all
Friday, October 4, 2013
Rough week
Before we get started I gotta get a pet peeve off my chest. I hear over and over ad nauseum what a patriotic city Midland Texas is. It's almost said often enough that it makes me woozy. So, last night was the Homecoming Parade for Lee High School. My son plays in the band. He volunteered to play tuba in marching band since they didn't have enough. Anyway, the Colors are carried by the school ROTC kids. I get up out of my chair and put my hat over my heart. My family all has their hands over their hearts as one should when the colors pass. I look around and within 200 people, only my family is saluting the flag. The rest of the lazy dick bumps are just yapping away, and won't even stand up for the flag to pass. Not one more word do I want to hear about Midland being such a patriotic city. You're too lazy to stand for the flag, at least admit it doesn't mean that much to you anymore and just let it slide. But don't keep blowing your own horn on what a wonderfully patriotic city this is. Sheesh
So, it's been a rough week. There is something in the air that's got me so messed up I can hardly breath. And that's spooky when 90% of your air intake comes from a hole in your neck. With the parts I have missing and my inability to swallow, the extra mucus from the allergy stuff is making it uncomfortable to say the least. At the most it gags me and makes me vomit. That's always a part of the day I'd rather pass upon, thank you. I'm also still playing catch up from the trip to Kansas last weekend. I didn't realize how much was being taken out of me at the time. And didn't fully appreciate that until Monday afternoon, when I was so tired and sore I could barely stand up long enough to get started doing my regular duties. I went on a pain med schedule Tuesday, and that's held everything to a dull roar and I can live with that for certain. I don't like being on the pain meds. I mean shit, I'm tired enough the way it is. Throw some pain meds in there and I'm liable to pass the hell out watching you talk to me. I'm afraid the family is going to draw on my face, like frat boys do the guys that pass out on the couch. I'm not really, but that would be funny. I get these damn face cramps again. Yesterday the pec in my mouth (sounds like the title to a really bad porn movie) cramped up so hard it had the other side of my jaw popping in ant out. That'll strain your milk for ya, believe me. What ever is floating around in the air, trees and shrubs, what ever it is makes it hard for me to sleep an entire night through. I relax when I sleep, so I aspirate more of my own secretions. Which leaves me open to a lot of up and down at night. So I've only been getting a couple of hours of sleep in a stretch. However, this morning was a bit different. I fell asleep before 2130, woke up at 2230, then didn't wake up again until 0410. That was nice, it gave me a chance at some real restful sleep. And I felt better when I woke up. Well, except for the 20 minutes of hacking up everything but a lung and some toenails. No uber weird dreams either. That's nice. I've had some lulu nightmares recently. You know, the cold sweat and panting kind of nightmares. Those are no fun at all. I also need to supplement my Prilosec with something else too, the acid burps are just fricking awful,
On the positive side, because there always is a positive side to things, I got to see my son march in the last parade I'll get to go to. He does great and I really enjoy watching him march. And the band on the whole is damned good, so that's a plus. I found that I can live within my limits, and I know that those are going to change as time goes along. I have to figure out how to give myself a break when that happens. I'd love to go the airshow next weekend. But I don't know if I can stand to be out all day like I once did. It would be nice to see it one more time. I love to sounds of the old Pratt and Whitney engines. I saw lots of country that I'd often taken for granted, but see with a renewed vision now. The country north of Amarillo along the Canadian River breaks is beautiful. I've always known it was, but this trip I was looking at it differently. That makes for a lot sights that aren't quite so ugly as people think. I grew up on the plains. So flat or treeless is no big deal to me at all. The plains have a beauty all their own. They don't suffer fools very well either. The plains are where I learned to carry more than enough water. Where I learned that if it's fall, you better have winter clothes stored in the trunk of your car. In the summer it can be up to 110, in the winter the coldest I remember was 15 below zero, not counting wind chill. The guys here in West Texas grumble about the weather and wind here, and they don't see enough of either to really make much difference. So I laugh. And they get pissed, and I laugh some more. Where I grew up takes a certain mental toughness that I think people over look, simply because it's how they deal with the Big Empty. I think that's been a part of how I look at dealing with Terminal Velocity. Yeah, it's happening, so deal with it. Don't wussy out. I kinda like that.
Travel is kind of a hassle now. Nearly as bad as packing up for a short weekend trip with a baby. Nearly, but not quite. But, it's also important to me that I make a couple of trips. I know I'll be exhausted, and beat down, and sore, but I have things to do for me. I need to let some folks know how much they've meant to me in my life. What a positive thing they've done for me, and that's helped make me a better person all around. And I'd like to see the country side again. Were that I could do so on my bike, but alas, I think I've fooled around too long now and I'll never make that kind of trip on her again. I don't have the stamina for it, or the legs to hold her up after being in the saddle for 3 or more hours at a stretch. So, the car it is. And I've gotten so spoiled now, that it's gotta be the wife's car, because it's the most comfortable. The little Audi is great to drive, and I made round trips in it to Houston early on in my treatment. But man, it's a roadster, so it's small and rides rough. As it should, it's a sports car so it has sport suspension. It's gonna ride rough, but that's also it's appeal. So, sport sedan it is. I'll be comfy, and can let Liz drive some and I can drive some. Not a bad gig all the way around.
There are somethings coming up that are going to be both difficult for me, and overly pleasant at the same time. I can't divulge those yet, but I'll let people know as soon after the events as is possible. They should be fun.
What I need to make, instead of a bucket list, is a Last Time list. So I can go over that and see where it made it's impression on me and why I remember it like I do. And then my kids will have something they've been involved with written down so they have that as a keepsake from dad. I don't have a lot of material things. But that kind of stuff I will have in abundance.
Okay, time to take the Boy to school. Have a great weekend, and remember. Make today happen for you, not just to be a place to kill time waiting for something to happen
So, it's been a rough week. There is something in the air that's got me so messed up I can hardly breath. And that's spooky when 90% of your air intake comes from a hole in your neck. With the parts I have missing and my inability to swallow, the extra mucus from the allergy stuff is making it uncomfortable to say the least. At the most it gags me and makes me vomit. That's always a part of the day I'd rather pass upon, thank you. I'm also still playing catch up from the trip to Kansas last weekend. I didn't realize how much was being taken out of me at the time. And didn't fully appreciate that until Monday afternoon, when I was so tired and sore I could barely stand up long enough to get started doing my regular duties. I went on a pain med schedule Tuesday, and that's held everything to a dull roar and I can live with that for certain. I don't like being on the pain meds. I mean shit, I'm tired enough the way it is. Throw some pain meds in there and I'm liable to pass the hell out watching you talk to me. I'm afraid the family is going to draw on my face, like frat boys do the guys that pass out on the couch. I'm not really, but that would be funny. I get these damn face cramps again. Yesterday the pec in my mouth (sounds like the title to a really bad porn movie) cramped up so hard it had the other side of my jaw popping in ant out. That'll strain your milk for ya, believe me. What ever is floating around in the air, trees and shrubs, what ever it is makes it hard for me to sleep an entire night through. I relax when I sleep, so I aspirate more of my own secretions. Which leaves me open to a lot of up and down at night. So I've only been getting a couple of hours of sleep in a stretch. However, this morning was a bit different. I fell asleep before 2130, woke up at 2230, then didn't wake up again until 0410. That was nice, it gave me a chance at some real restful sleep. And I felt better when I woke up. Well, except for the 20 minutes of hacking up everything but a lung and some toenails. No uber weird dreams either. That's nice. I've had some lulu nightmares recently. You know, the cold sweat and panting kind of nightmares. Those are no fun at all. I also need to supplement my Prilosec with something else too, the acid burps are just fricking awful,
On the positive side, because there always is a positive side to things, I got to see my son march in the last parade I'll get to go to. He does great and I really enjoy watching him march. And the band on the whole is damned good, so that's a plus. I found that I can live within my limits, and I know that those are going to change as time goes along. I have to figure out how to give myself a break when that happens. I'd love to go the airshow next weekend. But I don't know if I can stand to be out all day like I once did. It would be nice to see it one more time. I love to sounds of the old Pratt and Whitney engines. I saw lots of country that I'd often taken for granted, but see with a renewed vision now. The country north of Amarillo along the Canadian River breaks is beautiful. I've always known it was, but this trip I was looking at it differently. That makes for a lot sights that aren't quite so ugly as people think. I grew up on the plains. So flat or treeless is no big deal to me at all. The plains have a beauty all their own. They don't suffer fools very well either. The plains are where I learned to carry more than enough water. Where I learned that if it's fall, you better have winter clothes stored in the trunk of your car. In the summer it can be up to 110, in the winter the coldest I remember was 15 below zero, not counting wind chill. The guys here in West Texas grumble about the weather and wind here, and they don't see enough of either to really make much difference. So I laugh. And they get pissed, and I laugh some more. Where I grew up takes a certain mental toughness that I think people over look, simply because it's how they deal with the Big Empty. I think that's been a part of how I look at dealing with Terminal Velocity. Yeah, it's happening, so deal with it. Don't wussy out. I kinda like that.
Travel is kind of a hassle now. Nearly as bad as packing up for a short weekend trip with a baby. Nearly, but not quite. But, it's also important to me that I make a couple of trips. I know I'll be exhausted, and beat down, and sore, but I have things to do for me. I need to let some folks know how much they've meant to me in my life. What a positive thing they've done for me, and that's helped make me a better person all around. And I'd like to see the country side again. Were that I could do so on my bike, but alas, I think I've fooled around too long now and I'll never make that kind of trip on her again. I don't have the stamina for it, or the legs to hold her up after being in the saddle for 3 or more hours at a stretch. So, the car it is. And I've gotten so spoiled now, that it's gotta be the wife's car, because it's the most comfortable. The little Audi is great to drive, and I made round trips in it to Houston early on in my treatment. But man, it's a roadster, so it's small and rides rough. As it should, it's a sports car so it has sport suspension. It's gonna ride rough, but that's also it's appeal. So, sport sedan it is. I'll be comfy, and can let Liz drive some and I can drive some. Not a bad gig all the way around.
There are somethings coming up that are going to be both difficult for me, and overly pleasant at the same time. I can't divulge those yet, but I'll let people know as soon after the events as is possible. They should be fun.
What I need to make, instead of a bucket list, is a Last Time list. So I can go over that and see where it made it's impression on me and why I remember it like I do. And then my kids will have something they've been involved with written down so they have that as a keepsake from dad. I don't have a lot of material things. But that kind of stuff I will have in abundance.
Okay, time to take the Boy to school. Have a great weekend, and remember. Make today happen for you, not just to be a place to kill time waiting for something to happen
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