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
Friday, October 11, 2013
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
Thursday, October 3, 2013
Thursday's rant on pissing and moaning, or self loathing
This may turn into a piss and moan session on my part. I mean, gee, I'm slowly wasting away, I tire easily and rapidly, I sometimes have trouble breathing, I can't swallow, I bleed in my mouth and throat, all kinds of fun shit goes on with me. I generally don't think I piss and moan about it, because that only sucks valuable time out of the limited number of days I've got left to do something in. I like to remember, but I don't hold the past as the best part of my life. Today is the best part of my life because I'm trying my damnedest to live it to the best of my ability. I read and hear from some people "I'm this or that and I apologize or I'm sorry for what I am". Ya know what? Fix that shit or shut the fuck up. After some time it's nothing more than fucking annoying and drags down other people along with the person with that attitude. If you need help fixing that, then ask for it, and do what the people you ask advise, don't blow it off and then run right back to the same old bull shit. Living in the past, as well, does nothing for fixing your life so you can move forward with greater gusto and vision. Yes, I've had a great time in the past, my memories are legion and 99% of them are wonderful. But that's what t. hey are, memories. The best day in my life? Today. At midnight it's squeaky clean and hasn't had the chance to become fouled up. By the end of the day, if you've gotten anything accomplished, then it was a damn fine day. If you've made someone smile, laugh, or think a little, that's even better. So truly, today is the best day of your life. Live it like it was and suddenly things will get better. So there, that's my rant. I didn't sleep well and this has been banging around in my head for a couple of weeks. Maybe I've exorcised it for now. I certainly hope so any way.
So, what's new? Not a heck of a lot, really. My days have this wonderful routine that is both mind numbingly monotonous and stimulating. How weird is that? I have to do certain things like feed and medicate at certain times, nothing in stone but it's easier to have it set up that way, then it's read a bit. Or play a video game. Or like the last 3 days, sleep more and more each day. I didn't sleep well last night though. Up and down coughing. Sometimes a bit of blood, most times not. I do need to get my kids in and have a sit down discussion about my blood letting increasing. I don't want them to panic unless I say to panic. Increasingly I get restless, though, and feel I need to do something extra. So I try to walk. That's steadily fallen from a couple of miles, to a mile, to about a half mile now. My legs are going and I get winded rapidly. That's something to be expected, but I allowed myself to get lax in my diligence and it startled me as to the speed with which I got that way. Fast, as in three weeks time. I wasn't paying attention, I guess, and noticed that I wasn't hooking very far at all. I'm finding too, that I get to feeling way too full when I feed. I may have to try and alter that and see what happens. There have been days when I didn't want to eat at all, and I forced myself to do so. That to is part and parcel of what's working it's self into my life. The cancer doesn't care whether or not I eat, just that it eats away at me. It's doing it's job, and my job is to try and slow it down. We fight that little bit out all the time, cancer and I do. Eventually it's gonna win, but I want it to be on the ropes long enough it'll wish it never picked a fight with this old man.
My pain and swelling are on the increase as well. I can no longer get by with one or two doses of break out pain med, even with the Fentanyl 25 mg patch. So now I'm on a schedule for pain meds. In fact, I may have to have the patch and the break out pain killer increased some. Something I'm not looking forward to in particular, but as a good friend told me and I know to be true "Pain will kill you just as fast as the cancer will. Pain is exhaustive, and it sucks away energy you need to put up a battle with cancer. It makes it difficult to communicate with the family as well. When I struggle with pain, I get short tempered and grouchy. That's not a combination anyone wants to hang around with. And I know for certain, when I get that way I can be a total and complete ass. I also know that it makes it tough for me to get done what I want to accomplish for the day. Even if that's only to read 300 pages in a novel. I need to concentrate and if I'm hurting that's just not happening like it should. So, getting the pain under control is a good thing, excluding that it slows down the rest of my body as well. Some parts ain't doing what they ought. So I'm taking meds for that too. It seems as soon as I get one small problem ironed out, another pops up. You know, kinda like real every day life. I don't think, if we are going to be honest with ourselves that solving one problem doesn't open the door to another. It's the law one action having an equal and opposite reaction. Nature abhors a vacuum, which is why cancer sucks. Okay, that was lame, but I'm leaving it in anyway.
I don't know if it's the drugs, the cancer, or what exactly it is, but I can nod off at home without even trying. I don't when I drive, or I'd give the car up for good. I mentioned yesterday that I dropped off two or three times writing the blog. I've done that this morning as well. It could be that I'm boring myself half to death. Nawwww, that's not it. At least I hope not. I think it's the drugs and cancer combo that makes me drowsy. Now, if I could get all the drop off times to work in a row at night, I'd have something. Interrupted sleep is for the birds. It makes me even more tired than usual, and adds to my general grumpiness. I'd rather got 4-6 hours straight sleep, than what I get now. An hour or so, then awake for thirty minutes, then an hour or so asleep. Repeat if necessary. And it's always necessary. It also gives me some jacked up dreams. Most of those are just plain weird, which is fine. Who doesn't enjoy an odd dream? I have, however, had a couple of nightmares. Not the "Destiny destiny no escaping not for me!" from Young Frankenstein kind either. Real cold sweat nightmares. Definitely not the kind of thing I like to wake up too. More mostly nekkid, well endowed women, please, and less of the frightening stuff, if you please Mr Subconscious. I don't know how many other people fighting cancer have the same symptoms, but I'd be willin to hazard a guess more than just a few.
Since I started the blog as kind of an educational tool, based solely upon my experiences. I'm hoping that I am succeeding in that at least a little bit. I also want to kind of ease the nervousness that goes hand in hand with watching someone dying from being so afraid of what they are seeing. It's not pretty, I'm sure, to watch someone you love waste slowly away. And this is where the caregiver/family members show the strength they tell me they don't think they possess. I've got the easy end of this jobs. Just kind of sit around and fade out. Dealing with that, though, that's tough. So, I'm trying to make that easier, I hope, for other folks if this should arise. And face it, friends, we are all getting older.
Now, as it goes, I've got to close my eyes for a bit. Maybe gain enough get up and go that when I take the next round of meds I feel 100% better than right now
Jump in with both feet today. Act like this is the last time you'll get to take a breath, see how nifty the day looks when you do that. I did it every time I had to put on an air tank and mask to gauge a poison gas well tank battery. Get up there, malfunction, there ain't a lot of time to out run the H2S before you have to draw a breath. Teaches you to double check your equipment, and all ways have an escape route.
Love all y'all. Be patient, Lord knows I don't have a lot, but I'm working on it
So, what's new? Not a heck of a lot, really. My days have this wonderful routine that is both mind numbingly monotonous and stimulating. How weird is that? I have to do certain things like feed and medicate at certain times, nothing in stone but it's easier to have it set up that way, then it's read a bit. Or play a video game. Or like the last 3 days, sleep more and more each day. I didn't sleep well last night though. Up and down coughing. Sometimes a bit of blood, most times not. I do need to get my kids in and have a sit down discussion about my blood letting increasing. I don't want them to panic unless I say to panic. Increasingly I get restless, though, and feel I need to do something extra. So I try to walk. That's steadily fallen from a couple of miles, to a mile, to about a half mile now. My legs are going and I get winded rapidly. That's something to be expected, but I allowed myself to get lax in my diligence and it startled me as to the speed with which I got that way. Fast, as in three weeks time. I wasn't paying attention, I guess, and noticed that I wasn't hooking very far at all. I'm finding too, that I get to feeling way too full when I feed. I may have to try and alter that and see what happens. There have been days when I didn't want to eat at all, and I forced myself to do so. That to is part and parcel of what's working it's self into my life. The cancer doesn't care whether or not I eat, just that it eats away at me. It's doing it's job, and my job is to try and slow it down. We fight that little bit out all the time, cancer and I do. Eventually it's gonna win, but I want it to be on the ropes long enough it'll wish it never picked a fight with this old man.
My pain and swelling are on the increase as well. I can no longer get by with one or two doses of break out pain med, even with the Fentanyl 25 mg patch. So now I'm on a schedule for pain meds. In fact, I may have to have the patch and the break out pain killer increased some. Something I'm not looking forward to in particular, but as a good friend told me and I know to be true "Pain will kill you just as fast as the cancer will. Pain is exhaustive, and it sucks away energy you need to put up a battle with cancer. It makes it difficult to communicate with the family as well. When I struggle with pain, I get short tempered and grouchy. That's not a combination anyone wants to hang around with. And I know for certain, when I get that way I can be a total and complete ass. I also know that it makes it tough for me to get done what I want to accomplish for the day. Even if that's only to read 300 pages in a novel. I need to concentrate and if I'm hurting that's just not happening like it should. So, getting the pain under control is a good thing, excluding that it slows down the rest of my body as well. Some parts ain't doing what they ought. So I'm taking meds for that too. It seems as soon as I get one small problem ironed out, another pops up. You know, kinda like real every day life. I don't think, if we are going to be honest with ourselves that solving one problem doesn't open the door to another. It's the law one action having an equal and opposite reaction. Nature abhors a vacuum, which is why cancer sucks. Okay, that was lame, but I'm leaving it in anyway.
I don't know if it's the drugs, the cancer, or what exactly it is, but I can nod off at home without even trying. I don't when I drive, or I'd give the car up for good. I mentioned yesterday that I dropped off two or three times writing the blog. I've done that this morning as well. It could be that I'm boring myself half to death. Nawwww, that's not it. At least I hope not. I think it's the drugs and cancer combo that makes me drowsy. Now, if I could get all the drop off times to work in a row at night, I'd have something. Interrupted sleep is for the birds. It makes me even more tired than usual, and adds to my general grumpiness. I'd rather got 4-6 hours straight sleep, than what I get now. An hour or so, then awake for thirty minutes, then an hour or so asleep. Repeat if necessary. And it's always necessary. It also gives me some jacked up dreams. Most of those are just plain weird, which is fine. Who doesn't enjoy an odd dream? I have, however, had a couple of nightmares. Not the "Destiny destiny no escaping not for me!" from Young Frankenstein kind either. Real cold sweat nightmares. Definitely not the kind of thing I like to wake up too. More mostly nekkid, well endowed women, please, and less of the frightening stuff, if you please Mr Subconscious. I don't know how many other people fighting cancer have the same symptoms, but I'd be willin to hazard a guess more than just a few.
Since I started the blog as kind of an educational tool, based solely upon my experiences. I'm hoping that I am succeeding in that at least a little bit. I also want to kind of ease the nervousness that goes hand in hand with watching someone dying from being so afraid of what they are seeing. It's not pretty, I'm sure, to watch someone you love waste slowly away. And this is where the caregiver/family members show the strength they tell me they don't think they possess. I've got the easy end of this jobs. Just kind of sit around and fade out. Dealing with that, though, that's tough. So, I'm trying to make that easier, I hope, for other folks if this should arise. And face it, friends, we are all getting older.
Now, as it goes, I've got to close my eyes for a bit. Maybe gain enough get up and go that when I take the next round of meds I feel 100% better than right now
Jump in with both feet today. Act like this is the last time you'll get to take a breath, see how nifty the day looks when you do that. I did it every time I had to put on an air tank and mask to gauge a poison gas well tank battery. Get up there, malfunction, there ain't a lot of time to out run the H2S before you have to draw a breath. Teaches you to double check your equipment, and all ways have an escape route.
Love all y'all. Be patient, Lord knows I don't have a lot, but I'm working on it
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