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
