A Month Flies By Before I Knew It, Go Figure

  That's crazy. It's been a month since my last blog? Good Lord, that's the height of lazy, even by my rapidly easing standards. It's been too long. The days are getting more toward the half day good, half day less or just plain bad. Friday and Saturday were good days all day long, that's this past week, not way back a month ago, while yesterday was a sleep all day kinda thing. Partly because we are trying to get a handle on my increasing and potentially more dangerous than normal sleep walking. I don't remember any dreams in the last two to three months, until Saturday and Sunday night. Those that know me well, know that is really unusual for me. Normal is remembering a dream I can tell you conversation, area, whether or not I can see my hands (not yet, but soon, I hope). Not to remember any is not only surprising to me, it should have set off more alarm bells than 12 alarm fire. I should have noticed, but I believe that even while following the instructions, I was over medicated. Painkiller wise at least. Too many opium derived drugs working together. Fun fun fun and no pain at all, bad bad bad side effects. It also turns out that one of the medications we were using to control my secretions also is bad for you in the long term. Can make you crazy. According to some, that would be hard for me to see a difference.

  So, in this past month, I didn't think much had changed in my progression towards Critical Mass. I had not thought so, but last week certainly showed me wrong. I swell. My face and other parts of my upper body, once confined to above my collar bones. It's moving farther down my body, slowly but surely. It does this because my lymphatic system is compromised with my squamous cell carcinoma. In 2008, it had a spot that my body fixed on it's own, the secondarily slipped into only one lymph gland. This time, same thing, only my body didn't clear up the primary site alone, and it piled into other lymph glands. Even the third time last July 7th, and concluding treatment July 23rd, bailed into more lymph glands. They transport fluid around the body for cleansing in the liver and kidneys, then dispelled or used. I believe these are beginning to fall apart at a higher rate now, and it's showing in the amount of time my lymphedema therapy stays. I did pretty well this past weekend. If not less swelling, it looks like I held my own pretty well. I also believe the next two weeks will tell whether or not I should continue the therapy. It was going to come to an end, I knew this, and almost a year for a fairly aggressive cancer isn't to shabby I don't believe. Me, the Man Up, and my therapist, along with all of you, we've done some damn stellar work in this arena, we all deserve a slap on the back.

  All of the things I'm doing, or have tried are going to have a diminishing life span. As well as myself. This was an inevitability. Quite frankly, I've made it MUCH farther than I even imagined I would, even though I keep trying like I know better. This stage, though, is quite noticeable to me. I tire exponentially faster than I did even two weeks ago. I had a spot in my upper right leg, the one where the muscle was taken for the first flap put in my left face, that eventually died. It swelled enough for me to find it, on top of the pain that made me limp, which I tried to cover up from my wife. (yeah, that worked). The fact that I've made it farther than I originally thought, and as of today am 23 days from my year of death, is more determination and support than any medical reason. That's all kinds of support, folks. Yours, my hospice nurse, family, if you're a believer The Man Up, if not then just never letting me forget how I prefer to live my life. All of that is why, at this point all medicine did was fuck my face and throat up to the point I can't swallow and I look like I fell into a Mike Tyson right cross and upper cut. No, that's not entirely true. It has given me another 12 months with the family. By God, that's more than just a little time, isn't it. We've had time to get all the stuff most folks are rushing around to get done, funeral, will, argue, more argue, laugh at how dipshit is it to argue, then argue about that. Never anything big to argue about, most at me for procrastinating. I am a master of that at home. Work? No damn way, we do it today, because tomorrow might be a lightning storm, too cold, too hot, way to windy, short handed. We do it today at work, maybe tomorrow is a little slower. Maybe tomorrow is just fucking perfect and you can catch up some of the minor shit that has been shoved back because of major shit going on. But, that was then, this is now. Now is what it is and I'm trying to have fun doing it. So, in having fun Friday and Saturday, I baked 6 loves of bread, 3 large, 3 smaller because that's how I can make my Aunt Marge's bread recipe work out for me.  Who'd thought that I'd find baking as something fun and productive? By The Way!!!! Aunt Marge's Country Style Crust Bread is the absolute  best bread I've ever eaten. I'm diddling around with adding to it, like raisin bread, cinnamon, and Saturday, after I put the loaves in pans, and right before I hit the oven with them, I split the top on the smaller loaf and poured a dark cherry and brown sugar reduction into it. I believe it came out better than I expected.


  Okay, that's it for the day. I've got some things I need to do. Therapy, get Baby's feet balanced, pick up formula from Hospice, nap, so I'm not so shot in the frisking ass at the end of the day. Then talk with Dec out in the two person swing about some driving stuff. No, I am NOT going to teach him how to do 95% of the stuff I practiced and did in HS and after. Sheesh, I'm gonna try and be responsible this time. Although, it served his older sister Sarah quite well a couple of times on the Loop around Midland. Once, a 360 when she avoided having her front end clipped by a guy who missed his turn. Too much brake and turn all at once, got her spinning, then no brake, and turning slightly against the spin so the car didn't take the new direction as a need to spin, and no throttle until she was under control. Pretty proud of that one. Most times, like a blow out, brakes are a strict NO NO! A sharp tap, maybe to begin to slow, find a way out, then drive through.

  Love y'all, be safe, have fun, mostly be yourself, you're better than you think you are

Well Dammit All

    Yep, that's it. Dammit All. Damn the Cancer, damn my lack of energy FROM the cancer, damn my lazy ass that hasn't kept up with people. Dammit All.  See, this isn't how this whole damn thing was supposed to go. I wasn't supposed to doubt myself and my abilities to fight the cancer as it got more dedicated to killing me. Every day was supposed to be all cherries and whipped cream. Kiss my ass if it's a damn sight more difficult than that. Some days I doubt myself. Like Saturday. Friday, great day, baby. Lots of energy, did some cookin, baked a pound cake from scratch. Saturday I woke up at 0600, absolutely unable to decide what I should do first. I got started, got the Ativan that holds off panic, then in an hour, I got the anti-depressant in me, a couple of hours after that, I'd not fed, I didn't have anywhere near all my drugs in me, and I STILL couldn't group my shit without help. That, girls and boys, was disconcerting to say the least. So, after getting a large amount of help from the Lovely and our friend Cheri, I managed to sleep close to 21 hours in total. Did I need that much rest? Apparently. I thought I'd be pretty spry Saturday after having a somewhat better than average day on Friday. Was not to be. Sunday, though, that went pretty well. Up at my usual, felt pretty good, took a short nap. Gathered up the ol' walker and went with Liz and Cheri to Stanton, Tx for "Old Sorehead Days". A city wide flea market kind of deal. Some of the outdoor furniture has really improved in the last 20 years or so and Liz got a really decent two seat lawn swing for a more than reasonable price. I got around without completely passing out, a "Whoa Buckaroo, that made ya wobbly!" That was from bending over to pick up my pen, then standing up too fast. Silly boy. My Lymphedema therapist took a week vacation. I'm retaining more fluid in my shoulders, neck, and face than the Titanic forward storage hold. Makes me terribly uncomfortable, as well as drool like a herd of Pavlovian Dogs staring at the supper dish.

  It's been a bit over two weeks since I blogged last. That seems like an incredibly long time to me, when I look at the date. Odd isn't it, how our perception of time gets all muddled up at times? How long did it take to pop Jiffy Pop when we were kids? Three, four minutes? Felt like an hour or so, though, didn't it. For perception on time, I look back at a project my youngest son's incredibly hot Kindergarten teacher did that I thought was one of the most innovative things I've seen a teacher do with kids. She had them write down their favorite food and the recipe to make them. She typed them all up, put them in a little book that looked like a real cook book. It was absolutely fabulous. One of my son's favorites were baked potatoes. This is now our lesson in Perception of Time. The recipe reads thus: "Get 6 big potatoes, my dad eats two. Wash them off and poke holes in them with a fork, be careful not to stab yourself. Put them in plastic bags and put them into the microwave. Cook them for six days. Delicious!" Six days. That is one eviscerated potato. It's nummy goodness completely removed I imagine after hour 6 of 134. That, though, is how it looks to a five-year old that is waiting for his 6 minute potato and Iwantitrightnowdarnitmomitsbeenayear attitude. Time drags when you're a kid and there's something you want to do, play, or eat, or being punished. You could have flayed my youngest with a Cat-O-Nine Tails, and he'd not said a word. On the other hand, put him in a time out for ten minutes and his entire world fell apart. There was wailing, lamentations, rending of cloth. The punishment was blatantly against the US Constitution, was used by the Roman's against Christians. The only thing worse to him was hearing, "Five more minutes if you keep crying".
   I'm very close to that mark myself right now. I've been home so long, slowly getting worse in more than just a few ways. Some I just notice, and when I take stock of myself, hell, that's been going for more than a couple months. It just got to the point it moved onto my radar screen with louder blips. In five and a half months it'll be two years since I started chemo to reduce this fucking tumor enough that I could wait nearly 50 days to have my face carved up like a piece of mold covered cheese. In some cases the time is blasting by, in others, it's dragging a battleship anchor behind a 1963 VW Beetle.

  SIDEBAR: The new show on TNT "Murder in The First", pretty good. One detective's wife dying of         cancer, makes me a bit uneasy.

   I'm noticing something else that I'm starting to lose. Cancer, drugs, lack of use, take your pick, but it makes me a little spooked and more than a little uneasy. It's like this. I could stand still, close my eyes, and retrace my steps almost precisely in my mind like I was watching a movie. I could sort of do that down hole in wells. See the tools work or not work, how far away from X while we were still working on Y to get there. Not as good as my old man, but pretty fair. My dad, though, couldn't find his ass with both hands if he wasn't standing right where he stopped to look for it. That little skill that I have used a LOT is slipping away. I'm not certain why, but it is slippery in there anymore. I've got a couple things working on me I didn't have two years ago. You know, like opiates, a couple of different pain meds that aren't opium based. That may have something to do with my missing some of the fun mental games I used to play in order to try and keep the old noodle from going to soft.  Wow, that was a bad choice of word grouping wasn't it?

    After all that is said and done, today is a good day. Massage early on, lymphedema therapy, writing the blog, a couple of funny things that happened. The last one was a close call, but I'm chuckling about. I have to change tubes once in a while during the day, just the nature of the beast since I can't swallow. Here's how it played out. You older folks see if you can read this with a Howard Cosell voice rolling around.
  "Here comes Smith. SUCCESSfully cleaning out his tracheostomy tube now searching for the KY Jelly to make insertion a smooth and simple exercise. NO! It can't be he's grabbed the tube of BEN GAY COOL  TREATMENT!! That will be a horrifying and painful misTAKE if he doesn't catch the error. He sees it! Saving himself from what would be the remainder of his life in abject ridicule and self loathing."


  You all have more fun than a box full of mixed chocolates

Boy, I'm Clueless!! What Am I Going to Put On The Page?

  Solo, that's how we are supposed to go through life, board everything from ships to planes, to partners in our life. Hide the bad stuff away, only take it out when the pile needs to be added  to, then watch it all come down around our ears. It feels as if a ton of bricks hath fallen upon your psyche. Hoard the problems if you think you can handle the pressure, that  up the road, keeps bringing to the table. I've got news for you brave souls (I've done the hoarding of problems myself). Don't do it. Life can be hard enough as it is without being worn out before the really tough and frightening problems jump up onto the wagon as well. That'll be a break down moment. That's going to leave the person you're trying to help, back dealing with stuff they probably can't handle. Being Caregiver, you've got to take care of yourself first. If you go down, so does the person you're helping. Without you, they'll suffer more than is needed, and you'll feel guilty about that. Don't change your behavior or look to het help your self, because, the person you're helping look after wants to become a bedridden sloth. End it now, for heaven's  sake. Don't diddle around. either, while you do that your husband, wife, daughter, son, or possibly Grandkids are going to have to come to grips with the fact that they've not been as good at keeping an eye on the sick person, as maybe  they should have. Then again, if the primary caretaker isn't keeping up the communication, the secondary and expanded family caretakers aren't going to have a clue what needs taken care of with the sick person. I implore you, caretakers, share, it will allow you and everyone else a break from the numbing treatment and care that a terminal patient will eventually come to need.

    My pain got to the point not much would shut it down like it did four or five months ago, so I asked them yesterday to bump up my meds. I was thinking just the patches, then something morning and evening, and that I could bear. You know, waking up hurting badly in my neck and face and having a bit of Morphine to slow that down. And do the half dose thing once or more a day. The way it used to work, On 175mg per hour Fentanyl,  40 Mg/ml Morphine, Max on the Lortab, that was the first thing in the morning, because my pain was worse then. Then later in the day it was half dose of Morphine, another half dose in the afternoon the at 1900, I'd take the 2 times a day drugs, and I used it the same way I did the morning meds. Off to dreamland, and up at 0200 to 0230 to start my day again as best I could.
   Now, the Patch is stronger, I'm wearing 200 mg/hr for 72 hrs now. They changed the liquid from Morphine to Oxycodone, and the Lortab stays the same. I'm keeping a drug log for the Hospice Dr and PT. If it hangs in there like this, I'll be using about 2/3 less on Lortab than I have been. The stronger Patches and Oxycodone must be doing their job, as I've not used near as much Lortab for break through pain as I had in the past. They aren't leaving me as lethargic either. I'm keeping a usage log on the Oxy, Lortab, and for myself the Ativan. I've been trying to hold off the Ativan but I don't know if I can stop the feeling of an upcoming anxiety attack like I did yesterday. I'm passed the time I normally took the stuff, and my legs are getting to feeling like I need to run a marathon, I've been sweaty, then not sweaty. Hot,cold, hot, cold, and is about to stick with Hot and sweaty. Bad combo if I can't keep them from happening. The next thirty to forty-five minutes will tell the tale. I have a concern, in that if I can keep one attack off,  the next one happen ahead of you, and you want to try and make it quit again. If I get behind on the medication on the anxiety stuff, I'll be standing in a corner breathing so fast I'm about to hyperventilate, and couldn't find up if there was a map and someone leading me there. I hate those fucking anxiety attacks. Not only are they debilitating, but they suck away any of your control. I used to get them trying to read a new recipe for something I wanted to try, or when I was just standing writing a note. I learned to hold it down a bit by swaying left to right. It sets a rhythm that I can adjust my breathing to that speed and I'm not going to have a run away. Oil Field Example of a real runaway, on dry land. It's a smaller version of a gas engine that's come apart for the same reason, only it stayed where it was supposed to remain. My example went like this. I drive up, something just didn't look or feel right. It wasn't, the fly wheel had gone on a walk about. It's not light, there's nothing it won't run over. Unless it's tall and solid.
So, this is what my example did. This 1600 to 1800 pound fly wheel, while the engine is building into a marvelous runaway, breaks off the two safe guards and just keeps making blinding speed, offerings to the Gods of Speed, as it were. Then, finally a weak link, the shoe that slips over the crank shatters, and the flywheel is now going Eleventy bazillion miles per second and jumps off the crank and begins working on it's ultimate freedom, out of the the boxed in frame that it settled into. Why, shoot, that's only three feet deep, a little over half way out. It hits something that gives is a bounce or two and SHAZAM!!!! that bitch is headed down the road. It made it a half mile across pasture where the wet grass, fertilizer and cow shit do their thing , and it slows down a bit more where it finally stops and behaves itself by lying down for a few minutes until we came along to pick it up and get that back where it belongs and pumping my paycheck into the tanks LOL


 So that's a run away. In people its much the same. "I can't let anyone harm my baby!" "We can make him (or her) stew through that shit until I say it's okay and safe out" (which is never. It's never all safe or all evil).

  My advise? Set rules and consequences that everyone under stands and can follow. It's not that tough. We try and make everything so drawn out that it that it is impossible to follow (ask the indians how that  gets proven). Ponder those things for a bit, and until next time

Let the soft rain grown your plants
A gentle hand lead the way
Let the bad thoughts be kept in a jar……two hundred away from you
On Second thought, give the bad thoughts equally to the people who you stolen them from

Hugs and all that fun almost groping.
Later Agitator