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My thoughts released; a mind set free |
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These pages contain my thoughts, from meandering ideas and persuasions to deep cerebrations and serious mentations. Why, for what purpose? To release my mind and set creativity free. Somewhere inside the constraints of my mind dwells a writer, a poet, an artist who paints with words. In here I release those constraints and set the artist free. Perhaps, lost somewhere in the depths of thought, is a story or a poem, waiting to be written. |
| This depends on, or that depends on.... We've all heard this or something similar. But it also depends on the type of depends we are using. It can mean "be controlled or determined by". Similarly, it can also mean, "turn on or hang on" as well as, "be contingent on; be conditional on; be dependent on; and all, etc... as the list of meanings and uses goes on and on. But that's not the depends we are talking about, although some of the meanings could be associated with the type of depends I'm talking about. The depends I speak of are adult diapers or undergarments for people who have lost some or all control of bodily discharges. Now, why am I speaking of Depends? It started last night after I retired to bed and then again today while driving back from my wife's therapy session. Last night we returned home from shopping late, so supper was also late. The last few days have found me feeling nauseous after eating, and last night was no different, and soon after I finished, I needed to take my anti-nausea meds. I have two types, one dissolves on the tongue and works great, but I can only take two of them a day, and I had already taken both. The other type is a small pill that works for about twelve hours, but it makes me tired and dizzy. So, shortly after taking one of these, I found myself heading to bed. Around one-thirty this morning, I woke with stomach cramps and the need to get to the bathroom real quick. I made it, but just barely, as the chemo also has me suffering from diarrhea for the last few days. After I returned to bed and before I fell back to sleep, I found myself thinking about the chance that I didn't get out of bed quickly enough; should I invest in some bed pads just in case? I soon fell back to sleep and didn't think about it again until today. My wife dropped her car off at our mechanics to get the oil changed, winterized, and the snow tires put on. I drove the Yukon in with the dogs riding with, to give her a ride home. After we got home, she made pancakes and sausage for breakfast, we ate, then it was time for her to go to physical therapy. Since she didn't have her car, and since it's a nice sunny day, we (me and the dogs) decided we would give her a ride. After we took the scenic route home, stopping in Ottertail for some milk, then continued on home. But before we got to Ottertail, my stomach began to churn, and I knew I'd have to run to a bathroom soon. The problem is, my digestive system is so torn up from the chemo, I don't know for sure if or when I have to go, until I'm actually going. Sometimes I'm barely in time, other times it's like I'm sitting here for no other reason than it's better safe than sorry. Anyway, today I used the bathroom in the store just to be safe, but after a few minutes I understood that it wasn't time yet. So, we got our milk and a bottle of brandy (strictly for medicinal reasons) Then drove home. By the time we arrived, I was barely able to make it into the house and to the bathroom in time. Had I been afflicted with diarrhea like I was last night, I would have never made it. So, again, the question arises: should I get a package of Depends just to be safe when I'm away from home and a bathroom? When I'm at home, I'm fine, I can get to the can in time. But what if I'm out shopping and the bathroom is in use? What if we are out driving and it hits? I have one week until my next and last chemo infusion. I know from experience that the next week will show some slight improvements in how I feel, but not in my digestive issues or how often I need to use the bathroom. Then the last infusion, but also it will be the worst, as each infusion leaves me sicker and weaker than the previous. So, it will be at least two or three weeks after the last session before I can even begin to recover and start feeling better, and likely another month or more before I can even think about not having to stay within minutes of a bathroom. Pride tells me I'm not ready to depend on Depends, but common sense (which is now uncommon) tells me it's better to play it safe than to suffer an accident. I wish I knew how much worse this is going to get before it starts to get better. Like the neuropathy, my digestive problems will continue to get worse for a while, even after the last chemo session, but unfortunately, no one is telling me how long things will continue to get worse. They can't because everyone is different. So, now I contemplate, do I depend on my ability to get to the bathroom, or do I get some Depends just in case I can't depend on getting to the bathroom in time? |
| We have a new neighbor, a young mother of a three-year-old daughter (I'm guessing the age). The other day, she walked over to introduce herself and her daughter when my wife and I returned from some shopping. The mother seems nice, and I was impressed that she came over to introduce herself and her little girl. The girl is shy and didn't do much except hide behind her mom's leg. But, she did say that it's almost Christmas and she wanted Santa to bring her an iPhone. I found my mind wandering (it often takes off on its own) to a time far removed. Instead of a little girl asking for an iPhone, I saw a little boy asking for a Slinky. I also received a Viewmaster and some assorted viewing discs, clothing, and an assortment of other toys, I'm sure. Sure, a bit over half a century has passed, and with it, something extremely valuable has passed by as well. Imagination! Back then, I could use my imagination to create whole worlds. I didn't need something to entertain me; I could entertain myself with the simplest of toys. Likewise, my love of reading developed as a direct result of my imagination, of reading another person's story while using my imagination to create my very own version of what was described in print, and to be able to transport myself into the story; to not just read it, to be there and to live it. Do children still have that ability? I say yes, it's still alive nd well in the minds of the young. But, it begins to go dormant as soon as gadgets like cell phones, tablets, and movies take the place of using one's own imagination. Does anyone else still look up at the clouds and see the many different shapes that drift across our sky? |
| Having a month-long break allowed me to start feeling a lot better. My taste returned to normal, I was eating better, not tired all the time, and just feeling better than I have in almost six months. Then, last Tuesday, the chemo infusions started back up, my last two infusions. Because they were tearing me up so much, they were reduced in potency, and for a few days, I didn't feel much worse than before the treatment. The last few days, however, the side effects have begun to return. I find myself feeling tired and run down, my neourophay has gotten more intense, and I'm suffering a lot of digestive discomfort. Today I also noticed I have little appetite and have to make myself eat. Of course, the change in my taste has a lot to do with it; nothing tastes the way it should. The symptoms are not as severe as before my break; they are actually a lot milder so far. But, having now had a break from them, I'm reminded how miserable chemo is, and how I eagerly look forward to ending the chemo. I have eight more days until my last chemo infusion! After, I know I'll feel even worse for a couple of weeks, but then I can start to recover, to feel better, and get my life back. |
| I had a terrific break in my chemo routine, thanks in part to the medicine that made me sick and forced me to miss a session. The added time had given me time to start healing; I was feeling a lot better, not back to my old self, but well enough. Now, four days after my last infusion, I'm once again sliding down the banks of the River Styx. I had felt like I had been wading, waist-deep, in the deathly waters, trying to avoid someone in a boat. I'm not that far gone yet. I may be slipping down the bank, getting closer to those dark, swirling, and unwelcomed waters, but I'm not in them yet. I'm hoping this is as bad as it's going to get from my last infusion, but I'm sure the next one will knock me down even more. But it's supposed to be the last session of chemo, and even knowing it's going to be tough, the thought of being done with them gives me hope and strength. Next month, I will see my VA doctor to talk about some options for the neuropathy, and at that time, I will discuss with her my desire to talk to a different oncologist. My current oncologist informed me that doing a CT Scan won't show anything until the cancer returns, yet he still has me scheduled to take one a week after my last chemo session. I asked what options are available if the cancer shows up, and he answered, "There aren't any, you'll die." Not his exact words, but close enough; and enough reason to seek out another opinion, and possibly, more options. |
| I just returned home from a visit to the local hospital, where they did some labs and pumped me up with a liter of salt water. Because of my recent surgery, I have a difficult time eating propper and I don't drink enough water. Therefore, I get a bit dehydrated, I'm usually low on proteins, and my electrolytes are out of whack, especially potassium and magnesium. But, with the recent potassium and magnesium supplements, as well as some Ultima Replenisher, I have my electrolytes up in the normal range. Surprisingly, my blood counts are almost back to normal; they always drop after an infusion, and my proteins are in the lower end of normal. I have another week before my next, and likely last, infusion. At least that was the message the last time I talked to my oncologist. I also have an appointment set to talk to another oncologist from a different cancer center to see if there is more that can be done to ensure the cancer never returns. Right now, it's about ten more months of immunotherapy, but I have read and heard that there may be more I can do. So, another oncologist seems to be the direction to go. |
| Another busy and productive day for us. We received a call this morning that the pork we had ordered was ready. One hundred and seventy pounds of pork, four smoked hams, a lot of bacon, link sausage, sausage patties, and bulk sausage, as well as over a dozen roasts and a couple of dozen packages of pork chops, four pounds of lard, and a half dozen packages of liver; the average price comes out to be $3.30/lb. We drove over and picked it up, got it home, and organized it in the freezer before my wife had to get ready for work. Today is her first day back after the accident, but she's still on a lot of restrictions and only working four hours a day for the first week. If things go well, she'll work six hours a day next week and then increase to eight hours by week three. She'll remain on work restrictions until she meets with her doctor again, and hopefully, they (workers' comp) will continue her therapy. Even though I just had an infusion, I'm feeling pretty good. I even cooked her lunch while she got herself ready for work, then after she left, I started cleaning out the sinks and washing machine as they were all stained from the rusty water. It took about three hours, but I have cleaned up most of the rust stains, and the sinks look great. There's still a bit of rust buildup in the bottom of the toilets, but I ran out of Iron Out, so they will have to wait for a while before I give them another dose. The washer cleaned up pretty good, but there's still a bit of orange discoloration around the top of the washing tank. I also cooked up a package of the fresh pork liver for me and the dog's lunch, then took them outside to enjoy a sixty-degree day for a while. Now, I'm feeling pretty tired and looking forward to a restful afternoon and evening. But first, I should find something to fix for dinner, my wife should be getting done with work at four, then a stop by the store to get some more rust stain remover so I can finish the toilets and clean up the showers. |
| It's been a busy day; the water guy was over two days ago to check our water system because it's gotten very rusty. I should have notified the landlord sooner, but with the chemo and medical appointments, and me spending so much time lost in the chemo fog, it just got worse and worse. The old softener we had was likely installed when the house was built, a definite antique. But it seemed to do the trick even though the water still had a bit of an iron taste. (All the water in this county seems to be heavy with iron) But I called the landlord about our water having a slightly orange color after sitting, and he called in the water guy to get us fixed up. He checked everything on Monday, then ordered a new, modern softener and installed it this morning. It's amazing to have crystal clear water again. But now we have to learn how much soap to use. For example, we hand-wash our dishes, and we had so much suds using the amount of soap we normally do that we had to rinse everything twice. I imagine the laundry will be the same; we won't need half the soap to get things clean. After he left, I had to go in to get an infusion of water after they removed the 24-hour chemo pump I came home with yesterday. This takes a couple of hours, which puts it time to get dinner going when we did get home. We had to stop and get some baby potatoes and cabbage, as well as another bottle of iron out, so we can start removing the rust stains from our clothes and dishes, as well as the sinks, showers, and toilets. Now, dinner is done, the dishes are washed and put away, and I'm relaxing for a bit in here. Tomorrow I'll be home alone, well except for the dogs; my wife is finally being returned to work, but under restrictions and only four hours a day for the first week, then six next week, and up to eight the third week, but still with a lot of restrictions. (She was injured while working in a care facility when a rather large patient was being assisted to the bathroom and passed out, landing on her as she did her job to let him down as gently as possible and keep him from injury. In the process, he landed on one of her legs that was at an incorrect angle, and she tore a tendon off her hip.) Anyway, I don't foresee any problems and am hoping I'm up to cleaning up some of the rust-stained items and having a nice dinner ready for her when she gets home. |
| I restarted my chemo infusions today after a month break to recover from the two I had after surgery; they knocked me down, kicked my ass, and left me feeling like I was wading in the river Styx trying to avoid some guy in a boat. But after a month, I was feeling pretty damn good. I wasn't healed or over the damage chemo inflicts, but I was heading in that direction. I suppose I could say I had found the bank and was halfway out of the river, with one leg on the shore and one still in the water. Oh, and it seemed I'd ditched the dude in the boat. Now, after six hours of infusions, then a portable pump to infuse the last batch of poison over the next twenty-four hours, I find I've slid off the bank and landed on my ass in the river, again. It's not as bad as it was, but I'm feeling pretty rough. I'm hoping the steroids I take tomorrow and the next day do their job and help me feel better. If they do, great; if not, I'll suffer a bit for the next few days or maybe a week. No matter, it's bearable; I think it feels worse because I had the break. It sounds very positive that I will only have one more infusion in two weeks, then the chemo part is over. However, I do need to have some tests run, some scans done, and talk to my oncologist before the next infusion. There is a slight possibility that I may have to do two more because he reduced my infusions down to 70% since they were tearing me up so badly. I'm sticking with Oddball's outlook on this battle, especially since so many of you are sending me positive waves: "Crazy! I mean like so many positive waves maybe we can't lose! You're on!" from the film "Kelly's Heroes". Like Oddball, I have to express optimism and hope during a challenging time. |
| We all have them, good days and not-so-good days; even the occasional bad day can afflict us. I've been having a string of pretty good days with my break from chemo, but then, like usual, a few bad days are sure to come along, and they did. Nothing too serious, thankfully, but still bad enough to make me miss a few days here. A couple of days ago, I found myself feeling sick, tired, and full of aches and pain; the worst I've felt in quite some time. It seems I contacted some food poisoning somewhere. Nothing too serious, most people wouldn't even be aware they had eaten something contaminated. Others may get a bit of an upset stomach and maybe a touch of diarrhea, but with my system battered by the chemo, I'm very susceptible to any infections. Long story short, I got a stomach bug that normally wouldn't bother a person much, if at all. But for me, I got pretty sick. The medication they administered seemed to wipe the bug out, and today I'm feeling pretty well again. The only lasting effect is that I need to stay close to the bathroom yet. On the upside, I will be starting my daily tasks over again and will once again have all the badges arrive on the same day. It also meant having to miss a visit with some family that was in the area, not just me, but my wife stayed home to take care of me. How is that a plus? Because we learned this morning that everyone who got together ended up sick with either the flu or Covid! Tuesday, I start my chemo again after a nice break and recovery from the last two sessions. Two weeks after that, I have my last chemo treatment, and then it's just the immunotherapy for about ten months. I'm hopeful that after a nice break and some time to recover from the previous treatments, the next two won't be quite as bad. They are also reducing the strength since it wreaked so much havoc on me, another possibility of me not getting quite so sick after. |
| Yesterday I had an endoscopy, again. My throat, at the point of the surgery, keeps restricting and making it difficult to swallow. On Wednesday, he looked at his handiwork and expanded the area to 20 cm to make it easier to swallow. The problem is, in stretching the tissue, some swelling is normal, which tends to restrict the now unrestricted area. Thankfully, the swelling tends to go down in a couple of days; tomorrow should be a lot better. With the break in my chemo, I'm finding I'm feeling a lot better, so I've been staying busy doing a lot of the things I put off because of the chemo. I have until next Tuesday before I do another infusion and the unwanted side effects flare again. But, I only have two, one on Tuesday, and the last two weeks later. I got this! Yesterday, we stopped at Menards after the endoscopy, since I was feeling pretty good. We had a few things to pick up and wanted to look at the freezers in case we needed to get something more for putting food in; we recently ordered a whole pork, and our 7 cubic foot chest freezer is just big enough to hold it, but there's not much room for anything else. Luck was with us, they had a garage ready (it can be in temps as low as -10F), can be used as a refrigerator, and would hold a half a beef (17 cubic feet). Oh, and it's an upright, so it's easier to find items. This model was listed for about $550.00, which I thought was pretty good. But they also have a seven percent sale going on, so we'll get a rebate check to add to our collection. They come in handy when buying materials for the camper or other fix-it projects. Now, as long as we have the money on hand (we received some back compensation for about three months), we are going to look into a quarter beef, so we have most of our meat purchased for the winter and then some. This seems like a nice way of reducing costs for the winter, and should help out since our funds tend to be pretty low with all the medical costs going on, and my wife is out of work until next month. |
| I'm not sure how I managed to miss a day blogging here, but I did; I missed yesterday. It was a pretty busy day, we went shopping in a town about an hour's drive from us, visiting multiple stores We also drove over to Sunnybrook Park since we were in town, and let the dogs get some exercise while we strolled around the park. The park was empty, but the campground still had a half dozen die-hard campers. Today, we headed out in the opposite direction, towards Fergus Falls. About an hour's drive brought us to the Amor Pork Store, a small store in the middle of nowhere that sells pork products from the Amor Pork Farm across the highway. We picked up a few things while we were there, but our main reason for driving over was to order a whole pork to fill the freezer for the winter. It will cost us $3.50 per pound for the pork, including all processing fees. The price also includes smoking all four of the hams and the bacon, as well as breakfast sausage links and patties. We ordered one-third of the trimmings as links, one-third as patties, and one-third as plain ground pork. Now, we have two weeks, approximately, to get the freezer emptied; it's not quite half full, but if we clean out the refrigerator freezer and organize it, everything in the chest freezer should fit. With two weeks to consume some of it, I don't foresee any problems. We also found we can buy a whole beef chuck roll (it's the entire boneless front shoulder) for $5.50 per pound; we just have to cut it up ourselves, which isn't a big deal. We could even grind our own berger, but they also sell frozen, one and a half pound packs of ground beef for the same price. |
| Tonight, we set the clocks back, one of my least favorite nights of the year. The other least favored is the night we move them ahead. I would really enjoy seeing the end of this foolishness; it doesn't matter if it's permanent Daylight Savings or back to real time. I personally prefer real time, but like I said, I can live with either, just pick one and then leave the damn clocks alone. Now that I have my semi-annual rant out of the way, I can move on to how today went. We had some work to finish up outside before winter's snow hits, and we got it done today. I helped rake leaves to put in the flower garden (we use them to insulate against the cold). I mulched a bunch more and, together with my wife, used the blower to get them away from the house, campers, and vehicles to help keep the mice under control. If anyone has any tried and true methods of repelling mice, I sure would appreciate learning them. We use a product called Cab, and it helps, but in the last few years, we still end up with mice getting into the camper. We never had an issue with them in the camper until a friend told us to put dryer sheets inside to keep the mice out. We tried it, only to discover the mice seemed to like them and did the most damage where the dryer sheets were. Coincidence? Possibly, and for sure they didn't repell them, but for some reason the mice are out of control here. All the people we know around us are having problems with mice. How bad? While raking and blowing leaves, I disrupted three mice that were hiding under the leaves. I also saw two run across the floor of the garage (they can get in and out by the overhead doors), and we've trapped four mice in each camper, one a day for four days! As much as I dislike using deadly force, I've concluded that there's no choice. I could use the live traps, but they either are going to find their way back here, or I'm going to be moving my problem to someone else's property. But, if anyone had any ideas of how to repel the little shits, I'm all ears. |
| Today is wet and dreary with a possibility of some snow mixed with the rain. It's currently in the mid-forties, so I don't foresee any snow today. Tonight, however, it's going to drop below freezing, and snow is possible. Tomorrow it's back to partly cloudy and in the fifties, so any snow we do get is going to melt quickly, if it even accumulates. But it indicates we're running out of time to prepare for winter; one of these days, the snow will be here to stay. We don't have a lot to get done outside, and the plan is to spend the day tomorrow getting everything done. Today, my wife is off running errands and spending some time painting with one of the residents she cares for at work. I'm home with the dogs and spent a big part of the day snoozing in my chair. Not sure why I was so tired, but it is a perfect day for napping, reading, and spending some time here. I may even be able to finish my book, Time Trader's, by Andre Norton. It's a re-read for me; I first started reading some books by Andre Norton back in high school. Back then, it was books from the library; now it's an ebook on my Kindle, free with my Prime membership. I am thinking about subscribing to Kindle Unlimited, and maybe even trying Audible since I can do three months for $0.99 a month. |
| I had plans to get some yard work done today, since I was feeling pretty good, but it's almost eight in the evening and I've accomplished squat. Not that I'm complaining, it was a good day. I've been waiting to get our Yukon into the shop to get a front wheel bearing replaced because we've been short on funds since this cancer BS started. But we recently got a check from the VA after they determined my cancer is service-related, and I used part of it to get my truck fixed. The garage called and said it was ready about ten this morning, so after finishing our Bible study, we drove into town to pick it up. It's been sitting in the garage since May, with only a few times being started and backed out of the garage for a spell. So, I thought it would be a good idea to drive it and burn up some of the old gas; it had just under a half a tank left over from this past spring. So, we loaded up the dogs and drove over to Maplewood State Park and spent the afternoon driving around the park. It was pretty well empty, and they are getting ready to close it down for the year, so we were glad we took the time to tour it one last time. We will likely still drive out there with the dogs, but most of it will be inaccessible except by foot. With the chemo, walking is a challenge most days. I get winded after about twenty feet, my neuropathy makes me unstable, and I'm sensitive to the cold; I have to wear gloves to take anything out of the fridge, so any cold-weather hiking/walking will have to wait until I'm recovered from chemo. It was a beautiful drive, and there is still a fair amount of fall foliage, but the trees are becoming bare quickly now. We also saw some swans, one pair with a youngster, a very timid doe, a lot of squirrels, furious song birds migrating through, and one very brave young buck who seemed as curious about us as we were about him. It was a wonderful afternoon, the park was all but deserted, so we didn't have to put the dogs on their leashes when we did stop and walk a bit; with my issues, we just stopped in a remote campground and walked a bit on the road. The dogs, however, ran every which way as they sniffed and explored. It may have been an unproductive day, but I wouldn't change it for anything. |
| Yes, I'm still having some issues with the new medications I was put on starting Monday. One is for neuropathy, and the other is for low potassium levels. I took both, according to directions, and ended up getting sicker than a dog. It was assumed to be the medication for neuropathy, which they had me stop taking. Yesterday, I went in for some fluids via my port and discussed all of this. I was taken off the neuropathy, and that was supposed to solve the problem. I was also told to cut the potassium supplement in half and take half with lunch, the other half with dinner, to make it easier on me. I was also given potassium through my port with the liter of saltwater I was having pumped into me. Today, with my lunch, I took half of a potassium tablet as directed and had to take anti-nausea medication shortly after. This has me wondering which one, or maybe both, made me so sick. I've been doing a bit of research and found some interesting facts about the potassium I was put on. One thing I need to discuss with a different doctor (I'm not trusting the oncologist who prescribed it) is that I shouldn't be taking it with one of the other medications I'm on. I also, because of my throat restrictions, should have been put on the liquid form instead of the huge horse pill. Also, low magnesium levels could be causing my elevated sugar levels and lower potassium levels (according to my labs, my magnesium levels are lower than my potassium levels). Finally, I'm supposed to have my potassium levels checked frequently to ensure I don't raise the level too high, which is more dangerous than too low. I'm not scheduled for another lab for two weeks! So yes, more confusion. I will be getting a second opinion from not just another doctor but from an entirely different health care system (in Fred Sanford's health care system, all the doctors will back the others). For now, it's off of both until I find out more from someone trained and knowledgeable about such things. |
| The title, of course, comes from The Big Lebowski, but what Dhe Dude said seems fitting. I was supposed to have a chemo infusion today, but all that changed when I got sick yesterday evening. Not sick as in a cold or other ailment, but sick from the new medication I was put on yesterday to help with the neuropathy in my hands and feet. The first medication they had me try made me extremely dizzy, and I had to stop taking it for fear of falling all the time. So yesterday, my oncologist prescribed me a different medication that he has had good luck with. I took the prescribed dose yesterday at one in the afternoon after we returned home. By dinner time, the tingling had noticeably let up; it wasn't gone, but it had decreased a lot. I was beginning to think it was going to work, and I wouldn't feel like my feet were constantly asleep. Dinner time rolled around, and I was able to eat an entire enchilada (my wife's own recipe) with all the fixings. It was a bit much, but I did manage to keep it all down and was again happy with the fact that it seemed my eating capacity had increased a bit. After dinner, I took the dogs out and played with them a bit. Bellah loves to retrieve her ball, and Max, being a Husky, loves to play chase. He was excited when I chased him a bit; it's been quite some time since I could, but I soon discovered that running and frolicking isn't the best thing to do right after eating. I didn't get sick, but it didn't settle well on top of my dinner. Anyway, I digress. After we came back in, I relaxed in my recliner, and we turned the television on. I was soon feeling better and enjoying a nice, relaxing evening. But a few hours later, after the time-released neuropathy medication had time to reach full strength, I got sick. I broke out in the sweats, I started feeling nauseous, and I just felt like yuck. I took one of my nausea meds and let it dissolve on my tongue like directed, but despite them working great for the chemo, it didn't do anything. I had to have my wife get me one of the other nausea meds and try and get that down between fits of dry-heaving. I don't like to take that medication because it really messes with my vertigo, but I was desperate. It did the trick, and a half hour after I started heaving, it finally stopped. This morning found myself still feeling pretty lousy, but at least I could drink a little coffee without getting sick. My wife had contacted the infusion center and explained things to them. The doctor figured it was a reaction to the new medication, but wanted me to come in and get checked out. After getting another liter of water pumped into me, I was a bit dehydrated. We discussed the possibility of what had caused me to get sick and agreed, although we can't know for sure, that it's the medication and I shouldn't take any more. She also suspects it's the chemo that has made me so intolerant to many medications. So, for now, I just have to put up with the tingling. Hopefully, after the chemo is done (still two to go), the neuropathy will improve, and I can find a medication to help since it will never go away completely. My infusion was rescheduled for Friday, but my daughter is coming to visit on Sunday, and I have an endoscopy scheduled for Wednesday to get my throat stretched and opened up a bit more, so I don't want to have an infusion until after. The doctor discussed this with my oncologist, who said it would be fine to put it off until my next scheduled infusion in two weeks. So, a bit of a reprise from the chemo, a chance to recover a bit more before the next two, and since I'm already feeling better again, some time to get the rest of the winterization work done before I resume chemo and feel like I'm wading in the river Styx. |
| I had my labs and everything is looking good considering the type of infusions I'm being given, except my potassium was too low; I now get another pill to take. Actually, two more, the other is to counter the neuropathy I have from the chemo. After I met with my oncologist to go over everything, he agreed that I can end my chemo, but it will increase the chance of the cancer returning quite a bit. We discussed things in great detail, and I learned that the type of cancer I have is very aggressive and hard to stop. So, to give me the best chance of survival, I have to take the most aggressive form of chemo, and why I had to have my esophagus removed instead of just the tumorous part. The type of cancer I have, I was told today, would have finished me off in three to six months if left untreated. Why didn't the doctors tell me all this when I was first diagnosed instead of side-stepping so many of my questions? Because they (the medical team) have determined that many patients lose hope and give up fighting if they know all this from the start. I can understand that, but I can't agree with it. I should have been told right from the start how aggressive this cancer is and how devastating the treatment is. If I complete my chemo, I have a 38% chance of being cancer-free five years from now. If I don't, that number drops even more. Not a great outlook, but hey, I'll take every year I can get and hope to be in the 38%. On the plus side of this, however, is that I'm also using amunotherapy, and that increases my percentage quite a bit, if it works for me. This is something new that was published around the time I had my surgery. My labs indicated that my white count was elevated and that the therapy seems to be working. The bottom line, I will be going in for my infusion tomorrow. I want to beat this thing if possible. Because of some of the damage it's doing and how sick it's making me, it won't be a full dose, but instead is reduced to 70%. After I will see how well I handle it, and if possible, I'll suffer through the final infusion in two weeks. We also discussed how bad the neuropathy is and whether it's permanent or not. My oncologist believes it will get better, but it may take six months or more before it does. He also informed me that even after the last infusion, it will get worse for a few months before it starts to heal. He told me that over half of his patients doing the treatments I'm on end up in a wheelchair by the end of the infusions, and only about half of them recover enough to get out of it. But, again, on a positive note, by the lab results and how well I've tolerated things so far, I'm doing better than most, and he thinks I have a better chance of beating this if I complete the treatments, and of being able to lead a somewhat normal life after. All in all, it was a good meeting, but I'm still upset with the information being withheld; I should have been given all the information up front. |
| Another good day and a bit better than yesterday. I woke at three this morning with some abdominal pain. I couldn't get back to sleep, so I decided to start the coffee and my day. I was hungry, so I dropped a couple of toaster-tarts, thinking they'd go nicely with coffee. I haven't had them in many years and was disappointed to discover they no longer put filling between the crusts, they just paint the inside. Since the tarts didn't do anything for me. I enjoyed some mandarin oranges with my coffee and read for a bit before falling back to sleep until ten. Since it was a nice day, my wife and I decided to drive to Detroit Lakes (home to Wee Fest) to enjoy the changing leaves and do some shopping, which burned up the afternoon, getting us home just in time for dinner. Knowing it would be late to cook, we grabbed some frozen fish fillets and chips. I was surprised to be able to eat my fillet and a serving of tortilla chips with cheese and still have room for a second fillet. It may be wishful thinking, but it could be a sign that my stomach capacity is finally starting to increase. Tomorrow I have to be up early to head to Fargo for labs and a meeting with my oncologist, hopefully with good news. |
| Yesterday, I felt a little better; I'm finally recuperating a bit from my last chemo infusion, and it's just in time for the next one, scheduled for Tuesday. From experience, I know it will be twice as bad as the last one. But, I won't be doing any further chemo until after I'm tested to see if there's even any reason to do chemo. I haven't been tested for cancer since June, six chemo infusions and one surgery ago. I'll see my oncologist on Monday and discuss this with him. He has me scheduled for a CT scan in November to look and see if I'm cancer-free or not. I've been told that most cancer centers look at various times throughout the process to determine if more infusions are needed, as well as the strength of the infusions, and how often the infusions should be. Much of my research also indicates that this is better than my oncologist's plan of four infusions, surgery, and then four more without a single test to see if there's even any cancer left to kill. Another issue is insurance. I'm currently covered through my wife's insurance from work, but it's expensive, and there's a rather big copay that will start again with the new year. I also have my VA medical that I can switch over to, so we can save what my coverage costs and avoid another ten-grand copay. It would also mean switching to a cancer center in Fergus Falls, which is quite a bit closer than Fargo. There's a lot to consider, a lot to discuss, and possibly opinions from another oncologist. But, I fear that if I continue the chemo, the damage it's doing may very likely become irreversible, meaning loss of quality of life and the ability to do many of the things I enjoy. But, on the flip side, if I don't stop the cancer, quality of life isn't the only thing I'll lose. |
| Today was a bit rough. The chemo has me so wiped out that I'm having difficulty recovering from the effects of the anesthesia yesterday. I'm still coughing up a bit of blood from having my throat stretched (the chemo thins my blood, so I bleed very easily), and today my sinuses started to bleed off and on for no reason other than it's a side effect of the infusions. I was also pretty dehydrated this morning and woke with cramping and nausea at three this morning. But I was able to get into the local hospital that has a satellite cancer center from the one I go to in Fargo to get a liter of fluid pumped into me, along with some medications to help with the other side effects. The nausea is again under control, my sinuses have stopped bleeding, and I'm feeling a lot better after sleeping most of the afternoon. This morning, I was having trouble buttoning my shirt, and the tingling in my feet made it difficult to walk, but just a short time ago I took the dogs out and played with them for a little bit. I managed a few throws of the ball for Bellah and chased Max a little before I became winded and needed to come back inside. Luckily, they pick up on how I'm doing and let me know it was time to quit and come back in. While at the local hospital today, I did speak with a couple of the nurses about the upcoming infusion I'm scheduled for next Tuesday and how I was putting it on hold until after I talked to my oncologist and had some tests run to see if there's even any cancer let to kill. As it turned out, a different oncologist was at the hospital today (mine refuses to come here, I have to go to him) and they had me talk with him. He was surprised they didn't test for cancer after my surgery. In fact, he thought it a good idea not to take any more infusions until after I've been tested. He also said he would consult with my oncologist, whom he works with quite often, to see why things got messed up, and I wasn't scanned after surgery. That is one of the problems I'm having with our local medical facility; it seems like the right hand doesn't know what the left is doing, things get lost in translation, and I'm thinking of dropping all of them. Don't get me wrong, the doctors are great, but the system they work under is flawed and messing things up. For example, I was supposed to get a liter of saline infused on Monday, but somehow the orders got lost. I was finally able to get orders for an infusion today and set up a schedule for when I can go in for future ones; last week, I had the physician's assistant contact my oncologist, who had wanted me to be able to go in for fluids as needed, but this week the order had been removed. By who? Nobody seems to know. I will meet with my oncologist next Monday and see what he has to say, but if it's not in line with what I've researched and talked about with other doctors, I'll be looking for a new oncologist for a second opinion. Right now, I'm giving serious thought to see if I can switch over to the cancer center in Fergus Falls through the VA. |
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As always, I'm praying for you and sending wishes for a peaceful recovery in time for the new year!
