%%USERNAME%%    %%ACCWORDS%% %%ONOFF%% |
My thoughts released; a mind set free |
|
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. |
| 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. |
| At least I'm hoping to get back on track after missing a few of my badges yesterday. I did log in, but that's all I managed to get done here. Shortly after waking up, I had to get ready to have an endoscopy of my throat done in Fargo, about an hour and a half if traffic and road construction don't add another half hour. Yesterday, neither delayed us, so we got to the hospital early, which turned out to be a good thing. I couldn't eat anything, but my wife was hungry, so we went to the little cafe they have in the hospital. While there, we encountered my surgeon, who would be doing the procedure after he had eaten lunch. We ended up having a nice consultation, discussed my progress, and talked about the problem I was having swallowing; a free meeting with a surgeon? Who would have guessed it? After the procedure, he explained that the problem was fairly common during the healing process and that many patients have to return at least once, usually two or three times after the surgery, to have the junction of the stomach and throat stretched. I fell into that group and had to have it stretched, which he did during the procedure. He also told me that it's likely to become restricted again and that I may have to have it stretched again. In my own research, I've discovered that this may be something I have to have done once or twice a year for the rest of the years I have left. After the procedure, I had to take care of some VA issues while in Fargo. Anyone who has dealt with the VA knows that nothing is quick with them, so it was late afternoon before we returned home. Luckily, I had brought some protein-rich snacks along for myself since I couldn't eat anything before. By the time we did get home, I was wiped out and fell asleep in my chair, and didn't wake up until shortly before bedtime. I did enjoy a small piece of my wife's birthday cake with a scoop of ice cream before bed. Yes, I slept for three hours, ate cake and ice cream, then turned in and slept most of the night, but woke too damn early. But these early morning hours give me some time to get back on track for my badges. |
| A busy day, but a good day. I had a change in my appointment time with the cardiologist from late afternoon to late morning, but things worked out, and I was able to make the new time. The monitor I wore for two weeks indicated that I did go into Afib a few times, but only for less than a minute each time, except one. That one time was under some stress, and I stayed in Afib for just over an hour before my heart returned to normal. She is not concerned and doesn't want me on any medications, just to go back in six weeks to have another EKG and see how things are going. She agrees, the Afib is likely related to my still healing from surgery and being back on chemo. She also agrees, if the oncologist does, that I should take a break from chemo and was a bit surprised I was back on it this soon after such an in-depth surgery. After we finished up there, I stopped by the VA clinic and dropped off some paperwork, then it was back home, running a bit late, for my wife's physical therapy. After she was done we stopped at the VA center to update some paperwork and see where everything is at with the claim I have on file (it seems I was exposed to contaminated water). The results were back; I do qualify for some disability based on both the contaminations and some of the duties I performed. It's not like a huge payout, but every little bit helps. By the time we got back home, dinner was ready (a roast in the instapot. I was able to eat some potatoes and gravy, but nothing else would go down; there was too much restriction in the surgical site of my throat. Thankfully, I go to Fargo tomorrow to talk with the surgeon and have my throat scoped again. From what we've discussed with doctors, it's likely also a result of the chemo causing swelling in the area of the surgery. Next Monday, I meet with the oncologist to discuss all of this, request being tested and having a scan done to see if there's even any cancer left to kill off (why do chemo if it's already in remission?), and to discuss the next year of immunology and other options. So yeah, all in all, it's been a good day except for not being able to eat without choking and still having a lot of pain problems from the chemo. Tomorrow should fix the choking part; I'm sure he'll stretch the area while he's in there looking around. Hopefully it won't be much longer and I'll start to recover a bit from the last chemo infusion and some of the other miseries will also fall by the roadside. |
| Four infusions before surgery, then four more after. That was the plan back in June when all this started. However, from the start, things began to change. Originally, it was six infusions, then a break for surgery. After surgery, I would have two more infusions just to ensure all the cancer was killed off. However, even though I was handling the chemo infusions better than most, my oncologist decided to do four, then surgery, then four more infusions, as well as starting immunology. This time around, the infusions are taking an intense toll on my well-being. With my limited food and water intake, I cannot maintain my nutrition. I almost passed out today from abdominal cramping and pain, and I'm finding it more and more difficult to hold on to what little food I do eat. This has led to more research and a lot more questions, like: Why did I only need two infusions after surgery, but now it's four? My surgeon told me I was cancer-free after surgery, and that a few chemo infusions were just to ensure any stray cancer cells in my system would be destroyed. Also, the immunology infusions by themselves could destroy any, if there are any, rogue cancer cells. Another question is why my oncologist isn't doing a CT scan until after the last infusion. Shouldn't he do a scan now to see if there's even any cancer to kill off? Because the chemo is taking a heavy toll, and because I want answers, I have decided to stop my chemo infusions for the time being. I will meet with and discuss this with my oncologist one week from tomorrow. I want to be scanned and tested to see if I even need any more chemo before proceeding. However, since I already started immunology treatments, I will continue with them. I will also be looking for another oncologist since the research indicated there were several different treatment plans and surgeries that should have been discussed with my wife and me back in June. Knowing now what I didn't know then, I do believe that my team did make the best decisions for the course of treatment they put me on, but I also believe they should have discussed options and why they chose the path they did. Tomorrow I'm going to see a cardiologist about the Afib I had while in the hospital. It stopped before I was discharged, but after the last infusion, I'm having some chest discomfort as well as shortness of breath, at times. I have been monitoring my pulse and blood pressure through the local hospital, and they're staying normal for the most part. Most likely the problem is dehydration, and going in to get rehydrated by IV a few times a week seems to have fixed the problems, but they still insist I see a cardiologist. On Tuesday, I go back to see my surgeon and have a scope put down my throat to see why I'm having problems swallowing again. It's restricted, and sometimes I cannot swallow anything more than liquid. Again, the health care team here at the local hospital believes it's from the chemo causing problems with the surgical site in my throat, but they want me to do a follow-up with the surgeon to ensure it's not anything more. Also, he can stretch the tissue and make it easier to swallow while looking things over. It's a lot going on, and some important decisions to make, so it's time to gather information, get second opinions, and hopefully make the best decissions for moving forward. |
| I had a rough night last night, waking often with a lot of phlegm and coughing. Why? A side effect of the immunotherapy, I'm told. I also just felt off today, and the chemo brain fog was worse. But I went into the hospital and had an infusion of sugar water this afternoon and it seems to be helping a little. That's the probem, currently, I cannot eat or drink enough to meet my needs. If I drink more, there's no room for food and my nutrition drops, but if I eat enough through the day to hit close to the mark on nutrition, I come up way short on my water. So, going in for IVs through the week seems to be the most likely solution for now. I have to see my cardiologist on Monday and hopefully it's good news, then on Tuesday I go to see my surgeon and have an edoscopy down to see why I'm having difficulties swallowing sometimes. On Sednesday I go get another bag of water infused (and possibly one on Monday if needed). Sometimes it seems even the weather affects how I'm feeling, and the immunology side effects aren't helping. But my oncologist told me to try Mucinex for the phlem and hopefully that helps. Anyway, today is winding down and here's hoping for a good, restful night and a better day tomorrow. |
| I had a pretty productive day yesterday, considering I felt like three-day-old road-kill. Okay, maybe not quite that bad. With the temperature rising into the fifties (sixty today) and down in the fourties at night, it seems like a good time to remove the window AC units. My wife assisted, of course, but it was still a pretty good workout for me. We also started getting ready for the snow season by putting away most of the summer items and taking them to storage. After, it was a drive into town to pick up a few things and fill our five-gallon water bottles (our water here is safe to drink, but has a lot of iron in it). I've been trying to maintain my strength and stamina as much as possible throughout the treatments and surgery. I did pretty well through the first four chemo infusions, but the last one did take me down some. Of course, I had time to recover before my surgery and was doing pretty well again until they started cutting. It took a week to gain the ability to get up and move, sit in a chair, etc... Even worse, I was unable to eat or drink anything after the surgery for two weeks. Actually, it was eleven days before I could suck on ice chips, and by thirteen days, I was able to sip on a bit of broth. This lack of nutrition left me pretty weak, but once things got straightened out and they started nourishing me through an IV, some of my strength returned. Some, but not all. Now, it's back to the infusions, which are taking a toll once again on my strength. I also struggle some days to bring in enough nutrition, protein, and calories. Despite all this, I've managed to do pretty well with weight loss and muscle loss. With two infusions left, I'm hoping that I can maintain the muscle I have; I set up a weight bench and am hoping to have the energy to work out a bit each day, as well as trying to walk and do as much around here as I can. Once the last infusion is done, I'll have the winter to get my self back into shape. |
| I have to go back to Fargo next week to have another endoscopy of my throat to ensure everything's healing correctly. This far out from surgery, it should be pretty well healed, just some scar tissue to deal with. But this past Saturday, I found myself going from eating normally (normal for me) to not being able to swallow come dinner time. I couldn't even get liquid to go down; everything was stuck in the area of the surgery. I talked to the doctor about it on Monday when I went in for my infusion, and we both agreed that it was likely a reaction to something I ate or drank, but she wants me to have my surgeon look just in case it's something else. What else could it be? There's a slight risk of my own immune system attacking my own body, especially at surgical sites and any injured areas, while doing the immunology treatments. Since all my labs looked good, she doesn't think it is, but better safe than sorry. Of course, if it were a reaction to food or drink, that could be just as serious because it may indicate an allergic reaction, one bad enough to close off my throat. Since I log everything I eat to keep track of my daily nutrition and calorie intake, I can look and see what I consumed before the problem, and if it happens again, have a pretty good idea of what caused it. |
| I was prescribed eight rounds of intensive chemo, four before surgery and four after. I divided my treatment plan into three parts. Part one, four chemo infusions, part two, intensive surgery (I was in for six and a half hours instead of the anticipated four), and now part three, four more doses of poison chemo infusions. However, a part four has been added, a year of immunology that was started with my last infusion and will continue monthly for a year. Today I had my second infusion of the last four, so only two are left. This time around, however, is twice as rough as the first round. Already, my taste is shot, and the swelling in my legs is back. My jaw hurts when I chew, and I'm back to using nausea meds. The worst this time around is the neuropathy. It is worse in my hands and feet, and cold intensifies the tingling/sleeping feeling into micro-lightning bolts shooting from my fingertips up into my hands. I have to wear gloves to handle anything cold (around fifty degrees). I also discovered last night, while sipping on a cold glass of water, that it's also present in my lips, mouth, and throat. One more month; my third infusion in two weeks, and the last two weeks after that. But to look that far ahead with the side effects already this bad is downright depressing. So I'm trying to focus on one day at a time. |
| I'm learning with each new day how to adjust my eating habits to compensate for my surgery. It's a big change for someone who gulped down food with little chewing most of my life. But now, I have to chew everything very fine, take small bites, and eat slowly; I used to be the first one done, now I'm the last. The most difficult for me is the amount I can eat at one sitting and how to tell when I'm full. Everything is different now that they removed my esophagus and the very top of the stomach, then pulled and stretched my stomach up and attached it just below my bronchial tubes. I get hungry, but I don't get full. Instead, the food just fills up my modified stomach until it's at the top, resulting in coughing, gag reflex, and spitting up like a baby. I have it figured out to about a cup of food per sitting, but it also depends on the food. Soft and liquid foods allow me to eat a bit more if I eat them very slowly. Solid foods fill me up quicker, no matter how long I take to consume them. I've been doing pretty good, but on days like today, I slip. I had an infusion today, starting with a blood draw at seven-thirty, consulting with the doctor an hour later, and then the infusions (there are four most sessions, but once a month a fifth is added in) began around a quarter to nine and go until one or two, depending on the fifth chemical/IV. I don't eat much while they are pumping me full of poison; I just snack a bit. After I get home, I relax in my comfortable chair after giving the dogs some attention, and wait for dinner. Tonight I was starving, and we decided on grilled cheese sandwiches with tomato soup. My wife dished me up a cup of soup and one grilled cheese made with two kinds of cheese. We figured I might manage half the sandwich and maybe a fourth cup of soup, but like I said, I was ravaged. So, once half the sandwich and soup were gone, I should have just stopped. I had eaten slowly and I didn't feel the food getting high up my stomach, so I ate a bit more, and when things seemed alright, I ate a bit more. I ate the entire sandwich and cup of soup, but shortly after, I knew I shouldn't have. I walked around a bit and did everything I knew of to get the food to settle down more, but nothing worked, and like a baby that eats too fast or too much, I've been spitting up and feeling miserable. It's finally starting to settle... |
| My wife's cousin and his wife came over on Friday from the opposite side of the state to visit for a few days before going over to the state park to camp for a few days. They brought garden-fresh vegetables and some beef raised by some friends; some thick-cut ribeye steaks were planned for dinner last night. Now, yesterday I was feeling a bit off, almost like I may be coming down with a cold, but other than that, I was doing great. I had a cheese and mushroom omelet (one egg) for breakfast. I had a protein bar and shake for lunch, and snacked on various leftovers through the early afternoon. But I stopped eating anything a couple of hours before dinner to ensure I would have as much room as possible for dinner. Dinner was finally ready, I was starved, and the food looked and smelled fabulous. I have been craving a nice steak since my surgery, and now I was finally able to eat it, and I was looking forward to savoring every bite I could eat. (I'm still limited to about a cup of food per sitting). We also had fresh vegetables from their garden and baked potatoes with all the fixings. With my limited capacity, I just had a chunk of steak cut off from my wife's while it was still rare enough for me, since she likes hers about medium. I also took a few different vegetables to dip and enjoy, as well as about a quarter of a baked potato. I knew I'd likely not be able to eat all of it, but I thought I'd give it a hell of a shot even if it left me feeling a bit miserable for a while after. But, I was buncoed with the first bite of food; it did not go down. It stopped at the point of the surgery, where my stomach was attached to my throat. I could not get any food, no matter how soft, how well chewed, or even water to pass down my throat. Not only was I upset about this new development, but here's this plate with this yummy food, and I cannot eat it! Eventually, a few hours later, I was able to sip some water and get it down, and shortly before bed, I managed a pudding cup. Of course, eating within a couple of hours of bed means reflux, but I risked it because I was starving and so thirsty I knew I wouldn't sleep anyway. Today I can eat again, but there is still some restriction when I swallow. I'm logging all my foods to track my calorie intake (I have a difficult time getting even close to my daily calorie intake and have to watch my nutrients to make sure I get enough), so I was able to look at what I had consumed prior and compare it to other days when the same thing has happened. I'm hoping we can find something that is causing this, and I will be talking to the doctor tomorrow about this, as well as how painful it is after eating when the food moves through the intestines. Is this temporary or long-term? So far, the question has not been answered. My surgeon said that some people can eat almost normally within a few months, while others may take up to a year. But at the same time, he's also telling me that I'll need to eat five or six meals a day to get enough nutrition and that some of his patients have to go in for IVs to ensure they don't dehydrate (he's recommending I go in at least once a week, but twice would be better. I'm sure one day down the road, after the chemo and immunology treatments are over, I'll find myself eating more per sitting, drinking enough water, and being able to maintain my nutritional needs. At that point, I can look back and know my worries and concerns about living a normal life after cancer were unfounded. But until then, not knowing is the hardest part. |
| My last entry was a bit negative; some days are like that. I do try to maintain a positive outlook, but it's not always easy with all the changes I'm trying to adapt to. Feeling miserable is tough, but I know that will pass after the chemo is done. It may take most of the winter to recover, but that's fine with me. The changes due to the surgery, however, will never go back to normal, and that's where it gets difficult to stay positive. It would probably help to know someone who has gone through this same form of cancer, the same treatments, and the same surgery. Did life return to some form of normal? How long did it take? I mostly take each day as it comes, often going to bed with hopes that the morning will bring a better day than the one ending. Sometimes it does, other times it's just the same shit, different day, and occasionally the new day is worse than the previous. I am trying to find solutions to the problems. Nutrition is a big issue right now as a result of not being able to eat enough in a day to meet my calorie needs or my nutritional needs. I do take a daily vitamin and am looking at supplements, but with the chemo, nothing tastes like it's supposed to, and it's going to get worse with each infusion. I'm also having problems drinking enough water in a day to prevent dehydration. If I drink enough to hydrate, there's no room for food, and if I eat enough, there's no room to drink much. Right now, it's looking like I'll have to go to the hospital cancer center at least once a week to get an IV of fluid pumped into me. That means at least once a week, and more likely twice a week, I get to sit in a little room and wait for an IV bag to drip. I know that doesn't sound all that bad, but understand that I have a fear of hospitals, and my recent surgery and two-week stay has only made it worse. I still wake some nights from nightmares about being in the hospital. I recently told my daughter that if I had to do this all over, I'd request them to put me into a medically induced coma and not wake me until after the worst of the chemo has passed. As it stands, I'm just taking each day as it comes and focusing on being done with the chemo by the first part of November. Maybe I'll have enough strength and my taste will have recovered enough to enjoy Thanksgiving. I know I'll have a lot to be thankful for. |
| I woke early and couldn't get back to sleep, so here I am. Things are about the same; I'm still struggling to get enough nutrition. I'm also having a lot of abdominal pain and will talk to the doctor about it on Monday when I go in for my next infusion. We finally have fall-like temperatures, which is fine by me. I was having a lot of problems with the heat, but I'm doing better with the cooler temps. Knowing how rough I'm feeling after the last infusion, I've been trying to enjoy time at the park with the dogs, doing a little visiting, and doing my best to get things ready for winter. I know that after Monday's infusion, I won't be up to doing very much. This round of chemo is really taking its toll on me, both physically and emotionally. In total, I'm supposed to have eight rounds of chemo; four before surgery and four after. I managed the first four, but number four was tough. I survived the surgery, which was even tougher, and the fifth infusion, which took a pretty big toll. I'm hopeful the next infusion will go well, but I also know that it's going to be rougher than the last; each round is. I try not to think about it, but times like now, when I wake early, I find myself with too much time and find myself wondering how I'll manage through three more infusions. |
| Eight days, or about a week after my last entry, and things are going well. Well, as well as can be expected. We've been having summer weather so far and taking advantage of the warmth, sunshine, and opportunity to spend more time outdoors. Usually, we take a nice country drive to enjoy the fall colors, but we plan it so we end up at one of the two state parks we live close to. We bring the two dogs, and with it being late in the year, we can usually find a spot where the dogs can run leash-free for a while, usually by the lake or the river, so they can enjoy the water. Knowing I was going to restart my chemo infusions on Monday, September 29, I wanted to take advantage of the time, knowing once the infusions started again, I wouldn't feel the best. So, I've been out visiting, celebrating my mother-in-law's 91st birthday, and just enjoying the sunshine and fresh air. So far, the effects of the chemo aren't too bad: tiredness and disequilibrium. I've also had some issues with feeling queasy and nauseous, mostly from being so dizzy. But the meds they gave me help, and I'm pushing through. The biggest problem now is my inability to eat very much, which makes it difficult to meet my daily nutritional needs, even with supplements. But I'm doing pretty well according to my last set of lab tests. Protein is the biggest issue, since the chemo wipes out my blood counts so much. I'm still experimenting with ways to increase my protein levels. |
| Four days this time around; I will not use that for my title this time around. I've been staying busy and trying to enjoy the days knowing that I will soon be feeling the effects of chemo again; I restart on Monday. I am recovering well and adjusting to the changes I've had to make. I sleep all night, most nights in my bed again, but still some mornings around the time they would shatter my slumber in the hospital. Eating is still a challenge, but it's getting better. It seems foods I haven't eaten since before the surgery are a bit difficult the first time, but then they do better. I've discovered that if it's something I haven't eaten since surgery, it's best to take a very small amount the first time. After that first reintroduction, it's fine. The other problem is the amount I can eat. I have always had a very healthy appetite and enjoy eating. I still enjoy eating, and I still have the appetite, but now I have very little capacity in my stomach; it's kind of like being banded. I'm doing well to eat about a cup of food per sitting. This results in my not being able to eat enough food to maintain my nutritional needs without supplements. I'm also coming up way shy on how much water/liquids I can drink throughout the day, and I'm always shy on my proteins. Currently, I'm coming close, and since I'm not very active since surgery, I'm probably doing fine. But Monday I restart my chemo, and I will need to increase my proteins and iron to keep my blood counts up. It has me a bit concerned as well as my anxieties flaring. But, I know I'll find a way to get through. I have four chemo sessions left, and then I'm done with them. But, they are also going to start immunology on Monday and I don't know what kind of side effects that will add or for how long I'll be doing them. I do know I'm eager and ready to be done with the treatments. I should be done with chemo around the tenth of November, so I may actually be able to taste Thanksgiving dinner (and hopefully can enjoy a bit more than a cup of food per sitting). If not, well, Christmas is just around the corner. I'll have the winter to recover from the chemo, and I'm hopeful that by spring, life can get as much back to normal as is possible. |
My last entry, "Not Three Days"  , indicated that three days had passed without an entry, so it's only fitting to title this entry, Not Six Days.Almost a week, and still not a lot to blite (blog-write). I'm healing and doing well, but still adjusting to all the changes. I'm doing better with eating, but I'm still limited to about a cup or less of food. I know my capacity will increase somewhat, but I will never be able to eat a regular-sized meal. I was informed I should eat about six times a day. The problem comes from how long it takes for me to pass food out of my stomach. Some soft foods that are liquidy pass quite soon, in an hour or less. But other foods can take two or three hours. This means I'm full and cannot eat until the food has passed. It makes it difficult to eat five or six times a day. I am tracking my calories and nutrition and am doing pretty well considering the small amounts I eat. Since I went into Afib in the hospital after surgery, I was supposed to be monitored after my discharge. But, somewhere, some wires got crossed, and I never even talked to the cardiologist except when I was first put on some nasty kind of medicine. I was subject to at least a dozen unwanted side effects from the medication, and since I had come out of Afib before leaving the hospital, didn't think I needed to be on the medication. Even my surgeon said that the cardiologist would likely take me off the medication and just monitor me for a while, since I had no history of heart problems before the surgery. But, I didn't have a cardiologist, couldn't get any answers, and in my frustration, took myself off the medication while I tried to get set up with a monitor through the VA. Last week (two weeks out of the hospital), I finally got an at-home monitor to see how my ticker's doing that I'll wear till the end of the month. I have not had any indication of Afib since I was in the hospital; my pulse is back down to normal, and my blood pressure is doing great. I resume my chemo on the twenty-ninth and will start immunotherapy at the same time. For now, I'm just enjoying my days knowing that a couple more months of hell will be coming soon. |
View Portfolio
Visit Notebook
Send Gift Points
Awards
Badges
Send Email
Community Newsfeed
General Discussion
Sponsored Items
Book of Trinkets
Static Items
Books
Groups
Interactive Stories
Audio
Campfire Creatives
Community Notes
Crossword Puzzles
Documents
Folders
Images
In & Outs
Madlibs
Photo Albums
Polls
Product Reviews
Quizzes
Survey Forms
Web Pages
Word Searches
