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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. |
| 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. |
| Three days? Already? It doesn't seem possible that three days have passed since my last entry. Not much is happening, so not much to update. I've been tired, still recovering from surgery, I suppose, and with my limited eating capacity, I tend to come up a few hundred calories shy each day. But it's slowly getting better. We did go for a relaxing drive a few days ago, and yesterday we took the dogs over to Glendalough State Park. Today I went into the hospital to have my port serviced and my vitals checked. Everything is looking good. Tomorrow I'm off to the VA clinic in Fergus Falls to get my heart monitor that I should have had when I was discharged after surgery. I wasn't in the VA hospital for surgery, but am going to have them monitor my heart to see that I'm no longer in A-fib. (I know I'm not, but my doctors are all concerned) |
| Today is one of those rainy, gray, gloomy days. At least it's cooler, but the humidity is in the 80s. I had another milestone last night, I slept in my bed all night. I did wake up around three (programmed from my hospital stay), but after using the bathroom I was able to suggle back into bed and sleep until about a quarter to seven. It boomed and thundered here this morning with some heavy rain. It's also stayed gray and dismal outside with scattered showers and drizzle throughout the day. But, that's alright, it means I'm stuck inside getting some much-needed rest after going so much the last four days. |
| Progressing, but slowly, of course, it's only been three weeks since the surgery, so I guess I'm doing well. On Tuesday, I spent the afternoon visiting my mother-in-law. On Wednesday, I had a morning appointment and an afternoon appointment in Fargo, so I was up early and didn't get home until late afternoon. Today I was up around seven, and this afternoon we took a road trip over to Maple Wood State Park. It was a nice, relaxing drive through the park, and it was nice to be able to drive again. We stopped for a bit and walked a little while; the dogs ran and frolicked. However, walking on grass and uneven ground remains quite challenging. Oh, and today was the first day I was able to eat without any reflux. I'm still only able to eat small amounts, but at least I can enjoy the small amounts I'm eating. Now it's time for a movie with my wife. |
| Tomorrow will be one week out of the hospital. Today I met with the surgeon for my check-up, and everything is on track and looking good. I do have to go back in for a follow-up in a year unless some problem arises. After I met with my oncologist and we discussed the final four rounds of chemo. We were in agreement to set a date of 9/29 to start them along with ammunotherapy. However, he also said if I'm not feeling I'm ready yet, we could push them back a couple of weeks more. That's two more months of chemo, and then I'm done with it. It's going to be rough, but just a couple more months of hell, and then I can start recovering and hopefully be done with this foolishness! |
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