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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. |
| 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! |
| As I recover, I find the biggest challenge is eating. With liquids, I can consume about a cup, but I have to take little sips and space them out. Solid foods, or actually soft and semi-liquid foods, I can eat about a half cup, and then I'm full. The problem arises after I eat, and my stomach starts to produce acid. The acid makes me overfull and I find myself spitting up like a baby, not to mention the acid reflux. I have my post-op check-up on Wednesday and will seek information and a solution when I talk to the surgeon. |
| Because of the procedure I recently had done, I have to sleep with my head and shoulders elevated at least 30o. I purhased a wedge to do this at home so I could sleep once again in my own bed, with my wife. But, since I've been home, I've yet to sleep in my bed. I try, but after a while it's just no use. So I get up and retire to my recliner, tip it back, and sleep well. Last night I finally fell asleep and slept soundly in my own bed. It was only for a couple of hours, but it was in my bed. I tried to fall back into a nice slumber, but I couldn't. So, I retired to my chair and fell back to sleep a short time after and did not wake again until eight this morning. |
| There isn't much to write about today, as there haven't been many changes from yesterday. One thing, however, is that I did not wake at three-thirty but instead slept through until five-thirty; five hours of uninterrupted sleep. My wife and I took the dogs to the state park and let them play in the water and run a bit. I would guess it's about one hundred yards from where we park to the lake shore, so it was a nice hike for me. It was great getting out in the fresh air, despite the cool temperature and cold wind today. I'm working on getting my strength back, and I know it's going to take some time; one day at a time. |
| With the removal of my esophagus, I find myself trying to adapt to a new life. For example, I cannot eat very much at one sitting; about a cup. For now, the foods need to be moist and smooth-textured. I can swallow tablet-type pills, but it's with some difficulty (I'm currently cutting them in half and putting them in a spoon of pudding. In time, I will be able to eat a bit more, but I don't know how much my stomach capacity will increase. I will also, in time, be able to eat most any type of food, as long as it's well chewed and in smaller pieces. Another change is how I sleep. From the day of my surgery till the end of my days, I have to elevate my head and shoulders at least thirty percent. Currently, I still need to be closer to a forty-five-degree angle. My first night home, I just slept in my recliner. The wedge I had my wife order arrived yesterday, and along with one we got from my sister in law, we can adjust the angle. Last night was the first night in over two weeks that I was able to sleep in my own bed. Well, from around eleven until two-thirty: blood draw time for the daily labs. That's one change I'm eager to overcome: getting woke up so much during the night. Now, it just happens out of habit, and I'm hoping I can change that routine and sleep through the night soon. I have a follow-up with the surgeon next week as well as an appointment with the oncologist to find out when I return to my next four chemo infusions. He also wants to start me on immunotherapy, but I don't know if I can do that until after chemo or during (I have some research to do before the appointment). For now, it's a bit difficult, the surgery left me with a lot of flem and coughing, which causes me to have acid reflux and often forces some of the food I've managed to eat back out. I am drinking nutritional drinks to stay healthy until I can reach a point of eating enough food and types to get my nutritional needs met. Time, it's all going to be a slow and timely process of adjusting and healing, as well as adjusting to the life changes. Unfortunately, I've never mastered patients... |
| I had my esophagus removed on August 21, with few problems. It took an hour longer because my stomach didn't want to stretch: I don't blame it. During my stay in the ICU, I went into Atrial fibrillation because of the intensity of the surgery, so I was put on a medication to stabalize my heart beat, which it did after a few days. I spent two weeks in the hospital healing before being discharged yesterday. I'm home now, feeling pretty good considering the size of the incision in my abdomin and neck (they had to be larg enough for the surgeon to use his hands). I went ten days without any food, but I was put on IV nutrition. Now I'm home learning to eat all over. Soft moist foods like pudding and mashed potatoes, as well as a bland diet for a few days as my system gets used to food again. But the good news is, I'll eventually be eating all my favorite foods again, it's just a matter of time. On the downside, however, I now have less stomach to put that food into. I currently can eat about a cup of food, and that's pushing it. But it's getting better fairly quickly and I should be able to increase that amount. It's much like having one stomach banded, you have to eat nutrient rich foods or a supliment, and instead of two or three meals a day, I have to eat five or six. Also, I can't drink very much when I eat because it will fill me up and I won't have room for the food. I started with some vegetable broth four days ago, about one fourth cup. Two days ago I consumed a half a cup of broth, and yesterday before leaving the hospital, I had three quarters of a cup of cream of potato soup. After getting home I also enjoyed about a half cup of coffee and for supper ate almost a cup of mashed potatoes. Today went pretty good, feeling more of my old self and have been up for most of the day. I don't know how much I'll be around, however, I have follow up appointments with the surgeon, I have appointments with the oncolgist to find out when I restart chemo, and I have to set up an appointment with a cardiologis to get off this heart medication safely. I will pop in when I can to keep everyone updated. |
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