callmetj's InkSpot
Perpetual Ruminations
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.
#1098053
| 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. |
#1097804
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. |
#1097433
| 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) |
#1097236
| 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. |
#1097147
| 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. |
#1097081
| 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! |
#1096963
| 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. |
#1096878
| 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. |
#1096803
| 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. |
#1096680
| 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... |
#1096652
| 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. |
#1095790
| Good morning, TJ has asked me to up date you on how he's doing. The surgery went well, but lasted a lot longer then they had expected.They were able to remove the tumor and all of the lymph nodes. There was no sign of cancer in the stomach,none that they seen anyway. Waiting on the results from the biopsies to make sure it's all gone. Right now he is in a lot of pain and trying hard to hang on to his positive attitude. He is in ICU until Monday and then hoping to be moved to a regular room. Once he's there he will be able to visit with you all. Thank you all for your thoughts and prayers, Mrs. TJ |
#1095791
| Good morning, TJ has asked me to up date you on how he's doing. The surgery went well, but lasted a lot longer then they had expected.They were able to remove the tumor and all of the lymph nodes. There was no sign of cancer in the stomach,none that they seen anyway. Waiting on the results from the biopsies to make sure it's all gone. Right now he is in a lot of pain and trying hard to hang on to his positive attitude. He is in ICU until Monday and then hoping to be moved to a regular room. Once he's there he will be able to visit with you all. Thank you all for your thoughts and prayers, Mrs. TJ |
#1095792
| Good morning, TJ has asked me to up date you on how he's doing. The surgery went well, but lasted a lot longer then they had expected.They were able to remove the tumor and all of the lymph nodes. There was no sign of cancer in the stomach,none that they seen anyway. Waiting on the results from the biopsies to make sure it's all gone. Right now he is in a lot of pain and trying hard to hang on to his positive attitude. He is in ICU until Monday and then hoping to be moved to a regular room. Once he's there he will be able to visit with you all. Thank you all for your thoughts and prayers, Mrs. TJ |
#1095661
| My last infusion was on July 14 and it was a rough one. One side effect it left me with was watering eyes, trying to read anything has been pretty difficult as a result. Another side effect is pins and needles in my hands and feet, especially in my fingers, making it difficult to type. I've also been very tired and the heat and humidity haven't helped much. I have surgery in the morning which also has my anxieties flaring. So, I haven't been in here for some time. But, in general, I'm doing great, better than expected. Now I'll be in the hospital for at least a week and possibly up to two weeks, depending on how fast I heal. I'm going to try and heal up as quickly as possible, but other than following the doctor's instructions and staying positive, there isn't much I can do to speed up the process. I'm not sure how soon I'll be up to logging in here again, but I will try and post an update about how the surgery turns out as soon as I'm up to it. I do have a very good surgeon, and he's done quite a few of these. For now, it's off to rest up and get ready. I'm scheduled for first thing in the morning and have to be in Fargo by five o'clock. That means up around two and on the road about three. |
#1093618
| This last infusion is taking a toll. Usually by now I'm starting to feel better, but not this time. If anything I'm feeling more run down and I can't seem to shake this brain fog. Hopefully tomorrow will be a bit better. Despite how I'm feeling I made it to my appointment with Veterans Services and am signed up for some help. I should find out in a couple weeks what all they can do to help out. I also was gifted a couple of fuel cards and gift certificates for Walmart, both of which will help a lot. We got the car back from the garage, the alternator was fine but the belt was slipping, more good news and a lot cheaper fix. Last week it seemed anything that could go wrong would, but this week things seem to be working out nicely. Now, if I can just get past this fatigue and foggy head by the weekend so I can fully enjoy a few days of camping. |
#1093551
| Back when all of this started, I had an exploratory surgery of my abdomen to look for any signs that the cancer had spread. Thankfully it had not and was still in stage two. But, the surgeon did find a very small growth on the outside of my stomach that he removed and sent in for analysis. He did not think it was cancerous, but the lab results showed it may be. So, he sent the biopsy off to the Mayo Clinic. They determined it wasn't cancer, but since there were now two conflicting results, it was sent to the University of Michigan and was determined to be a rare form of cancer. Luckily this was discovered in stage one, was about the size of a period, and was removed. If it had not been discovered it wouldn't have shown any signs until it penetrated the stomach wall, and by that time, would have spread throughout my abdomen. So, now I'm looking at my esophageal cancer as possibly being a life saving illness; a blessing in disguise. |
#1093497
| Just got home from having the pump removed, this session of chemo is complete. I talked with my oncologist yesterday and gave him a rundown of the side effects; all normal and in my case, less severe than most people. He did inform me that my infusions are very intense and that I'm handling them better than he anticipated, but my labs are consistently dropping, which is also normal. But he's a bit concerned with my red counts and especially my platelets, I'm officially anemic and a bleeder now. It's temporary, but with surgery looming in front of me, he wants me to get my counts back into the normal range. So, instead of doing six infusions before the surgery, he is now letting me take a bit of a break to recover. I go in for another lab and a PET scan on August third, and if possible I'll also be able to have my esophagus scoped to see if the tumor is gone. If it is and everything looks good, I'll have my surgery shortly after. Then, another recovery period before I resume my last four chemo infusions. He also said that he had gotten information on immune therapy as an additional treatment for my type of cancer. He said the report indicates that immune therapy increases the rate of full recovery by another fifteen percent, so we will be added that after surgery as well. Yesterday's infusion went well, but it did take a hell of a toll on me. I swelled up, turned white, had very red eyes, and deep sunken and almost black sockets under them; I looked like a zombie! It would have been great if it was Halloween. By this morning my color is back, the swelling is down, my eyes are no longer red and sunken. I'm also feeling a lot better than yesterday. Except for being tired because of the lower red counts, I'm feeling pretty well today. Sunday my wife and I are going camping for our wedding anniversary, a tradition we started back in 2007. In order to be able to enjoy the trip, I know I need to get my blood counts back up and flush as much chemo drugs from my system as possible, so it's pushing high protein and high iron foods as well as making sure I drink at least 64 ounces of liquids (non alcoholic) a day. Luckily I like liver, oysters, two foods packed with protein and iron. I'm also eating quite a bit of spinach which is packed with iron. But, with my taste buds gone wacko, it wouldn't matter if I like them or not, nothing tastes like it should. In summary, I'm doing well, better than most. I'm maintaining my positive outlook and good mood (most of the time) and am hoping that I'll be up to spending a bit more time here up until the surgery. I'll keep you posted, and keep in mind, that if I'm not feeling the best I may not be around for a spell, but I'll be back sooner or later with more good vibes to share. Thank you for your comments, prayers, and well wishes. They really mean a lot to me and are as much a part of my healing and recovery as the drugs and treatments. |
#1093301
| My daughter started a Go-Fund-Me page to help us out during these trying times after she found out all our vehicles are in need of repair. Our car lost the alternator last weekend and is in the shop getting it replaced and getting the speed censor/auto brake censor repaired. It's a 2007 Chevy HHR and starting to show it's age, but it's been a good, reliable, and affordable car for us. We also have a 2012 Yukon we bought second hand to pull our camper when my old Dodge Ram pickup broke down. But, that needs a front wheel bearing replaced, estimated to cost about $700.00. I did have the old Dodge repaired but it isn't the best on mileage and there's a problem with the headlights (if they are on high-beam for very long, they shut down/overheat) so we can't drive it after dark. I'm not sure what that will cost. I was planning on trying to find and repair it myself, but now with the infusions, I'm not able to do much of that type of work. Also, the deductible costs are piling up, some of the medications, especially over the counter ones, are not covered at all, and now my wife has to go in for surgery on her hip and will be out of work for at least a month. It's a work related injury, so the surgery is covered and hopefully missed wages as well, but we all know that they never pay as much as what is earned. After our ten month long legal battle with the county and having to pay child support for our adopted daughter who decided to run away, we about cleaned out our savings and found ourselves slipping further into dept. Then the cancer diagnosis and all the costs we are piling up with that, three vehicles all needing repairs at the same time, and my wife needing surgery has left us about financially wiped out. I'm not much for social media, but I do have my Facebook account that I use to keep in touch with family. That's where she started the Go-Fund-Me account, and hopefully it generates a little extra money to help out. If anyone has any other ideas about making a little (or a lot) of money, I'd sure love to hear them. |
#1093299
| It's July twelfth for Pete's sake, enough of the fireworks. Some clown almost caught our Christmas decorations on fire last night! Okay, not really; no Christmas decorations up yet and I haven't heard any fireworks since the weekend. It's been relatively quiet, hot, and very humid but we got a break today with lower seventies. With the cooler weather, however, we get smoke from Canada. At least that's what "they" say. I don't think it is from Canada because it doesn't smell like maple. As for me and my current health situation, it's going well. I did get hit harder with the last infusion, I was very tired and had a difficult time getting my strength back. Part of the problem was the fact that hardly anything, solid or liquid, tasted right. In fact, most things tasted so bad I had to force myself to eat. I also had no appetite and a lot of digestive system pain, couple that with few things tasting good, I know I did not eat enough those first few days after the infusion when I need the iron and proteins the most to build my blood counts back up. I also have swelling in my knuckles which have turned kind of purple, so it looks like I've been fist-fighting. There are also some skin blemishes on my arms and I bleed very easily. I'll discuss all this with the oncologist on Monday when I go in for round four. Hopefully we can find some relief for these symptoms. If not, I suspect that this upcoming round and those to follow will continue to increase in discomfort and take longer and longer to recover from. But Monday I will be at the half-way point; four down and four to go. As to when I'll have break from the chemo to undergo the surgery, it's undetermined. The oncologist would like me to have six infusions, if possible. If not, then five would be in order, but if I'm getting too run down from the infusions, I can have the surgery after my next infusion. I'm sure we will know more on Monday. |
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About The Author
My writing doesn't follow any set genre, it's interdependent of my mood and all that's taking place in life. I'm still finding myself, what I write constitutes the markers along the path of that journey. With time, many things will manifest in my work and perhaps I will pursue one or two genres. For now, it's not, "What type of writing is my passion?"
"Writing is my passion."
