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My thoughts released; a mind set free |
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These pages contain my thoughts, from meandering ideas and persuasions to deep cerebrations and serious mentations. Why, for what purpose? To release my mind and set creativity free. Somewhere inside the constraints of my mind dwells a writer, a poet, an artist who paints with words. In here I release those constraints and set the artist free. Perhaps, lost somewhere in the depths of thought, is a story or a poem, waiting to be written. |
| This 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. |
| 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. |
| 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. |
| 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. |
| 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. |
| Another day of high heat and humidity, we hit 99 this afternoon with a heat index of 106. But at least there was a nice breeze today, and earlier this afternoon, some clouds moved in. With them, severe thunderstorm warnings are issued as the cold, dry air moves in. I never minded the heat and had trouble understanding people who can't handle the heat, but now, with the chemo effects, I know very well what they suffer and they have my sympathy. At least for me, this will all change again after I finish treatment. But for now, it's miserable to deal with high heat and humidity, especially since I cannot handle anything cold, either. I have to wear gloves to take anything out of the fridge! Hopefully, within another day or two, the cold sensitivity will pass. This round has me with no appetite, but otherwise doing well. I'm still tired (anemic) but not as bad as yesterday. I've been making myself eat foods that will boost my blood counts, like my homemade soup. It's handy to just heat up, and it's one of the few things I've eaten lately that tastes appealing. But, even though my appetite is nilch and few things taste good, I've managed to maintain my weight and keep my labs within normal parameters. |
| It was, and still is, hot and humid today. It seems like the first few days after my infusions, I have a tough time handling the heat. With the increase in my dosage, it's lasting a bit longer this time, but I suspected as much. The increase also knocked my blood counts lower, so it's taking longer to get them back up; this also causes fatigue. I napped some this afternoon and have been trying to keep my water intake up as well as eating. I did make up a big kettle of vegetable beef soup yesterday since that seems to be easy on my stomach, full of nutrients, and easy to eat throughout the day. I picked up some nice soup bones to cook down so it's kind of a bone/beef broth. |
| I did my third infusion on Monday, then left the cancer center around two in the afternoon with a portable pump that infuses the last dose over a twenty-four-hour period. Things went well at the hospital, even though they increased my dosage to the full 100%. The worst part is the portable pump I have to carry around. The increased dosage did have all the pesky side effects starting sooner, my cold sensitivity seems a bit worse, and of course, I'm feeling more fatigued. But that's only because it wipes out the white and red blood cells, as well as lowers platelets. In all, however, I'm feeling pretty good, and with an iron and protein-rich diet, I'll have my blood counts up in a few days. In two weeks and I have my fourth infusion and meet with my oncologist to see if I'm able to do two more before my surgery. My labs are good, all my counts are within normal range. The P.A. was impressed with how well I'm doing, the dietitian asked what types of foods I'm eating that are keeping my labs up so well, and both were impressed with my positive mood and lightheartedness. All in all, I think the oncologist will let me take the six infusions before I do surgery. I'm all for it. It's a little rough the first week; Wednesday is just a rest day, Thursday I'm doing a little more but still tire easily. By the weekend, I'm feeling pretty good and able to do quite a bit without tiring, and in the second week, I feel much like I did before any of this even started. But with each infusion, the effects last a bit longer and are a bit worse. So my thinking is, if I can push through six sessions before my surgery, I'll only have to have two more after I heal up. And, after a nice six-week break from chemo, two infusions will be a walk in the park. By November/December, I'll be ringing that bell! |
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I'm sure there are times you must struggle with it. Wishing you the very, very best, TJ. My thoughts and prayers are with you!
