My wife got a call from my oncologist on Wednesday to let us know they weren't going to proceed with the third round of chemo even though my white blood cell count was back up. He told her that since the chemo and radiation are supposed to work in tandem and I've already stopped my radiation that the chemo was no longer necessary. I'm glad because I feel like I've been through enough and if it's going to be ineffectual then there's no point in putting me through additional suffering and risk for side effects. Actually, I'm ecstatic. So I'm done with treatment. Woohoo!!
Wednesday night my saliva seemed to return to normal. I seemed to be producing normal amounts and it wasn't as ropy. I was pretty excited. However, the following day, Thursday, my glands returned to overproducing the ropy, slimy substance although the volume did seem less. The green phlegm I was producing stopped in the afternoon, but I did have coughing fits from an irritation in the back of my throat. It would happen only every few hours and it goes away after about a half hour. I also did feel various "dry spots" in my mouth even though there was plenty of saliva throughout. I don't know if they're actually dry spots or just a dry sensation.
However I was plagued with night sweats again on Wednesday night. I had to change my t-shirt four times from having been soaked through. Trying to track down the cause of this it looks like it may be caused by the Fentanyl pain patches I've been using. The listed side effects I've experienced with these are sweating and uncontrolled muscle twitching. I initially thought the muscle twitching was me just dozing off, but as I paid more attention to them I noticed they were happening even when I wasn't sleepy. So yesterday I stopped using the pain patches and went back to Hydrocodone. The only side effects I experience from Hydrocodone is happiness, positivity and a sense of well being. Side effects I could live with long term.
Last night my saliva again returned to an almost normal state and I only had one, minor instance of night sweats. Much better nights sleep. I think I only woke up once to change my shirt and slept pretty heavy the rest of the time.
Today my saliva, although still somewhat ropy, is a lot more normal. I haven't experienced any dry spots really and haven't had to carry around a cup to spit out excess saliva in. I think some of the overproduction of saliva may also be caused by all the dairy I'm consuming. My formula is dairy based so six cans of that a day is a lot more than I'm used to.
I called the supplier this morning to see if they can switch me to a non-dairy formula. Apparently they have to contact my nutritionist, she has to discuss my symptoms with me, then she has to contact my primary care doctor who has to write a prescription, then my insurance has to approve it, then and only then can they switch my formula. Which all sounds really ridiculous since I have to pay for it out-of-pocket anyway.
So I had my wife pick up some non-dairy protein powder and some almond milk from the store. I'm going to supplement some of my formula with that to at least decrease the amount of dairy I'm consuming to see if that helps until I can get my non-dairy formula.
The pain in my mouth seems better today too. I ended taking a dose of Hydrocodone around 4:15 PM today after a coughing fit from an irritation in the back of my throat. Not sure if the Hydrocodone with help with that but I thought I'd give it a try.
Since the pain has decreased in my mouth I'm also trying to drink more orally. It doesn't hurt too bad it just doesn't taste very good.
It seems like my sense of smell has increased. I can really smell the clorine in tap water and when I went on a walk to day, the first in a while, the air smelt nasty. I don't know if it was from the hot asphalt or from automobile exhaust.
I'm also starting to talk again. I've only been talking for the last few weeks when I absolutely had to. Most of the time I would communicate with my family members through charades due to the pain. It's been kind of fun but also frustrating when I couldn't get my point across.
I've been also putting green juice, Emergen-C, and pomegranate juice down my tube. They had me stop taking anti-oxidants because they didn't want them interfering with the chemo, but now that I'm done with that I can start taking them again to rebuild my body.
Anyway, today was a pretty good day. I really feel like today I'm moving forward toward feeling good again. I just need to get my pain level to a point where I can eat again. Once I can eat again I can get the g-tube removed. Once that's removed I can start putting some weight back on.
Friday, February 24, 2017
Tuesday, February 21, 2017
Day 5 After Radiation
Yesterday night I woke up twice soaking wet from really bad night sweats. Then after my injection appointment I went home and took a nap and had really bad night sweats again. My wife called my oncologist's office and they suspect it may be due to the Leukine shots. They told me to wait and see how I did the following night. I did wake up once last night and was sweating slightly, but nowhere nearly as bad as the previous night. Today I felt pretty normal as far as the sweating goes, that is up until the evening. I felt a little nauseous and was sweating on and off. I also felt either hot or cold so I constantly had to adjust the clothing and blankets I was wearing to get comfortable, although my body temperature hovered around 98 degrees. I guess I'll see what tonight holds.
My mucus production was closer to normal last night and I actually got a pretty good nights sleep for once. I woke up and my mouth was a little on the dry side. For most of the day it's been a little better as of late. However in the evening I started feeling dry spots popping up in my mouth. It's really weird to have all this saliva in your mouth yet feel like there's islands of dryness. I also think I have a sinus infection since I'm coughing up green mucous occasionally. I've been on an antibiotic for about 5 days now but it doesn't seem to be helping with that. I'll have to bring it up with my oncologist again tomorrow.
My wife spoke with my oncologists office today asking them about my labs. They told her that my white blood cell count may still not be up by Thursday so they may have to delay my treatments again. I certainly hope not. I was told my chemo was supposed to take place in conjunction with my radiation. Now that I'm done with radiation is the chemo really going to be beneficial that far away from radiation? Again, another question for my oncologist.
Til tomorrow then.
My mucus production was closer to normal last night and I actually got a pretty good nights sleep for once. I woke up and my mouth was a little on the dry side. For most of the day it's been a little better as of late. However in the evening I started feeling dry spots popping up in my mouth. It's really weird to have all this saliva in your mouth yet feel like there's islands of dryness. I also think I have a sinus infection since I'm coughing up green mucous occasionally. I've been on an antibiotic for about 5 days now but it doesn't seem to be helping with that. I'll have to bring it up with my oncologist again tomorrow.
My wife spoke with my oncologists office today asking them about my labs. They told her that my white blood cell count may still not be up by Thursday so they may have to delay my treatments again. I certainly hope not. I was told my chemo was supposed to take place in conjunction with my radiation. Now that I'm done with radiation is the chemo really going to be beneficial that far away from radiation? Again, another question for my oncologist.
Til tomorrow then.
Saturday, February 18, 2017
February 12th - 18th Summary
Another hard week in the record books. I haven't written much because I've just been so fatigued with treatment and pain that I only have enough energy to go to my medical appointments, deal with the necessities and veg on the couch the rest of the day. I finally got myself together enough to get in front of a computer and do some writing.
So I finished up my radiation treatments last week on Thursday. I'm telling you the last few days were sheer hell. I've already written about the pain. The final week was by far the worst. Add to that the thick, ropy saliva that I could either try to swallow (pain) or spit out (pain). The least painful way to eliminate it is to just hold my mouth over a sink or cup and let it fall out because any strain of the muscles in my mouth would cause, you guessed it, pain. When the saliva got too think feeling like it was gumming up the inside of my mouth I would take some warm water and swish it around and then just let it fall out into the sink.
In addition to the saliva the mask the put me in for treatment seemed tighter and more constrictive making breathing and swallowing more difficult. So I would rinse out my mouth as mentioned above just before going into treatment this would help for a few minutes but the last few minutes I pretty much felt like I was drowning in my own saliva. It got so bad that the last day I was about ready to tap out, but I pulled it together and made it through. If I never see that mask again it will be too soon. If I had anymore treatments scheduled I probably wouldn't have gone.
I was also supposed to finish up my last chemo sessions on Thu. and Fri. but they delayed them a week because my white blood cell count was low. So they scheduled me for Leukine shots over the next five days to stimulate my bone marrow to produce more white blood cells. I'm kind of glad the chemo did get delayed because I was not in the state-of-mind to have to deal with that too.
My oncologist's nurse did get me a prescription for Fentanyl a pain relief patch that lasts 72 hours. That saves me the hassle of having to dole out Hydrocodone every six hours. It does a pretty good job of relieving general pain. If the pain ever does increase I can always take Hydrocodone to supplement because they're different types of pain killer.
My oncologist also gave me a prescription for an antibiotic since I was having a low grade fever. The fever has subsided now, so that's good. I'm not sure whether that was coming from an infection from my g-tube or my throat. Both have seemed suspect lately. I've been having occasional green mucus coming from my mouth which is especially hard to expel. It's taken me some practice to expel it with the least about of pain but I'm finally getting the hang of it.
I've also gone back to gravity bags for feedings because they allow the formula to enter the stomach at it's own pace instead of forcing it in with a syringe. Since I'm on medical leave and not doing much but sitting on my ass all day it's not that much of an issue. It's just a bit tedious.
My reasoning in going back to gravity bags is I have concerns about my g-tube again. There's some hardness under the skin, and a little redness and some slight discharge. I don't know if the discharge is puss or formula. There's also a slight crampy feeling the left side of my abdomen. I described and showed my oncologist today and he said it looked fine. If there is an infection going on there hopefully the antibiotic he prescribed me will take care of it.
So now I start my recovery from radiation, thank God!!! I can't wait for my mouth to start feeling better and begin eating normal again so I can get this cursed g-tube taken out.
So I finished up my radiation treatments last week on Thursday. I'm telling you the last few days were sheer hell. I've already written about the pain. The final week was by far the worst. Add to that the thick, ropy saliva that I could either try to swallow (pain) or spit out (pain). The least painful way to eliminate it is to just hold my mouth over a sink or cup and let it fall out because any strain of the muscles in my mouth would cause, you guessed it, pain. When the saliva got too think feeling like it was gumming up the inside of my mouth I would take some warm water and swish it around and then just let it fall out into the sink.
In addition to the saliva the mask the put me in for treatment seemed tighter and more constrictive making breathing and swallowing more difficult. So I would rinse out my mouth as mentioned above just before going into treatment this would help for a few minutes but the last few minutes I pretty much felt like I was drowning in my own saliva. It got so bad that the last day I was about ready to tap out, but I pulled it together and made it through. If I never see that mask again it will be too soon. If I had anymore treatments scheduled I probably wouldn't have gone.
I was also supposed to finish up my last chemo sessions on Thu. and Fri. but they delayed them a week because my white blood cell count was low. So they scheduled me for Leukine shots over the next five days to stimulate my bone marrow to produce more white blood cells. I'm kind of glad the chemo did get delayed because I was not in the state-of-mind to have to deal with that too.
My oncologist's nurse did get me a prescription for Fentanyl a pain relief patch that lasts 72 hours. That saves me the hassle of having to dole out Hydrocodone every six hours. It does a pretty good job of relieving general pain. If the pain ever does increase I can always take Hydrocodone to supplement because they're different types of pain killer.
My oncologist also gave me a prescription for an antibiotic since I was having a low grade fever. The fever has subsided now, so that's good. I'm not sure whether that was coming from an infection from my g-tube or my throat. Both have seemed suspect lately. I've been having occasional green mucus coming from my mouth which is especially hard to expel. It's taken me some practice to expel it with the least about of pain but I'm finally getting the hang of it.
I've also gone back to gravity bags for feedings because they allow the formula to enter the stomach at it's own pace instead of forcing it in with a syringe. Since I'm on medical leave and not doing much but sitting on my ass all day it's not that much of an issue. It's just a bit tedious.
My reasoning in going back to gravity bags is I have concerns about my g-tube again. There's some hardness under the skin, and a little redness and some slight discharge. I don't know if the discharge is puss or formula. There's also a slight crampy feeling the left side of my abdomen. I described and showed my oncologist today and he said it looked fine. If there is an infection going on there hopefully the antibiotic he prescribed me will take care of it.
So now I start my recovery from radiation, thank God!!! I can't wait for my mouth to start feeling better and begin eating normal again so I can get this cursed g-tube taken out.
Sunday, February 12, 2017
Final Stretch
I'm in the final stretch of treatment. This week I have four more radiation treatments ending on Thursday and my last two chemo treatments on Thursday and Friday. The pain in my mouth and throat really hit me hard last Thursday and Friday, yesterday and today it's even worse. I had to up my dosage of Hydrocodone to 20 ml which I'm taking three times a day. It's cutting the pain overall pretty good, but there's still spots in my mouth that hurt whenever I try to drink something.
The ringing in my ear from the Cisplatin seemed to be almost gone when I woke up his morning. Since then it's returned but it seems quieter. I shook some keys yesterday and they seemed to make a flat noise, different from how they usually sound. I'm not sure if that's from the Cisplatin or if they've always sounded like that. I which I would have gotten my ears checked before beginning treatment so I could establish a baseline for hearing loss.
My g-tube has been fine. I picked up the lotion my dermatologist prescribed for the rash and I've been applying it a couple times a day. It's helped with the itching and my skin has cleared up around it. My weight had dropped to 146 pounds but I'm back up to 150 now. I also ordered some dumbbells online to that I can start lifting some weights and get some muscle tone back. I'm excited to start lifting again.
So, I just need to keep my pain under control, make it through this week of treatments then start focusing on healing. Really excited about being done.
The ringing in my ear from the Cisplatin seemed to be almost gone when I woke up his morning. Since then it's returned but it seems quieter. I shook some keys yesterday and they seemed to make a flat noise, different from how they usually sound. I'm not sure if that's from the Cisplatin or if they've always sounded like that. I which I would have gotten my ears checked before beginning treatment so I could establish a baseline for hearing loss.
My g-tube has been fine. I picked up the lotion my dermatologist prescribed for the rash and I've been applying it a couple times a day. It's helped with the itching and my skin has cleared up around it. My weight had dropped to 146 pounds but I'm back up to 150 now. I also ordered some dumbbells online to that I can start lifting some weights and get some muscle tone back. I'm excited to start lifting again.
So, I just need to keep my pain under control, make it through this week of treatments then start focusing on healing. Really excited about being done.
Monday, February 6, 2017
Day 36, 25/33 days of Radiation
It's been over a week since my last update and it's been a pretty rough time at that. I'll try and recap what's happened to get caught up.
My primary care doctors office got the gravity feed bags approved without another office visit. I got delivery of the bags around Jan. 26th. I used them the day prior to my chemo and up through the following Monday but ran into some problems with them. I think I might have over filled my stomach from using them which caused some bloating feeling along with what felt like heartburn/acid reflux. This caused some incredible discomfort.
Actually I'm not sure if I did actually overfill my stomach or if my feeding tube got displaced or a combination thereof. This discomfort was so bad I went to the hospital for fear I had a blockage in my bowels somewhere. After about six hours there the X-ray's showed no blockage. What they found was my g-tube balloon had descended to my duodenum. Unfortunately they didn't have anyone qualified there to reposition it. They said I had to go to another hospital to have it repositioned. At that point I was pretty exhausted so I just decided to go home and wait to see what the next day would bring.
That night I thought about my situation. Several things changed which may have contributed to this happening. One, I switched to gravity bags. Two, I was trying to stay on top of my six cans of formula and 64-96 ounces of water per day per my chemo instructions. Three, I lost one of the three buttons securing my stomach to my abdomen. In anticipation of the other ones following suit I stopped securing the tube to my skin to allow it slack for when the other ones fell off. This may have been the cause of the balloon slipping into my duodenum. Taking these things into consideration I decided to go back to the way I was doing things since that was working for me up until this point.
So, I pulled the g-tube out from my stomach up to the markers on the tube indicating the distance to the balloon and resecured it to my skin as I had done up until things went wrong. The following day, Wednesday, I did a feeding in the morning using the syringes and felt fine. Then I went to my radiation appointment. On my way to my appointment I informed my wife about my plans to return to my routine that was working to see how I felt before making another trip to the hospital.
She wasn't pleased with this and wanted some insurance that my g-tube was in the correct position. To give her piece-of-mind I went to the hospital where I had it inserted so they could check it. They checked it and sure enough it was in the correct position and told us it was fine.
I went back to administering my formula via syringes since it's a lot faster. The bags, although easier and less messy, just take too long. A two can feeding with the gravity bags take about an hour and a half and the syringes only take a half hour. I do use the gravity bags for water since that will run through the bag a lot faster and due to the volume is more convenient.
That Monday, Jan. 30th, due to my extreme discomfort and exhaustion I started my medical leave from work. I was really hoping to work through but with all the complications, fatique and increased pain in my mouth it's getting harder to perform my normal job functions. My goal is to return to work Feb. 27th, but we'll see.
Oh, one final thing. I found out I only have 33 treatments instead of 35. So I'll be finished with my radiation treatments 4 days earlier. It doesn't seem like much but I'm happy to shave a few days off. I'm eager to start the healing process.
My primary care doctors office got the gravity feed bags approved without another office visit. I got delivery of the bags around Jan. 26th. I used them the day prior to my chemo and up through the following Monday but ran into some problems with them. I think I might have over filled my stomach from using them which caused some bloating feeling along with what felt like heartburn/acid reflux. This caused some incredible discomfort.
Actually I'm not sure if I did actually overfill my stomach or if my feeding tube got displaced or a combination thereof. This discomfort was so bad I went to the hospital for fear I had a blockage in my bowels somewhere. After about six hours there the X-ray's showed no blockage. What they found was my g-tube balloon had descended to my duodenum. Unfortunately they didn't have anyone qualified there to reposition it. They said I had to go to another hospital to have it repositioned. At that point I was pretty exhausted so I just decided to go home and wait to see what the next day would bring.
That night I thought about my situation. Several things changed which may have contributed to this happening. One, I switched to gravity bags. Two, I was trying to stay on top of my six cans of formula and 64-96 ounces of water per day per my chemo instructions. Three, I lost one of the three buttons securing my stomach to my abdomen. In anticipation of the other ones following suit I stopped securing the tube to my skin to allow it slack for when the other ones fell off. This may have been the cause of the balloon slipping into my duodenum. Taking these things into consideration I decided to go back to the way I was doing things since that was working for me up until this point.
So, I pulled the g-tube out from my stomach up to the markers on the tube indicating the distance to the balloon and resecured it to my skin as I had done up until things went wrong. The following day, Wednesday, I did a feeding in the morning using the syringes and felt fine. Then I went to my radiation appointment. On my way to my appointment I informed my wife about my plans to return to my routine that was working to see how I felt before making another trip to the hospital.
She wasn't pleased with this and wanted some insurance that my g-tube was in the correct position. To give her piece-of-mind I went to the hospital where I had it inserted so they could check it. They checked it and sure enough it was in the correct position and told us it was fine.
I went back to administering my formula via syringes since it's a lot faster. The bags, although easier and less messy, just take too long. A two can feeding with the gravity bags take about an hour and a half and the syringes only take a half hour. I do use the gravity bags for water since that will run through the bag a lot faster and due to the volume is more convenient.
That Monday, Jan. 30th, due to my extreme discomfort and exhaustion I started my medical leave from work. I was really hoping to work through but with all the complications, fatique and increased pain in my mouth it's getting harder to perform my normal job functions. My goal is to return to work Feb. 27th, but we'll see.
Oh, one final thing. I found out I only have 33 treatments instead of 35. So I'll be finished with my radiation treatments 4 days earlier. It doesn't seem like much but I'm happy to shave a few days off. I'm eager to start the healing process.
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