Well, my three month follow-ups are here which will be with my ENT, oncologist and radiation oncologist. Today I had my appointment with my ENT but I have to preface this with what happened the middle of last month.
When I had my appointment with my ENT back in March he gave me an order for a CT scan with and without contrast. Well last month I called to schedule the appointment and the imaging department ran it by insurance. Insurance denied it because it was with and without contrast and they would only approve one. So the radiation department called me and told me it was denied and to speak with my oncologist to see if he could get it approved.
So I did just that. However my oncologist called me back and gave me some news that really surprised me. He told me that he doesn't recommend follow-up scans for me. He told me that they can generate false positives which cause unnecessary biopsies and surgeries pursuing something that's not there and can actually do more harm than good. He said he basically relies on physical exams to check on recurrence. All this time I was under the impression that periodic scans were the norm.
I passed this information onto the radiology department and, long story short, my radiation oncologist submitted the order just with contrast and got it approved. So this last Tuesday I went in and had my CT scan done.
Today I was eager to discuss this scan/no scan business with my ENT as well as my general progress. I got there and he immediately scoped my mouth and throat. He mentioned he could still see some sores on the right side of my mouth that haven't healed yet. Down in my throat he saw what looked like a fungal infection going on.
After scoping me he gave me the news that the radiologist found a 17 mm mass in the images. My ENT said he doesn't think it's anything to worry about. The radiologist only looks at the images and doesn't see the patient. He said it's probably either the fungal infection or scarring.
I told him about what my oncologist said about not doing scans. My ENT thought that was strange and said that it's usually the oncologists that are ordering scans and the ENTs that are relying on physical exams because they have the tools to look inside the mouth, nose and throat and oncologists don't. He posed the question, "Then how are they supposed to know if a cancer returns or spreads?" I said that was a good question.
After a moments though he said that maybe because my cancer was caught at such an early stage, T1N1, that maybe my oncologist thought that I wasn't a high risk for recurrence. Could be. That's a question I'll have to ask when I see him next week.
My ENT said that now that we have this CT scan as a baseline he'll do another physical exam in a couple months and then decide if we need to do another CT or other modality scan a month after that. Then we'll be able to compare what they saw in this scan to see if that mass has grown or stayed the same and that will tell us if it's something to be concerned about.
He prescribed lozenges for the fungal infection and I scheduled my appointment for two months out.
Discussing this with my wife while leaving the office she reminded me that this may be exactly why my oncologist recommended against doing any scans; false positives. Makes sense. I sure feel like I'm putting a whole lot of trust in my doctors and for a person with trust issues, that's saying a lot.
I'm not too worried about this right now. Another thing to consider is that I had my other tumors for more than 5 months and they were less than a centimeter. Now, I just went through all this radiation and chemo and 3 months later something that wasn't there is now showing as 1.7 centimeters big. Pretty unlikely that a cancerous tumor just showed up out of nowhere after radiation and is that big. Make more sense that it's a fungal infection or scar tissue.
I have appointments with two of my other doctors next week so I'll see what they have to say. Just trying to stay positive and focus on being healthy.
Friday, June 2, 2017
Friday, May 12, 2017
First Dental Appointment
I had my first dental appointment since I ended my treatment. I was nervous all this time that my gums and teeth were shot from all the radiation and not brushing. I wasn't able to brush for a period of time due the pain and to the fact that it was hard for me to open my mouth enough to brush my teeth thoroughly.
Well, it went really well. My gums look good, stressed, but still in good shape. I also only have one small cavity starting up but they're going to have me use a prescription fluoride toothpaste on for the time being and check in on it the next checkup.
Oh ya, she did also see small fractures, especially on my crown's and molars, where I was grinding/clenching from the pain. She said the teeth are still hard so that's good, but we'll just need to keep an eye on them over time.
In the meantime they want me to get a medical release from my oncologist to determine if there are any restrictions on the work they can perform especially the amount of x-rays they can take.
Apart from that it was an ordinary visit with a typical cleaning, etc. Went really well and I'm pleasantly surprised my teeth and gums are in good shape.
Well, it went really well. My gums look good, stressed, but still in good shape. I also only have one small cavity starting up but they're going to have me use a prescription fluoride toothpaste on for the time being and check in on it the next checkup.
Oh ya, she did also see small fractures, especially on my crown's and molars, where I was grinding/clenching from the pain. She said the teeth are still hard so that's good, but we'll just need to keep an eye on them over time.
In the meantime they want me to get a medical release from my oncologist to determine if there are any restrictions on the work they can perform especially the amount of x-rays they can take.
Apart from that it was an ordinary visit with a typical cleaning, etc. Went really well and I'm pleasantly surprised my teeth and gums are in good shape.
Saturday, March 18, 2017
Taste Coming Back
I think it was about a week ago I was in the shower and I took in a mouthful of water to rinse my mouth out with. I had been doing this when the thick ropy saliva started because flushing my mouth out with warm water was one of the few things that felt good. Well this time the water actually tasted refreshing like water should, not metallic like it had tasted when I started radiation. This was a very pleasant surprise. Since then I had been taking sips of cold water throughout the day to freshen and sooth my mouth even though it would occasionally cause pain.
I've also been concerned about my teeth not having really used them in almost two months. I figured if I could find some not so spicy gum to chew that would keep them as well as my chewing function in good working order. So last night after work I went to the store and picked up some fruity gum with Xylitol as a sweetener. I read that gum with Xylitol is good for people with dry mouth because they're more susceptible to tooth decay and well, gum with sugar promotes tooth decay.
So I got this gum and really didn't expect much as far as flavor but was willing to sacrifice that for the previously mentioned reasons. To my surprise I could taste what seemed like the full, sweet flavor. It was painful at first as the full flavor of the gum came in contact with the inside of my raw mouth but after a few minutes that wore off and I could enjoy chewing. This gave me hope that my taste buds were returning sooner that expected. Was I excited.
The next day I tried another piece and I had been thinking about how I could temper the initial painfulness of a fresh stick of gum. I thought maybe I could soak it in water or even have my wife chew it for me to wear out some of the flavor. No, that's too disgusting even for someone an pragmatic as me. Then I wondered if I sipped ice cold water during the first few minutes if that would help. So I tried it and sure enough it did. I know it's small but being able to chew gum make me feel like I'm a little closer to normalcy.
In the afternoon my younger son made himself some frozen taquitos for lunch. Now, I've been smelling savory, cooked food and have wanted to try some for weeks now, but the rough texture that that kind of food typically has has been keeping me at bay. However, the flavor of the gum and the prospect of being able to taste savory food again gave me the courage to have a little taste. I didn't dare sample the crunchy tortilla, but a little bit of the meat might be OK. So I got a little pinch of the meat filling and cautiously placed it in my mouth. Wow! It was amazing! It tasted better than I remember it. Savory deliciousness with a little bit of spice. Of course it burned like hell, not from the heat but because of the condition of my mouth. Oh! But it was soooo worth it and to taste real food again was wonderful!!!
I am so excited to have my taste return to me this soon. I was worried that it would take months, now I am filled with a renewed vigor and joy with the idea that I may soon be able to not only eat again but enjoy food again. This right before my upcoming birthday. I could ask for a better birthday present. As a matter of fact, that's all I wanted for my birthday this year was to be able to taste food again.
Now all I have to do is heal my mouth and get past this pain, then I can start eating all the wonderful things I've been missing and work on getting back all the weight I lost. Speaking of healing, I've been examining the inside of my mouth this week fairly often and I've seen the sores, especially the one on the right side of my tongue, getting noticeably smaller. So there IS progress. I feel like I'm almost there. If I could get there by next weekend, my birthday weekend, that would be the best gift ever.
I've also been concerned about my teeth not having really used them in almost two months. I figured if I could find some not so spicy gum to chew that would keep them as well as my chewing function in good working order. So last night after work I went to the store and picked up some fruity gum with Xylitol as a sweetener. I read that gum with Xylitol is good for people with dry mouth because they're more susceptible to tooth decay and well, gum with sugar promotes tooth decay.
So I got this gum and really didn't expect much as far as flavor but was willing to sacrifice that for the previously mentioned reasons. To my surprise I could taste what seemed like the full, sweet flavor. It was painful at first as the full flavor of the gum came in contact with the inside of my raw mouth but after a few minutes that wore off and I could enjoy chewing. This gave me hope that my taste buds were returning sooner that expected. Was I excited.
The next day I tried another piece and I had been thinking about how I could temper the initial painfulness of a fresh stick of gum. I thought maybe I could soak it in water or even have my wife chew it for me to wear out some of the flavor. No, that's too disgusting even for someone an pragmatic as me. Then I wondered if I sipped ice cold water during the first few minutes if that would help. So I tried it and sure enough it did. I know it's small but being able to chew gum make me feel like I'm a little closer to normalcy.
In the afternoon my younger son made himself some frozen taquitos for lunch. Now, I've been smelling savory, cooked food and have wanted to try some for weeks now, but the rough texture that that kind of food typically has has been keeping me at bay. However, the flavor of the gum and the prospect of being able to taste savory food again gave me the courage to have a little taste. I didn't dare sample the crunchy tortilla, but a little bit of the meat might be OK. So I got a little pinch of the meat filling and cautiously placed it in my mouth. Wow! It was amazing! It tasted better than I remember it. Savory deliciousness with a little bit of spice. Of course it burned like hell, not from the heat but because of the condition of my mouth. Oh! But it was soooo worth it and to taste real food again was wonderful!!!
I am so excited to have my taste return to me this soon. I was worried that it would take months, now I am filled with a renewed vigor and joy with the idea that I may soon be able to not only eat again but enjoy food again. This right before my upcoming birthday. I could ask for a better birthday present. As a matter of fact, that's all I wanted for my birthday this year was to be able to taste food again.
Now all I have to do is heal my mouth and get past this pain, then I can start eating all the wonderful things I've been missing and work on getting back all the weight I lost. Speaking of healing, I've been examining the inside of my mouth this week fairly often and I've seen the sores, especially the one on the right side of my tongue, getting noticeably smaller. So there IS progress. I feel like I'm almost there. If I could get there by next weekend, my birthday weekend, that would be the best gift ever.
Friday, March 17, 2017
One Month After Radiation
Well it's been just over a month since my last radiation treatment and it's been slow going. I was expecting to heal as fast as my tonsillectomy's but I should have figured it would take longer since the radiation penetrated deeper into my skin. Anyway here's a report of where I'm at.
My saliva stopped overproducing and being ropy around March 1st, about 2 weeks after my last treatment. It's been fairly normal except for some dry spots in my mouth. So I've been using mouth moistening products to try to prevent this dryness. It's weird since when I experience this "dryness" it feels like I have saliva in my mouth, I just feel these "dry" spots like I drank a really dry glass of wine. So my mouth is dry but not dry. Maybe it's a Tao thing.
The sores in my mouth have been slow going. I still have blisters on my gums though they have diminished. I took some pictures of the inside of my mouth this week so I can document the progress of it's healing. I didn't take any earlier pictures because I couldn't open my mouth enough to get a good shot of the back of my mouth. Anyway, I noticed it kind of looks like the surface of Jupiter.
So, I imagine it pretty obvious, but I still have pain in my mouth. It comes and goes depending on how much I talk and stress it. I was off Hydrocodone for a while but that was when I wasn't talking. After starting work again, on March 6th, I started taking it again. As a result I had to start taking it again all day until I realized my pain level is tied to how much I talk so I've been trying to talk less and as a result I have to take less pain medicine. Usually only in the evening after a long day of speaking on the phone providing I.T. support. It is what it is.
It's good to be back to work though. My energy level is about 90% but I just need to pace myself so that I don't slip backwards and slow my healing or get sick. My son has been sick all week but so far it looks like I dodged that bullet. With work, commuting, healing, bills and all the other worries I have on my plate I'm really surprised I didn't catch is fever too. Very thankful for that.
I've pretty much gotten used to my g-tube and it hasn't given my any problems for a while now. I was hoping I'd be off it by now, but whatever. I'm drinking water and aloe water throughout the day orally. It hurts like a level 7-8 every third sip but I'm trying to keep my mouth moist and keep hydrated. I tried eating cucumbers last night only after 1 or 2 it burned the inside of my mouth and it felt like a small chunk got stuck in a pocket between my cheek and gums. It's difficult to move my tongue around with the pain and all so eating, aside from the pain, is awkward as well. This is really disappointing because my birthday is coming up this week and I was really hoping to feast on it. Doesn't look like that's going to happen, but I remain hopeful.
It's been a month so I imagine my mouth should start healing faster. I have a follow-up appointment with my Radiation Oncologist on Monday so maybe I'll have more information as to what I can expect as far as healing after that. I really want to be done with this, but I'll get there, it's just taking a little time.
My saliva stopped overproducing and being ropy around March 1st, about 2 weeks after my last treatment. It's been fairly normal except for some dry spots in my mouth. So I've been using mouth moistening products to try to prevent this dryness. It's weird since when I experience this "dryness" it feels like I have saliva in my mouth, I just feel these "dry" spots like I drank a really dry glass of wine. So my mouth is dry but not dry. Maybe it's a Tao thing.
The sores in my mouth have been slow going. I still have blisters on my gums though they have diminished. I took some pictures of the inside of my mouth this week so I can document the progress of it's healing. I didn't take any earlier pictures because I couldn't open my mouth enough to get a good shot of the back of my mouth. Anyway, I noticed it kind of looks like the surface of Jupiter.
So, I imagine it pretty obvious, but I still have pain in my mouth. It comes and goes depending on how much I talk and stress it. I was off Hydrocodone for a while but that was when I wasn't talking. After starting work again, on March 6th, I started taking it again. As a result I had to start taking it again all day until I realized my pain level is tied to how much I talk so I've been trying to talk less and as a result I have to take less pain medicine. Usually only in the evening after a long day of speaking on the phone providing I.T. support. It is what it is.
It's good to be back to work though. My energy level is about 90% but I just need to pace myself so that I don't slip backwards and slow my healing or get sick. My son has been sick all week but so far it looks like I dodged that bullet. With work, commuting, healing, bills and all the other worries I have on my plate I'm really surprised I didn't catch is fever too. Very thankful for that.
I've pretty much gotten used to my g-tube and it hasn't given my any problems for a while now. I was hoping I'd be off it by now, but whatever. I'm drinking water and aloe water throughout the day orally. It hurts like a level 7-8 every third sip but I'm trying to keep my mouth moist and keep hydrated. I tried eating cucumbers last night only after 1 or 2 it burned the inside of my mouth and it felt like a small chunk got stuck in a pocket between my cheek and gums. It's difficult to move my tongue around with the pain and all so eating, aside from the pain, is awkward as well. This is really disappointing because my birthday is coming up this week and I was really hoping to feast on it. Doesn't look like that's going to happen, but I remain hopeful.
It's been a month so I imagine my mouth should start healing faster. I have a follow-up appointment with my Radiation Oncologist on Monday so maybe I'll have more information as to what I can expect as far as healing after that. I really want to be done with this, but I'll get there, it's just taking a little time.
Friday, February 24, 2017
Day 8 After Radiation
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.
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.
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.
Tuesday, January 24, 2017
Day 22, 16/35 days of Radiation
The pain in my mouth has gotten significantly worse over the last few days. I've been taking the Oxycodone I was prescribed on and off since the weekend and that has been saving me. Without it my pain level is about a seven today, so I have a feeling I'm going to have to take it more regularly. The Oxy I have only lasts four hours but I found out there's an extended-release. So tomorrow at my weekly doctor check-up I'm going to discuss my pain and see if he can write me a prescription for that. I really don't want to be on this strong a pain medication for what will be around thirty days but I don't know how I'll be able to cope without it. Too bad they can't just put me in a coma until this is all over. I know that wouldn't be ideal for many reasons, it would just make this a whole lot easier to endure.
I've changed my feeding intervals from 6, 8 ounce feedings to 3, 16 ounce feedings. It's a lot more convenient and my stomach has been able to tolerate it fine. That makes my daily calorie intake over 2100 and as a result my weight has been holding steady just over 150. Also, the rash around my g-tube is clearing up and the discomfort of it has decreased which, of course, is good.
I'm also working out the kinks in my feeding routine. I've been trying to feed after I get ready for work. Yesterday that was somewhat disastrous because when I'm hungry my stomach pulls on my tube which causes stress on the hole in my abdomen which cause pain and discomfort. Add to that the tube cap kept popping open leaking stomach juice on my clothes and floor. Wonderful, isn't it. So today when I woke up I fed myself right away, then took a shower, then got dressed. That stopped the tube pulling first, allowed me to clean up and properly secure my tube and then get dressed without any leakage occurring. That worked out a lot better.
Lunch is no problem, I just need to do it around 1:00 PM to give me enough time to last me to dinner. I try to do dinner as late as possible, around 8:00 PM so that it lasts me most of the night so my little stomach demon (That's what I call the tube pulling, because it's like a little demon in my stomach yanking the tube.) doesn't wake me up at 4:00 AM. If all goes well I'll keep my little stomach demon happy and he'll leave me alone.
I'm still trying to get switched from bolus syringes to gravity bags but I've been getting stonewalled by my primary care doctor's office and the supplier. They're saying I need to come in for a visit. WTF for? I asked in not exactly those words. Because they need a paper trail, they said. Why didn't I need to come in for the syringes they ordered them a couple weeks ago. No answer. What are they going to do at the "office visit" that they can't do over the phone? Nothing. So they want me to come in just to tell them I want to be switched to bags because the syringes are a PITA and when I go back into chemo this week and they want me to drink 3 liters of water I'll have to refill my syringe 50 times to get there! Seriously!? Whatever. I scheduled an appointment for Feb. 7th. That was the earliest I could get in there. I also asked if she could just submit it to my insurance to see if they would approve it. She said she would. After I got off the phone with her I just found them online and ordered them myself. Hopefully I'll get them before the weekend. Tomorrow I'll just have to do my best to get all that water in me.
This Thursday is my half-way point. I'm so looking forward to this weekend because it's been my goal to keep working up to that point. If I can still work past that point that will be icing on the cake, but next week is going to be rough. The five days following chemo are the roughest, so we'll have to see how I do. After Monday I have 3 more weeks of radiation ending with 1 more treatment of chemo. Once I make it through all that then there will be a good couple weeks of initial recovery. So, hopefully around March 1st I'll start coming out of the woods. Breaking it down like this really helps me. Just need to make it to this weekend!
Wednesday, January 18, 2017
Day 16, 12/35 days of Radiation
Pain in my throat and mouth has been pretty high the last couple days. This morning I spoke with my doctor about this and he said it will probably be like this the duration of treatment and may even get worse. Right now I'm taking liquid Tylenol which is only taking the edge off. I'm only taking it a couple times a day to avoid the negative affects of taking pain medicine for an extended period. Likewise I want to hold off on taking something stronger as long as possible.
The pain really isn't too bad as long as I don't talk, cough, yawn, sneeze or try to open my mouth too much. It's very similar to how my throat felt after my surgeries, but this will be lasting 5+ weeks instead of the 2 weeks of recovery post op.
I've pretty much switched to using my g-tube for nutrition. Yesterday I was able to get 5 cans down it. The bolus syringe is really a PITA. I have to hold it the whole time and if I relax it will pop out of the tube making a mess. I'm also having to constantly refill it because it only holds 60 ml and a can of formula is about 240 ml. I have to apply a steady pressure so it goes in, but not too fast or else it might cause me to get sick. It'll be nice to switch to a gravity bag so I can just fill it once and let it drain. I'll have to follow-up with my primary doctor tomorrow to make sure the order went through. If not I'll just order some online and pay for them out-of-pocket.
I saw my dermatologist this morning about the contact dermatitis around my g-tube. He confirmed does look like classic contact dermatitis. He gave me a better ointment to put on it. It looks like it's healing so I'm not that worried about it anymore.
This is a new dermatologist that saw me out of the same office I usually go to. He was super nice and was very compassionate about what I'm going through. It's always nice to get a doctor that really seems interested in helping you.
Let's see, what else. Oh yes! The ringing in my ears has all but gone away. It's very faint now and I barely notice it anymore. That's a relief. That took almost two weeks to go away. Hopefully next time it won't last as long.
That's about it. I keep thinking about all the other people made it through this and it helps give me the confidence that I can make it too. My radiation nurse did tell me this morning that the treatment for throat cancer is one of the most difficult to endure. On the bright side it's highly curable. So, in the end, it should all be worth it.
Monday, January 16, 2017
Day 14, 10/35 days of Radiation
Friday I pretty much lost my sense of taste. Everything now tastes like cardboard which has killed my motivation to eat. Over the weekend I experimented a little bit trying to find things to eat that I could still in enjoy. So far the only things that don't taste disgusting are ice berg lettuce, cucumbers and vanilla ice cream. Being that they're already pretty plain I have no expectation of flavor so I enjoy them for their texture and coolness. Which is welcome due to the sores and rawness that I started feeling in my mouth as of Friday.
Speaking of which, the pain level in my mouth was about a 3-4 today but on the way home it increased to a 6-7. So after dinner I brought out the Magic Mouthwash from the fridge and tried it. Doesn't really seem to be cutting it.
I'm pretty much switched to a liquid diet now. I have a few protein/nutrition shakes I'm taking. I'm drinking Ensure Enlive and a couple different Orgain protein drinks. The Enlive "tastes" or should I say smells the best. The Orgain which is usually pretty good has been reduced to tasting like liquid chalk, but being that it's liquid I can just down it. Far worst is the formula that I received as supplemental nutrition. That I'm going to have to put down my g-tube to tolerate. I basically have to take down six of these a day to get my full amount of daily calories.
Not being able to eat really sucks! I'm bombarded with food commercials, restaurant smells and general delicious food sights and smells everywhere. This really is Hell. Now I'm REALLY counting down the days!
Let's see, what else. Still have a rash (contact dermatitis) around my g-tube. I've been putting hydrocortizone creme on it and it hasn't spread and looks like it's getting better. I have an appointment on Friday with my dermatologist so we'll see if they have anything better to offer.
The ringing in my ears is still there, but seems like it's getting incrementally quieter each day.
I did do another g-tube feeding last night and it went in pretty good. Holding, refilling and repeating the process until completion with a 60 ml bolus syringe is a pain in the ass. So I requested I be switched to gravity bags from my primary care doctor today. I could buy them online, but why pay for them if I can get my insurance to pay for them? If they don't switch me I will end up buying them myself. It'll save me countless hassle.
My weight is holding at 149.4 for the past few days, which is good since I know I haven't been getting the calories I should. I really need to make more of an effort to get the calories I need. I've had to make a lot of adjustments in the past few weeks so I'm not getting worked up over this. I just need to make that one of my goals.
February 20th cannot come fast enough. Until then I just need to distract myself with work and other things so I'm trying to keep my schedule busy. The less I think about it, the better. Then hopefully, before I know it, the 20th will be here and I'll be done.
Thursday, January 12, 2017
Day 10, 8/35 days of Radiation
Starting to feel more like normal today. I felt less nauseous. Big plus! It was still there but I didn't need to take any medication and I was able to eat pretty well, though nowhere near normal. Certain things still made me feel like I wanted to hurl though.
Speaking of medication, I happen to read the script info on the Ativan that I was prescribed yesterday for nausea and the first line reads, "Taking [Ativan] with opioid medications such as codine or hydrocodone (which I also have) may increase your risk of very serious side effects, including death." Wow! Glad I read that! That's one of the reasons I don't like taking prescription medications; the side effects are often more profound than the benefits especially when used with other medications. Lesson learned to read the prescription info on everything. So, I'll probably be staying away from that, especially when things get worse and I need to be on the pain meds.
My weight stayed the same over the last couple days. I'm now 149.2. Hopefully with the Cisplatin leaving my system and my nausea diminishing I'll be able to eat a lot more. I'm going to use the next couple weeks before my next chemo treatment to eat as much as possible to fortify myself for the next round. Problem is that food tastes very different now. Very bland for the most part, if they're not making me sick. The only thing still enjoyable is fruit. My wife bought some Kiwi's that are just saving me right now. They're so perfectly ripe and tasty. Strawberries are also incredibly good. I feel like I'm learning what foods I like and dislike all over again.
The dryness in my mouth hasn't really changed much. If anything it might have even gotten a little better. However the tightness around my scar seems more prominent. I think the metallic taste in my mouth is more pronounced as well.
My energy level today is feeling more back to normal. I feel more like my old self again. A lot more active and engaging. So it seems like there's a cycle where I'll feel like shit for the five days following chemo and on the sixth start feeling better. I'm glad I'm not going to feel like that the whole duration of treatment. At least I'm hopeful I won't.
The ringing in my ears seemed less bothersome today. I don't know if I just didn't notice it or if it actually decreased. Right now it seems rather loud, so I guess I'll wait and see what it's like tomorrow. I do want to mention that yesterday at work, when I was outside and cars would pass by I could hear their wheels make a noise I never really noticed before. Like I could hear the spokes cutting through the air. It was very odd, but that's the only thing I've noticed out of the ordinary with my hearing.
Last but definitely not least is sleep. I slept very well last night My god I needed that. It may be the reason today was so positive. So, without further ado, I'm off to bed looking forward to yet another good nights rest. Onward and upward!
Speaking of medication, I happen to read the script info on the Ativan that I was prescribed yesterday for nausea and the first line reads, "Taking [Ativan] with opioid medications such as codine or hydrocodone (which I also have) may increase your risk of very serious side effects, including death." Wow! Glad I read that! That's one of the reasons I don't like taking prescription medications; the side effects are often more profound than the benefits especially when used with other medications. Lesson learned to read the prescription info on everything. So, I'll probably be staying away from that, especially when things get worse and I need to be on the pain meds.
My weight stayed the same over the last couple days. I'm now 149.2. Hopefully with the Cisplatin leaving my system and my nausea diminishing I'll be able to eat a lot more. I'm going to use the next couple weeks before my next chemo treatment to eat as much as possible to fortify myself for the next round. Problem is that food tastes very different now. Very bland for the most part, if they're not making me sick. The only thing still enjoyable is fruit. My wife bought some Kiwi's that are just saving me right now. They're so perfectly ripe and tasty. Strawberries are also incredibly good. I feel like I'm learning what foods I like and dislike all over again.
The dryness in my mouth hasn't really changed much. If anything it might have even gotten a little better. However the tightness around my scar seems more prominent. I think the metallic taste in my mouth is more pronounced as well.
My energy level today is feeling more back to normal. I feel more like my old self again. A lot more active and engaging. So it seems like there's a cycle where I'll feel like shit for the five days following chemo and on the sixth start feeling better. I'm glad I'm not going to feel like that the whole duration of treatment. At least I'm hopeful I won't.
The ringing in my ears seemed less bothersome today. I don't know if I just didn't notice it or if it actually decreased. Right now it seems rather loud, so I guess I'll wait and see what it's like tomorrow. I do want to mention that yesterday at work, when I was outside and cars would pass by I could hear their wheels make a noise I never really noticed before. Like I could hear the spokes cutting through the air. It was very odd, but that's the only thing I've noticed out of the ordinary with my hearing.
Last but definitely not least is sleep. I slept very well last night My god I needed that. It may be the reason today was so positive. So, without further ado, I'm off to bed looking forward to yet another good nights rest. Onward and upward!
Wednesday, January 11, 2017
Day 9 (Since Beginning Treatment), 7/35 days of Radiation
Today was pretty good. After all...it's hump-daaaaaay!
G-tube is getting less of an annoyance allowing me to sleep pretty good last night. I did try to put a protein drink down it last night before bed since I was pretty nauseous yesterday and didn't get the calories I should have. My mistake was that I let the weirdness mess with my head and I started to feel feint so I had to stop before finishing it. I think I'm going to wait until the nutritionist/nurse comes out and gives me a proper demonstration so I can put my concerns behind me.
I've also developed a rash around it. I'll save you the photos. Suffice it to say it's not normal. I do have certain skin allergies, mostly to adhesive bandages and certain tapes. I had a reaction to the tape they used to secure the gauze to the site after surgery but it wasn't touching the area that is now broken out. I showed one of my nurses Monday and again today who in turn had my radiation oncologist take a look at it. The nurse also called the GI department that did the surgery and they, like my doctor, just suggested I put some antibiotic ointment on it. My doctor said to try that for the next couple days and show him again on Friday.
I also stopped by my oncologist's office today and spoke with a nurse there about my nausea and the ringing in my ears. She spoke with my oncologist and they prescribed me another anti-nausea medication, so I'll try that. I've got to get on top of this to prevent further weight loss. I know I'm below 150 now. My nurse noticed my weight loss today too and said, "No more." I told her about the nausea but she said I just had to suck it down. Thing is I'm afraid if I do that I'll throw it up and if that happens it will be either incredibly painful because of the g-tube or it will dislodge the g-tube and I'll have to go back and get it reinserted, or both. So hopefully the new anti-nausea medicine will work and I can start eating normal, or at least somewhat normal.
Actually, speaking of nausea, today has been pretty good for that too. I woke up hungry so decided to have a bowel of cereal with strawberries. I was able to finish the berries but not the cereal. Then after radiation I was pretty nauseous. I asked my radiation oncologist and radiation tech about nausea after radiation and they said radiation shouldn't cause nausea. So afterwards, on the way to work, I ate a handful of saltine crackers and drank water and felt pretty good. For lunch I had some curry chicken and rice and a bunch of fruit (strawberries, kiwi, raspberries) I packed for lunch. All of which I had little to no problem eating. I did try to add some carrots to the mix for lunch, but that was too much so I had to stop.
On the way home I was listening to the Star Wars Force Awakens audio book. I got to the place where Rey and Finn meet Han Solo for the first time. That got me thinking of Ham Salad from Space Balls which gave me cravings for macaroni salad. So on the way home I picked up some macaroni salad and chicken sausage. Unfortunately when I was able to finally enjoy it at home it wasn't as good as I imagined it being, but I was able to eat most of it which is a win.
As for the ringing in my ears it's been happening at various, annoying levels ever since my last chemo treatment. I mentioned it to my oncologist twice and then again today to the nurse. They both asked if I have experienced any other changes in hearing or pain which I haven't. So they just suggested I monitor it and let them know if it gets worse. However, the nurse said it could last a week or so. If it's still happening by the time I get my next treatment they'll probably make an adjustment.
Those are the worst things I've experienced so far. Aside from that I'm starting to have some dryness in my mouth and I'm feeling some tightness on the right side of my neck. I'm not sure if that's from the radiation or the scar from my neck dissection.
I've just trying to stay focused on the end game today and distracting myself with work and making plans for the future. My older son just bought a motorcycle and I think of all the fun we'll have riding together after all this is over. Amazing how distractions can take your mind off the crap you're traveling through.
Tuesday, January 10, 2017
Having Cancer Is Like 'Lord of the Rings'
I was thinking of the "battle with cancer" metaphor and now that I'm actually experiencing the "battle" I'm realizing that metaphor doesn't really work with me. Sure I'm fighting cancer and it is a battle but in such a fight you would imagine your enemy to be more reactive, more of an active adversary counter-attacking as much as defending. But it's really not like that.
So I started to try to think of other metaphors that might relate better to what cancer patients go through so that non-cancer patients could understand what this cancer-thing is all about. After all, when I used to hear about people battling cancer I thought cancer was dealing all the heavy blows. Turns out cancer is not much more than an annoying intruder that just won't go away. Yes, it can eventually kill you but in the beginning it's just a bunch of cells replicating uncontrollably. Which is bad but doesn't necessarily cause a lot of symptoms.
The real battle is dealing with all the weapons that you use to try to get rid of this passive-aggressive intruder. Maybe a better metaphor is how Wil E. Coyote tries to get rid of the Road Runner by using all those over-top-weapons, only to be thwarted in the end. Obviously that analogy isn't suitable since we can't have the Road Runner winning every time.
Then I thought that there must be some others out there that someone else has come up with. Why re-invent the wheel? So I did a search and the first result talked about how some see cancer as a journey rather than a battle. While reading the article it dawned on me that trying to rid myself of cancer is much like Frodo's journey in 'Lord of the Rings'. It's an extremely long movie but I'll keep my comparison brief.
You start off with finding you have The Ring (cancer) and that it's incredibly powerful and destructive which, as a result, needs to be destroyed. You discover that it's not easily destroyed and the only means of doing so is that you, yourself must deliver it to Mount Doom (radiation/chemo) which itself is incredibly powerful and destructive and could kill you.
So you must take this journey of trials and tribulations (these can be anything from medical personnel to insurance, from side-effects to daily survival) to deliver The Ring to it's destruction. You start the journey with Hobbits (family) and other races from Middle Earth (friends). Along the way they lend you various levels of support and help you along your journey, but ultimately you must carry the burden, much of the time, alone.
You go though this journey never really knowing if you're on the right path or if you'll ever make it, but you have to keep going because the whole world (your world) depends on it. Through all this you learn who your true friends and family are and even more so who you are and what you're made of.
One thing that's always there with you, by your side, is Sam (hope). Hope of another day, of another month of another year. To spend on your family, with your friends, your lover. To see another sunrise or sunset and to live another day.
So you keep going, not sure what the next day will bring. Whether it be one step closer to the end or your end. Then, if you make it to the end, and (!!spoiler alert!!) complete your quest to Mount Doom and destroy The Ring, you'll have to escape it's aftermath.
Well, that pretty much sums it up for me in a nutshell. To there and back again.
--
‘It is not the strength of the body, but the strength of the spirit.’ – J.R.R. Tolkien
So I started to try to think of other metaphors that might relate better to what cancer patients go through so that non-cancer patients could understand what this cancer-thing is all about. After all, when I used to hear about people battling cancer I thought cancer was dealing all the heavy blows. Turns out cancer is not much more than an annoying intruder that just won't go away. Yes, it can eventually kill you but in the beginning it's just a bunch of cells replicating uncontrollably. Which is bad but doesn't necessarily cause a lot of symptoms.
The real battle is dealing with all the weapons that you use to try to get rid of this passive-aggressive intruder. Maybe a better metaphor is how Wil E. Coyote tries to get rid of the Road Runner by using all those over-top-weapons, only to be thwarted in the end. Obviously that analogy isn't suitable since we can't have the Road Runner winning every time.
Then I thought that there must be some others out there that someone else has come up with. Why re-invent the wheel? So I did a search and the first result talked about how some see cancer as a journey rather than a battle. While reading the article it dawned on me that trying to rid myself of cancer is much like Frodo's journey in 'Lord of the Rings'. It's an extremely long movie but I'll keep my comparison brief.
You start off with finding you have The Ring (cancer) and that it's incredibly powerful and destructive which, as a result, needs to be destroyed. You discover that it's not easily destroyed and the only means of doing so is that you, yourself must deliver it to Mount Doom (radiation/chemo) which itself is incredibly powerful and destructive and could kill you.
So you must take this journey of trials and tribulations (these can be anything from medical personnel to insurance, from side-effects to daily survival) to deliver The Ring to it's destruction. You start the journey with Hobbits (family) and other races from Middle Earth (friends). Along the way they lend you various levels of support and help you along your journey, but ultimately you must carry the burden, much of the time, alone.
You go though this journey never really knowing if you're on the right path or if you'll ever make it, but you have to keep going because the whole world (your world) depends on it. Through all this you learn who your true friends and family are and even more so who you are and what you're made of.
One thing that's always there with you, by your side, is Sam (hope). Hope of another day, of another month of another year. To spend on your family, with your friends, your lover. To see another sunrise or sunset and to live another day.
So you keep going, not sure what the next day will bring. Whether it be one step closer to the end or your end. Then, if you make it to the end, and (!!spoiler alert!!) complete your quest to Mount Doom and destroy The Ring, you'll have to escape it's aftermath.
Well, that pretty much sums it up for me in a nutshell. To there and back again.
--
‘It is not the strength of the body, but the strength of the spirit.’ – J.R.R. Tolkien
Sunday, January 8, 2017
Radiation/Chemo Week 1 Summary
Wow! I knew this week was going to be tough, but not this tough and not for the reasons I'd expected.
Radiation Treatment
I started radiation on Tuesday, Jan. 3 and completed four sessions this week. The first day I felt a burning sensation in my throat which they said I wasn't supposed to feel. It lasted a couple hours and went away. It didn't reoccur on the subsequent sessions. I spoke to my doctor about it at my Wed. appointment and he reaffirmed that I shouldn't have felt anything but didn't have an explanation.
PEG Tube Insertion
I got my PEG Tube ("g-tube") inserted on Wednesday. This has probably been one of the worst experiences of my entire life. I had my reservations and was apprehensive about having it done but I accepted it's necessity so I went in with an open mind.
I went right after my radiation appointment and got checked in. I was told by the scheduler that the procedure would only take about a half hour with an hour or so for observation to make sure everything was stabilized. This gave me the sense that this was going to be a simple, quick procedure. My appointment time was for 1:00 PM so I expected to be out of there by 3:00 PM at the latest.
They got me prepped and the surgeon came in around 1:30 PM. He spent about 30 minutes explaining the whole procedure which was very reassuring and gave me confidence in his abilities. However, during his walk-through he said the procedure would take about an hour and a half. I was taken a back at the discrepancy but whatever.
Then he asked the nurse when I was scheduled to begin the procedure. She said immediately, which was the right answer, but he kind of gave out a chuckle then said that the team that was supposed to assist with the surgery had just left. WTF!! I thought to myself. It was already 2:00 PM, an hour past my scheduled start time and the team assigned to me just decided to go AWOL! They talked about substitutions but thankfully one of the nurses was on top of this and got everyone rounded up and I was finally ready to go around 2:30 PM.
So the procedure began. Here's the basic rundown. They stick a long, thin tube down my nose into my stomach so they can inflate it. Wee! Sounds like fun, huh!? That in itself was uncomfortable, to say the least. Then they do a CT scan of my abdomen to see where my stomach is. After that they stick a long needle into my stomach through my abdomen and pull my stomach up against my abdomen. They then put three other needles around it to secure my stomach to my abdomen and remove the central needle, expand the hole and insert the tube into the center. The end result is what you see in the image to the right.
They gave me some gauze and flushing syringes so I can dress and flush it until a nurse/nutritionist can come out and get me setup on formula. I was kind of disappointed that the discharge nurse didn't actually walk me through caring for it in the hospital. She just walked me through it "in the air", but didn't actually doing it on me. She even said that if I wanted more information on caring for and maintaining it I could just "Youtube" it. Never thought I'd hear that coming from a nurse. I look up how to do things all the time on Youtube so I guess I just was accepting of this.
So around 5:00 PM I was discharged and went home. I had worked a bit in the morning from home and I was planning on finishing up the rest of my shift into the evening. But that wouldn't come to pass.
I sat back down at my desk and began to work but it wasn't long before I began to experience an intense, level 10, sharp pain piercing my stomach. It was like someone repeatedly stabbing me in my abdomen. It is by far the worst pain I've ever felt and was only getting worse. I knew I had to go back to the hospital.
My wife took me back to the hospital but the GI department had gone home for the day so she took me to the ER which was very busy. She had the wits about her to call my chemo doctor to see if he could get me in to see what was going on. I remember her telling pretty much everyone on the ER staff that I had just had my g-tube inserted there and I needed to be seen right away to find out if they didn't screw something up. Maybe not in those exact words but I'm sure she was kicking ass and doing everything to get me in there. Well it worked! Between her and my doctor I got in there really fast. My intense moaning/screaming, literally, every minute from the intense pain might have carried a little weight too.
So I'm now in my room in the ER and they brought around a portable X-ray machine and did another CT scan. They said the tube placement looked good. The doctor on staff came by and put me on pain killers, morphine I believe, but that didn't cut it. I was pretty sure it was being caused by spasms and suggested that possibility to him. He pretty much just wrote it off and said he was going to check me into the hospital.
Luckily his shift ended and he handed us off to another doctor. I brought up the spasms to him and he didn't seem convinced much either but when we asked if we could at least try a muscle relaxant he was open to the suggestion and ordered it. I then asked my wife what do people do for muscle spasms and she said "massage and heat". So I began massaging the area around my g-tube with my finger tips, just like a cat would, and to my relief the spasms stopped and the pain did as well.
We also got a heat pack from the nurse and applied it as well. They then came by with the muscle relaxant which I took and shortly thereafter the pain all but disappeared. That was about five hours of pure hell.
I continued with heat and massage on and off throughout the night. I think the muscle relaxants helped for awhile allowing me to stop massaging and get some sleep. It was hard to keep track of time because the clock was broken in my room.
It was stuck at 7:34 the whole night. I asked the staff repeatedly to fix it. All it needed was a AA battery but none of them bothered much with it. Yes, I could have used my phone but when you're dealing with something like this you don't want to have to continually check you phone for the time to see how fast or slow things are moving. Having it right in front of you makes it easy to keep track of. Besides, for the longest time, about 5 hours, I just thought it was actually 7:34. Having a clock that doesn't move is really disorienting.
Finally in the morning I saw a janitor and asked him if he could replace the battery or at least swap the whole clock out. He didn't have a battery so I told him to just switch it out with the one at the nurses station. Thankfully he did and I now had a working clock and a sense of what time it was. Now maybe that clock would get fixed if the nurses had to deal with it.
With the clock fixed I could easily keep track of time and I knew I wanted to stay on schedule for radiation and chemo that day. The doctors were still planning on admitting me to the hospital but the massage and heat were working so I just wanted to get out of there and get on with my day. I didn't want my radiation or chemo to get pushed back. I asked them if they would just write me a script for pain meds and muscle relaxants and discharge me. They checked with my chemo doctor and he said it was alright for me to go to chemo that day.
I was discharged around 9:30 AM on Thur, Jan. 5th and headed straight over to radiation. I did radiation, went home for a brief break then went and completed my 4 hours of chemo for the day. My boss allowed me to switch my telecommuting days so I worked from my chemo chair for the time I was there then afterwards went home and finished out the rest of my shift at home.
So far this g-tube has been the worst part of treatment so far. It's painful and uncomfortable. I did some reading on the Internet and found that this is pretty typical. The surgeon said it would take about 2 weeks to get fully set and stabilized. So I've been pretty much just dealing with it. I'll probably bring it up at my radiation appointment on Monday and see what they have to say.
Chemo Treatment
So far the chemo has been fine. I had some problems the first day with urinating. They give you over 2 liters of fluid during the treatment so you have to urinate a lot. At first I couldn't go. I had the urge but I just couldn't release. I let the staff know and the doctor said that it could be due to the morphine they gave me the night before. He said they would have to catheter me.
I remembered my last experience with a catheter and didn't want to do this again. I asked if I could try again and this time I was able to expel 700 ml. Wow! I remember during stay at the hospital for my neck and throat surgeries that they wanted to catheter me when the ultrasound showed 500 ml in my bladder. So, ya, I was beyond capacity. After that I didn't have any further problems. All the fluids they gave me probably flushed the morphine out of my system.
My next chemo treatment is 3 weeks out then I'll have another session 3 weeks from then. So 3 sessions, 2-days each, for a total of 6 treatments. I'll also be doing labs in between to make sure by blood count is good.
Side Effects
So far I haven't experienced many side effects, which is expected. Just last night I woke up twice with cramping in my hands. I also had a slight ringing in my ears which could be a side effect of the chemo drug, Cisplatin. I was more concerned about the cramping in my hands which I initially though was numbness and could be attributed to the Cisplatin as well. I called the hotline just after midnight that they have for patients to call 24/7 and to my surprise my chemo doctor picked up, obviously waking him from his sleep.
Wow! I didn't expect him to pick up. I was expecting a nurse or maybe a physicians assistant but not my doctor. I told him was I was experiencing and he didn't feel it was anything to be concerned about. Just some minor side effects. Of course I'll monitor it and if it gets worse I'll be sure to bring it to their attention.
So far I have been blown away my my new oncologist. He really has been there for me. First with the ER staff then last night on the phone. I'm really impressed with the care and attention they provide their patients. These people really do care which means the world to someone, especially when they're going through something like this.
I also began experiencing a little dryness in my mouth last night so I began using Biotene mouth wash. This is probably caused by the radiation. This morning I started having some distaste in my mouth as well, almost a metallic like sensation which can also be attributed to radiation.
So that's about where I'm at. Just trying to take it easy this weekend and get a lot of rest, nutrition and prep for the week to come. Shouldn't be as dramatic; hopefully not. All I have to do this week is radiation which amounts to a few minutes a day Monday through Friday. That and take care of my nutrition, monitor side effects, staying positive and praying.
Monday, January 2, 2017
Meeting With New Oncologist, Friday Dec. 30, 2016
I met with my new oncologist last Friday to go over treatment. I chose to change oncologists because this one was a lot closer to home, right next door to my radiation oncologist and has a working relationship with my other doctors.
After going through my history and a brief exam we discussed treatment. I told him I was already set to start radiation and just need to get my chemo plan so that they could be started in tandem. He recommended Cisplatin which would be administered via IV. I asked him about Erbitux being that was what my ENT recommended. He told me that he didn't feel there was enough evidence of it being as effective as Cisplatin. That was kind of a bummer to me because I was looking forward to a more mild form of chemotherapy with fewer side effects. However, I also want the most effective treatment available. I want this to be done and done for good. So I agreed to proceed with Cisplatin.
We went over the treatment and side effects and then I had another meeting with the nurse manager detailing those side effects. Nausea and vomiting, of course. Sensitivity to sun, loss of hair and appetite, diarrhea, constipation, neuropathy. They gave me guidelines on what to do depending on what I experience and at what point to call them.
I was also told this used to cause kidney damage, back in the 70's, until they discovered that that could be averted with substantial hydration. They're going to hydrate me during the treatments but prior to and after I have to drink 96 oz. of water a day. I'm not a big water drinker to begin with so that much water is going to be a challenge. I get to a certain point and I just start feeling water-logged. Anyway, it's got to be done. I certainly don't want kidney damage.
I'm going to be doing 3 sessions spaced 3 weeks apart. Each session is 2 days, 4 hours per day. I start this Thursday and Friday, Jan. 5th & 6th. I'm going to try and work from the chemo room otherwise I'd just be sitting around for 4 hours. I already checked and they have wifi and power and my boss OK'd it. So we'll see how it goes.
That meeting was pretty overwhelming. I was really hoping for the Erbitux, that and everything I have to do on top of the chemo as far as monitoring my bodily functions was a bit much. But right now I'm feeling optimistic.
I did a test run on whether I could drink that much water today and I succeeded. I just keep thinking about all the people who went through this and not only did it but are now cured. I keep focusing on positive thoughts. I just have to make it through this and I'll be cured. I can do this!
After going through my history and a brief exam we discussed treatment. I told him I was already set to start radiation and just need to get my chemo plan so that they could be started in tandem. He recommended Cisplatin which would be administered via IV. I asked him about Erbitux being that was what my ENT recommended. He told me that he didn't feel there was enough evidence of it being as effective as Cisplatin. That was kind of a bummer to me because I was looking forward to a more mild form of chemotherapy with fewer side effects. However, I also want the most effective treatment available. I want this to be done and done for good. So I agreed to proceed with Cisplatin.
We went over the treatment and side effects and then I had another meeting with the nurse manager detailing those side effects. Nausea and vomiting, of course. Sensitivity to sun, loss of hair and appetite, diarrhea, constipation, neuropathy. They gave me guidelines on what to do depending on what I experience and at what point to call them.
I was also told this used to cause kidney damage, back in the 70's, until they discovered that that could be averted with substantial hydration. They're going to hydrate me during the treatments but prior to and after I have to drink 96 oz. of water a day. I'm not a big water drinker to begin with so that much water is going to be a challenge. I get to a certain point and I just start feeling water-logged. Anyway, it's got to be done. I certainly don't want kidney damage.
I'm going to be doing 3 sessions spaced 3 weeks apart. Each session is 2 days, 4 hours per day. I start this Thursday and Friday, Jan. 5th & 6th. I'm going to try and work from the chemo room otherwise I'd just be sitting around for 4 hours. I already checked and they have wifi and power and my boss OK'd it. So we'll see how it goes.
That meeting was pretty overwhelming. I was really hoping for the Erbitux, that and everything I have to do on top of the chemo as far as monitoring my bodily functions was a bit much. But right now I'm feeling optimistic.
I did a test run on whether I could drink that much water today and I succeeded. I just keep thinking about all the people who went through this and not only did it but are now cured. I keep focusing on positive thoughts. I just have to make it through this and I'll be cured. I can do this!
Subscribe to:
Posts (Atom)
