Yesterday marked my 7 month of being cancer free. Wow! What a feeling. I'm really feeling good these days and feel 100% better than I did a month ago. Most of the symptoms I had been experiencing have diminished to the point of non existence. I still wake up and have to spit a few times to clear my throat, but after that I'm pretty much back to normal. Most of my taste buds are working now and most food tastes as it should. I started going back to the gym to try and build up my muscles and get back into shape. I really lost a lot of weight during the radiation and even more when Dr. Debo removed my right tonsil. I actually got down to 133 lbs...that's pretty significant when you consider that I weighed about 171 lbs before the cancer. I weighed myself at the gym this morning and I'm up to 144lbs. I kind of would like to stay in the 144-150 range if possible. We'll see what happens.
That's about it for now....have a job interview with USAA tomorrow afternoon. I hope I get this job as it seems like it will be a good one.
Monday, November 5, 2007
Tuesday, September 11, 2007
5 month update
Well, here it is the 11th of September and I'm now a 5 month cancer survivor. I got my left tonsil removed 4 weeks ago yesterday and unfortunately still experiencing pain in my throat. I was however, able to quit using the liquid codeine a few days ago, but had to take a dose this afternoon so I could eat dinner tonight.
Got the results back a week after the surgery and test results came back negative....NO cancer found!!!!!
I flew to Washington last week and spent a couple days Salmon fishing with JR and Jeff, then left for beautiful British Columbia to Lake HiHium to do some Kamloops Rainbow fly fishing. During my stay at the cabin I was able to eat most of the food that was cooked and fortunately did not have to rely on eating yogurt. I was actually thinking that when I got home after being gone for 10 days that I would gain some weight back.
Weighed 137 lbs when I got home and the next morning was back down to 133lbs.
All I can say now is that I'm trying to eat more and more each day and hopefully my throat will start feeling better soon.
Not too much else to report. I'm just so ready to start feeling better and being able to eat food without it hurting so bad.
One thing that has definitly happened is that I think my stomach has shrunk. When I am able to eat, I can no longer eat the quantity that I used to be able to eat.
We'll see what happens in the future.
Got the results back a week after the surgery and test results came back negative....NO cancer found!!!!!
I flew to Washington last week and spent a couple days Salmon fishing with JR and Jeff, then left for beautiful British Columbia to Lake HiHium to do some Kamloops Rainbow fly fishing. During my stay at the cabin I was able to eat most of the food that was cooked and fortunately did not have to rely on eating yogurt. I was actually thinking that when I got home after being gone for 10 days that I would gain some weight back.
Weighed 137 lbs when I got home and the next morning was back down to 133lbs.
All I can say now is that I'm trying to eat more and more each day and hopefully my throat will start feeling better soon.
Not too much else to report. I'm just so ready to start feeling better and being able to eat food without it hurting so bad.
One thing that has definitly happened is that I think my stomach has shrunk. When I am able to eat, I can no longer eat the quantity that I used to be able to eat.
We'll see what happens in the future.
Tuesday, August 14, 2007
Tonsil Biopsy
Went in yesterday afternoon for a Laryngoscopy so the doctor could perform a tonsil biopsy. He just wants to make sure we got all the cancer. The CT and PET scan I had done a month or so ago both showed clear, but this is just another precaution and some added insurance. Dr. Debo also said that if he saw anything weird about the tonsil like scar tissue or it was inflamed or anything that this would be the time to go ahead and remove the left tonsil.
We'll as it turned out he noticed a small scratch which could have been caused by the breathing tube they inserted down my throat, so he went ahead and preformed a tonsillectomy on the left tonsil.
About the only drawback in getting the tonsillectomy rather than the biopsy is that my throat is very sore and probably will be for a week or two. The good thing about getting the tonsil removed is that is definitely one place cancer will not be able to grow.
He prescribed some liquid codeine, some antibiotics (liquid) and some nausea medicine which seems to be working pretty good. Haven't had to take any of the nausea medicine yet which is good. Other than a sore throat I feel pretty good. Plan on taking it easy this week and recovering quick as I'm flying to Seattle in two weeks for our annual fly fishing trip to British Columbia with my buddies.
We'll as it turned out he noticed a small scratch which could have been caused by the breathing tube they inserted down my throat, so he went ahead and preformed a tonsillectomy on the left tonsil.
About the only drawback in getting the tonsillectomy rather than the biopsy is that my throat is very sore and probably will be for a week or two. The good thing about getting the tonsil removed is that is definitely one place cancer will not be able to grow.
He prescribed some liquid codeine, some antibiotics (liquid) and some nausea medicine which seems to be working pretty good. Haven't had to take any of the nausea medicine yet which is good. Other than a sore throat I feel pretty good. Plan on taking it easy this week and recovering quick as I'm flying to Seattle in two weeks for our annual fly fishing trip to British Columbia with my buddies.
Sunday, August 5, 2007
4 months surviving cancer
Yesterday was the 4 month mark. I guess I'm considered a cancer survivor now of 4 months...Wheew! It's been a long rough road, but each day or actually it seems better to measure it by the month now since things don't seem to changing on a daily basis anymore, things are getting better.
I'm still experiencing dry mouth and started taking the salagen tablets again to help stimulate my saliva glands. I always have a bottle of water handy and now make it a practice to get up in the morning, pack my small cooler with 6 bottles of water and fill the rest up with ice. I take the cooler with me wherever I go and always have cool water.
My neck will still not grow whiskers below the jawline and the back of my neck is still void of hair but at least nobody can tell by looking at me.
The left half of my neck where the surgery was done is still numb and doctors say it might always be that way. I can live with it!
I'm having minor surgery on the 13th so Dr. Debo can do a tonsil biopsy. One more way to prove the cancer is gone...CT ad PET scan showed clear, but he still wants to verify it this way. I'll report on that when I get the info.
Since I've been cancer free for 4 months, I celebrated yesterday by treating myself to an Offshore fishing trip onboard the "Lucky Dog".
I unfortunately did not catch a fish, but one of my buddies caught a nice 44lb Tuna and one of the other guys got a small Tilefish.
Fishing is fishing and just to be able to go is a plus. Going fishing, enjoying the day with friends and being on the water is what I love. Catching a fish is just a bonus.
Saturday, July 14, 2007
3 Month 10 Day Update
Wow! I can't believe it's been over three months since my last radiation treatment. I'm feeling pretty good these days and only dealing with a few side effects which are lingering on.
I wake up each morning with some thick spit in my mouth that I immediately have to spit up into the sink and then rinse my mouth out. I think this is caused by the dry mouth that I'm still experiencing. Seems like I have to carry around a bottle of water with me at all times and keep drinking small amounts of it.
The whiskers on my face have all grown back from my jawline up, but from the jawline down it's still as smooth as a baby's A**. The hair on the back of neck still hasn't grown back and is just as smooth, but at least most of the hair on my head has grown in just fine. It is considerable finer than it used to be, but I'm getting used to that.
As far as food goes, I can eat just about anything, but foods with a lot of breading, chips, crackers and that type of food don't get broken down very well inside my mouth due to the lack of saliva, so I tend to stay away from most foods like that.
My weight is still down about 20-25 pounds from where I used to be, but I feel good and am trying to gain it back but it just doesn't seem to want to come back. I started back at the gym so maybe I'll gain muscle back and not beer gut or fat.
Other than that I'm feeling pretty good. After talking to my Oncologist and ENT doctor, they both seem to share the same point of view in that those side effects, dry mouth and loss of hair on my neck, may never get back to the way they used to be and I might end of dealing with both of those for the rest of my life.
I'm scheduled for a Laryngoscopy on the 13th of August. Dr. Debo wants to do a biopsy of my tonsil just be sure that no cancer is present. I'm hoping this will be clear and if it is, I'll just start having CT scans every 6 months or so for the next five years with quarterly visits to the Oncologist and ENT doctor.
I've been doing a lot of fishing lately and have met some pretty cool people in the process that not only have boats that can get to where the fish are, but have the knowledge of fishing in this area and don't mind passing along there fishing tips.
I fished with a guy yesterday that is retired from the Navy and had tonsil cancer. He is a cancer survivor of two years. Boy oh boy did him and I have a lot to talk about. He's also still experiencing some of the side effects that I'm dealing with. Dry mouth is the major one and lack of taste in some foods. He unfortunately had to have all of his teeth removed prior to his radiation which seems to be common in a lot of people who have had to have radiation therapy in the neck region. Fortunately, I did not have to go through that. Anyway, it was really interesting talking to him yesterday about his experiences and how he's dealing with things today.
Here are a couple of pics from us fishing yesterday. We cruised 12.2 miles out to the Chesapeake light tower and got a total of 16 Spadefish. Myself and new friend Tommy caught about 8 on rod and reels and my friends Jamie (the cancer survivor) and John the Captain of the boat shot the rest with spear guns while snorkeling around the tower.
I wake up each morning with some thick spit in my mouth that I immediately have to spit up into the sink and then rinse my mouth out. I think this is caused by the dry mouth that I'm still experiencing. Seems like I have to carry around a bottle of water with me at all times and keep drinking small amounts of it.
The whiskers on my face have all grown back from my jawline up, but from the jawline down it's still as smooth as a baby's A**. The hair on the back of neck still hasn't grown back and is just as smooth, but at least most of the hair on my head has grown in just fine. It is considerable finer than it used to be, but I'm getting used to that.
As far as food goes, I can eat just about anything, but foods with a lot of breading, chips, crackers and that type of food don't get broken down very well inside my mouth due to the lack of saliva, so I tend to stay away from most foods like that.
My weight is still down about 20-25 pounds from where I used to be, but I feel good and am trying to gain it back but it just doesn't seem to want to come back. I started back at the gym so maybe I'll gain muscle back and not beer gut or fat.
Other than that I'm feeling pretty good. After talking to my Oncologist and ENT doctor, they both seem to share the same point of view in that those side effects, dry mouth and loss of hair on my neck, may never get back to the way they used to be and I might end of dealing with both of those for the rest of my life.
I'm scheduled for a Laryngoscopy on the 13th of August. Dr. Debo wants to do a biopsy of my tonsil just be sure that no cancer is present. I'm hoping this will be clear and if it is, I'll just start having CT scans every 6 months or so for the next five years with quarterly visits to the Oncologist and ENT doctor.
I've been doing a lot of fishing lately and have met some pretty cool people in the process that not only have boats that can get to where the fish are, but have the knowledge of fishing in this area and don't mind passing along there fishing tips.
I fished with a guy yesterday that is retired from the Navy and had tonsil cancer. He is a cancer survivor of two years. Boy oh boy did him and I have a lot to talk about. He's also still experiencing some of the side effects that I'm dealing with. Dry mouth is the major one and lack of taste in some foods. He unfortunately had to have all of his teeth removed prior to his radiation which seems to be common in a lot of people who have had to have radiation therapy in the neck region. Fortunately, I did not have to go through that. Anyway, it was really interesting talking to him yesterday about his experiences and how he's dealing with things today.
Here are a couple of pics from us fishing yesterday. We cruised 12.2 miles out to the Chesapeake light tower and got a total of 16 Spadefish. Myself and new friend Tommy caught about 8 on rod and reels and my friends Jamie (the cancer survivor) and John the Captain of the boat shot the rest with spear guns while snorkeling around the tower.
Thursday, June 21, 2007
Lots of Good News
Well, here it is June 21st - 2 1/2 months since Dave's last radiation treatment and he is improving each and every day - so much so, that he hasn't had the time to sit down and update this. He is actually out fishing right now...so here is what has been going on since June 5th.
Dave had a CT scan on the 4th and then the PET scan on the 6th. We saw Dr. Debo (ENT) on the 11th for the results - everything looks good - no hot spots (which means no detectable cancer cells) - which translates to me a great anniversary present (we celebrated our 19th anniversary - hard to believe we've been married that long). The next step for Dave is a follow-up appointment in July, and then Dr. Debo is going to do a tonsil biopsy in August - just to ensure that it is all gone. Dave's mouth is healing properly. The thrush is gone - daily consumption of yogurt helps to ensure that. Dave is still having some trouble with dry mouth, he constantly has to have water nearby - and I even stashed a couple of bottles in the car to make sure he is never without.
What Dave can eat is improving every day. This last weekend we were up in Williamsburg and Dave ate a Ham biscuit (just a biscuit with sliced ham - no mayo or anything), and got it down easily with water. Food is still tasting off, but he is trying more and more, starches are not completely out of the picture anymore.
Dave got his first haircut this past Monday - more and more of his hair and whisker are growing back. The two bald spots on the back of his head are finally growing out. He is to the point that he got a military hair cut and he is looking like he used to. His hair is still baby fine, and gray, but he is slowly looking like his old self again. The whiskers on his chin are growing back and the sides of his mustache as well - the center of his mustache is still weak, but it will come back eventually. He still does not have any whiskers on the lower part of his jaw and neck - easier to shave.
Dave just got back from fishing - a sure sign that he is feeling better - and I have to get down there to process the fish that he brought back...
So I didn't post this immediately - fish processing is done and here is a picture from his trip today.
Take care and thanks for all the support and prayers.
Dave had a CT scan on the 4th and then the PET scan on the 6th. We saw Dr. Debo (ENT) on the 11th for the results - everything looks good - no hot spots (which means no detectable cancer cells) - which translates to me a great anniversary present (we celebrated our 19th anniversary - hard to believe we've been married that long). The next step for Dave is a follow-up appointment in July, and then Dr. Debo is going to do a tonsil biopsy in August - just to ensure that it is all gone. Dave's mouth is healing properly. The thrush is gone - daily consumption of yogurt helps to ensure that. Dave is still having some trouble with dry mouth, he constantly has to have water nearby - and I even stashed a couple of bottles in the car to make sure he is never without.
What Dave can eat is improving every day. This last weekend we were up in Williamsburg and Dave ate a Ham biscuit (just a biscuit with sliced ham - no mayo or anything), and got it down easily with water. Food is still tasting off, but he is trying more and more, starches are not completely out of the picture anymore.
Dave got his first haircut this past Monday - more and more of his hair and whisker are growing back. The two bald spots on the back of his head are finally growing out. He is to the point that he got a military hair cut and he is looking like he used to. His hair is still baby fine, and gray, but he is slowly looking like his old self again. The whiskers on his chin are growing back and the sides of his mustache as well - the center of his mustache is still weak, but it will come back eventually. He still does not have any whiskers on the lower part of his jaw and neck - easier to shave.
Dave just got back from fishing - a sure sign that he is feeling better - and I have to get down there to process the fish that he brought back...
So I didn't post this immediately - fish processing is done and here is a picture from his trip today.
Take care and thanks for all the support and prayers.
Tuesday, June 5, 2007
2 Months Out
We'll today is the 5th of June and it's been 2 months since my last radiation treatment. Figured I ought to put how I'm feeling and coping with the situation.
Food still doesn't taste like it should. Breads, pasta, crackers, cookies etc...seem to just get all balled up in my mouth and definitely need water or milk to break them down to make them easier to swallow.
I've found that shrimp and crab taste good and both go down good. I've been eating eggs and cereal for breakfast. Eggs taste good, but the cereal starts tasting bad about half way thru. Fruits also go down pretty well.
My throat gets a little sore every once in a while, but nothing compared to how it felt a month or so ago. Pretty much, I can eat most food...it doesn't all taste like it should but I can at least eat.
My weight is still down (147-149lbs), and I think this is largely due to the fact that I'm just not eating a lot of food. I figure my stomach has probably shrunk a little and since food is not tasting so great, I don't eat much of it. Marjie is constantly on my case about eating and trying to fatten me up.
The thick saliva and mucus is almost gone. I wake up in the morning and have to yak out a few globs of spit, but at least I'm not having to carry around that spit cup.
I'm thinking my salivary glands are still not up to par as proven by food not tasting quite right, the fact that breads and pasta don't break down properly and the spit issue in the morning.
My beard is whacked. I have whiskers on the top half of my face but they stop about a half inch before my jaw bone so my neck is still totally smooth. About two weeks ago, the whiskers started re-growing on my chin.
I still have two bald spots on the back of my head adn Marjie said that she is starting to notice some new hair starting to sprout up on the right side.
The rest of my hair is growing ok but the hair is really fine. It reminds me of a baby bird like an ostrich. Hair color is gray!
I feel pretty good these days, but every once in a while my throat gets sorer than normal or my stomach hurts or something gets out of whack and I start worrying! Who knows!
Had my first CT scan done yesterday and have a PET scan scheduled for tomorrow. I'll call Dr. Debo this afternoon and schedule an appointment with him so we can review the results. He wants to perform a procedure where they put me under anaethesia and he goes in and does a biopsy of my tonsil. I guess it's just to be on the safe side. He says if there is any cancer at that point, he'll go ahead and remove the tonsil....
Just a 2 month update. More to follow.
Food still doesn't taste like it should. Breads, pasta, crackers, cookies etc...seem to just get all balled up in my mouth and definitely need water or milk to break them down to make them easier to swallow.
I've found that shrimp and crab taste good and both go down good. I've been eating eggs and cereal for breakfast. Eggs taste good, but the cereal starts tasting bad about half way thru. Fruits also go down pretty well.
My throat gets a little sore every once in a while, but nothing compared to how it felt a month or so ago. Pretty much, I can eat most food...it doesn't all taste like it should but I can at least eat.
My weight is still down (147-149lbs), and I think this is largely due to the fact that I'm just not eating a lot of food. I figure my stomach has probably shrunk a little and since food is not tasting so great, I don't eat much of it. Marjie is constantly on my case about eating and trying to fatten me up.
The thick saliva and mucus is almost gone. I wake up in the morning and have to yak out a few globs of spit, but at least I'm not having to carry around that spit cup.
I'm thinking my salivary glands are still not up to par as proven by food not tasting quite right, the fact that breads and pasta don't break down properly and the spit issue in the morning.
My beard is whacked. I have whiskers on the top half of my face but they stop about a half inch before my jaw bone so my neck is still totally smooth. About two weeks ago, the whiskers started re-growing on my chin.
I still have two bald spots on the back of my head adn Marjie said that she is starting to notice some new hair starting to sprout up on the right side.
The rest of my hair is growing ok but the hair is really fine. It reminds me of a baby bird like an ostrich. Hair color is gray!
I feel pretty good these days, but every once in a while my throat gets sorer than normal or my stomach hurts or something gets out of whack and I start worrying! Who knows!
Had my first CT scan done yesterday and have a PET scan scheduled for tomorrow. I'll call Dr. Debo this afternoon and schedule an appointment with him so we can review the results. He wants to perform a procedure where they put me under anaethesia and he goes in and does a biopsy of my tonsil. I guess it's just to be on the safe side. He says if there is any cancer at that point, he'll go ahead and remove the tonsil....
Just a 2 month update. More to follow.
Thursday, May 24, 2007
Good update - Thursday
Well, it's Thursday and since Dave has been too busy to update this, I guess I should let everyone know how he is doing.
We went and saw Dr. Debo on Monday - very good appointment, took forever, but we had a good discussion about what Dave had experienced over the previous week. He confirmed what we thought about the steroids and Dave's sense of taste. Essentially the Prednisone (steroid) drastically reduced the swelling in Dave's mouth, which made eating and tasting measurably better. And once Dave was off the Prednisone, the swelling resumed and thus brought back the thick spit, and messed up taste. It also changed the environment in Dave's mouth that allowed the bacteria in Dave's mouth to develop into a yeast infection (thrush), which accounted for the sore mouth, sore and coated tongue, and the white patches on the side of his mouth. We actually have the medication to clear it up at home, just needed Dr. Debo's confirmation on what was going on. So Dave is now on 5 Mycelex troches (lozenges) a day - and it has pretty much cleared up all the infection as I am typing this. Yeast infections have been pretty much a common side effect throughout the past few months of treatment. We have another appointment with Dr. Debo next Wednesday - to check on Dave's progress - to ensure the infection is gone, to see about the status of his ears, since we couldn't ascertain really any progress with his mouth in pain. The MRI did state that he had a mucous retention cyst in his left maxillary sinus, which could be causing pressure on his Eustachian tube, causing the hearing loss, but it is nothing to be worried about. It is a common occurrence, as the radiation has disrupted his lymphatic system in his neck, so his body has to develop other avenues or routes to get rid of or process the fluids. Other than that - Dave's MRI is normal - which is very good news.
So as Dave is sucking on his troche - we are continuing to find ways to keep Dave busy. We started tackling the interior painting with the stairwell and upstairs hallway. Tuesday we put on the first coat, yesterday Dave knocked out all the doors, and today we put on the second coat - tomorrow is all the white trim or we are going to take a break and head out on the water for some fishing or cruising the intercoastal. The weather has been beautiful over the past few days - 70-80's and tomorrow there should be no wind - perfect for the Chesapeake.
Well David just got home from school, and I have to finish removing the tape from the trim. Take care and it is so nice to have Dave back up - almost like his old self.
We went and saw Dr. Debo on Monday - very good appointment, took forever, but we had a good discussion about what Dave had experienced over the previous week. He confirmed what we thought about the steroids and Dave's sense of taste. Essentially the Prednisone (steroid) drastically reduced the swelling in Dave's mouth, which made eating and tasting measurably better. And once Dave was off the Prednisone, the swelling resumed and thus brought back the thick spit, and messed up taste. It also changed the environment in Dave's mouth that allowed the bacteria in Dave's mouth to develop into a yeast infection (thrush), which accounted for the sore mouth, sore and coated tongue, and the white patches on the side of his mouth. We actually have the medication to clear it up at home, just needed Dr. Debo's confirmation on what was going on. So Dave is now on 5 Mycelex troches (lozenges) a day - and it has pretty much cleared up all the infection as I am typing this. Yeast infections have been pretty much a common side effect throughout the past few months of treatment. We have another appointment with Dr. Debo next Wednesday - to check on Dave's progress - to ensure the infection is gone, to see about the status of his ears, since we couldn't ascertain really any progress with his mouth in pain. The MRI did state that he had a mucous retention cyst in his left maxillary sinus, which could be causing pressure on his Eustachian tube, causing the hearing loss, but it is nothing to be worried about. It is a common occurrence, as the radiation has disrupted his lymphatic system in his neck, so his body has to develop other avenues or routes to get rid of or process the fluids. Other than that - Dave's MRI is normal - which is very good news.
So as Dave is sucking on his troche - we are continuing to find ways to keep Dave busy. We started tackling the interior painting with the stairwell and upstairs hallway. Tuesday we put on the first coat, yesterday Dave knocked out all the doors, and today we put on the second coat - tomorrow is all the white trim or we are going to take a break and head out on the water for some fishing or cruising the intercoastal. The weather has been beautiful over the past few days - 70-80's and tomorrow there should be no wind - perfect for the Chesapeake.
Well David just got home from school, and I have to finish removing the tape from the trim. Take care and it is so nice to have Dave back up - almost like his old self.
Sunday, May 20, 2007
One step forward, two steps back
We'll here it us Sunday night the 20th of May and I'm feeling like I'm two steps backwards from where I was a week ago. Maybe it was too good to be true, but I was feeling on t0p of the world last weekend.....sore throat was gone, food was tasting good and everything going down the gullet and life was good. Now I'm sitting here with an extremely sore throat, sore tongue and on a scale of 1-10, feeling like a 3. I'm not sure what happened, but as of 3-4 days ago, my mouth and tongue starting getting sore again and the thick mucus came back.
What I'm really worried about at this point is the fact that I may have jumped the gun in getting the feeding tube removed. I'm having a hard time eating food again and now have resorted to only eating soft foods. If this gets too much worse and I get back to not being able to eat food, I'm gonna be sh+t out of luck, because there is no more feeing tube for me to nourish myself.
Marjie thinks I might have what they call "Thrush" which is the presence of creamy white, slightly raised lesions in your mouth – usually on your tongue or inner cheeks – but also sometimes on the roof of your mouth, gums, tonsils, or back of your throat.
A lot of patients who go through head and neck radiation get this. I was prescribe some medicine during my radiation when I was having an issue with the inside my mouth being all screwed, so I decided to start taking it again today.
I see Dr. Debo again tomorrow to review the results of the MRI and to schedule the PET scan. I'll discuss the issue I'm having in my mouth and see what his thoughts are on it. The last time I saw the doctor, he prescribed me a weeks worth of Prednisone. The funny thing is, is that during the week I was on the Prednisone, my mouth, sore throat and thick mucus healed up and that was when I was feeling good. When I was finished with the medicine, my symptoms came back and I'm back to feeling lousy again. Maybe this was just a coincidence...who knows.
So to wrap this up...I'm not feeling as good as I was last week. I'm concerned that I jumped the gun in getting the feeding tube removed. I can't even fathom the thought of going through another surgery to get another feeding tube installed and I'm pretty bummed out that my healing process is taking so long.
More to follow...will see the doc tomorrow morning.
What I'm really worried about at this point is the fact that I may have jumped the gun in getting the feeding tube removed. I'm having a hard time eating food again and now have resorted to only eating soft foods. If this gets too much worse and I get back to not being able to eat food, I'm gonna be sh+t out of luck, because there is no more feeing tube for me to nourish myself.
Marjie thinks I might have what they call "Thrush" which is the presence of creamy white, slightly raised lesions in your mouth – usually on your tongue or inner cheeks – but also sometimes on the roof of your mouth, gums, tonsils, or back of your throat.
A lot of patients who go through head and neck radiation get this. I was prescribe some medicine during my radiation when I was having an issue with the inside my mouth being all screwed, so I decided to start taking it again today.
I see Dr. Debo again tomorrow to review the results of the MRI and to schedule the PET scan. I'll discuss the issue I'm having in my mouth and see what his thoughts are on it. The last time I saw the doctor, he prescribed me a weeks worth of Prednisone. The funny thing is, is that during the week I was on the Prednisone, my mouth, sore throat and thick mucus healed up and that was when I was feeling good. When I was finished with the medicine, my symptoms came back and I'm back to feeling lousy again. Maybe this was just a coincidence...who knows.
So to wrap this up...I'm not feeling as good as I was last week. I'm concerned that I jumped the gun in getting the feeding tube removed. I can't even fathom the thought of going through another surgery to get another feeding tube installed and I'm pretty bummed out that my healing process is taking so long.
More to follow...will see the doc tomorrow morning.
Thursday, May 17, 2007
Feeding Tube Removed
We'll I've been feeling pretty good for the last week and eating food regularly, so I decided to call the doctor and see how long it would take for me to get an appointment to remove the feeding tube. Fortunately, after a little sweet talking on my part, they said to come on in and they would go ahead and do it. This was last Monday the 14th.
I was under the impression that there was some sort of an inflatable balloon that would be deflated and then the tube could be pulled out....Wrong!!!!!! There's a hard rubber ring about the size of a wedding ring and about a half inch wide that's inside and prevents the tube from sliding out on it's own. The doctor said he would count to three and then pull......what no pain medication?...oh sh*t!
He started counting and when he got to 1 1/2, he yanked and out came the tube....Boy oh boy did that hurt, but that was it. He said not to eat or drink for an hour, but after that I'd be good to go. The wound oozed some blood and a little goo for a day or so, but it's good to go now and I'm free of all artificial apparatuses in my body.
The thick mucus in my mouth is just about gone and I don't have that constant urge to spit all the time. I figure that since the mucus is gone, it's allowing me to eat normally again. I'm not back to a 100% yet, but getting closer and closer each time.
I'm still experiencing some ringing in the ears like I mentioned in the last post and still have an issue with the pressure in my left ear. It keeps popping and sometimes feels like I have water or something in there. I have the MRI scheduled for this afternoon and then another follow-up appointment with DR. Debo for the results on Monday. Hopefully we'll get this figured out. IRT the cancer, I should also know on Monday when the first PET scan or CT is scheduled for.
That's about it for now....this blog has worked out very well but I think and hope it's life is almost over. I'll come back periodically to update. Thanks again for all your comments, emails, phone calls and prayers!
I was under the impression that there was some sort of an inflatable balloon that would be deflated and then the tube could be pulled out....Wrong!!!!!! There's a hard rubber ring about the size of a wedding ring and about a half inch wide that's inside and prevents the tube from sliding out on it's own. The doctor said he would count to three and then pull......what no pain medication?...oh sh*t!
He started counting and when he got to 1 1/2, he yanked and out came the tube....Boy oh boy did that hurt, but that was it. He said not to eat or drink for an hour, but after that I'd be good to go. The wound oozed some blood and a little goo for a day or so, but it's good to go now and I'm free of all artificial apparatuses in my body.
The thick mucus in my mouth is just about gone and I don't have that constant urge to spit all the time. I figure that since the mucus is gone, it's allowing me to eat normally again. I'm not back to a 100% yet, but getting closer and closer each time.
I'm still experiencing some ringing in the ears like I mentioned in the last post and still have an issue with the pressure in my left ear. It keeps popping and sometimes feels like I have water or something in there. I have the MRI scheduled for this afternoon and then another follow-up appointment with DR. Debo for the results on Monday. Hopefully we'll get this figured out. IRT the cancer, I should also know on Monday when the first PET scan or CT is scheduled for.
That's about it for now....this blog has worked out very well but I think and hope it's life is almost over. I'll come back periodically to update. Thanks again for all your comments, emails, phone calls and prayers!
Saturday, May 12, 2007
Better and better
Just wanted everyone to know that I'm getting better and better each day. Was getting kind of bummed out lately because it seemed that it was taking so long for me to get back to normal, but it seems things are taking a toll for the better.
I'm now able to to eat 80% of my food and for the last two days have only used the feeding tube a couple times. Food doesn't taste and go down perfectly, but boy oh boy things are starting to taste like they should and I have the notion to try to get back to 100% down the gullet and get rid of this tube. Today is Saturday and all food has been in the mouth with nothing down the tube.
We had some really nice weather the last couple days and since I'm feeling more and more like normal, Marjie and I decided to take the boat out to the Chesapeake Bay and do a little flounder fishing. Went out Friday and caught a few fish and ended up taking home one legal flounder. Had such a good time on the boat, breathing salt air again, and bobbing up and down that we decided to get up early and spend Saturday doing the same thing. I felt so good, I decided to have a couple beers.
Things are going so good that were hoping I can continue to eat food normally and if so, call the doctor and get the feeding tube removed in a week or so.
Only thing that is an issue right now is the fact that the ringing in the ears has gotten a little worse. I've had the ringing in the ears ever since they started me on the Chemo called Cisplatin. In fact the doctor stopped the last dose because he was concerned that it could cause further damage. Anyway, during the radiation, I was given 7 doses of Carboplatin, which also causes some ringing in the ears. I didn't complain about it because I know I needed the drugs to rid myself of the Cancer, but anyway, about a week or so ago the ringing in the ears got worse. Actually, it got worse in my left ear. I kept complaining about it and every day it seemed to get worse and worse. I'm also noticing a loss of hearing in that ear.
I called the ENT doctor last week and made an appointment. Dr. Debo (ENT) cleaned out some wax and gave me hearing test which proved that since December (my last hearing test), I have a significant loss of hearing in the left ear. He said that he thinks I might have Eustation Tube Dysfunction which might be caused by the chemo drugs I was taking. What concerns him is that it is only in the left ear and not both.
He prescriobed be a weeks worth of Prednisone, which is a synthetic corticosteroid drug, and then has me set up to have a MRI next week to check and see if there is any nerve damage. More to follow on that.
Wednesday, May 9, 2007
A Major Milestone
It's been a week or so since I updated the blog so figured I'd better since there was a milestone hit yesterday. I finally ate some food. Sunday afternoon I decided I'd try a scrambled egg. Marjie cooked one and seasoned it with a little salt/pepper/garlic mix. Ate about half before the garlic screwed up my tasted buds, but at least got some real food down the gullet. Monday morning I got up and scrambled another egg this time just seasoning it with salt. It went down much better and figured hey, this food deal might be finally working. Microwaved a burrito for lunch and ate half of it, then for dinner cooked up a little pasta with sauce. The spaghetti went down much better than the burrito.
Today, I woke up and had a craving for pancakes...cooked two of them and smothered them in maple syrup. These didn't taste so good, but forced myself to eat half of them. Later in the day while driving around, I stopped at Taco Bell and ordered a burrito. That was nasty...took a few bites and had to throw it away. For dinner tonight, I tried a small bowl of Corn Flakes....it was kind of so so...ate about 8 bites and trashed that. First few bites of food seem to taste ok, but after that it goes to hell in a hand basket. Had 5 bites of pork chop and 3 bites of broccoli with cheese sauce before I gave up for the day. I'm still using the Ensure, but at least I'm getting a little bit of real food down.
Hopefully in a week or so I'll be doing better with the food.
The ringing in ears has gotten worse in the past few days. It's kind of been an off and on again thing for the past few months. I'm also experiencing some pressure in my left ear and have noticed a significant loss of hearing in that ear. The ringing is getting worse and worse and the sound keeps changing. Every time I burp, cough or yawn my left ear pops. Not sure what's going on, but I made an appointment with Dr. Debo tomorrow and hopefully he'll be able to figure something out.
That's about it for now, just trying to get back normal and get on with it.
Today, I woke up and had a craving for pancakes...cooked two of them and smothered them in maple syrup. These didn't taste so good, but forced myself to eat half of them. Later in the day while driving around, I stopped at Taco Bell and ordered a burrito. That was nasty...took a few bites and had to throw it away. For dinner tonight, I tried a small bowl of Corn Flakes....it was kind of so so...ate about 8 bites and trashed that. First few bites of food seem to taste ok, but after that it goes to hell in a hand basket. Had 5 bites of pork chop and 3 bites of broccoli with cheese sauce before I gave up for the day. I'm still using the Ensure, but at least I'm getting a little bit of real food down.
Hopefully in a week or so I'll be doing better with the food.
The ringing in ears has gotten worse in the past few days. It's kind of been an off and on again thing for the past few months. I'm also experiencing some pressure in my left ear and have noticed a significant loss of hearing in that ear. The ringing is getting worse and worse and the sound keeps changing. Every time I burp, cough or yawn my left ear pops. Not sure what's going on, but I made an appointment with Dr. Debo tomorrow and hopefully he'll be able to figure something out.
That's about it for now, just trying to get back normal and get on with it.
Wednesday, May 2, 2007
4 weeks since completion - Dr's Appt
Well here it is 4 weeks since the end of treatment and Marjie and I just got back from seeing Dr. Sinesi (radiation oncologist) and Dr. Atienza (oncologist). I saw Dr. Debo (ENT) last Monday and all are saying things are looking good.
Here is how I feel - my skin is completely healed although I am not growing any hair on two spots on the back of my head between my ears and my collarbone, my entire neck region and jaw, and I may never have the hair grow back there especially on the left side of my neck. Here is the medical explanation for it all. The chemo drugs I initially got (cisplatin, taxotere, and 5FU) attacked the fast growing cells throughout my entire body. Thus my hair cells were affected and I lost my hair, it fell out and stopped growing all over my body while the drugs were in my body. Now that it has been over 4 weeks since I last had them, my hair is growing back, everywhere except in the radiation field of my treatment. The radiation actually damages the hair follicles, and the higher radiation areas the more damage. So only time will tell if hair will grow back on my jaw. My mustache is pitiful, although I am reluctant to shave it off - it might not grow back.
The inside of my mouth and throat are much better, pink, supple, no scarring. My throat is almost pain free. It is this spit issue that I am having the hardest time with. It is still extremely thick and snot-like. And this is one that I am going to have to deal with for a while. The lack of normal saliva also effects my sense of taste - which completely sucks as it has been over 7 weeks since I ate something. Marjie's birthday meal was probably the last time I actually ate anything of substance, and even then things were starting to go haywire with my taste. Unfortunately saliva glands are the first to be affected by the radiation and the last (if at all) to heal. So there is really no idea when my sense of taste will come back and that just makes eating all that more difficult. Dr. Sinesi and Dr. Atienza reinforced the need to keep putting water or liquid in my mouth to help with the dry mouth and thick spit, as well as to start out with liquid or pudding consistency foods. I still have the feeding tube in, and up to 4 cans of ENSURE plus a day, I am so ready to eat, dreaming about food, but nothing tastes good or has been difficult to get down. So far - only water, Gatorade, and the saligen pill. I tried lemonade the other day and it just burned my mouth and throat (will let things heal a little more before trying again). I tried applesauce yesterday morning, and besides not tasting right, I had a hard time getting it down. I actually swallowed a vitamin pill this afternoon - it was difficult, but I got it down. Marjie has been offering to make anything just to get me to try to eat, eventually I'll let her experiment away to figure out what I can taste and swallow, but just not right now.
Today was my last appointment with Dr. Sinesi, he has basically turned all my follow on care over to Dr. Debo. If I need anything from him he said that he is more than happy to see me, and will continue to track my progress through Dr. Debo's reports. Pretty much the rest of my care has been turned back over to Dr. Debo (ENT), to ensure things continue to look good - I'll do a PET or CAT scan before the end of the month, and then see Dr. Debo regularly for the next 5 years.
That's all for now...I can see this blog start to wind down. I'll update it in a couple weeks. Thanks again for all your support!
Dave
Here is how I feel - my skin is completely healed although I am not growing any hair on two spots on the back of my head between my ears and my collarbone, my entire neck region and jaw, and I may never have the hair grow back there especially on the left side of my neck. Here is the medical explanation for it all. The chemo drugs I initially got (cisplatin, taxotere, and 5FU) attacked the fast growing cells throughout my entire body. Thus my hair cells were affected and I lost my hair, it fell out and stopped growing all over my body while the drugs were in my body. Now that it has been over 4 weeks since I last had them, my hair is growing back, everywhere except in the radiation field of my treatment. The radiation actually damages the hair follicles, and the higher radiation areas the more damage. So only time will tell if hair will grow back on my jaw. My mustache is pitiful, although I am reluctant to shave it off - it might not grow back.
The inside of my mouth and throat are much better, pink, supple, no scarring. My throat is almost pain free. It is this spit issue that I am having the hardest time with. It is still extremely thick and snot-like. And this is one that I am going to have to deal with for a while. The lack of normal saliva also effects my sense of taste - which completely sucks as it has been over 7 weeks since I ate something. Marjie's birthday meal was probably the last time I actually ate anything of substance, and even then things were starting to go haywire with my taste. Unfortunately saliva glands are the first to be affected by the radiation and the last (if at all) to heal. So there is really no idea when my sense of taste will come back and that just makes eating all that more difficult. Dr. Sinesi and Dr. Atienza reinforced the need to keep putting water or liquid in my mouth to help with the dry mouth and thick spit, as well as to start out with liquid or pudding consistency foods. I still have the feeding tube in, and up to 4 cans of ENSURE plus a day, I am so ready to eat, dreaming about food, but nothing tastes good or has been difficult to get down. So far - only water, Gatorade, and the saligen pill. I tried lemonade the other day and it just burned my mouth and throat (will let things heal a little more before trying again). I tried applesauce yesterday morning, and besides not tasting right, I had a hard time getting it down. I actually swallowed a vitamin pill this afternoon - it was difficult, but I got it down. Marjie has been offering to make anything just to get me to try to eat, eventually I'll let her experiment away to figure out what I can taste and swallow, but just not right now.
Today was my last appointment with Dr. Sinesi, he has basically turned all my follow on care over to Dr. Debo. If I need anything from him he said that he is more than happy to see me, and will continue to track my progress through Dr. Debo's reports. Pretty much the rest of my care has been turned back over to Dr. Debo (ENT), to ensure things continue to look good - I'll do a PET or CAT scan before the end of the month, and then see Dr. Debo regularly for the next 5 years.
That's all for now...I can see this blog start to wind down. I'll update it in a couple weeks. Thanks again for all your support!
Dave
Tuesday, April 24, 2007
I'm back
We'll I'm back. It"s been a long time since I've felt good enough to get on the computer and update this blog. Thanks to Marjie for keeping it up to date.
I'm finally feeling better. Boy oh boy does that radiation take a toll on you. Seems like I've been counting down the days ever since I started the radiation thinking to myself that I would begin feeling better once I finished, but was I ever wrong. Since the radiation has a cumulative effect, once I finished with the treatment, the radiation was still working strong on my body, hence me not feeling good. I've been doing a lot of research lately on the effects of patients that have or had tonsil cancer and it seems that everyone that got the treatment like I did, spent the next 2-3 months after treatment recovering.
The outside of my neck got extremely burned like you can't imagine. That's all healed up and I'm good to go with that. Looks like a nice tan all around my neck now.
Sore throat...getting better and better each day. I actually drank a glass of water yesterday and have been trying to drink water and Gatorade at least a couple times a day.
Thick mucus and constant spitting....still dealing with that...This is the real issue/problem right now. Water and Gatorade still doesn't taste normal and as soon as I get a sip down, it causes the inside of my mouth to secrete this thick nasty mucus which ends up causing me to spit.
It's been 20 days since my last radiation treatment so hopefully this mucus situation will begin to get better. I can't wait to be able to eat again. I haven't eaten anything for over a month now. It's hard to watch the family eat at dinner time or watch TV commercials about food. I even dream about eating and food.
I still feel fatigued even after not doing much, but at least I'm up off the couch and trying to do things around the house.
That's about it for now, more to follow.
I'm finally feeling better. Boy oh boy does that radiation take a toll on you. Seems like I've been counting down the days ever since I started the radiation thinking to myself that I would begin feeling better once I finished, but was I ever wrong. Since the radiation has a cumulative effect, once I finished with the treatment, the radiation was still working strong on my body, hence me not feeling good. I've been doing a lot of research lately on the effects of patients that have or had tonsil cancer and it seems that everyone that got the treatment like I did, spent the next 2-3 months after treatment recovering.
The outside of my neck got extremely burned like you can't imagine. That's all healed up and I'm good to go with that. Looks like a nice tan all around my neck now.
Sore throat...getting better and better each day. I actually drank a glass of water yesterday and have been trying to drink water and Gatorade at least a couple times a day.
Thick mucus and constant spitting....still dealing with that...This is the real issue/problem right now. Water and Gatorade still doesn't taste normal and as soon as I get a sip down, it causes the inside of my mouth to secrete this thick nasty mucus which ends up causing me to spit.
It's been 20 days since my last radiation treatment so hopefully this mucus situation will begin to get better. I can't wait to be able to eat again. I haven't eaten anything for over a month now. It's hard to watch the family eat at dinner time or watch TV commercials about food. I even dream about eating and food.
I still feel fatigued even after not doing much, but at least I'm up off the couch and trying to do things around the house.
That's about it for now, more to follow.
Friday, April 20, 2007
Friday - 16 days after radiation
The good news is that Dave is definitely doing better. Each day is better than the one before. Here are a couple of picture taken on his birthday. It wasn't easy to get him to smile, but as you can see, I got one.
David and I got Dave a Oregon Scientific weather station, so now he has a project to take care of when he feels up to it. Dave has been enjoying going through The Wire - Season 1, and is now starting on Season 2.
So here we are with some of the "Dave is getting back to normal" milestones:
- he drove the truck to Lowe's and the doctor's so that I could get peat moss and soil for the yard on Wednesday and then again yesterday as I didn't pick up enough peat moss.
- he is complaining that everything is dirty (not that it is, just a couple of things out of place, and the garage needs to be swept)
- he is taking the Nystatin (swish and swallow). He is actually bearing through that med as it still makes him gag a little - but no dry heave sessions.
Had blood work on Wednesday - and his WBC is still down, actually it was at the lowest point that we have had through this entire treatment process, but his platelet count was on the rise, so Dr. Atienza isn't too worried. Just keeping ourselves away from anyone sick, and lots of hand washing. We are going to recheck his blood in two weeks.
So to top everything off - I went and pulled a muscle in my back on Monday moving a pot of flowers. The Nor'easter we had on Monday, was really blowing everything around and ended up toppling over the flowers that I had just planted in it. So I had to move it close to the house to protect it, and didn't lift enough with my legs. Took it fairly easy on Tuesday. It felt better on Wed so David and I dug up the area around the mailbox and planted lavender, daisies, and clemantis in the area, then spread the peatmoss out in the back yard (only covered 1/4 of the yard). It actually did me some good, the movement worked out the stiffness. So Thursday morning I was still fine so, Dave and I got some more peat moss, and I proceeded to distribute it in the back yard. Big mistake on my part, because either I pulled the muscle again when we were loading the stuff in the truck or I twisted and bent wrong when I was spreading the peat moss, because right in the middle of spreading the peat moss my back started screaming at me everytime I want to bend down, or lift my left leg any noticible height - sending the pain across the top of my left hip. I know - I'm not supposed to get sick or hurt - that is Dave's department. It is just frustrating and I am taking it easy - only doing what I have to, and making Dave help. It is amazing what you have a difficult time doing when your back isn't 100%. I had to have Dave tie my shoes for me so that I could go run the needed errands, pretty pathetic.
We'll get through all of this, another week or so and Dave will be eating again. I am just waiting for the day when he asks to try my food or wants a milkshake or something. Thanks for all the cards, birthday wishes and unwavering support. We couldn't have gotten through this without your love and support.
David and I got Dave a Oregon Scientific weather station, so now he has a project to take care of when he feels up to it. Dave has been enjoying going through The Wire - Season 1, and is now starting on Season 2.
So here we are with some of the "Dave is getting back to normal" milestones:
- he drove the truck to Lowe's and the doctor's so that I could get peat moss and soil for the yard on Wednesday and then again yesterday as I didn't pick up enough peat moss.
- he is complaining that everything is dirty (not that it is, just a couple of things out of place, and the garage needs to be swept)
- he is taking the Nystatin (swish and swallow). He is actually bearing through that med as it still makes him gag a little - but no dry heave sessions.
Had blood work on Wednesday - and his WBC is still down, actually it was at the lowest point that we have had through this entire treatment process, but his platelet count was on the rise, so Dr. Atienza isn't too worried. Just keeping ourselves away from anyone sick, and lots of hand washing. We are going to recheck his blood in two weeks.
So to top everything off - I went and pulled a muscle in my back on Monday moving a pot of flowers. The Nor'easter we had on Monday, was really blowing everything around and ended up toppling over the flowers that I had just planted in it. So I had to move it close to the house to protect it, and didn't lift enough with my legs. Took it fairly easy on Tuesday. It felt better on Wed so David and I dug up the area around the mailbox and planted lavender, daisies, and clemantis in the area, then spread the peatmoss out in the back yard (only covered 1/4 of the yard). It actually did me some good, the movement worked out the stiffness. So Thursday morning I was still fine so, Dave and I got some more peat moss, and I proceeded to distribute it in the back yard. Big mistake on my part, because either I pulled the muscle again when we were loading the stuff in the truck or I twisted and bent wrong when I was spreading the peat moss, because right in the middle of spreading the peat moss my back started screaming at me everytime I want to bend down, or lift my left leg any noticible height - sending the pain across the top of my left hip. I know - I'm not supposed to get sick or hurt - that is Dave's department. It is just frustrating and I am taking it easy - only doing what I have to, and making Dave help. It is amazing what you have a difficult time doing when your back isn't 100%. I had to have Dave tie my shoes for me so that I could go run the needed errands, pretty pathetic.
We'll get through all of this, another week or so and Dave will be eating again. I am just waiting for the day when he asks to try my food or wants a milkshake or something. Thanks for all the cards, birthday wishes and unwavering support. We couldn't have gotten through this without your love and support.
Tuesday, April 17, 2007
Happy 45th Birthday
Well Dave is now 45, and although he is not quite at the stage to enjoy his traditional birthday dinner, he is definitely on the upward swing. The skin on his neck is almost back to normal - just slightly red. We got good news yesterday from Dr. Debo (ENT), Dave recovery is encouraging. In fact his tonsils are looking better than expected - very encouraging from Dr. Debo's standpoint. Dr. Debo took a good look at Dave's tonsils (scope down through his nose) and they look really good - pink with minimal swelling. The back of Dave's mouth is really the only thing left swollen and white. Dave still has the fungal infection to knock out, which Dr. Debo wants Dave to take the anti-fungal medicine by mouth - either the lozenge (Mycelex - clotrimazole) or swish -n- swallow type (Nystatin oral). Both Dave is reluctant to try (fear of gagging), and since it is his birthday, I'm not pushing him too hard. Tomorrow he has no excuses - he'll have to take the plunge and try one or the other, which will usher us into the next stage of his recovery (swallowing and eating).
So once we get stuff down his throat, then it is onto eating, remove the feeding tube, gain weight, and then getting back out on the bay for some fishing. Thanks again for all your support through this ordeal - Dave will be back up to speed shortly.
So once we get stuff down his throat, then it is onto eating, remove the feeding tube, gain weight, and then getting back out on the bay for some fishing. Thanks again for all your support through this ordeal - Dave will be back up to speed shortly.
Saturday, April 14, 2007
10 days post radiation treatment
Sorry for the delay in the update. Dave is finally on the upswing and we are starting to notice the healing process. His skin is noticeably better, he still has a few areas that are tender, but the intense burning sensation is now gone. I would put it into the "missed sunscreen" sunburn category, you know those spots that you forget to put sunscreen on (ears, back of the knees or shoulder, right along the edge of your clothes) and then stay out in the sun too long. They are sensitive, but not to the point that you can't do anything. That is about the stage that Dave's skin is in, so that lets him move his head more.
Unfortunately, his throat is not quite healing as fast, which is as we expected. The radiation was directed at his tonsils - thus more intense radiation burns equals longer healing time. Thursday we saw Dr. Hollis (gastroenterologist), and he took a look at the tube and listened to Dave's lungs as well. All is well - as soon as Dave starts eating again (once the swelling in his throat subsides), just to make an appointment and he'll take out the tube in his office, otherwise we are to see him in three months. If we end up making that 3 month appointment - then Dave will have probably gone off the deep end by then. He so wants to eat something, it is to the point that I really cannot eat anything around him without him giving me the sad puppy dog eyes.
Speaking of puppy dog, Coho is doing much better after his back trouble in January, the chiropractor and the restrictive diet we have Coho on seems to be working. He has a ton of energy and is always ready for a walk or a rumble with his rabbit. You know how it seems that dogs seem to imitate their owners, right now Dave is so imitating Coho's behavior in January, just that heart wrenching look that says I feel miserable all the time, and please make it better.
Dave is getting through this, and once he is able to swallow again, I know his spirits and attitude will improve immensely. And maybe I'll be able to get the outside projects done finally...I am pretty much at the point that I need to truck to get the supplies - and Dave's current state will not handle me or David taking the truck to the store (as silly as it may be - that's my husband). Oh well - he'll be back up and going shortly, my garden will just have to wait a couple more weeks - hopefully by mother's day, I'll be able to have the raised beds built and the garden in.
Other side effects that Dave has mentioned - his ears have been ringing constantly now, we think it is from the Carboplatin, and will talk to Dr. Debo about it on Monday. His weight is on a slow decrease - he's down to 153. Dave begrudgingly takes that 4th can of ensure before bed. We are pretty much in a routine of something going in every 2-3 hours. I finally had to write down everything that he took to make sure that he got all of his meds and to stop the disputes about how long it had been since the last session, as it seems that I am constantly coming at him with a glass of something (ensure, juven, pedialyte) to put in the tube.
Well I think I have rambled enough for now. Thanks again for the comments, emails, thoughts, and prayers, your support is nothing short of outstanding.
Unfortunately, his throat is not quite healing as fast, which is as we expected. The radiation was directed at his tonsils - thus more intense radiation burns equals longer healing time. Thursday we saw Dr. Hollis (gastroenterologist), and he took a look at the tube and listened to Dave's lungs as well. All is well - as soon as Dave starts eating again (once the swelling in his throat subsides), just to make an appointment and he'll take out the tube in his office, otherwise we are to see him in three months. If we end up making that 3 month appointment - then Dave will have probably gone off the deep end by then. He so wants to eat something, it is to the point that I really cannot eat anything around him without him giving me the sad puppy dog eyes.
Speaking of puppy dog, Coho is doing much better after his back trouble in January, the chiropractor and the restrictive diet we have Coho on seems to be working. He has a ton of energy and is always ready for a walk or a rumble with his rabbit. You know how it seems that dogs seem to imitate their owners, right now Dave is so imitating Coho's behavior in January, just that heart wrenching look that says I feel miserable all the time, and please make it better.
Dave is getting through this, and once he is able to swallow again, I know his spirits and attitude will improve immensely. And maybe I'll be able to get the outside projects done finally...I am pretty much at the point that I need to truck to get the supplies - and Dave's current state will not handle me or David taking the truck to the store (as silly as it may be - that's my husband). Oh well - he'll be back up and going shortly, my garden will just have to wait a couple more weeks - hopefully by mother's day, I'll be able to have the raised beds built and the garden in.
Other side effects that Dave has mentioned - his ears have been ringing constantly now, we think it is from the Carboplatin, and will talk to Dr. Debo about it on Monday. His weight is on a slow decrease - he's down to 153. Dave begrudgingly takes that 4th can of ensure before bed. We are pretty much in a routine of something going in every 2-3 hours. I finally had to write down everything that he took to make sure that he got all of his meds and to stop the disputes about how long it had been since the last session, as it seems that I am constantly coming at him with a glass of something (ensure, juven, pedialyte) to put in the tube.
Well I think I have rambled enough for now. Thanks again for the comments, emails, thoughts, and prayers, your support is nothing short of outstanding.
Wednesday, April 11, 2007
Wednesday Night - through one week of recovery
Well here it is Wednesday night and Dave is still miserable. Today was blood work at Dr. Atienza's office, and Dave was low on WBC and platelets, so we will have to go back again next week and get it checked again. We talked to the nurse, Sara (she is an absolute angel), and she explained what is going on with Dave's blood - essentially with the chemotherapy the lowest point in blood counts occurs 7-10 days after the treatment. Which is today, and although it is expected, they are still concerned - thus going back next week. So in the mean time we are going to be avoiding anyone who is sick, continue with the consistent hand washing, and doing what is necessary to keep Dave healthy.
My apologies for the missing pictures - every time I go near Dave with a camera, I get the look, and have to acquiesce to his wishes. On the bright side, the skin on his neck is looking better. It is still painful, but it has gone through the flaky stage and is now that tender new skin. He will probably peel/flake again, but I can see progress. The pain in his throat is not easing at all, and is really wearing on his outlook. I know that he is wanting to eat something again, but doesn't want to chance going through the pain of dry heaves when it won't go down. He has had about two dry heave sessions a day, just trying to get the mucus/spit out of his throat, he is still not at the point for it to go down. He hasn't even tried the ice chips as Dr. Debo had suggested.
Tomorrow we are going to see Dr. Hollis (feeding tube). This is the first that we have seen him since Dave started the radiation. I've noticed a little redding around the tube and some minor drainage, which also goes along the same lines as his lower WBC. We saw this same thing happen when Dave was going through chemo back in Nov and Dec. I don't think he is at the antibiotic stage, but we are keeping it clean.
Well that is about all I have for now. Will try to update this again tomorrow after our appointment and maybe I can get Dave to agree to a photo. Take care and thanks again for everything.
My apologies for the missing pictures - every time I go near Dave with a camera, I get the look, and have to acquiesce to his wishes. On the bright side, the skin on his neck is looking better. It is still painful, but it has gone through the flaky stage and is now that tender new skin. He will probably peel/flake again, but I can see progress. The pain in his throat is not easing at all, and is really wearing on his outlook. I know that he is wanting to eat something again, but doesn't want to chance going through the pain of dry heaves when it won't go down. He has had about two dry heave sessions a day, just trying to get the mucus/spit out of his throat, he is still not at the point for it to go down. He hasn't even tried the ice chips as Dr. Debo had suggested.
Tomorrow we are going to see Dr. Hollis (feeding tube). This is the first that we have seen him since Dave started the radiation. I've noticed a little redding around the tube and some minor drainage, which also goes along the same lines as his lower WBC. We saw this same thing happen when Dave was going through chemo back in Nov and Dec. I don't think he is at the antibiotic stage, but we are keeping it clean.
Well that is about all I have for now. Will try to update this again tomorrow after our appointment and maybe I can get Dave to agree to a photo. Take care and thanks again for everything.
Monday, April 9, 2007
Monday - Recovery week 1
Needless to say - Dave is miserable, but still doing very well according to his doctors. We just got back from seeing Dr. Debo (ENT), who is Dave's primary doctor through this whole ordeal, and although Dave is miserable, he is looking as expected. Dave went into this treatment very healthy and although it will take some time, he should be back to 90 percent in a month or so. There is light at the end of the tunnel, just the road isn't very pleasant.
Dave's current state:
- Tonsils/throat: still extremely irritated, he does have a fungal infection (very normal), which we are taking medication for, but Dr. Debo would like to see Dave taking the lozenges instead of the ingested liquid. Once Dave gets past the constant gagging stage, then we will switch to the lozenges. Since this was the first of his side effect - it will probably be the last of the painful side affects to subside. Dave's radiation was directed deep into his neck (tonsils and lymph nodes) so that area has the most damage right now.
- Thick saliva: this one will probably be around for a while. Dr. Debo would like to see Dave trying ice chips to put more fluid in Dave's mouth - hopefully loosen up the spit, make it easier to swallow as well as getting his throat back in the mode of swallowing. Also increasing the fluids at night. As it is now, Dave is sleeping pretty much through the night, but when he wakes up he is very congested and his saliva/snot is thick, causing him to gag and dry heave to get it out of his system. Dave welcomes the sleep, just doesn't relish waking up to the hacking.
- Skin: Dave's neck is definitely in the healing mode and his outer layers of skin are becoming very dry and starting to flake and peel. It is also extremely painful, to the point that I have to be very gentle when I put the cream on his neck. If there was a way that I could spray it on I would. Any sort of rubbing just causes pain. To put the degree of sunburn into perspective...take your worst sunburn, and then neglect to take your skin's warning and continue to go out in the sun every day for a month. Essentially burn upon burn upon burn, so now he has to heal from it...it takes time, and the pain has to be endured.
So Dave is hurting on the inside and outside of his neck - moving his head, stretching the skin, swallowing, all bring about pain - although the good thing is that our bodies are remarkable and this will all heal - time, patience, hydration, and nutrition. We are taking things one day at a time and Dave should start to feel better in a week - until then we press on.
Pictures in tomorrow's update.
Dave's current state:
- Tonsils/throat: still extremely irritated, he does have a fungal infection (very normal), which we are taking medication for, but Dr. Debo would like to see Dave taking the lozenges instead of the ingested liquid. Once Dave gets past the constant gagging stage, then we will switch to the lozenges. Since this was the first of his side effect - it will probably be the last of the painful side affects to subside. Dave's radiation was directed deep into his neck (tonsils and lymph nodes) so that area has the most damage right now.
- Thick saliva: this one will probably be around for a while. Dr. Debo would like to see Dave trying ice chips to put more fluid in Dave's mouth - hopefully loosen up the spit, make it easier to swallow as well as getting his throat back in the mode of swallowing. Also increasing the fluids at night. As it is now, Dave is sleeping pretty much through the night, but when he wakes up he is very congested and his saliva/snot is thick, causing him to gag and dry heave to get it out of his system. Dave welcomes the sleep, just doesn't relish waking up to the hacking.
- Skin: Dave's neck is definitely in the healing mode and his outer layers of skin are becoming very dry and starting to flake and peel. It is also extremely painful, to the point that I have to be very gentle when I put the cream on his neck. If there was a way that I could spray it on I would. Any sort of rubbing just causes pain. To put the degree of sunburn into perspective...take your worst sunburn, and then neglect to take your skin's warning and continue to go out in the sun every day for a month. Essentially burn upon burn upon burn, so now he has to heal from it...it takes time, and the pain has to be endured.
So Dave is hurting on the inside and outside of his neck - moving his head, stretching the skin, swallowing, all bring about pain - although the good thing is that our bodies are remarkable and this will all heal - time, patience, hydration, and nutrition. We are taking things one day at a time and Dave should start to feel better in a week - until then we press on.
Pictures in tomorrow's update.
Saturday, April 7, 2007
Saturday Morning - day 3 after finishing treatment
Dave has had a miserable few days. His neck is extremely sore and tight, to the point that he doesn't want to turn his neck or even talk. Wednesday and Thursday he was able to get some sleep, with the help of the pain medicine. I actually got a fairly good night sleep on Thursday as well. Dave still has the extremely thick spit, which he is hacking up on a fairly regular basis, and in the morning, he has been racked with dry heaves trying to get the mucous out of the back of his throat, which of course just wear him down.
The skin on Dave's neck seems to be drying out. Pretty much as your skin would after an intense sunburn - the outer layer gets tough and eventually peels off. Dave is entering that stage, but as his skin cracks off - the skin underneath is very raw, tender, and painful. A perfect example of that is when Dave gets out of the shower, his neck is extremely painful until we get the cream (Biofine) on his skin, and although he cringes through the application, it does provide relief, by cutting through the sting and softening up his skin.
Everything is still going in through the tube. He's pretty good about getting the stuff in, it is just getting enough of the stuff in. At a minimum he is getting 3 cans of ENSURE Plus, 2 pks (12oz) of Juven, and all his meds, it is that 4th can of ENSURE Plus that may or may not get done. As always, attitude is everything, and of course, when he doesn't want to do something, he can be stubborn about it, especially when he is in pain.
David and I are continuing on with everything else. David decided on staying close to home for college and is going to attend Old Dominion University in Norfolk. Prom is right around the corner in May, so he is working on his plans for that, then we have his graduation in June. I can't believe my baby is grown up. Other than that, we are still working on the yard (garden, flowers, lawn) and the house (painting and minor repairs). It is kind of like when Dave was on deployment last, only this time he is here and pretty vocal about his opinions. Well we are pushing on as always, and will be very glad when Dave is back on his feet again. Thanks for all the support, love, comments, prayers, cards and gifts, they have been so very helpful through this entire ordeal. Thank you again.
The skin on Dave's neck seems to be drying out. Pretty much as your skin would after an intense sunburn - the outer layer gets tough and eventually peels off. Dave is entering that stage, but as his skin cracks off - the skin underneath is very raw, tender, and painful. A perfect example of that is when Dave gets out of the shower, his neck is extremely painful until we get the cream (Biofine) on his skin, and although he cringes through the application, it does provide relief, by cutting through the sting and softening up his skin.
Everything is still going in through the tube. He's pretty good about getting the stuff in, it is just getting enough of the stuff in. At a minimum he is getting 3 cans of ENSURE Plus, 2 pks (12oz) of Juven, and all his meds, it is that 4th can of ENSURE Plus that may or may not get done. As always, attitude is everything, and of course, when he doesn't want to do something, he can be stubborn about it, especially when he is in pain.
David and I are continuing on with everything else. David decided on staying close to home for college and is going to attend Old Dominion University in Norfolk. Prom is right around the corner in May, so he is working on his plans for that, then we have his graduation in June. I can't believe my baby is grown up. Other than that, we are still working on the yard (garden, flowers, lawn) and the house (painting and minor repairs). It is kind of like when Dave was on deployment last, only this time he is here and pretty vocal about his opinions. Well we are pushing on as always, and will be very glad when Dave is back on his feet again. Thanks for all the support, love, comments, prayers, cards and gifts, they have been so very helpful through this entire ordeal. Thank you again.
Thursday, April 5, 2007
Finally done with the treatments
Well - yesterday was the last of the treatments - no more radiation or chemo. Finally, Dave can focus on mending. We met with Dr. Sinesi (radiation oncologist) after the final treatment and he thinks that Dave is the first head and neck radiation patient he has had to go through the entire treatment without a break. All of the radiation technicians said the same thing, essentially that Dave is the first that they can remember. So in review - here are some of the factors that helped with our success:
- IMRT: focused the radiation energy at the specific targets, while minimizing the damage to the surrounding tissues.
- Dave's age: young, healthy, etc
- Juven: daily consumption of the nutrition drink. Juven is designed to help in the healing process. Dave started taking this as soon as we started the fitting. Two packets a day, and he is still taking it.
- XClair / Biofine: Dave was and is still religious about putting it on daily - He used the XClair until his neck became too tender / burned - through week 5 to tolerate the application of this semi-thick cream. We are now using the Biofine due to creaminess - very easy to slather on his neck - relieving the burning sensation. The goal is to prevent his skin from drying out as it heals.
- Salagen: This stimulates the production of saliva, and although we don't know what it would be like without it, we really wouldn't want to find out. Dave's mouth is slightly dry, and he is hacking up spit through out the day and night.
- Home mouth rinse: 1 quart water + 1 tsp salt + 1 tsp baking soda. Dave rinses his mouth out continually throughout the day with this. It helps keep his mouth fresh and moist and get's Dave's mouth closer to a normal condition.
- Biotene Mouth rinse: Also a great product that helps out the state of Dave's mouth. It has a minty flavor, so it is a good change and helps to refresh Dave's mouth.
Even though the treatments are done, Dave will still have to deal with the repercussions of the last 10 treatments over the next two weeks. Radiation treatments have about a two week lag time, on the side effects. And Dave finally reached his max pain tolerance yesterday as well, and asked for help. Dr. Sinesi prescribed a liquid form of Vicadin to take when the pain gets too much. Dave took some last night before bed and only woke up a couple of times to hack up a spit ball or two. Dave is looking at only using it when the pain gets too much. Dr. Sinesi also stated that Dave should be back to about 90% by the end of the month. We should start seeing the outside of his neck healing faster than the inside, which just makes sense as it was the last to get sore and unbearable. We should start seeing improvement with his throat in a couple of weeks. In the meantime we are continuing to use the feeding tube and Dave is up to 4 cans of ENSURE Plus a day. I am figuring that we are looking at about three more weeks with the tube, but I know that as soon as Dave can get that tube out he will - great motivation to get the throat healed and back to eating.
Going through this whole process, I am glad that Dr. Sinesi has his feeding tube policy for head and neck patients. It has helped us minimize Dave's weight loss - a total of 14 lbs in the 7 weeks. But realistically speaking, Dave is only down about 6 or so pounds, because he increased his weight prior to the treatment, and his reluctance and stubbornness on the Ensure feedings added to the weight loss. Even though I was right on what he needed nutritionally, he had to hear it from the dietitian for it to be true, valid, or for him to act upon. Oh, well - when you are sick, you don't want to listen to your spouse anyway. He is getting what he needs now, and once he is back up to par, it is back to the gym to build back up his muscles - his arms and legs have become a little skinny over this ordeal.
Thanks again for all the support from everyone.
- IMRT: focused the radiation energy at the specific targets, while minimizing the damage to the surrounding tissues.
- Dave's age: young, healthy, etc
- Juven: daily consumption of the nutrition drink. Juven is designed to help in the healing process. Dave started taking this as soon as we started the fitting. Two packets a day, and he is still taking it.
- XClair / Biofine: Dave was and is still religious about putting it on daily - He used the XClair until his neck became too tender / burned - through week 5 to tolerate the application of this semi-thick cream. We are now using the Biofine due to creaminess - very easy to slather on his neck - relieving the burning sensation. The goal is to prevent his skin from drying out as it heals.
- Salagen: This stimulates the production of saliva, and although we don't know what it would be like without it, we really wouldn't want to find out. Dave's mouth is slightly dry, and he is hacking up spit through out the day and night.
- Home mouth rinse: 1 quart water + 1 tsp salt + 1 tsp baking soda. Dave rinses his mouth out continually throughout the day with this. It helps keep his mouth fresh and moist and get's Dave's mouth closer to a normal condition.
- Biotene Mouth rinse: Also a great product that helps out the state of Dave's mouth. It has a minty flavor, so it is a good change and helps to refresh Dave's mouth.
Even though the treatments are done, Dave will still have to deal with the repercussions of the last 10 treatments over the next two weeks. Radiation treatments have about a two week lag time, on the side effects. And Dave finally reached his max pain tolerance yesterday as well, and asked for help. Dr. Sinesi prescribed a liquid form of Vicadin to take when the pain gets too much. Dave took some last night before bed and only woke up a couple of times to hack up a spit ball or two. Dave is looking at only using it when the pain gets too much. Dr. Sinesi also stated that Dave should be back to about 90% by the end of the month. We should start seeing the outside of his neck healing faster than the inside, which just makes sense as it was the last to get sore and unbearable. We should start seeing improvement with his throat in a couple of weeks. In the meantime we are continuing to use the feeding tube and Dave is up to 4 cans of ENSURE Plus a day. I am figuring that we are looking at about three more weeks with the tube, but I know that as soon as Dave can get that tube out he will - great motivation to get the throat healed and back to eating.
Going through this whole process, I am glad that Dr. Sinesi has his feeding tube policy for head and neck patients. It has helped us minimize Dave's weight loss - a total of 14 lbs in the 7 weeks. But realistically speaking, Dave is only down about 6 or so pounds, because he increased his weight prior to the treatment, and his reluctance and stubbornness on the Ensure feedings added to the weight loss. Even though I was right on what he needed nutritionally, he had to hear it from the dietitian for it to be true, valid, or for him to act upon. Oh, well - when you are sick, you don't want to listen to your spouse anyway. He is getting what he needs now, and once he is back up to par, it is back to the gym to build back up his muscles - his arms and legs have become a little skinny over this ordeal.
Thanks again for all the support from everyone.
Tuesday, April 3, 2007
Finally - down to only one treatment left.
Well here it is Tuesday evening, and we are looking at the last radiation and chemo treatment tomorrow. And the bottom line is that Dave is miserable. He is trying not to talk, his neck is extremely sore - inside and out -, and he desperately wants to feel better. Tomorrow we will see Dr. Sinesi (radiation oncologist) and I think the biggest concern that I have is the fact that Dave is unable to swallow or get anything down his throat.
We got a call from the American Cancer Society nutritionist today, and since Dave is down about 7 pounds since we talked to her a month ago, she wants us to increase the Ensure to at least 4 cans per day - preferably 5. Dave is taking on three right now. Other than that he is doing pretty good on keeping his fluid consumption up and he is still trying to walk and move about to keep his body somewhat active and his muscles engaged.
Speaking of muscles engaged - I think some of the problem with Dave being unable to swallow is that was getting into the habit of not swallowing unless absolutely necessary (the 4 times a day needed to take his pills) , primarily due to the fact that his throat really hurt - swallowing razor blades is how he described it. Like I said we will see the doctor tomorrow and we'll have a better idea of what is going on with that. We also have an appoint with his gastronomical doctor next week, so there is another avenue for thoughts. But as it is right now - everything is crushed up and fed through the tube - Dave is very proficient at feeding himself with the tube - pretty much he puts something in the tube every two hours or so.
Other areas is that the sprinkler system is now in and it is now up to me to get our yard in order. With all the work that we had done over the past couple of months, the yard is not looking like the typical Vigal yard - just a lot of dirt among the grass, no flowers, weeds, and the sprinkler system left some high spots in the yard. So David and I have our work cut out for us, time to get the mower out, visit the local nursery, and get our hands dirty.
Well I've bounced around to a lot of topics. We are surviving this, nerves have been stretched, tempers have flared, and alternatives and comprises abound. Each day is different and each struggle only makes us stronger - I will be so glad when all of this is in the rear view mirror. Thanks for all the support.
We got a call from the American Cancer Society nutritionist today, and since Dave is down about 7 pounds since we talked to her a month ago, she wants us to increase the Ensure to at least 4 cans per day - preferably 5. Dave is taking on three right now. Other than that he is doing pretty good on keeping his fluid consumption up and he is still trying to walk and move about to keep his body somewhat active and his muscles engaged.
Speaking of muscles engaged - I think some of the problem with Dave being unable to swallow is that was getting into the habit of not swallowing unless absolutely necessary (the 4 times a day needed to take his pills) , primarily due to the fact that his throat really hurt - swallowing razor blades is how he described it. Like I said we will see the doctor tomorrow and we'll have a better idea of what is going on with that. We also have an appoint with his gastronomical doctor next week, so there is another avenue for thoughts. But as it is right now - everything is crushed up and fed through the tube - Dave is very proficient at feeding himself with the tube - pretty much he puts something in the tube every two hours or so.
Other areas is that the sprinkler system is now in and it is now up to me to get our yard in order. With all the work that we had done over the past couple of months, the yard is not looking like the typical Vigal yard - just a lot of dirt among the grass, no flowers, weeds, and the sprinkler system left some high spots in the yard. So David and I have our work cut out for us, time to get the mower out, visit the local nursery, and get our hands dirty.
Well I've bounced around to a lot of topics. We are surviving this, nerves have been stretched, tempers have flared, and alternatives and comprises abound. Each day is different and each struggle only makes us stronger - I will be so glad when all of this is in the rear view mirror. Thanks for all the support.
Sunday, April 1, 2007
Starting the final week of radiation - 3 sessions left
Well it is Sunday and Dave has 30 sessions under his belt - 3 to go. Dave has been trying to do stuff around the house when he has the energy. Since Wednesday, we have had a local company out putting in a sprinkler system in our yard. Dave has been very diligent about watching them work and keeping himself out of the sun. The contractor is almost done - they'll be out on Monday to finish up, but our driveway was covered with dirt. So after they stopped yesterday, Dave and I got the power washer out and washed the back patio, front porch, walk, and driveway. We would alternate with the power washer and I had fun moving our sun umbrella around the driveway to keep Dave out of the sun while he washed.
The unfortunate side is that the side affects are getting worse by the day. His neck is extremely red, sore, and 1st and 2nd degree burns which makes it difficult for him to move his neck. For the most part his neck is a deep brown red (looks like a deep tan with a sun burn), there are numerous areas that are starting to blister up.
And the back of his neck has peeled as well. We are being very diligent about putting the cream on it. Dave is using the Biofine as it goes on easier than the XClair. We are also putting aloe on his neck as well. He has also switched to wearing tank tops to ensure nothing rubs on his neck.
His throat continues to be extremely sore, and he has been having a really hard time swallowing. Up until yesterday evening Dave has been able to swallow his Salagen pill. This morning it seemed to get caught 1/2 way down and his body decided to try to bring it back up and he spent a few minutes dry heaving with nothing coming up. He was extremely spent after the ordeal. So we switched to crushing it up as well and sending it through the tube.
His spit continues to be thick, and varies in color from clear/white to yellow and occasionally will be tinged with blood. I am trying not to cringe when he hacks and gags trying to get the spit out of the back of his throat. The strain is taking it's toll on Dave. He has pretty much spent the day on the couch - with not much energy or desire to do anything. We maybe went overboard yesterday with the power washer.
Overall - we'll be glad when this is done, and of course the sooner the better. All the comments, cards, emails, prayers and wishes are greatly appreciated. Thanks for all the support - we will be through this soon.
Thursday, March 29, 2007
4 to go
We'll I'm feeing much better today. Throat is still awfully sore but seems like some of the mucus stuff in my mouth has subsided a little. I'm now thinking some of the excess mucus may have been caused by allergies. All our trees in the area are in full bloom right now and heavens knows what else. I never had allergies since I moved away from North Carolina and maybe there back. Anyway, whatever the case may be, mucus has subsided a little and I'm feeling much better. What I am feeling is serious dry mouth...spit looks like cotton balls. Fun fun!!!
Neck is really really red and looking like a sunburn from hell. Still using the Xclair cream and that seems to be working. Marjie noticed this afternoon that it's beginning to peel but I should be able to deal with it.
Saw Dr. Sinesi today after treatment and he said again that he finds it hard to believe that I've been able to make through all these treatments without a break. He said that as far as radiation therapy goes, head and neck is by far the worst to get and he can't even remember when someone was able to make it without a break. He also gave me some words of encouragement about the healing process and said I should start seeing positive results in 4-6 days. He said that the mouth would be the first to heal. He looked inside my mouth and said everything looks good/normal...he's seeing lots of redness and whiteness which is worse than the red, but says everything looks on track to heal properly. Said that I should start feeling much better after 2 weeks and be able to start eating again and then by a month I should be at almost 90%....
That's all for now, more to follow...
Neck is really really red and looking like a sunburn from hell. Still using the Xclair cream and that seems to be working. Marjie noticed this afternoon that it's beginning to peel but I should be able to deal with it.
Saw Dr. Sinesi today after treatment and he said again that he finds it hard to believe that I've been able to make through all these treatments without a break. He said that as far as radiation therapy goes, head and neck is by far the worst to get and he can't even remember when someone was able to make it without a break. He also gave me some words of encouragement about the healing process and said I should start seeing positive results in 4-6 days. He said that the mouth would be the first to heal. He looked inside my mouth and said everything looks good/normal...he's seeing lots of redness and whiteness which is worse than the red, but says everything looks on track to heal properly. Said that I should start feeling much better after 2 weeks and be able to start eating again and then by a month I should be at almost 90%....
That's all for now, more to follow...
Tuesday, March 27, 2007
6 sessions left, but now what????
6 more to go. I can hardly wait, but I'm feeling worse and worse as the days go by and now starting to ask the question to my docs as to when I can expect feeling better. Unfortunately, I haven't got one good sign that things will be getting any better for me for at least a month or so. In fact, what I'm finding out is that things may and more than likely get worse! Much worse. This thick mucus stuff in my throat is the worst. I'm constantly gagging and hacking the stuff up. Sleep is now what it used to be as I know wake every hour or so to spit up in the cup or run to the sink to hack up a loogy. My throat is so sore I haven't been able to put anything down it in such a long time.
I finally went to my Google Groups website and have been asking other tonsil cancer patients about what their experiencing and unfortunately, again, I'm getting the same kind of responses. Here is the latest I received from Stuart this morning:
"This is a message I sent Dave which may be helpful to others going through the later stages of treatment or the first few months thereafter.
Boy oh Boy does that worry me. So even though I'm almost finished with the radiaiton it's looking like I might not even be close to being out of the woods! :(
I finally went to my Google Groups website and have been asking other tonsil cancer patients about what their experiencing and unfortunately, again, I'm getting the same kind of responses. Here is the latest I received from Stuart this morning:
"This is a message I sent Dave which may be helpful to others going through the later stages of treatment or the first few months thereafter.
Hi Dave,
My name is Stuart. I'm a physician who was treated recently for tonsil ca so I have been through exactly what you are describing. I finished IMRT at the end of October 2006 and was absolutely miserable with that thick mucous you are describing for about 2 months. It will choke you and it is very difficult to expectorate.
It is due to several things: Firstly, the mucous from your nose will drain down the back of your throat and will not be thinned out as there is no saliva. There is an increased production of nasal secretions that will probably linger for the next 2-3 months following completion of your therapybefore it starts subsiding. Secondly, your saliva has 2 components: a serous component which is thin, and a mucinous component which is thicker. Both normally work together to breakdown your food and lubricate your mouth and throat. The thin or serous component is what is usually gone after radiation therapy. You are left with the mucinous or thick component plus the mucous draining down from your nose. The third thing is due to the ongoing radiation. The tissues in the back of your pharynx are swollen and inflamed and this makes it difficult to swallow anything. Unfortunately, I found out that this does not go away within a week or two after completing radiation. I have spoken to several radiation oncology colleagues and what happens is that the radiation continues to work its effects on your tissues for months after you finish treatment. It is as if your tissues absorb the radiation and then slowly release it. Hence, you will be miserable for the first 2-3 months after therapy. I ended up needing my feeding tube for about 2 1/2 months after completing therapy as that is the really rough period. You will also be very fatigued for the first three months following RT.
What can you do?
Well, be careful around sick people. If you catch a cold as I did several times the mucous coming back from the nose becomes even more tenacious. If the mucous coming out of your mouth starts turning green or yellow ask your physician for an antibiotic for purulent rhinitis (I usually took augmentin elixir down the tube). Stay well hydrated. I put alot of gatorade down the tube with a toomey syringe (about 400 ml at a time usually 4-5 times per day). Make sure you do this frequently. As your mouth will always feel dry you will only know you are well-hydrated by the number of times you urinate, the volume and color. You want to make sure it stays fairly clear. You will not sleep well at all for the last weeks of radiation and probably the next few months after therapy due to the choking issues. I was frankly, too scared to go to sleep and sat up in a positional bed reading, as you stated with a bucket at my side. I would get out of bed very frequently, dragging my IV pole with pump for the tube feedings with me to the bathroom to gargle with initially undiluted biotene mouthwash, followed by hot water with a sip of biotene and finally hot water alone. This will be a very tough time for you and the repetitive trips to the sink will wear you thin and batty. Many people going through treatment become very anxious and depressed during this period. I would occasionally take a 25 mg benadryl tablet and cut it in half and crush it and put it down the tube. This will help a little in that it may control the thick mucous from the nose for a few hours, make you sleepy and allow you to rest a little but it can also dry your mouth. I would also take Ambien 10 mg (not the CR because you can't crush it) break it in half, crush it and put it down the tube. This will allow you about 2-3 hours of sleep before you will have to wake up and go gargle. I would then crush and take the other half of the ambien down the tube. I took roxicet elixir down the tube, it didn't do much for the pain but it did have a mild relaxing effect. I also wore the duragesic patches for a while toward the end of treatment and for about a month after as the pain in the pharynx was very uncomfortable. Whatever pain meds you take, make sure you cut the dose back slowly when you feel you no longer need them as you can have withdrawl effects. The very thick mucous you are experiencing now will be very debilitating as you can't swallow it (you'll start gagging and choking). Once the thick mucous from the nose begins to subside you will still be left with the mucinous component of your saliva which is thicker than normal saliva and not very helpful for swallowing or lubricating your throat. At that point, hopefully the inflammation will have gone down some and you will be able to swallow water. The dry mouth may not seem too bad at that point but it will get worse before it gets better. As mentioned above the radiation continues to work on your salivary glands for months after RT ends. Typically, saliva production decreases for the first 3 months following RT and then plateaus at its nadir for the next 6-9 months before it starts to come back and then it can take up to 2 years before whatever you are going to recover (I've been told with amofostine and IMRT about 60-70% of what it was before treatment but not everybody recovers the same amount). I hope this helps somewhat. I always felt that that having the best information helped me cope but it is still very tough, particularly the phase you are going through.
Best wishes,
Stuart"
Boy oh Boy does that worry me. So even though I'm almost finished with the radiaiton it's looking like I might not even be close to being out of the woods! :(
Saturday, March 24, 2007
Finished with week 5 - on to Week 6
It's Marjie again, and since Dave hasn't updated this since Wednesday, an update is due. Overall Dave is doing well - thankfully we are done with Week 5. Wow 25 treatments done, 8 to go (YEAH!!!!!). Overall Dave is still looking good - pretty much maintaining his weight and going through the inevitable roller coaster of good moments and bad. I had to badger him to put the post in on Wednesday. Here is this week's photo:
We saw Dr. Amin (radiation oncologist) on Friday and he confirmed that Dave only had to do 33 sessions, so if there is no delays then we will be done with the radiation a week from Wednesday. He is impressed on how the treatment is going. Dave is actually doing really well with the treatment and we have been able to keep his side effects to a minimum. His side effects continue to be the very thick spit, and it has reached the point that it gags him as he is trying to get it out of his throat. He has had a few episodes of dry heaves as a result of the spit. We did mention about the medication for Dave's throat causing him to gag - and Dr. Amin took a look and okayed the fact that Dave wasn't taking the meds. Dave's routine of water and rinsing is sufficent to keep things in check.
Dave's neck is still looking very good - slight redness, which darkens if he goes outside. He has been very good about putting the XClair cream on twice a day. The area is not really sensitive to touch, although he is careful about the shirts he wears to ensure that nothing rubs against his neck excessively. So my husband is becoming a redneck. We have noticed little scabs along the top of his back and shoulders - thinking that it may be from the radiation table - and the doctor did look at them and was not concerned - just put aloe on them to help healing.
Dr. Amin also stated that Dave's weight was actually up 1/2 a pound from last week - so the we are on the right track with Dave's diet (3 ENSURE Plus, 2 glasses of JUVEN, and a daily walk). Actually we found that Walmart's generic (EQUATE) is just the same and about $1.50 cheaper per 6 pack. It comes in cans rather than plastic bottles, and we can recycle the cans and can't recycle the bottles in this area.
The final area is Dave's attitude and energy level. He is sleeping a lot more lately, more out of boredom, I think, rather than fatigue. He is tired of dealing with the symptoms. He is getting out though. He helped with the yard yesterday morning (edged the lawn) and then mowed the back yard(riding lawn mower). We have been going on a walk in the late evening as the sun goes down. We are also having a sprinkler system put in, and Friday they came out and dug the well for the system, Dave set up a spot to supervise it in the shade, then he proceeded to start watering the backyard with the sprinkler and had fun for the next couple of hours telling me to move the sprinkler every 30 minutes or so.
Overall things are going well - just ready for this to be all over. Thanks again for all the thoughts, comments, prayers, cards, emails, and support.
We saw Dr. Amin (radiation oncologist) on Friday and he confirmed that Dave only had to do 33 sessions, so if there is no delays then we will be done with the radiation a week from Wednesday. He is impressed on how the treatment is going. Dave is actually doing really well with the treatment and we have been able to keep his side effects to a minimum. His side effects continue to be the very thick spit, and it has reached the point that it gags him as he is trying to get it out of his throat. He has had a few episodes of dry heaves as a result of the spit. We did mention about the medication for Dave's throat causing him to gag - and Dr. Amin took a look and okayed the fact that Dave wasn't taking the meds. Dave's routine of water and rinsing is sufficent to keep things in check.
Dave's neck is still looking very good - slight redness, which darkens if he goes outside. He has been very good about putting the XClair cream on twice a day. The area is not really sensitive to touch, although he is careful about the shirts he wears to ensure that nothing rubs against his neck excessively. So my husband is becoming a redneck. We have noticed little scabs along the top of his back and shoulders - thinking that it may be from the radiation table - and the doctor did look at them and was not concerned - just put aloe on them to help healing.
Dr. Amin also stated that Dave's weight was actually up 1/2 a pound from last week - so the we are on the right track with Dave's diet (3 ENSURE Plus, 2 glasses of JUVEN, and a daily walk). Actually we found that Walmart's generic (EQUATE) is just the same and about $1.50 cheaper per 6 pack. It comes in cans rather than plastic bottles, and we can recycle the cans and can't recycle the bottles in this area.
The final area is Dave's attitude and energy level. He is sleeping a lot more lately, more out of boredom, I think, rather than fatigue. He is tired of dealing with the symptoms. He is getting out though. He helped with the yard yesterday morning (edged the lawn) and then mowed the back yard(riding lawn mower). We have been going on a walk in the late evening as the sun goes down. We are also having a sprinkler system put in, and Friday they came out and dug the well for the system, Dave set up a spot to supervise it in the shade, then he proceeded to start watering the backyard with the sprinkler and had fun for the next couple of hours telling me to move the sprinkler every 30 minutes or so.
Overall things are going well - just ready for this to be all over. Thanks again for all the thoughts, comments, prayers, cards, emails, and support.
Wednesday, March 21, 2007
2 weeks/10 treatments left
It's been a while since I last posted anything in this blog and thankfully Marjie has kept it going for me. I've just been feeling so run down these past couple weeks and just haven't had the energy to do much of anything. Seems as if I only feel ok is when I'm sleeping. I wish there was some kind of magic pill I could take that would knock me out for 2 weeks at a time. It would be much easier to handle that way.
Today was my 23rd session of radiation and 5th chemo session. I have 10 more sessions to go and 2 more chemo sessions all ending on the 4th of April. My throat is so sore and tastes buds totally gone that the only way I'm getting any nourishment is through the feeding tube. Can't even remember the last time I ate anything. Basically, I have 3 cans of Equate (Walmart Generic), a day. Vanilla for breakfast, Strawberry for Lunch and Chocolate for Dinner. None of which I can taste unless I burp or something. The only thing going down my gullet is H2O and my 2 daily doses (Glasses) of Juven.
My energy level has significantly dropped and I spend most of my time laying on the couch watching TV. I know, I know it sounds pretty pathetic. I have to carry around this spit cup which I'm constantly hacking in and spitting up this thick mucus all day and night. I cough so hard and have been dry heaving so much lately that I'm now coughing up a little blood every once in a while. I'd have to say that the nausea, leg pains, loss of hair, sore throat, mouth sores, and everything else bad that I've experienced in the last 5 months...the worst is this thick mucus in my mouth and the fact that everything I've tried to eat tastes like poisen. Actually with my throat so sore right now, I don't think I could get anything down the ole gullet even if I wanted to.
The nurses mentioned to me this afternoon that I'm really impressing everyone at the Cancer Treatment Center because of the fact that in their opinion I'm doing so good with the treatment. The thing a lot of it has to do with my age, but they all say that I'm breezing right through this.
All I can focus on these days is the fact that there is light at the end of the tunnel and I'm getting there one day at a time.
Not too much more going on with me....just doing my time I guess...Thanks for all the prayers and support each and everyone of you are giving me and my family..we all appreciate it!
Today was my 23rd session of radiation and 5th chemo session. I have 10 more sessions to go and 2 more chemo sessions all ending on the 4th of April. My throat is so sore and tastes buds totally gone that the only way I'm getting any nourishment is through the feeding tube. Can't even remember the last time I ate anything. Basically, I have 3 cans of Equate (Walmart Generic), a day. Vanilla for breakfast, Strawberry for Lunch and Chocolate for Dinner. None of which I can taste unless I burp or something. The only thing going down my gullet is H2O and my 2 daily doses (Glasses) of Juven.
My energy level has significantly dropped and I spend most of my time laying on the couch watching TV. I know, I know it sounds pretty pathetic. I have to carry around this spit cup which I'm constantly hacking in and spitting up this thick mucus all day and night. I cough so hard and have been dry heaving so much lately that I'm now coughing up a little blood every once in a while. I'd have to say that the nausea, leg pains, loss of hair, sore throat, mouth sores, and everything else bad that I've experienced in the last 5 months...the worst is this thick mucus in my mouth and the fact that everything I've tried to eat tastes like poisen. Actually with my throat so sore right now, I don't think I could get anything down the ole gullet even if I wanted to.
The nurses mentioned to me this afternoon that I'm really impressing everyone at the Cancer Treatment Center because of the fact that in their opinion I'm doing so good with the treatment. The thing a lot of it has to do with my age, but they all say that I'm breezing right through this.
All I can focus on these days is the fact that there is light at the end of the tunnel and I'm getting there one day at a time.
Not too much more going on with me....just doing my time I guess...Thanks for all the prayers and support each and everyone of you are giving me and my family..we all appreciate it!
Sunday, March 18, 2007
Done with Week 4 - On To Week 5
It's Marjie again - We are done with Week 4 (20 fractals done, and actually we either have 13 or 15 fractals to go) and I am so glad. We had a significant weather change on Friday - the temperatures dropped 20 degrees Thursday night between 8:30 and 9:30, and we woke up Friday to the temps in the 30's (Thursday's high was 86 degrees). With the low temps also came the gray and rain...and Dave's mood followed the trend of the weather - gray and gloomy. He is getting tired of the thick spit - which is getting to the point that he almost gags on it trying to clear his throat. The fact that food still taste's awful and he has no desire to experiment to find something passable. It's a chore just eating scrambled eggs. The new meds that Dr. Amin prescribed also make him nauseous. The bottom line is that he is just tired of this - and it is pretty much 100% mental attitude now. As the pictures below show his mood:
His neck is still doing well - just starting to get red, but no blisters or open sores. He has been very good about putting the cream on his neck. I just wish he was a diligent at taking his meds.
Saturday Dave remained in a somewhat gloomy mood, puttered around the garage for a little while, and then sat down and watch the NASCAR race. Took a dip in the Hot Tub before bed - hoping to relieve his spirits.
Here it is Sunday, and although he is up and about he is not in the mood to do much of anything - least of all update the Blog. He did however spend some time reading through his email - the comments on the blog, and visited the Tonsil Cancer Support Group pages. I'll get him outside and moving today. We picked up 4 trees on Friday - a birch, two dwarf peach, and a willow tree to plant in the back yard. We need to get it done before we get the sprinkler system in. Then I am on the search for 6 or so half whiskey barrels to start the garden up again, or I'll have to convince Dave to build a raised garden bed in the back yard. Either way - it is March and time to get the yard going.
Weight 159.5
Take care and keep the thoughts, prayers and comments coming - even though he isn't typing he is reading them. Thanks again for all the support - God Bless.
His neck is still doing well - just starting to get red, but no blisters or open sores. He has been very good about putting the cream on his neck. I just wish he was a diligent at taking his meds.
Saturday Dave remained in a somewhat gloomy mood, puttered around the garage for a little while, and then sat down and watch the NASCAR race. Took a dip in the Hot Tub before bed - hoping to relieve his spirits.Here it is Sunday, and although he is up and about he is not in the mood to do much of anything - least of all update the Blog. He did however spend some time reading through his email - the comments on the blog, and visited the Tonsil Cancer Support Group pages. I'll get him outside and moving today. We picked up 4 trees on Friday - a birch, two dwarf peach, and a willow tree to plant in the back yard. We need to get it done before we get the sprinkler system in. Then I am on the search for 6 or so half whiskey barrels to start the garden up again, or I'll have to convince Dave to build a raised garden bed in the back yard. Either way - it is March and time to get the yard going.
Weight 159.5
Take care and keep the thoughts, prayers and comments coming - even though he isn't typing he is reading them. Thanks again for all the support - God Bless.
Thursday, March 15, 2007
Thursday - #19
We are over the hump. Yesterday was the 4th weekly session of chemo (Kytril- anti-nausea and Carboplatin) and radiation session (fractal) #18. Things went smoothly, and the nurse there is really good. Dave is surprised at how little pain he has when she has to stick him for the IV. He grimaces every time she has to find a vein to put the needle in. This time it was his right forearm.
After finishing up with the medical stuff, we headed home and are in the process of getting bids to have a sprinkler system put in around the house. So as Dave was finishing up with the owner of the company I think we are going with, I started dinner - Bubba Burgers with cheese. Now of course David and I are in the dog house for having hamburgers for dinner, but I made an extra one and Dave actually sat down and ended up eating the whole burger with mustard (no bun) and had a small helping of beans. The taste wasn't great, but acceptable. After dinner, Dave had a touch of nausea, so we made sure that he took the anti-nausea pill before bed along with his Salagen.
After a night of tossing and turning, Dave woke up a little nauseated, took his pills again and then got up and headed to the Dodge dealer - 30,000 mile maintenance. He wound up sitting at the dealers for about three hours and had to make a direct trip to the Cancer Treatment Center for his radiation treatment. I ended up meeting him there with his meds and some jello. After his session, we went in and saw Dr. Amin (Dave's other radiation oncologist). He looked in Dave's mouth and noticed that he is getting a slight yeast infection, so he prescribed Nystatin (1tsp four times a day) and then Carafate to help his throat out as well (2tsp three times a day). Both are in liquid form, and must go down his throat. One highlight from talking with Dr. Amin, we might be reduced to 33 sessions vs. 35, but I'm not going to count on it yet.
This afternoon, Dave took it pretty easy while I finished the grout on the fireplace, and as the afternoon wore on he started complaining about more nausea, eventually getting to the point that he thought he was going to vomit. Luckily didn't vomit, but his thick saliva is tickling the back of his throat to the point that he is coughing hard to get it up.
Well things have settled down and it is time to turn in. Still taking it one day at a time - hopefully tomorrow will be better as we finish off week 4. Take care and thanks for the prayers and support.
After finishing up with the medical stuff, we headed home and are in the process of getting bids to have a sprinkler system put in around the house. So as Dave was finishing up with the owner of the company I think we are going with, I started dinner - Bubba Burgers with cheese. Now of course David and I are in the dog house for having hamburgers for dinner, but I made an extra one and Dave actually sat down and ended up eating the whole burger with mustard (no bun) and had a small helping of beans. The taste wasn't great, but acceptable. After dinner, Dave had a touch of nausea, so we made sure that he took the anti-nausea pill before bed along with his Salagen.
After a night of tossing and turning, Dave woke up a little nauseated, took his pills again and then got up and headed to the Dodge dealer - 30,000 mile maintenance. He wound up sitting at the dealers for about three hours and had to make a direct trip to the Cancer Treatment Center for his radiation treatment. I ended up meeting him there with his meds and some jello. After his session, we went in and saw Dr. Amin (Dave's other radiation oncologist). He looked in Dave's mouth and noticed that he is getting a slight yeast infection, so he prescribed Nystatin (1tsp four times a day) and then Carafate to help his throat out as well (2tsp three times a day). Both are in liquid form, and must go down his throat. One highlight from talking with Dr. Amin, we might be reduced to 33 sessions vs. 35, but I'm not going to count on it yet.
This afternoon, Dave took it pretty easy while I finished the grout on the fireplace, and as the afternoon wore on he started complaining about more nausea, eventually getting to the point that he thought he was going to vomit. Luckily didn't vomit, but his thick saliva is tickling the back of his throat to the point that he is coughing hard to get it up.
Well things have settled down and it is time to turn in. Still taking it one day at a time - hopefully tomorrow will be better as we finish off week 4. Take care and thanks for the prayers and support.
Wednesday, March 14, 2007
Morning of the 1/2 way point
Well, here it is Wednesday morning and I thought Dave would up date this. Today marks the 1/2 way point in the radiation treatments. Taking things one day at a time, but I am very glad we are here.
Monday we went to see Dr. Debo (ENT) and he took a good look at Dave's tonsils and throat. All looks good. We talked about his nutrition and weight - he is down 9 lbs since the last visit three weeks ago. Dave's chief complaint is still that food tastes bad, so Dr. Debo reemphasized that the feeding tube would probably be his main means of nourishment, but that he still needs to try to eat - essentially "recreational eating" to keep his mouth (teeth, gums, jaw, tongue, etc) and throat healthy. Dr. Debo also put in a referral for us to see a nutritionalist. After the appointment w/ Dr. Debo, we then went on to the radiation clinic for his daily dose (#16), and I stopped in and talked with Miss Ellie (the Patient Navigator - she works for the American Cancer Society and Chesapeake Hospital) about how to get Dave to understand about his daily nourishment. We have to wait for Tricare to approve the referral for the nutritionalist. She left a message with the local American Cancer Society dietitian to give us a call.
Tuesday - treatment #17, went smoothly - still the chief complaint is sore throat and the taste of food. Had ENSURE plus for every meal and ate two scrambled eggs at lunch. Dave really has no desire to eat anything, primarily because everything taste bad. He even had a hard time getting the Juven down last night.
We talked with a dietitian yesterday, and she gave us some good tips. The main thing is that Dave has essentially given his nourishment over to the feeding tube and Ensure, we are up to 3 bottles of Ensure Plus a day and will probably increase that to 4 here shortly. The key is to keep his weight steady. If he continues to lose weight, increase the number of bottles (one bottle is 8 oz). She gave us some alternatives to mitigate the cost of the Ensure - Walmart's generic "Equate" is comprable, I just have to make sure that I get the "Plus" form (350 cal), and our local VA hospital has a cantena and she think we can get the Ensure there for less as well. Other notes:
- nothing thicker than the Ensure down the feeding tube
- don't force the 8 oz of ensure in at once - slow down and take it in over 10 or so minutes
- keep up on the fluids - 6-8 cups a day (we are doing pretty good on this one)
- try lemon/lime or lemonade in water to make it taste better
- Dave is having a hard time swallowing the multi-vitamin - switch to children's chewable (2 a day)
- if constipation becomes a problem (since he is essentially on a liquid diet) talk to our nurse about daily fiber or other options.
The bottom line is to keep experimenting to find something that tastes decent for Dave to eat, stick with the Ensure to maintain Dave's weight, and keep the fluid level up as well.
Hopefully Dave will update this later today - take care and thanks again - Marjie
Monday we went to see Dr. Debo (ENT) and he took a good look at Dave's tonsils and throat. All looks good. We talked about his nutrition and weight - he is down 9 lbs since the last visit three weeks ago. Dave's chief complaint is still that food tastes bad, so Dr. Debo reemphasized that the feeding tube would probably be his main means of nourishment, but that he still needs to try to eat - essentially "recreational eating" to keep his mouth (teeth, gums, jaw, tongue, etc) and throat healthy. Dr. Debo also put in a referral for us to see a nutritionalist. After the appointment w/ Dr. Debo, we then went on to the radiation clinic for his daily dose (#16), and I stopped in and talked with Miss Ellie (the Patient Navigator - she works for the American Cancer Society and Chesapeake Hospital) about how to get Dave to understand about his daily nourishment. We have to wait for Tricare to approve the referral for the nutritionalist. She left a message with the local American Cancer Society dietitian to give us a call.
Tuesday - treatment #17, went smoothly - still the chief complaint is sore throat and the taste of food. Had ENSURE plus for every meal and ate two scrambled eggs at lunch. Dave really has no desire to eat anything, primarily because everything taste bad. He even had a hard time getting the Juven down last night.
We talked with a dietitian yesterday, and she gave us some good tips. The main thing is that Dave has essentially given his nourishment over to the feeding tube and Ensure, we are up to 3 bottles of Ensure Plus a day and will probably increase that to 4 here shortly. The key is to keep his weight steady. If he continues to lose weight, increase the number of bottles (one bottle is 8 oz). She gave us some alternatives to mitigate the cost of the Ensure - Walmart's generic "Equate" is comprable, I just have to make sure that I get the "Plus" form (350 cal), and our local VA hospital has a cantena and she think we can get the Ensure there for less as well. Other notes:
- nothing thicker than the Ensure down the feeding tube
- don't force the 8 oz of ensure in at once - slow down and take it in over 10 or so minutes
- keep up on the fluids - 6-8 cups a day (we are doing pretty good on this one)
- try lemon/lime or lemonade in water to make it taste better
- Dave is having a hard time swallowing the multi-vitamin - switch to children's chewable (2 a day)
- if constipation becomes a problem (since he is essentially on a liquid diet) talk to our nurse about daily fiber or other options.
The bottom line is to keep experimenting to find something that tastes decent for Dave to eat, stick with the Ensure to maintain Dave's weight, and keep the fluid level up as well.
Hopefully Dave will update this later today - take care and thanks again - Marjie
Sunday, March 11, 2007
Done with Week 3 - On to Week 4
Well, here it is Sunday, and I noticed that Dave hasn't updated this in a couple of days. He is finally through the third week - 15 fractals down, 20 left. I think he is doing fairly well, actually better than we expected. Here are a couple of pictures:
As you can tell, his hair is starting to grow back. It is baby fine - peach fuzz, both on the top of his head and his chin.
Hi neck is looking good as well. He has been very good at putting the X-Clair cream on three times a day. We've got the Juven drinks down to a routine now - Orange in the AM, Grape in the PM. The hardest part of his meds is remembering to take the Salagen 4 times a day...we've been good at three times, but if I don't remind him, he doesn't take them.
The remaining hurdle is getting him to eat enough. Although on the outside he looks really good, he is hurting on the inside. The combination of the sore throat (which actually subsided a little on Friday and Saturday) and the loss of his sense of taste, makes eating difficult. So we are on the constant battle of consuming enough. My goal is for him to get at least 1500 calories a day - preferably more. Dave and I have come to the agreement that if he doesn't get at least 500 calories at a meal, then he need to drink an Ensure, or other meal- replacement drink. He is not exactly thrilled with the taste of Ensure, and thus the battle ensues. I have been on the pursuit of a nutritious, good tasting milkshake (one that I can pack the calories in that he will not turn his nose up at, since he has been reluctant to use the feeding tube for anything other than water. Yesterday we hit a milestone. After Dave was not able to eat much of a very good steak dinner last night, our good friend from WA, Tami Branch helped me convince Dave to try the feeding tube with the Ensure. Tami was in town going to school for the week and came over and spent the day with us. It was really nice to catching up on all the news in Port Orchard and having Dave hear another perspective on nutrition - other than mine. So he downed a bottle of room temperature Ensure Plus (350 cals) using the tube with really no difficulty. Hooray!
Well tomorrow starts week 4 with fractal 16 - Wednesday we will be at the half-way point. Although I am just here on the sidelines, helping Dave get through this, I will be glad when we are done, and I have my hard charging husband back. It is hard watching someone you love be in pain, and not be able to fix it - He is doing really well at staying positive and busy - reloading, spending time at the gun range with David, helping me paint the inside of the house, and our latest project - replacing the tile around the fireplace. He also just got a new digital camera (CANON Rebel XT), and ordered me a GPS for my car...some good gadgets to keep him occupied while I am at work. Speaking of work - my Humanitarian transfer did go through and I am now on shore duty, and the command is giving me all the time off I need to take care of Dave. It is what I need, but I will say that going from a very high stress - fast pace job focused on schedules and operations, to the calm and almost 100% focus at home is an adjustment for me. Lucky for me, my command knows where my focus has to be (Dave), and although I feel somewhat guilty not contributing to the command, my focus is at home for the next couple of months until he is through this, then I can go back to the working world, and then to back to sea duty again.
So I think I have written enough...Dave is doing well, and the support that all of you have been given us is nothing short of outstanding. Thank you for all the comments, emails, cards, wishes, and prayers. We are taking this one day at a time...and soon enough this will be all over and we will be back out there enjoying life.
Just notes ~
Side effects: sore throat, thick spit, everything taste horrible, mouth hurts
Meds: Salagen (dry mouth), X-Clair (skin), Prilosec (tummy), Prochlorperazine (anti-nausea), Multi-vitamin, Clack's VOA (for sore throat and mouth - not that I can get him to use it).
Chemo: Carboplatin
Products: Juven (Therapeutic Nutritional Drink), Biotene Mouthwash(non-alcohol mouthwash - really good), Home made mouth rinse (1qt water+1t baking soda + 1t salt), Ensure.
Weight: 163.
Take care and thanks again for all the love and support - Marjie
As you can tell, his hair is starting to grow back. It is baby fine - peach fuzz, both on the top of his head and his chin.
Hi neck is looking good as well. He has been very good at putting the X-Clair cream on three times a day. We've got the Juven drinks down to a routine now - Orange in the AM, Grape in the PM. The hardest part of his meds is remembering to take the Salagen 4 times a day...we've been good at three times, but if I don't remind him, he doesn't take them.
The remaining hurdle is getting him to eat enough. Although on the outside he looks really good, he is hurting on the inside. The combination of the sore throat (which actually subsided a little on Friday and Saturday) and the loss of his sense of taste, makes eating difficult. So we are on the constant battle of consuming enough. My goal is for him to get at least 1500 calories a day - preferably more. Dave and I have come to the agreement that if he doesn't get at least 500 calories at a meal, then he need to drink an Ensure, or other meal- replacement drink. He is not exactly thrilled with the taste of Ensure, and thus the battle ensues. I have been on the pursuit of a nutritious, good tasting milkshake (one that I can pack the calories in that he will not turn his nose up at, since he has been reluctant to use the feeding tube for anything other than water. Yesterday we hit a milestone. After Dave was not able to eat much of a very good steak dinner last night, our good friend from WA, Tami Branch helped me convince Dave to try the feeding tube with the Ensure. Tami was in town going to school for the week and came over and spent the day with us. It was really nice to catching up on all the news in Port Orchard and having Dave hear another perspective on nutrition - other than mine. So he downed a bottle of room temperature Ensure Plus (350 cals) using the tube with really no difficulty. Hooray!
Well tomorrow starts week 4 with fractal 16 - Wednesday we will be at the half-way point. Although I am just here on the sidelines, helping Dave get through this, I will be glad when we are done, and I have my hard charging husband back. It is hard watching someone you love be in pain, and not be able to fix it - He is doing really well at staying positive and busy - reloading, spending time at the gun range with David, helping me paint the inside of the house, and our latest project - replacing the tile around the fireplace. He also just got a new digital camera (CANON Rebel XT), and ordered me a GPS for my car...some good gadgets to keep him occupied while I am at work. Speaking of work - my Humanitarian transfer did go through and I am now on shore duty, and the command is giving me all the time off I need to take care of Dave. It is what I need, but I will say that going from a very high stress - fast pace job focused on schedules and operations, to the calm and almost 100% focus at home is an adjustment for me. Lucky for me, my command knows where my focus has to be (Dave), and although I feel somewhat guilty not contributing to the command, my focus is at home for the next couple of months until he is through this, then I can go back to the working world, and then to back to sea duty again.
So I think I have written enough...Dave is doing well, and the support that all of you have been given us is nothing short of outstanding. Thank you for all the comments, emails, cards, wishes, and prayers. We are taking this one day at a time...and soon enough this will be all over and we will be back out there enjoying life.
Just notes ~
Side effects: sore throat, thick spit, everything taste horrible, mouth hurts
Meds: Salagen (dry mouth), X-Clair (skin), Prilosec (tummy), Prochlorperazine (anti-nausea), Multi-vitamin, Clack's VOA (for sore throat and mouth - not that I can get him to use it).
Chemo: Carboplatin
Products: Juven (Therapeutic Nutritional Drink), Biotene Mouthwash(non-alcohol mouthwash - really good), Home made mouth rinse (1qt water+1t baking soda + 1t salt), Ensure.
Weight: 163.
Take care and thanks again for all the love and support - Marjie
Thursday, March 8, 2007
Feeling a little bit better! :)
Today was the 14th radiation treatment along with the 3rd dose of chemo. Believe it or not, I'm actually feeling a little better than I've felt for the last week. My throat is mainly what I'm talking about. It still hurts a little, but nothing like it's been feeling. Taste buds are still severely out of whack and my weight is down to my normal range or at least what I feel I should be weighing.
Haven't been eating too much for the last week and Marjie must feel like a short order cook these days. We've been trying all kinds of different foods. Most of which I take a bite or two and then have to send back to the kitchen. The only thing I've been able to get down lately is soup, Jello, mashed potatoes, yogurt and scrambled eggs.
Tonight is Marjie's 40th birthday. Happy Birthday Babe!!!!! David cooked steaks, baked potatoes and zucchini. I was actually able to eat the whole potato, a bunch of zucchini and a few bites of steak! Yahoo :)
I received an email and an invitation to join a Google Group today. The invitation was from a lady named Lee, the wife of Raph. Raph was a cancer patient in the UK going through tonsil cancer. He's the one that inspired me to start this blog.
Anyway, the Google group she started is for Tonsil Cancer Survivors, Caregivers and Patients. I think she's invited about 45 people to join so far. It started this morning and I was the first person to post something on it. Checked it again tonight and there are several folks that have logged on and starting to post. I think this is going to be pretty cool. I'll post more about it later after I have a better chance to check it out.
Thanks again to everyone that's been in contact with me lately. Jennifer Martinez and Bill Weier...please shoot me an email. I'd like to keep in touch with you both.
For any of you in the Navy who haven't heard about this website, you really need to check it out. I signed up about a month ago and since then have been in contact with over 30 shipmates from almost every duty station I've been assigned and lost contact with.
Navy Togetherweserved
That's all for now.......keeping the faith in Chesapeake!!!!!
Out!
Haven't been eating too much for the last week and Marjie must feel like a short order cook these days. We've been trying all kinds of different foods. Most of which I take a bite or two and then have to send back to the kitchen. The only thing I've been able to get down lately is soup, Jello, mashed potatoes, yogurt and scrambled eggs.
Tonight is Marjie's 40th birthday. Happy Birthday Babe!!!!! David cooked steaks, baked potatoes and zucchini. I was actually able to eat the whole potato, a bunch of zucchini and a few bites of steak! Yahoo :)
I received an email and an invitation to join a Google Group today. The invitation was from a lady named Lee, the wife of Raph. Raph was a cancer patient in the UK going through tonsil cancer. He's the one that inspired me to start this blog.
Anyway, the Google group she started is for Tonsil Cancer Survivors, Caregivers and Patients. I think she's invited about 45 people to join so far. It started this morning and I was the first person to post something on it. Checked it again tonight and there are several folks that have logged on and starting to post. I think this is going to be pretty cool. I'll post more about it later after I have a better chance to check it out.
Thanks again to everyone that's been in contact with me lately. Jennifer Martinez and Bill Weier...please shoot me an email. I'd like to keep in touch with you both.
For any of you in the Navy who haven't heard about this website, you really need to check it out. I signed up about a month ago and since then have been in contact with over 30 shipmates from almost every duty station I've been assigned and lost contact with.
Navy Togetherweserved
That's all for now.......keeping the faith in Chesapeake!!!!!
Out!
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