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Nothing exciting has happened (like projectile vomiting in the kitchen) since the last update. I had an appointment with Dr Nemecek on Monday of this week. When I told him that I had refilled the prescription for Diflucan because the Thrush was back he became a little concerned. He wrote out a prescription for a steroid and an anti-biotic. That was the bad news. The good news is that he thought the ulcer in the back of my mouth was starting to heal. It doesn't feel that way to me. When I yawn it feels like the tissue in my mouth is ripping apart.
The consequence of the Thrush coming back is that the back of my mouth and also my throat feel swollen. I'm not inclined to eat anything challenging. So its back to the soups. Just in case the Biotene mouthwash had something to do with the Thrush coming back I have stopped using it. The mouthwash was helpful in preventing my mouth from drying out for about an hour so I miss it.
The Neuropathy in my feet hasn't improved but it hasn't become any worse. However, I now feel it in my pinky fingers. Dr Nemecek said it was along my ulnar nerve. On a positive note he did think that the Neuropathy would go away. I talked with another throat cancer survivor that had Neuropathy and he said it went away after a couple of months. So I have hope that mine will too.
Work is going well. The tasks are interesting and the clients are easy to work with. I'm close to billing 40 hours a week. It looks like I'll be there through the middle of January.
Thanks for checking in. I really appreciate all the prayers, emails and phone calls!
Wednesday, December 9, 2009
Sunday, November 22, 2009
Recovery Day 69 - Tingling Feet
At my visit with my radiation doctor this past week I brought up an issue that I thought was unrelated to the cancer treatment. My feet were tingling, kind of like they were falling asleep. I feel it more when I have shoes on but it is still present with just socks on. Unfortunately, I was told that this is likely a side affect of the chemotherapy and the medical term is neuropathy. It may or may not go away and it could also affect my fingers. I'm taking a B vitamin complex as well as vitamin E as directed by my doctor.
I worked my first full day on Friday. That worked out well because the client's department was having a Thanksgiving potluck lunch. There was a good selection of food I could actually eat. I still don't have much in the way of taste bud activity and my mouth continues to be rather dry.
Cathy told me that I'm now snoring. I didn't do that before cancer. I sure hope it goes away. When I go camping I declare the area around my tent a "Snore Free Zone". I really hope that I haven't become one of them. :)
I'm slowing ramping up my physical activity level. I helped assemble Thanksgiving baskets at church on Saturday and today I mounted the winter wheels/tires on Cathy's van. I think the tires gained weight while in storage. I don't remember them being that heavy.
I worked my first full day on Friday. That worked out well because the client's department was having a Thanksgiving potluck lunch. There was a good selection of food I could actually eat. I still don't have much in the way of taste bud activity and my mouth continues to be rather dry.
Cathy told me that I'm now snoring. I didn't do that before cancer. I sure hope it goes away. When I go camping I declare the area around my tent a "Snore Free Zone". I really hope that I haven't become one of them. :)
I'm slowing ramping up my physical activity level. I helped assemble Thanksgiving baskets at church on Saturday and today I mounted the winter wheels/tires on Cathy's van. I think the tires gained weight while in storage. I don't remember them being that heavy.
Saturday, November 14, 2009
Recovery Day 61 - Life Without The Tube
Most of my abdominal pains have gone away now that the tube is gone. I can now sleep on my left side as well as my stomach. I still find myself trying to move the tube out of the way when I tuck in my shirt. I'll be glad to get rid of that habit. I would like to start doing sit ups but I'll wait another 5 days like the surgeon recommended.
Since the tube came out I haven't been tracking my calorie intake. I suspect that my intake is a bit lower now but so far not down enough to cause a drop in my weight. Eating is still a time consuming chore and my taste buds haven't come back much. I have recently added canned grapefruit to my diet. The taste is muted but I can tell it is a bit sour/tart.
Before I went back to work I was concerned that I had lost some of my skills as well as my ability to concentrate on complicated problems. I am happy to say my fears were unfounded. I can still write complicated code that nobody else understands. I am consulting at a local school district helping them to come up with a data warehouse for their student data. The past two weeks I have been focusing on grades. We have come up with grade data (GPA, cumulative GPA, class rank, etc) that doesn't currently exist in their current system in a format that they can report off of. The data warehouse is going to be impressive.
Since the tube came out I haven't been tracking my calorie intake. I suspect that my intake is a bit lower now but so far not down enough to cause a drop in my weight. Eating is still a time consuming chore and my taste buds haven't come back much. I have recently added canned grapefruit to my diet. The taste is muted but I can tell it is a bit sour/tart.
Before I went back to work I was concerned that I had lost some of my skills as well as my ability to concentrate on complicated problems. I am happy to say my fears were unfounded. I can still write complicated code that nobody else understands. I am consulting at a local school district helping them to come up with a data warehouse for their student data. The past two weeks I have been focusing on grades. We have come up with grade data (GPA, cumulative GPA, class rank, etc) that doesn't currently exist in their current system in a format that they can report off of. The data warehouse is going to be impressive.
Tuesday, November 10, 2009
Recovery Day 57 - No More Tube!
I had my stomach tube removed today! It was a very quick and painless procedure. Before they removed it they took a look with the ultrasound machine and apparently the end of the tube had slipped out of my stomach and into the lower bowel (I think that's what he said). That could explain some of the abdominal pain I've had. Anyhow, I had a big grin on my face as I walked out of the hospital.
I have a thick piece of gauze over the hole where the tube was. It will take a couple days for my stomach to close it off and there could be leakage. I was told to not drink large quantities of water in a short period of time. Perhaps if I drank a lot of water and did some sit ups I could make a fountain.
Over the past few days I have averaged 2,600 calories by mouth. Today I was off that mark because my stomach seems to be adjusting to the absence of the tube and was feeling a bit off.
I have been back to work for a week now and it's going well.
I have a thick piece of gauze over the hole where the tube was. It will take a couple days for my stomach to close it off and there could be leakage. I was told to not drink large quantities of water in a short period of time. Perhaps if I drank a lot of water and did some sit ups I could make a fountain.
Over the past few days I have averaged 2,600 calories by mouth. Today I was off that mark because my stomach seems to be adjusting to the absence of the tube and was feeling a bit off.
I have been back to work for a week now and it's going well.
Tuesday, November 3, 2009
Recovery Day 50 - Good Progress
In general, I'm feeling pretty good. I'm eating at least 2,200 calories per day and pumping only two cans of formula at night. I only have six cans of formula left to use so the tube will be coming out soon. Meals are taking a bit less time and less water to get down and I'm eating a wider variety of food. I continue to walk about 3 miles at the mall on most days. I started back to work last Friday - mornings only for now. I'm pretty pooped and hungry by the time I get home. I drink a bottle of Ensure about half way through the morning.
I'm currently on Diflucan for Thrush. The Nystatin wasn't cutting it. The Diflucan seems to be doing the job.
I have some abdominal pains that I really hope are due to the stomach tube. My mouth is still dry four days after stopping use of the Nystatin. Hopefully that affect will wear off soon.
We had 20" of snow dropped on us last week. The kids had three snow days. Cathy said I was not allowed to shovel snow or use my snow blower. So I did both - but kept my activity to a minimum. The boys ran the snow blower on the driveway while I supervised. I probably would have done more work with the snow blower but it ran out of gasoline. It was good to get outside.
I'm currently on Diflucan for Thrush. The Nystatin wasn't cutting it. The Diflucan seems to be doing the job.
I have some abdominal pains that I really hope are due to the stomach tube. My mouth is still dry four days after stopping use of the Nystatin. Hopefully that affect will wear off soon.
We had 20" of snow dropped on us last week. The kids had three snow days. Cathy said I was not allowed to shovel snow or use my snow blower. So I did both - but kept my activity to a minimum. The boys ran the snow blower on the driveway while I supervised. I probably would have done more work with the snow blower but it ran out of gasoline. It was good to get outside.
Monday, October 26, 2009
Recovery Day 43 - Hearing Loss
During my visit today with Dr Klancar I mentioned that my hearing was off. I can't hear as well out of my left ear as I can with my right. She said that the hearing loss was likely due to the chemotherapy and that it could be permanent. I really hope not because the difference in hearing levels gives me a bit of a headache. I also have problems with loud sound. It's somewhat disorienting.
On Saturday I was eating some Ramen soup when a piece of noodle decided to take a side trip into my right sinus cavity (it's what your sinuses use to drain into your mouth/throat). I tried everything I could to get it unstuck but so far nothing has worked. Hopefully it will disintegrate and get flushed out of there.
Tomorrow night I'm going to change my nightly formula intake to only three cans. Hopefully a few days later I'll be down to two cans and then maybe none. I can't see much use in pumping only one can of formula at night. In order to reduce my formula intake I'm going to have to increase my daily food intake (by mouth). I'm stuck at about 2,000 calories my mouth and I'll need to add as much as 1,000 calories. I'm not sure how I'm going to do that. Getting 2,000 calories in now is taking a lot of my time during the day already. But I really want to get rid of the stomach tube so I'll figure something out.
I had my teeth cleaned today. There was some buildup on my teeth that I couldn't get rid of with just toothpaste and a brush. They feel much better now.
On Saturday I was eating some Ramen soup when a piece of noodle decided to take a side trip into my right sinus cavity (it's what your sinuses use to drain into your mouth/throat). I tried everything I could to get it unstuck but so far nothing has worked. Hopefully it will disintegrate and get flushed out of there.
Tomorrow night I'm going to change my nightly formula intake to only three cans. Hopefully a few days later I'll be down to two cans and then maybe none. I can't see much use in pumping only one can of formula at night. In order to reduce my formula intake I'm going to have to increase my daily food intake (by mouth). I'm stuck at about 2,000 calories my mouth and I'll need to add as much as 1,000 calories. I'm not sure how I'm going to do that. Getting 2,000 calories in now is taking a lot of my time during the day already. But I really want to get rid of the stomach tube so I'll figure something out.
I had my teeth cleaned today. There was some buildup on my teeth that I couldn't get rid of with just toothpaste and a brush. They feel much better now.
Thursday, October 22, 2009
Recovery Day 39 - Dining Out!
After walking at the mall this morning with my mom I took her out for lunch at Sweet Tomatoes. This was my first time to eat out since about the middle of July. I tried a little bit of salad (I ate it but the dressing was very spicy), some pasta (not enough sauce, hard to eat), beets (which I normally avoid at all costs), a number of soups, macaroni and cheese and finally some soft serve yogurt/ice cream. It took a long time to eat all that. I ate about 3/4 of the mac and cheese before it got too cold to eat. The tomato soup was good. I hadn't tried tomato soup until today and it's good to know I can eat it without it irritating my mouth and throat. That opens up a lot of other possible foods to try.
My mom and I then went shopping for soups and other canned items with the maximum amount of calories. People listening to us must think we're crazy. The conversation would go like this: How about this soup? No, it ONLY has 90 calories per serving. Hey, this one has 210 calories per serving! Better get three then.
My neighbor Louis read my last post about using the Nystatin rinse. He works in a pharmacy so he called the company that makes Nystatin and found out that they recommend waiting 30 minutes before rinsing with water or brushing your teeth. A big thanks to Louis for tracking that down. One of my doctors said I didn't have to wait any time at all. Oops!
I try not to write really long posts but I want to end with some humor. I have a bottle of BMX that is in an identical bottle as my Nystatin. The BMX is a mix of Benadryl, Maalox and Lidocaine. It's designed to numb my mouth and throat should it be painful. Unfortunately I grabbed the wrong bottle when I was intending to rinse with Nystatin. I thoroughly swished it around in my mouth and even gargled with it. The first indication that something was wrong was when I spit it out. I wondered why it was pink instead of yellow. About that time my lips started to go numb. I quickly realized what I had done and tried to rinse my mouth out with water but it was too late. My ENTIRE mouth was numb. My tongue felt like it was two inches thick, the roof of my mouth was numb, my gums were numb, my lips were numb. My mouth was so numb that I was drooling and could hardly speak. I could have had teeth pulled and not felt it. I couldn't swallow pills. After only 40 minutes things returned to normal and I could then take Nystatin from the correct bottle. Needless to say I have clearly marked the bottle of BMX so this doesn't happen again.
My mom and I then went shopping for soups and other canned items with the maximum amount of calories. People listening to us must think we're crazy. The conversation would go like this: How about this soup? No, it ONLY has 90 calories per serving. Hey, this one has 210 calories per serving! Better get three then.
My neighbor Louis read my last post about using the Nystatin rinse. He works in a pharmacy so he called the company that makes Nystatin and found out that they recommend waiting 30 minutes before rinsing with water or brushing your teeth. A big thanks to Louis for tracking that down. One of my doctors said I didn't have to wait any time at all. Oops!
I try not to write really long posts but I want to end with some humor. I have a bottle of BMX that is in an identical bottle as my Nystatin. The BMX is a mix of Benadryl, Maalox and Lidocaine. It's designed to numb my mouth and throat should it be painful. Unfortunately I grabbed the wrong bottle when I was intending to rinse with Nystatin. I thoroughly swished it around in my mouth and even gargled with it. The first indication that something was wrong was when I spit it out. I wondered why it was pink instead of yellow. About that time my lips started to go numb. I quickly realized what I had done and tried to rinse my mouth out with water but it was too late. My ENTIRE mouth was numb. My tongue felt like it was two inches thick, the roof of my mouth was numb, my gums were numb, my lips were numb. My mouth was so numb that I was drooling and could hardly speak. I could have had teeth pulled and not felt it. I couldn't swallow pills. After only 40 minutes things returned to normal and I could then take Nystatin from the correct bottle. Needless to say I have clearly marked the bottle of BMX so this doesn't happen again.
Sunday, October 18, 2009
Recovery Day 35 - Food!
Yesterday was my first day to eat more than 2,000 calories by mouth. I won't be able to hit that every day but it's nice to know I can hit that mark.
I had a bad experience with broccoli this week. At dinner on Wednesday I ate too large a piece and gagged on it. About 30 seconds later my stomach decided to come up. In part, I guess I'm still relearning how to swallow. But my portion size selection needs a little work too.
I saw Dr Nemecek on Friday. He said that my salivary glands are unlikely to come back to the same level that they were before cancer treatments and that it would likely take 15 months for them to come back as much as they were going to. I really didn't want to hear that. He also spotted Thrush in my mouth so I started a dose of Nystatin. It's a liquid that I have to rinse my mouth with and then spit it out. I do that twice a day. However, I don't know how long after spitting it out that I'm supposed to wait before I can rinse my mouth with water or brush my teeth.
Dr Nemecek also said that my stomach tube couldn't come out without his permission. While I would love to get rid of the tube I recognize that I'm still not getting quite enough calories by mouth. He also explained why I wasn't putting on any weight. (I have been frustrated because I'm stuck at 150.) Apparently my body is going through a lot of healing and the healing is sucking up a lot of the calories that I'm taking in.
Brushing my teeth has become easier. But flossing my teeth is still like playing hide-and-seek with my gag reflex. Flossing my back teeth is challenging because of that. I have to be really quick on the back teeth.
I had a bad experience with broccoli this week. At dinner on Wednesday I ate too large a piece and gagged on it. About 30 seconds later my stomach decided to come up. In part, I guess I'm still relearning how to swallow. But my portion size selection needs a little work too.
I saw Dr Nemecek on Friday. He said that my salivary glands are unlikely to come back to the same level that they were before cancer treatments and that it would likely take 15 months for them to come back as much as they were going to. I really didn't want to hear that. He also spotted Thrush in my mouth so I started a dose of Nystatin. It's a liquid that I have to rinse my mouth with and then spit it out. I do that twice a day. However, I don't know how long after spitting it out that I'm supposed to wait before I can rinse my mouth with water or brush my teeth.
Dr Nemecek also said that my stomach tube couldn't come out without his permission. While I would love to get rid of the tube I recognize that I'm still not getting quite enough calories by mouth. He also explained why I wasn't putting on any weight. (I have been frustrated because I'm stuck at 150.) Apparently my body is going through a lot of healing and the healing is sucking up a lot of the calories that I'm taking in.
Brushing my teeth has become easier. But flossing my teeth is still like playing hide-and-seek with my gag reflex. Flossing my back teeth is challenging because of that. I have to be really quick on the back teeth.
Tuesday, October 13, 2009
Recovery Day 30 - Adding To My Diet
On Monday I managed to again go all day without pumping formula. Timing when I eat and having the time to eat are problematic. I didn't have time to eat before I walked at the mall so I was very "hungry". About the only thing at the mall that I could eat was a Dairy Queen malt. I had a medium and according to their nutrition guide that was about 800 calories!
Hungry is in quotes above because I generally have no desire for food but I can tell that my stomach is empty and needs something. When I open the refrigerator I look at all the food and nothing jumps out at me as something I have any inclination to eat. Consequently it is challenging to come up with something to eat. My fallback is to ask Cathy what I should eat. Pretty lame, eh?
The big change to my diet was at dinner last night. Cathy had made some French Toast concoction in the blender a couple days ago. I tried eating it last night and gave up in frustration after eating half of it. Even with syrup it was hard to eat. I was pretty disgusted with myself. The rest of the family had beef brisket (from my good neighbor Ken) for dinner and there was one piece left on the table so I figured what the heck I’ll try it. I pounded it down, and then had two more pieces. It was incredible to eat meat again! It took me 30 minutes to eat those three pieces but I was overjoyed at being able to eat it.
I was at Dr Klancar's office yesterday and she said I was pretty much on track. But I want to be on the FAST track!
I did get my sprinkler fixed and blown out yesterday between a doctor visit and walking at the mall. There were a number of folks that offered to help and I should have taken them up on it. I hadn't realized how much my strength decreased over the past few months of treatment and recovery. I was pretty pooped when it was done.
Hungry is in quotes above because I generally have no desire for food but I can tell that my stomach is empty and needs something. When I open the refrigerator I look at all the food and nothing jumps out at me as something I have any inclination to eat. Consequently it is challenging to come up with something to eat. My fallback is to ask Cathy what I should eat. Pretty lame, eh?
The big change to my diet was at dinner last night. Cathy had made some French Toast concoction in the blender a couple days ago. I tried eating it last night and gave up in frustration after eating half of it. Even with syrup it was hard to eat. I was pretty disgusted with myself. The rest of the family had beef brisket (from my good neighbor Ken) for dinner and there was one piece left on the table so I figured what the heck I’ll try it. I pounded it down, and then had two more pieces. It was incredible to eat meat again! It took me 30 minutes to eat those three pieces but I was overjoyed at being able to eat it.
I was at Dr Klancar's office yesterday and she said I was pretty much on track. But I want to be on the FAST track!
I did get my sprinkler fixed and blown out yesterday between a doctor visit and walking at the mall. There were a number of folks that offered to help and I should have taken them up on it. I hadn't realized how much my strength decreased over the past few months of treatment and recovery. I was pretty pooped when it was done.
Sunday, October 11, 2009
Recovery Day 28 - No Formula All Day
I managed to eat enough food by mouth to keep me going all day. My total calorie intake was 1,485. That's pretty good but not enough to maintain my weight. So I'll be pumping 4 cans of formula tonight. This is the first day that I haven't pumped formula during the day!
I had Cathy's Souped Up Cream of Wheat, two glasses of 2% milk with Carnation Instant Breakfast drink, one bowl of Butternut Squash soup and half a bowl of Broccoli Cheese soup.
I hit the mall this afternoon with my mom and walked three laps. The mall is pretty crowded so we were dodging people the whole time.
Tonight I returned to ushering duty at church after a two month absence.
I had Cathy's Souped Up Cream of Wheat, two glasses of 2% milk with Carnation Instant Breakfast drink, one bowl of Butternut Squash soup and half a bowl of Broccoli Cheese soup.
I hit the mall this afternoon with my mom and walked three laps. The mall is pretty crowded so we were dodging people the whole time.
Tonight I returned to ushering duty at church after a two month absence.
Saturday, October 10, 2009
Recovery Day 27 - Mixed News
I was up early today to catch a 7:20 ride to the Knights of Columbus meeting from Chris K. It was great seeing the guys I've hung out with at church and KofC events. I'm planning to go to the KofC Spaghetti Dinner tonight to help out a little bit here and there. Chris K has come over to my house twice over the past two weeks just to talk with with. That has been great therapy for me.
I have been pumping at 105 ml/hr today. That is my new record rate. However, to put that in perspective, at that rate it takes 9.5 hours to consume 1,000 ml of formula (4 cans = 1,500 calories). That's a long time. I may have to try drinking the formula to get it down faster. It doesn't taste very good - even with the limited taste buds I have.
Karen M. gave me a lift to Colorado Pharmacy up on Colfax Friday. I picked up 4 more cases of formula. I really need to start eating more and pumping less as 4 cases of formula at 7 cans a day will only last about 14 days. I've been trying to maintain 7 cans a day AND eat food by mouth so I can put on weight. I need to eat more meals (I'm only doing breakfast and dinner so far) and add snacks too if I'm going to reduce the formula intake.
The bad news is that my stomach tube seems to be causing problems again. If I sit in a chair then my stomach starts to hurt. A standing or reclined position isn't a problem. Having a "full" stomach seems to reduce the problem. But I don't have a full stomach often. Maybe if I drink a lot more water and other fluids that would help. Not being able to sit is going to be a serious impediment to going back to work - even part time.
I'm getting better at bringing up the mucus from my throat. I have learned to do it on an empty stomach though. I tried it once right after a large bowl of Cathy's Super Cream of Wheat and came very close to vomiting it all up. With an empty stomach (during pumping formula counts at empty oddly enough) my stomach makes like it's going to come up but doesn't come anywhere close as when I have a full stomach.
In other news, it got down into the teens last night. Consequently, my sprinkler system is all frozen up. I can already tell that there is some damage that needs to be fixed. Ugh!
I have been pumping at 105 ml/hr today. That is my new record rate. However, to put that in perspective, at that rate it takes 9.5 hours to consume 1,000 ml of formula (4 cans = 1,500 calories). That's a long time. I may have to try drinking the formula to get it down faster. It doesn't taste very good - even with the limited taste buds I have.
Karen M. gave me a lift to Colorado Pharmacy up on Colfax Friday. I picked up 4 more cases of formula. I really need to start eating more and pumping less as 4 cases of formula at 7 cans a day will only last about 14 days. I've been trying to maintain 7 cans a day AND eat food by mouth so I can put on weight. I need to eat more meals (I'm only doing breakfast and dinner so far) and add snacks too if I'm going to reduce the formula intake.
The bad news is that my stomach tube seems to be causing problems again. If I sit in a chair then my stomach starts to hurt. A standing or reclined position isn't a problem. Having a "full" stomach seems to reduce the problem. But I don't have a full stomach often. Maybe if I drink a lot more water and other fluids that would help. Not being able to sit is going to be a serious impediment to going back to work - even part time.
I'm getting better at bringing up the mucus from my throat. I have learned to do it on an empty stomach though. I tried it once right after a large bowl of Cathy's Super Cream of Wheat and came very close to vomiting it all up. With an empty stomach (during pumping formula counts at empty oddly enough) my stomach makes like it's going to come up but doesn't come anywhere close as when I have a full stomach.
In other news, it got down into the teens last night. Consequently, my sprinkler system is all frozen up. I can already tell that there is some damage that needs to be fixed. Ugh!
Wednesday, October 7, 2009
Recovery Day 24 - Weight Gain!
Something to celebrate! My weight is back up to about 150 lbs! I was really disheartened when it dipped below 145. So my weight coming back up to a more reasonable 150 lbs is really good news. I have been pumping 7 cans of formula a day (3 daily, 4 at night) at 90 to 95 ml/h to work my weight back up. I have also started eating an actual breakfast and dinner.
Breakfast consists of a souped up large bowl of Cream of Wheat. Cathy makes this ahead of time and stores portion size containers in the fridge. She used evaporated milk, butter and brown sugar to rev up the content.
Dinner has been Salmon Quiche with gravy - another Cathy concoction. I can't taste much of it but it smells good so that will have to do. The quiche is fairly soft but I still need gravy to get it down. Eating it requires a lot more focus on swallowing than does the Cream of Wheat. It also requires a lot of time to eat due to the small bites I'm taking. Most everyone else at the table is finished and I'm still working on just my quiche.
The only formula I have been pumping is Iso-Source 1.5 (375 calories/can). I tried pumping two cans of Nutren 2.0 (500 calories) yesterday and I ended up with a stomach that was so sore that I stopped pumping and dumped out all the Nutren. Something in Nutren just doesn't agree with my stomach. Unfortunately, I have two cases of very expensive Nutren - that I won't use - and I just opened my last cast of Iso-Source. So I think I'm going to have to order more Iso-Source. I don't see me eating 2,000 calories by mouth yet. I would really like to get rid of the stomach tube but that's a couple weeks away I think.
I went to Sean's Boy Scout meeting last night. It had been quite a while since I had been to one. It was great to see the adult leaders as well as the scouts. I really missed interacting with many of the adult leaders.
Breakfast consists of a souped up large bowl of Cream of Wheat. Cathy makes this ahead of time and stores portion size containers in the fridge. She used evaporated milk, butter and brown sugar to rev up the content.
Dinner has been Salmon Quiche with gravy - another Cathy concoction. I can't taste much of it but it smells good so that will have to do. The quiche is fairly soft but I still need gravy to get it down. Eating it requires a lot more focus on swallowing than does the Cream of Wheat. It also requires a lot of time to eat due to the small bites I'm taking. Most everyone else at the table is finished and I'm still working on just my quiche.
The only formula I have been pumping is Iso-Source 1.5 (375 calories/can). I tried pumping two cans of Nutren 2.0 (500 calories) yesterday and I ended up with a stomach that was so sore that I stopped pumping and dumped out all the Nutren. Something in Nutren just doesn't agree with my stomach. Unfortunately, I have two cases of very expensive Nutren - that I won't use - and I just opened my last cast of Iso-Source. So I think I'm going to have to order more Iso-Source. I don't see me eating 2,000 calories by mouth yet. I would really like to get rid of the stomach tube but that's a couple weeks away I think.
I went to Sean's Boy Scout meeting last night. It had been quite a while since I had been to one. It was great to see the adult leaders as well as the scouts. I really missed interacting with many of the adult leaders.
Tuesday, October 6, 2009
Progressing each day
We saw the radiation oncologist yesterday. He was very pleased with Jim's progress and tried to give Jim some realistic expectations for his recovery. He said something to the effect that it took 8 weeks to beat him up, its going to take at least 8 weeks to recover. Jim's expectations at just 3 weeks after treatment are not realistic. (Jim's been looking for someone to tell him exactly when to expect certain milestones, but no one can do that since every person and every treatment is unique.)
Jim and I continue to be amazed by the amount of time that the doctors and nurses spend with us. It is as though there is nowhere else they need to be at the time they are with you. This explains why the appointments seldom start on time, so when I start to complain about the amount of time spent at the doctor's office, I need to remind myself of this.
The doctor did not feel that a "barium-swallow test" is necessary; he thinks that Jim merely needs practice swallowing. He encouraged Jim to eat tiny amounts all day long with the goal of getting rid of the feeding tube. Due to recent weight loss, for the past week Jim had really slowed down on trying food and focused more on getting as much nutrition as possible via the tube. I'm pleased to say that he is once again focused on trying to take nourishment by mouth. He's also not by nature an adventurous eater so I appreciate the fact that he has been so good about trying the various concoctions I have been experimenting with.
The doctor also encouraged Jim to avoid sitting around with nothing to do but think. He needs to start small and will take plenty of rests, but this should help him to feel more normal as he has never been much of a couch potato.
Jim and I continue to be amazed by the amount of time that the doctors and nurses spend with us. It is as though there is nowhere else they need to be at the time they are with you. This explains why the appointments seldom start on time, so when I start to complain about the amount of time spent at the doctor's office, I need to remind myself of this.
The doctor did not feel that a "barium-swallow test" is necessary; he thinks that Jim merely needs practice swallowing. He encouraged Jim to eat tiny amounts all day long with the goal of getting rid of the feeding tube. Due to recent weight loss, for the past week Jim had really slowed down on trying food and focused more on getting as much nutrition as possible via the tube. I'm pleased to say that he is once again focused on trying to take nourishment by mouth. He's also not by nature an adventurous eater so I appreciate the fact that he has been so good about trying the various concoctions I have been experimenting with.
The doctor also encouraged Jim to avoid sitting around with nothing to do but think. He needs to start small and will take plenty of rests, but this should help him to feel more normal as he has never been much of a couch potato.
Thursday, October 1, 2009
Recovery Day 18
Today was a pretty good day. I made it to the mall to walk and even cruised through Walmart without freaking out. I then went to the library to get a few books to read. My mom has been a very generous shuttle service. (I'm not 100% comfortable with driving yet)
I have been ratcheting up the rate used to pump formula into my stomach and I'm up to 85 ml/hr without any discomfort. I think the change to the lower calorie formula is really making a positive difference.
I managed to clear my throat mucus a few times without losing my stomach.
I do need to work on drinking more water. I'm probably drinking less than half of what they want me drinking. But I've never been much of a water drinker so getting into the habit is tough. I don't like drinking out of bottles. I prefer a cup.
I still can't take a nap to save my life.
I have been ratcheting up the rate used to pump formula into my stomach and I'm up to 85 ml/hr without any discomfort. I think the change to the lower calorie formula is really making a positive difference.
I managed to clear my throat mucus a few times without losing my stomach.
I do need to work on drinking more water. I'm probably drinking less than half of what they want me drinking. But I've never been much of a water drinker so getting into the habit is tough. I don't like drinking out of bottles. I prefer a cup.
I still can't take a nap to save my life.
Wednesday, September 30, 2009
Recovery Day 17
Every day is different. That seems to be true for this recovery period. No day has been just like the prior one. Today is no exception.
My night time sleep continues to improve. I think most of this is due to medications, but I'm not complaining. However, for most of today I have felt fatigued. I've tried to lay down and take a nap but sleep just doesn't happen. My Serotonin levels must still be depleted.
Because of the fatigue I had my mom drive to get my allergy injection. After that she drove me to watch Sean's final football game of the season. Due to treatment and recovery this was the ONLY game I got to watch. They won 38-8 or something like that and I got to see Sean play and get involved in a number of tackles. Woo Hoo!
Though I didn't scream/yell at the game, I did a lot of clapping.
I can tell that parts of my throat are healing. In the past, every time I yawned my throat was very painful. Now, the pain is minimal. It's a small step but I'll take it.
My night time sleep continues to improve. I think most of this is due to medications, but I'm not complaining. However, for most of today I have felt fatigued. I've tried to lay down and take a nap but sleep just doesn't happen. My Serotonin levels must still be depleted.
Because of the fatigue I had my mom drive to get my allergy injection. After that she drove me to watch Sean's final football game of the season. Due to treatment and recovery this was the ONLY game I got to watch. They won 38-8 or something like that and I got to see Sean play and get involved in a number of tackles. Woo Hoo!
Though I didn't scream/yell at the game, I did a lot of clapping.
I can tell that parts of my throat are healing. In the past, every time I yawned my throat was very painful. Now, the pain is minimal. It's a small step but I'll take it.
Blessings
Things continue to improve daily though Jim is having trouble seeing this through the fog of his unhappiness. Yesterday he walked at the mall with his Mom and didn't seem to have issues with the car ride. He even drove his beloved truck, "Steve".
Last night he and I went to our first Head & Neck Cancer Support Group meeting. Each person told the story of what type of cancer they had, the type of treatment, how long ago it was, and usually shared something about one or more issues experienced. There were some horrible stories that really made me realize how lucky we are. I also realize how blessed we are that there are so many people that have had head or neck cancer and are so willing to help others. As one guy told me, he's been cancer free for years but he attends all the support group meetings because he just feels the need to give back. Others helped him and now its his turn to help.
Jim came out of the meeting with mixed feelings. Felt good to hear from others that have had this and are doing well now. Was nice to get some valuable tips. But the message that he is doing exceedingly well compared to how others were at 2 weeks after treatment and that he is being impatient and expecting too much from himself did not go over quite so well.
I'm working on a mental list of the things that we have to be thankful for related to Jim's cancer. Some of these items are:
1) his cancer was found right away; he was sent to a specialist immediately after going to his primary care physician (others had years of struggle before getting a correct diagnosis),
2) the cancer had not spread,
3) treatment began immediately (I'll risk getting near politics and say thank heaven for our US medical system and for our health insurance!),
4) Jim did relatively well during his treatment; no major complications nor illnesses
5) Jim's been able to swallow pills the entire time. This astounds others who have been through this treatment and has been a blessing for me too because it meant I did not have to grind pills to be taken through his feeding tube
6) Jim's been able to swallow water through all of this ... if he had not he might have had to go through therapy now to learn to swallow
7) Jim's ability to talk is much better than expected.
8) Jim did not lose weight during treatment. (granted, he lost weight after the biopsy and since treatment ended but there are so many stories of people losing 50+ pounds so we ARE blessed!)
9) I am thankful we are living here in Denver near Jim's Mom; it would have been very tough without her
10) we have such great support from family, friends, church, Boy Scouts, etc. And this situation gave us the opportunity to get to know some of them better
Actually there are many more blessings that could be listed. God is good!
Last night he and I went to our first Head & Neck Cancer Support Group meeting. Each person told the story of what type of cancer they had, the type of treatment, how long ago it was, and usually shared something about one or more issues experienced. There were some horrible stories that really made me realize how lucky we are. I also realize how blessed we are that there are so many people that have had head or neck cancer and are so willing to help others. As one guy told me, he's been cancer free for years but he attends all the support group meetings because he just feels the need to give back. Others helped him and now its his turn to help.
Jim came out of the meeting with mixed feelings. Felt good to hear from others that have had this and are doing well now. Was nice to get some valuable tips. But the message that he is doing exceedingly well compared to how others were at 2 weeks after treatment and that he is being impatient and expecting too much from himself did not go over quite so well.
I'm working on a mental list of the things that we have to be thankful for related to Jim's cancer. Some of these items are:
1) his cancer was found right away; he was sent to a specialist immediately after going to his primary care physician (others had years of struggle before getting a correct diagnosis),
2) the cancer had not spread,
3) treatment began immediately (I'll risk getting near politics and say thank heaven for our US medical system and for our health insurance!),
4) Jim did relatively well during his treatment; no major complications nor illnesses
5) Jim's been able to swallow pills the entire time. This astounds others who have been through this treatment and has been a blessing for me too because it meant I did not have to grind pills to be taken through his feeding tube
6) Jim's been able to swallow water through all of this ... if he had not he might have had to go through therapy now to learn to swallow
7) Jim's ability to talk is much better than expected.
8) Jim did not lose weight during treatment. (granted, he lost weight after the biopsy and since treatment ended but there are so many stories of people losing 50+ pounds so we ARE blessed!)
9) I am thankful we are living here in Denver near Jim's Mom; it would have been very tough without her
10) we have such great support from family, friends, church, Boy Scouts, etc. And this situation gave us the opportunity to get to know some of them better
Actually there are many more blessings that could be listed. God is good!
Tuesday, September 29, 2009
Recovery Day 15
Cathy made three smoothies for me this morning. I already polished off one and I'm working on the second one. So far they seem to be staying down. Praise the Lord!!
The visit with Dr Klancar yesterday didn't result in a whole lot of solutions for my stomach issues other than the thought that my throat/esophagus is misfiring and the more solid foods aren't going down to my stomach but are staying in the esophagus. I may end up taking a barium swallow test next week to rule this out. Dr Klancar did get a first hand observation that my stomach isn't working right. I had been pumping formula in for at least an hour prior to the visit. While she was in the exam room I vomited. I really tried hard to avoid it but I just couldn't hold it back this time.
Much of the stomach problems could be due to my inability to clear the mucus on the back of my throat. It is very difficult to do without triggering my excessively overactive gag reflex.
Dr Klancar did get me started on an anti-depressant drug and recommended more frequent use of the Ativan medication. I should start seeing results in about 4 days.
I slept better last night. I took 6mg of extended release Melatonin and 1 Restoril at bed time. Then at 1 am when I got up to use the toilet I took another Restoril. I can't say I slept solidly but I slept better and more than the last three nights.
I need to review some of the restrictions on the drugs I'm taking, but I'm hoping to to take my Titan out for a spin today. It has been weeks since it has even been started.
The visit with Dr Klancar yesterday didn't result in a whole lot of solutions for my stomach issues other than the thought that my throat/esophagus is misfiring and the more solid foods aren't going down to my stomach but are staying in the esophagus. I may end up taking a barium swallow test next week to rule this out. Dr Klancar did get a first hand observation that my stomach isn't working right. I had been pumping formula in for at least an hour prior to the visit. While she was in the exam room I vomited. I really tried hard to avoid it but I just couldn't hold it back this time.
Much of the stomach problems could be due to my inability to clear the mucus on the back of my throat. It is very difficult to do without triggering my excessively overactive gag reflex.
Dr Klancar did get me started on an anti-depressant drug and recommended more frequent use of the Ativan medication. I should start seeing results in about 4 days.
I slept better last night. I took 6mg of extended release Melatonin and 1 Restoril at bed time. Then at 1 am when I got up to use the toilet I took another Restoril. I can't say I slept solidly but I slept better and more than the last three nights.
I need to review some of the restrictions on the drugs I'm taking, but I'm hoping to to take my Titan out for a spin today. It has been weeks since it has even been started.
Monday, September 28, 2009
Rollercoaster
What a rollercoaster ride we are on! Well, I think it is more of a rollercoaster for the rest of us and something of a subway ride for Jim. The rest of us see improvements in him every day but he wants everything to be back to normal immediately and doesn't seem to appreciate/recognize these.
Yesterday we seemed to take a few steps back. I don't know what the deal is. He was feeling nausea again and since we'd removed the Sancuso patch (used for nausea) he took some Zofran. He felt better almost immediately and shortly thereafter headed to the mall to walk with his mom. Suddenly the issues with riding in a car were back and the ride was hell. (He had not had these issues since the ride to his last radiation treatment. He also had not had Zofran since he took it for about 3 days in August and didn't like it.) He felt horrible the rest of the evening and couldn't bear to use the feeding tube. (This then causes him to stress more about the weight he has lost since treatment ended.) So last night we put a new Sancuso patch on him with the goal of curbing the nausea. Today he's back to feeling pain in his stomach area that is relieved by lying down. Or is it nausea? Or bowel issues? He can't tell the difference which makes it very difficult to figure out how to help him.
He's really down and in his words "can't see the light a the end of the tunnel" despite reassurances from the experts that he WILL get through this. He's also lucky to have Scott (from our church's cancer support group) and Cindy (from the Head & Neck Support Group) as mentors who have been through this themselves and recovered. Having people like this who are willing to share and assist is such a blessing. I myself am considering attending a support group for caregivers or seeking some other sort of assistance; this was easier for me back when he was seeing doctors every day and answers seemed more obvious. The pressure on me to fix things can be quite a load.
I fully expect the doctor to prescribe an anti-depressant for him today. Hopefully she can also provide some answers about what's been going on lately. (e.g. is some of this withdrawl from the pain patch? He did go off of that Saturday. Is the Buspar the cause of his restlessness and inability to sleep? etc.
Thanks for all the prayers - please keep 'em coming!
Yesterday we seemed to take a few steps back. I don't know what the deal is. He was feeling nausea again and since we'd removed the Sancuso patch (used for nausea) he took some Zofran. He felt better almost immediately and shortly thereafter headed to the mall to walk with his mom. Suddenly the issues with riding in a car were back and the ride was hell. (He had not had these issues since the ride to his last radiation treatment. He also had not had Zofran since he took it for about 3 days in August and didn't like it.) He felt horrible the rest of the evening and couldn't bear to use the feeding tube. (This then causes him to stress more about the weight he has lost since treatment ended.) So last night we put a new Sancuso patch on him with the goal of curbing the nausea. Today he's back to feeling pain in his stomach area that is relieved by lying down. Or is it nausea? Or bowel issues? He can't tell the difference which makes it very difficult to figure out how to help him.
He's really down and in his words "can't see the light a the end of the tunnel" despite reassurances from the experts that he WILL get through this. He's also lucky to have Scott (from our church's cancer support group) and Cindy (from the Head & Neck Support Group) as mentors who have been through this themselves and recovered. Having people like this who are willing to share and assist is such a blessing. I myself am considering attending a support group for caregivers or seeking some other sort of assistance; this was easier for me back when he was seeing doctors every day and answers seemed more obvious. The pressure on me to fix things can be quite a load.
I fully expect the doctor to prescribe an anti-depressant for him today. Hopefully she can also provide some answers about what's been going on lately. (e.g. is some of this withdrawl from the pain patch? He did go off of that Saturday. Is the Buspar the cause of his restlessness and inability to sleep? etc.
Thanks for all the prayers - please keep 'em coming!
Saturday, September 26, 2009
Recovery Day 12
I had a very difficult night sleeping. One thing Cathy didn't include in her last post was that the loss of Serotonin affects my ability to sleep. Boy, don't I know that. I seem to have all this excess energy at night and sleep just doesn't happen. Sleep supplements are of only limited help.
Cathy experimented with some foods for me. One success was pumpkin pie without the spices and crust. It's juicy enough that I can swallow it OK. Plus, it doesn't taste too bad either. Way to go Cathy!!!
The last pain patch came off this morning. Hopefully the withdrawal effects won't be too bad.
I'm having trouble maintaining my weight. I can't get enough real food in me along with the formula.
It's a really nice day out so I'm going to help Cathy with some painting. But I'm dragging pretty bad due to the lack of sleep.
Cathy experimented with some foods for me. One success was pumpkin pie without the spices and crust. It's juicy enough that I can swallow it OK. Plus, it doesn't taste too bad either. Way to go Cathy!!!
The last pain patch came off this morning. Hopefully the withdrawal effects won't be too bad.
I'm having trouble maintaining my weight. I can't get enough real food in me along with the formula.
It's a really nice day out so I'm going to help Cathy with some painting. But I'm dragging pretty bad due to the lack of sleep.
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